June JuJu

I have had a bad backslide this month. It started with headaches in the first week of June, then bowel inflammation and bloating, then weakness, exhaustion and a constant buzzy/numb head… On the 10th, I had one day of terrible pain in all my joints: hips, shoulders, hands, wrists. On the 11th, I had a histamine reaction with my throat spot getting very itchy for the first time in ages, coupled with the internal fire that I call flushing. On the 13th, I had unusally bad blood pooling and swollen hands and feet. On the 14th, I woke up with the worst muscle pain I have had in probably over a year… full-body, every movement hurt, muscles I forgot existed… and it sent me into the emotional doldrums: I can’t do this anymore. What’s it all for? I can’t live like this. My whole life was useless. I never had a family, I never made a difference in the world, I worked and studied and worried for nothing because it was all for nothing and useless and life is meaningless blah blah blah… That was brought on by seeing an old friend’s holiday photos of beautiful people gallivanting in the sun with their beautiful children and their happy, youthful I-haven’t-aged-a-bit-in-the-last-23-years smiles. One should never look at Facebook when they are bedbound in extreme pain and it’s summer.

On the 15th, I realised the deadline for Social Security to receive my disability paperwork (work history and function report) was the next day and I panicked. I’d read the letter wrong and thought I had another week. It should have taken a week to do, but I had to cram it into 24 hours. They write on the form that it should take about an hour to fill out, which is hysterical. It took me about 10 solid hours. I had to research the jobs I had and how much I was paid back to 1997! I had to describe every position I held. I had to estimate things like how many hours a day I stooped, bent, knelt, sat, walked etc. For each position! Seriously? How many hours a day I bent?? For fuck’s sake. For all my restaurant jobs, it was fairly easy: I walked all day, every day. But, they wanted to know things like how many hours a day and days a week I worked. Well, some weeks it was 3 shifts, 10 hours a day and some days it was 14 hours a day and 7 days a week (when we were opening restaurants). I was that person who was writing in tiny letters in the margins, giving explanations and qualifiers that will never be read. They’d ask something like, “What did you do all day in this job?” and give me one line to answer. What didn’t I do all day? That would have been easier to answer. As COO, I did everything. They wanted to know how heavy objects were that I lifted: “What was the heaviest object you lifted? How much did the objects that you lifted most of the day weigh?” I wound up texting my friend from my old job: “How heavy do you think 3 of those dinner plates loaded with food were?” We were blessed with the heaviest plates in the industry and the heaviest food. Tex-Mex doesn’t leave any blank room on the plate.

For the function report, they asked the same questions different ways for 12 pages. Maybe they wouldn’t be the same answers with other illnesses, but with this one they are: “How has your social life been affected?” “How have your cooking habits changed?” “What household chores can you do?” “How have your hobbies and past times changed?” “What can’t you do now that you used to be able to do?” Over and over: I can’t do any of it anymore. All of it has changed. I was excited when I got to the question about dressing myself: Yes! Yes, I can do that!

So, the 15th and 16th turned into the familiar nightmarish feeling of deadlines and all-nighters. Oh, how many times did I leave all my assignments and studying to the last minute in college. It was my M.O. Always was, even in secondary school. I stayed up all night studying for my leaving cert (the final exam at the end of high school in Ireland) maths exam and then took a nap in the early hours of the morning and slept through it! (Side note to any young ones reading this: I thought the world was going to end. I was a perfectionist even then and, when they wouldn’t let me retake my exam, I thought my future was lost… I’d never get into the colleges I wanted to attend… it would be a black scar on my record for evermore… But, guess what, it made no difference in my life. You’ll be ok, no matter what the outcome of the leaving or the SATs or any of it. Life is much, much more.)

I put ear plugs in and sat secluded for hours upon hours trying to fill out the paperwork. My brain wasn’t working and I had to get my husband to help (“What symptoms do I have, honey?” “What hobbies do — did — I like to do?”). My hand was cramping and my vision was pretty much gone, so I went to bed and finished it the next day in a complete stupour of pain and nausea and bricked-ness. The SSA said that it was okay that it was late. I called 3 times to verify that and they kept saying it’ll be fine, so fingers crossed I didn’t screw myself.

On the 17th, I awoke in the middle of the night with an evil migraine, which is still lingering today. I have been chilled and achy and wired the last few days, trying to figure out if it is something I ate that caused the joint pain, muscle pain and migraine — is it because of all the histamine foods I have been adding in? — or is it just the unrelenting disease and the stress and overworked brain? Last night, I couldn’t get to sleep until 1am and I awoke at 5am with my heart galloping from a nightmare. I’ve been wide awake with my brain on fire ever since. Can’t deep breathe or meditate, can’t concentrate or be productive, can’t jump out of bed and tackle the day. Just have to lie here, my body a bee hive of activity and my eyes barely able to focus.

Chronic illness gods, I’m sorry I mentioned that something was working. How dare I?! Please give me some respite. I’ll be good.

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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.