Medical Updates – not important

SORRY to the people who come here for book-blog. I didn’t want to have to tell the story of my latest adventure in the nine month slog through medical mysteries to a bunch of people so I’m posting it here. Feel free to skip. After nine months of it, I wish to hell I could just skip it too.

Okay my friends, today was another in the misadventures on Charlie’s medical journey.

The day started badly because I was up every hour last night, gave up at 4, my stomach was a mess again today, but I had determined a few weeks ago I would not skip the gym no matter what. Well, I changed my mind today while at the gym. Long story I’m not telling but it became clear that I am delusional about my age and abilities and place in the world. I think I’ll be skipping the gym for a while.

When I got home, I waited until 9 when the rheumatologist’s office opened because I had not gotten a call reminding me of appointment, nor gotten anything in the mail (the one who was canceled because of my insurance coverage — or lack — had sent a 35 page questionnaire) and I called them, explained I wanted to verify I had an appointment at 11:15. The fellow said, “Yes, didn’t you get my message?”

No, I didn’t.

“I told you that you need to bring your lab results or have your doctor fax them.”

I never got that message.

“Isn’t your number 301-471-1251?”

No, it isn’t.


I gave him my real number and he said I had to have the lab work, doctor notes, etc. I explained that I could NOT drive to Hagerstown, pick them up, and get to Gaithersburg in time for the appointment. And that the doctor had said WEEKS ago when appointment made that they would send them. Keep in mind, this is the doctor who gave them my wrong number — or, they took the number down wrong — who knows.

SO,  called Hagerstown and explained and asked if they had ever sent the info as they’d said they were going to. Turns out they had not. This information after I’d been on and off hold for fifteen minutes. SO, she then comes back on line and says, “Well, we’ll fax it now, but for future reference, you need to come in here and sign a release — but we’ll do it this time because you have an appointment.”

I semi-lost it. I said, “YOU made the appointment. YOU told me you’d send the information and did NOT ask me to sign anything. I’ve already SIGNED a release there allowing you to have and disseminate and get my information — and if that was NOT enough then you should have CALLED me and told me IMMEDIATELY that you were NOT going to do what you’d TOLD me you were going to do — AND I MIGHT ADD, this was all after you had first referred me to a doctor who did NOT take my insurance despite specifically saying you had checked that they did thus putting this appointment off by a month.”

She hung up on me. I assumed the info would not be sent. But, it was.

I get there. Fill out more forms. The doctor comes out to get me. She is very nice but it turns out the reason I could get in on such short notice is because she just opened this practice. Every patient there was new.

Needless to say, as with every other doctor to which I’ve been, she hadn’t read my file. Had no idea the history or why I was there. In her defense, she hadn’t been SENT the file.

SO, I had to explain everything. English is not her first language. We had some difficulty understanding one another. She asked me the same thing over and over — and like the dermatologist had at first, she fixated on thinking the Wellbutrin had caused the rash — I had to explain three times before she finally got it that the rash started BEFORE the Wellbutrin and was why I originally WENT to the doctor NINE FREAKING MONTHS AGO. The day after the inauguration. By which point I had been crying, daily, sick with fear and horror since November 9. TWO FREAKING MONTHS.

She then proceeded to read my file OUT LOUD while I was sitting there. She does NOT think I have lupus. She said they did NOT do all the tests they should have if they thought I had lupus. She said she doesn’t think they should have ruled out cancer yet. She said they were wrong to tell me to stop taking Vitamin D while on Plaquenil, that she has had plenty of patients on Plaquenil who also take D.

Then she starts with the, “So, you don’t have Hepatitis, any of its forms, no HIV, almost all your blood tests are normal.”

I have been told MANY times what I do NOT have, and I am grateful I am as healthy as I am. Really, I am. BUT I’VE HAD THIS RASH ALL OVER MY BODY FOR NINE MONTHS and now, the last few, on and off muscle issues, joint pain, return of digestive problems, concentration issues. I mean — THERE’S SOMETHING WRONG.

She explained to me why she doesn’t think it’s lupus. She tested my muscle strength — resisting her push/pull — uhm, SHE’S TINY, lol, I could have lifted her.

She too, like EVERY OTHER DOCTOR, asked me over and over, “And it doesn’t itch?”


Anyway, she was clearly stymied, too. She wrote up an order for 30 more blood tests and a chest x-ray and said get those done and come back in a week. BUT HERE IS THE TOPPER — she said:

“If I were you, I would get to Johns Hopkins and start in the dermatology department because this doesn’t look or present like anything I know or your other doctors have known.”

My insurance BARELY covers her. I doubt very much it’s going to happily send me trotting to Hopkins.

She said something about I don’t have inflammation of cells from biopsy results but I do have separation of cells or something — I have no idea, by then when she’d freely admitted she had no idea what it was and was going to run all the blood tests over and some more and ADDED BONUS some urine tests, too, and I had quit listening.

She also said, “Your blood pressure is a little high.”  It was 140/90. It is USUALLY 120/80 but at every doctor visit it soars. I told her this. She said, “Yes, you’re probably tense with all this.”


Look, she was perfectly nice. I’m sure she is probably a good doctor. And I’m near sure that no one is ever going to be able to tell me what I have.

So, that’s it. I have an urge to get into my bed, under the covers, and not come out for a few days — but, I can’t. Which is probably a good thing. But, I will have some free time because I am not going back to gym — for now — I need to re-evaluate many, many things and consider carefully the delusions in how I see myself and what the hell I’m doing and why I have wasted my life.

One good thing — I was able to pick up my copy of Hillary Clinton’s WHAT HAPPENED at Curious Iguana, and just walking in there made me feel whole and healed for a few minutes.

Love to you all —

not-so-miracle Charlie

6 thoughts on “Medical Updates – not important

  1. Don’t get discouraged, although that would be entirely understandable. Sometimes the diagnosis, putting a name to the beast (which is what we NEED), takes years. Meanwhile, doctors will treat the symptoms as, one by one or in clusters, they emerge. Try to control what can be confirmed. It’s a maddening process. Don’t squander your strength on worry. Hoard it for the bad days. Chronic illness makes people so fucking much tougher than they ever imagined they could be. Others have done it. You will do it. Tip: watch that you don’t start grinding your teeth unconsciously with frustration, especially while sleeping, which causes killer headaches. It happens. Keep your jaw loose. And your spirit indomitable.

  2. Hi, have you heard of Sezary syndrome? I have a friend who finally got diagnosed with that, it sounds kind of like what is going on with you? She is getting treatment now and doing great. Love and peace.

    • Thank-you for your comment. My blood tests have — so one set of doctors say — ruled out the cancer option; my T-cells and white blood cells and all else are normal, and the rash neither itches nor protrudes in any way, not scaly, etc, it is merely a discoloration which — unlike Lupus rash — fades when pressed. A mystery, as everyone keeps saying.

  3. Mystery illnesses are the most debilitating of debilitating illnesses. Everyone says one is brave when one has no choice but to soldier on. But you are brave and you are a miracle and I’m so sorry you have to go through this.

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