Category Archives: Diet for Autoimmune Conditions

by

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.

by

Buffers can help, but sometimes not enough…

My brain MRI was fine. No evidence of MS, no sign of something causing my headaches. My c-spine MRI showed that I have mild intervertebral disk space narrowing and mild central disc osteophyte complex, centered at C4. I won’t go into the history of my neck problems, but if this is “mild” I feel very, very sorry for anyone with moderate or severe problems. When my neck has “gone out”, the pain is 10 out of 10. It is like nothing I’ve felt before. Can’t lie down, sit down, move arms, head, back… I’ve showed up at the doctor’s office twice at 7:30am, without an appointment, crying and begging for help. Both times they gave me injections in my butt that knocked me out for almost two days. I guess, if the bone problem is mild, the muscle problem can still be severe. My physical therapist said I had the worst case of hypermobility in my neck that she had ever encountered. It must have been from all my head banging, rock ‘n’ roll days and all the extreme sports I played. That’s sarcasm. I didn’t do anything!

My neck first went out a week after a particularly bone-rattling roller coaster called The Iron Wolf. It was a stand-up roller coaster and they had head buffers on both sides to minimize injury as you were being tossed around. I was too short for them to buff properly, though, and my head and neck took a battering. My brain felt blended. One week later, I tried to get out of bed and couldn’t. The neck pain was excruciating, radiating down my limbs. I was so unfamiliar with bone/muscle pain, that I thought I was going to be paralyzed. I thought my spine was fractured or something. I lay there for hours with tears running into my ears, waiting for my husband to get home. That one healed on its own since I had no health insurance at the time, but I’ve had problems ever since. I guess I did go into the history of my neck problems, after all!

Anyway, back to the present: I added back in rice to my diet with no adverse effects. Unless this exhaustion and pain are caused by the rice?? Haha. Just kidding. I’ve added flax to my smoothies and started taking the zinc and ferrous gluconate supplements. The latter is meant to be taken 1 hour after food and 2 hours before food and, let me tell you, it is VERY HARD for me not to eat for 3 hours, so I’m cheating a bit on that one.

I stopped taking the birth control pill yesterday. My headache is all day, every day and is crippling me. I’ve spent a lot of time lying down in dark rooms in the last 3 weeks, my face is permanently pinched, I can’t deal with too much light or noise. I am constantly alternating epsom salt baths, ice packs, arnica, IcyHot spray, TENS unit, meditation, breathing exercises, anything I can think of to ease up my neck and back muscles and hopefully help the headache. After much research on my headache support group forum, I’ve convinced myself that it is caused by the pill, so I am going go stop taking it for a month and see what happens. I also want to quit the pill because I’m extremely sedentary and that contributes to the risk of blood clots (and being over 35 years of age). I actually think I would prefer any other pain to this headache (except for maybe the aforementioned 10-out-of-10 neck pain… and, when my period hits, I’m sure I’ll amend that statement).

I woke up full of gratitude this morning. There are people out there dealing with this and other illnesses with little to no support, starting their journey with so much less than I have. My heart breaks for them. Without my income, I am terrified of losing our house, our savings, our health insurance, but I could have started this illness with no house, no savings and no health insurance. What do people do? I am blessed and grateful to have a slight buffer. Like The Iron Wolf’s buffers, it may not be enough to save me down the road, but, for now, I can ride the roller coaster.

by

What’s gone wrong in your system?

I got the results of my sleep study test yesterday. I spend about 15% of my night in deep and REM sleep and these should be around 20%. Also, I have a form of sleep apnea. There are three different kinds (I can’t remember the names): the most severe kind is when you stop breathing for a full ten seconds or more ~ I don’t have this. The second kind is when your throat relaxes to the point that you are not getting enough air, but it is a partial restriction ~ not full apnea. And the last kind is when this throat closing causes your brain to wake up to rectify the situation. I have the latter two. He said my brain is waking up an average of 49 times an hour. This has me in an aroused, wake state a lot, obviously, and it also causes my sleep cycles to be interrupted, so, even if 15% of my sleep is deep, it’s broken up throughout the night, which isn’t as restorative. So, I get to use a CPAP (Continuous Positive Airway Pressure) machine! Seriously, I’m going to sleep with the Zeo headband, a mouth guard and a face mask? Wtf? That’s a pretty sight. But, please god, let it help me feel marginally better.

He also said, “Have you had your ferritin level checked?” “Yes, two months ago. It’s in your computer.” He looked it up: “Oh, it’s low. You should be on a supplement ~ that’ll help you feel less fatigued.”

