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Tuesday, May 24, 2016
All of us have to figure it out on our own sometimes. And, sometimes we have to make tough decisions and we feel like we just aren’t sure if we know what we’re doing. But, we march on anyway. This is true for all of us, in every part of our lives, all the time, at every turn. It’s just what you expect; it’s part of life. For those of us with diabetes, it is an every day, 24/7 way of life. Like my friend Marcus says, we live like we’re doing third grade math in the back of our head all the time. But, you get used to it as the days, weeks, months, years, decades go on. We’re humans – we get used to the worst shit without even trying.
We runners live this lifestyle, too. We don’t know if we’re making the right decisions when we push through a workout or a long run. We don’t know if we made the right decision when we decided to cut it short. Some of us have good coaches who keep us on track, but even a good coach doesn’t guarantee things will always go right. Sometimes, you wake up one morning and that IT band is on fire and you have no idea why, right?
Between my running career of past and my array of auto-immune diseases, I constantly find myself in this position where I have to make my own decisions. With diabetes, it’s pretty much the norm. Since part of my academic research (History of Medicine) was on the development of diabetes treatment, I understand a lot about how this system of patients being left to develop their own treatment plans came to be. It seems odd, then, that quite the opposite is the case for most other medical encounters. In most other areas of medicine, the norm is that patient shows up, doctor tells patient to take medication X, patient does as told and all is well or patient comes back to say that prescription is not working and patient is labeled “non-compliant.”
For the most part, I feel like I have been lucky to have good relationships with the physicians I’ve had. I have run into a few over the years who were pretty bad, but I have no problem with just getting up and walking. And, I have. But, with all of the stuff I have going on now, I find myself in several clinics, seeing a variety of specialists, and then there are any number of providers that I might see in any of these clinics. So, essentially, I feel like at any given time I am juggling lots of providers of all types and all personalities and all different approaches … and few of them have any desire to listen to what I have to say. My primary care provider is the bestest of the best, though, so that is awesome. Endocrinology is good, but the providers swing in and out, changing all the time. Right now, I’m seeing a PA who I love. I also am seeing an awesome orthopedic doc, but got referred to a colleague of his for a procedure and the physician I was referred to decided that a different procedure would be better. It wasn’t and I am now being charged triple (actually even more than triple) the price and am arguing with the insurance people. It’s complicated. We’ve all been through these things.
This is my bestest primary care doc, John Kallianos.
I’m also in the Neurosciences Clinic for my Stiff Person Syndrome. I have seen eight or nine different providers in that clinic already … in less than two years. It’s been difficult because they all have different ideas. One tells you to do things one way, the other another way, and then someone else gets upset that you are not doing what they want. It happens in other clinics, too, so it’s not unique to Neuro. It’s still frustrating, though.
The overall most frustrating thing is juggling all of this and trying to keep some sort of balance in light of a very unpredictable disease that can have me go from feeling pretty good one day and being so excited that I have less pain than usual, to needing crutches just to get out of bed and being in terrible pain with muscle spasms and contractions so severe that they can break bones. In fact, about 18 months ago, I was in horrible pain because I had four pelvic fractures (both superior pubic rami and two sacral fractures). Pelvic fractures are the most painful fractures you can have. But, I couldn’t get any of the specialists I was seeing to believe how much pain I was in. Finally, when I started having trouble peeing, my primary care doctor sent me for an emergency MRI which showed diffuse, severe bone marrow edema and four fractures. I was in to ortho first thing Monday morning, taken off of meds that were most likely culprits in the bone marrow edema, put on a set of meds and supplements, sent for steroid injections for pain relief, and put on heavy duty pain meds. I was on crutches for months. Other specialists were actually upset that I was taken off of meds and one fellow actually even wrote a clinic note intimating that I was a pain med seeker. Yes, really … four pelvic fractures and I was a pain med seeker. I was more than furious.
IVIG day at the infusion center at Duke.
