Tag Archives: food

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A Day In The Life

My yesterday:

I had an appointment with the orthodontist at the sleep clinic to be fitted for the sleep apnea dental appliance. I already postponed this appointment a week since I’d been feeling so awful and, even though I’m still feeling awful, I didn’t want to cancel again. I’ve actually started to think that maybe part of the reason I’ve taken such a prolonged downturn is because I haven’t worn the cpap in two or three weeks, so I need to get this fix-apnea show on the road. [Quick aside: last week, when I called to reschedule, I told them I had an appointment with the orthodontist, but couldn’t remember her name. “Dr. P—–? She’s actually a dentist,” the receptionist corrected me and it’s been bugging me all week. I just googled Dr. P.: Nope, the doctor is an orthodontist and completed her residency at Harvard School of Dental Medicine and was on the orthodontic faculty at the University of Tennessee, College of Dentistry. Maybe this bothers me because my father is an endodontist and there is a significant amount of additional education and expertise that goes into a dental specialty. (I was on my way to becoming a Registered Dietitian once upon a time ~ a 2-year full-time graduate program that was going to cost me $50,000 ~ before I could even apply, I spent a year taking prerequisites that I didn’t have from my Bachelor’s degree: anatomy, physiology, biochemistry, organic chemistry etc. Virtually every time I talked to someone about my future career, they would confuse what I was doing with being a “nutritionist”. The distinction was important to me. Anyone can call themselves a nutritionist! Beware, those of you in the US: a “nutritionist” can be an 18-year old that read a lot of cooking magazines in her bedroom and decided to hang a shingle outside her door. There are no legal or professional regulations!) But mostly I think the mistake bothers me because I was incorrectly corrected… And you should know the staff… Rant over.]

The orthodontist, Dr. P., was really nice and very sympathetic to my situation. She said my teeth and jaw bone looked wonderful and my movement (of the jaw back and forth, side to side) was great and I was perfect candidate. She warned me that my teeth might shift from the appliance (like having braces) and my bite might change slightly and my jaw might hurt in the beginning and that they will give me exercises every morning to help stop the “muscle memory” in my face/jaw/head that will have a tendency to keep my jaw in the forward position it’s used to from 10 hours in bed wearing the device. She took the impression of my teeth and then told me to make an appointment for 5 weeks from now for the fitting. No. Way. Everything takes so long! It’s going to be another 2 months before I can even try out this device. Boo.

Unbelievably, this appointment was 1.5 hours (how could I have predicted that?!). The orthodontist was very thorough and explained everything in great detail, which I appreciate, but her office was windowless with horrid lights in the ceiling and at the 45 minute mark I was already losing focus and slumping in my chair. I had driven myself to the sleep clinic because it is very close to my house, but I had an acupuncture appointment afterwards downtown for which I need a chauffeur. I planned to meet my husband at home, but the appointment went so long, I asked him to come to the clinic to get me. Dr. P. gave me the option of coming back another day to have the impression done, but that would have postponed the whole process ANOTHER week. I called to warn the Good Master acupuncturist, my husband left his work truck in the sleep clinic lot and, before we got to the highway, I realised I had to eat something. Acupuncture on an empty stomach is no good and, if I didn’t eat something until 5pm when we got home, I would collapse. Because my diet is such a nightmare, the easiest thing to do was go home and quickly microwave some of the amazing leek and turnip soup my husband had made the night before… Of course, now it would have been much better if I had just driven home myself and met my husband there, rather than abandoning his truck at the clinic.

My acupuncturist only inserts needles in the ears, forearms, calves and feet. I may feel and look like crap, but I still have a modicum of vanity and, on the drive downtown, I was clipping my toenails and moisturizing my legs while eating my soup and reviewing my symptom calendar so I could accurately recount how I have been feeling since my last appointment. All this while sitting as far to the left of my seat as possible ~ practically on the center console ~ to avoid the blaring sun on our west side, threatening internal combustion and making my headache even worse. Once I got there (only ten minutes late!), he said he didn’t want to aggravate anything with acupuncture today… Wow, I had even shaved my legs. Instead, we talked about the Chinese herbs. Finally, after all these months, I was ready to buy a bottle. I’ve been waffling about this treatment for so long! He was quite excited. During our very first appointment last September, not even knowing that I would be one of the 1 in a 1,000 patients that had negative reactions to acupuncture, he had said, “Chinese herbs will be the most important thing for you.” He has always maintained that I have Gu Syndrome and these herbs are the key to my recovery. What finally made me come around was: 1) Dr. Chia’s video (if I had journeyed all the way to California to see him and he had put me on Chinese herbs after the Good Master spent 7 months steadfastly and confidently urging me to take his pills, I would have been mortified. They use different herb blends, but I trust my acupuncturist completely). 2) I started to feel worse. If I had stayed on that uphill trajectory, I wouldn’t have wanted to rock the boat by introducing anything new. So, maybe this crash will be a blessing in disguise.

