Life or something like it

Lattice Degeneration surgery follow up appointment

2010-10-26T08:50:00.000-07:00

Last Thursday was my one week follow up appointment with the eye surgeon. He said my eyes were healing better than he’d hoped, given my prior poor wound healing experiences. He cleared me for wearing my contacts again, as long as they felt comfortable to me, and told me to take them out periodically to check and see how my eyes felt without them in. Apparently having them in disguises aches and the like from your perception of them, odd but okay. He also told me to slide back into life as I felt I could. I did ask him about my left eye, which I seem to be having more issues with. Prior to the surgery I was Myopic, or near sighted, with great vision for up close things like reading. Since the surgery that has not been the case with my left eye. He said he wouldn’t worry about it yet, that he had to do “an extensive amount of repairs’ to my left eye and it would likely ‘work itself out’ as it healed. I return to see him in six weeks for a recheck.
So, I have started wearing my contacts again, not full time like I did before, but moving back into it. I seem to notice the vision change in my left eye more when I have them in than I do when I am wearing my glasses. I haven’t attempted driving yet partially because my truck has a bad tire and I do not really want to drive it until I can afford to have them replaced. They all need replacing, but the one has a bad spot that could get nasty should it blow. My vehicle is already some what off balance thanks to the wheelchair and wheelchair lift. For now, my husband is doing all the driving in his truck. It’s older and clunky and huge, and incase you missed the drift….I don’t care to drive it. It means, however, that I either don’t get to use my wheelchair or that he has to manually lift the thing out of the back of his truck bed. Since the chair itself weighs a lot, I’ve been going without it. Luckily, I don’t have to go many places. Some places, like the grocery, have the little carts available so I use those. But over all my hip has gotten a bit more use here and there, causing extreme pain and ache. On the upside, however, with me not having to leave the house daily for work my husband brought the chair into the house and I have been using it. That is something I couldn’t do before because I needed the chair in the truck to go back and forth to my job, and our home wasn’t set up in a way for me to be able to get the chair in the house by myself. I was using an office chair to push myself backwards from room to room.
Today I need to go to the grocery, but will wait for him to be done working and come home so that we can go together. I think, honestly, that I am still a bit put off about driving myself anyway, even if it’s just a jot down the road to the grocery. Not because of the tire, I can drive slowly enough on side roads that it shouldn’t be an issue for so small an errand. No, it’s my eyes. Not only for the driving, but you have to read labels in the store. I really hope my vision returns to what it was pre-surgery, but I suppose if it doesn’t I will adapt to this also. Still, it is nice to have some measure of comfort knowing that the repairs to my eyes, so far, look successful. It will probably buy me a few more years of good vision before rearing its ugly head again. Hopefully, it will do as we hope and prevent a spontaneous retina separation.

Cryo surgery for Lattice Degeneration

2010-10-19T12:07:00.000-07:00

Cryo surgery for Lattice Degeneration

I’ve been gone for a while, so I haven’t updated my blog. I took some time off for the birth of our first grandchild. I was able to be with my daughter during delivery and it was simply joyful. She is an amazing person that made it through a natural delivery without any medications. The little guy is 3 weeks old now and I miss them all terribly, but I had to come back home to my own responsibilities. Once I got home, I made the promised call to my eye doctor, who promptly called the eye surgeon and set up an appointment for a couple of days later. So we trekked up to Columbia for the appointment, we being my husband and I, he happened to be on vacation that week.
The appointment with the eye surgeon, a retina specialist did not go as we thought it would. They did the dilatation and he spent a considerable amount of time carefully checking each eye, then asked if it would be okay for him to go check some facts concerning the combination of Lattice Degeneration and Ehlers-Danlos Syndrome. He came back and began to explain. It seems the degeneration is my eyes was much further advanced than anticipated, with the left eye being worse than the right. He said I had multiple stage degeneration in all four quadrants of each eye. He was so alarmed about it that he asked me to roll over to the hospital and have surgery on the right eye within an hour, with a return trip to the hospital the next day for the surgery on the left eye. We discussed the options, with me explaining to him that my own research showed that the cryo surgery seem to be the better option (versus laser surgery), with a higher success rate for people with EDS. He said that was what he had gone to look up and that he had found the same answer. So it was decided. His staff kicked in to full gear calling our insurance to get it pre-approved and calling someone from the hospital to come over and escort my husband and me to the outpatient surgery unit.
They do the surgery while you are fully awake, numbing the eye so that you cannot feel it. I have an issue with needles so they gave me 5mg of valium to help with the anxiety. It didn’t work, which I tried to tell them would be the case, but alas they did not listen. I have such a high tolerance for narcotics that I don’t even notice 5mg of valium. The high tolerance came into play again with the numbing agent because I was able to feel what he was doing after the first shot, so he had to do another. All in all, it is a terribly odd feeling to have your eyeballs rolled around while someone is freezing parts of the back of them, during which your pupil is dilated to the maximum so that the surgeon can see the back of your eyeball but making you, for the most part, blind. All in all, it hurt but not too terribly bad. My eye was heavily padded and tapped over to keep it from opening, while it is numb and dilated you cannot feel if the cornea is getting scraped so you must keep the bandage on until the numbing agent wears off. It was painful but not unbearable, so we checked out and headed home. Plans cancelled for the rest of the week, which were to include a long over due fishing trip.
Thursday we returned to the hospital where I was again given the 5mg dose of valium and it again, didn’t work. The numbing shot didn’t work either but the doctor decided to push on through it rather than do another injection. It hurt like bloody hell. As I said before, there was more damage on the left eye, so more work had to be done. By the time the procedure was over, I just wanted to ball up in a corner and die. I don’t know why he didn’t listen that I could feel it. He chose instead to say that it was hurting worse because I was ‘squeezing’ my eyes shut. Well, duh…it’s kind of instinctive to do that when someone is doing something that hurts like that. It didn’t matter, it was over. The eye was a throbbing, swollen, painful thing that was stuck in my head with nothing to be done about it now. It made my whole face hurt and messed up my sinuses to boot. They don’t give you pain killers to take home, by the way, so you just get to suffer it out on your own. If screaming didn’t make it hurt worse, I think I might have just let a good one go.
Home we came, with doctors orders to ‘lay around and take it easy for the next 7 days’ and to ‘stay indoors, avoiding lights’ because the dilation of the pupils would last for days.
I spent a lot of time sleeping, ironically. Sleeping is something I don’t usually do well because of the EDS. I mean really, when you sleep your muscles go lax and then you dislocate or sublex something, wake up to put it back, then repeat. It doesn’t exactly make for great rest. I guess in this instance it was purely self-defense, my mind knew no other way to get through it than to make me pass out cold for short periods. So I went with it, not much else I could do. Doing anything, like trying to watch TV, get on the computer or read just made the pain in my eyes worse. Keeping them closed made them feel a little better, so closed it was.
I started writing this on Monday, 5 days post-op for the right eye, 4 for the left. The right eye is recovering a lot faster than the left, which is sensible since less work was done to it. Still, I have to write this in even shorter bursts than normal because it makes both eyes water. I hope to goodness this surgery works because I don’t honestly think I could endure that again. They would have to knock me out completely. It was just too painful. I am glad I did it, it is much better than playing roulette with a retina separation. Still I have to wonder sometimes, how much else will EDS demand of me? I cannot keep my fingers from dislocating without the aid of special splints. I cannot keep my hip in the socket. I cannot keep my ribs in place. I cannot keep my shoulders in place. I cannot sleep for even a couple of hours comfortably. I cannot take medication to help with the pain because I have such a high tolerance to all of it that it is rendered useless. I cannot stop or even reduce the amount of pain I am in every single day.
And yet, in the end, none of that matters. It really doesn’t. It’s just hard to remember that some days, when the pain is worse than usual, when the demands are higher than normal, when people are meaner than they need to be. None of it matters one fig. What does matter, and what I cling to so dearly, is that I be the best person I can be each and every moment of each and every day, to try and be thoughtful and kind; understanding and patient; calm and accepting. Too bad most days I fail at that goal, but at least I still try, EDS cannot take that from me.

Hip Therapy again

2010-09-14T08:00:00.000-07:00

9 14 2010
Hip therapy.
Today I go in for my second round of shots in my hip. I had this done a year ago and it helped a lot, so we decided to do it again. This time though, the doctor used a much ‘hotter’ solution for the injection. The injections go into my ligaments and get them to create scar tissue, which draws up the ligament and makes it some what tighter. Of course with EDS, it doesn’t last for very long. They re-stretch in about a year. The shots themselves are some what painful, but the following few days are the worst. It doesn’t help one bit that I hate needles with a passion.
Before my appointment for my shots, however, I have errands to run. I have to stop by the eye doctors and talk with them about the surgeon he is going to refer me to. Then I have to go by the MO Career Center as part of my Unemployment Benefits. Their purpose is to help me find a job. So far, I haven’t had much luck on my own. I do get interviews, but when I show up in my wheelchair I can tell by the look in their eyes that I might as well go home. No one wants to hire me. The only ones that might are the ones that ‘have to’ because of their employment guidelines. Unfortunately those are also not very good paying jobs. In my case, the chances of me finding a good paying job are pretty slim. I have a ton of training and experience, but no one wants the wheels. It is rather a downer, in some ways, because I want to work.
That’s a subject for another post, I think. At any rate, I’m dreading the shots today. Hoping they work but dreading the process. I do find it hard to move around after the fact, so it’s probably a good thing I already have to drive with my left foot. I injured my right foot on the job, dislocated some bones and stretched out the tendons, now it’s too painful for me to use it on the gas/break pedals. I had to learn to drive with my left foot while I had it in the walking boot (camwalker) for 6 weeks anyway. Interesting thing unlearning to use the right foot and learning to use the left foot on all the pedals. Luckily for me, I drove a clutch for years when I was younger, so the concept of using the left foot on the pedals wasn’t a completely foreign concept to my brain. The rotten part is that I have to drive barefoot. For what ever reason I can’t feel the pedals very well with a shoe on and have much better control without the shoe. Driving a large vehicle (because of the wheelchair lift) having good control is a must.
I’m off, I’ll write again soon. Laters!

What is EDS?

2010-09-10T10:29:00.000-07:00

EDS stands for Ehlers-Danlos Syndrome. In technical speak it’s a genetic defect of the Type II Collagen. There are different ‘types’ of EDS, broken down into categories of symptoms and doctors/geneticists lump you into the ‘type’ that lines up with the majority or the severest of your symptoms. This can lead to more confusion, however, because most people with EDS have cross over symptoms of the other ‘types’.

So, in non-technical speak- what is EDS? It’s something different for each person that has it, to the degree they have it and even to the degree that each of the individual symptoms of it manifests. To understand EDS you have to understand that Collagen is ta substance in the body that occurs naturally. It’s responsible for making things stretchy, by things I actually mean EVERYTHING. Think for a moment on everything in your body that stretches. The most obvious are tendons/ligaments that allow your joints to move. With out stretching your arms wouldn’t bend, nor your knees. That is obvious enough, right? Okay, now spread your mind out further and try thinking of other things that stretch. Collagen is a major ingredient in the cosmetic industry because collagen is what makes your skin stretchy. As you age you loose your collagen and wrinkles form. The often over looked stretchy things are blood vessels, eyes and internal organs. Think of how a doctor measures your blood pressure, it is by the expansion and contraction rate of the blood vessels as they carry the blood in pulses away from and back to your heart. Without collagen those vessels would not expand and contract.

Now, the basics aside, people with EDS actually have too much collagen. Things are too stretchy. Probably the most dramatic of the types involves the skin and leads to the person being able to pull their skin away from their underlying structures. It has been featured on television shows and medical mysteries series. It’s very easy to see and understand that there is something obviously not ‘normal’ going on. In the other cases of EDS, it’s not nearly so easy or clear. The vascular type mainly affects the blood vessels and these people are very prone bleeding, scarring and sudden death due to aneurysms. This type killed my father when he was only 29, although it was not discovered until my own diagnosis that this was the case.

In hypermobility type, which is the ‘type’ that I fall into, the joints are all very loose and dislocate or sublex (partially dislocate) very easily. This type is often seen in circus shows with contortionists who bend in ways that make a normal person cringe. Beyond the obvious joints that are affected, knees, elbows, etc, there are the ones that people do not even consider to be joints. These include the small bones in your feet and hands or your ribs. A bear hug can literally cause me hours of agony by displacing ribs. I personally dislocate just about everything to some degree, my most stable joints are actually my elbows, which is opposite of the ‘standard’ hypermobility case.

As I have aged my joints have become more unstable, and bouts of extreme stress seem to accelerate jumps in the progression. I have had difficulty all my life, but because EDS was considered to be so “rare” it was never even discussed. I do recall one doctor saying I was far to hypermobile when I was very young. I was having difficulty in gym class and my gym teacher gave me an ‘unsatisfactory’ mark, when asked to explain why, he said it was because he’d never seen a skinnier lazy kid. Every time I was asked to do something that involved running, I would run a bit and fall down. His assessment was that I was falling down to get out of the running. The doctor’s assessment was I was hypermobile and having trouble with actually physically running. The problem followed me through my entire school career.

About 10 years ago I underwent a situation of extreme stress that seemed to set in motion a rapid progression of some symptoms. My joints became more unstable, my skin thinner and easier to scar and tear, bruising came with slight touches. It has progressed in fits and starts since then, with my hip becoming the largest ‘problem’. After two years of trying to figure out why surgeries didn’t help with my knee hyperextensions and why my hip would just not stay in place I ended up at the Mayo Clinic. There was diagnosed in the Genetics Dept has having EDS, hypermobility type. It opened up a whole new world. I learned that the things I had been experiencing were common problems with EDS’ers and I began to feel less and less like I was totally alone with this. The problem is that EDS is still considered to be a ‘rare’ defect so it’s not taught in medical schools outside of a short paragraph in a book. Trying to find a doctor that even knows what EDS is, much less what to do and not to do with it/for it is a real challenge.

Lattice Degeneration and Retina Tearing.

2010-09-09T11:15:00.000-07:00

Months ago I noticed a black line in my left eye that resembled a piece of lint. At first I figured something was on my contact, took it out and cleaned it several times and realized that it wasn’t. I just blew it off and figured I would check it at my regular eye exam, no big deal. Well, yesterday was my regular eye exam and turns out I was wrong. In the time since my last eye exam apparently I’ve had a significant increase in degeneration and the ‘lint’ was actually a ‘floater’ caused by fluid leaking into my retina. Now, I’ve been seeing my eye doctor for 25 years, he’s an excellent doctor, and a really genuine good person. I’ve never, ever seen him that upset about something. He berated me firmly, but gently, for not calling him right away when the floater appeared and then reiterated the fact that we that have EDS are more prone to sudden retina separation. Not getting treatment in time could lead to irreversible blindness. He wrote with big letters in permanent marker “HIGH RISK OF RETINAL DETACHMENT!!!” and “GET DR. IMMEDIATELY IF PT CALLS!” Okay, that act alone sort of drove home the point.
He went through what was going on with it after the dilation and exam and told me I have some options but with me having EDS he wasn’t at all confident about which option would be the best. He asked me to do some digging for info on my end while he did the same on his. Together we will decide what the best course of action is from there. He wrote down the specifics to make it easier for me to do searches on and David and I went home.
Now, I hate overreacting to things and I try not to, but the idea of going blind just hit me like a 2x4 upside the head. I’ve dealt with fractures, surgeries, daily dislocations and been stuck in the wheelchair because of my hip refusing to stay in the socket. I’ve adapted to things in a ton of different ways, replacing glasses with plastic cups, only purchasing certain shapes of cups so that it’s easier for me to hold and less likely I’ll drop, replacing my glass measuring cups with plastic ones, buying pints of milk because gallons are too heavy, cutting my hair short so I don’t have to try and blow dry it, etc. The list goes on and on. All of them were thought out and accepted because it was/is the best course of action. I’ve done my best to just roll with the punches and not be all drama about them. But going blind?? It was just a ‘full stop’ moment. I can deal with not walking, giving up hiking, giving up my horse, giving up solo grocery shopping, not riding my bike anymore, not being able to go for a nice long stress relieving run, but going blind? BLIND?!?!
So my day yesterday rather was blah. It took me the whole day to just wrap my mind around the idea that I could go blind. Once I did get it wrapped up and plopped a bow on top I returned to my more normal attitude of ‘just another part of life with EDS’ attitude. Then I started searching for information, education is key to just about any condition. I haven’t made any decisions on what I want to do yet. For one, I don’t really want to pursue any further ‘treatments’ until after our first grandbaby arrives. After that, well, we shall see. Some of the things I read highly suggest being preemptive, having surgery to try and stop further thinning and tearing which could possibly stop the spontaneous retina separation from occurring. Others suggest the wait and see approach but if this or that happens then you are forced into a full blown surgery to try and repair the separated retina, which has a much higher failure rate than the preemptive surgery. So, for now at least I will wait. Once the grandbaby is here and I’m back home from helping out his mommy, then I will take up the cause again and make a decision.
Laters =)

Rather random?

