Visit to the Endo, and some chiari stuff.

I went to see my endocrinologist on Tuesday. I just wanted to fill him in on everything that has gone on since I last saw him, which was November. They took some blood to test my thyroid, ACTH (pituitary) and they are checking my estrogen levels to see if I could possibly be perimenopausal. I have pretty regular but awful periods. Once in a while I have one that is a week early, but I’ve never had a late one or missed one. They make me absolutely sick. I also have hot flashes, which can sometimes happen to people when they have their period, but I seem to have quite a few menopause-type symptoms so it would not at all surprise me. Those symptoms could also be explained by a thyroid malfunction, so it’s hard to tell. I will probably get the results in the next few weeks.  

The good news is my Endo says that my Addison’s Disease is pretty well under control. I feel pretty lucky because in my support groups on facebook, other Addisonians are in the ER for crises all the time, and I am not. I don’t know why I’m not, other than the fact that I have a top-notch doctor, and a family who loves and takes care of me. I am relieved to hear him say that.

As you’ve read in my other posts, I’ve been having chronic heart palpitations and chest tightness. Through process of elimination I’ve been able to determine that I have a newly-developed sensitivity to sodium-based preservatives and so-called “flavor enhancers” (whatever the f*** those are…), and now that I have eliminated them from my diet I rarely have an episode anymore, unless I am dehydrated or I eat something with preservatives in it by accident. You wouldn’t believe how hard it is to find foods that don’t have a bunch of bullshit in them these days. I don’t even have to read the ingredients anymore. If I glance at it and the list is too long, I put it back on the shelf. My crackers are only supposed to have flour, yeast, water, and sodium chloride (which doesn’t bother me in small amounts.) If there is anything beyond that, it’s gotta be bad. If sodium chloride is the only form of salt in the product, and the serving has less than 500-600mg of sodium, then I can eat it without an issue. I’ve been eating a lot more things that are made from scratch at home rather than something from a can or box. It’s really hard when your energy is limited to not be making easy prefab meals, but I have my mom to help me out so I feel pretty lucky.

I also have reactions from products with high fructose corn syrup for whatever reason. Regular cane sugar in my coffee doesn’t bother me at all. My blood sugar levels are always within normal range so the only thing I can think of is I’m allergic to it, which is a bummer because it’s in freaking everything.

I’m having some new issues with my chiari. I don’t know if it’s progressing, or if it’s just the fact that it’s summer, but I feel awful. Whenever I get head pressure now, which is practically every day, it makes me want to throw up. Sometimes I actually do, but most of the time I am fighting it and trying not to gag. It sucks because it lasts for hours. The weird thing is, it doesn’t ruin my appetite. I could be hungry and trying not to throw up at the same time. I guess that’s how you know it’s not directly related to my stomach. I usually try to eat if I think I’m not actually going to vomit. I thought maybe it could be a hormonal phase but it seems to happen even when I’m not having my period. It does get worse around then though. But then again, everything gets worse around then.

I’m having an especially hard time with sitting and bending over. It has always bothered me but it’s getting worse every day it seems. It makes me antsy and I spend a lot of time standing to avoid the pain and pressure from sitting, and in turn my feet hurt at the end of the day. The list of things that result in an immediate relentless headache is getting longer and they are also getting harder and harder to remedy. 

I have gathered all the necessary medical files to submit to the neurosurgeon so he can review my case before I go in to see him for a consultation. They will be mailed off soon and I should have an appointment pretty soon after that. Every day I look forward to it a little more. I am more afraid not to have surgery than I am to have surgery. I don’t know if I will be saying that when surgery actually becomes a reality but I’m also not sure I will feel so different about it than I do right now.

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Benlysta #7 and #8, and some other stuff.

This is a combo blog, of my last two infusions. I took a break from writing because I had a lot going on in the way of trying to get my infusions, and the insurance company messing it up as usual.

Both infusions went great. For #7 I think I was a little more headache-y than usual. It can be hard to remember to drink water to ward off the headaches, especially when your drive home is over an hour and you don’t want to spend the majority of it “having to pee.” 

#8 was better as far as headaches go. I have been better about drinking water, probably almost too good about it, because I have been having bad dry mouth as a side effect and I’m always thirsty. I’ve been peeing a lot, so I went to see my rheumatologist for a separate appointment to make sure it isn’t something serious. I gave a urine sample, which is always puddles of fun if you’re a girl. For some reason, doctors in California refuse to have funnels to make it easier. My east coast friends couldn’t believe we don’t use those, and I didn’t even realize they made such a thing. Anyway, they’re checking to see if I could have a mild UTI, which are common in people with autoimmune issues, especially lupus. I don’t have any other symptoms besides being really thirsty and peeing a lot. The doctor seemed to think maybe I was just drinking too much water. I told her I drink probably 6-7 bottles a day, which doesn’t seem like anything outside a normal amount to me, especially with my sudden sensitivity to salt. I can’t eat hardly any salt without having heart palpitations after, and that usually makes me drink more water to get rid of it. She wanted me to restrict my liquid intake, but I’m not comfortable doing that, especially since it’s such a dry climate here, and since my Addison’s disease effects my electrolytes. I will, however, make it a point to drink something besides water. I want to make sure I’m not having so much water that I’m depleting my electrolytes. With all the vitamin-enhanced drinks they have now, it’s easy to find something that will work, and I’m also a big fan of smoothies and decaf iced tea.

