May Update

Let’s see, what’s been going on in my life? Well, April was the best month I have had in about six months. I have been walking 1000 to 1500 steps a day instead of the 500 average in December. I have been out of bed for about 9 hours a day instead of the 5 that it was for so long. I’m still housebound, but I’ve been in the garden and tried driving myself to nearby appointments. Best of all, I’ve been upbeat. Just like that… I get some space from the crippling symptoms and my mood brightens and the future seems oh so hopeful.

I’ve been on Prednisone for three weeks now (my feeling better started about two or three weeks before, so I can’t credit Prednisone). As much as I don’t want to be on it, every doctor I see has encouraged me to give it a try for diagnostic purposes. It’s only 5mg, but it was still rough in the beginning. I wasn’t sleeping well and I was grouchy and hungry. Those side effects seem to have abated, but I have others that continue: more facial hair growth (which would be great if it were my eyebrows and eyelashes) (but it’s not), swollen, hot hands and feet and constipation. The latter is the biggest problem. I feel like my bowel is inflamed, swollen and stagnant, which is the opposite of what I would think steroids would do. On the plus side, my skin is much, much better (although I was warned about the Prednisone-withdrawal acne flares by my dermatologist) and my joints seem to be bothering me less in the night (specifically, my shoulders and hips. They still crack and pop constantly, but they’re not as sore).

I saw my first naturopath. Some of you, I’m sure, will roll your eyes and some of you will wonder WTF took me so long! I am in the best place possible to visit excellent NDs because Bastyr University is right up the road, but I’ve held out because my faith has always sat solidly with allopathic doctors and western medicine. But, now, I’ve lost all faith. I told her that, too. I told her I am conflicted: On the one hand, I applied, got in and intended to attend Bastyr. I have researched it and I know the training they give and the scope of treatments NDs employ… And, on the other hand, for reasons I cannot quite understand, I want some big machine to find the problem inside me and some specialist to prescribe a drug that will make it all better and I can go on living. I know better! I know that what happened to me was the perfect storm of genetics, upbringing, lifestyle choices, viral exposure, toxin burden, detox pathway blockage, immune system malfunction, nervous system blitz etc. I know that I need full-body, whole-life help, so I’m not sure why it took me 40 healthcare practitioners to finally see an ND.

Well, let me tell you, I left in tears of gratitude. I needed someone to replace the Good Doctor and now I have the Better Doctor. She spent 3 hours with me. What?! Who does that? She took my history from womb to present. She addressed everything. She had ideas to support my system from all angles: endocrine, digestion, liver, adrenals, nutrients, lymph, circulation and on and on. She said, “Email me any time and, if you are scared or freaking out about a symptom or side effect, call me.” Who does that? She said she wanted to come with me to my endocrinology follow-up to hear what the doctor had to say from the horse’s mouth. No cost. Who does THAT?!

She wants me to try some things that I would normally scoff at, such as castor oil over my liver and high-dose vitamin C, but, what I keep reminding myself is: a multi-vitamin gave you the worst side effects you’ve ever experienced . Your weird pressure-point-restore-circulation physical therapy is the only thing that has helped. So, I’m open to anything. She wants me to come in every week for hydrotherapy. I’m not sure what this involves yet. I’ll let you know.

The clinic gave me a huge discount on the visit and supplements because I have no income and it’s located about 5 minutes from my house, which means I can drive myself on good days. All in all, I’m excited. But, I have a history of being excited by first appointments and disappointed in the long run, so it’s a cautious optimism.

I finally managed to apply for disability. My “rehab counselor” (aka shrink) gave me the name of a lawyer and that’s all I needed because I couldn’t manage to get going on my own. I never spoke to the lawyer, only her assistant who told me what info they needed. I spent a few weeks creating a spreadsheet of all the doctors I have seen, clinic addresses, tests ordered, drugs prescribed and, when the phone appointment happened, she didn’t need anything else (thank god because talking is still so difficult). The hardest part was I got a letter from the lawyer saying they will submit the info, it will take 6 to 8 months for a decision. It will probably be denied and they will file an appeal and if I don’t hear from them for a year or two, don’t be alarmed. I knew this was the case, but it was demoralizing to see it in print. If I had managed to apply or find a lawyer when I left work two years ago (how the hell has it been two years?!? LIFE IS SLIPPING BY!), I’d already be at the appeal court date by now.

That’s about it for now. I’m very busy this month: a teeth cleaning, a new dentist for a new oral appliance for sleep apnea (and it all starts over from the beginning) and follow-ups with my GP, rheumatologist, nutritionist and dermatologist, plus the hydrotherapy and mental therapy appointments… Exhausting.

It’s chilly again here and one of my dogs broke his toe chasing squirrels, so we’re all stuck back in the house being lumps on logs. I did manage to make it to the cemetery on my mobility scooter on that last hot day (thank you, husband, for making that happen). It was glorious.

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Heart Center.