2010-09-06T10:59:00.000-07:00

Well, today’s thought is rather random. Or rather I should say all my thoughts today are rather random? I am not so focused on any one thing, which is fairly normal for me, but I usually do try to focus on one thing when I write. So, I suppose then today’s focus is on ‘un-focus’, lol.
I am a random thinker, a lot of people are. My mind tends to cross reference things so that storage and retrieval is easier. For instance why would thinking about the Star Trek episode “Trouble with Tribbles” cause me to immediately jump to the fact that I forgot to add dishwasher soap to the grocery list? Was I doing dishes the first time I saw that episode or had it described to me? Does the image of the over flowing Tribbles remind me of the time my best friend’s daughter loaded too much soap in her dishwasher and flooded the kitchen with suds? Who knows? I’m sure some expert or another out there claims they know. However, experts also used to claim that the brain did not heal itself, which we know now to be untrue. The brain can and does heal itself.
I do, at times, make the conscious decision to use association to remember things. I learned that in school as a child, sing-song rhymes are easy to recall, math also has its useful tricks. As I grew older, I began using those things to create associations with times or dates, items or ideas. Some times it works well, other times it seems to not work at all but then jumps up at an unexpected time and place. I have the tendency to nickname people because I am horrid at recalling names. I can, however, assign a nickname to someone that places them immediately in my memory. Odd, you would think I could do it with their actual name, but no. The nicknames a lot of the time seem to the person they get assigned to as totally random or odd, but for me it is usually a summation of a first impression. I have one friend I affectionately call Ada. (Ahdah)- this stands for A.D.A or American with Disabilities Act. This friend is in a wheelchair and is a regular contributor to the American Pain Foundation. I’d actually have to look to see what his real name is, lol…I call him Ada and he’s okay with it.
I have another I call Spunky- she’s short with red hair and is a constant ball of energy. You know the type I mean, the one that is always pulling out birthday cards for so-and-so or sending a thoughtful note to someone because their great aunt on their father’s side is ill. She is a ferocious tender of information about everyone she meets and who they are related to and what all those people are doing. Just thinking about that makes my brain hurt. I can’t retain information like that on people. Honestly, it’s probably because I don’t want to. I used to feel bad about that, like it made me a bad person or something, but then I thought no. I actually find it kind of creepy to receive a note in the mail from someone I’ve only met once or twice saying they hope my great aunt is doing better now. Kind of stalker like feelings, actually. Not that they are intended that way, but to me that’s how it feels. Why on earth would you spend so much time combing through the paper and the like to see who you ‘need’ to send a card to? There have been occasions that I have felt like a total ass for not doing that, however. Finding out two weeks after the fact that a friend was supposed to relay the message that another friends mother had passed away but that friend had completely forgotten to tell me. Then I felt like a total jerk for not showing up at the visitation or sending a card. So I suppose there is a balance of sorts. Choices we make.
Today I made bread, again, after all it is Monday. One whole loaf and four mini loaves to use for hoagies later in the week, David wants to go trout fishing with a friend so the hoagies will travel along with him. He wanted me to go trout fishing also, but I gently reminded him that it would be physically impossible for me to don waders and tromp into a cold stream. I’d be a dislocated mess in about two seconds and oh what a joy that would make the rest of the day. So he’s planning on going with his friend and I am okay with it. I told him to do like he did last time, bring home a few nice trout to cook up. Last time I smoked them on the grill and served them up with garlic roasted potatoes. It was very, very good. He’s off this week, so he also wants to take the big boat out and go fishing one day. I can do the big boat, since he lifts me in and I just sit in a chair like I do at home. It is very tiring though, I think because of the long truck ride to and fro more than anything. If I can wiggle about I’m okay, there isn’t much wiggling to be had in his old truck.
Tootles!

Digital photography classes online at BetterPhoto

2010-09-03T13:54:00.000-07:00

Digital photography classes online at BetterPhoto

Photography thoughts....

2010-09-03T13:12:00.000-07:00

I few posts ago I said that now that I had some free time AND the energy to do something, that I was going to start pursing some of the things that I truly enjoy, such as photography. In that effort I took my camera with me yesterday while I was out running errands. I had to go by my State Farm agent’s to move my 401k to an IRA, then over to see one of my favorite people, my long time hairdresser, Janie. On the way home I spied a lovely patch of Missouri wildflowers growing in a spot that I could actually get to. It’s not easy being a wheelchair bound photographer, lol. Since David and I want to use mostly native Missouri wildflowers to landscape when we build the new house, I had dual purpose. I truly like the bright little flowers, the towering yellows and the stunning purple ones. Having them recorded with my camera would make remembering and identifying later much easier.
So I maneuvered myself into position and sat waiting for the clouds to position themselves so that the yellows wouldn’t be blown out and that the purple flowers would get the most accurate color. While I was waiting, I started to realize that there was an entire community in this patch of flowers. From the ground covering tiny yellows to the towering daisy like flowers, there was a lot going on. There were several different kinds of spiders hunting among the stems and flowers. Some were actively stalking, others folding themselves to resemble stems in effort to catch the bugs that flitted from flower to flower or the ants that trudged up and down the stalks. There were moths and butterflies, crickets and a few I couldn’t even name. The longer I stood there, the more I saw. This 10 foot long 3 foot wide patch was teaming with life. Which made me realize that much of life is like that, we blow by things maybe pausing briefly to admire the color or smell, but not stopping long enough to actually SEE what is going on there.
So I stopped and photographed the flowers, lol. I’ve included a link to my BetterPhotos.com photo gallery for those that want to see.

Vocational Rehabilitation

2010-09-01T14:30:00.000-07:00

Vocational Rehabilitation
Yesterday was my appointment with Voc Rehab. I made the appointment at the suggestion of a friend who was once in a similar position as I am. I do not know about other states, but Missouri has a Vocational Rehabilitation department that is a sub-department of the Missouri Department of Elementary and Secondary Education. Voc Rehab is a tax payer funded department that exists to help persons with disabilities find employment. They offer Physical and/or Occupational Therapy, on the job training, assistive devices to enable you to work- such as help purchasing or completely purchasing wheelchairs, lifts, prosthetics, specialized devices or software, and other such items as would make it possible for the disabled to obtain and sustain gainful employment. For instance, because my fingers dislocate, become cramped and are very painful when I attempt to type for longer than short periods with longer rest periods, they would purchase Dragon Naturally Speaking software for me. That would allow me to still ‘type’ letters and emails, but by speaking instead of using the keyboard.
I reported a few minutes early for my appointment and waited in the lobby with 5 others waiting for the group orientation. When the time arrived they lead us all to a conference room and gave a slide show presentation on what Voc Rehab does, how and for whom. After than we were met with individually by the counselors, so that no one had to disclose personal information in the group setting, while waiting our turns, one of the other 5 decided to just up and leave. It was a mother and son, the son was the one seeking help, but the mother seemed to be running the show. She decided, and announced loudly to those of us still in the room after the counselors had left, that this was a total waste of time.
When my turn came I met with the district supervisor. He was a very nice fellow, around my age and obviously intelligent. He asked for my pre-filled out paper work, glanced it over, then began asking me questions. Mostly his questions were regarding EDS, as expected, since most people do not even know what it is. After about 20 minutes of Q & A he stated that there really wasn’t much he could do for me at this point. He said that I should seriously consider applying for SSD and once on SSD to come back and see him again. He stated that because of the numerous restrictions they would have to ask for from a potential employer, they would need to have the back up support of me being on SSD to justify it. Also, because it is partially income based and David makes more than the maximum limit, they wouldn’t be able to help with much of anything other than job placement. Effectively one cancelled out the other. However, if you are on SSD, all of the income guidelines are automatically dismissed. So, for me to get maximum benefit from Voc Rehab I need to get on SSD.
When (and if) I get on SSD, then they can help me in all of the ways they offer. He also explained that there is an option with SSD that is basically a “work incentive”. If you want to work, you can earn up to $900 a month without it affecting your SSD benefit amount. With the additional work incentive, however, you can actually make more than that. Essentially what the work incentive is, is a form that Voc Rehab fills out and submits to SSD for you. On this form they list what it costs for you to actually be able to work. In my case, they would figure an amount for the maintenance on my wheelchair, maintenance on my lift, braces, extra medications, etc. Once SS approved it then I could actually get a job earning the $900 minimum PLUS the amount of the work incentive and not loose my SSD benefits. He figured with this set up, I could be making a month nearly what I was making working full time.
I will write more later, I’ve worked on this periodically all day long and now my fingers are just too tired. Lol. TH

Neat freaking

2010-08-26T13:43:00.001-07:00

Adjusting to new things is always a challenge in some form. I’ve been off for two full weeks now and I’m still adjusting to it. This morning I actually fell back to sleep after David left for work. Then I took my time cleaning the house up, they called and want to show it tonight. We have an open house scheduled for Saturday also, so it needed doing anyway. It was pretty much a breeze to do though, since I’m able to keep up with it on a daily basis now. It’s nice having energy to do things. I hated coming home flat out exhausted every day.
I admit it, I’m a neat freak. I have this issue with messes and piles. When my environment is messy I feel all stressed and grouchy. I hadn’t been able to keep things the way I like them the last 5 years or so, I just didn’t have the energy. Even on weekends I didn’t have the energy. Saturday was mostly trying to recover from the work week and Sunday wasn’t much better. I don’t know how many weekends I had that started with me coming home from work on Friday night and not leaving the house again until Monday morning to go back to work. It really sucked, not just because of the whole keeping things neat part, but also because I didn’t have the energy to do fun things with my husband either. I didn’t really realize how bad it had gotten until this last weekend when I actually felt like doing something. It was such a foreign feeling! I like to look around the house and see that things are neat and tidy. I know, it’s silly, but I like it that way. It’s also just very practical for me. When I move around I have to think about the safest path from point A to point B. Or when I’m cooking I have to make sure what I am picking up or reaching for. Yes, I drop a LOT of things. I’ve pretty much given up on glass glasses, they break when I drop them, lol. I have learned to get plates out one at a time, to put the pot on the stove and fill it up by transferring water in plastic measuring cups, and to put my office chair on the highest level so I can sit at the stove while I’m cooking. I wish they had ones that when up higher.
So it’s a practicality thing, as well as a preference thing. Next week I have my appointment with Vocational Rehabilitation to see if they can find any job that I can actually do. I’m not sure what to expect from that. I haven’t a clue, actually. I will share when I have it over with, so others can not be so clueless as I am.
That’s all for today, I’m afraid. My fingers/hands are sore and tired from cleaning so they need a break. I’ll write more later.

Bread, tomatoes, doctors and politics, lol

2010-08-24T10:04:00.000-07:00

8/24/10
Yesterday I made Honey Wheat bread, one regular loaf and 3 small hoagie style rolls to use when I make my healthy version of Philly melts later this week. It had been a while since I made this particular recipe, partially because of being so exhausted from working full time and partially because my hands couldn’t take it after working all week. Since I’m not working any longer, I figured I’d give it a whirl. I started off by dragging the hubby to the Amish store for some unbleached bread flour and whole wheat flour on Saturday. It’s so much less expensive to purchase it from them. It worked out wonderfully. The regular loaf is light without a lot of air bubbles in it while retaining a nice whole wheat flavor and texture. I had a piece for breakfast, toasted with peanut butter and peach butter on it. Since it is so much less expensive to bake it at home, not to mention better for you because you know exactly what’s in it, that I would start making bread once a week. It actually works out quite well. It only takes a short amount of time to put the dough together using my Kitchen Aide mixer (thank you hubby for that Christmas present) and then an hour break while it rises. Then a short amount of work to roll it out and another break while it rises again, then let it bake. Not bad for a mornings work.
One afternoon I spent blanching tomatoes to prepare for canning. I purchased a 25lb box of ‘seconds’ tomatoes at the farmers market, blanched, peeled and then cored and quartered them. 1/3 went to straight up canning, 1/3 to making marinara sauce and 1/3 to making salsa. Today after I get done with my doctor’s appointment I am stopping by to pick up new lids and will work on the actual canning of the goods tomorrow. I know most people do it all in one day, but with my fingers/hands, etc. that is not an option for me. Thank goodness for modern refrigeration!
Today I go see a doctor that is closer to home and also does Prolo Therapy. I adore Dr. Haman, but the long drive to Kirksville was just too much. Especially to do it once a week for six weeks and with gas prices being what they are. So today I go see Dr. Bader in Columbia to see what he has to say. If he thinks that doing more Prolo Therapy will be feasible for my joints, which ones and on what schedule. It did help, when Dr. Haman did it, on my knees and shoulders, not so much on my hip. I guess the hip is just too large to have it be very effective. The biggest problem is that with EDS the tendons just eventually re-stretch making it necessary to have repeated sessions. This gets expensive too, because insurance only covers so much of it. Since I have no job, expensive is not a great option. I will wait to see what Dr. Bader has to say and then weigh my options. I hate to decline doing something that will be good for me but if I cannot afford it, I cannot afford it.
Got interrupted by a robo-call- I hate robo-calls. I wish they had an ‘opt out’ feature for those too, like they do telemarketing. I mean, seriously, why should we HAVE to be subjected to political phone calls? Do they really make anyone change their mind? If they do, that person must be fairly wishy-washy in the first place, to let something that irritating decided important issues for them. I was channel surfing our whole 9, air television, channels when I ran across PBS international playing RT- Russia Today- a daily news broadcast. They were interviewing a man who said that “Americans are the most ignorant people in the world, not for lack of education, but for lack of information. They do not realize that their television and radio sterilizes the information given to them, especially about how the rest of the world perceives them.” Seems to me I’ve been saying that for quite a while now, as have others. Listen to the BBC World today sometime, or RT or the “Afghan Report” news broadcast. The way we are told the world views us isn’t what you will hear on those shows. Even if you disagree with them, it’s best to listen and know all the angles than to burry your head in the sand!
Anyway, off to do a bit more before cleaning up and heading for the doctors. Laters!

