However, during all of that drama I also became extremely weak in my lower back and legs. At first it was thought that this was due to being hypothyroid, as that is one of the most common side effects - muscle weakness. It has not improved with the treatment and medicine I have been using for the thyroid cancer, and so earlier this year my endocrinologist said that he didn't think it was related to that anymore, and said I should go see my regular doctor to find out what was going on. So I have been and it has not been an easy road by any means.
I can't walk more than a few yards before my leg muscles and back muscles almost give out on me. It is as if they get so tight they use up all their energy very quickly and then become extremely fatigued to the point where if I don't sit down to rest they will give out on me entirely and I'll fall over. Thankfully that hasn't happened yet, and I'd kind of like to keep it that way. It's so discouraging. So discouraging. I can't walk around a store, or a theater. I can't go to a park unless there is a bench somewhere right next to my car. Forget walking any place like a mall or zoo. It is all I can do to get down three flights of stairs and into my car before I have to sit down and try to relax the muscles. It does hurt when I rest, but only because it feels like my back and leg muscles are so seized up that they aren't able to relax properly. It takes a long time before they do, and then my back and legs hurt so bad I can hardly walk or stand for even just a few seconds. Those are my really bad days.
I have seen a neurologist who took seven weeks to even order a lumbar spine MRI (and that was after I had called four times, which is odd in and of itself since I don't do that. I give the doctors the time they need to figure things out, but this was ridiculous). I had an EMG (electromyography test) done where they stick needles into your muscles to see if they are working properly, and they send shocks to your muscles to see if there are problems. I also had a lumbar spine MRI. Both tests, the doctor's nurse said, were normal, "so that's good", she said. No. No it's not. It shows nothing. It tells us nothing. I asked what I needed to do at this point and she hemmed and hawed about this or that and then said I should "slowly increase my physical activity". It became apparent to me right then and there that this doctor had no idea what was going on with me, and didn't want to bother to figure it out. I went back to my primary doctor with tears in my eyes begging her to help. She sent me to another neurologist who she thought would be much better.
I went to the new neurologist and liked him right away. He was extremely thorough, asking me all sorts of questions that the other guy never even touched on. He even had me walk around until my muscles got weak so he could see what was going on. He scheduled me for two more MRI's (the cervical and thoracic spine MRI's) as well as a more complete EMG test, and a plethora of blood tests that I had never even heard of before. That day I had the blood tests done (one of which I had to sit still for two hours before they could even draw the blood) and went home to rest. A few days later I was back in his office for the more thorough EMG test, which left bruises on my arms and legs, but at least he has some data to look at. I won't know the results of that or the blood tests for a little while yet.
On Friday I went to have two MRI's done; one for my cervical spine, and one for my middle spine (also called the thoracic spine). These were quite difficult because I had to be still for more than an hour, lying flat on my back with hardly any support while lying in a huge machine that could seriously send me into panic attacks if I really thought about it. For those of you fortunate enough to not have had an MRI on the upper part of your body, it can be pretty scary. I went to an open MRI machine, so it basically looks like a big metal sandwich, and I was the meat that went into the middle. This was the second time I had a test at that facility within three weeks (the previous test was for a lumbar spine MRI). The first time I almost scared myself silly by creating "what if's" in my mind. What if the power goes out and I'm stuck in here? What if the machine breaks and collapses on me and I'm squished like a bug? What if there is an electrical problem and I'm fried like an egg? What if indeed.
I always have to close my eyes and sing songs in my head to calm me down and comfort me. My standard, fall-back song is one I learned as a child in church called "I Am a Child of God". It's sweet, relaxing, and connects me to my Heavenly Father, who I rely on greatly, especially so in those situations. I don't like small spaces. I literally have nightmares of getting stuck in small spaces and not being able to get out, like a water tube ride at a water slide park, or a deep dark cave where I have been exploring but the ceiling gets smaller and smaller and I realize I am running out of room (that one actually happened. A story for another time, perhaps). After having a PET/CT scan a few months ago I pretty much know what it would be like to be buried alive, or placed inside a torpedo tube on a submarine with the lid closed. Thanks, Sam, for that new nightmare of a thought.
Thinking about all these scary situations, and trying to calm myself down is simply exhausting. I think I hold up pretty well for the duration of the test, then afterward, in the safety of my own car, I let all my emotions take over, which usually results in a whole lot of tears. Even though all the tests I have are extremely stressful and scary, I realize that I can get through them, and I do get through them, though I firmly believe it is more God helping me than anything I'm doing. Sometimes God takes away the trials and heartaches, and sometimes He just makes us stronger to be able to endure it. Right now I feel He is making the latter one possible for me.
Saturday night, however, I had a breakdown. See, after I have a test done I ask for a copy of it. Normally they give me a copy of it right away, which I'm realizing now is a very bad thing for me. I rush home, put the CD in my computer, and immediately try to decipher all the black and white spots on the images. I have no former training or studying of any kind in the health field, so I really have no idea of what the images mean. I try to compare them with other images I find online, but that only makes things worse. As a result, I become extremely anxious, worried, and fearful of what the results will say (or won't say) and when they will possibly get to my home. I can spend (and have spent) hours upon hours looking at the images, trying to decipher them, and then looking up all sorts of health related issues that could possibly be what I have. I rarely find any answers though, and then I begin to worry.
I go back to see the neurologist on the 20th of September where he will go over all the tests and the results with me. That's a long ways away until I find out what the results are, and that's where the unexpected discouragement comes from. I am on the cancel list so if anyone cancels their appointment between now and then I might be able to get in sooner, but I don't know if that will even happen. The breakdown I had on Saturday was for my single biggest fear with all these tests:
What if everything comes back as normal and they can't find anything wrong?
This causes me great concern. Something is wrong. Something is definitely wrong and I would rather not have to go to another doctor and do another round of tests until someone can tell me what is going on. I broke down in tears and cried while my husband rubbed my legs. I told him all my fears. I told him how I had tried so hard to be so strong, how I went and did all the tests with no questions asked, how I continued to try to live like a normal person even though it is incredibly difficult for me, and how I have been persistent in trying to figure out what was going on. But I was so worried that the doctor would tell me that all my tests came back as normal and they couldn't find anything wrong. What was I going to do then? He comforted me and calmed me and said we were just going to have to wait until we went in for the results and pray that this doctor can find out what's wrong.
That night, as we got ready for bed, my husband said our nightly prayer:
"Please bless Crystal so that she won't be normal...uh, um so that her tests won't be normal"
I love that man. I love that man. I love that man. :) I'm still hanging on, but the 20th can't seem to get here soon enough.
1 comment:
Oh, Crystal, I am so sorry that you have been going through so many trials. I wish I could tell you what was wrong so you can get better.
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