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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.......


( 3 comments — Leave a comment )
Oct. 10th, 2006 11:10 am (UTC)

I learned a long time ago that God never gives you more than you can't handle.

Maybe He's trying to tell you that you're stronger than you think you are.

I have self-doubts about that too, but I'm still here, kicking and screaming, so I guess I'm slowly learning that I'm not as weak as I think I am.

Hang in there hon; you've got people praying and rooting for ya!

Oct. 11th, 2006 03:06 am (UTC)
Glad you got some uninterupted sleep! As one who has frequent and severe problems sleeping, I completely understand.

Regarding diet, I just went to the doctor myself today (will post about it tomorrow) and I discovered that I've lost 9 lbs in the 2 months since I was there last. And all I did was change my eating/grocery shopping habits. This is with periodic "cheating" & no exercise. I wasn't even actively TRYING to lose weight this time - just trying to eat healthier! (also helping to address a health issue my husband's doctor brought to his attention)

One thing that has been important to cut out is white flour and white sugar. When I need sugar for tea, I use "sugar in the raw" - it's all natural rather than the refined, chemically treated white crap. If you have to eat sugar, eat it in its most natural form.

We only eat whole grain, whole wheat (bread, english muffins, pasta & crackers). Only whole grain cereals. We've cut WAY back on the amount of red meat we eat. Ground turkey & boneless chicken breast makes up most of our meat eating. (I stock up and freeze it when it goes on sale) On occasion I will treat us and get a package of 93% lean ground beef since Frank loves meat loaf but doesn't like it made with ground turkey.

We stopped using butter and use "Smart Balance Light" instead. (it's a vegan, lower fat option and it tastes great and is actually good for you!) We eat fat free everything when it comes to dairy products. Milk, half and half, sliced cheese, shredded cheese, cottage cheese, sour cream, cream cheese... you name it. It was either fat free, or give it up completely. And even though the fat free stuff doesn't taste as good as its fat laden counterparts, its an acceptable substitute. We buy our eggs at a farm down the road, and they're laid by grain fed (not mash fed) hens, so the eggs actually have less fat in them than the ones you'd buy in the supermarket.

We eat lots of fresh veggies (frozen when we can't get fresh) and fresh fruit. I don't bring sweets into the house anymore. Well, not regularly. I have bought a couple of single serving cupcakes in the past couple of months, but hey. No one's perfect. :)

Anyway, if I can lose 9 lbs without trying - imagien what I could do if I finally got off my butt and worked at it? (I have about 135 lbs I need to lose. According to some chart, I "should" lose 160 lbs, and if I can do that - GREAT! But I'd be thrilled to death if I can just lose 135 lbs.)

Wow. Sorry this is so long. I didn't mean to get into all that, but it just kind of spilled out. Anyway, if I can change my eating habits, anyone can. I am the original chocoholic with zero willpower. *grin* You CAN do it! I believe in you.
Oct. 11th, 2006 06:03 am (UTC)
Wow! and thanks
I've actually lost about 40 lbs since originally starting this. It's no longer about weight loss--I'm in a size 14, and my cholesterol is in a tolerable range, and if I lose any more weight it will be icing on the cake because of all the meds I take (steroids and psychotropics). It's very hard to lose med weight, so the fact that I've lost three sizes is like a dream. It's all about the neurological issues and immune system stuff at this point. Unfortunately I have allergies to fish, which knocks out a meat category; and I steer clear of cheeses due to migraines. One reason this entire plan is hard is that I was trying to do South Beach, which is very cheese-dependent. All of your snack things during detox phase are cheese-dependent. So I'm out a major source of calories. All of your substitute things are made with Ricotta... I did great with the transition away from sugar, from white to wheat flour, etc. But taking away my "snack foods" and putting me into detox, all I had to eat was veggies, meats and nuts because I was limited to one sugar-free item/day. It feels extremely depriving--and I have to eat a lot more of those things to get the calories that I've lost in the cheese... It explains why I was constantly hungry; and I was really really broke and couldn't afford to feed myself well.

But I'm trying again. It may be a bit easier if I don't completely detox, although a complete detox would be very good for me. I don't drink soft drinks... The hard thing will be dealing with seminary community meals. I really dislike the idea of feeling singled out because I'm eating something different. I'm already struggling with a lot of deep emotional stuff over there, and I hate feeling set apart in yet another way. I ate lunch today--the main dish was fine. If I am not eating this stuff all the time as I have been for the last two years, I might be able to indulge for the sake of community upon occasion. But not without getting it under control first.
( 3 comments — Leave a comment )


Sarah Blake LaRose
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