Adjusting to life off work

2010-08-20T15:57:00.000-07:00

Life goes on, as the saying goes. More paperwork filed out, more decisions made. We did receive another offer on the house, so that makes 3 now. We turned this one down also, however, because they wanted us to pay the full bill for closing costs. It was closer price wise, but when you deduct the closing costs, it was too low. I have heard of people wanting to split the closing with the seller, but never one wanting the seller to pay all of it. Since we are in no big hurry or have any pressing need to sell the house, we have opted to wait for the right offer to come along. As TDH says, every month we are here is more we pay off on it, lol, so it only benefits us to stay. I understand people ‘bargain hunting’ but get real.
Anyway, now that I’m not drop dead tired constantly I can diddle with typing this blog, take a break, diddle a bit more, take a break. It’s an ongoing adjustment, being without work. I’m adapting better than I had thought I would. Of course, so far I’ve been rather busy with all the legal issues and so forth, as that settles down the pace of life will change again. It is SO nice though, to work a bit, take a break, work a bit, take a break. I can get a bit done that way, without dislocating everything since I can stop when I feel it flaring up and then resume when it has settled down again. I can pace myself, unlike a typical 8 hour work day were you are trying to cram in as much as humanly possible. I can rotate what I’m doing too, so I’m not over taxing the same joints. One day diddle with my plants, one day clean the floors, one day dusting (who knew that would dislocate your shoulders??), one day folding laundry that TDH has so graciously done and brought upstairs for me. I spent a whole hour the other day working on my t-shirt drawer! It was dumped when the guys moved the furniture out for the new carpet to be put in, I just never had the energy or finger/wrist strength left to deal with it after working all day/week.
One perk I figured would happen, but wasn’t positive it would, was that I always feel so much better when things are organized and clean. I just feel more settled and sure about things. For one thing, when you have to seriously think about HOW you are going to walk across a space and mentally plan what you can grab if the hip gives out, or what spot you should aim for if you can’t stay up right, the LACK of clutter is very important! A straight line is much easier to walk than one that weaves around piles of stuff. Same for mail or filing, it’s much easier to flip to what I need with minimal dislocation of fingers, than it is to have to pick up a pile of junk to sift through and try to find what I need- and popping fingers and wrists out of place in the process. Yes, I DO file stuff… partially to satisfy that inner control freak, but mostly because I get tired of hearing “Honey? Do you know where ……. is?” and it never fails is something important- like the light bill, or property tax receipt- that is needed right away. So it serves dual purpose, calming the inner control freak and it keeps me from having to strain fingers/wrists trying to find it.
I am looking into things to keep myself ‘busy’, too. I can’t commit to ‘normal’ hobbies because most are too physically demanding. So I’m going to ‘un-commit’ to a few, lol, if that makes sense. I do better when I have a game plan, so I’m making myself one. I’m working on a schedule that is looking something like this:
2 days a week- 1 hour (total- not necessarily all at once) of:
writing (blog or stories);
searching out something interesting to photograph;
actually photographing them;
cleaning something in the house (ie: kitchen, bathroom, etc.);
cleaning something that needs it (ie: old files that need shredding, storing photos in archival boxes);
baking/cooking (I love whole grain breads and making pasta from scratch, etc.);
making the homemade soaps and lotions I love- no artificial crud for me- my skin is too sensitive with EDS;
and lastly
Learn 1 new thing a week.
I figure just figuring out how to get all that done without dislocating something should take me at least 2 weeks. Plus for some of it I have to enlist the aid of others, mainly TDH or my best friends. I can’t carry up the boxes of photographs that need going through and stored properly, or carry in groceries, etc. Plus I have to figure out how to do it on a very limited budget, lol, which is going to be a challenge in and of itself.
Suggestions?

well well

2010-08-13T15:09:00.000-07:00

Life continues to be interesting. BamBam is home with her new husband and due soon with our first grandchild. Jester is home for the baby shower and to meet the new addition to the family. So far, everyone loves him. Tomorrow he has to pass the 'grandma' test and the great aunts also, lol, poor guy! We are doing the baby shower early then a BBQ in the afternoon for family to get more time with the newest addition. When the baby (it's a boy) is born, they won't be able to come here, so everyone is taking the time to say 'hi' to him. BamBam has been great about having people talk to her 'belly'. lol.
If you didn't already know, I'm no longer working. Heavy debate on filing for SSD or trying to find another job. The wheelchair makes finding one highly unlikely, especially in this job market. I've actually got the best nights sleep I've had in 2 years last night. Just getting up and going in to that office was causing me severe anxiety. That's done, I'm healing from the inside out. It's amazing to me how I can be so happy about it. Rather sad when the workplace is so toxic that NOT going and not getting a paycheck is less stressful than going. Things will be what they will be.
So the fight begins with SSD. I hope it doesn't take 7 years to get on it, as I've heard from others it does. We shall see.
Too all my friends with EDS, God Bless you! You are a lifeline to understanding, a wonderful understanding community of people who share the same problems and issues as I do. It feels so good to say to one of you "today I dislocated....." and not hear "WHAT?!?!" but rather "oh fudge! did you get it put back??" lol Who would have thought that finding a group that understands 'don't hug me b/c you'll dislocate my ribs' would make me so happy?

Have I ever told you about the one time I played with an Ouija board?

2010-04-07T14:48:00.000-07:00

To understand this story, you have to understand a few preset facts. One, we moved to the small town of Carthage, MO the summer between my 2nd and 3rd grade years. No one in Carthage knew that my stepdad was indeed my stepdad. My mother had changed my name to his and introduced me as his since they married prior to me starting kindergarten. Two, being much younger than my siblings, we weren’t ever in the same school together, and Three, I have always had a, mmm….odd connection to odd events.
So, in the 5th grade a new family moved to town and we readily adopted her into our little band of farm girls at school. Her name was Dawn and her family rented the rather large old farm house located behind one of the few bars in the area. This bar and farm house sat out on what was, at the time, the far reaches of the town territory, just beyond the Highway 63 drive-in theater and just before miles and miles of open farm land. In other words, outside of a few houses in a row, the bar and 5 acres over, the drive-in, there just wasn’t much around.
It was to this house we gathered for Dawn’s birthday. There were five or six of us there and we had fun walking around the area in the warm evening air. We ate dinner with the rest of Dawn’s rather large family, then set about walking around, talking and goofing off. Come dusk, we snuck through the farm fields to the back fence of the drive-in to see what was playing, nothing we were really interested in, so we rambled off. Eventually we ended up back at the house, it was one of those nights with very little moon so night time marauding was out. We played some games, picked on her older and younger brothers, and then Dawn pulled out the Ouija Board.
In my defense, I’d never seen one. I had no clue as to what one of these things was for, and the basics of it were explained in a very fuzzy manner. It looked like a load of poop to me. You ask this piece of cardboard with an alphabet on it a question and ‘magic’ would guide the fingers of the players to spell out an answer. Can you say “duh…”? So I watched them play and saw what I expected. They would ask silly questions like, “who will I marry?” and receive the answer of the name of the boy they were currently “in love” with. They wanted me to ask, when I refused they asked for me. Since I wasn’t ‘involved’ with a steady boyfriend, it spelled out the name of her Dawn’s older (and very interested in me for some reason) brother, Shane. Well…I didn’t like Shane…not for any particular reason I could put my finger on other than he just wanted to shag the girl with big boobs…so I said “like hell I’ll marry him”. Which for some people would have opened up a whole new attempt for the universe to prove a youngster wrong…but for me…no… Instead the board spelled out “Traci do not cuss”. Which I got a good laugh at… then for fun goaded the two holding the triangular piece of plastic with their finger tips with “and just who do you think YOU are to tell ME not to cuss?”
Well, to the surprise of everyone there, it spelled out “your father”. The confused looks shot around the room were followed by momentary panic as several made the very logical leap that my dad must have been killed in some horribly tragic accident within the last few hours and in my mother’s state of deep anxiety she couldn’t recall Dawn’s parents’ phone number. (remember this is the age PRIOR to cell phones). The use of the term “father” was telling to me, for within my own mind I always referred to my natural father as “father” and my stepdad as “dad”. So, I brushed off their efforts to get me to call home and instead asked them to resume the game. Somewhat reluctantly, because now they no longer saw it as ‘just a game’ either, they agreed. So I posed the question to the board, “if you are indeed my father, what is your name?”.
To my chagrin, the board spelled out what no other person in that room outside of myself, knew the answer to, his full name, first, middle and last, spelled correctly. At this point in time, I see now in hindsight that I could have reacted in several different ways. I could have fallen over myself with glee and attempted to have a discussion with a man long dead, and gain some answers to the litany of questions that had built up in my mind through the years. Or I could freak completely out and run from the room. Or perhaps just sit there dumbfounded not knowing what to do. But I did none of those. Instead my inner sense, which had first pinged alarms when the board spelled out ‘your father’ started screaming in alarm. I felt the presence of something very, I won’t say evil, I won’t even say “bad”…but just something wrong. All sorts of clichés started running through my mind, ‘a wolf in sheep’s clothing’ and ‘don’t judge a book by its cover’ and ‘appearances can be deceiving’. I just rather instinctively felt that whoever or more aptly, whatever, was feeding the information through that board was not my father. It was something trying to make me think it was my father. More mental images ran through my mind, of gates being opened, doorways to nowhere, holes without bottoms. I recoiled from the images because I felt the seduction of it. To talk with someone whom I had always dearly desired to talk to. The someone that I always answered the question ‘if you could go back into time and spend an hour with one person, who would it be?” But there again, I felt was a trap. Like something knew that about me and was using it.
So I decided to challenge the board again. I called out to the room “if you are there and you are real then show yourself to us”. Note to self- it’s never a good idea, when you suspect you are dealing with an unearthly and unfriendly force- to issue challenges like “show yourself” or “give me a sign” or “knock three times on the table”. We stood, some poised for flight, others nursing a full blown scream of terror deep in their throats, and myself with arms crossed in steely (or so I thought) defiance. Nothing happened, but still we waited….the clock ticked ticked ticked…nothing. After what seemed a awful long time, we all released the air we didn’t realize we were holding and glancing around the room at each other fell into the age old “boy were YOU scared! hahahahaha!” routine of people trying to cover that they were scared too but unwilling to admit it. It was after a few finger pointing laugh sessions that the room grew oddly silent as one by one we noticed something in the window. Remember, it was a dark moonless night and naturally we had the lights off with only a candle or two burning, for ambiance, of course. But there in the window was a face. I semi-translucent, eerily glowing completely bodiless face. I rather suspect I know how a deer feels when it sees headlights headed right for it now. It’s the moment of inaction, of indecision, of pure undistilled ‘what the hell do I do now?” that roots your feet in place while your mind scrambles to come up with a suitable response. For some the response is fairly quick, instinctive ‘fight or flight’ reflexes scream FLIGHT! and they are off to the races. For others it’s a weighing of the odds, can “I win or should I run?” Still for others, like me, it’s a processing of reality vs. what I’m seeing, the odds of what I’m seeing being real and what my gut tells me. In this case my gut was screaming loudly that whatever that was in the window, it wasn’t my father, and more importantly, it wasn’t nice. We all left the room, some running in terror, others running but glancing back over their shoulder and I puzzled at what had just happened.
What HAD just happened? I don’t know. I’ve read this and that, research and hokum, believers and skeptics….none have ever really satisfied my mind as to who that really was that night. Deep down I don’t think it was my father. Can I tell you why? No, no more that I expressed in the retelling above, just instinct and sayings whispering through my mind. I feel, distinctly, that had I embraced the notion that it was him, I’d have gotten sucked into somewhere I really didn’t want to go. Was it a demon of the devil trying to gain a gate way to possessing my soul? I’ve read accounts of just such a thing happening in the Catholic Church’s records on exorcism. Even before I read those accounts, that was what my instincts told me….but where they true instincts? Or did I miss the chance to speak to the one person in history I always wanted to speak to? Doubt, both ways.

Working with EDS

2010-03-30T10:33:00.000-07:00

I try not to complain, really I do... in fact my two doctors both say one of the things they love about me is that I don't complain all the time. They both also say they love me b/c I refuse to give up, and just keep plugging away at life.
Yea....so now they've teamed up to tell me that they think I should "work from home- you know- telecommute"......
The reasoning behind this is that they feel the process of me getting in and out of the truck, dealing with my wheelchair, etc. is putting too much physical stress on my joints. I should stay home, therefore, and eliminate the two trips in and out of the truck each day......
sounds reasonable enough, logical enough....
but FIND a real 'work from home' job! Yea, yea, I could talk to my boss, but I can tell you pretty certainly he will NOT go for me telecommuting. I doubt he will want to make the changes necessary for it to happen, and I can't say I blame him. I wouldn't want my checkbook walking out the door either. Since that is a LOT of what I do.....well.... be logical.
So NOW what?!?!?!
Right now I'm not on "doctors orders" to stay home...they said they wouldn't do that to me "yet"..... and I haven't said anything to the boss either. I'd love to find a real job that I could do from home that would pay decently. I make a decent salary now and that is going hand over fist to get me out of debt (raising kids with an ex that didn't believe in paying child support didn't help) and what little extra I have is going towards building the handicap accessible house I need for my wheelchair.
I don't want to go on disability. For one thing, I don't want to be in the hole for the years it takes to fight it, for the other, I don't want someone telling me I can't go fishing b/c I don't work and am on disability..... it's bad enough to have people at the grocery store make comments about the things I'm buying with "their tax dollars". Usually I look them in the eye and say "I work full time, thank you" and they shut up....besides the fact that I think this is BEYOND rude, I can't say I don't feel the same way when I see people I know on disability building a garage, by themselves, from scratch....... or planting 100lb trees in their yard.....or hiking through the state park near our house. I can't do those things and I work FULL TIME..... but still..... I've gotten to the point that I won't go to the store without my husband or a friend. Partially because it's a lot easier with help, but also because people won't say things like that if you are with someone.
I'm just so frustrated. Why aren't there legitimate work from home jobs? Why don't people think you can still be a productive member of society because your brain still works? Look past the wheelchair? Just because my joints dislocate doesn't mean my brain does too....it actually works pretty good. Most of the time. Days like today, it gets a little sideways. I just don't know what to do. I want to work, I want to earn a salary, I want to pay my bills. Why can't I?

Again some more....

2010-03-30T10:21:00.002-07:00

Mmmm... well let's see. Last month while getting into bed I dislocated my left knee. Not at all unusual, in fact, it happens almost nightly. This time was different though. It got stuck. It wouldn't go back into place with it's normally easy little snap. So I fiddled with it, pushed it this way and that, jiggled my thigh around and finally with a loud POP, it slid back. I knew, of course, from the sound of the POP that this wasn't good... which was followed by a rolling wave of severe pain...which was followed by swelling from the knee up towards my hip and down my shin and calf. TDH was asleep and I saw no reason to bother him. So I sat there all night, in such pain that sleep was impossible as was getting out of bed without help. It seemed to take forever for the alarm to go off. When it did, I explained to TDH what happened, called in at work and called the doctor's office. Why didn't I go to the ER? Because ER's are pretty much useless when you have EDS. They don't understand that when you say my knee dislocated this way, you actually MEAN it and know what you are saying. They give you the "yea, sure...." and ignore what you say. I'd rather hold out and go to the orthopedic doctor that knows and understands what I have. Besides, office visits are cheaper than ER visits.
So I waited until the next Monday when they could 'work me in'. MRI showed that not only had I torn the meniscus as I suspected, but I'd also chipped bone off my knee cap. Surgery that Friday fixed it right up. Recovery has been good, well, as good as one gets with EDS in a wheelchair. No Physical Therapy prescribed, PT's don't understand EDS either and would hurt more than help. 10 day check up took out the stitches and all looks good. Come back on a PRN basis.
But the look you get when you say "well I was getting in bed and when I slid my legs under the covers...." priceless....

Bass Pro Shopping from a female in a wheelchair perspective.

