Monday, October 3, 2016
Of course, I feel so slack for not posting any kind of update. I have been so slow answering emails, too. Part of it is the difficulty I have been dealing with about my health problems and my increasing loss of functional status. Oh, yeah, the pain hasn’t helped either. In the pic below, that is not a shadow; it is the bruise that an arm muscle spasm caused when it tore the muscle. They’re worse when they happen in my back.
There have been healthcare provider problems as well, but I won’t go into that in any kind of depth here in such a public forum, but I’ll explain a little bit of it (mainly so that others with similar problems will know that they are not alone, but also to give others a little bit of insight into how much the medical profession is sort of incestuous in how they control each other).
It seems that the pelvic fractures and bone marrow edema that happened when my neurologist put me on a combination of mycophenolate and high dose prednisone has caused some permanent damage. Despite my repeated efforts to report the problems that the medication regimen was causing, I was ignored, even bullied into continuing the regimen. My primary care doctor and the ortho doc I ended up being sent to stopped the meds. I have been working with a great orthopedic team and they have been trying everything they can to improve my functional status and to decrease the intense pain I have every day. They have told me that some of the damage appears to be permanent, though. It makes me mad because these were extra problems that I did not have and did not need to end up with, but ….
In addition, unfortunately, now the big hits of prednisone have thrown me into adrenal failure. My endocrinologist has said that it is probably what is called Iatrogenic Adrenal Insufficiency (meaning that it was caused by the medications and may be reversible, but maybe not). So she has been working with me on that and finally had to send out a letter to all of the other doctors I’m seeing that she is the ONLY one who has the authority to control corticosteroid dosing, period. I had lost 15 pounds in about three weeks, had mentioned it to several healthcare providers who did not even react, and then my primary care doctor picked up on it before I even had a chance to go through my list of issues (yes, I know I’m OCD, and I go to the doctor with a list). I went from 118 to 103 pounds in about three weeks. He had looked at my medical record before entering the exam room and brought me straight back out to the scale to weigh me again. So, he then asked several questions about adrenal failure … yup, yup, yup, yes, I think so, etc … and tested my cortisol level = 2 (that’s seriously dangerously low). I don’t know what I’d do without my primary care doc! Dr. Kallianos is the bestest of the bestest. Actually, the entire private practice he is in is great. They picked up on my bone marrow edema with two pubic fractures and two sacral fractures while I was dismissed by others (so four pelvic fractures … no wonder I couldn’t walk and was in sooooo much pain); they picked up on the c. diff. infection I had contracted and treated me for it; they found my adrenal insufficiency while everyone else ignored me; they have taken me seriously on my pain issues while others have not.
My Endocrinologist, Diana McNeill, has been my other great physician. I have seen her for about 18 years now. She jumped on the adrenal insufficiency right away and even called me hours after the Emergency Room visit that was triggered by the adrenal issues. She is great. I have a girl-crush on Diana McNeill!! She’s smart, direct, honest, capable, up-to-date, and compassionate as well. She is wonder woman, really!
Anyway, with all of these things going on, I have just had no real motivation to write anything. I have been in a funk. I think the biggest problem has been pain. It has also been extremely difficult to see my coordination and functional status continue to get worse. It has also been frustrating to have healthcare providers tell me that I’m doing so much better when I’m getting so much worse (even ones who have seen me for the first time … WHAT?!). They enter the exam room without even reading my chart and then are surprised that I have had three ER visits, or whatever.
Suffice it to say that I have just had this mudslide of difficult things to juggle. At least I have Dr. K and Dr. McNeill. And, I have been seeing a psychologist mostly weekly since all of this started and he has been amazing as well. He has really helped me learn to put things into proper perspective, to compartmentalize things so that I can think clearly about what I have control over and what I don’t, to vent when I’m frustrated and upset, to help my husband feel like he’s not alone in space somewhere dealing with being a family-caretaker with no support, etc. I would really recommend that anyone facing a serious, chronic disease seek out therapy to help you learn to cope with all of the unexpected things and even the expected ones. I would also recommend that you have your care team split, so that they are not all in one single group. I say that because being in a tight group with no separation can blind providers to your individuality; it can make them susceptible to the pressure to follow a treatment plan that may not be working; and it limits their ability to recommend tests or treatments or ending of treatments that might disagree with another provider. I have actually been asked (I would hesitate to say pressured yet) into switching my primary care doc and my endocrinologist. They are both sort of outside of the system (my primary care doc is really out of the system as he is in a private practice that is only affiliated for insurance purposes). Also, my psychologist is really outside the system. My Endo is just sort of separated.
Well … that all has sounded so upbeat, huh?! I apologize for the rant there. I could have made it worse, so at least I held back a little!
I am really looking forward to Fall. I am hoping that getting my adrenal problems addressed, continuing to work on my bone marrow issues, and getting pain down to a manageable level will all help me to be able to get out in my garden to get some Fall/Winter lettuce planted, to transplant some things, to do some weeding, etc. I also want to be able to do my PT exercises!! And, we are having someone come in and service my treadmill so that I can start trying to do some walking/joggishing on it while holding onto the bar (it keeps tripping a breaker right now so I can’t use it). Currently, the only way I can walk/joggish is to go to a dirt trail and use my converted baby jogger (it puts me forward between the two back wheels and gives me a bar to hold for support so that I don’t fall. My husband and a welder up the road made it for me! (insert smiley face)
The only problem at all is that the back wheels sort of nose inward slightly at the front and so if I try to take it on pavement, it bounces side to side to side to side, etc. We are going to try to fix that problem, but all else is great. It doesn’t do the bouncing thing on the dirt trail because the sandy dirt allows the wheels to “slide” just enough. I suppose it still creates some drag that I’m not aware of, so once we fix it, I’ll bet it will be even that much better on trails. Pretty much, though, I’m feeling like I’m married to this thing right now if I want to get outside, unless I want to “run” 13 minute miles, walk, or fall down (or all of those). It folds up and fits right in the back of my car! And, it has a little shelf with bungie cords that I put all of my stuff on (i.e. drink, Gu, test kit for blood sugar if needed, cell phone, etc.). Oh, I also think I will get a stop watch with big numbers to attach to the bar so that I can just look down instead of having to let go with one hand to bring my watch up toward me. Letting go with one hand feels really unsteady right now!
