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Update…

Just an update: I am on day 48 of the elimination diet, day 17 of no supplements and day 9 of the official two-week wash-out period. I feel awful. I feel like I have a fever. I feel like I have the flu. I feel like my lungs are full of black smoke. I feel like my brain is inflamed. It hurts to move my eyes. My neck is constantly painful and my head started to hurt very badly last night. I need a pain killer that doesn’t cause me respiratory distress. I cannot drink black tea at all anymore. One of life’s last pleasures taken away. I am not eating any aspartame or Splenda. What I continue to take is my probiotic, fiber, Colace, inhaler, birth control pill, antihistamine eye drops and nasal spray, tylenol when I can’t stand the pain and once in a while some vitamins. I think, during this last week of the wash-out period, I will try to hold off on as many vitamins and meds as possible. Who knows? The B-complex vitamin could be causing my headaches. How do I figure it out?

I’m still not leaving the house, I’m still so much worse than I was a month ago. I haven’t been able to do my laps around the house. My doctor thinks I should get a brain MRI and a tilt table test, but I don’t want to do either one. Basically, I’m scared of everything. I now live my life trying not to make anything worse. After being out of work for five months, I’m ready to tackle the disability mountain. It could take years or I may not get it at all. I am scared of losing everything. Have I mentioned that I cannot believe this has happened to me? I would give anything to feel normal again. ANYTHING. I am still in complete disbelief that someone won’t find the one thing to fix. I’m going back to the infectious disease doctor to ask about things I might have caught from critters my dog caught: birds, squirrels, rats… Grasping at straws.

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Forces pulling from the center of the earth again…

My Mother, in an effort to give advice on things that could help my mood and mental fortitude, pointed out that there is never music playing in the house and reminded me that my number one rule of life, written in fading marker on an A4 page taped to her kitchen wall, was: NEVER BE WITHOUT MUSIC. I glowered at her. “I’m too exhausted to go downstairs and find a cd.” “It might help bring some joy back into your life”, she suggested. I went back to grimacing silently in pain.

A little later, she tried again: “You could even listen to music on your phone?” “Yeah, I do, but it just makes me emotional and I’m trying NOT to be emotional. Every time I’m upset, my symptoms get worse. Every time my symptoms get worse, I get more upset. So, I’m staying away from music.” “Not all music will make you upset…”, she said. I think I growled in reply.

Four hours later, I’m alone in the house. I go out to the front porch and watch the warm, beautiful October day. I realise I haven’t actually listened to any music since September 13th when I was at the dog park feeling so good, before the Crash Of The Year. So, I put my headphones on and plugged into my “Guilty Pleasures” playlist. It’s the poppy or hip-hoppy, beat-heavy, fun stuff that makes me feel empowered — like I can do backflips, like I’m one of the stars of Grease/Fame/Glee, like I’m young and strong and athletic. And then… I was smiling. I was swaying. I was elevated. And, even though I knew I couldn’t, I was itching to run, to dance, to sing at the top of my lungs, to compete in the Olympics… And I had the thought: Fuck you, disease. I got this. You think a little pain and exhaustion is gonna do me in? You think daily flu will break me? I’m made of sterner stuff than that. You don’t get to ruin my life. I’ve got nieces and nephews to watch grow up. I’ve got dogs that need to be played with.

It feels like weeks since I felt a little bit of that strength, confidence, happiness. Mother always knows best.

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Welcome Back… Your dreams were your ticket out.

Welcome back night sweats, crushing headache, terrible spinal pain, and debilitating exhaustion. I didn’t miss you at all, but you decided to return anyway. Oh, and you brought pulled muscle and despair with you. Excellent! I was wondering if they had perhaps gone for a while, but I guess not ~ just a quick one-and-a-half-day jaunt away. Well good, I almost remembered how to laugh. I almost remembered what it’s like to have a normal conversation without grimacing, deep breathing or being distracted by pain. I almost enjoyed the taste of food. I almost got to have a meal with my family without it being a gargantuan effort to drag myself upright, raise my eyes to meet theirs and hear what they were talking about. Almost. But not quite.

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Wash-out Period… Day 4

For the last 4 days I have only taken my thyroid hormones, fiber, Colace and calcium, my inhaler (why can’t I breathe?!), antihistamine eye drops, nasal spray and birth control pill. I figure these are things I will have to take regularly, so they don’t have to be omitted. A few days ago, I added back in peas in the form of soup and yesterday I had sweet potato chips. Otherwise, my diet is still no-everything. I still haven’t decided whether I will add back in grains, dairy etc. over the next two weeks. I probably will, but it’s hard to undo the strictness of what I’ve been doing the last month, if you know what I mean. When I commit to a diet change to see if it helps, I really commit.

I seem to be having a heightened sensitivity to my tea in the mornings. I used to drink 3 large mugs of black Irish tea, steeped for about 10 minutes each time. I cut that down to 2 a while ago. Then, about a month ago, I cut that down to 1 steeped, 1 not steeped. Now, it seems I can only handle 1 big mug, not steeped at all or my heart threatens to burst out of my chest. I also stopped using my sweetener today in case my body has decided to reject it after all these years. Lyons tea, unsteeped, unsweetened, with soy milk is not tea at all. Another one of my pleasures down the drain. Really, without booze, wine, tea, pasta, bread, popcorn and ice cream, what joy is left in life?

Yesterday was one of my best days in a long, long time. It wasn’t great ~ still not back to the energy I had when I was able to go to the dog park ~ but, I was talking and laughing with my family, allowing myself to be animated. The pulled muscle in my lower back felt much better, so I even walked around the house 4 times: 400 steps. I hit a big brick wall at about 8pm. My muscles filled with lead and I felt like I couldn’t keep my head up. I lay in bed until almost midnight, too tired to sleep. One time my new phone just froze…stopped working…couldn’t be turned on or off. The guy at the store said it was “bricked”. That’s exactly how I feel when I hit a wall. Bricked. Can’t sleep, can’t speak, can hardly move. Just BRICKED.

Last night, I got about 7 hours sleep, which has been typical since I went off of the naltrexone. I didn’t have night sweats (!!!) and this morning, besides extreme stiffness, sore throat, lungs feeling torched and my skin thinking I’m 15 again, I’m doing okay (!!!). I asked my brother, “Why did you drag me out dancing last night in 5-inch heels and make me smoke a whole pack of cigarettes?” It feels worse than that, unfortunately, but it’s nice to pretend that it’s a temporary result of a night on the town.

It’s wonderful to have my Mother here. She does my meditations with me and talks to me when I’m in bed in pain or too tired to do anything but slur. It makes this journey much less lonely.

I’m grateful for the piano music that surrounded me my whole childhood. My Grandmother and Mother both played and now, when I hear it, I am soothed and at peace.

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PLEASE, please vote for $150K in funding for the new chronic fatigue clinic in Vancouver!!

PLEASE HELP THIS CLINIC!

As soon as this new clinic in Vancouver is open, I intend to go there. It is in the running for up to $150,000 in funding for medical equipment from an Aviva Contest. All it needs is VOTES. The Aviva site asks for you to register in order to vote. All they ask for is your email address, a password and then they send you a link to click on. That’s it. You can also register through Facebook. I think you can vote every day for 15 days. Please, please help.

Here is some info about the clinic:

http://www.vancouversun.com/health/Clinic+specialize+complex+chronic+conditions/6922031/story.html

http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-clinic/default.htm

Here is where you go to vote:

http://www.avivacommunityfund.org/ideas/acf13624

Here is the Facebook page:

https://www.facebook.com/AvivaCCDC?ref=hl