Wednesday, September 30, 2009

Crazy Walks Back In

Crazy walked back into the Siminski household. Well, crazy has been in here for quite some time. If you look back on my posts the past two months or so (actually, this entire meningioma journey!) you'll notice three distinct themes: crying, pain and anxiety.

Turns out I WASN'T supposed to be weeping uncontrollably every day and having anxiety attacks. I didn't know that's what they were at the time.

So......after a horrible flight to South Carolina where I met my mom with sobs, I continued crying the entire trip. It was bad, it was scary. I couldn't do anything. I couldn't eat. I was sleeping all the time. Everything made me cry. It scared me and my mom. So bad that on the Monday I was in S.C., my mom had to call Kevin. He called the doctors. Turns out I had a very, very bad emotional and physical side effect of Keppra XR, which had been prescribed (for various reasons) just about a month before. Well, the timing of the South Carolina trip coincided with the drug fully loaded into my system. I guess it happens to about 1 in 5 patients on this drug. I think the generic keppra was doing the exact same thing, but just not quite to the dramatic extent that the extended release was. (Hence, my anxiety - although I didn't know that it was that - during the entire radiation treatment.)

It was so bad, that my mom had to escort me back to Indiana on Tuesday (my original departure date). She was able to get on the same flight as me, thank goodness. Within 72 hours, my mood, appetite, etc. were dramatically better. But it wasn't without yet another ER trip to get fluids in me because the withdrawal from the drug was rough, rough, rough. Geez! There was basically no taper. One night I had my usual dose. The next night half dose. Then I was done with it. I had to be. It was bad news.

Now, the same time I started XR, I also started Lyrica for some slight nerve pain I had been having. Wouldn't you know it, about the same time I went through the Keppra Crazies, I started developing debilitating muscle pain. I thought I just pulled a muscle and was tense from just the sheer physical and emotional toll I had been through the last week. The pain didn't go away with time, muscle relaxers or some pain meds. That made me suspicious....

I'm now tapering to see if I'm developing an extremely RARE side effect of Lyrica. It's exactly the same feeling I had when I was on Remicade and Humira (which both gave me the lovely side effect of drug-induced lupus).

This is potentially the SIXTH pharmaceutical drug that has given me such bad side effects, I've had to stop it.

Ah, the fun never ends. If I can just get all these medication issues fixed, I will be one happy camper. But seriously, the difference (just ask Kevin) between me the last 6 months and the me now is like night and day.

PS: Understandably I have postponed the trip to Boston to see the endocrinologists until the beginning of 2010. I've got other stuff to worry about!

Wednesday, September 9, 2009

Ups and Downs

I didn't think this was how recovery was going to be at all. What is so frustrating is that this weekend, I felt better than I had in months. Over the past few days, it's all gone down hill, unfortunately.

I've been doing research on thyroid issues and I'm pretty sure that I know what's going on with me. The good news is that I have an appointment out in Boston at Mass General with one of their endocrinologists since all the ones in central Indiana are completely out of their league with a patient like me. She's worked with Dr. Thornton to help other meningioma patients in the past, and I am hopeful that we can start to untangle a lot of stuff. I am convinced that either my thyroid/pituitary/and subsequent hormone imbalance are all related to the atypical meningioma, the Crohn's and the ankylosing spondilitis. Crazy, but I will explain more in a later post. Yes, I know that I am a difficult patient, but in preparing for this appointment (late sept) I've already uncovered a number of things that SHOULD have raised flags a long time ago.

I'm also just generally uncomfortable sleeping. My screws are sore, which makes me lay on my left side more. That has gotten sore, too. And 3 out of 4 markers from the radiation are still quite sore, even more so after radiation is done.

My new acupuncturist is really worried about the amount of energy that I have. And Jude is worried that I haven't put on any weight. It's not that I don't want to eat, it's that I get hungry and then can't eat a bunch. Or I make something, and it's taken so much energy, that I'm then not hungry enough to eat a lot.

I also think I had an anxiety/panic attack after a lunch with an old family friend today. Unfortunately, the place we went to was far too loud (for both of us), so there was waaay too much stimuli. Combined with the headache that I already had, I crumbled on the way home, and then took a 2 hour nap. The one thing she kept repeating to me is to take it one day at a time. But as I sit here typing through tears, it's hard to think that way.

Okay, there is a silver lining to all my doom and gloom today. I'm getting a second opinion tomorrow from another neurologist to see if we can't do something with these issues I've mentioned throughout the post (plus another long list of symptoms).

But the best news is that after the neuro appoint, I'm heading down to South Carolina tomorrow to spend 5 quiet, relaxing days with my mom. I'm even going to meet another meningioma patient - who just happens to live down the street from her. I think all this will help me out. I just want to dip my feet in the sand and the surf, and I think that will help my soul.