Well, since roads really suck for me at the time, I send out a true Happy Trails!!!!
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.
Thursday, April 28, 2016
Okay, okay, okay … yeah, it has been almost two months since I last wrote a blog post. I will not bother to explain why; there are a lot of reasons.
I wanted the next post to be a follow-up to the beginning years of my running by pulling out examples from my old training logs. Instead, I want to catch everyone up on where the hell I’ve been for two months. Then, I’ll get back to the other stuff!
My auto-immune disease problems continue. The Stiff Person Syndrome has been giving me quite a bit of muscle contractions, spasms, etc and it gets pretty painful at times. I finally had to break down and do a big prednisone pulse to try to get things quieted down. It started to help pretty quickly, so we started to taper it back down … things began to flare back up. We went back up on the prednisone. Things got better. Blah, blah, blah, you get the picture. Well, I ended up having a really, really, really bad spasm in the leg muscles inside my shin (tibialis, peroneus, I’m not sure, something between the tib/fib). The long story short is that I am 99% certain that it caused an avulsion fracture in there; it is sort of like a stress fracture, but what happens is the muscle and tendon attachments pull the top layer of bone loose. It feels like a stress fracture and it acts a lot like a stress fracture, but it heals a little faster (I hope it will at least). Anyway, it hurts a lot. And, the muscles are STILL in spasm … since Monday. Damn. Okay, so I’ve been whiny and just a little difficult to get along with for the past few days.
Bob has been doing well since his surgery for prostate cancer and I am so very, very thankful for that! Things have gone well enough that I was reminded the other day that I need to remember that he actually had a very stressful event and that I need to think about whether I’ve been so focused on my own problems that I haven’t given him enough support in dealing with the trauma of having all that happen. I thought about all of that and, well, it’s true. It’s not that I didn’t care as soon as I knew he was okay, but I just got my head right back into the hole in the sand that I’ve been stuck in for a while now. As I’m writing this, he is “watching” the NFL draft … he is actually snoring, so, um, yeah. It’s a guy thing, right?
On another note, we have been learning more and more about gardening. Last year, I was so sick that my veggie garden was pretty sad, but my little cottage garden and my azalea gardens were okay. This year, we are trying to expand a Crape Myrtle and Crab Apple section we had started a couple years ago. The original idea was to make a path through an area on the edge of our yard that was pretty much unusable because it sort of looked like it was the next door neighbor’s yard because of where the original owners of our home had placed a wood fence for roses on one side and muscadine vines on the other. We actually didn’t even find out how much of the land was actually our land until we had a survey done and found out that even the end of their driveway was on the tip of our yard (not that it bothered us). Anyway, I really want to make my path around the two acres we have for walking, jogging, and riding my mountain bike, so I need to use every part of the yard I can to make the path cover as much as I can. So, we’ve been transplanting Crape Mrytles, Crab Apples, Redbuds, etc. to outline a path that will give shade eventually. I think I’ll put some dogwoods there, too. One huge problem we’ve run into, though, is the geese! OMG, those are the dirtiest, loudest, nastiest animals ever. And they seem to love that area. We’ve been trying everything and I think we’re going to have to put up some chicken wire eventually. Oh, and the beavers! They took down several unimportant trees, but they also took down one of Bob’s Weeping Willows. Now, everything has fencing around the trunks. Good grief! Who would have thought that it would be so hard to plant trees.
At least the veggie garden is way better this year since I’m doing better than last year at this time thanks to the IVIG infusions. We almost have lettuce ready and my tomatoes already have flowers. I have red potatoes, carrots, radishes, cucumbers, etc. It’s really coming along.
Well, there is more. There is always more. But, I need to get to bed and my medication regimen at night and in the morning is complex, so I need to give myself time to do all that before getting tucked in. I hope that everyone is doing well!
Tuesday, March 1, 2016
I started running in 1992. I was 28 years old. My husband had gotten back from the Middle East where his Army Reserve unit served six months of active duty. I started working in medical research. I started running after having an emergency appendectomy that turned out to be gastroenteritis and, little did I know at the time, the beginning of my auto-immune syndrome. My husband was running two miles several days each week because of his Army stuff. I had been pretty active as a kid growing up with all brothers, so I thought, yeah I could do the running thing with him, easy-peezy. My first day out there with him, I think I got in one mile total and I hurt so bad it was ridiculous – even my ears burned. I remember asking my husband, “are your ears supposed to burn like this?” I had never run in any kind of formal way and the track we were on was at the Duke Preventive Approach to Cardiac Health Center, DUPAC for short, and it was not a specified distance, just whatever would fit in the spot they had for it. I say this to explain why I was so confused the first time I did a real track workout with a coach and had no idea what the lines on the track meant or how far different distances were. He just had to tell me to start running and that he would yell faster or slower when I got to the far side.
I met my friend Wade Clark at DUPAC. He was going there because he had a heart attack a year or so before that, had technically died, been zapped with the paddles, the whole deal. Wade would run past me, lapping me, patting me on the back, and saying “good job.” He meant well, but he has no idea how close he came to getting tripped each time … yeah, a dead guy was lapping me on a track for which I had no idea of the distance. One evening, though, Wade walked up to me and had a piece of paper in his hand; it was a flyer for a road race, a 10K road race. We asked someone how far 10K was and she replied, “about 6 miles.” Wow. We thought about whether we could do that. We knew we had gotten to the point that we were probably jogging about 3 miles a few times each week. “Oh,” she said with some sense of authority, “you really only need to be able to run half the distance regularly to be able to finish the race distance, so you guys should be fine.” Okay, then, we would do it.
