Going to California

After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or waterfalls or mountains, my longest excursion being a 45-minute journey to a doctor out of town, I’m going to California to see Dr. Chia.

I made the appointment months ago after rereading No Poster Girl’s advice for the newly diagnosed. I’ve seen 40 healthcare providers in Washington and really, truly feel that the only substantial help they have been is ruling out brain tumours and cancer. Countless visits, horrendous amounts of money and unimaginable energy expenditure… all wasted, unfortunately. Although, my physical therapist has helped my pain but, alas, I must stop seeing him after Monday because my private health insurance coverage ends.

I based my decision to see Dr. Chia mostly on geographical proximity, assuming that we would have to drive wherever we went. His practice is in L.A. I also considered Dr. Peterson (Reno), Dr. Kogelnik (San Francisco) and Dr. Bateman (Salt Lake City). The latter would probably be my first choice, but it seems she really isn’t taking new patients. I battled between Dr. Kogelnik and Dr. Chia, but decided on Dr. Chia mainly because I knew more about him. I have followed my friend Patrick’s experience with Dr. Chia closely, have read Christine McLaughlan’s articles on Health Rising, and have watched all of the ME/CFS Alert video interviews with him.

In a nutshell, Dr. Chia is an infectious disease specialist who believes enteroviruses are at the heart (or gut) of ME/CFS. I will never forget reading Patrick’s account of his ME onset. He said he had surfed at a dirty beach, became ill a few days later, recovered and then got the Tdap immunization and, 5 days later, crashed with ME and never recovered. I swam in a lake in Virginia, came down with a GI illness a day or two later, recovered and then got the flu vaccination and, 11 days later, had acute-onset ME. We had such similar etiologies, although, I believe Patrick was otherwise healthy and, in my case, these came on top of a plethora of other issues such as working too much, never resting, lots of dental work, lots of traveling, bronchitis, vasovagal syncope, angioedema, anaphylaxis, unknown detox issues, IBS-C blah blah blah. But I knew the diarrheal hell was the penultimate cause and the flu vaccination was the shot that broke my immune system’s back. So to speak.

I was in such bad shape last December, I didn’t think there was any chance of my being able to keep this appointment. Five months flew by and my husband and I hadn’t discussed the logistics of the trip or renting an RV or whatever (I don’t even think he knew I had made an appointment), but, before I called to cancel (because, seriously, who goes to California to see a doctor for an hour?), I asked the good people of Phoenix Rising whether they thought I should do it. They were incredibly supportive and answered with an overwhelming YES! Uh oh. Really? But, at this stage, I’d have to fly. I assumed I’d never fly again. I don’t know what a flight would do to my symptoms, let alone the whole trip. So, I asked my family what they thought and they answered with an overwhelming yes and, not only that, but they all offered to help in so many ways: come with me on the trip, stay in my home to watch the dogs, research rentals, help with money, accompany me to the appointment, donate miles for a plane ticket etc. I was flooded with love and encouragement and, suddenly, for no other reason than I wanted to ride the wave of excitement, I decided to go. If not for Dr. Chia, for me. To know that I could leave this house. To create new memories — even hard-won ones — that aren’t these four walls, this bed, this garden. The truth is, I’m terrified and I know enough about Dr. Chia’s treatments to know that it may be a one-off visit and it will probably be a dead-end. But, I’m still going to do it. And I’m going to close my eyes everyday until my departure date and envision safe travels with stable blood pressure, steady legs, no vertigo, no headaches, comfortable body temperature, no chemical or food reactions, no collapsing or swelling or bowel issues, and good sleep. I’ll write more details in my next post.

Caregiver, caregiver, give me some care, take me somewhere, help wash my hair!*

*Sing to the tune of Matchmaker. Yes, this is how I pass the time. I have multiple verses. 😉

This is day 8 of my husband’s cold. You might remember how paranoid I am of catching a cold or, god forbid, the flu. It has been exactly 2 years and 4 months since I had a cold and bronchitis (colds never stayed in my head ~ they always went to my chest) and I find myself grateful and, also, sad, knowing that a few months after that last cold my immune system turned on permanently. I read about other people with ME/CFS suffering with viruses and I knock on wood, cross my fingers, spit over my shoulder, pull on my earlobes and say toba toba to protect myself (yes, really. That’s not excessive, is it?)… But I also feel a stab of jealousy because that probably means their immune systems are healthier than mine ~ that they have calmed down enough to allow a virus to infiltrate the fortress.

That’s not to say I want to get sick. I don’t even want to test it. When my husband gets too close, I shoo him away. When I have to walk past him, I pull my shirt up over my nose. It’s comical, as if he horribly reeks. And I am an utter nag:

“Can you PLEASE cover your mouth when you cough?”
“Have you washed your hands?”
“Please don’t breathe near me. Just stop breathing.”