The best part of this visit was he persuaded me to take my first pill while we were sitting there talking. He knew full well I might go home and not open that bottle for months ~ if ever. I’m such a chicken. Eat something with a lengthy ingredients list of things I can’t pronounce? Swallow something containing herbs my body has never encountered before? No, thank you. Not this delicate flower. But, the thing is, even though I know I have a sensitive system, I really still believe in the resilience of my body. She’s been a trooper all these years. So, I took the pill while he watched and I took another a few minutes ago and I feel fortified ~ emotionally, if not physically. Yet.

My appointment was so short that my husband was still about 15 minutes away when I finished. I was a mess. I was a shuffling pile of jello, slurring my words, bumping into walls. I literally did not manage to exit the elevator into the foyer before the doors started to close again ~ that’s slow! PWME (people with M.E.), you will appreciate this: I didn’t want to wait on the loud, busy, beepy, dusty street corner, so I wondered into the mattress store in the bottom of the acupuncture building and mumbled something to the socially-awkward salesman about needing a new bed. He looked at me uncertainly because I’m sure I sounded drunk and I was having a hard time walking. I told him I had an injury and didn’t want to walk around the store, but I would lie on this TempurPedic in front of me to see how I like it. Writing this, I’m laughing out loud because it really can be tragically hilarious the things we do to catch a rest break. (By the way, I wasn’t totally lying: I have a new plan to put a twin mattress in my meditation room, so my husband can have our bedroom back.)

The end of the story is that I was virtually comatose on the drive home, other than being able to feel every divot in the road grind my vertebrae together and batter my brain against the walls of my skull (note to self: win the lotto and buy the smoothest, quietest, comfiest car on the market). I tried to muster up the energy to drive home from the sleep clinic parking lot so my husband could drive his truck, but I was unsteady on my feet and I was really having a hard time opening my eyes and speaking clearly. It was just like the time I got pain killer and muscle relaxer injections in my butt for a sprained neck. I was all floppy and out of it. So, we went home instead and I don’t even remember stumbling to bed where I stayed for two+ hours. My husband took a taxi back to his truck.

It wasn’t until after 7pm that I read the news about the bombs at the finish line of the Boston Marathon. There are no words to describe how I feel about this tragedy, but I am once again filled with gratitude for those people that don’t turn away from suffering. From the first responders and the medical personnel that make helping their careers, to the bystanders and strangers that jump in to help without hesitation, to the friends and family that provide ongoing support to those that hurt… holding hands, holding vigil, holding hope… Thank you.

Title Credit.

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New Beginnings

68 weeks sick.
45 weeks gluten-free.
40 weeks unemployed.
26 weeks on autoimmune diet + supplements.
23 weeks housebound.

This is my update.

For those of you just joining us, six months ago, my doctor put me on a anti-inflammatory diet that is supposedly good for autoimmune conditions.

These are the rules:

  • No gluten (that is, no pasta, no muffins, no pizza)
  • No grains (that is, no gluten-free bread or baked products, no rice, no popcorn, no tortillas)
  • No dairy (that is, no yogurt, no ice cream, no cheese)
  • No legumes (that is, no peanut butter, no hummus, no beans)
  • No nightshades (that is, no red pasta sauce, no mashed spuds, no hot sauce)
  • No sugar (yeah, right)
  • Only lean meats and fish

I have been horrifically strict (as in, I won’t eat soup with corn starch in it or the soy yogurts made with rice starch). However, I have allowed myself oats (must have granola for breakfast) and, although I’ll stay away from, say, foie gras, I am eating beef. A lot. Sugar, also, is difficult. I’ve cut down drastically, but I still eat dark chocolate every day and sweeten my granola with honey.

I feel no different from this diet. Besides the fact that I have no joy in food anymore. In my other life, I would have had fun researching recipes and learning to cook with new and interesting ingredients, but I don’t have the energy. I couldn’t stand in the kitchen long enough to cook a meal. So we rely on a lot of salads, stews, roast chicken with veg etc. And I eat more nuts than anyone on the planet and buckets of fruit. Ick.

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My Food Shelf

The other day my husband had a long chat with one of his old friends. Afterwards, he said, “I caught him up on how you are doing.” I scoffed: “So, you told him nothing’s changed?” He said, “Well, no… you’re worse.”