That race was in March 1992. I do not know what my finish time was. I did not know to time myself and it was before the results were kept in an online format and the race folded after that. But, I ran another 10K in April and finished in 54:09. Two weeks later, I ran another 10K and finished in 50:41. I just continued with this unstructured running/jogging and trying out theses different races. I had no idea how to race, no idea what a workout was … I just ran because it was pretty cool to be able to get outside and feel strong. I met some people and really felt like it was an incredible sense of accomplishment every time I went out and learned of different places to run. Mostly, I began to run on the trails in Duke Forest. I got faster, but still had no idea if I was a good runner, a bad runner, a mediocre runner, or what. I rarely wore a watch because I didn’t have a runner’s watch; my watch still had an hour and minute hand, so it was hard to know what I was running.
Finally, after two and a half years of running when I had time after work and going to races with Wade or a few other friends, the coach at Duke saw me trying to run around the track one evening in the Fall of 1995. I wasn’t sure what I was doing, but I had a real runner’s watch and I had picked a couple lines and would try to run faster from one to the other, or I would try to go all the way around the track to see how fast I could run a loop. Coach Norm asked me a few questions about what I was doing and I admitted that I had no idea actually. He asked me if I wanted to try doing some workouts and actually learning how to race. Okay. That’s where it started. The first day I showed up, Norm told me I was going to run “a basic workout of 8 x 400.” I just looked at him with a blank stare, “what’s that?” He asked me if I had ever been on a track before. “Well, yeah, I’ve stepped on a few and ran around them, but if you mean racing on one or something like that … no, never.” He asked me if I knew how many miles per week I was running and I told him that I was pretty sure it was somewhere around 35 to 40 miles but I never timed it so I had no idea if I was running fast or slow or medium or ….
I did the track workouts with Norm for a couple months and then he told me it was time to try a race. I had run a few 5K races, but wasn’t certain what my times were, only whether certain women I had seen beat me or not. I knew I was running 20 minutes something, though. My first race after working with Norm, I ran 18:57 and won the race. I was ecstatic!!! A few weeks later, he had me run a one mile time trial on the track and I ran 5:38. By the time the Spring semester started, Norm’s track duties had expanded and he didn’t have time to continue working with me. I remember being devastated. So, for pretty much all of 1996, I just went back to the same old running when I had time, going to road races on weekends when I could or when I knew about one. That summer, I joined the local running club and ran in their summer fun run track meets. I got my 1500 meter run under 5 minutes and I ran a 5K in 18:31. I also ran an 8K in 29:51 that summer.
It was then that one of my best running friends, Jim Husk, said he would coach me if I wanted. I decided to go ahead and give it a try. Why not? My 5Ks stayed in the mid 18s; I ran a 58:06 15K; and in December of 1997 I ran a half marathon in 1:23:04 and won. In February of 1998, my coach got me an invite to my first National Championship race, the Women’s 8K in Columbia, SC. I ran 29:30 and finished 30th. I had wanted to run faster and finish better, but I ran in a National Championship … and I wasn’t last!
As my race times improved over 1997, I decided that I wanted to keep training and in 1998 try a marathon at the end of the year. I ran Kiawah Marathon in December and was hoping for sub 2:50 (which would have qualified me for Olympic Marathon Trials). It was a long shot, but I wanted to try.
In August, the world got yanked out from under me. I was diagnosed with Type 1 diabetes. Everyone told me that my running was over. I tried to find a runner with diabetes who was running at the level I was approaching, the level I was sort of straddling. There was nobody. I mean, there was nobody. I found the name of a physician who was listed in an American Diabetes Association index as someone who specialized in diabetes and exercise. I thought, okay great, I’ll get in touch with him and find out what I need to do. I sent an email and told him I was training to qualify for Olympic Marathon Trials and had just been diagnosed with Type 1 diabetes. He sent me a short note back the next day. Cutting right to the chase, he told me that “if a diabetic could qualify for Olympic Marathon Trials, it would have already been done.” Okay, I thought, game on.
I ran my first marathon that December in Kiawah, SC and finished 2nd in 3:00:45. I puked at the finish line. I puked some more later. It had taken everything I had to finish. I was fine until about 16 or 17 miles and then the wheels fell off. It was terrible. My coach gave me a couple days and then told me all of the things I had done wrong, what we needed to do to fix those things, and told me I was registered for another marathon in March. WHAT?! Oh no, I wasn’t trying that again! Yes, he insisted that I needed to get right back on it or I would always be afraid of it. So, from December 1998 to March 1999, I thought about nothing but getting ready for that marathon.
I ran the Shamrock Marathon in Virginia Beach in March 1999. I ran 2:49:47 and became the first diabetic runner ever to qualify for Olympic Marathon Trials. That race felt like the easiest race I had ever run. I went in with no expectations. I told nobody that I was going to run it. We had already set up a bail-out plan in case things didn’t go well. That was the beginning of my professional running career. It was my first race after being contingently signed onto the Moving Comfort Racing Team a few months earlier. It was a dream come true.
The rest of 1999 continued to go well and my race times continued to drop. My weekly mileage increased into the 80s. My workouts got harder. My 5K came down under 17:30. My 10K came down pretty far under 36:30. I ran a sub 60 ten miler.
Okay, next post, I’ll give some details on how I started doing workouts and how they changed along the way. Then, I’ll move on to my road running career and my transition to ultra running.
But, for now, Happy Trails!!
