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I didn't get a treatment plan, but I do have an action plan

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I’m not getting excited about treatment or a diagnosis anymore.

On Thursday (05/12), I saw my rheumatologist. After waiting over an hour in the waiting room as per the usual, I finally got an exam room. Dr. Greco had who I’m assuming is an intern in the hospital look over my blood work, talk to me about my symptoms, and then give me an exam. She was really nice. And pretty. And thorough. I am not at all against seeing an intern. In fact, I’m kind of all for it, since they tend to have fresher eyes. After all, interns were the ones who figured out what was wrong with my godson when no one else could. So, even though I thought that I would be seeing Dr. Greco to discuss a treatment plan for RA, I treated the intern as though I were intentionally seeing a new doctor. I can’t quite remember, but I’m pretty sure her name was Dr. Patavel. I’m probably wrong, though, and I feel bad for forgetting her name.

I showed her my nails, and she said they are pitting (so clearly I suck at research), and that it can be caused by vitamin deficiency. She also said that some types of Psoriasis can cause nail pitting, skin rashes unlike what we normally see as Psoriasis, and joint pain. We also talked about my GI issues and I told her that I’d stopped taking Levsin because it made me sick.

Dr. Greco came in shortly after. He asked her what she thought of me. She ran through everything: I have no signs of anemia, I had a positive double-stranded DNA, I have symmetrical joint pain, my nails are pitting, etc, etc. She also mentioned the possibility of Psoriasis. Dr. Greco checked my pressure points for fibromyalgia again, and as usual, I didn’t have any pain where he pushed (except for in my left shoulder, but I can explain that: stress). We discussed my visit with Dr. Zlotoff again, and he asked her what she would diagnose me with. She said she didn’t know, and then Dr. Greco went into Action Plan mode.

He told me that he wants me to keep a thirty-day record of the pain, on a scale of one to ten (ten being the worst), with a list of what hurt that day. During two weeks of those thirty days, I’m not to take any Tramadol. Then, after those two weeks are over, I’m to take 25mg of Tramadol every morning, to see if it will help the pain after building up in my system. So, the record will show what my pain is like with no Tramadol, just Tylenol, and then with 25mg of Tramadol daily. I’m kind of afraid of going without my Tramadol crutch; even though I can’t take it during the day if I’m out and about, I always know that it’s there when I get home. Still, I went without it before I-forget-which-doctor prescribed it to me, so I know that it won’t kill me to go without it for two weeks.

I’m also to start some kind of exercise program, like Tai Chi. I’m thinking yoga, so that I’ll have an excuse to buy some VS yoga pants*. I’m only half serious; I know that yoga is supposed to be good for toning, when you’re like me and ellipticals and Jillian Michaels videos hurt. Dr. Greco said, “I want you to become an exercise freak this summer.” It’s better than when Dr. Lichter told me to get a gym membership and sent me on my way¹, but still. I guess it’s just hard to believe that I’m over four years into all of this, and still miles away from a diagnosis.

He also said that his cousin is a rheumatologist in Southbury, and that his cousin has a wider knowledge of pain medication. (You know. Since every medication I’ve tried either doesn’t work or causes a bunch of odd side effects in me.) He’s going to talk to his cousin to see if he can get some ideas of other meds I can try. (Yippee? Honestly, I’m kind of afraid of meds now.)

Dr. Greco said again that something is definitely brewing, and now I’m starting to understand that this is going to take more time. It might even take something drastic. Like, I might not get a diagnosis until whatever this is decides to really rear its ugly head and send me into the ER for something life-threatening, like on Mystery Diagnosis.

Here’s what I’ve realized: I want a diagnosis, not treatment. I just want to know. If somehow, out of that diagnosis I get treatment, fine, but that’s not what I’m after. (Then again, today isn’t a bad pain day, so ask me again when I’m laying in bed in agony.) I want to know what’s wrong with me, so that I can move on with my life. I hate that not having a diagnosis also limits protection of my rights. More than that, though, I hate wondering whether I really am just crazy. I know I’m not crazy, because this pain is all very real, but sometimes… sometimes, yes, I question myself. I think, Are you sure that you’re not just letting this happen? Like, creating hysterical arthritis or something? Are you just subconsciously fabricating all of this for attention? Usually, this happens when I’m feeling desperate, like when blood work comes back negative again, or when I go to a doctor’s appointment expecting a treatment plan and find myself back at square one again, instead.

I hate running into the proverbial brick wall over and over.

