The Battle with the Dr. Cont.

There’s not a whole lot to update you on. I’m still at a standstill with my Rheumie. Tomorrow (Wed.) will be day three of waiting for her to return my call about coming off the Cellcept and wanting to look into biologics further.

I suspect we’re in a standoff. I hope not but I won’t be surprised if she ditches me. If she does it will confirm how I’ve been feeling about her. If she does, she hasn’t been a whole lot of help anyway. If she does, I think I still have my Internist in my corner but he can’t script biologics so..It may mean I have to wait until spring to see a new Rheumie.

Things are so uncertain. It’s a crap shoot being on the meds, it’s also a crap shoot coming off of them. Neither choice is good, but for now I need to know how I’ll fair without the immune suppressants, because I know I’m not doing well on them at all.

Honestly I feel like if the disease doesn’t do me in, the meds will anyway. Which one will allow me a better quality of life? Anyone’s guess. There’s only one way to find out.

Life is about risks. I have to do what I feel is best for my quality of life.

Have any of you ever had a Dr. explain the disease or medications to you? I never have. I’m so thankful I researched a lot before I saw Dr.’s I knew what was going on with me before they did. I knew what meds might be given and I knew all about them. I knew about autoimmune disease.

It would have been a scary shock had I not known. Why don’t Dr.’s give us any information anymore? It boggles my mind.

This autoimmune disease is scary, it’s life threatening as are the meds, and Dr.’s tell us nothing? How is that “Do No Harm?”

That’s my Cranky Pants rant for today. I didn’t even know I had that in me until I started typing.

Sunshine & Sparkles


7 thoughts on “The Battle with the Dr. Cont.

  1. Doctors! Humbug! Seems like you’re between a rock and hard place.

    So am I right now, CP. Jake came home on hospice yesterday. Last night he went completely out of his mind. Wife and I had a sleepless night trying to keep him from crawling out of bed. He has to go into a hospice facility. We just can’t handle him.

    I am going to be very occupied the next few days. You may not hear from me for a while. Got a unicorn that’s running very fast and very far away from me, and it will take a while to catch the bastard.

    Take care.

    Liked by 1 person

  2. A lot of what doctors do in modern times is to deliver care based on decision trees. As an example, your doctor might have been advised not to prescribe a biologic until you have fully tried the immune suppressant. (I’m not suggesting you follow along with their plan). In a lot of cases, doctors have some leeway around the decision tree but they follow it because they are inexperienced and feel they must “trust the system” or sometimes just because they are stubborn minded and egocentric. If the doctor drops you because you don’t follow their orders, good riddance! I know it always sounds easier than it actually is, but my experience has taught me that I cannot work with a doctor who does not see medicine as a collaborative process. There are so many medicines I have tried along the way that have not worked out for me. In fact I have two boxes of them in my closet. Modern medicine is about throwing meds at people in order to deal with the symptoms, without addressing the actual problem. Have you looked into low dose naltrexone? It is a great treatment for auto immune disorders and there is good science behind it.

    Liked by 1 person

    1. Thank you so much for this. It’s so helpful. I don’t feel so alone. I do know that I had to give all these meds ample time and I did. I have to exhaust all other options which I now have. MTX I was on 6 months, Immuran for a year and Cellcept for over three months. They have all caused the same issue (with extra issues each of their own) the common issue has caused a situation which could land me in surgery if it doesn’t get better.
      Although I don’t wish it on anyone, it’s good to know that I’m not the only one who’s body doesn’t tolerate the medications well. I’m still taking Plaquenel.
      I don’t like that’s she’s trying to force me to make another 10 drive to see her, when she’s seen my joints once, knows they’re not getting better but worse, and my Internist has sent her an assessment of my joints in a bid to save me the trip. She comes across as cold, arrogant, and blaming.
      Her secretary said to me she will refuse to apply for the meds for me unless she sees me again. Like you said, well good riddens then. I’ll have to wait until spring to be able to see a new Rheumie because of the brutal winters up here.
      How are you doing today?

      Liked by 1 person

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