Ehlers-Danlos Syndrome

As I’ve mentioned quite a few times, I have hypermobile joints. This is due to faulty production of or structure flaws in collagen. It’s something I inherited. It’s something that can’t be cured. It’s something that impacts my daily life. It’s also something that isn’t always well understood by medical professionals. Case in point, the family practice clinic of UAB understands little about the condition in general. As it relates to me, they understand next to nothing.  The Wellness Center sent a medical release to UAB for my doctor to fill out. I’ve been working with my doctor to figure out how the condition impacts my health & daily life. Was it my doctor who filled out the medical release? No. And did I get the medical release? No.  I did get a call from the clinic telling me that the release was denied because I have a “skin condition” that causes my skin to “tear so easily”—an aspect of the disease that isn’t that bad for me.1 It’s an aspect that isn’t really in my chart at their practice, so I figured that they googled it and went with what Google says it is known for; ignoring that the most common form mainly involves joint hypermobility. I told the person who called that I was joining to continue to practice my physical therapy exercises. I’m essentially going to treat the disease and to attempt to prevent future surgeries.  I know the types of exercise that are safe for people with Ehlers-Danlos: low resistance, high repetition. Recumbent stationary bicycles, regular stationary bicycles, pool exercises, Pilates.  More importantly, I know my own limits. I have to. My safety, my life depends on my ability to recognize what my body can go through safely.  But a doctor who I have never met, who has no familiarity with my condition or my history has decided that I can’t do something that I need to do. Oh, but I can get a new release form from the Wellness Center & I can schedule an appointment with my doctor to get the release approved. Of course I have to call back at a later time to do that because they couldn’t transfer me to scheduling. In the meantime, I get to pay for something I can’t even use.  Fun.  Oddly, yesterday I was happy that someone unfamiliar with my chart was making calls on my care.  Yesterday, I tried to schedule an appointment for another 3 month prescription for my birth control pills. Because of my increased risk of clots, they require high risk medication appointments for the prescription. They decided to call it in instead of see me.  I thought the idea of appointments every three months was silly to start with, so I assumed that they’d changed their minds on it. Now, I’m guessing that someone didn’t review my chart properly.  I guess a high risk of blood clots is safe to ignore, but if I might tear my skin or, more likely, tendons & ligaments, then must be stopped. Something that could literally kill me is safe, but something that could happen if I just walk across the room is too risky. Welcome to Bizarro World.  My skin does tear more easily than it does for people without the condition, but my level of skin involvement is mild compared to many who have Ehlers-Danlos. ↩

Do You Even Medicine Bro?

In just a few hours, I get to find out if my months of physical therapy are actually coming to an end. They should be, but the way that Brant talked on Tuesday makes me think it might not be.  If it is: I am planning on going to the Wellness Center to sign up to continue my rehabilitation on my own.1 If it isn’t: No trip to the Wellness Center will take place. I will come home as usual and continue my appointments. I will try not to be too cocky about the possibility that it may happen, but I will also try not to be disappointed if it doesn’t.2 I mentioned the possibility of changing family practice physicians the other night. It looks like that won’t be happening. The billing folks at UAB have written off the appointments. Apparently, they were all assigned to an attending who only briefly worked there. He never became certified with our insurance company. They seemed to be as frustrated with anything related to him3 as we were. So, yay, no new doctors!4 Anyway, I guess that’s all for now—except that I should point out how fucking awful Nazis/Neo-Nazis are. If you follow me on Twitter, you’ve probably seen my “conversation” with a self-proclaimed Nazi5 lately. They aren’t just bigots, they are assholes. No, wait. Assholes have the potential for good feelings. Nazis are the feeling lactose intolerant individuals get when they’ve just consumed massive amounts of ice cream, cheese, milk, etc.6 They. Are. Awful. And this guy is no different. They’re also incredibly boring, as there is only so much they can actually manage to say.7 And they piss. me. off.8 And I keep wanting to walk away from the arguments, but that ignoramus says something even more grotesque and my brain just goes into “must tell him he’s a racist jerk” mode. I should just walk away and maybe I will this time or the next. Just curious, but how would you interpret this picture?910       Oh well. I better go twiddle my thumbs11 for a while until it’s time for therapy.  My insurance plan covers a membership at the Center. ↩I am fairly certain that it will happen. ↩Re: He caused more problems than he solved. ↩I think I hear Handel’s “Messiah” playing in the distance. ↩This is where he’d go “@janersm *National Socialist.” But fuck it, he’s a fucking Nazi. If he doesn’t like being called such, he can stop being a fucking Nazi. ↩If you aren’t lactose intolerant, imagine the worst attack of nausea, fatigue, wooziness/dizziness, headaches, gas and either constipation or diarrhea you’ve ever had. Now multiply all of that by about 100. Voilà! ↩Blah, blah, blah. Jewish conspiracy. Blah, blah, blah. Lies. Blah, blah, blah. White is right. Blah, blah, blah. Holocaust? What Holocaust? Blah, blah, blah. I’m a pathetically ignorant shitbag, but I’ll never admit that. Blah, blah, fucking blah. ↩Considering how much time I’ve spent trying to learn about why & how the Holocaust and other bigotry has happened, this should come as no surprise. ↩@Bobasnotdead is the Nazi you’ve been looking for. ↩^ See what I did there. ↩Sleep. ↩

