Physical Therapy


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


Tomorrow is the big day. I get to see my cardiologist again. I won’t pretend to be excited about it. I’m not. I’m not dreading it either. I already know what to expect & that I need not expect the doctor to be all that personable.1   I have a feeling he will be a little nicer today than he has been in the past.2 I have discovered that doctors who might ordinarily be dismissive of me because I’m fat3 are super-excited to find out that I’m trying to exercise more & lose the weight.4 Of course, they also tend to go, “How can we let you exercise when your health is so messed up?”56 And I’ll be like, “Yeah, that’s what I tried to get across to you umpteen gazillion times before.”7 I digress.  He should be happy that I’m trying to do the healthy thing. I don’t know if he will actually be happy though. Maybe so.8 And I don’t know if he’ll approve of the exercising. I hope he will. I think he will. But I don’t know he will.9 I hope he won’t send me home in a holter monitor. I hate those things. They’re uncomfortable & they don’t go well with water, so it makes showering a no-go thing, and that causes the itching in my brain10 to go into overdrive. It’s not good when I start thinking I’m dirty.11 I know that UAB wanted a new echocardiogram ordered, but I don’t know if the cardiologist will want to do one. If he does choose to do an echo, it’ll probably be done tomorrow in the office.12 So if I go through one & find out the results before I leave,13 I will try to write an entry about it.  Oh, I went to the pool twice last week and again today. Last Friday, a woman asked me if all I was going to do was walk back and forth in the pool14 and asked how many more times I would do that.15 Anyway, I just shrugged & told her that I had no idea. Today she just smiled & headed to the other end of the pool.16  In other moments of awkwardness, this time online, there is this annoying ass group of people from Louisiana who just won’t go the fuck away on Twitter.17 LSU has let in some truly awful people into their institution as Freshmen for the 2015-2016 school year. Not only are they ignorant assholes, they know jackshit about SEC football. They thought my preference of Tigers18 wearing orange and blue meant I liked Clemson. Ew. When I pointed out that Clemson was orange & purple and not in the conference, they continued to harp on my “liking” Clemson19 and said there was no way for them to know that Auburn was the school I was referring to20 because they have lives.21 Anyway, they’ve kept my block button busy. I don’t understand how “adults” can be so childish. It’s just pathetic. They’re pathetic. I really pity them. Bless their ignorant little hearts, the real world is gonna eat them up.  Photo via Visualhunt.com He’s not. ↩Not that he’s a douche. He’s nice, but he’s not really the soft-eyed, overly compassionate type either. He’s the former head of the cardiology department at Huntsville Hospital, and the hospital is a top cardiac facility in the country, so he’s got medical skills. I’m in good hands. ↩So pretty much all of them. ↩Great self-esteem boost, guys. ↩Not a direct quote. ↩But “so messed up” is a scientific term. It’s gotta be. ↩I put off exercising for a long time for a lot of reasons, but the fact that various doctor<strong><em>s</em></strong> had told me over the years that my lungs or heart or joints or other issues weren’t healthy enough for exercise played a major part. ↩Fingers crossed. ↩That makes sense, right? ↩OCD. ↩OCD may look like a quirky, fun time. It isn’t. ↩They have a room where they do them. ↩Unlikely. ↩Bitch, I might be. ↩Until I’m hungry or tired or thirsty or some combination of these things. ↩Did I just level up on socialization? No? Damn. ↩I’ve blocked so many members of this one girl’s social group. ↩Not the cat kind. ↩Ew. ↩It’s called Google. ↩This is why they felt the need to tweet me on repeated occasions to compare me to Godzilla & various other monsters. Tweets they felt obligated to make because I don’t like Trump. Yeah, what awesome lives they must lead. There are shitlords out there who have more respect for others. ↩

Every Super-Fast Beat of My Heart



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


I don’t run. I can’t run. I shouldn’t run. I have asthma, Ehlers-Danlos, chondromalacia, arthritis, a murmur, & tachycardia. Running, even jogging, isn’t recommended for me. Actually, that’s putting it mildly. A more accurate statement would be: pretty much any doctor, physical therapist, or other medical professional would rather I be murdered than have me running or jogging. The same goes for how my parents feel about it & how my body feels about this. So I don’t run.  Except I did.  This afternoon.   Because I’m a lot more competitive than I usually will admit to being, I decided I wanted to beat my time from my walk earlier in the afternoon.1 I decided it would be totally safe to jog a total of three or four feet. No big deal, right? Anyone can do that.  I. Was. Wrong.  I didn’t fall. I’m pretty sure I didn’t tear anything. I didn’t stroke out or have a heart attack or an asthma attack. My knee is a little bit swollen & red. It’s not really sore or anything. Just some overuse. I’ll take the day off from walking tomorrow or I’ll do some short walks—something that will let me recover.  I need to remember that I have to be careful with my body, even when I’m feeling super-competitive.  And I totally did. ↩