Okay, so why do I write about all of this? It’s not to bash anyone. They all have clinics that are over-filled and the insurance hoops to jump through make everything incredibly difficult. But, like all patients, I want good care, I want to be the most important patient, I want to be listened to, I want to have input in my care … I just want what every patient wants. It reminds me of something my colleagues and I talk about each semester – how each of our students think/act like they are our only student (though we have 75 to 100 students each semester); I remember how I was that student, too! I used to go to my professors’ offices without appointments, just to see if they were in, thinking that all of them knew my name immediately and that I was somehow their favorite and best student. It’s sort of the same thing when you’re a patient, I guess. And, when you’re many patients wrapped up into one person, it’s difficult at best.
Being diagnosed with Stiff Person Syndrome has been the worst part of all this so far. It is unpredictable in how intense the symptoms will be from day to day. In retrospect, they think that I had actually been developing SPS since 2009 (maybe earlier) but was misdiagnosed over and over and over. But, things had progressed. I had developed several other auto-immune diseases and the neurological signs had become more focused, with stumbling episodes, falls while running when something crossed my visual field and startled me, intensely painful muscle spasms, coordination problems, etc. Then, one morning, August 6, 2013 to be exact, I walked to the end of my driveway, took a step to start running, and fell down in the middle of the road. I looked around frantically, thinking that I had been tackled by some attacker or something. I got up and shook it off. I again went to take a step to start running and fell down again. It was like my brain had forgotten how to run. I couldn’t run; I couldn’t make my legs run; I couldn’t remember how it was supposed to feel. I could barely walk back down the driveway. I wasn’t in pain, but I was in big trouble.
Fast forward to this year. It’s been up and down, but mostly pretty rough. People don’t understand when you look okay on the outside but you’re sick on the inside. It’s hard to get people to understand that you have incredible fatigue and pain, but that you feel better when you force yourself to exercise. It’s hard for people to understand how I can go jog one day and then be on crutches another day. But, I had figured out a lot of things during the time that I had been sick without a diagnosis. I had figured out, for instance, that very long bouts of aerobic exercise acted sort of like a medical treatment for me. I have spent many hours doing nothing but reading articles on SPS and studying textbooks on Neurology and Immunology. Certain immune cells in my body attack a chemical called GAD-65, glutamic acid decarboxylase (the 65 is just the molecular weight as there is another GAD with a molecular weight of 67). Anyway, GAD splits into several chemicals important in neurotransmission. So, long story short, glutamate begins the Krebs cycle inside your muscle cells and GABA (formed from the split of GAD) then tells the cell to stop firing. I don’t have enough GABA … that much they know. But, I have read a lot about something called a “glutamate storm” that can be toxic to neural cells by opening them up to allow a rushing influx of ions like calcium. I have a theory that the really long bouts of aerobic exercise have been protective because they interrupt the glutamate storm.
I started trying to build up “long workouts” again. I started by getting up to two sessions of 90 minutes each on the elliptical. I’ve kept trying to add “joggishing” in, mixing it up, lengthening it out. In short, it has helped. But, it’s unpredictable still. I can still have days when I feel pretty decent and days when I can barely get out of bed or need help getting up. The other day, I was out in the garden, something I wasn’t able to do last year with the pelvic fractures healing, and when I stood up my left leg wouldn’t work correctly. It felt almost exactly like that morning I fell down in the road at the end of the driveway. I was completely terrified. We debated going to the ER, but decided no because every ER visit has been a complete waste. I took extra GABA meds, put heat on my back, and waited. After about 3 hours, things began to improve and we paged the fellow on call, but got no help. This morning, I did a long aerobic workout. The key seems to be keeping it aerobic. I don’t know how much time this one will buy me in terms of some relief, but even with the post-exercise fatigue, it helped. There is a guy with SPS in Tasmania I think (Shane James) who took up ultra-running after his diagnosis because he figured out this same thing on his own … that long bouts of aerobic exercise gave him some sort of protection against the ravages of SPS. He had his disability taken away because of his exercise. Nice, huh?
… feeling better after a long aerobic workout.
There is so much I don’t know, but there is so much I know, even if I don’t know how to connect the dots. I wish I had someone who would work with me on this. I guess that’s about where I am, where you are when you have to figure it out on your own.