Doctor Love/Hate

A few weeks ago, I had the follow up with the rheumatologist I saw in January. The one who came highly recommended by multiple doctors I’ve seen. The one who spent over an hour and half with me at our initial appointment. The one who wrote the most thorough and accurate notes on my history and even sent them to me. The one who ordered spine x-rays, a DEXA bone scan, blood work for inflammatory bowel disease and who did a quick ultrasound of my shoulders. The one who knew about the pretty much unknown mast cell activation disorders and even knew most of the tests to order. The one who wrote a book called, “You Don’t Look Sick.” … So, you’d think he’d get it.

At one point, he asked, “Why are you in bed so much?”
I wasn’t sure how to answer. This was my second appointment in a row; I’d previously spent a useless hour with my therapist, not having anything to talk about and feeling out of place. Maybe my brain was ticking over even slower than I had realised.
“Because I’m sick…”
I thought he understood my illness because of the thorough chart notes, but I’d have to reread them. Maybe he didn’t understand the key part about ME and post-exertional malaise (second worst description of anything, ever, after chronic fatigue syndrome). Maybe he didn’t quite get that my battery dies very quickly and, if I push through, I’m in a world of hell and the battery never quite fully goes back to where it once was.
He said (and this is a direct quote), “If your hope for the future depends on getting disability, you’re not going to get out of bed.”
And then my brain blew up.

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I know many, many people have dealt with this sort of thing before — this blatant skepticism about their illness — but I hadn’t. Nobody had ever questioned me to my face. I didn’t really hear anything else he said after that because I did a white-out with fury. This manifested itself with me bursting into tears, unfortunately. I told him I wanted to make it clear that I wasn’t in bed to try to get disability. He said something along the lines of: “It may not be that you’re a malingerer [I remember that word clearly], but that you subconsciously are staying in bed because you need the money.”
Wow.
I was raging. After waiting two years to apply for disability in the desperate hope that I could go back to work… after going from a happy, high-functioning person to practically an invalid… it was too much to think this might cross somebody’s mind. Why would I want to give up my whole life to get 1/10 of the money I used to make? I cried the whole way home. I kept thinking about it and crying the whole evening. Granted, I was premenstrual, but my anger can’t come out in yelling and stomping anymore, so it just bubbled out in tears. Would he have said that if my husband were with me? Would he have said that if I were bedbound with cancer?

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There was slight vindication when he told me I had to try increasing my steps and I told him I have: from 500 in January to 1500 now.
Then he said I had to try “bicycle yoga”, lying down and I said, “I do! I try to do yoga poses and gentle stretches whenever possible.”
Then he said, “You need to come in here with a list of your current symptoms, your meds, your questions and concerns.” I waited for him to finish drawing an example of the page he wanted me to write and then I told him: “I did — it’s on the back of that sheet of paper.”
“Oh, I didn’t look at that,” he said. “A+.”

Amazingly, after this conversation, he told me my clinical diagnosis was mast cell activation syndrome (MCAS) and prescribed Cromolyn.

I smoldered for a week and then went to see my therapist who works in the same clinic and has known Dr. O for 37 years. I let loose on him. I railed for a full 45 minutes and was completely supported and validated. He said he’d seen it happen before and that, typically, when Dr. O is called out on his behaviour, he is blind to what he did and remorseful. He read me the notes that Dr. O had written and they were great — he wrote that he wanted to treat me for MCAS and also continue to look at inflammatory conditions, that I wasn’t depressed… There wasn’t a mention of ME in the notes and that’s how I wanted it. I went to him in the first place for his diagnostic talents, to have someone search for other possible answers. So, I’ve decided to give him another chance. My therapy session completely calmed my outraged soul and I’ve let it go. I think I will write Dr. O a letter when I feel up to it, explaining professionally why he was bone-headed and offensive. I’m actually looking forward to seeing him again, so I can be the calm, assertive person I normally am with doctors.

So, about MCAS: I haven’t dealt with scary symptoms (anaphylaxis, tongue swelling) in years and I react terribly to most medications, so I’m hesitant to start treating with mast cell stabilizers, histamine blockers or other anti-inflammatory drugs besides Prednisone. However, I wonder how many of my daily symptoms could be caused by mast cell problems (GI issues, bowel swelling, headaches, fatigue, brain fog, sinuses, pain etc.), so I’m also excited to have this diagnosis and the treatment options available. There’s also a teeny tiny part of me that whispers, What if your only problem is MCAS? What if mast cell problems caused everything from anaphylaxis until now? I don’t believe that — of course it’s multifactorial and involves many different pathways: immune, neurological, endocrine, gastrointestinal, vascular — but, there’s still a seed of excitement that something might make a difference.

In Search of Severely Ill, Bedridden ME/CFS Patients

Reblogged from Sue at Learning To Live With CFS:

I saw this announcement in the New Jersey CFS Association’s newsletter:

“Dr. Lapp Seeking Severely ill/disabled patients
From: Hunter-Hopkins ME-Letter Sep 2013
Dr. Charles Lapp:

We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (cwlapp@drlapp.net ) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!”

Dr. Lapp is one of the top ME/CFS experts in the world, so this sounds like a fabulous opportunity for patients who can’t normally get out to see any doctor, let alone one of the best in the world.

In addition, responding to this initial survey will help the CDC and IACFS/FM to understand how many of us are out there, unknown and uncounted. Privacy will be protected, as they only want initials and location as minimum information.

If you or someone you know is severely ill with ME/CFS, please contact Dr. Lapp at the above e-mail to at least get counted and maybe get some long overdone medical attention, too.