So day two of waking in pain, or is it day three? Who knows any more. The days run together when the pain is bad. At least this time, the pain is responding to the pain pills, but it takes several hours before they kick in enough to really function, and then they only last for an hour or two before it goes away and the pain comes back in. This morning, I woke shivering. I came into the living room and shivered all morning, under two blankets and sipping hot green matcha tea (it’s good for you!)

So I took my meds, cuddled up under the blankies sand waited. Eventually, the warm came and now, here I am three hours later, sweating so badly I’m soaked like I just got out of the pool. This is insane. I don’t understand why this happens, but that’s how it is. When the meds start wearing off again, I’ll start getting stiff and cold again.

There was a cryo-gobulin vasculatitis test that my doc wanted me to do a while back, but we had to go to Galveston to do it, and I never made it over there before the lab order expired. I’ve been doing some reading about it. I’m now wondering if I should have gone and done the test. It might explain the pain I talked about in my last blog post. It might not. But it might.

Ack, hope is a bad thing. It really is. It builds me up thinking maybe I could finally get some answers, and I always end up let down. Test after lab test turns out negative. Will this one to? I don’t know.

Oh, that’s not true. That’s my negativity talking. Plenty of the lab tests came back positive. I mean, I have hypothyroidism. I have adrenal insufficiency. I have Factor V Leiden coagulation (which probably contributed to the CTEPH). I have congestive heart failure from the Pro-BNP test. So yeah, plenty of them do come back positive. It’s just, the one thing I’ve been dealing with that makes me FEEL the worst hasn’t even gotten an answer.

Isn’t that what doctors are supposed to do, make you feel better? It never seems that way to me. They seem to always work to make the test results better without much care about whether or not I feel better. I fired my endocrinologist. The endo department where I go proceeded to tell my son that he would get Mad Cow Disease from taking Armour Thyroid. How he’s supposed to get Mad Cow Disease from a porcine supplement, I don’t know. I guess that doctor has never had sausage or a piece of bacon or a pork chop in his life. Stupid. This guy really sat right in his office and told me that I was going to lose all my bone density and it didn’t matter that my bone density test was normal and showed I had good desnity, all because my TSH was slightly suppressed. He wanted me to take this medication that has some serious side effects for someone in my condition, all because of a slightly suppressed TSH because I take Armour Thyroid instead of synthetic.

The same doctor told me that with Adrenal Insufficiency, if I am able to feel good at least 70% of the time, then they are doing a good job. That’s bullshit too. I know people with AI who are running marathons and living perfectly normal lives. So when I tell the doctor that I can’t–literally–even hold my own head up on such a low dosage of  medication, I’m not talking about living it up–I’m talking about having a life, period.

So yeah, fired. I’ll go back to the original doctor who diagnosed the AI to begin with. I liked him. The only reason I changed at all was because I was able to get into this facility as a patient after having the massive PEs and spending weeks in the hospital a few years back when I first got my diagnosis. I thought it would be easier to just keep all my records with one place. Well, that would work if the doctors weren’t so antiquated in their beliefs there. You would think a teaching facility would be more up on the current research and trends. Sadly, no.

I was able to get out of having to do the EMG nerve conduction testing with the needles and all. My doc told me, even if they found neuropathy, the only thing they would do is pump me full of B vitamins and give me neurontin, which they are ALREADY doing anyway, so why put myself through a painful and expensive test if the treatment isn’t going to change? The only thing is, I’m starting to have some weakness, and she did say if the weakness continues, she would suggest I have the test at some point. But at least for now, she doesn’t think I need it. I agree with her, for now.

That test scared the bejeebus out of me, so it’s a big relief to know I don’t have to have it right now.

So the only other medical thing on my mind this morning is the support group I’m in and what it’s doing to me… the majority of the people in that group are eligible for the PTE surgery that is considered a ‘cure’ for those with CTEPH. The majority of people with CTEPH are eligible for the surgery. I am not. It’s hard to read their posts when each one gets confirmation that they are eligible and begins the journey to scheduling and having the surgery. I don’t know if I’ll ever be eligible. My doctor wouldn’t even give me the referral, ’cause he says he knows they’ll turn me down. I did find out I can self refer, and the PHA says everyone should be considered. I think I’m going to ask for consultation and see if they will tell me if they think it’s even possible I might be eligible in the future.

I mean, if I could be eligible, I can then focus on working on the conditions that are limiting me and making it not possible to have the surgery. I would have something to look forward to, something to strive for. Something to DO. It would give me some control over this disease that is slowly killing me. If I’m not eligible, then my focus can change to improving the quality of my life for whatever time I have left, and that would change how I do things.

For example, if I knew having the surgery was never going to be a possibility, then I want back on the higher doses of prednisone. Because if I”m going to die from this anyway, I want to feel good for the time I do have left. But if I’m going to be eligible for the surgery, then I understand the need to work down off the prednisone if at all possible, because not being on pred or being on really low doses for the surgery  is going to be crucial.

Knowing makes a difference… which is why I don’t understand why my pulmonologist won’t talk to me about it. I have an appointment next week with my new pulmo’s assistant. I’m going to be asking her when I go. I need the truth. I need to know where I stand and what the plan for the future is. I need to know if they are on the same page as I am.

I deserve to be able to plan for my future–whatever that future may hold.

Love and stuff,

Michy