Pain


I’m taking the day off from exercising today and I refuse to feel bad about it. I have exercised every single day this past week. My last day off was last Thursday, March 3rd. I actually should have taken one sooner. Had I taken one off, my heel probably wouldn’t have started popping last night. Several of my pool exercises involve going onto the ball of my foot. I must have strained a certain tendon.1 Anyway, I am taking the day off to keep from inflaming it more or, worse, actually rupturing it. I’m trying to be responsible after being a bit callous with my body’s limitations.  Speaking of limitations, the cardiologist has sent a letter to the UAB doctors to have my tachycardia-related exercise limitation removed. The echo was normal. I just have a heart that beats more quickly than the average heart. Because of my absolutely normal blood pressure the tachycardia can’t be treated with medicine, so the main solution for it: exercise.  Except today, obviously.  Photo via Visualhunt Yep, the one from mythology. ↩

Earned It


I had therapy yesterday. No worries. It was just my monthly visit. Things were kinda wonky there. The computer system went down for one receptionist before it went down for EVERYONE. There were therapists complaining their computers were frozen and secretaries complaining that they couldn’t schedule anyone. Patients were also complaining because there was no way to check everyone in. Debbie ran a little late calling me back, but that had nothing to do with the computer situation. She ALWAYS runs late. I think it’s a Social Worker thing. I was a little more anxious than usual. I still get nervous seeing Debbie, even after knowing her since my freshman year of high school. She’s been my therapist for almost a decade, which is the longest I’ve ever seen a therapist & I worry sometimes that one day she will leave or something. I used to expect therapists to drop me all the time. I actually worry about that sort of thing with anyone—doctors, therapists, friends, family. I feel like I always have to be prepared because people leave me so easily. It makes it a wee bit harder for me to trust people. I guess everyone has their baggage. I went to the pool a few hours ago. I did some walking & other exercises for about thirty minutes. When I got out, I was a little sick/overheated. Standing out in the rain helped some. Then, like a lot of people in Alabama, I voted. Unlike most, I voted Democrat.1 My leg still hurts from exercising on Sunday. It’s gotten a little better since I got out of the pool this afternoon. I think it is just an overuse sort of thing, since it is just achy pain and not injury pain. The muscle just feels tired. Oh, and I’m still smiley about other things from Sunday.2 But I just want to say that even with the injury and even if Leo hadn’t won his first Oscar, Sunday was a good enough day that my mood is still like really good. Happiness for multiple days at a time is weird for me, so I’m celebrating that.  I may go work on organizing clothes & books in my room some. I’m not even dreading it if I do because, like I said, I’m in a good mood.  To paraphrase Sheldon Cooper paraphrasing Spock: Live long and suck it, GOP. ↩I am being deliberately vague here. ↩

Busy Ginger Is Busy




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?



On Monday afternoon, Nana called. She was in pain & couldn’t get to the bathroom or the kitchen by herself. She’d talked to the other relative.1 That relative gave her the equivalent of a verbal shrug.2 So Nana called mom.  My mom dropped everything & went to spend that night, last night, and tonight with Nana.3 And mom took Nana to the doctor. They’ve done tests to find out if Nana has rhabdomyolysis and we’ll find out either way tomorrow.4 It is painful and causes weakness & fatigue. Rhabdomyolysis is a serious and potentially fatal condition. Keep in mind that it’s the doctor who thinks it’s rhabdomyolysis.  Not to worry, the relative thought that the pain was all just a ruse to get attention.56 I don’t think she’s faking. If she’s got rhabdomyolysis, I know that would increase her pain level and decrease her ability to get around. It would also alter her mental status.7 Nana is at a higher risk of it being rhabdomyolysis because mom has had it.8 If she doesn’t have it, she could still be in pain or in a fatigued/weakened state for physical reasons. She could also simply feel that way because she’s depressed.9 And10 if it’s because of psychological reasons, we should still be paying attention to her.  I hope she gets better soon. She may frustrate me sometimes, but she’s one of the most important people in the world to me11 & I’m not okay with her being so sick. I know she’s not going to be as healthy as she once was, but I want her to be healthy enough to not be miserable or suffering every moment of the day.  You know who you are. ↩There are so many things I could say about this person right now, but I won’t. ↩Because mom doesn’t suck. ↩The National Institute of Health described ‘rhabdomyolysis‘ as: the breakdown of muscle tissue that leads to the release of muscle fiber contents into the blood. These substances are harmful to the kidney and often cause kidney damage. ↩A sample of two people exists. One person suck. The other doesn’t. If we’ve already identified the individual who doesn’t suck, and we have, then what person are we left with? ↩You know what? If Nana was just attention-seeking, then give her attention. She is almost eighty-three-years-old. She’s a widow. She’s had depression and mental health issues for decades. She has had so many friends and family members die over the span of her life. She loves you. You can give up a day or two to spend with her. If she wants me to come over to help her, I’ll do it. You can spend a night there. Or an afternoon. Or maybe just call her & listen. Let her talk. Let her complain. Let her have this. ↩You said you thought she was drugged, it could be that her muscles breaking down are causing her brain to be poisoned. ↩That means you could also be at a higher risk, too. If Nana has it, you need to talk to your doctor about your risk. You may hate me, but I don’t want you to end up with a preventable illness. ↩You know why this time of year is hard on her. ↩like with the part on attention-seeking ↩You were one of them once, too. ↩