2009-07-02T12:12:00.000-07:00

This event actually occurred last summer, but as I need to purchase a new reel for a very nice rod I received, it came to mind again. I fish, I grew up fishing, and I’ll probably fish until I just absolutely cannot anymore. I like it, no… I love it. I love being out on the water, in the sun, with a breeze and the challenge of figuring out what mood the fish are in today, where to go, what bait to use, it’s relaxing. When you lay into a lunker, it’s down right fun. Mainly, I love to Bass fish, white bass, black bass or stripers, but mainly black bass. We also do a bit of crappie fishing, mainly because the TDH likes it. To clarify some points, we do not use live baits and we catch and release with the odd exception of one that was hooked wrong or injured in the process. We’ve caught many very nice sized bass, including 8 and 10 pounders, which we snap quick pictures of and release. There are no fish stuffed on my walls, thank you.
Back to the story……I had a bait caster rod and reel combo that I had just worn out, so after saving my nickels and dimes for a few months we went to our local Bass Pro Shop. We used to go to Bass Pro regularly, have a rewards card, etc, but mainly we bought things we didn’t really need assistance with, a new tackle box, replenishing the soft baits, that type of thing. We hadn’t ever really “used” the associates roaming the floors or the reel counter staff. This particular day, we made a bee line for the reel counter and had a pretty good idea of what I wanted. The rod I had was fine it was the reel I’d worn out, so I was out to buy a nicer reel. We approached the reel counter and the associate was busy, so TDH and I began looking at reels… he had his eye on a new one also, but he uses spin casters. When the associate became available, he approached my husband who told him he was just looking, but that I was here to purchase a new reel. This gentleman was an older fellow, with a white ring of hair above his ears, a pleasant smile and a Santa Clause belly…. He’d make an excellent Santa…. Which made me smile…. But the smile quickly faded as he completely ignored me and asked my husband what reel he was going to buy for me. TDH told him, she’s buying what she wants, I’m just along for the fun of it. This seemed to confuse the associate some, so he tried again. He told TDH that the spin caster reel he had in his hand would be a most excellent reel for me. TDH laughed and said “she hates spinners, she uses bait casters, that’s why SHE is down there looking at the bait casters.”
SO this really confused the guy. Trying to make it even easier for him to get the grasp of, TDH wondered off to eyeball some new hard baits, leaving the associate no choice but to come my direction, which he did. Now….. this is my normal shopping habit- I go, I pick, I buy, I leave. It takes longer to get my wheelchair out of the truck and back in the truck than it does for me to make up my mind, yet another aspect of a female shopper that seemed completely lost on this associate. I had pretty much made my mind up it would be one of two possibilities. The most likely was an Abu Garcia Revo. The next 15 minutes was comprised of me having to convince this associate that I indeed DID want a bait caster reel, and that I indeed DID know how to use one and had been using one for quite sometime, and that this was, in fact, a replacement reel. Then I completely blew his mind by asking for a left handed one. It’s fairly obvious that I’m right hand dominate, however when you have EDS you learn to use both hands because it doesn’t take a whole lot to wear one out. This way, you can switch up and keep right on going. Works with fishing, works with computer mice, works with the 10 key calculator. He argued with me about the type of reel I wanted, the left hand set up and then proceeded to argue with me about the line. I like braided line on mine. TDH can’t stand it on his. I never thought much about it, and usually we loaded ours at home anyway, but he offered to put it on for free, so I said sure. When I went over, picked up the line and brought it back, he proceeded to argue with me about it also. At this point, I’m getting a bit frustrated, so I said, okay fine, I’ll just do it at home. He said no, no, he’d do it. Then I asked him to only put a certain amount on it, even showed him with my thumb nail exactly where I wanted it filled to, no higher. He argued with me about this also, so I said, okay fine, I’ll do it at home….oh no, says he…and off he goes to fill it up.
While he’s doing so on his fancy little machine I wondered off to replenish my stock of hooks, sinkers, worms, lizards and pacachunks. He found me in the pacachunk isle with my new reel in the box and the box of left over line. He dropped it in the shopping basket and noticed that I was having a hard time reaching a particular bag of pacachuncks that I wanted. Being the outstanding gentleman that he is, he offers to grab it for me, but then sees what it is I want and proceeds to begin a whole other argument about why I want that particular one. During this discussion he peers into my basket and digs out my hooks and starts questioning me on my selection there also. So I explained I use these hooks this way with the pacachunk. His words, and I’m not kidding, “Impossible”. Really? He then launched into a monologue about how this wouldn’t and couldn’t work and I’d never catch any fish this way. I was pretty annoyed at this point and couldn’t help but wish I had a picture of the very handsome 8lb Black Bass I’d caught the weekend before with this very set up. I opted instead to explain to him that I use it all the time with great success. He accused me of lying.
Okay….I’ll tolerate quite a bit, but that just was enough. Luckily for this associate, TDH wondered up at this point and, thankfully having missed the prior arguments, was blissfully unaware of the situation. So, I said “honey, will you tell him about the fish I caught last weekend, the big one, not all of them.” TDH proceeded to tell him how I’d laid a nice shot up on the edge of the bank and just snuck my little pacachunk past some brush when WHOMP…this nice big bertha bass took it and ran…he was still pumped up about it, so we got the whole demo of the flip cast, the playing her out until she got in the boat and my being kind enough to let him hold her before I put her back. The poor associate just stood there, dumbfounded….”you released an 8lb black bass?” Yea, we always release…we want them to go make more little bass! Then, he just HAD to put the icing on the cake…. Not only has he told me that I:
Don’t know how to fish
Don’t know what reel I should use
Don’t know how to use a bait caster
Don’t know what line to use
Don’t know how much line to put on the reel he didn’t want me to purchase
Don’t know what bait to buy
Don’t know what hooks to buy
Don’t know how to rig said bait to said hooks
But now he adds….
Must have just been dumb luck.
I love my husband, because he still didn’t get offended… he just said “Dumb luck? No, she usually slams me and the guys we fish with pretty regularly”. Now…I’m sorry, but at that point I was done, so I just rolled off. I was SO done that I just wanted to hand the basket to the nearest, different, associate and leave the whole mess behind. But, TDH caught up with me and convinced me to go on and check out. So, I did. The girl checking us out asked if we found everything we needed, to which I responded yes, but that the associate at the reel counter was a male chauvinist pig that didn’t think I knew how to fish, what reel or baits to use and I didn’t really appreciate that. She, naturally, said nothing.
Since then, we’ve more or less quit going to Bass Pro Shops. If we just can’t find what we need else where, then we will go. So it was with some dread and trepidation that I began the hunt for a new reel for this new rod. I pretty much already know what I want, and I know that Bass Pro is likely to have the better price on it too, but the very idea of getting put through that same experience is just not worth it… I want the new Abu with the flippen switch, but I really wanted to see it, hold it, feel it and see if it’s worth the extra cash I’m going to have to save. It’s about $100 more than getting another Revo. Is that little switch worth that? Without seeing, feeling, holding…I don’t know…. Sigh….
So…we received gift cards to, want to guess…..Bass Pro Shops. Apparently OTHER people can figure out that we are serious fishing nuts, but not Bass Pro Associates. We were in Springfield, you know….the HOME of Bass Pro Shops…so we went. TDH went to check out a new fishing jacket, while I made my way back to the reel counter… He caught up with me at least 20 minutes later, still waiting there, being completely ignored by every available MALE associate. As soon as he walked up, one greeted him and said he’d be “right with us”. I shook my head and left, explained to TDH that the entire time I waited there, obviously looking at reels, picking up different ones, etc…not ONCE had ONE single associate even acknowledged my existence. He wanted to go back and say something to them, or stop at the customer service counter, but we had a long drive home still to go, so I said no thanks.
Will Bass Pro get my money for a new reel? Probably…it was a nice gift card, would be a shame to waste it…but odds are I will by it online, cross my fingers and hope I do like it.

Ranting

2009-07-01T17:43:00.000-07:00

So, I’ve been a bit remiss in my regularity of posts….big surprise. Actually, if you know me, you would be surprised. I lean heavily in the control freak direction and I’ve always had a compulsion to write. The whole reason I started this blog was the advice of the geneticist that diagnosed me with EDS. He said I should keep a daily journal of how I am doing, what popped out, what hurts today, good days, bad days, pain levels, etc. I received much the same advice when I joined the EDS support group on Yahoo Groups that he also recommended. He said “The only people who really understand EDS is other people with EDS. They will have tips and tricks to deal with the pain and dislocations that no one doctor is going to have.”
So… I took the plunge on Yahoo Groups and joined. It was a tremendous relief in a lot of different ways to be able to communicate with people who are just like or nearly similar to me. I can’t begin to explain the sense that one gets when you can post an email that says “today I was doing absolutely nothing out of the ordinary and my hip popped out of joint” and get 20 replies of “oh man, I hate it when that happens!”. To put this in context you have to understand that when you seek medical aid to either get said hip back in it’s socket or to at least be positive your own effort to get said hip back in socket was successful persons in the medical profession have a tendency to look at you like you’ve lost your blood freaken mind. Usually it’s the “lean back, cross the arms, frown and say “I see” stance”. The next question is “what kind of drugs do you want?” When you reply, “well, none really work on me, so none will be fine, I just want it (either put back or to make sure it’s ) in the right place”, well, the “lean back stance” gets so bad I’m surprised they don’t fall over…. After standing their dumbfounded for a moment, you get the “rapid chart flip” maneuver, frequently accompanied by a series of “ah” and “uhm”.
The immediate response of any “well trained” medical staffer is that a person who has dislocated something MUST be in severe pain, and since EDSers do it so often and we have such an obnoxiously high pain tolerance that we generally lay there like docile Labradors awaiting a petting, the assumption is made in mere seconds that therefore we MUST be drug seekers. When drugs are declined, it takes a few moments for them to switch gears and rapidly think of any way possible the declination of drugs could be used as a ploy to get drugs. Watching their faces is a bit like watching a dreaded soap opera on a weekday afternoon, entirely predictable, easily readable and disappointingly shallow. Most quickly come to the conclusion that you are only bluffing and will continue to offer the medication in hopes that you’ll say “oh alright” and they can say “AhHa! Told you so!”
Nurses, doctors and other medical professionals deal with the sick and injured daily. Like anything else they build up and immune system to it. The wounded or sick, who doesn’t deal with it daily, has no immune system to it and therefore reacts to everything from the gut, in the raw. Which drags me back to the ER staff assuming things the way they do when presented with something that goes against everything they’ve been taught. They’ve an immune system response to just about any situation you can imagine and probably some you wouldn’t imagine should I offer to pay you. The typical response is to try and force you, the square peg, into the very logically round hole they are used to. It doesn’t bode well for either party.
In my case, they didn’t even bother to send a doctor in to see me, I only rated a FNP. She was vaguely the shape of an old school orphanage running neo-control freak, complete with grey hair and that “I need stronger reading glasses” way of looking down her nose at you. She determined that I must indeed be in some kind of pain because my blood pressure was abnormally (for me, which I provided proof of) high and therefore I MUST have some type of medication to help it. I handed her a list of medications printed straight off of the G6PD website and said, find one that won’t kill me and we’ll talk. She settled on Tylenol 3 with Codeine because it only ranked “low” on the Risk Scale of the list. I tried to tell her it wouldn’t work, but hey, what do I know? I’ve only been living in this body for 40 years… Still, I obediently took the stupid waste of money pills, because she made it glaringly apparent I wasn’t going to find out if the stupid hip was back in place properly or not without submitting to her authoritarian rule. Did it help…no. Lying flat on the bed with the lights off helped. An hour or so of that and the swelling had gone down significantly, but the Charlie horse cramping wasn’t letting up. Really, the only reason I went to the ER was because one of my coworkers noticed my foot was a lovely shade of purple. Of course this had resolved itself after laying out flat on the bed for an hour or so waiting for nurse ratchet to come give me the once over, so that was meet with another raised eyebrow of disbelief. Imagine that. Even the triage nurse must have gotten that one wrong…..
That, was last Wed. One week, 2 days off and 4 straight days spent lying flat, with potty break exceptions, it’s doing okay. In typical EDS fashion, the swelling has gone, the pain has not, and I know in the back of my mind that this just means from here on out my hip will dislocate without provocation. After all, I was IN my wheelchair when it dislocated. My circle of life once again draws closer to me. Where as before it was “use the chair at work and when you are going to be doing things like shopping” now, it’s use it or don’t move. I finally understand how a wild horse feels when it gets stuffed into a corral for the first time. It’s nearly suffocating until you adapt. I will adapt, don’t really have an option, but that doesn’t mean the adaptation is pain free. The struggle to give up a little bit more freedom is a tough one, especially for an independent pain in the butt like me. So, here I lay, with laptop propped up on pillows watching crappy re-run TV and waiting for TDH to get home. Nothing better to do but vent a bit of this frustration on the uncaring public….who may or may not stumble across this at some point.
Which brings me back to the beginning, my seeming inability to post regular blogs…..I must confess, it’s all mental. 100%. Keeping a “daily log” of all that crap felt far too much like being a cry baby. Stating the facts of the matter gets obnoxious enough. Writing about it daily? Kind of goes against the grain in my brain that says don’t dwell on the negative. It just seems like reinforcement of negativity by writing it down. After a bit of harassment I opted instead to make myself write a short “today” note to stick in my “little book” that I drag with me to each doctor apt. There, I write down everything the doctor says because I know I’ll forget it, and half the time they do too because they see far too many people…. Anyway, I gave it a try, for two weeks. The information was reveling, to say the least. Even being stingy on my comments, it’s obvious to me now that working full time is killing me. Which I don’t want to admit, because the doctor told me that one years ago. I dislike doing that, being wrong, but what can I do? I’m not going to quit or go on disability, but I still don’t like admitting I was wrong. Which, by the way, twircks me in other ways. I know someone who has EDS who’s been on disability for 15 years, but she rides an exercise bike and lifts weights for therapy…… I can’t do either…. But I don’t think I could qualify for SSD. Enough for one day….

My Review of Tex Mex

2009-07-01T04:17:00.001-07:00

Onlineshoes.com

Youll love the simple style and superior comfort of the Tex Mex sandal from Aerosoles. The leather upper features an adjustable strap with an eye-catching silvertone buckle. The faux-suede covered, cushioned footbed lends long-lasting comfort, while the textured rubber sole provides grippy traction...

Cute and very comfy

TH Missouri 7/1/2009

Sizing: Feels true to size

Width: Feels true to width

Pros: Comfortable, Cute, Durable, Breathable, Stylish

Cons: Needs Break-in

Best Uses: Work, Barbecues, Travel, Everyday, Going Out

Describe Yourself: Conservative

Shouldn't have been surprised, Aerosoles are usually great shoes. These are more comfortable than I had hoped, while being slick enough to wear at work on hot summer days.

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Everyday things

2009-07-01T04:14:00.000-07:00

I'm behind on posting, imagine that.... I will write some tonight!