Jog, Janet, Jog



Well, I’ve gone to the Wellness Center twice in the last week. Last Thursday was the first time. Today was the second. I’d hoped that I could go Monday or Tuesday & Thursday or Friday of this week, but Monday wasn’t doable12 and yesterday was supposed to bring storms during the Independent Exercise time.3  Technically, today wasn’t doable in the Indepedent Exercise period either. I went during the 3 Lane Swimming/Independent Exercise slot. During that time, three lanes are devoted to lap swimmers & one to people doing independent exercise. Well, they’re supposed to be. There were lap swimmers in all four lanes. Having to dodge them & getting splashed as they went past was just so fun.4  Of course, I had even less of the lane than any other exercising/swimming folks because I can’t swim. I really need to figure out how that works. You would think I would have figured it out during all of my swimming lessons as a child.5 All I learned was how to float.6 Anyway, I went and I exercised, so now I can look upon people who didn’t with haughty derision.7 I don’t know why. ↩Also, it’s totes cool to use the term “doable” when talking about your schedule. When talking about another human being, it’s definitely not okay.  ↩The storms decided to sleep in or something because they didn’t get to us until pretty late on Tuesday. And most of those storms were in South Alabama & along the Gulf Coast. I’m sure many have seen the trio of waterspouts that hit Louisiana & the building where all that was left was a set of brick steps & a leafless tree. ↩If you can’t tell I was being sarcastic, you need to leave. ↩No, really. I took so many swimming lessons in my childhood. I never caught on when it came to actually swimming. ↩I kick ass when it comes to floating and one teacher said that floating is a better safety technique. 🤘🏻 ↩Isn’t that the only real benefit to exercise? No? Dammit. ↩

Jumping Underwater 


After yesterday’s appointment with a family practice resident, I have a partial medical clearance to exercise at the Wellness Center. The clearance will be reviewed next month. At that time, I may be given an expanded medical clearance or I may have to wait another month.  The doctor yesterday wasn’t sure why it was denied last week for the Ehlers-Danlos. But he was concerned that it wasn’t denied or limited for other, more dangerous aspects of my health. Specifically, he was worried about the tachycardia and asthma.1 I will be limited for the next month on exercises I’m allowed to do while there. I’m allowed to do pool therapy exercises and walking. The resident and attending aren’t sure my heart and lungs are healthy enough yet for unmonitored/unguided aerobic exercise. The resident hinted that he thinks I may need to see a cardiologist since it has been so long since I’ve seen one.2 At least the whole your-heart-may-not-be-ready-yet reason makes more sense than your-joints-that-sprain-even-when-you-don’t-move-could-sprain-if-you-exercise. Though I am a lot more aware of when my body can handle exercise than people who aren’t me.3  Convincing doctors that I know my body and its limits is next to impossible. Another example of this is that the doctor started to tell me the warning signs with asthma. I’ve had the disease since I was around a year old. I knew the mechanics of asthma by five. I literally had a children’s book that explained the parts of the respiratory system, how allergy triggers work, and why I needed to understand why I couldn’t be around smokers, flowers, dust mites, etc. at that age.4 I don’t smell flowers, go in businesses that allow smoking on the premises, or ignore my unique5 symptoms. I also knew, without him telling me, that I was not supposed to run.6  I don’t want to seem completely ungrateful. I am grateful that I got any release at all. It’s just frustrating to have someone think I don’t get what’s going on. I may seem naïve, but that doesn’t mean I’m not informed.  Oh, I finally got the inhaler prescription that I’d been trying to get for months. I had tried to get other doctors to understand that I needed an inhaler that hadn’t expired two years ago, but it just went in one ear and out the other.  Tachycardia and asthma can be complicated by or occur with/as part of hypermobility issues, including Ehlers-Danlos Syndrome. ↩There is no good reason to do so. The cardiologist said he didn’t think there was anything he could do because treating the tachycardia could complicate other health issues, i.e. my typically low-ish blood pressure. ↩For example, if my heart is just at 100-115, starting to exercise is fine. 120 is okay if it’s very, very low impact. 130-140 is no exercise, relaxation techniques need to be started. 140+ is hospital-worthy. ↩When I was four, I was admitted to the pediatric unit of Huntsville Hospital with my asthma. Lung and allergy doctors, as well as my parents, decided I was old enough to understand my disease. ↩I have cough variant asthma, which means I don’t wheeze and may have no other symptoms besides coughing, even mid-attack. ↩I’ve never really run in my life because I’ve had asthma since I was a baby. ↩