When You Try Your Best, But You Don’t Succeed 


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



I just got home from physical therapy. I chose not to do modalities today.1 I didn’t have pain right after so I thought it’d be okay, and it probably will be.  Anyway, Brantley was telling me that he would be adding in more weight on the machines on Thursday. That made me wonder if he thinks my rehab is going to be extended again. So I’m a little worried about that.   Bad decision. Very, very bad. ↩

Where’s This Going


I actually haven’t faceplanted in a while, which is a good thing. I did fall a few days ago, which is not a good thing. Since then, my knee has been swollen, in pain, and bruised. It’s nothing bad. It’s just one of those partly injured things, where something that’s still in a vulnerable state from a past injury or surgery goes into a sort of whiny, don’t-touch-me-you-tried-to-kill-me-again mode. No big.  I kept exercising through it because I knew there was nothing seriously wrong with it. I still propped it up and I have to ice & prop it up to get to sleep at night. And the sleep quality sucks because pain has that sort of effect on sleep.  Anyway, I went to physical therapy1 today and told the PTA2 about my fall. She didn’t increase most of my exercises, which was kind of her. I did okay with most of the session.  Sort of.  Actually, I was quite sick most of the time. I started getting nauseated while on the weight machines. I kept going, despite getting more and more nauseated. I started realizing what I needed as the nausea gets worse.  Water.  You would think that I would have realized that earlier because I would have felt thirsty. But that’s where you would be wrong.  You see, I had sugarless gum in my mouth as I did my exercises, so that my mouth wouldn’t dry out.3 Well, when I started sweating, I could only sweat so much4 before I overheated. And I couldn’t tell I was needing water because my mouth was moist from the gum. I figured it out when I touched my face & felt that my skin was burning up.5 When the vasoconstriction/STIM treatment started, I asked for a cup of water. I was worried that if I didn’t drink something soon, I would faint or faceplant or die or something equally dramatic. Is there anything more dramatic than dying?67891011  I didn’t die.12 But I’m seriously still working on recovering from overheating. One sip at a time.13 But now I know better. I may bring my 32-ounce cup of water. Otherwise I need to speak up sooner. Overheating at physical therapy is not something I shall do again.  Two more sessions. Woot. Woot. ↩Physical Therapy Assistant, NOT Parent Teacher Association. ↩Xerostomia is a UCTD/Sjögren’s thing. ↩Anhidrosis is also related to Undifferentiated Connective Tissue Disease & Sjögren’s. Part of that is due to the attacks on the nervous system by the immune system that may or may not happen depending on the patient. Part of it is due to the fact that Dysautonomia, or a Dysfunctional Autonomic Nervous System, is common with these disorders. ↩🎶 I can’t feel my face when I’m thirsty, ’cause it’s too hot…’cause it’s too hot. ↩Yes. ↩Downton Abbey. ↩Lady Gaga fans. ↩That one person in every waiting room or line you’ve ever been in. You know who I’m describing. ↩Sarah Palin. ↩Donald Trump. ↩Or maybe I did. ↩Too much water too quickly will also make you vomit. In case you didn’t know. If you are bitching because you didn’t want to know, 🖕🏻. ↩

Let Me See You Faceplant 



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 


1
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