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Tuesday, June 5, 2012
I’ve been out of action for a month. I’ve been dealing with something called Acute Brachial Plexus Neuritis. It has totally sucked! So, what is this thing? Your brachial plexus is a set of nerve bundles that run from your neck and upper spine, between your shoulder blade and collar bone, through your shoulder, and down your arm and the side of your chest. Neuritis is an inflammation of nerves that usually includes some amount of loss of the myelin sheath that protects the nerve (sort of like the way your skin protects you from all the stuff outside your body). The thinking is that a virus or minor illness starts the whole process which culminates with your immune system attacking the nerve bundles.
This has been the absolute worst health event I have ever, ever dealt with. A hundred times worse than developing diabetes. It has been the worst pain in my life, more than I thought I could have without passing out or something. Well, it was so bad at some points that I was puking and pretty much incoherent. I’ve been back and forth to doctor appts, the ER, etc. My husband couldn’t go to work because I couldn’t take care of myself. He had to learn to give me insulin and how to use my meter (neither one of us realized that he didn’t really know how to do all that until this hit). I ended up on a TON of pain meds and other meds (there’s an interesting side note about one of the meds, neurontin, so in case I forget to mention that someone message me to remind me).
I’ve finally started to recover. The whole thing has been traumatic actually. When they told me that there is about a 10% chance it could recur, I suddenly felt like a PTSD patient. The thought of going through this again struck fear in me, for real! I’m way behind on all kinds of stuff and I’ll begin to catch up on things like the blog in the next couple weeks. I have a race report from Todd to post, but I haven’t been able to get up with my webmaster to get the picture posting thingy fixed because I’ve been out of commission for a month. I have a bunch of website emails that I haven’t answered as well and I’ll start getting to those over the next couple weeks. If you’ve sent me an email and I haven’t answered, I apologize. Others can attest to the fact that I usually reply within a day or two max.
I wanted to explain what this condition is and what all happened because the auto-immune part of it means that, even though it is an uncommon condition, those of us with Type 1 could definitely have this happen. A quick diagnosis can help tremendously.
I woke up on a Wednesday morning at the beginning of May feeling like I had slept funny on my neck. My neck was sore, my upper back felt tight, and the neck pain reached to the tip of the upper crest of my shoulder blade. I had to drive my husband and step-daughter to the airport and by the time I got home, the pain was pretty bad and I took a tramadol. I have a prescription for tramadol because the thyroiditis issue I have can cause muscle and joint pain sometimes and I can’t take non-steroidal anti-inflammatories like ibuprofen. It works on the same cascade that anti-depressants do and so it works very well for the type of pain that thyroiditis can cause. And, it gives you a subtle, but good mood boost. I usually take half of one – I’m not very big. I took a whole one when I got home from the airport. By dinner, I was in really bad pain and called my former training partner who is an ortho doctor now. I ended up looking for some old pain medicine that my husband might have left over from his shoulder surgery over a year ago. Found that and took that. By midnight the pain was so bad I was nauseous and the pain med from my husband’s surgery pushed me over the edge and I was in the bathroom puking.
First thing in the morning I called my primary care doctor’s office and the nurse told me to come in. Okay. Damn, I couldn’t drive. Daddy to the rescue! My parents live about 15 minutes from me now, so my dad came and got me and took me to the doctor. He needed to get his allergy shot anyway and he goes to the same doctor that my husband and I go to.
My primary care doctor stays up-to-date on medical stuff, thank goodness, and he knows my wierd auto-immune problems very well: asthma, T1, thyroiditis, and a few odd events of inflammation between my ribs called costochondritis (last one was years ago thankfully). He immediately knew it was most likely auto-immune, but I was running a low-grade temp, but inflammation can cause that sometimes. He put me on hyrdrocodone for pain (the oxycodone had made me puke but usually people who get sick on one can take the other – he was right); an antibiotic, biaxin, just in case there was some infectious thing going on; and a prednisone taper to get the auto-immune thingy to stop it damnit. Perfect approach actually. Problem was that I completely failed the prednisone taper right from the get-go and the hydrocodone didn’t even touch the level that the pain had reached. The first dose of prednisone and I started to spill huge amounts of ketones and started peeing like crazy. Even keeping my blood sugar normal, I couldn’t get the ketones to clear up at all. We stopped the prednisone. The ketones kept on. Long story short on this point: I lost 8 pounds by the end of that weekend.