Hours Feel Like Days

Where’s Buffy the Vampire Yeti Slayer when you need her?  Actually, I love snow…in theory. In reality, snow is cold and I’m Southern. I like snow, but I haven’t really forgiven snow for the near-frostbite of 1993.  My friend and classmate Lindsay invited me to her house that Sunday. On the way to her house I fell and hit my butt on the ice-covered sidewalk.  I continued to her house, which is ten houses from me. I got there & we played in the yard. Her backyard neighbor invited us to play with her. Instead of going across the sidewalk, we walked across the ice-covered ditch. The ice was thin, I was not. My foot went through the ice and the water entered my sneakers & multiple pairs of socks. We continued to play. I started having trouble walking and my feet hurt. Then they didn’t hurt, but walking got harder. I finally convinced Lindsay something was wrong. Her mom had me sit in their garage for a little while to warm myself. Then she drove me home from their house—the only time that ever happened in our friendship. She told me to take a lukewarm shower, NOT a hot one,1 and take some Tylenol.  Also, I’m a little annoyed over the week in 1996 we got iced in at Nana’s when Granddaddy died.23 Nana, Mom, Dad, Aunt Barbara, Uncle Danny, Eric, and I were “stuck together” in the same house for a week, with enough clothes and medicine for two days. Mom & Dad had to come back to Huntsville, at one point, to feed Blizzard,4 Snowflake,5 & Tom,67 who were at home by themselves, and to get some clothes, medicine, etc.8 It was an odd week, but we had plenty of food9 and were able to get along pretty well.10  Maybe I’m annoyed with ice, not snow. It’s all cold and wet, though. They go together, so…I’ll blame it on the snow. But snow does go well with my gingerness.11   And snow itself is very pretty, which I like. It also seems to make the neighborhood quieter, which I also like.  Anyway, it’s cold and I’m conflicted on how on how I feel about the coldness.  Oh, a progress note on my knee, I tried on a pair of my “high”12 heeled  shoes. That sounds like an odd and random thing to mention, right? It was my first time wearing heels at all since before the surgery. I walked in them for a few minutes. I nearly fell a few times, too.13  But I didn’t actually fall.  Go me.  Mom and I argued a bit about the height of the shoes. They were three inches tall, which is like 7 or 8 inches to her.  I was a little flabbergasted at her “they’re just so high” angst. They’re only slightly higher than I am supposed to wear.14 But she’s my mom and she is supposed to freak out over that sort of thing. Even if I am almost 32.15 Anyway, my knee did fine with the shoes, so that was good. That’s so important to know, FYI, because you can burn yourself easily if you have frostbite. ↩He had died at the hospital the day before. He was not dead in the house with us. ↩We were all at her house because his visitation was February 1st and his funeral was scheduled for the 2nd. It ended up being the 7th, which was the day after what could have been his 77th birthday. ↩Black female cat. ↩Black female cat. ↩Siamese female cat named by a two year old. ↩If you are wanting to mock said two year old, remember how adorable that toddler could be. Basically:   ↩Etc. being code for pads because that was also the week my second period ever decided to start. ↩People had brought a lot of food over because people do that when someone dies. ↩This was before I broke my family apart with my blog. ↩I like how I look when I’m out in snow better than I do in most other weather. ↩3 inches are not that high, comparatively speaking. ↩It’s amazing how quickly one can lose the ability to walk in heels. ↩Two inches is max when you have joint issues. It’s supposed to be the max for everyone. ↩Less than a month. ↩