Monday, February 15, 2016
I actually watched the end of the men’s and women’s marathon trials races on TV Saturday. I wasn’t sure if I could handle watching. Ever since this neurological disease has knocked me down, it’s very hard to watch people run. For a while, I couldn’t even stand to see someone running in the background on a commercial on TV. It just hurt.
I watched the end, though. It didn’t feel the same as it used to when I would watch a race. I felt pretty disconnected from it … and I was kind of glad that I did. I was able to enjoy seeing the athleticism of the athletes without having that desperate feeling in the pit of my stomach. This was even more surprising because of how things went with my Neurology follow-up on Friday.
So, I cried in Neurology Clinic Friday. I didn’t mean to … of course I didn’t mean to … I didn’t expect it. I had a couple good days a few weeks earlier and maybe I had started thinking that there was hope that this would all go away and that one day I would walk out the door and just run off down the street just like normal, just like I’d done for years and years, that it would feel effortless, that I would feel strong and coordinated, and that I would be able to stop taking handfuls of meds every day, that I could sleep at night without worrying something would go wrong, that I could depend on myself to drive everywhere …. Yeah, well, right from the beginning, the exam was so obviously abnormal that even I could tell how abnormal it was. My husband was sitting in a chair on the left side of the exam room and I couldn’t look at him. I thought I had held it together and then, bam, the tears just popped out like little water bullets.
It’s hard not to dwell on all of this, but I can’t help it. Part of that comes from the nature of the problems I deal with, like pain. It’s really hard to ignore pain every single day. Some days are better than others, but I hurt every single day. I set my alarm for 5:00 am every morning so that I can take a set of “pre-meds” for the day, go back to sleep for an hour, and then get up. I do that so I can actually get out of bed without needing help because of pain, leg coordination problems, back spasms, etc. I’ve actually just recently moved the alarm up to 4:30 recently so that I can start getting ready for when we change back to daylight saving time so I’m not making such a dramatic change all at once. Even doing the “pre-meds” routine, it still takes me about two hours until I’m pretty functional. The cold weather we’ve had recently has made it worse. And, that actually gives me an idea for how I can explain what the stiffness and coordination problems feel like. Do you remember going out to play in the snow when you were a kid and your hands got so cold making snow balls and such that when you came back inside, you could barely bend your fingers and had very little control of your fingers, like you couldn’t pick up something small or twist the cap off a soda bottle until your hands got warmed back up? That’s how my whole body feels, but mostly my legs and back and abdomen.
I also have pain all the time. It’s worse first thing in the morning and last thing at night (and sometimes in the middle of the night). I have different types of pain. My muscles always feel sore, sort of like I did a really hard workout. I get muscle spasms, too, and they can be so intense that they have torn muscles and broken both superior pubic rami (the small bones in the front of your groin). My back is tight ALL the time, 24/7, but it can go into spasm and there is just no way to get away from it, no position that helps, no massage, nothing. I have to take some kind of gabaergic med to relax my muscles when that happens. Sometimes, it just happens with no warning, but usually something sets it off.
Sure, there’s more, but I actually did not want to spend time complaining. So, enough of that!
My original intent with this post was to discuss how I plan to share the training I did when I was competing. I want to start with the year leading up to qualifying for Olympic Marathon Trials and then go through to when I shifted to ultras. I’ll include workouts and times and races and all those specifics. There isn’t room to put everything in, so I’ll try to pull out representative examples and include the good and the bad. I’ll also try to include some commentary on how it felt to go through such a transformation. Right now I’m thinking about starting out by posting two weeks of training, one from when I started training to qualify for trials, one from when I was at my peak of training and racing the roads, and one from when I had moved into ultramarathons. I might change my mind, but right now that’s what I’m thinking.
Well, time for my nighttime meds and all that ….
For now, Happy Trails!
Sunday, January 17, 2016
There is no simple answer to this question. In part, that is because runners have different strengths and weaknesses. Even so, I do believe that there are some basic answers to this question that apply to any runner trying to qualify for trials … or for Boston or to run a personal best or whatever.
(1) Time. There are no shortcuts and you cannot speed up the amount of time it takes to build the strength, the fitness, the speed, and the racing savvy it takes to reach a high level of performance. My personal opinion is that it takes a solid year of focusing on a single goal to reach it, or to come as close as possible. I believe this applies to any distance. Your body can only adapt at a certain rate. For example, your red blood cells live for about 90 to 120 days. Training in a way that causes your body to produce more red cells and ones that will carry oxygen better takes at least three or four cycles of training. If each cycle is a few months, you are talking about a year just to increase the efficiency of your oxygen transport system. The same rules of physiology apply to all of the other cells in your body.
(2) Completeness of training. Every runner trying to reach a high level of performance needs to train more than just foot plant. You have to train your entire body. You have to train your entire body for that one specific type of performance. You would not bulk up for a body building competition if your goal was a marathon. But, you also have to consider all the areas that will be stressed. That includes everything from muscle strength to stride length to metabolic efficiency. You can just go out and run if you’d like, but it takes very, very, very specific and detailed types of training cycles to improve, and you need to know WHAT needs improving or you’re just “pissing in the wind.”
(3) Caution. The absolute worst mistake you can make is getting yourself injured. You cannot train if you are injured. And, most runners will try to come back from injury too soon and never reach their true potential. It’s hard not to do that, though, because you know your time is limited; you don’t have forever before you’ve lost your prime. Time feels like your enemy when you’re injured. You also need to understand that there is a difference in cardiovascular fitness and musculoskeletal fitness. You increase cardiovascular fitness much more easily and much more rapidly. Also, you have greater feedback mechanisms for cardiovascular fitness – so, the result for many runners is that they “feel” so much more fit and they increase their effort and training load before their muscles, ligaments, tendons, bones, etc. catch up. They end up injured. My coach used to say, “don’t get greedy, just be patient.”