It took me back a bit… Yes, of course I am worse. I can’t do half what I could last summer ~ no dog park, no grocery shopping, no lunches with friends. I am only driving myself to places that are very close, I never have more than one phone conversation a day, I can’t walk as well as I could six months ago ~ my body has degenerated from so little movement. I’m in MUCH more pain ~ my spine, hips and muscles. The fibromyalgia-type pain only started in earnest after I left my job. I look worse. The lack of sun and fresh air have taken a toll on me. My sleep problems and emotional turmoil have aged me.

BUT, although I’m worse, I’m better, too. My sickly, shaky, evil nightly sweats are gone (except for the odd night) and that completely changes my life. I will never be able to adequately put into words what those malarial nights were like. Sleeping with the enemy. Also, my “nightly flu” has gotten better ~ the sudden increase in chills, aches, sore throat at around 6pm. There were so many evenings I would say, Okay, this time I’m really coming down with something. I still have those symptoms, but they are muted. The headaches eased up. Did you watch Mind The Abyss? After watching it, my husband said, “When the headaches came on…the man’s head held in his hands… that’s what struck me the most.” The severity of my headaches and the accompanying noise and light sensitivity altered my life more than perhaps any other symptom. The constant chills are gone… The ice in my bones, shallow breathing, tense muscles, uncontrollable shivers… This time last year, I COULD. NOT. GET. WARM. I rarely progress to the point of “bricked” anymore: where I hit a wall and I am grey, ashen, can’t move, can’t speak, weeping in a ball on the couch. My sleep is still a major concern ~ constant waking and endless adjusting from pain ~ but I get 8+ hours a night and that is a huge step forward. And, finally, my outlook is better. Don’t get me wrong, I mourn A LOT and feel alone and desperately sad (mostly when my symptoms increase), but, I laugh now and there is a semblance of acceptance. There was a point in time when I couldn’t smile. I tried, but they just weren’t there. It wasn’t depression, it was from pain. Pain sucks smiles away. And I had the knowledge that below the pain was the flu and below that was exhaustion and fear and a life I wouldn’t recognise.

I’m trying to forget about 70% of what I know about ME/CFS and follow my heart. So, yesterday, I threw the ball for the dogs and scooped the poop in the yard. Afterwards, I had a much harder time moving, but I thought, “Maybe it’s not a CRASH. Maybe it’s just because your muscles aren’t used to it. Maybe you’ll be okay. Tomorrow is a new beginning.” You never know what someone is going to say that will stick in your brain and help you through the days. My friend Z. suggested I think of new beginnings. Obviously this makes sense in the grand scheme of this new alien life. It’ll never be what it was and I have to eventually look at it as a new beginning and stop fighting it… But, I’m not quite there yet. I’m not ready to embrace this mortal coil as a new, permanent realty. However, every day can hold hope as a new beginning. Every hour. It’s kept me going through a bad week. After this bath, maybe I’ll feel better, maybe a new beginning. After this meditation, a new beginning. This moment, a new beginning.

Today I am grateful for all that is better and new hope for the future.

Launching my wish for the future, with husband and friends Z., J. and D. Thanksgiving, 2010.

Launching lanterns with our wishes for the future, with husband and friends Z., J. and D. I wrote, “I wish that we have long, healthy, happy lives.” My husband wrote, “What she said.” Thanksgiving, 2010.

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Liebster Award Part 1 ~ 11 Things About Myself

I’m afraid I have to fulfill the Liebster Award criteria in increments since I’m not having the best week. So, here’s the first part.

List 11 things about yourself:

1. I was born in Japan.

2. I spent the majority of my formative years in Dublin, Ireland and pine for that city every single day.

3. I’ve been in 27 countries. One of those was an airplane stop (El Salvador) and some of those were only for a day or two (Belgium, Luxembourg, Monaco), but I am so grateful that I traveled where I did while I could. Highlights: Soviet Union, Austria, France, Costa Rica, Morocco.

4. My friends and I were mugged when we were in Morocco. He said, “If I had a black heart, I would kill you and take your money. But, I have a white heart, so I just ask you to give it to me.”

5. Surprisingly, I think the thing I miss most about my pre-M.E. life is laughing. I would laugh so much at work. I miss the banter of those crazy personalities. No matter how bad my day was, I loved my co-workers fiercely. We accepted each other fundamentally, even when we argued… and we always wound up laughing. It’s hard to find opportunities for laughter when you are housebound with no social interaction.

6. I love good movies, books and food in a way that is…voracious. I crave the experiences, revel in the moments and treasure the memories.

7. I used to write poetry. A lot.

8. I cannot abide illogical arguments and will debate to a fault. I want everyone to be fair, just, logical and see all sides~ even if they don’t agree with them.

9. I have two (small, pathetic) tattoos. One done in my teen years with my best friends E. and K. and one done with a needle and Indian ink in a dorm room in college.

