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.
Thursday, August 28, 2008
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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