PTA Pitfalls

The way my physical therapy is set up, I see my actual physical therapist once per week, and then on second weekly appointment I see one of the physical therapy assistants. I HATE seeing the assistants, I feel like the sessions are never as helpful as the sessions with my PT. This past Monday I had a session with a physical therapy assistant that I'd never worked with before. After asking me a million odd questions, and wasting a good amount of time, she finally got started. Normally my PT session progresses something like this.... Ultrasound therapy, taping, then exercising the muscles to help with stabilizing patella (right now I have a million knee problems going on at once,) finally ice. She started the ultrasound therapy, but not with the correct gel, and not in the correct area. Then she moved onto taping.... now, because I have patella alta with a lateral tilt it has to be taped a certain way. Not only did she fail to tape it the way it needs to be taped, but she failed to tape my knee at all, and instead taped my thigh... UHHHH???? Then she decided to add another step... stretching.
 Normally I'm a fan of stretching, but due to my hypermobility I generally don't let others stretch me (physical trainers at a gym, etc) because I don't really "feel the stretch" like normal people would, and its what everyone seems to be looking for when they stretch your limbs. I don't want to get pushed too far and then injured,  where as I know my own limits and what I'm comfortable with when it comes to stretching.
I figured that a PTA in the healthcare setting would probably know how far they could and should stretch a patient though, so I allowed it. BIGGEST. MISTAKE. EVER. First, I'm guessing in attempt to stretch my calf muscle, while my leg was straight on the table she was flexing my ankle with my toes towards my shin. Now, I have hypermobile ankles apparently, and I think that shocked her, because it was almost like for a second she forgot about her "stretches" but it was like she was trying to see how far she could get my ankles to go. I remember thinking that while I was there and she was doing that, and it should have been a warning sign to me, I should have stopped it right then and there and said ok, I don't feel like doing the stretching today, can we just more on to exercises. Unfortunately, I remained silent. She then moved on to do some other odd stretches with my leg, that I have never seen or done before in my life, and I have been in and out of PT (never knowing what the real problem was) for 15 years now, so I've seen a lot of stretching. My leg was at an awkward angle, and she asked me if I felt the hamstring stretching, and I replied no, and also, that I have never felt stretches in the same way that most people do though. She then went on to push my leg even further into the awkward position and asked again if I could feel it. This AGAIN should have been a warning to me, that she thought she could force the response out of my body that just isn't natural for it. I replied no again, but didn't want to make a big deal out of this, because the Physical Therapy Center was busy and there were other patients there and other PT's and PTA's trying to do their jobs. I didn't want to disrupt them at all. I'm also not one to want to rock the boat at all with a health care provider.
After I said no, she pushed my leg a little further, for a moment, in a last minute effort to elicit the response she wanted, or maybe once again just to see how far she could bend me. She then let go of me, and stopped with the ridiculousness that she called stretching.
Nothing hurt, and I thought, "good, I managed to get out of that unscathed, but boy oh boy did I learn my lesson for good. Never again."
Finally it was time to do my exercises. Some of the exercises that I do stay consistent and I do them every time, and some of them change and I may do them every other time or every third time or so, but I know how to do them all, because my actual PT has trained me in the correct way to do them. Well, this PTA insisted that I do them the way that the PTA wanted them done. So now I'm being forced to do incorrect exercises, on my bad knee, that was taped incorrectly, and has been over stretched.... recipe for disaster? I think so.
Finally it was time for ice, and by now my knee was HURTING and not only my normal pain, but I had a whole new pain in my knee as well. While I was icing, I told my PTA exactly that, and her remark back to me was well "if you don't think physical therapy is helping you, you can always go back to your ortho." REALLY?!?!?! Are you kidding me? I didn't say I didn't think physical therapy wasn't helping me, or couldn't helping me, all I said was that right then and there I was having a ton of pain and along with my normal pain I had NEW pain. She didn't seem to understand that I fully believed and I still do believe that she is the reason for the increase in my pain and the reason for the new pain as well. Maybe she's relatively new and doesn't have as much experience. I'd rather believe this, than believe that she's just a bad PTA who shouldn't be in the field.
I'm obviously going to have to say something to my PT when I see her tomorrow, but I dont want to make it seem like I'm talking bad about one of her co-workers, and again, I'm really bad about speaking up and rocking the boat when it comes to a health care provider (oddly enough not with anything else though.)
What it all really boils down to though is that I'm really frustrated. I've been to enough Physical Therapy through out my life to know that a lot of people who go to physical therapy don't really want to do the work to fix whatever is wrong. They want a quick fix, and they're not happy that PT forces them to be active. Especially the older folks there. I'm incredibly frustrated because this is not the case with me. I'm young. I like active. I really think that with time PT can help. I feel like whatever little progress I might have made has been wiped away, and now I have a new injury on top of it. I was, and still am willing to do whatever it will take to get better, to make my knee better and to help better manage the pain in all of my joints. Once I finished up with PT and my knee is in better shape I'm planning to get started with training for a race for my own personal reasons. It was a commitment that I made to someone a long time ago, and I have to keep it, and I'm just feeling down in the dumps with this set back.