(4) HARD work. Reaching your top, your peak, your best possible level is hard. It takes hard work physically and mentally. You have to push through workouts and fail at them … many times. You have to have races go wrong, but finish them anyway. You have to learn how to put all the pieces together by doing them wrong, trying again, getting it to work better, tinkering, and getting it right. My coach always made me finish workouts. Just because it wasn’t going well was never a reason to stop. I’m not talking about running through a stress fracture or something like that, but just because my workout was going badly, he made me go through anyway. It was humbling. I hated it. I would be in tears sometimes by the time I finished. But, I became comfortable being me in front of my coach. I could be exactly what I was, exactly where I was, in front of my coach. I never had to pretend to be doing better or sandbag so I could pat myself on the back later. I worked so hard in workouts sometimes that I would puke or end up with diarrhea later. I would be exhausted sometimes. Something was always sore. I ran at least 100 miles per week for months on end.
(5) Race. My coach did not tolerate dropping out of races. Learn to race correctly. Learn to race well. If you have to finish a race dragging in because you went out too fast and totally fell apart on the end, you learn a very important lesson. I have dropped from races because of low blood sugars a few times, but only once from stupid racing strategy. If you are going to race, then race. My coach did not believe in “training through a race.” Races are for laying it on the line. You put your best possible effort into any race you run. If you cannot do that, then do not race. Go out and run a tempo run or something instead. Racing is what you are training to do, so never allow a race to be treated as something less important than it is. Not every race will go well, though, and that’s part of the learning curve. It’s hard when a race goes badly, especially when you don’t know why. But, that’s why you have practice – they call it practice for a reason.
(6) Eat well. The harder and longer you’re training, the more food and nutritional supplements you will need. Yes, I have heard many times, if you eat right, you don’t need any supplements. Well, maybe that’s true for the average person, but that is not true for the runner qualifying for Olympic Trials. Period. I added protein shakes and a variety of vitamins and minerals like iron, B vitamins, potassium, magnesium, and vitamin D. I also went for regular medical check-ups with labs. At 5′ 6″, I usually weighed about 110 pounds while training hard and could drop to 106 by the end of a hard season. But, I would easily go up to 115 to 120 on off periods, maybe even more. I sometimes ate as much as 4,000 to 5,000 calories per day in the midst of a hard training phase.
(7) Find inner peace. This sounds so silly, but you have to be okay with the self-centered and isolated life you will live during the time you are training and racing at such a high level. People you know – family and friends – love it when you race well, when you have great rankings, when you’re on the cover of magazines … but, they are rarely supportive of the time and effort that has to go into your training for all of that to happen. They think that you are being selfish, that you are inconveniencing them, that you are overtraining, that you are wasting your time and their time as well. You have to find a way to shut all of that out. I quickly learned that sharing my excitement about getting through 40 and 50 mile runs did not get the same response from my husband as from myself. To him, I had just wasted an entire day that I could have done something with him or when I could have done something else useful. Plus, I had the recovery time over the next couple days when I was dragging, quiet, and moody. So, I figured out that the best way to deal with the problem was to “sneak in my training.” I stopped talking about the quantity and quality of my training with anyone but my coach. I snuck in my long runs by taking a day off during the week and running the entire day while he was at work, then putting in extra time finishing work by getting up early on rest days and getting some things done over the weekend. I learned to downplay the time, effort, and exhaustion. I found a greater sense of peace in my life when I did not have to deal with caustic responses from people about the level of work I put into my training. And, I practiced taking a deep breath, counting to ten, and smiling and just nodding my head when people wanted to tell me how I SHOULD be doing things.
(8) Train, train, train. This will be a post all by itself. I still have all of my logs from my years of training. I rarely ever look at them anymore. With the health problems that took me out, it’s still too hard to look at them. But, I will. I’ll share my training. There was a lot of training, though, so I’ll have to think about how to do that. I’ve let people sit down and look through my training logs. It’s fine; there’s no secret formula except for hard work.
Well, for now, I’ll just let that settle in.
Saturday, January 9, 2016
I am a couple days out from my second pelvic injection of Kenalog, my left sacro-iliac joint this time. I thought that after surviving the pubic symphysis, this one would be a piece of cake. It was not. In fact, it was worse. I don’t know why. I am not even going to try to figure it out. It hurt more, period. Okay.
So, yesterday my blood sugars stayed in a pretty good range and I was all kinds of proud of myself for managing them. Um, that changed in the middle of the night last night. I guess there was a delay before the systemic whammy happened. I woke up in the middle of the might feeling pretty gross, checked my blood sugar … 274. Shit. I took 8 units of insulin and 16 extra units of Lantus. Usually, for a 274 in the middle of the night I would take 2 units extra. I awoke with it still around 150; four more units of insulin and it still went up. Okay, so I tried to go outside to do my joggish, walk, joggish thing and when I got back it was 225. Four more units and onto the elliptical. It took 60 minutes on the elliptical to get it down. I’ve been chasing it all day. If it goes the same as with the pubic symphysis injection, I have 7 to 10 days of this to look forward to. Ugh.
On the positive, my left SI joint is already feeling a little better and the cracking and popping is almost completely limited to the right side of my pelvis now. Alright! Also, Bob is recovering from surgery and getting a little better each day. Our daily lives are still completely disrupted, but we’re rolling with it. I had a list of things I was going to do today, for instance, and I really got almost nothing done. I’ve had an upper back, shoulder, neck spasm on the left side for about a week now. I can get it under control with extra meds, but then I feel over-medicated and I don’t like that. So, I’m trying to find a happy medium and hoping that the steroid injection will help as it becomes spread out through my body as it “leaks” out of the SI joint. Fingers crossed.
I am not teaching this Spring semester. I can’t. I hate that. Oh well. It was a hard decision, but I think it was the right one.