At least I say please.

He hasn’t taken a day off of work and, even on the weekend, he was in the garden, raking leaves and doing winter clean-up. I find myself fretting about him – not wanting him to push himself when he’s sick. This has probably been the most stressful year of his life because of my illness, plus he has had more landscaping work than many recent years and his job is all physical labour, out in the elements. I know I can’t implore him to spend a day on the couch, sipping Lemsip and chicken soup. It’s not in his nature. I’ve never seen him have a day like that. On Sunday, as he was in and out of the house doing chores, I said, “I really wish you’d rest.” He said, “This is resting.”

My husband could never get ME, though. That’s not in his nature, either. He sleeps well, never takes even a painkiller, he can eat and drink anything, can handle extreme weather… I’ve always had the sensitive system ~ I would love to have skiied in the winter, but hated the thought of cold and snow. I would have loved to lie on a beach all day in the summer, but have always wilted in the sun or become faint and headachy.

I’m convinced the main difference between us, though, is that he doesn’t care – in a good way. He isn’t a perfectionist, he doesn’t worry, he doesn’t feel guilty. I’ve always been an over-achiever. I want to do everything and I want to be the best at all of it. I’m turned into knots because there are tumbleweeds of dog hair all over the house and I haven’t sent thank you cards for the birthday gifts I received 6 months ago. I am guilty about my dog’s anxiety and sad that I don’t feel attractive anymore. I beat myself up about the sugar I can’t seem to kick and the money wasted on supplements that I couldn’t tolerate. I worry that I’m a bad friend and I’ll be forgotten and I haven’t made my mark on the world yet. My husband is happy to never socialise and doesn’t think twice about what people think of him and seems to always be perfectly content (not counting the last few years).

Yesterday, after he had worked, gone grocery shopping, gone to the pet store, picked up my prescriptions and cleaned the kitchen, I tentatively reminded him that the dogs need baths and my bedding needs to be washed and I’d really love help making my granola and detox soup (more on that later) and… if it is at all possible… we really need to hoover sometime…. I whispered this last one as I slunk out of the room and around the corner, out of eyesight (notice I still say “we” because I can’t bring myself to say, “You need to clean the house.”)

All this on top of his cold. Caregiving sucks. But I am lucky and very thankful to have one of the best caregivers and husbands out there.

Caretaker, caretaker, take care of me, stay by my side, help fight M.E.!

Cold War

I’m tempting fate talking about this, but it has been exactly two years since I have had bronchitis and/or a cold (they usually went together for me). I would say, in my old life, on average, I used to get a cold about once a year. I never paid much attention, though. As I’ve said before, it was never a big deal to get a cold and most restaurant employees would have to be on death’s door to miss a shift. I would joke that I might faint or go into anaphylactic shock or grow thyroid goiters, but I wouldn’t catch a cold.

Once I got sick with ME/CFS, I went through my medical records with a fine-toothed comb, hoping to find some clue to solve the mystery of my illness ~ that’s why I know the exact dates of my last cold. I had returned from Ireland a few weeks before (I think now, will that be the last time I am there?) and made an appointment with an allergist to ask about my eye and tongue swelling which had been going on during my visit home, plus a bad episode of pre-syncope. He had diagnosed me with autoimmune angioedema and urticaria by injecting my own plasma under my skin and watching a HUGE welt emerge. Great, I love being allergic to my own blood.

I then worked 11 days in a row and, as the weekend arrived, the bronchitis hit. It lasted two weeks and, although I finally went to the doctor, I didn’t take the antibiotics or steroids she gave me and I didn’t take any days off work. My father visited over the weekend that the infection was tapering off ~ we had a lovely time ~ and then I worked a few more weeks before flying to Virginia and getting sick with viral gastroenteritis that landed me in the ER, getting fluids. A few months later, the flu shot triggered this new life. No wonder that vaccination was the straw to break my immune system’s back! This is the message I want to get out: PAY ATTENTION TO YOUR BODY! HEED THE WARNINGS!

Anyway, there are very thin, very pale silver linings to my situation and I search for them daily, in an endless quest for gratitude and acceptance. This week I think, Two whole years without a cough or congestion or phlegm or wheezing! I try not to think, Yeah, but who cares when I’ve had endless flu for 21 of those months? I would prefer to be sick with bronchitis every day of the year than live with a disease that does not allow you TO EXPEND ENERGY. But I don’t go there. I know one day I will have to contend with a cold on top of ME and, until that day comes, I am going to be very, very grateful that my lungs and nasal cavities are clear.