I have an appointment with my GP tomorrow. It’s at 9:30am, which is about 2 hours earlier than I usually schedule appointments so that I am a functioning human being. I don’t even know if it’s worth it to see her. I basically made the appointment because I haven’t seen her in 6.5 months. I am a different person now. Last time I saw her, I still didn’t quite understand how the medical system works. I still sort of thought that doctors would search and help and communicate and dig until they figured out what was wrong with a patient. I still didn’t realise how specialists operate. Even after the first infectious disease doctor said, “You don’t have an active infection” and then, in no uncertain terms, gave me a permanent goodbye. Even after the second infectious disease doctor said, “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms.” In other words, See ya! Even when the chronic fatigue expert spent ten minutes with me after I waited 8 months for an appointment and sent me on my way with directions to exercise read a book about pain, and try Cymbalta. It wasn’t until my second visit to the rheumatologist, that it finally clicked. He had treated me so well at my first appointment. I will never forget he said, “There is something wrong with you. It is not your job to figure it out, it’s ours.” It felt validating and I almost wept. Someone would finally take the burden of this search off my shoulders and figure out why I felt like I’m dying… But that’s not the way it works. When I went to see him again a year later, the first thing he said was, “Why are you here? Chronic fatigue syndrome is an infectious disease.” Ah. Click. Finally I see. Dr. House is only on a tv show, stupid! Specialists spend 15 minutes max listening to your story, run the standard tests, and you’re done. If the tests are negative, you will never hear from them again. And, even if the tests are positive ~ like the time they found two toxic goiters on my thyroid and had to kill the whole lot with radioiodine and I had to figure out from a pamphlet and a bunch of inquiries that were shuffled from one person to another how to get my synthetic hormones and whether I should have follow-up visits with someone ~ sometimes you won’t hear from them then, either.

I had a yearly check-up with my GP 9 days before I was hit by ME. I distinctly remember saying to her that day, “My biggest problem is my neck” ~ meaning the degenerative disc problems in my cervical spine that have plagued me since my early 30s. We talked a lot about my job. I was having difficulty sitting at a desk all day after years of being on my feet. She thought, because of the stress involved, that it might not be the job for me. I remember her saying exactly that: “Are you sure this is the right job for you?” I shrugged and thought, Maybe not. But I still love it. In some ways, I think that sentiment has coloured the treatment I received once I came down with ME. I think a lot of us (my doctor, my boss, my family, and I) thought my problem was caused by job-related stress and lack of sleep.

That is another way I am a different person now than when I saw her 6+ months ago. Now, my awareness of my body and physical sensations are extremely fine-tuned. It is laughable to me (and tragically sad) that, in my confusion during that first year, I was almost persuaded that my sickness could have been caused by 1) bowel problems, 2) vasovagal reactions, 3) stress and anxiety, 4) my pain killers, 5) my birth control pills. When you are scared and in foreign territory, you want to latch on to ANY explanation that is said in a rational way from an expert authority. I suddenly understand how false confessions are coerced out of murder suspects. Maybe you’re right, Dr. E, maybe it’s just IBS. Phew! Even though I had had my share of health problems in my life, I was completely naive about how this medical journey would unfold itself. It is tragically sad and not so laughable that I didn’t trust myself 100%. I was SO SICK. My bowels? Stress? No, not this. Sleeping normally, then swimming in sweat. Running a little cold, then incapacitated by bone-wracking chills. Steady, then dizzy. Confident, then fearful. Strong, then shaky, then weak. Memory like a steel trap, then uncertainty about all details. Aches in my neck, then deep body-wide pain. Occasional headache, then 24-hours-a-day migraine for months. Able to bound up and down stairs, then legs not working. Energy, then none. Working, then housebound. Well… then sick. Don’t doubt yourselves, ever.

So, why am I even going back to my GP? I want to talk about my application for disability. She has known me for years and she should know that, even though I mostly saw her when I had chest infections, I have always been an upbeat, energetic person and ME caused an abrupt and permanent change. I must stay unemotional. The day last year that a few tears dropped in her office sealed my fate as someone that needed therapy and an antidepressant. My chart note says “Stress reaction, emotional.” I did what she said and started seeing a therapist, but 15 months of weekly visits later and nothing has changed. Nothing except I’ve spent 50 minutes each week crying about how I don’t know how to accept this new life and I don’t know how to stay hopeful and calm when my symptoms flare. Which is always.

I’ve cried more in the last year than I have in the 39 years before. I get overwhelmed sometimes with the surety that my husband will reach a breaking point and leave me. Or that I will somehow have to find the strength to leave him so he can have a life and I can be freed from the unrelenting guilt that I carry. The other night, my husband said, “I’m not going anywhere. I love you deeply.” I sobbed: “But you didn’t fall in love with this.” I spat out the word “this”. I said it with a grimace of distaste, as if I were talking about a maggot-infested, rabid rat that was sitting on my chest. And I actually flinched at the knowledge that the revulsion was about myself. I try to stop my brain from doing this. I try to remind myself that I still have value, even sick. But it’s hard now that I have very little interaction with the outside world. I can tell myself a thousand times that I am not the disease and my self is not sick ~ my core is still the same ~ but I don’t really believe it. I sure feel sick at the core. Or, at least, that there are many, many layers of sick surrounding that central self, which is still the me I know and love. But, if those layers rule the body, who really cares what’s in the center? If it can’t express itself or figure out a way to thrive, what’s the point? How do I enrich the world when I rarely laugh, can’t talk for more than an hour each day, have nothing interesting to say…? And how oh how do I find joy in my own life when everything I enjoy takes energy that I simply don’t have? I have to find joyful activities that can be done lying down with my eyes closed, day after day?

Anyway, my husband pointed to my heart and said, “I fell in love with what’s in there and that hasn’t changed.”

I thought, Yeah, it has. But, I admit, I felt another renewed resolve to fight. If not for myself, then for my husband and the person with whom he fell in love.

sarah and dave 5