Welcome to Snowpocalypse 2016

Since my last post, I’ve had good days and bad ones.  The day after Christmas turned into a bad one because I decided my leg was doing better than it really was. Instead of walking two houses & turning around, I walked to the end of the block and back. It’s really not a long walk—eight houses instead of two, but it was too much too soon. It didn’t help that it involved walking downhill then back uphill, which increases the strain on the body. Anyway, that led to swelling, more pain medicine, and some anxiety about exercise. It’s not that I don’t want to exercise because I do. I’m just not trusting my mind to understand my body has limits.  I’ve had other bad days, which typically result from me doing too much. I am doing better about the limits, but it’s involved others (family, physical therapists) having to translate my cringes and having to ask me if I’m actually in pain or just experiencing normal muscle tiredness. Even then I have to keep myself from continuing through the pain. There’s a word for all of that: stubbornness.1 But I’ve had my good days, too. And I am trying to focus on those on the bad days. Hope is an excellent thing to have when you’re healing.  Speaking of good days and healing, I’ve got two more weeks of physical therapy. The physical therapists have moved me to weight machines, which have caused some pain in other areas, but I’ve progressed rather quickly with them. And I promise I’m telling the physical therapist if it’s too much.  I forgot to mention how my hematologist appointment went last month. I’m not too iron deficient yet. The hematologist actually said the iron level itself had increased somewhat, which freaked everyone out, until I brought up that I had done a year of Depo Provera before switching to Norethindrone.2 The hematologist said that the birth control may have given me yet another year or two between iron infusions. But he said it is very likely that I will need one next year. He’s going to base the infusion decision on my ferritin level.3 The level has continued to drop at a steady rate since my last infusion4 and he will do the next one when it reaches a low enough level.  ((The development of iron deficiency anemia is a gradual process. If your body is not taking in enough iron, your body first uses the iron that is stored in tissues (i.e., ferritin) and blood levels of ferritin will begin to decrease. If not corrected, the stored iron begins to be depleted as it is used in the production of red blood cells. In the early stages of iron-deficiency, blood levels of iron can be normal while stored iron, and therefore ferritin levels, will begin to decrease.)) But we were all happy about the delays, since, as I’ve said before, iron infusions are very risky. Anyway, things have been pretty good for me lately. And I am definitely stubborn. ↩The “Mini Pill” or progesterone-only pill, since I can only take progesterone-only forms of hormonal birth control thanks to my family’s—and my—risk of clots. ↩Ferritin is a ubiquitous intracellular protein that stores iron and releases it in a controlled fashion. The protein is produced by almost all living organisms, including algae, bacteria, higher plants, and animals. In humans, it acts as a buffer against iron deficiency and iron overload. ↩November 2013 ↩

