feeling yuck…

Last Thursday I saw my dermatologist in the morning and my family doctor in the afternoon. I absolutely love my dermatologist. He’s one of those doctors who doesn’t give up until he gets an answer and if he doesn’t like the first answer, he keeps working at it. He’s one of the few doctors who make you feel like you matter. Yes, he’s insanely busy, is super hard to get appointments with and isn’t getting any younger (he started practicing medicine in 1975) but he makes you feel like you’re the only person he sees when it’s your turn. He’s the one who eased my fears immediately about the potential for having cancer. He’s also the one who did all the blood work and biopsies and finally figured out that I have an autoimmune disorder. He’s the one who referred me to a rheumatologist, told me that he believes I have lupus and asks me every time I see him about ALL of my symptoms. He doesn’t care if it takes 5 minutes or 20 minutes–you don’t leave his office until he is satisfied he has all the answers.

So Thursday morning, he did his thing, asked tons of questions and then gave me good news and not so good news. The good news is that I’ve graduated from his practice and I no longer need him as a dermatologist. He did tell me that if something came up in the next year I wouldn’t need a new referral and could just call the office to book an appointment, though. Then he started going over the not so good news. He was talking about my symptoms (weight loss, muscle pain, stomach pain, joint pain etc.) and he tells me he suspects I might actually have MCTD (mixed connective tissue disorder) and not just lupus. He told me I need to see a rheumatologist as soon as possible (I have an appointment with mine in April already), he mentioned something about my kidneys and then looked at the student nurse he had with him and said ‘oh, we need to make sure we keep a close eye on this one’. Ugggh…what does that even mean? Then he told me that my family doctor as well as the rheumatologist should be helping to make things feel better. We said goodbye and I honestly hope I never have to seem him again because if I do it means I’ve developed some more weird rashes or skin thingies but gosh, in some ways I’m really going to miss that doctor.

Then I went in the afternoon to see my family doctor. For those of you who haven’t been following me for very long, my family doctor is, well, he has the tendency to be a bit of an ass a lot of the time. If you want, you can read all about him at methinks I might need a new doctor and don’t make me feel unimportant So, I walked into his office hopeful that this time would be one of the times he was actually helpful but I was sadly mistaken. He was in one of those moods where he’s too abrupt, wants you out in 2.5 seconds and never lets you finish saying what you need to finish saying. I told him I’m having a lot of pain in my stomach–like all the time and that my rib cage is still sore. I told him I’d lost 15 pounds in 3 weeks and while I could stand to lose weight it wasn’t being done on purpose or the right way. He didn’t check anything and just gave me another drug to try on top of what I’m already taking to see if that would ease the stomach pain, told me to come back in 3 weeks and that was it. God, I absolutely loathe the way he just dismisses people like that.

Then it was time for research. I don’t know about any of you but I will never blindly take any medication without researching the crap out of it and in doing so I find out that this new medication may, in some people, either cause drug-induced subacute cutaneous lupus erythematosus (this includes rashes on the face and skin, photosensitivity, & oral lesions) or it may worse symptoms in people who already have lupus. GREAT!! Just what I need–the potential of worsening symptoms. So I hemmed and hawed and felt the pain in my stomach was so bad that I had to start taking it. Good news, the stomach pain seems to be slowly dissipating (except when it doesn’t). Bad news, the side effects are another level of nightmare but so far do not seem to include any lupus-related symptoms.

As for the MCTD I refuse to go down that road again where I don’t know what’s wrong and my mind takes me to places I don’t want to go. All I know is that MCTD is a rare autoimmune disease characterized by features commonly seen in three different connective tissue disorders: systemic lupus erythematosus, scleroderma and polymyosisits. Some people may also have symptoms of rheumatoid arthritis. The treatment is quite similar to what I’m already taking, so perhaps that’s why I’m not completely freaking out at the moment. I’m sure that’s yet to come.

On top of everything else, I’ve been finding myself getting quite overwhelmed with everything lately. I’m tired, but I don’t sleep well. I lose T almost on a constant basis and that incessant fear that he is going to up and disappear is raging in the background. While it seemed like I’d finally gotten my oumpf back at work from October-December, I’ve gone and lost it again. My concentration level is at the bottom of the barrel and I just don’t care and I’m dissociating more than I’m present yet am doing absolutely nothing to actively fight against it.

I’m not quite sure what’s really going on inside but I have a few theories. It’s less than two weeks away from the day my father died almost 10 years ago and the nightmares are ramping up full force. It’s also coming up to a year since M has not lived with me on a permanent basis and while I’m trying I’m not quite sure I’ll ever settle into that new normal. Then there is the fact that this autoimmune disease is literally kicking my ass and I’m basically done with it all.

I still find it amazing how quickly things tend to shift. I feel awful and I hate feeling like this. I’d like to go back to a time before when sure, things were uncomfortable, but it wasn’t this all-consuming discomfort inside. Or I’d at least like to have the ability to go back to where it was either physical discomfort OR mental discomfort. Not like now. Not when it’s both. Truthfully, I’m feeling a bit lost. I’m not sure what to do. I’m glad that T and I are back to meeting twice a week. I didn’t realize how much I needed that extra time–or maybe it’s more like I knew I needed it, but was afraid to ask for it. At least one thing seems to be moving in the right direction.

4 thoughts on “feeling yuck…

  1. I honestly don’t know how you’re coping as well as you are with the auto-immune disease stuff – you sound so calm and stoical about it and I am full of admiration for you xx

    Liked by 1 person

    • thanks love. I don’t know really. I feel like there is still a big part of me that doesn’t even actually own the fact that something is wrong. Like if I keep it off in the corner somewhere, then it isn’t really a part of me. Not entirely healthy, but at least it works for now.
      Hope all is well with you? I know you’d posted ages ago about getting tested for lupus I believe. Did they determine anything? It’s so frustrating how long it takes to figure out these sorts of things. xx

      Liked by 1 person

      • I guess it’s kind of one of the benefits of dissociation in some ways… Maybe. I am okay thanks, better than before Christmas at least. The rheumatologist refused to see me based on my bloods which only had one lupus indicator raised, and I *think* my face rash is rosacea. So I’m hoping none of it turns into anything auto-immune, but it may well do… xx

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