I am hoping that next week, Bob and I can start working on the baby jogger conversion we’ve planned to make me something to help me get out on some trails and stuff without a possible disastrous fall or something. I’m excited about it and I think we have it planned out really well. We have already removed the seat structure, so on to the rest of the conversion. It will move my body forward into the frame so that I am between the back tires (for support and stability); the handle will be cut and flipped forward so that I have a handle and a brake in front of me that is centered about halfway between me and the front tire (which we are thinking should balance things correctly); then, we’ll attach water bottle carriers and such like the ones you get for bikes. I will take pictures as we work on it and post them. If it’s a hit, then great; if it’s a disaster, then you’ll know what NOT to do. I can’t wait to have it workable and to try it out. I’m not imagining that it will attract very many running partners, though. Ah, whatever.
So, that’s pretty much the update for now. Status quo is a good thing sometimes.
Tuesday, December 15, 2015
Well, it was exactly one year ago yesterday that my first sacral fracture happened. The bone marrow edema had already begun, but I was not aware of it and neither was my doctor … because even though I said I thought I had a sacral stress fracture from the CellCept (the only thing that had changed), I was told that, no, that was not possible.
I had run loads of miles on a weekly basis, sometimes 130 or more miles/week for weeks on end over years and years, and I had great bone density (I had just by chance had it checked at an endocrine visit a month or so earlier). The only difference was being put on an immune suppressing drug called mycophenolate mofetil, or CellCept. I had been on the medication for about four weeks when my right sacral ala just “went” without any warning. I went to take a step and it made a crackling sound and I couldn’t walk. That quick, that weird. The fellow in Neurology told me to “take a vacay” from the medicine and see if I started to feel better. I did. One month later, I was starting to feel better and went in for a visit in Neurology. I was put back on the medication and the four person lecture I got on the importance of compliance made me decide not to give up the fellow for telling me to stop the medication – it was obvious that giving up that info would probably be a bad idea for said fellow’s future job opportunities. Three weeks later, almost to the day, my left sacral ala did the same thing. I stopped the medication on my own that time and decided that, okay, if I get kicked out of clinic, whatever, because the treatment I was getting was making me worse, not better. I have not taken it again. But, little did we know that basically my entire pelvis had developed something called bone marrow edema syndrome. I was told that CellCept doesn’t cause that, etc. Within a couple more weeks, both superior pubic rami developed stress fractures as well.
I cannot begin to explain how painful it was to live through four fractures in my pelvis. I cannot begin to explain how frustrating it was to be told nothing was wrong, that I was not in as much pain as I said, that I was a noncompliant patient. Finally, thank goodness I have the best primary care doc in the world, and he ordered a stat MRI of my pelvis. Yup, four healing fractures, bone marrow edema throughout, incomplete emptying of my bladder … I was sent right to a pelvic ortho specialist. I am finally recovering from all of that, but I have to admit that I am still bitter about how I was disbelieved, accused of being a noncompliant patient, and told that I basically just needed to suck it up with the “pain” (well, because I wasn’t really in that much pain you know). I have been on meds to help with the edema and have had my pubic symphisis injected to reduce the inflammation. Next up is probably going to be both SI joints. At the time, though, the front hurt worse and I was having trouble peeing. Next up will be the SI joints. I used to say that the worse thing in the world was nausea and vomiting. I changed my mind. The worse thing in the world is being in pain so bad that you’re puking and can barely see or speak, but are told that you are not in that much pain and are not treated for the pain. Yup, that’s way worse.
So, it has been a year now. I am at least almost back to the baseline disabled before going through a year of pain added to it. My “baseline” with Stiff Person Syndrome is really weird. Most of the time, even walking feels “off” and like I’m unstable; my legs (usually my left leg) can cramp straight or just give out without warning and I will almost fall (or sometimes I will fall); pretty much nothing can touch my abdomen or it will completely spasm and sometimes my back will, too; I had a bout of aseptic meningitis after my last IVIG infusion and now I’m so scared to try it again that I doubt I will (especially when I was left to deal with the pain with no help at all despite going to the ER); I have a startle response to visual field things and it sucks. BUT … I can completely unexpectedly have a day or two or even three days in a row where everything works so much better that I can walk well and even joggish a little. I have had two strings of that since the terrible IVIG infusion. Today was one of those days. I actually jogged a little and did the elliptical. I am having some leg spasms starting back already tonight, though. What the hell. It was so worth it to get outside in beautiful sunny skies. And, for it to happen today was a blessing because of what tomorrow brings.
Well, tomorrow we will arrive at the hospital and check Bob in for surgery by 6:30am. He will be in surgery for pretty much the whole morning. He was just recently diagnosed with prostate cancer. It is fairly aggressive looking based on tests, so in a short six week period we have gone from focusing on my health issues to a rapid rise in his PSA blood test, twelve biopsies, genomic testing, four consultations, and now surgery. I don’t want him to have to go through all of this. We think that we have a good surgeon and a good team on board for follow-up. I hope that I can get through at least the next week or two without some kind of problem with my plethora of health problems. He is afraid of not being able to help me with an overnight low blood sugar or a sudden back spasm that puts me on the floor.
I really do feel like we have had the rug yanked out from underneath us over the past year.
I do not know if I will be fairly out of touch or spending lots of time trolling on the computer to pass time as I sit in the hospital. If you don’t hear from me, though, I apologize ahead of time. Right now, though, I have to put together my bunches of medications to bring with me to the hospital, so send any strength you can spare my way! I’ll need it!
