I am sick, I am not sick, I am

Pain #TP637

Pain #TP637 (Photo credit: ConnectIrmeli)

I am not sick. I am. I am sick if I feel pain, pain hurts. Sick is pain, not bumping up against walls and tremors. So, I am not sick. Not now. Not yet. You did hear me, right? I am not sick. What happens when invisible illness become visible? When a pink cane accompanies me everywhere? I am not invisible anymore. People see me and give it a thought, “oh, there’s something wrong with HER, I wonder what it is.”

I think the same thing, flatly, without terror, at least today. What IS wrong with me. I have shut down for the most part and if I could stay in bed in my white-flowered pajamas, thin and comfortable, I would do that all day and night. I can’t. My kids are home today for a visit and as most parents know, I would do anything not to scare them or put them through any unnecessary concern.

I am unbalanced, imbalanced. I cannot walk a straight line. My neurologist was cavalier the first time he saw this, in fact he ignored it. Why would he ignore something as strange as that? Maybe because he ran over his 8 minute limit.  I don’t like him. I don’t like a doctor who does not acknowledge emotion, who pretends it is not there. I need to switch. He didn’t want to give me this second MRI but my” huggable rheumatologist” insisted. He is a doctor I respect. A person that you can be proud to call your doctor.

I need a favor, I have asked a friend and she can’t do it. I have asked another friend and I haven’t heard back. I hate asking for favors. Do I ask again or just call a cab? I’m too tired to even make this decision. My room is disgustingly disorganized and I don’t have the energy to clean it but I will try for ten minutes. There is a banana bread in the oven baking for my son for his 24 hour visit, I would have crawled to make that for him, I had to lean on counters but I did it. I just hope I don’t burn it since I am lying down upstairs.

I’m getting very tired. Tired of tests, tired of illnesses, tired of sickness upon sickness piling up on me. This blog is the friend I can always talk to. I do not tell my mother half of what is going on because I don’t want her to worry. Here, I can say anything, I am not seeking pity, just a few minutes of peace of mind. It generally doesn’t work but I give it a try. I have nothing to lose. I cannot hide because I am here, just because I don’t complain does not mean I don’t hurt.

photograph credit to the noted photographer above.

no rights.

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On Being A Patient, Again

I never stopped being a patient, not since my thyroid went out of wack 3 years ago, not since I was told I had Fibromyalgia (and then told it was a “lazy diagnosis”)  Not since the prednisone, the hospitalization for eppiglottitis the 24/7 cough that would not go away, not since I was sent to the Pulmonologist, the ENT  the addition of 5-7 different medications. Not since my stint in the packed emergency room with an overnight stay in the hospital with the worst pain I have ever had in my life.

Here I am again, world! Stuck and pissed off with yet another chapter to my ever-so-boring and relentless saga of pain, chronic pain, auto-immune diseases, Hashimoto’s Thyroiditis, lack of energy and tonight,  a really bad, horrible, disgusted and angry, almost-in-tears mood.

The latest is that my Synthroid level ( TSH) is very, very low, too low said the doctors.  To those in the Club of Thyroid Disorders out there, (COTD- I made it up but it works) I know you will understand. The T4 is perfect. One doctor, the evil endocrinologist (lower case on purpose) sent a prescription (albeit the wrong prescription) in the mail telling me (no, writing me) he was surprised with my numbers but I should reduce the Synthroid medication (buzz word) to 50 mcg. First I was at 88, then 75, now 50???   That’s like telling someone who has the flu, to get up out of bed and do somersaults while standing on their heads, backwards.  I’m down enough people, now this? It makes no sense.

I wrote to my Guru Dr. in the City who handles the type of Autoimmune Disease (Hashimoto’s Thyroiditis) as in***THYROID DISEASE  to tell him. He suggested that my” Endocrinologist” do a simple TRF blood test and he guessed I might have something called Secondary Hypothyroidism ( I know, I could so be on Gray’s Anatomy with the amount I’ve had to learn and remember.)

Here’s the problem. The nasty, dull, mean-spirited endocrinologist (lower case on purpose again) who I am going to DUMP as soon as I find a new one, refuses to talk to me on the phone. Just for a couple of questions. “No, come in”,  he said. “I just want to ask him a question” I pleaded to his nurses “No, come in.”  I’m seething. First of all I have never heard of a doctor that won’t take a phone call for a question (I wasn’t demanding to speak to him at that moment) and that absolutely refuses to return a phone call from a patient. Second, he knows about my Guru Doctor in the city since I have copied him on everything. (Do you think this could be a terrritorial thing?)  Third, he did not believe that I had, indeed, a note from my Guru Dr. to suggesting he test me for TRF (whatever it is). No. What? You heard me. No. No phone call, no question, no way, no how. “It is too difficult to explain on the phone” the nurse parroted. Are you kidding me? I had one question about the blood (yes, in the lab in the office) test and a simple thought: wouldn’t it make sense to test the TRF level FIRST (as my Guru Doctor said) then to start on a regimen of a new medicine that could take 4-6 weeks to kick in? Isn’t that throwing the donkey in front of the carrots? (or whatever that stupid expression is.) Not to mention, I do not want to go back to a doctor that treats me with such disrespect (and he always has). I know he doesn’t know that the fifty dollar co-payment would be hard for our unemployed selves. I understand that, but, a 30 second phone call?

Well, you know what the answer is I’m sure. “No”. So here I am, calling new Endocrinologists (one is on vacation until the 20th, the other does not return phone calls) waiting to make an appointment. Oh dear Lordy, Lordy, it’s July and the doctors (at least the ones I’m trying to reach) are on vacation, and of course you cannot leave a message.

I have that creepy, queasy, angst-ridden feeling in my stomach. What now, I ask? I can’t reach any doctor AND short of sending an “I BEG of you” message to my Guru Doctor (which I will do anyway in the early a.m.) I will be sitting home in a flurry of frustration and anxiety. I will be sitting on my bed, fed up, confused and furious and yes, a little scared too. A little courtesy, perhaps DOCTORS?? Yeah, right.

I feel totally helpless and demeaned. I feel anxious and confused and ignored. Does anyone understand this?  Is this the time for an out and out binge on sugar- laden treats?  Can I run and hide from my anxiety for a few minutes with cookies and chocolate,  and that sweet powerful surge in energy? This doctor says Yes. Absolutely. Starting Now.