Back from Baltimore

2009-04-20T18:38:00.000-07:00

4 days and 5 nights in the Westin Hotel at BWI Airport, which isn’t really true, if you are anything like me, or had similar experiences, an “airport” hotel is to be anticipated with dread. The Westin at BWI (Baltimore-Washington International Airport) is nothing like the “airport” hotels I’ve known. It’s just far enough away that you never hear the planes, but just close enough to be handy for coming and going. We were surprised when we plugged in our Garmin Nuvi 260w and it routed us not to the nearby Interstate, but out the back way to our hotel. It was a mere 6 miles of twisty tree covered lanes that wandered through patches of Maryland National Parks and the occasional house. Perhaps it’s because we went in April, or more likely it’s because TDH and I are just nature nuts, everything was brilliantly green, the trees towering, the under-canopy trees flowering, and the smell was fresh and earthy. Spring truly had made it to Baltimore, unlike here at home where Old Man Winter and the Spring Maiden seem determined to battle it to the death. Even yet tonight there is another frost advisory, but Friday’s high temperature is supposed to be 80….ah, Missouri… but anyway…in Baltimore, it is spring. We arrived in a light drizzle, on Wednesday it poured rain all day long, with a high only in the 60’s, much like we had just left at home.
Tuesday we arrived at BWI around 2 in the afternoon. After retrieving our luggage and the rental car, we had the pleasant and relaxing drive to the airport. We only saw one other car the whole drive! Much better than hitting the major annoyance of an Interstate! We’ve never stayed at a Westin before, so we were very pleasantly surprised when we arrived to find a wonderfully appointed 4 star hotel. (I took a chance on a “deal” when booking and was able to land the Westin at the same price as a local 1.5 star hotel booked for!!!) It was amazing. Quiet, clean, spacious and the requested “handicap accessible” features couldn’t have been better. There was a very deep bathtub, a roll in tile shower, very deep comfy mattresses, down pillows and down comforters. We both felt safe and secure, which was important to us, given the “warnings” we’d received about being in or around Baltimore or DC.
After checking in and settling in, I pulled out the laptop and hunted down a pub for dinner. Neither of us wanted to change out of our traveling jeans and sweatshirts, but we definitely wanted to taste the local fare. We settled on the James Joyce, and Irish Pub, in the Inner Harbor. We were not disappointed. The décor was aged, with great wood throughout, the decoration was what you’d expect of an Irish pub, by which I mean heavily influenced by both Ale and Soccer. At home, TDH and I have a policy, if you walk in and it SMELLS like fish, you leave. By the time fish SMELLS like fish, it’s bad and shouldn’t be eaten. The James Joyce passed the “sniff” test with flying colors. In fact, it didn’t smell like a typical “pub” either. No lingering beer smells, or smoke smells, yes, JC, MO STILL allows smoking in restaurants and bars…which is why we don’t’ go much. We arrived just in time for Happy Hour, which meant half-price appetizers. Following our theme of the week, don’t do what you do at home, don’t eat what you can eat at home…we ordered the Crab and Artichoke dip appetizer, followed by two plates of Fish and Chips. The dip was really good, and just what we needed on our empty stomachs. The Fish and Chips were fantastic, the fish was so fresh it had no odor at all. It was soft and flaky on the inside, wonderfully crunchy on the outside, and very reasonably priced.
When we finished we headed out and wondered around the streets until we found a chocolate shop conveniently located across the street from a wine shop. The Glarus Chocolatier has handmade Swiss Chocolate goodies ranging from truffles to hot chocolate mixes, hand blended and packaged in old fashioned brown bags. They are, as you might expect, not exactly inexpensive, but pop one of those truffles in your mouth and you will willingly hand over the cash. There is something magical about fresh chocolate, it is just much better than the sometimes months old stuff from the local grocery. It’s also much more satisfying, taking only one or two truffles to satisfy instead of a giant sized candy bar. We settled on just a couple apiece, and headed across the street in search for a wine to go with it. We landed at the Bin 604 store. The woman there was very knowledgeable and pointed us to several choices that were perfect for toting back to the hotel. Which we did, and neither the truffles nor one of the bottles of wine survived the night. We relaxed and turned in early.
Since we didn’t have to be anywhere until Sam’s graduation at noon, we closed the black out curtains and snoozed until our wakeup call at 10. A nearly unheard of event at home… Sam’s graduation was very nice, we were so happy to see her! I know, we just saw her at Christmas, but she IS the baby, and it seems a bit harder to let them go. It poured rain by the barrel full all day, so it was perfect to be inside where it was warm. After the graduation, we spent a great afternoon diddling around the Arundel Mall, rounding it out with dinner at the Medieval Tymes dinner show. Sam had never been and it was her graduation day. The show was good, the horses beautiful, the food tasty…by the end of it, we were all full and ready to head off to bed. We delivered Sam back to the base and returned to the Westin for a glass of wine and a good night of sleep.
Thursday dawned without a cloud in the sky and a high temperature in the mid 70’s. Nothing short of completely gorgeous out as we picked Sam up from the base and headed for Annapolis. Annapolis is a treat with great old brick buildings, cobble stone streets, neat little mom and pop shops, a clean harbor and pleasant people. We had lunch at Chick and Ruth’s Deli- home of some very famous sandwiches- and visited by some very famous people. It’s a quaint little hole in the wall deli, complete with the friendly “grunge” feeling, where they serve artery clogging sandwiches and fries, breakfast items and desserts. There were several choices marked “healthy” but with the quantity of grease hanging in the air, I think a person could meet their fat quota for the day in one deep breath. It was GREAT. Luckily, I had the foresight to declare this vacation “Fat Week” in lieu of my more typical “Fat Day”. David had the Philly Cheese steak, Sam ordered a “single” cheeseburger and I rounded us out with a Patty melt. David unwisely ordered a Whole instead of the Half, which turned out to be more than even he could eat. My Patty Melt was delicious, but Sam’s “single” cheeseburger was off the charts. Huge! Had to be squished down just fit it in her mouth, for those of you that know Sam, that’s a feat! It was all good, and followed off by more strolling around in a vain effort to walk off some of those calories. That is, right up until I spied a Cupcake shop…. I only had ONE! It was a good one too! We then found the “Pine Away” shop. They hand make furniture to your specifications, but they also have a great assortment of random things from all over the place, many made by hand from artists the owners have sought out. I walked out with a pair of hand made Sunflower earrings, a hand hammered metal fish that is destined for my kitchen wall in the new house, a very large hand carved leaf to hold things sitting on the coffee table and a pair of great hand carved wooden ducks named Parker and Emily, who will grace a spot on the kitchen counter top. I also made off with their card, and the idea wiggling in the back of my mind that TDH just might get that hand carved unique wooden front door he’s dreaming of…. We shall see…
After Annapolis, we headed to Mount Vernon, the home of George and Martha Washington. It is a magnificent place, the view of the river breathtaking, the enormous girth of the trees impressive. One tree in particular was just something to behold. A Tulip Poplar planted by George Washington 230 some years ago. Its girth is so enormous that I stretched both arms out wide and only managed to reach about a quarter of the way around it. Simply awesome! We didn’t tour the house, it’s not exactly handicap accessible, but the rest of the grounds are great. The folks working there are very accommodating also. We loved the grounds and the gardens so much that we didn’t feel short changed by not getting the house tour. We then picked up the ‘boyfriend” at the Metro station and returned to Mount Vernon Inn to have dinner. It was very good, the atmosphere was great, and on our way out the door, they steered us off to a side room and gave (those of us old enough) a glass of Port to round out our dinner. We then dropped Sam off and headed back to the Westin.
Friday dawned, clear and bright again. Sam was not feeling well, the release of stress after graduation caught up with her, allowing a nagging sinus infection to run rampant. She called to say she was going to spend the day in bed sleeping, so we jotted out the door for some breakfast, and then came back for a nice fat nap ourselves. TDH slept longer than I, so I tripped down to the indoor pool and did laps before finishing off in the hot tub. Both were sparkling clean and I was surprised by the lifeguard on duty. I don’t think I’ve ever been to a hotel that kept a lifeguard on duty. After cleaning off the pool, we headed out, spending our afternoon roaming around Baltimore and taking in sights like Fort McHenry and the Homewood house on the grounds of John Hopkins University. We cruised through Fells Point and ended up back at the Inner Harbor’s Little Italy where we ate dinner at Da Mimmo’s Restaurant. Da Mimmo’s is amazing, if you ever are in Baltimore, I’d highly recommend it. It is major expensive and worth every single penny. For TDH and me, it was an early Anniversary present to ourselves. We set a new all time high $$ for a meal for us, but we didn’t care. The food was excellent. TDH had the Sea Bass, I had the Lobster with Brandy cream sauce. The chef voted “Maryland’s best” signed our wine bottle, which we brought home as a souvenir, then we stopped by Glarus for more truffles and Bin 604 for another bottle of wine.
Over all, Baltimore is a great place. There is a heavy police presence, especially in the Inner Harbor area where you can find one on nearly every city block. I’ve heard the horror stories of crime and what-not, but we saw nothing of that. People moved about freely, women walked unaccompanied down the street, even late at night, and there were BMW’s, Lamborghini’s and various other high-end vehicles parked on the curbside meter parking. No one seemed particularly wary of strangers or fearful of being mugged. Don’t get me wrong, I’m sure there is a fair amount of crime there, but compared to a few other large cities I’ve been to, Baltimore is clean and well patrolled. I can’t say I ever had that “heebee jeebee” feeling that I’ve wandered into an area I shouldn’t have. TDH said there were a couple of places that “bothered” him, but not enough to make him feel like we were in any kind of danger. Really, I think for him traveling is hard, it gets him out of sorts, racks his nerves and puts him on edge. By the time we came home Sat night, he was beat. He spent most of Sunday recovering, and bounced back to work this morning quite well.

Results of Logic v Emotion at the doctor’s apt.

2009-04-04T07:36:00.001-07:00

Well, no real surprise there is it? Logic won…. It usually does with me. Emotional did get a jump in once, with a “PLEASE just ONE night of sleep every now and again??? Pleeeese??” Other than that, Logic was in control. Doc was ticked that his office messed up on my Meyer’s Infusion AGAIN…this makes the third time. He was also very upset about the fact that no one bothered to tell him that the last script tried to kill me, and that I’ve been without pain meds for two months, then went on a chew about my blood pressure being up. It was 120/80+, which for “normal” people isn’t high, but when you take into account mine is NORMALLY 90/60 +/-, that is very high. So, he wrote me a new script for a different pain med- the “sister” to Lyrica, which I had to quit taking after a couple years because of a build up with the side effects. Hopefully this new one works without side effects for a while…. It’s been a couple of weeks, and the script just arrived in the mail today. He made me promise to call and INSIST I get a call back from him if this medicine tried to kill me…or I just needed to change the dosage. And you wonder why I drive an hour and a half one way just to see him! I can’t wait to try it tonight.
Time for my “6 month” update on the Breast Reduction Surgery…. Yea, it’s been 6 months… technically, it’s been 6 months and 3 weeks-tomorrow. My scars aren’t “completely gone” as the literature said they would be. I expected that though, what with the EDS. They don’t really bother me much, but I’m still not wearing “real” bra’s either. The side incisions are still the most tender, and that’s where a normal bra strap sits, so it’s a no-go for a bit longer. I did buy some Bali Sports Bras at Sam’s Club this weekend- 2 for $10…. XL- even though they are reduced they aren’t B’s or even C’s…. these have the thin little shoulder straps too, which worried me. I wore one of them Sunday, wore the other one today. They don’t have the little strips of elastic with clips in the back, they just slip on and are all stretchy, so it’s actually pretty comfortable. Surprisingly supportive also, for a larger bust sports bra without a bulky racer back and obvious seams. You could wear these under t-shirts and the like without any problem, I think. I got white and nude color, so we’ll see. Now I just wish I had an excuse to go back to Columbia to hit Sam’s again and buy a few more sets! They always sell out of stuff so quickly and then never get it back in again. Kind of like those Field and Stream sunglasses I adore…. I bought 5 pairs of those, and I’m on my last one…. Can’t find them any where- I even called F &S!
At any rate, it’s been 6 full months, I’ve kept my weight under control, and I feel better (mentally) about myself than I have in years. Course that’s off-set now by the influx of wrinkles, age spots, laugh lines and crows feet. What the heck, though, I’ve earned them! All the kids are “grown” and out on their own, that causes even more wrinkles…you wouldn’t think so, but it does. You can’t help but wonder how they are “really” doing, not just the “Mommy reports”… you know what I mean. I definitely feel lucky, however, in that we have good relationships with all three of them. They call home in good times and in bad, for advice, for a shoulder to cry on, for someone to say “uh-huh” while they rant at the injustices of the world. I feel very fortunate that all three of them are our friends, not just our children. Which isn’t to say that accepting your child being an adult is a gravy train; it isn’t, sometimes it’s just plain difficult not to fall back into “parent” mode, but you have to resist that, because they ARE adults. I stray again….sorry, it’s the ADD . I recently purchased a new swimming suit. A tank thingy, in boring Navy Blue…. I ordered it, because I didn’t like anything I found locally, and tried it on the day it arrived. Much to my dismay, I liked it. Really. I haven’t liked myself in a swimming suit in forever.

Emotion vs. Logic

2009-03-20T15:07:00.000-07:00

Sometimes, life just sucks. There really isn’t much more to say than that. It’s just a fact. Everyone has days where they wish for nothing more than a rewind button, a “do-over”, a “this can’t be happening”, or what ever. It’s nothing new, in fact, today we have considerably less to complain about than people decades and centuries ago. The majority of us live past infancy and childhood, survive being teenagers and manage to live as adults. One hundred years ago, the majority of babies didn’t make it to age 3, if you did, chances where against you making it to age 13. If you made that milestone, you were, for all intent and purpose, considered an “adult” by other members of your family. Boys were often pulled from what little available educational resources to work full time on farms in rural populations, or in factories in cities. Girls were either home helping their mother take care of other siblings, or farmed out to factories, as maids, or sometimes worse. Mothers lost children to things like step throat, fevers, flu and husbands to accidents because of the horrible working conditions in factories, or the lack of safe technology in farm equipment. Husbands lost wives to childbirth, infections, fevers and pure exhaustion. If you take a long hard look at photographs from that time, you will notice that the people were smaller, but men’s hands where bigger, stronger, like blocks of muscle and bones attached to their arms. Not very many were over weight, food wasn’t that plentiful. Hair wasn’t shiny, eyes weren’t bright and full of sunshine. Life, for them, was hard. Very hard, and when it got hard to the point of near impossible, sometimes the only option was to ship a kid off to a relative that wasn’t having as hard a time. Sometimes members of the same family would end up residing in different states, spread out over three or four other families. Once upon a time the United States Postal Service even made Mailing a child an option. People literally MAILED their child to a relative that could feed them because they couldn’t. Once it became obvious that this was going to create an extreme burden on the Post Masters who had to care for the children in transit, the practice was stopped.
Can you imagine? Mailing your child to a relative? Can you imagine having to face the fact that you can’t afford to feed your child, and that the best thing for the child is to MAIL them to a relative? One you probably haven’t seen in years, and don’t honestly know if they are doing any better than you, or will take care of your child? Now, it this time we as parents, feel guilty if we can’t afford a Wii, or a $100 pair of shoes, and think nothing of dumping a $6 meal of cheeseburger and fries in the backseat. I know, logically, that there are families out there that are in this position today. Yet another go around of the financial crisis has hit the nation. Once again fueled by greed, just as it was in the 30’s.
Did you know that the worst act of domestic terrorism prior to The Oklahoma City Bombing happened in the late 1920’s? It happened on the doorstep of JP Morgan bank, downtown New York, just a block from Wall Street. A horse drawn cart pulled up and moments later exploded, killing 20+ people and injuring over 100 more. This came just as the big Crash was beginning, people were disgruntled, loosing money at massive rates, loosing homes, loosing lives. No one was ever tried, much less convicted of this crime. In fact, no one was ever even charged. Wall Street members cleaned up the mess, buried the bodies, and went back to work. There was never a memorial, never a day of remembrance … nothing. This isn’t the first time the financial market has collapsed, and I highly doubt it will be the last. In the end, greed over takes the memory of how bad it was last time, and the whole cycle begins again.
So… DO our “suck” moments now “suck” as much as moments back then? Not in my opinion. Some one like me would have been dead a long time ago, because I used to get strep throat all the time as a child. Not to mention the EDS…. After a short life in a circus, I probably would have died from the hard living. People with EDS are, for the most part, increasingly fragile as they age. Things that 10 years ago I would not have thought twice about, I now have to say “I’m sorry, but I can’t do that”. Have you seen pictures of wheelchairs from 100 years ago? There was no room in society for disabled people… they died. As medicine advanced and more things became understood, more things were taken into consideration and adjustments were made. We began to think that no matter what, every one was entitled to care, to a life, to food and shelter. Seems rather a basic concept to us now, doesn’t it? But 100 years ago, people didn’t have the choice. They couldn’t hardly afford to feed and clothe healthy children, who could afford an un-healthy one? So they died. Families suffered unspeakable heartbreak, sometimes loosing more children than survived. And they didn’t talk about it. They didn’t moan and sob to the newspapers for coverage of their tragedy. They just went on, because that’s all they could do.
Sure, I’m in pain. Every minute, of every hour, of every day, SO WHAT. Do I think those people weren’t? No, I think for them it was even worse. They didn’t have name brand drugs sitting on store shelves just waiting to be purchased. Pills for headaches, back aches, sinus headaches, allergies, colds, flu, heart burn, etc. At best, someone they knew had some knowledge of herbal remedies. IF you had to see a doctor, you hoped they accepted payment in chickens, or potatoes, or home made bread. Cash was hard to come by.
So, here I sit, in the room at the doctor’s office, waiting. It’s been over a month since my pain has been out of control. My blood pressure is way up, to testify to that fact. Yet, as I sit here, half of me is indignant that I’ve had to wait over a month to see my doctor after the last prescription failed. The other half of me, the one more familiar with history, says “oh SHUT UP you cry baby!”. The two halves argue with each other, the modern spoiled rotten side wants to yell and cry and demand satisfaction, retribution for a month of agony, fatigue and suffering. The other half counters softly with, it’s nothing to compare to other’s pain, other’s suffering, other’s agony. And people wonder why I often do NOT share what I actually feel…. It’s because it’s often so conflicted. The emotional side acting childish and impetuous… the logical side acting reasonable and calm. I am subject to the same base human needs, wants and emotions as anyone else…. I just admit it. At least to myself anyway. Then I unleash the logical side on it, and reason it to the ground and make it more manageable. It never ceases to amaze me how many people don’t do that. They let one side or the other run rampant. Believe me, I often get with one side or the other being in control, but more often than not, for me it’s the logical side. Logic is easier to deal with and a hell of a lot less messy than feelings.
Faced with this conundrum, what TO say to the doctor? How to say, the last month has been awful, without being a cry baby? How to get across that this really does suck, for me here in this moment, but that I understand things could be a whole lot worse? I don’t know. The logical side is berating myself as being selfish and needy, the emotional side is throwing a temper tantrum that leaves me near to tears. Both sides are frustrated. Both want satisfaction, but I doubt either will get it. Perhaps the doctor can find a medication that won’t attempt to kill me, but will allow me to actually function in a semi-pain controlled state. This would satisfy both sides, but since I’ve been working on this for 10 years now, the logical side is highly doubtful, and the emotional side is downright resentful of the very idea that I hold out hope for help.
By the way, the finger is no better, and really has no hope of getting better. I saw that doctor this morning. He had a bit of an attitude change this visit…. I think he actually educated himself about EDS in the interim of appointments. He informed me that he had already ordered the kit from Silver Ring Splints and would have me fitted at my next apt three weeks from now. Total reversal from last visit…. He understood that surgery isn’t a viable option, and he actually apologized for not being able to provide a better- faster solution. What a turn around! The first visit his attitude was the opposite, acting doubtful that a finger could even BE dislocated by flipping a blinker switch…. Now, it’s taped to the finger next to it, where it is supposed to stay until my appointment in three weeks….. I guess even old doc’s can learn new tricks, IF they want to. I have to say I’m very impressed that he made the effort, as so many in the past haven’t. He will definitely get good marks from me!
I’ll sign off, as I’ve prattled enough for now…. Will try to write more after I actually get to see the doctor….. and see which side wins out… emotional or logical? Knowing me, it will be logical, and I’ll leave, only half satisfied, and hoping that what ever strategy we come up with works….and waiting the two weeks for the medications to be processed via the prescription mail service….

