Last spring I wrote about how I'd been feeling unwell, about how I had my gallbladder removed, and about how I'd hoped that that had taken care of most of the problem. I wrote in May about taking more time to rest, and about feeling better. And for a while that seemed true. I wanted it to be true. I wanted with every ounce of my being to be healthy again.
But then June came. My young helper left to go overseas for the summer. I was supposed to be all healed up by June anyway. And the very first week I was slammed. The girls had swimming lessons daily, and a dentist appointment, and a doctors appointment, and I got the phone call to tell me that Naomi's kidneys were failing. And I suddenly felt very, very weak again. When I was offered the management position, it seemed the worst thing for me, and yet the best. In a way it was invigorating…for awhile anyway.
I haven't written much about my exhaustion and weakness because I don't want to sound like a whiner. I don't want to pander after pity. And mostly, I don't want people to think I'm crazy. I don't want them to talk to me about how I must be depressed (which I'm not), or just plain overwhelmed (not that either). I don't want them to tell me I haven't been spending enough time reading my Bible (while this may be true, I highly doubt it's the cause of my weakness). And I find it even more exhausting having to explain myself over and over and then defend myself from well-meaning, but unhelpful advice. I decided not to say anything very publicly unless I had a diagnosis to announce.
I wrote in June and July about my emotional struggles with Naomi's kidney failure. I wrote about the challenges and successes of managing a mobile home park. I posted some pictures, and preserved a few memories, but mostly I didn't write. I didn't write because I didn't feel inspired. I felt exhausted. I didn't feel creative, or lively, or funny, or authentic. And I didn't suppose people would like to open up my blog and read "Man, I'm tired." Day after day.
But I want to write again, and I want to be authentic. And I can't stand going any longer telling people I'm fine because I figure it will be too much work to explain my weird symptoms to them. I want to put it out there now, and then feel like I can move on and write about other things, or go to church, or go to family gatherings and not have to explain myself. So here it is.
I don't regret having my gallbladder removed. I don't miss it one bit and it did take care of some of the abdominal area issues I was having. I think it was a part of the problem, but probably a very small part in the end. When I go back and read again my account of When Mama Goes Down about my first little break-down in March. I realize that the fatigue and weakness that paralyzed me in March, came back in full strength about September. And then it got much worse.
The chest pains came back, then shortness of breath to the point that my breathing muscles would ache some days from straining to get enough breath. Inhalers didn't help at all. I wondered if I was breathing well while I slept, because, though I slept soundly, I woke feeling horribly achy, stiff, and tired each morning. My arms began to feel extremely heavy, like they were carrying weights. It was hard to lift my hands long enough to brush my hair, or wash dishes, or even keep them on the steering wheel to drive. It was hard to make it to the top of the stairs. And then, the most scary symptom yet, my neck began to fatigue very rapidly when I drove. After two to three minutes of driving my neck would suddenly give out on me and I would find myself trying to drive with my head leaning back on the headrest and my arms lying on my lap, one finger on the bottom of the steering wheel.
That was when I told myself, "This is nuts. People don't just lose the ability to hold their arms up, or walk up a single flight of stairs, or hold their own head up long enough to drive to the store, no matter how tired they are, or overwhelmed. This is clearly very abnormal. Somebody has got to be able to find the cause for this."
So I went back to my family doctor, who had already sent me to a cardiologist, and a hematologist, and a surgeon, and for two CT scans, and an ultrasound, and a ridiculous amount of blood tests, and who was ready at a moment's notice to prescribe antidepressants, and I begged for another referral, this time to a neurologist.
Dr. N. took me seriously and found signs of increased fatiguability in my shoulders and thighs--I wasn't able to hold my arms up against his push for more than a few seconds, or hold my leg up against gravity very long at all. He brought me back the next day for an electrical test called an EMG to check on my muscles and nerves. My nerves seemed fine, and my muscles seemed fine. Then he checked something that I didn't know existed: my neuromuscular junction. He did a test called a repetitive nerve stimulation, which showed that my muscles only responded well to the first few nerve stimulations, and then the response rapidly dropped and did not improve. This "decrement on RNS" is very close to diagnostic for a neuromuscular disease called Myasthenia Gravis.