Friday, November 20, 2015
Well, yup, that’s my lesson for today. It applies to life, of course, but it applies to running and all other things as well. I am not very good at excising the bad … no, I like to mull around in the muck, feel bad for myself, second guess things, beat myself up for not ‘seeing it coming,” or just be down and act like a victim. If it wasn’t for my coach when I was still racing, I would not have made it to Olympic Trials; if it wasn’t for my agent, I would not have run the pro road circuit; if it wasn’t for my husband, I would have listened to all the snarky comments, internalized them, and then lost every race I entered. But, those things did not happen. I did run in Olympic Marathon Trials; I did run the road circuit and my profession on my tax return was professional athlete; I did win races and break course records and snag a silver medal at nationals and get top ten world rankings several years.
I would have talked myself into failure on my own. I am still like that now. It takes very little for self-doubt to creep in and slam me in the head. As my husband tells me all the time, nothing I do is ever good enough. He also points out (and this one is very timely today) that no matter what I do and what I decide is the correct action or path, someone is going to disagree, sometimes to the point that they become angry and maybe even enraged. But, I must make my decisions based on my understanding of what being a responsible adult involves. I am not always right. Nobody is. But, I do the hard things that other people turn their backs on out of fear and I always try to protect the underdog. So, once I get over the shock of being lamblasted for doing the adult, responsible, correct thing, I listen to Bob, step back, and think, “yeah, I can go to bed with a clear conscience because I did the right thing, hard as it might have been.” That’s pretty much been the theme of the week this week. It makes dealing with the aftermath of aseptic meningitis tough, it makes dealing with the medication- and disease process-induced anxiety attacks very difficult, it makes it very, very hard to deal with some new, bad, and significant health news.
In a very unusual step for me, I have actually reached out to some people this week for help. WOW! Yeah, I almost never ask anyone for help with anything. I always feel a deep obligation to help others, but I never feel like anyone owes me anything in return, so I would never dream of trying to call in favors – I don’t look at helping people as packing away favors for the future. My grandfather always said that you help people because it’s the right thing to do. But, this week, the bad news piled on top of the bad news, combined with other ridiculousness, and I have had to ask for help from some people. I am really not trying to be cryptic or anything, but some of this involves other people and I do not want to share their problems in such a public format even if their problems have a direct impact on me. I’ll stick to my own stuff to be fair to others.
So, the point of this post is that I have decided that one thing I desperately need to do in my life is cut out the negativity. (1) I need to get rid of people who create problems for me. (2) I need to find a way to shift my thoughts from worrying about health problems to focusing on the here and now (and I need to come up with some good here and now things). I found a show on TV, a new one, called Life in Pieces. I watched it last night and it made me laugh out loud, deep belly laughing like I haven’t experienced in a long while. I need to find more things like that. (3) I also find that aerobic, moderate, but lengthy bouts of exercise help tremendously. I know that there is a chemical basis for it and I suspect that it has something to do with altering the problem with glutamate receptors and GABA deficiency and all that technical stuff that this disease involves which cause me pain and coordination problems. I am going to try to make a jogger assistant thingy sort of like a baby jogger, but less obvious looking and centered better for my own coordination problems … and, I’m going to hope that it can help me get back outside to run. I need to pick out the right person(s) to help me create this thing that I have drafted the plans for, taking into account everything from weight-force to navigability to, well, everything I can think of. I need to find someone who knows both bikes and welding and ergonomics. Yeah, no small measure, but I have some ideas. Meanwhile, I am trying to gain some strength by getting on the treadmill, holding onto the bar with at least one hand, and doing the best I can. It’s defeating most of the time, but I’m trying. I can do the elliptical, but I am still way down on the intensity level that I used to be able to do. The problem, oddly enough is not fitness, but rather it is that I lose the ability to keep my legs coordinated and risk falling. My quads will lock solid with no warning. Well, every now and then I can feel it coming on, but usually it is totally unexpected. My stride length is so short now because of the overall stiffness, even though it doesn’t feel like stiffness. It’s weird; it’s hard to describe. Anyway, I am hoping that creating this assistive device will allow me to get back outside more often and more safely. Fingers crossed! I need to start by making a prototype sort of thingy. Oh well, enough on that!
The good news of late is that I AM NO LONGER THE ONLY DIABETIC TO HAVE RUN AN OLYMPIC TRIALS QUALIFYING MARATHON!!!! Nicole Michmerhuizen won the Indianapolis Marathon on November 7th and finally, finally, finally, after over 16 years, another diabetic runner has done the big deed! I will do everything I can to get out to LA in February – maybe I can have my assistive jogging thingy built by then and actually run something recreationally. I think they still have the regular people’s race that weekend. And, to sweeten the pie even more, I think Sofie Shunk is going to get a qualifier some time in the next year. She ran her first marathon in 2:52 and has not been a big distance runner yet. She has awesome 10K speed and that is a must for a good marathon. In retrospect, I wish I had worked harder on my 10K speed. So, it is just an amazing running environment for me over the past few weeks despite being basically disabled as a runner myself. I ride my bike from time to time so that I get to see the routes I used to run; I have a special seat and it prevents the pain from the bone marrow edema, so I can see my special places! I never realized how important that would be. I’m starting to get over the vanity problem with not being the same runner-me that I used to be. Don’t get me wrong; it still bothers me, but I’m progressing on that front. What I am not progressing on, though, is how badly all of this has affected my ability to work. The unpredictability of muscle spasms/contractions/seizures powerful enough that they have broken bones in my sacrum and pubic rami make work-planning a near impossibility. Add to that the increasing cap for student loads in courses and I just cannot get through the workload. It is a sad reality. From my very first college course, I wanted to be a college professor. I achieved that finally and now this. It’s a roll of the dice sometimes I think.