March 3, 2009

2009-03-04T17:33:00.001-08:00

It’s been, what, over a month now that my meds have been messed up? I did refill the Ultram that Dr. Jackson’s office called in, but it was just making my stomach hurt more than it was actually helping the pain, so I quit taking it. The stomach is back to being pretty much awful, nothing seems to help much, not the Prevacid or Nexium. At least now I recognize that I was eating to try and compensate for the pain and stomach pain! I’ve been able to control it, now that I know about it, and have dropped the 5 pounds I put on the week after the medication failure, and hold that weight. It hasn’t been easy, but I recognize now that eating doesn’t make my pain or my stomach feel better, nor actually help the acid reflux, but it sure packs on the pounds. I have to get the pain under control again! I didn’t realize how much better my stomach was doing until it quit. This is miserable. How did I do this before and not go nuts?
I came down with the cold/flu stuff that’s been going around last Thursday (2/26/09). Made it Thurs and Friday at work but spent Sat and Sun on the couch feeling totally miserable. TDH made me stay home Monday (wasn’t much of argument) and brought home NyQuil and DayQuil that night. I know I’m not supposed to take it, (G6PD No-no list) but I was just miserable! I couldn’t even sit up without dissolving into sneezing- which dislocates the ribs and makes that feel SO lovely….. Besides, I could NOT sleep, still, just too much pain. The NyQuil knocked me out for several hours, so I took another dose and slept another several hours. After two nights of that, I feel like a different person. Yea, I still hurt like nuts, but it is just SO much more manageable when you can actually get some sleep now and then. The mouth guard is helping my mouth, but I still have chew lines on my cheeks, so I guess maybe it’s not built up enough? Or perhaps my jaw tendons are just stretching around the obstacle? At any rate, they aren’t nearly as painful, nor the ones on my tongue, which haven’t completely disappeared either. Have to admit sticking out your tongue and having it look like a leaf off an Aloe Vera plant was rather an interesting experience…..odd, but interesting.
I have to follow up with Dr. Cameron on 3/10 for the finger. The splint he put on has worked well for the middle joint (PIP) but it’s not long enough. It’s not covering the end joint (DIP). I’ve begun taping that a little more strongly to give it more support, but that isn’t working all that well. And…being the BRILLIANT person that I am, I keep forgetting and instead of using my fingers in the flat position to hit the stupid blinker, I’ll catch it with the first or third finger on the side….did I say BRILLIANT??? Yea…so guess which fingers hurt now? Neither of them have actually dislocated yet, only sublexing, but who knew retraining your brain to do something so simple would be SO hard??? The third finger is closer to a full dislocate than the index, which is kind of odd, because you’d think since I use the index finger so much more it would be. Course, that would be like saying “with Normal people”…..No.
I can’t wait to see Dr. Cameron’s Hand PT though! Hopefully she can help with these silly problems. He mentioned Silver Ring Splints, so who knows, maybe those will help? I can’t do the simplest things anymore without something either popping out of place or just flat out hurting so much I can’t take it. Peeling veggies, chopping veggies, opening packages- I’ve seriously developed a love/hate thing with zipper baggies…… I love them, they keep stuff fresh, yada- yada- yada….BUT, I can’t get the stupid things open half the time! Especially the ones that come that way when you buy them, like with burrito skins….. yea…. Whoever came up with “New-Easy Open” on those things needs to play for a day with my hands…. Oh…oh… and let us not forget the lovely “Easy Open- Pull Here” things….. Like on the cheese bags… pull here to open my rear end….. You should see the look on TDH’s face when I hand it to him and say “open, please”. Yea….
The worst though, is both pinky joints I think, but am not for positive, that the tendons are hanging up somewhere between my wrists and knuckle. I’ll be holding something, like a knife to cut veggies, and all the sudden WHOMP, the pinky does this funny little contortion and hurts like a bugger. And Yes….I do chop with both hands… use the 10 key calculator too…..Until it settles down and I can get whatever it is to go back where it belongs forget it. So, I’ve learned to “stage” chopping events. Yea, I’m still my over-anal self that likes to chop all my veggies for the week on Sunday so I don’t have to deal with it after work (when the hands are already tired from using mouse and keyboard all day). So, I’ve gotten so that I’ll go until I feel that tell-tale twinge, then stop and do something else (like surf or update Facebook…..;-p) and then go back again. Sure, it takes 3 times as long to get it done, and many-many-many more hand washings going back and forth from food to whatever, but hey…. I get it done! Speaking of keyboards and mice….. by the end of a work day, I’m done….. gees…. Especially the tendons between the index and second finger on the mouse hand….. too much click-click-click….
I think I know now how an avalanche feels as it starts out this little bit of snow and then builds and builds until it’s a huge mess. At least the avalanche is going to stop somewhere…. I guess I will to, when I’m dead…. Until then, I’m invincible. It’s just the morbid curiosity of finding out just how far that avalanche can slide before it does hit the end that makes me wonder about the dumbest things. I mean seriously, have you ever considered the possibility that one day your fingers/hands might not work well enough to pull up, button and zip a pair of jeans? Really, have you? Or tie your shoe laces? This is a very “real” thing for me… hopefully not for many years….but even now there are so many things I find myself saying “I just can’t, no matter how I try”. Even some of the old adaption tricks don’t work anymore. Like Jars….hate jars…spaghetti sauce is the ENEMY…. So some equally BRILLIANT person came up with an “Easy Open Pouch!”…. My Rear END….at least those you can use scissors on…and do NOT get me started on the most lovely sticky jars like jelly…. …. So much for PB & J’s….which I adore….. Oh….and here is a lovely one for you….toilet paper….yep… no…get your mind out of the toilet…I can still USE it, I just can’t get the dang rolls on the holder anymore. Any idea how embarrassing it is at work to have to roll into the co-worker’s office and ask THEM to put a new roll on the thing because you can’t? I mean COME ON…..it’s TOILET PAPER….. Consideration for the new house- BUY those things I hate where the paper just slides on, you know the ones that are open on one end? Don’t get me started on that subject either….dumbest crap….light switches, stove with the controls on the side or front so I’m not trying to reach across hot burners, OH and don’t forget I can’t turn the stupid KNOBS hardly anymore…..sometimes I really, really hate EDS….. I know, I know…it’s a “Thing” and you can’t hate it….. wanna make a bet?

A week and a day after my breast reduction surgery

2008-09-19T07:50:00.001-07:00

A week and a day after my breast reduction surgery, and here I sit, happily working away from my bed. Everyday after TDH leaves for work, our bedroom gets a drastic makeover, okay, well, it’s not that drastic on a 5lb lifting limit, but hey, it sounds good! The down comforter and sheet gets neatly pulled back, replaced by an old but very comfortable blanket. This way he remains blissfully unaware of the popcorn munching, coffee sloping and pen marks- yes I drop my pens a lot. In fact, currently I can’t find one at all….. An old box becomes the “desk” for the laptop, while the lap desk becomes a working table for notes and workbooks. One night stand now holds the all in one printer and phone, the other holds the all important coffee. I’ve raided every room in the house for pillows of all shapes and sizes and they get used in various ways. From stacked up against the head board for a soft back rest, to under the knees/feet for swelling, and the all important one that wraps around my front to keep the ice packs in place. Yes, I did say Ice Packs, and yes, they are necessary. Not so much for the front, but the side incisions are the ones that have a tendency to get a little swollen and upset. I suppose because the arms are always moving.
The first follow up happened on Tuesday, and Dr. Howard was very happy with her handy work. I certainly like the fact that my shoulders don’t hurt constantly any more, and I’m happy I guess. Not to say that I’m “un” happy, I’m just waiting to decide until the swelling and bruising is less. Every day they look more and more normal and less like the bride of Frankenstein. Dr. Howard removed the steri-strips which helped a lot with the itch factor. The glue doesn’t seem to like me much. There are very few actual stitches showing, just a tail end here or there. Dr. Howard is very good at that. One week later, they look a lot closer to normal than they did a week ago. The swelling is going down, so I’m slowly loosing the look of having “metal funnels in your bra” and more towards normal boob shape.
A rather odd thing has happened though, and Dr. Howard did warn me that it would. I so disliked my boobs the way they were, that I avoided looking at myself in the mirror. I had even trained my brain to only see my face when I was doing things like blow drying my hair. She warned me that would change, and she’s right. I catch myself looking to see what they look like now, from this way, or that way, in this shirt or that shirt. I’m sensing a subtle attitude shift going on mentally also. I’m slowly working away from the attitude of doing everything possible to minimize the boobs because they just aren’t there to minimize anymore. While for a lot of women this is probably a “duh” thing. For me, it’s been a life time of, very successfully, minimizing how big they actually were. Most people had no real idea. When Dr. Howard came in to draw on my breasts (they do this while you are awake and they can make sure it’s going to look normal in the upright position) I had my Mom stay in the room. Okay, I’m a mom, with adult daughters, so I fully understood the position I was putting her in, BUT, I was so good at hiding them I wanted her to see them as they “really” were. Then I felt bad, because she just kept saying “I had no idea they were THAT big”. Again, this was very out of character for me, as I’ve always been very modest. But she understood then, why I’d wanted this done so badly.
Now, I think I look pretty good. The 18 pounds I’d lost prior to the surgery helped a lot, and I’m going to continue that until I get down to about the 25 or maybe 30 pound mark. That would put me in the healthy range I’m supposed to be in. The extra weight off my shoulders is WONDERFUL! That stress and strained feeling I had constantly has faded drastically. It’s not totally, and with the EDS will probably never totally be gone, but it is so much less that I don’t even think about it. I used to come home and take off the bra with a huge sigh of relief. I haven’t worn a “real” bra yet. It’s been all sports type bras to accommodate the stitches. That and there really wouldn’t be a point of buying one until the swelling is totally gone. Still, I haven’t worn a sports bra in forever, so this is new too. Nice, but new. Oh, and I nearly forgot! When standing up, I can look down and guess what!?!?!??! I have FEET. Yea, real feet, complete with toes! Dr Howard said that I’m going to start caring more about the shoes I wear now, since I can see them….. lol…. NOT. The EDS limits my selection anyway, but it really is ODD to look down and not have to move a boob out of the way like a curtain to see the foot.
I have NOT gained weight being off this week.  I’m sticking to my diet plan, 4 skinny days then 1 fat day, repeat. I’m actually eating a little differently just because I’m not getting as much physical movement as I would even at work. Kashi powdered mix, in Chocolate and Vanilla, soy milk, 99% fat free vanilla yogurt, frozen fruits and ground flax, mix and match for breakfast. I found this nifty little “single” severing blender at a “big box” store for $15. Since TDH refuses anything “healthy” it was perfect for me. The little blender part even comes with a sip-style lid so you can just take the whole job with you as you race out the door if you want. Then it pops into the dish washer for easy clean up. Not like the old blenders that have the blades that are separate and it’s a job just to put it back together. Yesterday it was frozen peaches, ¾ cup fat free vanilla yogurt ¼ soy milk- vanilla flavored, and a tablespoon of flax. Viola! Peach smoothie for breakfast! It says it will only do 12 oz, but I’ve stuffed it up to 16oz making doubles, and then have 8 oz for breakfast, 8 oz for lunch. If I do the double up, I usually put a cup of the Kashi vanilla powder in there for the extra protein. I wish the Kashi would make a version with less sugar in it though. Other mornings, like today, I did just the Kashi powder with the soy milk. I usually only mix 1 scoop instead of two, mainly because of the sugar content, and two scoops make it really thick too. Much more drinkable with only 1 scoop. I’m thinking of trying the frozen strawberries with the vanilla yogurt with the chocolate Kashi powder…. We will see… I have been walking down to the mail box to get the mail, and trying to get up at least every 2 hours and move around a bit. Anyone with EDS knows lying still for too long is just as bad as moving too much.
Dr. Howard did give me script Ibuprofen for the pain, 800mg to take 3 times a day. Then morphine as needed and valium for sleep. I tried the morphine and valium to help with the sleep the first few nights, but I quit that real quick. Talk about dreams…. I think that’s what the Beatles were doing when they colored the “yellow submarine” movie. So, I’ve not been taking anything but the Ibuprofen. I can’t say I’ve really needed anything stronger than that. When it gets to hurting, it’s usually because of swelling, so I recline more and add the ice packs. I do find my self needed naps still. The first 3-4 days it was about every couple hours. I’d nap then get up and walk about. Now I can go for 4-5 hours at a time and then pass out for an hour or two.
Well, I’d better wrap this up, I need to log on at work and get some “real” work done….
Monday is another go round of Prolotherapy, so I’ll write more about that then. Wed I see Dr. Jackson, whom I haven’t seen since I started the Prolotherapy or the breast reduction, so he’s going to be surprised. Thursday is my first visit in 7 years to the “girly” doctor…… yea, I know… yell all you want. I’m going, okay…. More later!
T