Myasthenia Gravis is an autoimmune disease that attacks the neuromuscular junctions in many muscles but it has a preference for neck, shoulder, thigh, and breathing muscles--the exact muscles I am experiencing extreme weakness in. It classically attacks young females around my age. It can be exacerbated by overactivity and emotional stress. At this point it is a very probable diagnosis. Yet, two blood tests failed to show any of the two types of antibodies commonly associated with MG. About 10% of MG patients fail to show either antibody, these MG patients are termed "double seronegative." So it certainly isn't impossible to have MG without detectable antibodies, but it makes the diagnosis more tricky. My neurologist is not comfortable with treating me until the diagnosis is firm.
I will be heading to the only neuromuscular specialist in the midwest who could see me before April on January 17th. It is a five hour drive from home, but as my condition is getting worse, I don't think it is safe to wait until April. He will be able to perform a more specialized nerve test called a single-fiber EMG, which can definitively diagnosis Myasthenia Gravis, whether or not any antibodies are found in the blood work.
At this point, I have a hard time imagining he won't diagnose me with MG. If he doesn't I might just have to crawl in a hole and die for lack of better options. If he does diagnose me, while the disease can be very grave, it often responds well to treatments, and would actually be the first hope I've had in a long time. Medications can suppress the immune system destruction and improve the function of the neuromuscular junction. Often a surgery is done to remove the thymus gland, which lies in the center of the chest and is supposed to shrivel away to nothing by middle adulthood, but often becomes large and overactive in people with MG. It lies in exactly the spot that I have been complaining about chest pains for 9 months now, and may possibly be the root of my problems. Many people go into remission from MG several years after having their thymus glad removed.
If I am diagnosed, and can begin getting treatment, I may soon be feeling much better. If I am not diagnosed, I'm not sure what I'll do. At any rate, I am now dependent on a thick u-shaped neck pillow to hold my head up for me when I drive, and sometimes when I sit at my computer, or sit down to watch a movie with Matt. My head feels so, so heavy all the time, and my neck feels sore and fatigued and longs for relief. I finally ordered myself a neck brace this week, just so I can wear it around the house and get some relief. It may get to the point where I need to lean on a neck pillow or wear a neck brace in church, or at the store, or with friends, which is part of the reason why I'm writing this blog. I want to be able to wear it if I need it and not have people asking me if I was in a car accident or wondering if I'm just out to get attention.
I believe I have Myasthenia Gravis. I am growing increasingly weak. I can push myself to get work done if I really need to, but it exhausts me for days to come. I am not lazy. I do not like not being able to work, but I just can't right now. My house is messy because holding my arms up long enough to wash dishes, or vacuum, or carry laundry, or cook meals is very difficult right now. Last week I couldn't hold the jar of spaghetti sauce over the pot long enough to scrape it out with a rubber spatula. Having both my arms elevated at that level for more than a few seconds caused me breathing problems, and my arms just dropped. I had to call Matt in to dump the sauce in the pot for me and stir it, while I put my head down on the table and rested. I am not imagining or creating this situation. I am not exaggerating or looking for attention. A good nights rest or a few days away will not cure it. Whatever the diagnosis, I am in need of real understanding, real care, and real treatment.
So there it is. That's my story for 2013. I am hoping that 2014 includes a diagnosis and some measurable improvement. Thanks for listening to my story. If you seem me wearing my new neck brace, or leaning on a u-shaped pillow, just smile and let me know you care, or that you're praying for me. And now that that's out there I hope to be able to blog about much more exciting things: like the fact that I actually caved and bought my children a living creature for Christmas. Hannah nearly fainted. I'd love to tell you about it sometime. Maybe next time. But for tonight I need to rest.