Rápido



Well, I scheduled the appointment with a family doctor. Not mine. Mine isn’t on the schedule for the rest of February and they don’t have her schedule available for March either.1 I don’t know the doctor that I will be seeing. I’m not anticipating anything good coming from the appointment, but I knew I had to make it anyway. New doctors and me don’t really mesh well. Actually, doctors in general don’t mesh well with me.2 My doctor has had some cringe-worthy moments, but she does listen to me. She understands that I am trying to take care of myself and I’m not trying to do something that my body cannot handle.3 And she’s encouraged me to exercise in the past.4 I’m hoping that she can talk to the doctor who will be seeing me or leave a note in my chart explaining that I’m not a complete masochist who wants to die from falling off a stair-stepping machine. I sent her an email explaining that I needed her help. I need a medical clearance for the Wellness Center to continue my physical therapy exercises on my own. A form was sent one to you, but I was called this morning & told someone else denied clearance because of the Ehlers-Danlos. Specifically, they mentioned skin involvement, which is mild for me. I know what exercises I can and can’t do without hurting my joints. The only things I was thinking of adding in were Pilates and pool exercise, which are both considered safe for people with Ehlers-Danlos because they’re low resistence, high repetition. I’ve never met the doctor that I’m supposed to see, which is hard for me because I tend to be intimidated by new doctors & feel like new doctors don’t always listen to me. I’m scared if Dr. ******** refuses that the strength I’ve built up since last summer and especially since the surgery will disappear. I’m worried that without continuing to do the exercises I will end up having more surgeries. Can you help? Hopefully, she’ll be able to do something. I also sent her one letting her know that I did try to get an appointment for the mini-pill prescription. I tried to schedule an appointment for the Norethindrone prescription, since it is a high-risk medicine for me, but the prescription was called in without an appointment. I thought you might want to know that I haven’t had any signs of clots while I’ve been on it. I also haven’t had any excessive bleeding while on it. Dr. ******, my hematologist, said that being on birth control is going to give me another year without infusions, but that I will probably need one this coming December or next year sometime based on my ferritin levels. I want her to know that I am trying to do things that I’m supposed to do to prevent future health problems. I’ve been by past doctors accused of not trying to take care of myself. I refuse to be blamed for these things. I refuse to let doctors, nurses, and random office workers5 who don’t know me and who don’t care about my overall well-being sabotage the progress that I’ve made and risk my life in the process. UAB Huntsville is prone to this sort of “well they aren’t on the schedule” and “oh, we don’t have a schedule for next week or next month available yet” thing. They do it to every patient, no matter what is wrong with them. No matter how dire the situation. And I’m not saying my situation is dire, but they’ve done it with my mom when she’s tried to schedule appointments for diabetes and blood pressure. ↩When you have a soft voice and you cry easily, doctors walk all over you. When you have a soft voice, cry easily, and chronic illnesses, they walk all over you while wearing heels that have Lego blocks on the bottom of them, bumpy side down. ↩Or she has acted like she understand this. ↩If she doesn’t support my use of the Wellness Center, then she’s being hypocritical. ↩The person who decided that I didn’t need the appointment for the norethindrone prescription was a receptionist with no medical training. ↩

Blood, Sweat, and Tears




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?


I actually graduated from physical therapy yesterday.1 I didn’t get to go by the Wellness Center to sign up, though, because there were other things that needed to be done yesterday afternoon.2 I will either do it this weekend or some time in the next week. I may have to get a ride from my mom instead of my dad to get it done.3 I need to get my license so that I am no longer so dependent on the schedules and whims of others.4 I can’t get it until my bank situation gets sorted out.5  Happy dance. ↩Because life. ↩Asking him for rides always leads to me having panic attacks. ↩I have my own whims, dammit! ↩I’ve reactivated my GoFundMe because of some overdrafts I received after attempting to cancel some orders I didn’t mean to make. More about that is mentioned on the page. If you can help, I’d appreciate it. ↩

Actually Graduated