Brick wall

Brick wall, by zoreil

But that brick wall will never break me. I may feel like I’m cracking quite often (whether it’s health-related or not), but I’ve learned to take a day or two when that happens. During that time, I lay in bed all day and watch Grey’s Anatomy² or Batman Beyond, or play Plants VS Zombies on the DS, or read. I drop all of my problems and worries and let myself separate from it. Some people might call it hitting rock bottom, but I call it recharging. There’s no depression. Just recharging. And once I’ve recharged, the depression and anxiety I felt before feels much more manageable.

So I’m going to keep this record of my pain, and look into yoga, and hope that the diagnosis comes without me having to end up in the ER. I’m going to try to stop getting so excited every time I get blood work done, or a new symptom pops up, or my doctor mentions a treatment plan. I’m also going to try to stop questioning myself when I hit that brick wall; I may not be able to trust my body anymore, but I have to be able to trust myself. I also have to be able to trust my rheumatologist, and believe that he’s still doing everything possible to find out what’s going on.

I have started thinking about getting a second opinion. I’m kicking myself for canceling my appointment at Yale. I’m just wondering if maybe, if I see another rheumatologist, they’ll pick up on something else we’ve missed. I’m also wondering if there’s something to the theory that some autoimmune diseases are triggered by viruses. I had mono when I was seventeen, and mono is known to later trigger some autoimmune diseases, such as Rheumatoid Arthritis, Lupus, and Sjogren’s Syndrome. Mono is caused by the Epstein-Barr virus (EBV), and in some cases some people end up with chronic EBV infection… and sometimes Chronic Fatigue Syndrome. All of these diseases — RA, Lupus, Sjogren’s, and CFS — have symptoms that match my symptoms.

So I am going to follow the current action plan:

  • Keep a daily record of my pain.
  • Look into and start an exercise program.
  • Continue taking B12.
  • Take multivitamin to see if it helps the nail pitting.
  • Call Dr. Zlotoff and talk to him about alternatives to Levsin³.
  • Talk to Dr. Greco about EBV next time I see him (07/21).

That’s all I can do right now.

Image Credit: Brick wall, by zoreil

*Yes, I’m over the whole online order thing. I got over it pretty quickly after receiving a shitload of coupons for free panties and savings. I’m easy like that.

¹This was back when this all first started, probably in 2008. I couldn’t find a PerpetualSmile.net or elizawhat.com post about it, but I’m thinking it’s in one of my old LiveJournals… which I plan on importing here, a little at a time.

²I just bought Season 3! I am too addicted now to borrow them from Sandy; I have decided to collect all of the seasons on my own. It’s pathetic. But I’m totally okay with pathetic, and I won’t even deny that I am completely obsessed with this show.

³I think Levsin did help my IBS symptoms, but it made me nauseous and dizzy… which doesn’t really help me.

Pills, pills, pills

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TGIF

Replace those Peanut M&Ms with plain ones for me, please.

I called out of work this morning because…

  • I didn’t get any sleep last night; when my alarm went off at 6:30am, I was completely disoriented (even though I haven’t had a drink in weeks; welcome to my world)
  • my right hip was stiff and sore from all of the walking yesterday
  • I had to start my new IBS medication — Levsin — today, since I couldn’t start it yesterday

It’s a really good thing I was home on the IBS meds. I have no idea how I’m going to work tomorrow… but I guess I’m going to find out. The warnings on it are “may cause dizziness,” and “may cause drowsiness,” among other things. Well, because I am me, I keep having alternating minisodes of dizziness and drowsiness. Even better, I have to take this every day, once in the morning, and then again at night. I have to take it for at least a week before I’ll know whether it’s working. Since I spent $15 on this shit, I’m kind of reluctant to stop so early. I mean, yeah, it’s “only” fifteen bucks, but when you’re “only” spending $15 on several medications, all of the time, it adds up.

Ah, the life of a sicky.

Speaking of which, this weekend kind of sucked. Saturday night I had a killer migraine. The last one I had was in December 2010, and before that, February 2010. Before that, I think the last one I’d had — which happens to be my first migraine — was a year before. So… I think it’s safe to say that I’m getting them more frequently. They really aren’t fun. Mostly because, I’ve become so used to being in pain in general, that I ignore any pain until it’s so bad, I feel like I’m dying.

It’s funny, because they say that pain is a good thing, that it’s your body’s way of telling you something is wrong… Well, listen body, this pain is wrong.