There’s Always Tomorrow 

Well, I’ve got some good news. My knee is feeling so much better. Not like a little better. No, my knee is almost, dare I say it, pain free most of the time now. Sure, it aches, but the sharp, nausea-inducing, so-bad-it-causes-thoughts-of-suicide pain is pretty much gone.  [Insert the “Hallelujah Chorus” from Handel’s Messiah here.] My need for pain medication has gone to a sporadic thing, even after physical therapy. That’s not the biggest and best thing, though. My Flexeril usage has gone from 40 mg at night to 20 mg. Apparently, a lot of my pain and overall inability to sleep was caused by my knee hurting.  I’m not going to pretend like my knee is never going to hurt really bad again because I know that’s unlikely. And I’m not going to start to do things that will hurt it. But…my hope for a life that revolves less around the pain doesn’t seem like a pipe dream anymore.  I think I may start adding small walks into my daily routine in the next few days. Don’t worry. That’s actually considered safe at this point in my healing from the surgery & is even recommended. And I won’t go too far. I’ll start at a tenth of a mile & work my way back to doing a mile at a time. If I start getting worse, then I know to call my doctors or the physical therapists about it.  I am so thankful that things are looking up right now.                   

A Christmas Miracle 

Today, after dealing with the mess that was left in my mentions thanks to you know who,1 I had to go to my first physical therapy session. Well, not exactly my first. It’s the first one since this round started.2 And I had a new physical therapist…again. Including the PT and PTA that regularly work in the pool, I’ve had six physical therapists since the summer of 2014. For the most part, we just did things that I’ve already done. And, yeah, that stuff hurt like it usually does. It was also difficult like it usually is. But the new physical therapist introduced a couple of new things. Those things–one in particular–were a little too much for me. The first thing she added to my routine was a squat with my back against the wall. She wanted me to have my knees right over my toes and to squeeze a ball between my knees while I was doing this. Just getting into that position was too much for me. My knee started to go. I had to grab the corner of the wall & push myself up quickly to remain standing. We tried that move in a few different ways before finding one that didn’t completely do me in, but the instability and the pain just seemed to get worse after that. After the squat, she had me do weightlifting/resistance training, which is pretty much contraindicated for hypermobility patients. And she had me doing steps, which always causes problems. I think that on Friday I’ll be sure to tell her if certain activities are too much for my joints. I realized once I got home that some of the issues I was having by the end of the session were from my not speaking up. The therapist realized the squat issue because I spoke up, but I didn’t tell her about the hypermobility problem.3 But, if my knee starts to go out again during the physical therapy, I may need to give in and go back to the orthopedist. The physical therapist that did my evaluation did tell me that if it started to lock up or collapse on me that I needed to schedule an ortho appointment ASAP and basically demand surgery for it. She would probably say to go ahead and do it after today’s appointment, but I’m afraid that that might be rushing it.4 Anyway, I’m about to go eat some dinner and ice my knee. I can’t take any more pain medicine unless I want to be up when the sun starts to rise tomorrow morning. He’s also at least partly responsible for doubling my typical visitor count. ↩The appointment that I went to the other day was also physical therapy, but it wasn’t exactly a regular PT session. It was measurements and evaluations. ↩I assumed it was in my chart, but she kept commenting on my flexibility, so it’s possible that it wasn’t. I told the evaluating physical therapist that I was hypermobile. The other physical therapists who have worked with me also knew that I was hypermobile, so believing she knew should have been a safe assumption. ↩Oh, look. I’m trivializing a legit health issue. ↩

Another Day, Another PT

I intended to do two sets of my physical therapy “homework” today, but I got a little distracted with a certain talk radio host’s angst.1 But…I don’t know if I was 100% up for two goes of it today. I almost crashed after the first time through today & I’m still exhausted from it. I definitely don’t think I could have done two today, then gone in for physical therapy tomorrow. When I took the recycling out this morning, I realized that some of the things I feel in my knee are intensified versions of things I felt as a kid/teen. That helped me realize that the ways that I interpreted the pain back then could have been spot on. For example, I felt a tearing/crunching sensation that I always interpreted as cartilage tearing. Considering that that’s what is going on when I feel that now, maybe I wasn’t too far off.2 Or it could have been something else, but it’s more empowering to think of it the other way, especially when I remember that one of my doctors back then used to tell me that everybody hurts.34 My tendency to downplay my symptoms comes, in part, from things he used to say to me. Anyway, I think my mom is 100% convinced that I’m going to have knee surgery soon.5 She interprets everything I mention as another sign I need to ask him to operate. I don’t want to request that. Ever.  Yeah, I’m going to blame him for the distraction. ↩Trust your gut when it comes to your body. ↩Must. Not. Break. Into. REM. Song. ↩Way to be dismissive, right? ↩Keep your fingers crossed that she’s wrong on this. ↩