Prolotherapy on the Knees and surgery

2008-09-10T16:56:00.000-07:00

Okay…. So last time he did the hip and the left knee. This time he really got after my left knee and then some on the right knee. To recap it, both knees sublex to the medial when I take a step or just put pressure on the joint. With slight pressure they will both just dislocate medially. (A light push with the index finger will cause it to go out and then when you release it will come back in with a loud thud.) Dr. Haman seemed somewhat mystified last week when I asked him if he thought it would work on my knee because it isn’t patently obvious that they are that bad. Like anything else, you learn to adapt, turn your feet slightly off, etc. So he had me lay down and then did the standard tendon tests and just looked rather bemused. He said the left one was definitely awful, so he put several shots in it. The shots weren’t too bad.
This week was a whole new ball game. I think the total in the left knee was 9, the right was 5. That’s just counting the holes that are easily identifiable. The Lidocaine patches are still doing a wonderful job eliminating the bruising. I showed Dr. Haman the one that I didn’t put a patch on and it, still a week later, is black/blue/purple. He said he’d never seen anything like it, I said I hadn’t either. I’ve never had anything that just stopped a bruise or got rid of one that had already started. So, he wrote me a script for a box of the patches to use. They were quite expensive, but worth it, I think. I hate walking around black and blue. I’ve actually had people ask me if things are “okay” with me, since I have bruises all the time. It’s a pain to explain that I have EDS, and what that is, and why we bruise, etc. Still it’s helpful because without them my knees would be black and blue today.
The shots in the knees where different feeling than the ones in the hip, I’m guessing because several of them he had to go really deep to get. I know he went way up close under the knee cap on both sides. It’s the first time I can honestly say that something hurt so bad I felt like I was going to throw up. (Not counting migraines, that’s a whole different ball game.) It was intense. Dr. Haman is so skilled at it that it was over in just a few minutes, but gees. Poor TDH was going white too because he could tell how much it hurt. Then you get the effect of the Lidocaine kicking in and numbing up nerves so it’s kind of fun trying to walk, cause you can’t exactly tell where your feet are going to end up. You can feel the feet, it’s just the knees that are kind of blank. So TDH helped me out to the car after we were done visiting with Dr Haman. It took a bit longer for me to quit bleeding this time, and it actually got away and ran down my leg onto my nice new white shoe…… I feel like such a “girl” but gees! They were new(er) and WHITE! Not anymore.
Dr. Haman is such a nice fellow. It’s rare to run across a doctor that will just have a seat and talk about things with you, answer questions without acting like you’re questioning their intelligence. I really like the fact that he doesn’t throw pills at you for everything. He did tell me I should be eating and/or taking Gelatin pills daily to help support the tendons and ligaments. So I did a little digging around and found several things that backed up his statement. I found Beef Gelatin pills at the local health food store, so I’ve started taking 4 of those a day. It actually calls for 4 pills 3 times a day, but that’s just not happening. We sat and chatted with him about the knees and what’s next. He said he’d like to look at my left shoulder next time, since it’s gotten to where it pops out all the time, but with the surgery coming up, he didn’t want to mess with it yet. I’m not going up next week, because I’m not supposed to travel for at least a week after the surgery. I’ll go back up the Monday after that.
So, I started writing this on Tues, and now it’s Wed…. had a little time for the knees to settle down a bit. They were very angry yesterday, with my lower legs and feet swelling up. I had to be sneaky and slip my shoes off under my desk because they were tight with the swelling. Today is much better! The swelling is pretty much all gone except the knee-shots area. The right knee doesn’t really hurt much at all, and the left one hurts more because of a reaction to the glue in the Lidocaine patches. Odd that the one knee developed a red rash, looks almost like a bad scrape, and the other knee you couldn’t even tell they were on. Who knows? I had them on the exact same amount of time. It did do the job on the bruises, there are only tiny ones right were the needles went in. The one on my hip that I didn’t use the patch on is still several inches long and several colors. Funny that I get no pain relief from the patches, but I get bruise relief instead, just proof that EDSers ARE weird. LOL… I can feel a difference in the left knee today. I don’t know if it’s just the swelling or not, so I’m withholding judgment on if it’s worked or not. I know, logically, since it worked so well on the hip it should work on the knees…. But since when do EDSers ever follow what logically should happen? Ah, rarely! So, withholding until more time has passed. Course having the next week off and pretty much told I’m to stay IN bed might actually be good for the process. Give the hip and both knees a chance to finish up healing.
Speaking of being off…. Tomorrow is the BIG or rather REDUCED day….. sorry, little breast reduction humor there…. I know, I’m the only one laughing…. But this morning I opened my drawer dedicated to bras and smiled. It’s the biggest drawer I have, and it isn’t the bra drawer because I have a lot of bras, it’s the bra drawer because my bras are so BIG. After tomorrow…. No more bra drawer! Okay… I’ll probably still have it, but it will be because I have lots and lots of bras. Pretty ones, plain ones, white ones, nude ones, lacy ones, sports ones….Oh….gosh…. I’ll actually be able to wear a sports bra…. What an odd concept! And those little tank thingies with the built in bras! Ohhhhh, I can wear those?? COOL! Wow…. This is going to be rather odd getting used to. I think I’d probably feel completely naked in one of those tank thingies. Oh, oh… and next spring I get to go swim suit shopping! And! And! And actually fuss about them making my gut look big instead of not being able to find one big enough to hold my boobs! Yes, I deliberately said GUT…. For those of you who don’t know me on sight… I inherited from my mother a serious case of no-ass-at-all…… You know, some women balance out because the booty sticks out as much as the boobs, but not me….. I just looked like if you smacked the back of my head I’d fall over from shear gravity.
Okay, so this long day is over and I’m at home on the couch. The bag is packed, the Advanced Directive signed and copies in the right places. Every thing is squared away and set to go. David will be dropping me off in the morning, Mom and Dad will meet me at the hospital. I have to check in at 9, surgery is supposed to start at 11 and be over by 2:30. After that it’s a 23 hour hold, so I’ll be at the hospital until at least 3 on Friday. I had lymphatic draining yesterday, scheduled to do so again shortly after surgery. Should help promote healing, and am going to spend a little time tonight trying to meditate. Anyone who knows me knows that’s really, really hard because I just have a horrible time trying to bring my mind to a stand still, but I shall try tonight.
Love you all! t

Sept 5, 08

2008-09-05T19:36:00.000-07:00

Well, folks, time is running out! Okay, so, not for you so much as for me. In a few short days I’ll be off to yet another Prolotherapy apt with Dr. Haman. The knee reacted so-so to the Prolo, not unlike the hip the first week of shots. I really didn’t think I could see that much of a difference, but Dr. Haman said he could. The second week, I could really tell a difference. So, it remains to be seen if the knee will react as positively as the hip did. I’ve tried really hard not to stress it this week, to give it a chance to do “its’ thing”. I wore my knee brace on Tues but by Wed afternoon I had to take it off because the swelling got to be so that the brace was cutting into my leg. I didn’t wear it today (Thursday) because I didn’t want a repeat of yesterday. It did okay, but I did sneak a stepstool under my desk to keep it propped up. Things have been SO stressful this week, what with me having been off 1 day a week to travel to Kirksville for the Prolotherapy, the Quarterly billing needing done (with all the following reports, taxes, etc) and with me only working 2 days next week before being off for the surgery on Thursday! What stress! When you top that off with Sis flying to her A School in Maryland, her first flight “alone”! Sigh…. Mommy’s anxiety…. But she was great, she called at the airport, and when she got to Maryland she called to let me know she was there okay. I know, I know! Mommies’ anxiety…. … I worry about them all, Jess, Mike and Sam. They are so far from home, so far from where I can grab them up and wrap them in protective arms! Still, it’s the way it is to be. They leave the nest and make lives of their own, choices of their own, walk paths of their own. It’s not so much that I wish they were here so I could “control” what’s going on, just that desire to keep them safe and let them know they are loved. After all, isn’t that all we all want? Too know that some one some where loves us and remembers us daily?
So, as I head into the weekend, where the TDH has volunteered us for the Ashland Kid’s Day on Sat, or Sunday, when he wants to jot off fishing with a old high school buddy (I don’t mind because that gives me a chance to clean house again before Thurs!), or meeting with old friends for a possible dinner Sunday night… who knows? Monday it will be off to Kirksville again for another round of Valium and shots….. The Valium does help, I won’t lie, but I’m actually not as affected by it as some, but it does let me not completely “freak out” when Dr. Haman walks in with the needle…………. I HATE needles! (think the Disney version of Sword and the Stone near the end when Merlin tells the bad witch she has to subject herself to sunlight and she yells “I HATE, HATE, HATE Horrible, whole some SUNLIGHT!” and you’ve about got me and needles)….. I actually (after double the dose of “” normal”” people and Valium) I watched him shoot my knee! Odd…. I think, perhaps, it is partly because I know, logically, that these shots are HELPING me…… still on the flip side, I’ve never let Logic get in the way before! LOL…. I did as the plastic surgeon to update my Tetanus shot while I’m “out” after the reduction surgery.
So, I did kind of put things together tonight…. The “button up shirt” and the “zip up” shirt to wear after the surgery, when I won’t be able to lift my arms above my head, are now neatly folded and awaiting placement in a bag. I don’t have an overnight bag, so I’m rather at a loss at what to pack it in, so far, it’s the gym bag…. But it’s rather large for one overnight stay. I can’t get over the feeling that Dad shouldn’t be working that day, or the next, but since he’s had to take off so much to drive me to the Prolotherapy (with the Valium the dr will not let me drive myself) we just cannot afford for him to take off the Thursday and Friday of the Surgery and recovery…. Which means my Mom and Dad are gracing me with the benefit of their help. I can’t believe they would give up their time to help me out, but without them, I couldn’t hope to have the surgery done. The very idea that next Thursday afternoon I would wake up without these huge boobs… well, as Sis said “I can’t imagine you without them Mom!” They’ve been a part of my life for SO long! I can remember my 4th grade bus driver telling me that “more than a mouth full is wasteful”, or my nickname in high school as “two ton tits”. I can’t imagine what it will be like to wake up with size “C” boobs….. I suspect my reaction will be laughter followed by a prompt falling back asleep.
For anyone out there contemplating the thought of breast reduction….well, keep posted! I will be off the two weeks after the surgery, so I’m sure I’ll be posting about it as well as the second go round in the knee injections of Prolotherapy…. After all, what else will I have to do? I’ll be home, alone, and forbidden to log on remotely to the workplace computer to accomplish anything… I’ll be reading and learning, as always, but so isolated here in my own home. It will be okay, I know this, logically. I just love learning, being challenged, reading, trying, every day in everyway. To be so isolated is more worrisome to me than the prospect of dieing during the surgery! While I sure hope nothing goes wrong, if it does, oh well. I know what is on the other side, and it holds no fear for me! (note to mwef). T

Prolotherapy III

2008-09-02T12:51:00.000-07:00

Okay, today was number three treatment. Taking the Lyrica prior to going was a great idea. The shots were much less painful during and after. My hip is responding so well that Dr. Haman was really happy about it and didn’t feel like I needed additional shots in the low back and sciatica area, but still needed some help in the front where the one was so loose that it was clicking every step. So I got one shot there. I did screw my courage to the sticking point and asked about my knees. He looked at my left and sighed. So, I got (I think because I was trying not to watch) 4 on the medial side, and I think two on the outer, not sure, might have been just one. He thinks the Prolotherapy can tighten up the medial tendon so that it will stop popping over to the inside. I can’t be more happy about my hip! Even though I over did it yesterday with the house cleaning, it still feels better than it has in a couple of years. Now I’m trying hard to contain my excitement about the knee! I’m supposed to wear braces on both knees, but I don’t, mainly because I’ve yet to find one that will actually stay up. The stupid things can’t be that helpful when they are constantly falling down around your ankles. So if the Prolo can tighten it up and make it stable enough that I could actually do more exercise, well, I don’ think I’d know what to do with myself!
So, next week, he’s going to check the one spot still on the hip and see if it needs another, and do the left knee again. Possibly add the right knee and the left shoulder. It was really very sore today still, from being popped out several times yesterday, so he left it alone. I kind of get the feeling that he thinks I’m something of an oddity. I’m actually very healthy and heal from the therapy very quickly, but I’m just falling apart at the joints. He seemed happy about the fact that I’ve lost 18 pounds and didn’t say much about the breast reduction surgery. If I can get my knees stabilized to where I can actually do some “real” exercise that would just be awesome. I know I’ll never be able to run again, like I used to, but I wouldn’t mind being able to take a walk, or a short hike on one of the many conservation tails around here. I really enjoy being outside, and really would like to do that again.
So, it’s only been a couple of hours since the shots, and I’m actually typing this on the laptop in the back seat of the truck while my wonderful TDH drives us home. I’m not supposed to drive myself because of the 20mg of Valium, even though I can’t say it really affects me that much. It is mellowing, but I don’t feel “high” or “loopy” or sleepy. Just mellow. I think I’m just so tickled about the Prolotherapy working for me that I’d be fairly mellow anyway!
Anyway… this next week is going to be a real bugger. Time for quarterly billing at work, and implementing a new program, and gearing up for me to be off for the two weeks after the breast reduction surgery…. Going to be working a LOT of extra hours. Is okay though, I like it. I’d rather be busy than bored. Since the boss man has forbidden me to do any work the first week and half I’m off after the surgery, I went book shopping yesterday. Terry Pratchett (the world greatest writer ever!!! At least in my opinion) has a new one coming out, but unfortunately it’s not out until Sept 30. BLAH! I did preorder it though, Amazon had it for $12 bucks on preorder, hard cover even… so I ended up at Barns and Nobel (we’ve not got any Mom and Pop book shops here in town so I’m stuck with the big box guys). I got a biography on Genghis Khan, a huge book on History’s most famous and infamous battles, and another one on the Roman Empire. I tried to find some good math books, but they were rather lacking in that department. Have to see if Mike’s got any he can loan me again. I rather liked the last one he loaned me. So that should keep my brain occupied for a bit, I hope. Two weeks is a long time for my brain to have nothing to do…. It doesn’t even like shutting down for a nights sleep!

Tomorrow is Prolotherapy III and new medication

2008-09-01T19:47:00.000-07:00

So, tomorrow is my next treatment. It was a week yesterday since my last go round and really, the difference is amazing. This time it didn’t take me near as long to recover from the shot’s themselves and the result with my hip is nothing short of wonderful, in my opinion at least. It is no longer dislocating with every single step! I’m still getting some of the “click-click” in the front part of the hip, which I want to discuss with Dr. Haman tomorrow. I’m also going to ask him about the possibility of doing my knees. They are the worst, and always have been. They both hyperextend to about 45 degrees and in the last few years the tendons and ligaments have become lax enough that they “pop” out to the inside (medial) and back in with a thud. This can happen while walking or if I’m just standing there, you can push lightly with one finger and it will pop out and back in with a definite thud. IF he thinks that Prolotherapy could tighten that up enough to make that quit happening, then I think I’m willing to face down my fear of needles to get it done. Having it done could quite possibly mean I could do things like walk for exercise and maybe even ride bikes again. That would just be amazing.
On another note, the plastic surgeon and I have been experimenting with new medications to help with after I have the breast reduction surgery. The first two were total flops, and I’ve added them to my print out of medications. The third one was Dilaudid. I’ve never had this one before, and she said it was twice as strong as Morphine. Given my prior experience with Morphine (it took the legal day dose limit to give me any relief) I wasn’t too excited about it. She asked me to try three doses and then let her know. Since I have a history of not reacting the second time the way I did the first time, which is why we settled on the three doses to test a medication. The first dose was a wild one. TDH and I had gone to the local car show, something we had been unable to do all summer because my hip was so bad I couldn’t do any walking. With the Prolotherapy, I felt like I could do it, maybe not as extensive as in the past, but a bit anyway. So we did, and by the time I got home I was a bit sore. Then I sat on the computer and paid bills for the month and that just really got it flared up. So I figured then would be a good time to try the first dose of Dilaudid. It did help the pain a little, but boy gees did it wire me up. I took it about 10pm and finally was able to go to bed at 6am. So I wasn’t all that impressed. BUT…. I agreed to try three doses. So the next afternoon I took it about 3 (just incase it did wire me up, but I didn’t figure it would). It didn’t wire me up, it didn’t make me very sleepy, nor did it make me loopy either. I had been warned that “loopy” was a good possibility, at least in “normal” people. What it DID do was just amazing. For about 8 straight hours I was, for the first time that I can remember, nearly pain free. It was so amazing I just crawled in bed about 6 and just laid there. Amazed at just being able to lay there, because usually I have to move every 15 to 20 minutes to keep from hurting so bad. I even let TDH give my shoulders, which are always in knots, a rub. Normally, that hurts so bad that I can’t stand to have them rubbed at all. Then I feel asleep and slept, get this… I slept in the SAME position ALL night long. I can’t even remember the last time that happened. Honestly. I’ve not had a night’s sleep like that since I don’t know when. I felt so good that today I cleaned house like I haven’t been able to forever. Even got down on my hands and knees and scrubbed the kitchen floor. And BOY did it need it! I’m paying for it, put my shoulder out three different times, and I think the last time I didn’t get it back in place quite right. The knees are sore, but I did use a kneeling pad so they could be worse I’m sure. The back is sore, as is the neck, but my house is CLEAN! Yippee! I really wanted that done before the surgery next week. Spring cleaning clean, you know? Now it’s just maintenance for a while.
Sept is pretty much going to suck for me, while I recover from the breast reduction. I’m still excited about it and looking forward to it. More than my surgeon is! The poor thing is a bit apprehensive about operating on an EDSer. I keep telling her it will be okay, but I don’t think it helps. Really, I’m kind of glad she’s like that, because that means she’ll be more careful and more watchful. She listens to me when I say things like “tape my feet together so my hips don’t dislocate while I’m under” and “if I do dislocate too badly for you to just pop back in, call Dr Turnbaugh to put it back”.
So, I’m off tomorrow for more Prolotherapy, and then back to work, trying to get quarterly bills out, so I might not have a chance to post my thoughts on the third treatment right away. We will see.
Good luck to everyone out there!