10. I was given a brand new Harley Davidson motorbike, plus helmet and leathers by one of my customers when I was a server (no strings attached, I swear!).

11. I have number obsessions. 519 has been following me around for years (and May 19th wound up being the day of my father-in-law’s funeral as well as the first day of my non-working life). 28 has always been significant ~ to the point that I had to sit my fairly-new boyfriend down on the eve of my 28th birthday and explain that I was worried this might be the year I would die (I know, morbid). Interestingly, ten days later, I was in the emergency room with my first case of anaphylactic shock. Even more interesting, I never, ever put that together until right this minute when I looked at my health records. That really was the beginning of the end of my health. My records say: 1977-78: chronic cough; 1987: tonsillectomy; 2001: anaphylaxsis… and then, every year, thereafter, there is something significant.

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.

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So, this is it.

Today I went for a follow up with the infectious disease doctor that I saw in May before I had to leave my job. I wanted to ask him about a few things that have been rattling around in my brain, namely: Could I have caught something from my dogs (through squirrels or birds or whatever)? Does he not think I have some sort of virus since I have a daily sore throat, hoarseness and low grade fever? What does he think about antivirals to treat Epstein-Barr virus (EBV) and/or cytomegalovirus (HCMV) and/or HHV6? I also ran Guillaine-Barre and bacterial endocarditis (SBE) past him and asked him about vaccines.

He is a wonderful, knowledgeable doctor and he took the time to explain things in detail to me, but I’ll sum it up by saying I am grasping at straws. He said, point blank: “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms. Patients can get better, but they never get back to where they were before being sick.” It was very final. It left me feeling empty. This is it. I’ve spent a year researching, reading, going to doctors, getting tests, asking anyone and everyone for help and advice and ideas… It’s time to move on. This is it. It’s long term and I need to move on with treating my symptoms and stop searching searching searching…

Regarding the other stuff, the ID doctor said they had ruled out active viruses and, in his opinion, mostly ruled out autoimmune problems, so, what is left is allergy — immune activation/allergic response. His experience (and what the medical community knows) is, a virus triggers CFS but then the virus is long gone and I’m left with the body’s ongoing response that causes the symptoms. So, antivirals will do no good and antibiotics definitely won’t. He is the 4th doctor to tell me there is no way they would throw broad-spectrum antibiotics at a patient without any clear target – especially in CFS patients where side effects can really cause hell. I have tested positive to past infection or exposure to EBV, which most of us will (and I had this test done years ago with the same result, so I know this didn’t cause me to get sick, although you can get reactivated EBV) and he said I am negative for HCMV, which many people aren’t.

He doesn’t think there is anything that the dogs could have given to me, I would be paralysed and hospitalized if I had Guillian-Barre and I’d be dead if I had SBE (he said, before antibiotics, SBE was one of the few infections that was 100% fatal. People might survive rabies, for example, but not endocarditis). Finally, he said my husband should get a flu shot ASAP because flu would be “very bad for you” and that I should never get any vaccines until I’m over 65 and then reassess. Wow.

I also had a follow-up with the Good Doctor. She is the one who will be helping me with symptom management going forward. Since I spent three weeks “washing out”, I am going to add in one thing at a time, very carefully. We’re starting with foods, moving to supplements, then we’ll tackle other things down the road, like heavy metal testing, hormone testing, Chinese herbs for Gu Syndrome, even medical marijuana… Anything!

I added back in rice last week and, yesterday, I added back eggs. I’m pretty sure I had a reaction to the egg, so I’m going to steer clear of them for now. I was feeling almost great (yes, I said great. Yesterday afternoon was really the best I’d felt in months) and, within half an hour of eating the egg, I had a raging headache. And then I had allergy-type symptoms in my nose: runny, stuffy, swelly etc. (although, that is still with me today and could just be me ~ or maybe I’m finally getting the cold that’s been threatening for a year.) Thursday, I add back dairy, then corn, then tomatoes, then legumes…other grains… If/when I want to start the Lyrica, I do it three days after the last add-in and three days before the next.

She also had the results of my stool sample (how long did that take? Three months?). No parasites. Inflammation not as bad as she thought it would be. Yeast levels not good and, even though I take a too-expensive probiotic every day, the good bacteria in my gut are nonexistent. She said “this is actually quite concerning”, so I have a new probiotic to order and, after that, she is going to start me on herbal supplements to combat the yeast. I’m staying on the ferrous gluconate (watch out, iron causes constipation – who knew?! I thought it was from coming off the pill) and, down the road, we’ll add magnesium and zinc and the other supplements.

Gratitude today is given to last week’s headache: You were SO ALL-CONSUMING AND PAINFUL that I never gave one thought to my first period in nine months.