I do not know what to do about my sleep problem. I mean, obviously I am stuck waiting out the steroids, which may be a while, because I still have a week left on the taper. However, I hopeful that it will get better before then, that my body is still working on the large doses of steroids that I took Wednesday-Sunday. I keep thinking, "Tonight will be the night--I will sleep a full night again." Nope, not yet. I went to bed around 10:00, woke up once and went back to sleep (yay!), and then woke up again at 4:00. I have been up since 4:00 am. Darn. I gave up around 5:30 and came downstairs. I have reports to write, so I will get started early and maybe rest later.
So, the eye doctor. I saw Dr. Mindy yesterday for a record-breaking five-hour appointment. Obviously some of that was wait time, but I did have several tests, as well as photography. And she called in a neuro-ophthalmologist to look at me.
You will not believe what these geniuses concluded: My vision problems are probably related to the steroids. Yeah. No kidding. Take steroids, vision goes blurry for a week. Gets better. Four months later, take steroids, vision goes blurry. Believe it or not, I had made the steroid-vision connection on my own.
I might have 6th nerve palsy causing a bit of strabismus, or I might have increased intracranial pressure (although my eye pressure are okay), but most likely problem seemed to be with blood sugar.
That was what I thought the last time I did steroids! I remember that I asked my dad about it, and he said that I had not been on steroids long enough for them to affect my blood sugar that much. Dr. Mindy said that with the high doses I have been on, it is possible. And that they are not suggesting my blood sugar is 400 (which is apparently an insanely high number), but that it is elevated enough to cause osmosis in my eyes, retaining water in the lenses.
Now, this diagnosis is not certain at all. The neuro-ophtho, Dr. Sammy, suggested that I have a test called a1c, which he said can estimate your highest blood glucose level in the past three months based on the amount of glucose tagged to your hemoglobin. Something like that. I am hoping to get the test today.
About five minutes after I arrived home, my VT, Debbie, arrived. It turned out that she had had gestational diabetes with all of her pregnancies, seriously enough that she was injecting insulin during the last one. So she was able to share a lot of helpful information about blood glucose, insulin, and nutrition.
When she described the crash that happens when the glucose level rises quickly and the body overproduces insulin, it sounded familiar. That happens every time I eat candy or dried mango or other sugary stuff. I noticed that my senior year of college, so about six years ago. That kind of fatigue was not as severe as what I am experiencing now, and it did not come along with dizziness, shakiness, or feeling SICK. But with steroids to "help" things along, who knows?
I am looking forward to getting that a1c test and finding out if my bloody sugar has spiked at some point recently.
Dr. Sammy and I discussed my future with steroids. He pointed out that they are a "double-edged sword," both helping and hurting. Certainly seems that way. I was concerned that my vision is worse this time than the last time I did steroids, despite taking half the dose. He said that I can still take steroids in the future, but I might need monitoring. Dr. Mindy said that typically people are monitored by their PCP during a course of steroids. Blood pressure, etc. Grr. I am not monitored except by myself!
If I find that my blood sugar has been high, I may need to do that finger stick thing and monitor it, at least when I am on steroids. And I might need to watch my nutrition. As Debbie pointed out, that will probably help anyway. She was teaching me about eating complex vs. simple carbs. And about eating carbs together with protein and fat to keep the glucose level more even. And smaller meals/snacks. And being extra careful in the morning. Well, I was careful this morning. I saw a donut... no. I saw bread... no. I saw bagels... no. I saw apples... no. I did NOT feel like cooking eggs at 5:30 in the morning. I found a frozen egg and cheese biscuit... winner!
I am glad that I got up. There is no point lying in bed when I am not tired enough to sleep. It seems like my body wants to go infant style: Sleep five hours at night, up for a few, down for a morning nap, up for a while, back down, get cranky... Pain was kind of keep me up for a while--butt pain, which is hilarious. I mean, it is horribly painful, but the concept of butt pain is funny. Anyway, that burning/freezing nerve pain in my sciatic nerves (which are basically on the sides of your butt) and some pins and needles on my butt kept me up for a while. Then I realized that I was thinking about stuff because I was just not tired enough to sleep. Blah. I think I am going to begin compiling a list of the pros and cons from this round of steroids.
Oh, it is raining! I can hear it. How nice. :)
Oh, it is raining! I can hear it. How nice. :)
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