Prolotherapy Treatment II

2008-08-28T14:36:00.001-07:00

Well, it’s actually been a few days since I had the treatment, I didn’t get to write as quickly as I had hoped about it. I took the prescribed medication to help with the anxiety of dealing with needles…but being an EDSer it didn’t work as well as it should. Imagine that. Still, I managed to get through it again. It hurt worse this time, I guess because the area was still tender from last time, I don’t know. Dr. Haman said he could feel the difference already, and that I had responded so well that I might not need all of the remaining 6 treatments. That made me as happy as I could be at the moment. I actually crawled in the back of the truck and let TDH drive home while I laid there and tried to pretend it didn’t hurt. Ironically enough, I can tell the difference this week more than I could last week. My hip is not popping out every single step I take. I have to put my weight on it and shift to get it to pop out, and even then it won’t go all the way out like it was. I only did it once! Just to see if it really was working or not, and I’m not going to do it again because I don’t want to mess up the progress that has been made.
One question Dr. Haman did ask me, was if my pain was better? I had to answer honestly with a “yes and no”. The painful nerve involvement IS gone, but where the injections where hurt like very deep bruises and since I take forever to heal, they hurt forever. I wish I had some type of pain medication that would help with that part of it. I did use the Lidocaine patches he gave me, and had the same result, the already forming bruises seemed to just vanish. Still hurts like the devil when you poke it, but no awful discoloration to go with it. I think maybe next week I’ll try taking a Lyrica before the apt. I normally only take 1 at night because it does mess with my head, but it is the only thing I’ve found that even makes a dent in my pain. Since I’m off for the day, and TDH is driving, I think it would help a lot. The spray Lidocaine he used didn’t help a bit. I’m sure for “normal” people it helps a ton, but since when am I ever “normal”? Never.
The ride up to Chicago and back for Sam’s graduation was trying at times. TDH did most of the driving, so I could wiggle around and sit on pillows, etc. Travel is just going to be that way, I guess. Oh well, at least I CAN still travel! We want to get out to Charleston to see Mike, and maybe, just maybe up to Maryland to see Sam when she graduates A School. I’ve not had the pleasure of visiting the east coast for pleasure. I did go once, when my nephew was brought to Walter Reed Hospital from Iraq. I’d like to go and actually have the time to look about, eat some fresh seafood. You just can’t get fresh seafood in Missouri. They freeze it and it just is yuck. So who knows, perhaps we’ll make it out there. I hope so. Hopefully the Prolotherapy works and I can really enjoy myself instead of being so limited.

Prolotherapy treatment No. 1

2008-08-19T18:58:00.000-07:00

Well…. I should probably preface by saying, I don’t do needles well. I mean really don’t do needles well. Since Prolo consists of injections deep into ligaments and tendons of the joint, this was an interesting experience, to say the least. During my apt yesterday, I did try to warn Dr. Haman that needles are an issue for me, but he said “I’m good and fast, it will be nearly painless”. I told him it wasn’t the pain that bothered me. I just hate needles, period. Funny thing is I can tolerate IV’s and blood draws for the most part, as long as they don’t look like actual hypodermics. He was absolutely correct, he is lightening fast and they didn’t hurt that much. Neither fact influenced me a bit while I was attempting to claw my way off the table and fight off a complete panic attack. I actually was quite proud of myself because I did manage to stay on the table and not dissolve into a state of complete mental lapse. That happens to be exactly what happened the last time I had to have a shot after having stitches put in a bicycle injury. Took several docs, a couple orderlies and a few nurses to get me down long enough for one doc to get the shot in me, shameful! Why is it we humans, with our big intelligent brains, can let something so stupid completely shut down all of our higher functioning capacity? It was terrifying for me, to the point that my muscles where jerking, I broke out in a sweat, and my previously nice blood pressure of 96/62 went through the roof. But I did it! I managed to stay ON that table long enough for him to get all 6 shots in. After he was done, they hooked me up to the elctrostimulator and let me lay there for a bit. I felt really bad for Dr. Haman! He’s such a good egg, though; when he came back in the room he asked me “So, you still hate me?” I promptly replied “YES!”
He decided that next time; he’s going to have me take a valium about an hour prior to my apt to see if that will help the “slight anxiety” issue. I just hope it works. With my built in resistance to medications that seem to be helpful, I’m not holding my breath. He asked me what I was doing for pain. I told him the truth. Not much. Since I’m so resistant to a lot of medications, I’ve just kind of given up trying. TDH told him the story of the ER trip where they gave me the legal max for on e day on morphine and I was still walking and talking like they hadn’t given me anything. I hope, for my sake, that it works, because even thinking about going back for more needles is, well, anxiety inducing.
As for the actual Prolo well, we shall see how it turns out. Initially, it was okay. The v did numb up some of the pain going on in the screaming tendons and ligaments. However, like many pain treatments, it was short lived. He gave me Lidocaine patches, to put on “where it hurts”. Yea, that didn’t work either. It did have a rather unexpected side effect however, it made the bruises disappear. When I got the huge patch out, I cut it into three pieces and placed one piece over each of the nice sized purple and black spots popping up on my hind end and hip. Three hours later when I took them off the purple and blue spots were gone. So, while I derived no pain killing assistance from the Lidocaine patches, my bruising seemed too. Odd, never heard of that one before.
The shots in themselves where not really all that painful…BUT you have to take into account that I have a ridiculously high pain tolerance. The Lidocaine he sprayed on my skin just prior to the injections had no effect, really. No “deadening” effect, because I felt each and every needle puncture. That said, Dr Haman was correct in stating that he was very good at what he does. He was lightening fast and despite my severe anxiety it was over in a matter of a couple of minutes. I really do feel silly about it all. Letting something get to me so badly, but it seems to be a part of me, for what ever reason, so I just deal with it.
I go back next Monday for Round 2….. I’m really hoping and praying that the Valium will work. I hate weakness of any kind in myself, and I really see my intolerance of needles as a weakness. However, I have to do this. I need to find out if this will save my hip and save me from a permanent wheelchair assignment. More than anything, I do NOT want to be in a wheelchair for the rest of my life! If I cannot get the hip to stop it’s dislocation in both directions, than I will be. Prolo is worth a shot. I can’t say I’ve scene an improvement yet, but it’s only been a day. My understanding of the process is that I won’t see max benefit for another 6 weeks or so. SO, we shall see…..

Using Genetics- Reverse Genetics- and Genetic Engineering

2008-08-15T14:41:00.000-07:00

Have you heard of Microbiologist Terrence Tumpey? Tumpey and his team have managed to use reverse genetics to recreate the H1 N1 virus, otherwise known as the 1918 Flu or Spanish Flu. The 1918 flu outbreak killed 50 million people in a relatively short time period. When the reverse genetics where complete, to test it and make sure it was the right flu, they tested it on mice. The mice died with in three days. Tumpey and his team learned a valuable piece of information. The H1 N1 attacked the lungs differently than non-lethal strains of the flu. Non-lethal strains sit in the upper lobes of the lung, where as H1 N1 was able to cause severe inflammation in all areas of the lungs. This I can understand, to an extent. I understand the logic of recreating something so deadly to study it, poke and prod it, bend and break it. I can see the point, the usefulness. Studying one’s enemy is always a useful tactic. However, I disagree completely with the fact that they then published the complete genome data.
I went through the little survey blurb on the PBS NOVA Science Now site. I have to disagree with the way they did their survey. They linked two separate issues together and gave no option to approve one without the other. I DO approve the use of genetics to study a virus as deadly as this one. The best defense is a good offense, so to speak. You can’t have a plan of attack, or prevention, with out having some idea on the enemy. I do, however, strongly disagree with the publishing of the data. Giving anyone out there the information was just irresponsible. I agree that other scientists might think of something, or bring something new to the table, but the public at large should not have this information, and really, some scientists shouldn’t’ either. The fact that the site survey would not allow you to choose one with out the other, well, that’s something I’m not sure I want to understand. Why not separate the discovery from the dissemination of data? Companies and other scientist do it all the time.
Never mind the fact that terrorist could get a hold of it. I’m not one to ring the “terrorist” bell, but gee’s guys, come on. A little common sense here, please. By publishing the complete genome, you published a blueprint for recreating the virus anywhere. Yes, I understand that special equipment and scientists with specific knowledge would be needed. I don’t, however, estimate the sheer tenacity of human beings. I mean, seriously. We are the cockroaches at the top of the food chain when it comes to survival, and we are the ultimate predator when it comes to killing each other. Be it in ones or twos, with guns, or thousands in gas chambers. From Hitler to the genocide in Africa, there seem to be a certain percentage of the population that is not only willing but DO decide that others do not deserve/need or what ever their funky logic inserts there, and should die. Oddly enough, there is a much larger more dangerous percentage of the population that is willing to follow those that make the decision on who should die. Is that percentage that concerns me…. They are the ones that will find a way.
That’s all for today… I will write more on this subject and would love to hear others opinions!

Last night’s episode of ABC’s Medical Mysteries…..lingering questions

2008-08-13T07:39:00.000-07:00

Okay, I admit it! I watch these types of shows. They keep the information short, in easy to digest pieces intermingled with the processor down time known as commercials. Since TDH and I refuse to make the leap into satellite television, and cable isn’t available in our neighborhood - yes people, there ARE still places in America without the benefit of cable TV and high speed internet, we are rather limited on our viewing choices. Basically, our “basic” TV is the three major networks, a new FOX off shoot, you know the one, where you only get certain Fox shows but not a lot of the good ones, then there is PBS and a religion channel. So, our choice of viewing being rather limited, I am inclined to watch what ever is most interesting. Btw, in my opinion, interesting does NOT include reality TV….. yuck. I’ve got enough drama in my own life, I don’t need theirs, feel the same about soap operas too.
So, last night we are watching ABC’s Medical Mysteries. The “can you figure it out” section was very obvious to me, because I’m familiar with Chiari. TDH thought it was a brain tumor… In the end, it turned out to be Chiari. What bothered me so much about the whole thing was the way they gave such limited information about what it is, who is likely to have it, etc. They gave a short list of symptoms and then the diagnosis. Chiari is a very serious condition! The “small piece of scull” they removed from his head did make him feel better, but they didn’t even mention the risks he now faces by not having that bone there.
I worry that the average person might see these shows and start self diagnosing based on the limited information they received while watching. The goal of the show, I’m guessing because they don’t actually say, is to raise awareness. Which is good, I agree. However, not everyone will run to the internet to research what they’ve seen and take it as useful information. Is it really responsible programming to do this? Would it be a better idea to spend the whole hour devoted to one disease or disorder? Or would that information be overwhelming to the average lay person? I wonder how many doctors hate these shows because people show up in their offices convinced they have what ever it was they saw? On the other hand, someone who has been searching for years trying to figure out what is wrong with them, might go –that’s it!
But is the information they give truly accurate? Things like Chiari have different symptoms for different people. Some go most of their lives with no indication that anything is wrong at all until one day the world goes awry for them. A person could have Chiari and not have any of the symptoms the man on this episode had. So does that person benefit?
And what about health care providers? So many of them have no training in the areas of these rare diseases and disorders, if one walked into their office they wouldn’t be able to diagnose it. Just as the man in the episode discovered, his “home town” doctors couldn’t find anything wrong with him. Yet obviously he did have a very real condition! It took going to the Mayo Clinic to figure it out. So why is the Mayo Clinic the last word on these types of things? Why is that it their physicians are so much more educated than the doctors practicing in our home towns? I understand that there is a load of information out there, and doctors can’t “lean it all”, but isn’t that why we have specialists? If you are designated a “specialists” in a field, shouldn’t you make it your business to know everything you can in that field?
Just my thoughts on the matter……

EDS- traveling and pain

2008-08-12T07:43:00.000-07:00

Our youngest child is set to graduate from Navy Recruit Training soon, which means a trip up to the Navy's only Recruit Training Center in Chicago. By car, that is 8 hours 1 way. Sitting in a car for that length of time is very, uhm, uncomfortable. TDH (tall dark and handsome=my husband) and I spent hours online last Sat trying to figure out the best fit. Not only do we have to take into consideration my EDS issues, but we want to spend the maximum amount of time with our baby girl. The Navy gives the graduates 3 days of liberty (usually from 8am to 6pm each day). So, if we drove we would have to leave early afternoon on Sunday to make it back and recover enough for work on Monday, which means missing half a day with her. We looked at taking the train, which would be fun, but the train schedule would put us leaving on Sunday morning at 9. So that was out. Price wise, it was too expensive to rent a car locally. Since we don't live that close to a major airport the "best rates" were $40 and up per day. We could have driven to St. Louis, where we could get a daily rate of $10.95. But then, what is the point? The whole reason we were thinking about a rental was 1- better gas mileage 2- why put the wear and tear on our vehicle when we could put it on theirs? With a 16 hour round trip, that would for sure be an oil change, and regular wear and tear.
After searching many options, we ended up getting plane tickets and a rental car in Chicago. (Where the daily rate at O’Hare was 8.95!) That way we don't have to leave until 4 on Sunday, we'll be back here in plenty of time to drive home and have some recovery time before bed. So now I'm faced with the challenge of figuring out how to fly comfortably. Thankfully, it's a short flight, but airline seats are not the most comfortable and there is no room to move around. I do okay in the car as long as I have wiggle room, for about 3 hours, after that I have to do something. When we drove to FL last Jan to visit our middle daughter, I would move to the back seat while TDH drove, so I could lay with my legs and back stretched out. Since then, my right hip has started sublexing and dislocating regularly, to the point that walking is a chore. So, I have to consider that also, when tackling the airport! It's a 2.5 hour drive to the St. Louis Airport, then getting from the car to the building, then from the entrance to the terminal, then the actual flight, and from the terminal to the rental car desk, from that desk to the rental car.
Wow that seems rather stupid, but it's really necessary. For people who don't have EDS or something like it, they wouldn't give it a second thought. But for me, the whole thing is an event that has to be choreographed like a production number.... sheeesh. I have a wheel chair that’s just a manual one, nothing special, but I don’t want to attempt to log that thing around…. and the doc and mobility expert are still working on getting me approved for a scooter like device, but even if I had it I wouldn’t attempt taking it on a trip like this….. some how I don’t think that a scooter could be classified as a carry on bag!
Any of you EDSers out there have suggestions on how to choreograph this to work out so I’m not dying of pain by the time it’s over, let me know!

Opening comments

2008-08-12T07:22:00.000-07:00

This blog is here for me to express my opinions! Who knows what the issue may be on any given day, because my thought process runs through many different areas of interest. I have EDS- Ehlers-Danlos Syndrome- Diagnosed by the genetics dept of Mayo Clinic in MN. I'm also a member of the Painfoundation.(www.painfoundation.org) because I believe that anyone, not just EDSers, who live in constant pain deserve quality treatment from health care providers and the public at large. My intention is to use this space for EDS, Pain Management, and just my random thoughts. If you have something to say or add, please let me know~ Thanks- "the management"