Blue is the Balls-iest Colour

I moved the non-NSAID medicine for pain to early afternoon. If I fall asleep before 4 or 5 in the morning, then that may have to be my one dose of medicine for the day. At least if I can take it once during the day, it will give me a little break, a little relief.  The orthopedist1 did call to say that it was okay to discontinue the Pennsaid. I wasn’t exactly asking permission when I let him know about my going off of it. I wasn’t going to start taking it again if he protested. I have to do what’s right for my health and that medicine definitely wasn’t. But it is nice that he’s cool with it.  I’m still annoyed that he kept the diagnosis from me, but it hasn’t exactly been long enough to get over it.   or someone on his behalf ↩

Night Moves

I found out what the orthopedist meant by “unspecified knee damage”/”unspecified knee pain” today. The physical therapist asked if I’d seen the doctor. I told her I had, then she asked if I saw an orthopedist. Again I told her that I had. She asked what he’d done. I told her he’d sent me for an MRI, then told me to get physical therapy. She asked what the diagnosis was and I told her the vague/”unspecified” diagnosis. She checked the referral to see if it was any clearer. It wasn’t.  She checked my latest physical therapy folder. It said I had tested positive for a meniscus tear. Then she asked where I had gone for my MRI. When I pointed down the hall, she realized that she could look that up easily as well. The indications, according to the radiologist, were quite specific.  I have a partial meniscus tear.  The fat pad at my patella is swollen. I have iliotibial band syndrome.  There’s a significant loss of cartilage behind my kneecap.  There was also a type of impingement, which could be the fat pad thing or it could be something else.  She said from how the report described my knee and how I described it (and my medicine issue) that it just sounded like my knee was a mess. She also said I may need surgery to clean out the debris in my knee. With everything that’s going on with it, it may be having trouble healing and strengthening because injured parts of the joint are simply in the way. She’s still going to help me strengthen it, but she said that she can’t guarantee that will fix it & I should (carefully) really consider the surgical option.  It was nice to figure out what is actually going on. I just don’t understand why the doctor wouldn’t tell me. I’ve been going around feeling confused about why I’m in so much pain. Now I know. Now I can better understand what I need to do to get better. He could have at least cued me in, right?

“Unspecified” Knee Pain 

I had therapy today–the psychological kind, not the physical kind.1 And it went pretty well–not that it normally doesn’t. Debbie told me that today I was the calmest she’d ever seen me. If you aren’t familiar with my relationship with my therapist, I should explain that prior to being randomly assigned as my therapist at the Mental Health Center, Debbie was one of the social workers on my foster sister’s case. She came by our house for home visits weekly back when I was 15-16. She has literally known me half my life. So this statement was a big deal.  Aside from suggesting that I do more socially, she was really thrilled that I took the first step toward getting my license again: getting a pair of glasses.2 I thought it was a minor step, but she said it was actually a big deal.3 I left a message for the orthopedist that the medicine was causing some issues for me. I also told him about an issue that started today. Now, when I press where the pain is most severe, a sharp, burning pain shoots down my calf into my ankle. I know that’s a nerve pain situation. I also know it’s important for him to know of new symptoms. So, I told him.4 I guess that means I’m making some progress. Go, me! I’ll have physical therapy tomorrow. ↩I used to have a vision restriction. ↩I tend to play down aspects of my life. ↩Telling doctors when an issue starts is also something that I usually don’t do. ↩

The Calmest I’ve Ever Seen