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
Friday, September 19, 2008
Wednesday, September 10, 2008
Prolotherapy on the Knees and surgery
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
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
Tuesday, September 2, 2008
Prolotherapy III
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!
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!
Monday, September 1, 2008
Tomorrow is Prolotherapy III and new medication
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!
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!
Thursday, August 28, 2008
Prolotherapy Treatment II
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.
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.
Tuesday, August 19, 2008
Prolotherapy treatment No. 1
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…..
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…..
Friday, August 15, 2008
Using Genetics- Reverse Genetics- and Genetic Engineering
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!
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
That’s all for today… I will write more on this subject and would love to hear others opinions!
Wednesday, August 13, 2008
Last night’s episode of ABC’s Medical Mysteries…..lingering questions
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……
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……
Tuesday, August 12, 2008
EDS- traveling and pain
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!
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
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"
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