Well, at least the great news on the running scene with Nicole and Sofie has made me so very happy that I’ve been able to handle some of the other shit that has come my way recently. I have good contacts in the diabetes community, so I hope that some of the problems I am having there can get solved or partially solved or something like that! Anything! I have some pretty great friends, too. Of course, I have some people who apparently hate the shit out of me, but what can you do, right? At least I have a clear conscience and Bob keeps telling me that is the most important thing when it comes to people. It’s funny that my grandfather used to say pretty much the same thing. I am more and more amazed at how smart my grandfather was even though he was a simple Northern Ireland Catholic immigrant with very little education. He knew people, though, and he was a good person. He was a disciplinarian, though, and he once beat the hell out mine and my brother’s bums for diving off the porch of the second story flat into my uncle’s boxwood hedges below. I remember my dad telling me that he bit my grandfather once when he grabbed him by the arm and my grandfather bit him back! He was a character!
Well, I have a little over a month to decide whether I have the guts to try another round of IVIG infusion therapy (it’s kind of like immune system chemotherapy) after the bout with meningitis this last time. The neuro team has all kinds of ideas about how to improve my chances of NOT having that happen again, but wow I cannot even begin to portray the pain involved with that. It was the kind of pain that made me a puking machine. I couldn’t see with even the slightest bit of light. The abdominal seizures were awful, but at least it wasn’t my back this time (the back is always worse). So, I have some time to try to build up my courage to give it a try again. I really don’t have any other options, though, because this is the only thing that has worked to slow things down at least a little. The only other option is a chemotherapy that completely wipes out my original immune system and then a stem cell bone marrow transplant to give me a new immune system. Besides the months I would be hospitalized at Northwestern in Chicago, in isolation, I would have to pay out of pocket … $400,000 out of pocket. So, seeing as I do not have $400K laying around, I guess that won’t be happening. I’m sure that some people would think we could come up with the money but we can’t. It’s funny, you know, Bob grew up with parents with 6th grade educations who worked two and three jobs to make ends meet and he worked his ass off to make something out of himself … and he did, wow, did he ever! And, I came from a family that had come to America penniless, through Ellis Island, and everyone embraced the value of education, pulling the entire next generation up into a solidly middle class status … after starting in the ghetto in Paterson, NJ. I thank God for the example set by my extended family and nothing was ever handed to any of us; we worked our asses off for every bit of where we got, so when someone tells me that I don’t understand their difficulties … oh, yes, yes I do. I think my family is the epitome of the American Dream and so is Bob’s. I often think about my Aunt Cele and I hope that I have made her proud by getting my doctorate. She tried and got within the defense of her dissertation and then was told that she wouldn’t be allowed to do it. Similar situation, slight differences, but I persevered and I just look up and say, “this one was for you, Cele!”
Okay, now that I have waxed philosophical for way too long (avoiding the student emails I need to get to), I will sign off for now, feeling a little better! Sometimes this kind of thing can be cathartic in a way, helping set everything into a more proper perspective.
Friday, November 13, 2015
We all have our ups and downs … it’s kind of what makes life go round, right? In the past few weeks, I’ve gone from suffering from aseptic meningitis from the IVIg treatments and ending up going to the hospital, having my blood sugar drop to 30 (yes, that’s right 30) before my husband could get anyone to do anything for me, to having some days where I felt really up and optimistic, enjoying the weather finally clearing up so we could get some sunlight!
Even today, in a single day, I’ve had that bouncing from one extreme to another. Even though Stiff Person Syndrome is listed (by name) as part of Medicare’s Compassionate Care Act, I have yet to figure out what that means in terms of any benefit whatsoever for me. So, yes, today I went from a decent mood, laughing with my husband as he drove us to the doctor’s appointment, to fighting back tears on the phone while talking to someone from Social Security, trying to figure out what compassionate care was supposed to mean for someone like me, who is now facing losing my job, failing pretty much every treatment effort for my disease, having Duke’s Human Resources forcing us to prove that we’re married so that I can stay on my husband’s insurance policy (which I have been on for almost 30 years already) – oh, and a marriage certificate is not proof that you are married apparently. Do I think we are being singled out? Um, well, yeah, hell yeah. And, I am once again about to be sent to collections for payments that our insurance company is supposed to have paid, but keeps saying they don’t have x, y, or z or that they don’t know why those bills are still outstanding.
You know, though, for the most part, I had been doing pretty well for the past few days. That is part of the weirdness of this disease: my condition from one day to the next is completely unpredictable. I can have one day where I can get out and transplant some crape myrtles toward my neighbor’s yard (something I told her I would do last year at this time, but then was too sick to do so) – I got 4 of the saplings moved yesterday and then my back seized up. I thought I’d be able to get at least one or two more done today, but everything fell apart unexpectedly. At least the dr’s appt. went well, relatively speaking.
I try to keep a positive outlook, to stay upbeat, to see the better side of things … but, yeah, I got choked up on the phone today and had to apologize several times when I couldn’t finish my sentence … these are the times when I wish I had someone else to make those calls for me!
At least a couple weeks ago, I got to go to duke basketball practice and lunch with Coach K and some of the players afterward!
This was actually about 12 hours after getting home from the hospital after the bout with aseptic meningitis and I went anyway … can’t miss practice, the team, and Coach K! I took the time to get a picture of my friend Ellen’s picture in the Duke Hall of Fame, too – something I’d wanted to do for a while but hadn’t.
I am not sure which way things will go any longer; nothing seems to be predictable anymore. I’ll admit that I get those moments when I have a desperate desire to have my life return to the normal I had before, but I try not to let those thoughts stick because they can become so toxic so fast. I know that I need to get myself out of the house more because it is so easy to allow myself to stay isolated and ignore the rest of the world, but it really is not as easy as it sounds: it is hard to plan ahead because things are unpredictable for me, it is hard to plan for how long it will take me to do something, I cannot be certain that I can drive every day, and the list goes on.
Well, I have student work to grade for now, so I better get on that. I have a good group of students this semester!
For those of you out there running, enjoy this weather and train smart!