I mentioned before that my vision had gotten worse. Well, within hours of leaving my infusion I was no longer able to see and had to patch my eye. And then it wouldn't stay shut so I had to tape it shut and patch it. My boss made me contact Vanderbilt about the change. I suspected it was that my prism is too strong now that I have reduced inflammation but he thought I should have a doctor make that decision (I'm really good at thinking for the doctors). So I explained everything in an email and sent it off and went on with my day. I learned really quickly how to drive with one eye; made the most stressful trip in Walmart for 3 items I had to have to bake a cake for the next day (no confidence, scared of what I looked like, blind on one side and having to walk with my left arm out to the side to keep from bumping into stuff. Man, peripheral vision is important); and baked the cake. I decided to take the patch off when we went to walk since I didn't need to see super well. I took off the tape and patch and was stunned to realize my vision had gotten significantly worse. There was no way I could use my left eye. It hadn't been more than 4 or 5 hours and I went from really blurry to can't make out anything. I couldn't handle it so I quickly retaped and patched my eye. If it is taped closed I can't see what I can't see and we headed out to walk. Right when we got parked, I got an email from Vandy. He said it could be any number of things, including what I had mentioned but the only way to know is to see him in clinic (which means a day off work and finding transportation). Steven and I talked and decided to ask about the risk of any permanent damage in the next 2 weeks. I'm not going to risk permanent vision loss but I don't want to run to Nashville if I don't have to, either.
Thursday night I was wide awake until 4:30am...hello steroids! I ended up with 2 hours of sleep. I had a super crazy day at work and literally flew through it all. I was wound up tighter than a banjo string!! But I felt SO GOOD! For the first time since March, I didn't wear my glasses. Since my bad eye is patched, I put one contact in and even added a tiny bit of mascara. Friday was a really really good day from every aspect. I haven't felt good in months. We even walked on our off day and added almost 1/2 a mile. When we got home I went straight to the shower and when I dried my eyes and opened them I realized I CAN SEE!
I kept looking around and there was only 1 image! It honestly took me a few minutes to register what I was seeing. The eye still needs correction (that's a different kind of blur..it's hard to describe but my TED blurry is different from my "you need glasses blurry") but HOLY COW I'LL TAKE IT!
Of course, I ran downstairs and excitedly told Steven the good news! I'm breathless with excitement and run back upstairs, grab my phone to text my people, remember I've been meaning to look in my mouth, hit the flashlight and there it was. Thrush. Talk about a buzz kill. My asthma inhaler can cause thrush so I am super vigilant about brushing my teeth after every dose. I suppose the steroids are tougher on my immune system than my toothbrush and Saturday morning I was at my PCP getting mouthwash and pills.
I didn't know this doctor but I think this all happened for a reason. She is the only person to say anything about me being at a high risk of developing steroid induced diabetes. She checked my blood sugar (it was 90 fasting in July and it was 114 fasting yesterday) and we talked about monitoring.
I can't develop diabetes. I refuse. I am going to fight this tooth and nail. If it happens anyways, well it won't be because I didn't try. I have cleaned out the cabinets, grocery shopped and prepped. I am contacting my endocrinologist office to see if they have dietary counseling available so I can be sure that I am doing what is best for all of my complicated medical issues. As of this morning, I have lost 21 pounds since February but sugar and carbs are my language and those are the very things that are the worst for me.
So you guys might want to light some candles and pray for my people....steroids and diet changes are happening and I'm really hoping we all make it through. I have evidence that the treatments are working in a drastic way and now I'm going to act drastically to combat the ill effects. Friday I felt like I couldn't win for losing; that I would love for just one time something to improve without something else falling apart. But that's not how Anne works. My body reminds me of this day after day. Sometimes, drastic is the only response.
Thursday night I was wide awake until 4:30am...hello steroids! I ended up with 2 hours of sleep. I had a super crazy day at work and literally flew through it all. I was wound up tighter than a banjo string!! But I felt SO GOOD! For the first time since March, I didn't wear my glasses. Since my bad eye is patched, I put one contact in and even added a tiny bit of mascara. Friday was a really really good day from every aspect. I haven't felt good in months. We even walked on our off day and added almost 1/2 a mile. When we got home I went straight to the shower and when I dried my eyes and opened them I realized I CAN SEE!
I kept looking around and there was only 1 image! It honestly took me a few minutes to register what I was seeing. The eye still needs correction (that's a different kind of blur..it's hard to describe but my TED blurry is different from my "you need glasses blurry") but HOLY COW I'LL TAKE IT!
Of course, I ran downstairs and excitedly told Steven the good news! I'm breathless with excitement and run back upstairs, grab my phone to text my people, remember I've been meaning to look in my mouth, hit the flashlight and there it was. Thrush. Talk about a buzz kill. My asthma inhaler can cause thrush so I am super vigilant about brushing my teeth after every dose. I suppose the steroids are tougher on my immune system than my toothbrush and Saturday morning I was at my PCP getting mouthwash and pills.
I didn't know this doctor but I think this all happened for a reason. She is the only person to say anything about me being at a high risk of developing steroid induced diabetes. She checked my blood sugar (it was 90 fasting in July and it was 114 fasting yesterday) and we talked about monitoring.
I can't develop diabetes. I refuse. I am going to fight this tooth and nail. If it happens anyways, well it won't be because I didn't try. I have cleaned out the cabinets, grocery shopped and prepped. I am contacting my endocrinologist office to see if they have dietary counseling available so I can be sure that I am doing what is best for all of my complicated medical issues. As of this morning, I have lost 21 pounds since February but sugar and carbs are my language and those are the very things that are the worst for me.
So you guys might want to light some candles and pray for my people....steroids and diet changes are happening and I'm really hoping we all make it through. I have evidence that the treatments are working in a drastic way and now I'm going to act drastically to combat the ill effects. Friday I felt like I couldn't win for losing; that I would love for just one time something to improve without something else falling apart. But that's not how Anne works. My body reminds me of this day after day. Sometimes, drastic is the only response.
dras·tic
adjective
- likely to have a strong or far-reaching effect; radical and extreme
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