{"id":671,"date":"2014-09-04T03:00:03","date_gmt":"2014-09-04T03:00:03","guid":{"rendered":"http:\/\/michelledevon.com\/?p=671"},"modified":"2021-01-06T03:00:33","modified_gmt":"2021-01-06T03:00:33","slug":"cold-sweat","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2014\/09\/04\/cold-sweat\/","title":{"rendered":"Cold Sweat"},"content":{"rendered":"

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\u00a0sipping hot green matcha tea<\/a>\u00a0(it\u2019s good for you!)<\/p>\n

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\u2019m soaked like I just got out of the pool. This is insane. I don\u2019t understand why this happens, but that\u2019s how it is. When the meds start wearing off again, I\u2019ll start getting stiff and cold again.<\/p>\n

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\u2019ve been doing some reading about it. I\u2019m now wondering if I should have gone and done the test. It might explain the pain I talked about in\u00a0my last blog post.<\/a>\u00a0It might not. But it might.<\/p>\n

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\u2019t know.<\/span><\/p>\n

Oh, that\u2019s not true. That\u2019s 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\u2019s just, the one thing I\u2019ve been dealing with that makes me FEEL the worst hasn\u2019t even gotten an answer.<\/p>\n

Isn\u2019t 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\u2019s supposed to get Mad Cow Disease from a porcine supplement, I don\u2019t 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\u2019t 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.<\/p>\n

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\u2019s 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\u2019t\u2013literally\u2013even hold my own head up on such a low dosage of\u00a0 medication, I\u2019m not talking about living it up\u2013I\u2019m talking about having a life, period.<\/p>\n

So yeah, fired. I\u2019ll 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\u2019t so antiquated in their beliefs there. You would think a teaching facility would be more up on the current research and trends. Sadly, no.<\/p>\n

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\u2019t going to change? The only thing is, I\u2019m 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\u2019t think I need it. I agree with her, for now.<\/p>\n

That test scared the bejeebus out of me, so it\u2019s a big relief to know I don\u2019t have to have it right now.<\/p>\n

So the only other medical thing on my mind this morning is the support group I\u2019m in and what it\u2019s doing to me\u2026 the majority of the people in that group are eligible for the PTE surgery that is considered a \u2018cure\u2019 for those with CTEPH. The majority of people with CTEPH are eligible for the surgery. I am not. It\u2019s 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\u2019t know if I\u2019ll ever be eligible. My doctor wouldn\u2019t even give me the referral, \u2019cause he says he knows they\u2019ll turn me down. I did find out I can self refer, and the PHA says everyone should be considered. I think I\u2019m going to ask for consultation and see if they will tell me if they think it\u2019s even possible I might be eligible in the future.<\/p>\n

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\u2019m 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.<\/p>\n

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\u201dm going to die from this anyway, I want to feel good for the time I do have left. But if I\u2019m 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\u00a0 is going to be crucial.<\/p>\n

Knowing makes a difference\u2026 which is why I don\u2019t understand why my pulmonologist won\u2019t talk to me about it. I have an appointment next week with my new pulmo\u2019s assistant. I\u2019m 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.<\/p>\n

I deserve to be able to plan for my future\u2013whatever that future may hold.<\/p>\n

Love and stuff,<\/p>\n

Michy<\/p>\n","protected":false},"excerpt":{"rendered":"

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