My next infusion is in about a week and a half, and I’ll call tomorrow to find out the results of my urine sample. We also talked about seeing a pulminologist to see if my “heavy chest” symptoms are actually asthma, and treat it with albuterol. I’m not excited about that since I already have heart palpitations and albuterol can cause them, but if I am asthmatic I can’t go without it. I had pollen and exercise-induced asthma as a kid, and maybe with the lupus and lung sensitivity, it’s making an appearance again.

My mom and I did the run-around to get some records together for the neurosurgeon. There’s still a few more things we have to collect before we mail them in. After he receives them and looks them over I’ll be able to schedule an appointment. Even though I will probably get an appointment in with him a month from now, it seems like an eternity. I know I won’t get relief from my headaches just by talking to him, but I’d like to have a plan. I really hate it when things are up in the air.

I have an appointment with my Endocrinologist in a few weeks. I have a feeling he will be testing my thyroid because I have a lot of unexplained symptoms. The heart palpitations, hot flashes and chills, sweating, and weight loss could all be explained by a thyroid issue. They could also be explained by the Chiari so it would be important to rule out my thyroid. It is possible I need a steroid adjustment for my Addison’s too. Last time I saw him I told him I suddenly can’t tolerate salt (which is weird for addison’s, we are supposed to eat more salt) and he just said not to eat salt. That was an OK answer 8 months ago, but I want a real answer this time. Something is obviously going on.

Well, I think that’s everything. Ta ta for now.

Restasis eye drops and Lupus.

You’ve probably seen the commercials for Restasis eye drops while you’re chillin’ watching TV. It’s not a very informative commercial as far as telling you how the drug works, and since I’m using them I thought it might be helpful to some people if I explained how they work and what to expect.

There are multiple causes of chronic dry eyes, some are autoimmune, in which case Restasis drops would be effective. I have Lupus, which is an autoimmune disease, which most likely raises my chances for having an autoimmune-type chronic dry eye.

Your immune system can attack your tear glands, which in turn makes them produce less tears, leading to dry eyes. Restasis is not a soothing or lubricating eye drop, it’s actually an immuno-suppressant. It works by telling your immune system to cut the crap, with the hopes of your glands healing and producing tears again.

I’ve read a lot of mixed reviews for Restasis. Some people get bad side-effects from the drops, like stinging, burning, and itching, which have been bad enough in some instances that people had to discontinue the drops. For some people, relief can take months, others seem to get relief within a few weeks. It seems to be case-by-case, and you won’t really know how they’ll work for you until you try them.

I normally wear contacts, and have for about 9 years. My prescription is -3.75, which isn’t too extreme, but I can’t see without them. I wear acuvue one-day moist, which I started wearing a few years ago because monthlies were getting too much protein build-up on them and they weren’t comfortable for an entire month. About 6 months ago or so I noticed my eyes were a bit dry, and it just went downhill from there. Just in the past 2 months or so I haven’t really been able to wear contacts at all. Even though they are called “moist” a problem with lenses that are made up of a higher percentage of water is, to stay wet, they have to absorb moisture from your eye. This is OK for people who don’t have dry eyes, but it hasn’t been working for me. I’ve been wearing my glasses nearly all the time now, and don’t get me wrong, I have a nice little collection of cute frames, but it’s uncomfortable for me to have the frames on my face all the time. My headaches are so bad that I can’t stand the weight of anything on my head, glasses, hats, ponytails etc, so I really miss wearing my contacts in these situations. I have super-lightweight lenses which definitely makes a difference but it still is a problem I fight with constantly. I have also given up wearing any kind of makeup, because my eyes are so dry the slightest little grain of anything causes huge irritation, and there isn’t a big selection, if any, of contact-safe eye makeup (no company wants that liability…) I don’t feel like I need makeup, but it’s something I enjoy from an artistic/fashion standpoint, and I miss having fun with it.

So, I took the plunge. I was really expecting them to irritate my eyes, but they don’t. I don’t get any of the side effects, which is pretty lucky. I’ve been using them for about 5 days and they seem to already be helping, which is lucky too, since I was expecting them to take a few months. I had a day this week where I wore my contacts and eye makeup, for about 8 hours, and I only had a little dryness. That’s definite progress. I’m still going to be careful how long I wear my lenses and skip makeup most of the time to give my eyes a chance to heal.

My prescription is written for a drop in each eye, twice a day, about 12 hours apart. They come in single use vials instead of the usual bottle, and they have no preservatives. It’s still too early for me to know how they will work out in the long run, but so far, so good. I’ll continue to write about how they are helping me. Also, if you wear contacts, it states that you should wait at least 15 minutes after using the drops to put your contacts in. I typically wait longer since I use the drops first thing in the morning, and I don’t like to put my contacts in until I’m fully awake.