My rheumatologist, my hero

So I'm basically tired of writing about my pain and sickness... but that's probably because a.) I'm tired of dealing with it myself, and b.) I'm afraid that anyone who reads this is tired of it as well. Like, geez, doesn't this girl do anything but moan and groan about how sick she is?

Not really, no. Heh.

In any event, I saw my rheumy yesterday-- finally! I made it through some days that I thought were impossible to make it through, which just goes to show that you can "handle" just about anything, no matter how painful it is. The inevitable passing of time sees to that, so long as you don't take matters into your own hands and end your suffering. I thought about it more than once, I will not lie. When you're hurting so badly... it's not that you necessarily want to die, it's just that you don't want to live that way any longer, and you're not sure if you can stand another minute without the prospect of relief.

Why do I love my rheumatologist? Because I feel like she takes me seriously. Maybe she's not the best out there. I don't know. I've never been to another. I figure why fix what isn't broken? I've taken to bringing a list with me of positive progress, negatives that have cropped up, and questions/issues I'd like to address with her. She listens patiently, explains where necessary, and always answers my questions. I wish there were one quick fix to what I'm going through, but we're still in experimentation mode, which means trying different levels of this med, trying that med, adding this one and eliminating that one... so, as of yesterday, I've got the go-ahead to wean myself off of Savella, the crazy expensive fibromyalgia med that doesn't really seem to be helping. I also wanted to get off the gabapentin (Neurontin), because I don't see any effect there at all, but she felt that upping the dose would be a beneficial experiment because not only would quitting it mean that she is then no longer really treating my fibro at all but also because I'm still on a fairly low dose and a higher dose may be what I need. I expressed my struggles with depression, and she is having me give Zoloft a try (I can't remember off the top of my head what the generic is called... something with an "S".)

In addition to fiddling with the meds, she swapped out my Tramadol for Tylenol (acetaminophen) with codeine. She says that maybe my body just needs a break from the Tramadol, so we can try it again later and see. So far, I'm so not impressed with the Tylenol 3's. They take forever to kick in, and while they last for a while it doesn't really take care of the pain in a significant manner. It will take it from intolerable to pretty tolerable or a little below, but it doesn't really take it down to a level that I feel is compatible with functional living. Maybe that's because my body is pretty intolerant to NSAIDs? Maybe I just need to learn better pain management/coping skills? Bleh. I'm going to give it a week and if I'm still unhappy with how it's working then I'm going to call the office and request a switch. (One of the questions I asked in the appointment was what her policy is on contacting the office with questions or concerns between appointments, and she pointed out that she didn't want me sitting at home in tears because of pain and I'm trying to tough it out until my next appointment... which means that I should have called. Hehe... oops.)

This new pain med is easier to get addicted to than the Tramadol, from what I understand, so it's to be taken in a reactionary way, not a preventative way. That means that I actually have to get to the point where I'm thinking, "I really can't take this pain anymore," before I take one. The problem I'm having is that I struggle with knowing when I ought to not take the pain anymore. My sense of pain levels is all skewed. I think I've mentioned that before. I suppose it varies from day to day, too. On days when I'm very fatigued, I'm more susceptible to pain than days when I'm energized and rested

She sees overall progress, though. She pointed out that it seems that I'm doing better with how I deal with my fibromyalgia, and she's right. Though I still struggle with depression more frequently than I'd like, overall I'm dealing better. I have a good support system, I'm getting more educated, and I'm learning to adapt to my new life. Also, one of the positives that I brought up was that I'm hardly stiff in the mornings at all anymore, if at all. Apparently, that's a sign that the Plaquenil is working, which means that I'm responding to treatment for the UCTD. Although she's reluctant to give me an official diagnosis of UCTD, the symptoms I'm exhibiting and the fact that I'm responding to treatment for it make her lean more strongly in that direction than she was even last time. The problem is that many of my symptoms could also be due to the fibro, as well. When it comes to stuff like this, the overlap is unbelievable, and it's difficult to work out what exactly is going on. I haven't even been dealing with this a year yet, so in relative terms I'm way ahead of the game. (Isn't that sad?) Many, many people spend years trying to get the initial diagnosis of fibromyalgia, and I got that dx on my very first rheum visit. I am fortunate, very fortunate. (There's always something to be grateful for, eh?)

The next few days will be spent adjusting to the new meds, crossing my fingers for minimal side effects, and preparing for my trip to Cali. I leave in just three days; four, if you count today. Fortunately, I spent the last two weekends dog/housesitting, so that will be my gas money.

Did I mention that C's truck broke down last weekend? I find it amusing, because my car is supposed to be the one on its last legs! His fuel pump just quit, out of the blue. We got it fixed, but the price ate up what we had tentatively set aside as our gas money for the trip to Id. It's not for sure that we can't go, as C has been working quite a bit of overtime lately, and will probably continue to do so, but it's not for sure that we can go, either. What a pickle to be in... We won't know for-sure-for-sure until closer to the date, but I hate to have J under the impression that I'm coming if I might have to back out later on... Yet on the same token, I don't want to have her wildly swinging on a roller coaster of "Are they coming or aren't they?" But we have to go, not just for J's wedding. I need to get my cat, and the rest of my things! Plus I want to show C off to all of my friends. That's a good reason, right?

Well... I'm going to attempt this sleep thing again. Maybe I'll shower first. That tends to wear me out. I took a Ty3 a while ago, so that should be kicking in... in an hour or so. Hmph. Again, so not impressed. Here's hoping those painkillers get their act together!

1 thoughts:

  • Transitional Gypsy | June 19, 2013 at 9:51 PM

    Don't worry so much about the complaining. If people are reading this they must be interested in the truth about you. If they aren't and the complaining bothers them they can always stop reading your posts.

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