EDS & Our Ancestors

I've been meaning to sit down and write. Every single day I tell myself that I'm going to get my thoughts out, that I'll get back to blogging about them, because the venting will do me good. The truth is, that between PT, being a mother to a 5 year old, and trying to take care of projects around the house (that I have just had sitting in my basement storage room waiting to be taken care of,) I have just felt too drained at the end of each day to put any mental energy into writing. That, and, I'm a research nut, so finding out all of this new stuff out about my various conditions, I have just been going on a research rampage. My goal has been to try and gather as much information as possible to try and figure out how to give myself the best life possible until I can actually make it in to see the specialist.
I came across an interesting read that really got me thinking, and I wanted to share it on here. Its a theory about how EDS might have been a genetic advantage back in the ancestral days. It is a bit repetitive, but it does make some good points and if you sit and think for a little while, it kinds makes you wonder what other genetic "disorders" could really be genetic advantages in the right environment, instead of genetic disadvantages.
Evolution, is a slow process, that happens gradually, over time. Our bodies change and adapt to meet the needs of our species, but that process cannot possibly keep up with the fast paced tech world that we live in now. We are built for hunting and gathering, not microwaving and channel surfing.
Anyway, I'm rambling. The link is here, and the theory can probably be applied to a lot more than just EDS....
A Theory of Ehlers-Danlos as a Genetic Advantage in Ancestral Environments Contributing to Advanced Civilization

PT Eval... Surprise 2nd Genetic Condition

I had my PT eval today! It went really well, I actually really like my physical therapist, she seems pretty knowledgable about everything thats going on with me, especially my knees! She even noticed a few things that I never even picked up on, that would have ended up causing me problems in the future. Thats the good news. The bad news is that I actually have three problems with my left knee going on all at the same time. It turns out that in both of my knees I have a second rare genetic condition called patella alta. What that basically means is that my knee cap sits higher up than it should, and doesnt follow along its normal track. This happens to make my patella extra prone to dislocations and subluxations (on top of the inherent risk for dislocations and subluxations that goes right along with EDS.) To add to that, because of the EDS, and my hypermobility in my knees, the grooves in my femur and tibia joint dont line up correctly to allow my patella to fit nicely into the track even if it wanted to. I have most of the pain in my knees when they are bent and the pain increases exponentially the longer I keep them bent, because my knee caps are not sitting pretty where they should be/would be on a normal person.... instead, they are resting on the edge of my femur, making awesome, tense, bone on bone contact that it freakishly painful. I have a REALLY high pain tolerance when it comes to this stuff, so trust me on this when I tell you, sometimes lately even this knee pain especially has me on the verge of tears.
Another problem with my knee is a pretty inflamed/angry tendon.... from what? No clue. Not even the slightest.
Also, apparently, I've been dealing with the knee pain for so long that as a compensatory measure I have developed what my PT said is called a heel whip. Normally we walk heel to toe, but with the pain in my left leg being so bad for so long I walk slightly different with my left foot. I can't even begin to explain it, and I'm not even sure I understand it completely myself.
Apparently my ankles are REALLY hypermobile, which I never know. How does one even test for hypermobility in an ankle? I've always known about my other joints, but know I'm curious about my ankles.
My right shoulder popped for the first time today, after leaving PT and I had a heck of a time wiggling it back into a comfortable position while trying to be somewhat covert about it (I wasnt at home.)
Also, those family matters that we supposed to be getting better, are only getting worse, and although I consider myself a very very loyal person, I cant keep going with the way things are, so the sake of my own health, and my own family. Tomorrow (I guess today, really) is going to be a long day of trying to decide what the right course of action is, because I'm really in between a rock and a hard place in this situation, and I have no clue what to do.