As the immune system attack traveled along the brachial plexus, the main focus of the pain traveled as well. Some parts of the process proved to be much less painful, but some were much worse. The worst pain came when everything was inside my shoulder joint, still under my shoulder blade, and beginning down my left arm. I also lost the feeling in my left index finger then and it caused some numbness on the tip of my middle finger and the tip of my thumb. That numbness is still there, by the way. It might be permanent. Oh, and I have muscle weakness in my left tricep, lats, and some of the muscles in my lower arm.
By the time I hit the worst pain, I ended up in the ER. A series of errors and falling through the cracks in the medical and insurance system led us to contact the sports medicine program that followed me when I was running the pro circuit and in the Olympic Development Program. They told us to come straight in, that they would let the front desk know we were on the way, and within an hour of talking to them on the phone, they got me in, diagnosed it (they’ve had a few cases over the years and have one guy right now), laid out a treatment plan (mostly pain management because the window of opportunity for the prednisone taper was gone), and explained to us what was going on. Duke Sports Medicine is full of the greatest people! They are so on the ball!! I love them! I don’t know what I would have done without them. Really.
They put me on some heavy hitting pain meds and added neurontin (gabapentin) to the mix. Technically, neurontin is an epilepsy medicine. It quiets nerve impulses and can help trememdously with controlling nerve pain, which is the worst kind of pain (yes, I can attest to that!). It definitely makes the pain medicine work much better and so not only was my pain controlled better but I was able to cut back some immediately. They put me on an every-two-hour schedule. Your first thought is probably, what did you do for overnight. Well, I set the alarm. It wasn’t bad because before this pain management regimen I wasn’t sleeping because the pain was so bad I had to pace back and forth. With this regimen, I was actually sleeping for the two hours in between the alarms. Wow, sleep helped sooo much! My husband still had to help, though, because I was so out of it when the alarm would go off. Before bed, we started writing out a schedule so that when the alarm went off we’d know what we were supposed to do at that point: check blood sugar, take half this pill and whole that pill, drink half of water bottle with electrolytes, check for ketones, etc.
Oh yes, the interesting thing about the neurontin! After I took the first dose, almost exactly two hours later, I was sitting outside and I started to have spots in front of my eyes, the kind I get sometimes with a low blood sugar – the big bright spots right in the middle of my field of vision. I felt fine, though. I went inside to check my blood sugar anyway: 46. WTF? I treated with dex tabs, etc. Later, after I ate dinner, same thing. I had taken 3 units of Novolog with dinner just like normal and was expecting my bg to go high since my activity level had been so low. Nope. Bad low. Wow. The next day, same thing: 42. Etc, etc. I kept cutting my insulin and ended up realizing that I could take my Lantus and then pretty much eat like a normal person with sometimes no extra insulin at all or maybe one unit. I ate two cheeseburgers, chips, baked beans … one unit, blood sugars: 152, 79 (3 cookies), 75, 99, 94, 82, etc. Another time: eggs, bacon, toast, chocolate cheesecake: no insulin since 5 hours prior, 116, 128, 132, 129, 85 (dex x 1), 87, etc. I could go on. Once the neurontin was increased to twice/day, the highest blood sugar I had was 183 after pizza. I’m down to one/day at this point so the miracle is wearing off. On the down-side, it gave me hypo unawareness to a degree and when I’ve been able to start some jogging, my blood sugar has been hard to keep up. On the upside, though, I have definitely taken advantage of eating things that had been thoroughly excluded from my insulin life! Bread, pizza, cake, cookies, spaghetti, potatoes, bananas …. YUM!
I’m back to doing some jogging/running but slow. I’ve lost some fitness, of course, but it doesn’t feel too far away. I think I’ll get back up to speed pretty quickly as this thing goes away. I’m still in some pain, but the character of it is different at this point. It’s not as intense and diffuse, but it’s still a constant pain and that gets pretty irritating and frustrating at times. There’s no position I can get in to relieve it and it doesn’t respond to icing or massage. It just keeps hurting. Thankfully, it’s much less and it doesn’t feel like a bone pain sensation any longer. I’m still on the heavy duty pain stuff at night, but only at bedtime and 2:00am now. During the day, I’m on just one neurontin and tramadol. I still can’t drive because of the night-time pain meds. Until that goes down to a certain level, no driving. I’ve been feeling stranded, no doubt. My head is clear enough now that I’m getting back to work, so that’s a huge positive!
