Sarah Blake LaRose (3kitties) wrote,
Sarah Blake LaRose

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an update for the public entries

I've written several protected entries lately--primarily because I've been sick and generally having a hard time and just feeling vulnerable. However, I am also aware that people read my public entries who care--some are friends who don't have LJ accounts and some are just friendly people I don't know yet. In the interest of keeping you informed, the high points are behind the cut.

I called yesterday to refill my meds at the pharmacy and was told that my Pulmicort and Topamax are no longer covered--not by Medicare OR Medicaid. This has huge repercussions: no seizure control, no migraine control, no mood stability, and no asthma control (which means extremely severe respiratory infections). I had my internist paged after hours and Alexis talked to her when she called the house. She's calling the pharmacy (I don't know when), and I hope this will get resolved tomorrow. I have ONE DAY left of my Topamax. Then I'm off cold turkey. Topamax has played a crucial role in my ability to go back to school successfully. I am afraid I will sink without it. It's pretty much a last resort med for me due to my need to keep my weight down among other concerns. For migraine control, there are no other options that are successful for me. I have tried many others.

One of the things I've noticed since my nose surgery is that I've had fewer migraines and fewer seizures (the seizures had never been totally controlled, even with Topamax). Also, throughout all the stuff with the infections, I've been able to maintain very good emotional control--surprising even considering the effect of the Topamax. So I'm wondering if all the previous blockages in my sinuses were messing around with my head somehow. The doctor removed a lot of polyps from up near my eyes, and I noticed a tremendous sense of relief in my head in early May. I remember saying that I must have been in pain for a long time and never known it. I wonder how long I was hurting, how much that pain contributed to seizures and poor emotional control, etc. The only way to know would be to lower the Topamax... What I do know is that 125 mg vs. 100 mg of Topamax made no difference in the state of my brain over a month. Getting rid of the nose infection made a huge difference. I am on 100 mg Topamax now and am 100 times more alert than I have been in the past two months. So what is all of this pointing to? My nose, which has been my nemesis since I was nine years old.

I was bawling yesterday about the number of meds I'm on, and I said to Alexis that I was reasonably healthy during the first year after moving back here from Florida. So what's wrong now? What is so different?

Unfortunately, I know exactly what's different; and I hate it. It's my eating habits. I allowed myself to crash my diet, and slowly the cravings have taken over. I managed to keep my weight down with no trouble at all: I continued eating "good stuff" and used portion control with other stuff. But this has nothing to do with keeping my weight or cholesterol under control. This is about my immune system. I have a crummy immune system to begin with; and it's inhibited by medications that I have to take for the rest of my life. I should be a lot more careful with it than I am. I can't make it work ten times as hard as it's really capable of working against allergens and then expect it to be strong enough to fight off infections when they come. I can't put junk in my body and "cover" with meds, vitamins, etc. This is not easy stuff to say to myself. I don't like the implications at all. There is so much I would have to give up; and I honestly don't know if I can do it. I did it once before; but that was easy. I only had to avoid what one person was eating. If I was struggling with cravings, I could just ask her not to buy chocolate for two weeks. If I was mad, I was mad and she understood why. It won't be like that at all this time. I am immersed in "the real world," where everyone eats junk and junk is considered fun and normal and "sociable." I'm invited to social gatherings where other people plan the meals, and I can't just define my dietary restrictions because they're so complex. I would pretty much have to take my own food, which would be fine if I wasn't smelling all the things I love and feeling "different." I already feel "different" enough... And I can't be angry about this. I need to do this with grace ... because it isn't a punishment. It's about keeping me healthy and able to participate as much as I can. What good is eating all that stuff and being "included" if I then am weak and get sick and have to stay home fighting off infection after infection and can't be who I am supposed to be? But it's very hard to keep myself motivated by this line of thinking. It requires a long-term mindset, and I'm not very good at long-term mindsets.

I haven't "made the leap" to committing to this decision yet; but I'm very close. I hope I don't end up needing another wake-up call. The idea of losing my meds has just about pushed me over the edge. In fact, it was being without meds that started me on this road in the first place. Part of me wonders if God is allowing me to experience the risk of losing my meds in order to propel me back toward obedience. That doesn't sound very positive as I've written it; but it feels peaceful to think

I did get three hours of uninterrupted sleep last night. More about Inca later... Must get ready for class now. I've already been weepy this morning. For now, it's time for my last doughnut. Must... Eat... Slowly.......


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