By the time I realized on Saturday that I was dealing with a migraine, I was curled up in bed in a fetal position, stubbornly trying to watch Grey’s Anatomy* while my head split open over and over, and the room spun. I took some Fioricet, which I hadn’t used at all since Dr. Greco prescribed it to me in January. Amazingly, Fioricet did two things: it didn’t get me high off my ass, and it (mostly) got rid of the migraine. (If I had taken it earlier, it would have worked better.) For the last few month, that bottle of blue pills has sat in my drawer because I (stupidly) thought I wouldn’t have to use it for a while.

Ha.

It’s amazing how many pills I am taking. I probably need one of those geriatric pill-by-day-and-night containers, at this point.

  • Vitamin B12 (morning)
  • Claritin-D (morning)
  • Extra Strength Tylenol (as needed, usually in the morning)
  • Skelaxin (as needed, usually in the morning)
  • Tramadol (as needed, usually with Tylenol, usually at night)
  • Fioricet (as needed)
  • Seasonique (7pm, or else… BABY DOOM)
  • Levsin (morning, and night)

Hell, I am probably forgetting something.

I think the reason I was also so tired today was because of the migraine on Saturday. Those always drain me; the next day, I’m always exhausted and the headache keeps threatening to come back. My dumb ass didn’t give myself the chance to relax on Sunday and “recover,” so to speak, so I guess it’s all hitting me today.

Plus, of course, the Levsin.

How many medications are you on? Does it bother you?

Image Credit: TGIF, by Glark

*I’m so addicted to this show. It’s pathetic. I’m on Season 2. The last episode I watched was half of the one after the colossal train wreck. I am a whore for Grey’s, a whore, I tell you. Add that to my addiction to the Millennium trilogy, and I am in need of serious rehab. (Click that link to read my review of The Girl Who Played With Fire!)

There is love in homemade bread and cards

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I am not doing too well.

I’ve spent the last two weeks in a fog, kind of just moving through the days. I’ve been a little better today but I can’t shake the feeling that this is only the eye of the storm.

In high school, the best parts of my days in shop (I went to a technical high school and spent my four years in Culinary Arts) were the mornings and afternoons. First thing in the morning, I would come in and fill a little bowl with chocolate chip cookie dough as it was being made by Chef I. He got so used to me snitching cookie dough that at one point he started having a bowl ready for me. (And then Chef Z and later Chef M tried to shut me down, but that’s another post for another day.)

After a day of cooking, we would eat together. If you worked on Faculty Range, in Bake Shop, or in the Dining Room, you got to eat the good stuff (as opposed to being on Cafeteria side, where you made lunch for the whole student body). My favorite thing to eat for lunch was a few slices of bread with butter and a big bowl of sauce. (And to think I stayed a size 3-5 throughout my high school career!)

I haven’t had homemade bread since.

This afternoon, while wandering around on Lifehacker at work, I found a post on making fresh-baked bread quickly and easily. I scribbled down the recipe — 6 cups of water, 3 tablespoons of salt, 3 tablespoons of yeast, and 13 cups of flour — on a Post-It and stuck it in my purse.

As soon as I got home, I set to it.

I split the recipe in half, since the Lifehacker post is for a one- to two-week supply of bread that you ideally bake a loaf every day. I dissolved 1 1/2 tbsp of yeast and 1 1/2 tbsp of salt in 3 cups of hot water (I remembered from Culinary that the hot water makes the difference).

12/21/2009: Operation Fresh Bread: Dissolving the Yeast

Then I stirred in 6 1/2 cups of flour.

12/21/2009: Operation Fresh Bread: Flour

After the dough started to come together, I stripped off my rings and kneaded the dough with my hands. The scent of it was intoxicating.

When it reached the right consistency, I patted it into a neat little ball, scraped dough off of my fingers, and went to the sink to wash my hands. I didn’t get far before the urge to try some of the dough came over me. I pulled a little glob off of my left hand and popped it into my mouth. I knew instantly that I hadn’t fucked up the recipe; it had the perfect bread dough taste, with just the right amount of salt. I scraped as much dough off of my hands as I could and ate it before washing them, it was that good.

Then I put a towel over the bowl the way Noni always did when I watched her make dough and set it to rise.

12/21/2009: Operation Fresh Bread: Dough

If all goes well, I’ll have a nice hot slice of homemade bread with butter tomorrow morning before work with Noni, Popi, and Biz Noni. I might even put some grape jelly on it. My mouth just waters thinking about it, and my heart warms just a little bit.

That gaping hole is still there, but with little things like hot fresh bread and cards from my good friends online and off, it is a little less raw.

12/21/2009: Xmas card from Sarcastica