Over Time

All of my medical quality protein supplements arrived in the mail, and while I wont venture out on to a limb and say that I like them (because I abhor the taste of all protein drinks,) there is a pretty decent chicken soup flavored one. The other flavors aren't event as bad as most of the other ones sold in the stores either, so thats awesome.
Ever since increasing my protein intake so drastically though, I have been feeling a bit "off." Maybe its just my body finally adjusting to it getting the nutrients that it needs? I just cant but wonder when I'll have to go through this ordeal again. I'm sure this won't be the last time. I've given thought to continuing to maintain maybe 150-200g of protein on a daily basis after I get through this rough patch, but then I wonder, what if my body gets used to that, and then fails to absorb all protein again? How much will I have to up my intake to then? Will it finally get to be too much? Will I have to be given IV Albumin in the hospital? I certainly don't want that. Ugh. Its certainly stuff to think over and talk to the doctors about.
I also got a chance to mend the bridge a little bit with my family today. My grandfather reached out to me. He has always been more of the diplomatic one out of the two, and apparently, he had no idea how my grandmother was acting towards me while he wasn't around. We took the opportunity and visited with them for a brief while this morning. It might just be better to keep a little distance for now and see what time will do for the situation.

Add Severe Protein Malnourishment To The List....

I'm not sure if this is something that is connected to the EDS, or if this is a completely separate health problem, but apparently, every once in a while my body has problems with absorbing certain vitamins, and nutrients. This time around it seems to be protein. I'm finding myself in a position (and not for the first time, or for lack of eating) severely malnourished when it comes to protein. My doctor wants me to eat a high protein diet for the time being, so that I can hopefully pull my body back out from the deficiency. He's told me he wants me to work up to eating 400 grams of protein over the next week (adding a little more each day to give my body time to adjust.) I'm supposed to stay at 400g for 3-4 weeks, and then we will reevaluate the situation.
I know that gastrointestinal issues go hand in hand with EDS, but I just cant be sure that there is a link here, and this whole situation is pretty frustrating. Since there is no way in the world I would physically be able to eat 400 grams worth of protein without stuffing myself to the point of... well.... it wouldn't be pretty, I'm on mostly a liquid protein supplement diet which is just no fun at all.
I cant afford to be protein deficient ever, because of the EDS, my muscles are all I really have to rely on to hold my body together, and right now I need to be working on strengthening them, not making them weaker from lack of protein.
I've gotten some great tips on how to make these horrible protein shakes taste significantly better, but if anyone is interested in messaging me and giving me more, I would be happy to hear from you!!

PT skeptic

There really hasn't been much new to report over here on my end. 

I start physical therapy on Monday, and honestly, I'm a bit of a skeptic about how it could possibly help me....

See, I've had physical therapy before, on the same knee (we're concentrating mainly in the knee that may or may not need to be operated on this go around), and PT didn't help at all. It was just like a pretty expensive, overly supervised visit to a self glorified gym. Maybe I just went to the wrong place last time and this time will be better? Glass half full? At least the other place was in network and I was a teenager and didn't have to worry about settling up whatever insurance did or did not pay.

What I guess I'm saying is I think I know where this is all eventually going to end up with my knee anyways, so I just feel like there is no sense in delaying the inevitable. Cut me open, fix me up, sew me shut. End of story... for the next decade or so until the joint goes bad again.

If the purpose of the PT is to strengthen the muscle around the joint, then wouldn't it just be more beneficial to fix the joint first, then do the PT after to strengthen it?

Family Feud

Where do you go, when you cant even turn to family for support? Aside from just waging my daily battle with EDS, I've also been put in the unfortunate position of having to wage one with my grandparents as well (the only family I have remaining, excluding my husband, daughter, and in-laws.)
My mother passed away from complications of Multiple Sclerosis, which also starts out as an invisible illness until it eventually progresses and becomes bad enough that one cannot help but be bombarded with the outward symptoms. They accepted her illness, stood by her, and did everything they could to help her (in their own way of course.) That also included raising me, and caring for me when my mother had to move into a handicapped accessible facility when I was 13.
When I was diagnosed with EDS I tried to explain to my grandmother what it was, and it seemed that she was not interested in hearing about it. I showed her some of the things they tested me for and explained how everything in my medical history lined up with the diagnosis. She didn't have much to say about it, and I thought that the reason she was acting so non-chalantly about it was because I didnt make a big deal about it.
As I started to see more and more doctors, and specialists, I was given different medications to take. One medication in particular was originally manufactured for seizures, but has proven successful in managing pain, so the doctor thought this would be helpful in my case. It would be a win/win situation, I could take a medication to help manage my pain without having to take a narcotic. The draw back of this medication was that it came with some bad, but TEMPORARY side effects. I was still all for it. Some of the side effects included:
-Possible short term memory problems
-Possible speech difficulty (so sometimes it feels like I'm talking with a mouth full of mush and my words are not as sharp and clear as they normally are)
-Possible loss of appetite (so true, not hungry at all, EVER)

I told my grandmother about the new medications, but did not go into great detail about anything, because I have always been a fairly private person about my health (that has all been blown out of the water now.) She still acted like it was no big deal. So I did as well. Life as normal.