This whole experience has taught me a big lesson about perspective on life. What have I learned?
Make your house a home. It is so comforting to feel safe and calm in the place that you live. Sights like landscape and birds and animals; sounds; smells; spaces … all of these things gave me a way to get through some of the really tough spots. I want to have a place to grow old that I love. All of us need a home.
Care about your family and friends. Our family and friends helped soooo much, sometimes just by being available to come over, sometimes just calling, a few times getting called in the middle of the night to help out. I could do more to step up to the plate. I now know that it makes a difference. One of our neighbors called the other day (she was one of those who got a late night phone call and came down right away) to check on me and told me that she was compelled to help because we had done so much for her when she had some gall bladder, etc things going on. I took her to appts a couple times when she couldn’t drive or we went to the pharmacy or whatever for her. I never thought we had done anything extraordinary, but it was huge for her, just as those small kinds of things were huge for me.
Figure out what you believe in spiritually. At the risk of sounding melodramatic, I had a lot of time sitting, while in pain, or alone at night because I tried not to wake anyone up, or pacing and trying to take my mind away from the pain … what I figured out was that we don’t live forever and we better find something that we understand and feel okay with on what the end of life is all about. I think what drove me to think about things like that was feeling like a hospice patient or something with all the pain meds and the constant pain and the seclusion that it surrounds you with.
Ask for help when you need it. People cannot read your mind. If you don’t say very clearly that you need help and what you need help with, they don’t know. They are not being inattentive and it’s not that they don’t care. We have to tell people what we need and not try to make them guess or try to manipulate them into doing what we want/need. Just state it … very clearly: can you get up with me right now (middle of the night) because I’m confused and hurting and I need someone to make sure I’m taking the right insulin and I need some emotional support right now. can you sit with me even though I don’t really have anything to talk about, I just need some company.
Stand up for yourself. There were some big flub-ups that delayed me getting the appropriate medical care. Even though it may not have changed the course of this illness, I certainly would have had better pain management sooner and would not have had to experience pain so intense that it made me puke, pee on myself, and collapse on the floor. I don’t necessarily know what I could have done to make things go differently but I’m already pursuing this and talking to my doctor and others to trouble shoot so this kind of mess does not happen again. We have already made a plan for the possibility of a recurrence. I would go into the hospital for a couple days of managed care of the prednisone taper so that I could get through it safely. If you can’t get things fixed for the current problem, at least pursue potential future remedies and make people aware that things didn’t go well and that you won’t tolerate that again. Make them come up with a different scenario, like our plan for a potential recurrence. Make them verbalize that they understand what went wrong: the ER resident getting so set on pursuing the possibility that I had a disected aorta (really) that when the CT showed my aorta to be fine, she ejected me from the ER before the ortho fellow could do the consult that probably would have diagnosed this that night. My primary care doctor’s office refusing to do anything more for pain management – if they couldn’t do anything better, they should have referred me to a specialist instead of having a nurse call and say that the pain prescription the doctor wrote is the best he can do. WTF? So, are you saying I should just head back to the ER now? WTF?? Stand up for yourself and if you can’t do it effectively right then, go back and make it clear where people failed and make them state what they should/could do differently.
Get your priorities figured out. What are the important things in your life? What are the things that seem important but are really just a bunch of crap things that you place importance on because of what other people say or do if you blow those things off? The world won’t crash to an end because I don’t get an article written on time or because I wasn’t able to attend a tv interview. The world doesn’t revolve around me. So, what are the important things? Where in this world can I make a difference or have an impact? Can I shape someone’s life in a positive way?
Be important. What a waste to take up space in this world and do nothing of substance for anyone or anything. Importance is a matter of perspective of course but, damn, do something that makes a difference! Get outside yourself and think about the bigger picture. Leave a legacy even if nobody will know that it’s your legacy … leave a mark on the world.
Do something you love. You don’t have to justify it to anyone. If it is your pleasure, make it fit into your life consistently. I love to run, so I run. I don’t have to explain to anyone why I do it. I also love nature. I create gardens around the yard and I look at nature photography and I watch nature shows. I love watching wildlife so I find a way to do that. It brings me joy and peace, so I make it part of my life.
I think those are the main things that I came up with. I’m on the mend and I’m getting some slow miles under my feet now. I’ll get caught up on the back log soon. Thanks for all the support I’ve gotten from some of you whom I’ve never even met in person! It has meant a lot!