On one particular occasion about a month or so ago while I was visiting, I saw a coupon for Aleve and mentioned that I needed to pick some more up from the store. She then said "you're going to get hooked on that stuff you know." I kind of laughed it off, and thought she was joking, because everybody knows that Aleve is not a controlled substance.
Then, three weeks ago, my husband, my daughter and myself were over at their house visiting, and I was having a particularly bad day; both with the EDS, and with the side effects of the medication that I mentioned above. Apparently I forgot to buy a carton of cigarettes for her, I had gotten literally 2 hours of sleep the prior night, and I was in pain, so needless to say I was not looking at my best. I made a comment to my husband not to forget to pick up my prescription refill on the way home (that she must have overheard.) She then decided to come out and say "Now, I dont know whats going on with all of these pills you're hooked on." She was completely serious. I looked back at her, and in that second it hit me.... She didnt get it. She just didnt get any of it. The severity of the situation. The EDS. Why I was taking medication to begin with. She just didnt get it. I look healthy, so therefore I must be healthy. All this time, all of these weeks, after all of these doctors appointments, everytime I tried to explain it to her, she just wasnt listening, because she had it set it her mind that there was/is nothing wrong with me.
I couldnt help but to walk out of the room, out of the house even, crying. I left my husband behind to make an attempt an explaining the situation yet again, because I knew at that moment I was too hurt/angry/upset to even be able to try. Maybe I was being a baby.
After we left their house, my husband said he explained it to her well, and she seemed to have a better grasp on the situation and everything that was going on. I was still hurt by earlier's exchange, but relieved that things were settled now.
Its important to note that neither my husband nor myself has really during this time ever sat down with my grandfather and explained the situation to him. My grandfather much prefers to talk politics, the stock market, business, and other current events (I cant say as that I blame him, and I often engage him in such conversation.) So any, and all (if any) information he may have been getting on the subject of my health, EDS, or medication would have come from my grandmother.
Allow me to fast forward a week or two. My grandfather has been promising to take my daughter to Chuck E Cheese for her birthday (a few days after her birthday) and the time had finally come! So all five of us (myself, my daughter, my husband,my grandmother, and my grandfather,) head out to the oh so awesome place where "a kid can be a kid." My grandfather (who ADORES my daughter) buys her more tokens than she has any idea what to do with, and I escort her through the maze of games and rides.
Meanwhile, back at the table, little to my knowledge, my grandparents pulled my husband aside for an ever so covert meeting regarding..... thats right... yours truly. My grandmother did most of the talking from what I understand, and she told my husband that she was concerned because in her opinion I'm always "doped up." My grandfather said, he never noticed it, but that my grandmother insisted that that was the case, and that I must be on something. I'm not going to sit here and type it all out, but it was pretty upsetting hearing some of the things that she had to say about me, and I suspect that she never even mentioned the EDS to my grandfather at all. Apparently none of the conversation that my husband had with her a few weeks ago stuck with her. Its frustrating and hurtful all at the same time.... why cant they get it.... I'm not doped up, I'm not on anything bad, I'M SICK. They also asked my husband not to tell me that they had that conversation at Chuck E Cheese, which made both of us angry.
My response to the whole thing was to write a 4 page letter directly to my grandfather himself, since my grandmother doesnt seem to get it. In the letter I explained EVERYTHING, I even included the names of some of my medications that have been causing some of the side effects so that if he was so inclined he could verify it for himself with a pharmacist of his choosing ....Transparency has not, is not, nor will it ever be a problem for me, because I have nothing to hide, but that doesnt also mean that I dont have a right to privacy, and in a certain way I feel like that right was violated to clear my name. I hand delivered that letter to him, but other than that we wont be going back over there until I hear a response from one of them. I have enough on my plate to worry about, being judged by family shouldnt have to be one of them.