Now, let me tell you how much this pisses me off. The crappy chronic fatigue clinic ordered this test along with zinc (which is also low). The results came back two months ago and nobody called to tell me what it meant. My regular GP saw the result of the ferritin, also, and didn’t tell me to do anything about it. Mine is low and I don’t have a period. If I had a period, it would be far lower, the sleep doctor said. So, I could have had TWO MONTHS OF SUPPLEMENTS UNDER MY BELT BY NOW IF SOMEONE HAD JUST REVIEWED THE RESULTS AND CALLED ME. I am raging mad! This has happened at every single step along the way this year. Nobody communicates with the patient. Actually, the front desk people do ~ schedulers etc. ~ they’ve been pretty good. And maybe one or two nurses. But is there a doctor out there that says, “I am testing you for X, Y, Z and, when I get the results, I will call you and explain them. I don’t think you have A, B, C and this is why:…”?? How dare they! I don’t know why the ferritin has me all riled up. It’s just that he put me on a heavy-duty supplement (ferrous gluconate 648mg/day), so obviously I need it and it might make a difference. Actually, the reason I’m so annoyed is this has happened so often and can have more serious consequences. I won’t get into the details, but my husband had a test that the doctor said was negative, but we have access to our results online, so, I looked at the results and googled the test and did the math and said, “uuummm, I think this is positive, not negative.” He emailed the doctor and, sure enough: “Oh, yes, sorry, it is positive. We need to treat you for that.” Say what?! I know they’re only human and I know they’re very busy and I know the whole healthcare system is a mess and maybe the doctors are just as frustrated as we are, but what if we didn’t have access to our records? I never would have found the mistake. And that’s just one of countless mistakes. Please, everyone, be your own best advocates. Call for your test results, request copies of every test you get done, review them yourself and point out anything that looks odd. And, pay attention to any result that is in the low or high range of “normal”! Normal has never been normal for me. My TSH was in the low range of normal for years as two giant goiters grew and strangled my thyroid until it wasn’t working anymore. My ferritin was technically in the “normal” range, but the doctor said it was too low. Et cetera, et cetera, blah blah blah.

Ok, on to other stuff. WordPress shows me what internet searches led people to my blog. Yesterday, 6 out of 14 searches were for MRI info, so it makes me really happy that I expended the energy to write my tips. I hope it helped someone out there.

My wash-out period ended on Tuesday, but I haven’t added anything back in because I felt like such shite, I didn’t think I’d be able to distinguish my disease symptoms from any symptoms new foods caused. Maybe I will add rice today. The Good Doctor says we are looking for “stark sensitivities, so worsening of mood, fatigue, energy, pain.” This is really hard. I was feeling pretty good last week and then, without warning, I was a mess. If I had added rice in that day, would I think rice had caused it?

I’m back to using the light box and I’m starting acupuncture again next week. I’m going to try all the supplements again, as well as melatonin, Lyrica, and the Chinese herbs. I just don’t know in what order… I guess I have to add all the eliminated foods back in before I start anything else to gauge my reactions… This is so tedious and time-consuming. I used to love Thanksgiving and Christmas and now I don’t get to celebrate at all. I can’t eat most of the food, I have no energy to do special preparations and, even if I did, there’s no point in planning something when the activity and/or socialising will just cause me to crash. Wow, this life sucks.

On a lighter note, have I mentioned how grateful I am for my husband? He drives me to my appointments, takes the dogs to the park, fixes our roof, landscapes the garden, hoovers, cooks dinner, sprays IcyHot on my back and, above all, keeps a positive attitude.

Good times gone, and you missed them
What’s gone wrong in your system?
Things they bounce like a Spalding
What’d you think, did you miss your calling?

It’s so free, this kind of feeling
It’s like life, it’s so appealing
When you’ve got so much to say
It’s called gratitude, and that’s right

Good times gone, but you feed it
Hate’s grown strong, you feel you need it
Just one thing, do you know you?
What you think that the world owes you?

What’s gonna set you free?
Look inside and you’ll see:
When you’ve got so much to say
It’s called gratitude, and that’s right

by

Diet… Day 51. Wash-Out… Day 12.

Last night I drempt that I had been out socialising with friends and I started to crash. I couldn’t get back home, so I was trying to get my husband to find me a hotel room… I had to lie down… I was going to collapse… please help me, it’s dark and wet and where is everyone?… I just need a bed for a few hours… I don’t want to die… And then rats attacked me. They were fat and wet and squeaking and hanging off of me everywhere… I woke up panting while I was being eaten by the rats. I was scared shitless and didn’t know where I was and my sheets were wet from sweat.

I have, however, been feeling a little stronger the last few days. Not strong, but stronger. My headache has eased up enough to be manageable with epsom salt baths, the tens unit and icy hot spray on my neck. The pain and stiffness in my back doesn’t have me in tears and the exhaustion seems to be controlled. Just a normal ME/CFS exhaustion, not a crippling, slurring, crawling-up-the-stairs exhaustion. I have a new symptom driving me batty: constant pins and needles in my right foot for the last 3 days. It moved into my calf last night, but doesn’t seem to be there today. I have had this before in my hands and I have the Raynaud’s issues in my feet, but I can’t remember this maddening constant tingling before.

My days have become very predictable. I am up at around 8:30am, after about 7 to 7.5 hours sleep. I have GREEN tea now and, for breakfast, homemade granola with almond milk and a smoothie (today was pear, pineapple, strawberry smoothie with flax seed, coconut milk and walnuts) while I do some “work” on the computer (pay bills and curse Comcast and Verizon, see how our budget is going, answer emails, apply for disability but get overwhelmed and stop, try to make an Amazon Fresh shopping list because I can’t go grocery shopping and decide it’s too much energy and too expensive, research ME treatments and start to bang my head off the wall, research MRI stories and wish I had the option of Valium, write in my blog etc.). Then I warm up my muscles with a bath or the hot tub, do some stretches and then a meditation, which I always try to turn into a nap. Then lunch (usually a salad or soup or tuna and I’m currently addicted to Terra Chips) and maybe some house chores if I’m able. Maybe some reading or some more computer time. Another meditation (rest before and after activity, always. Resting is considered only lying down with eyes closed, awake, meditating or sleeping, says Dr. Bested). Walk around the house, if I’m able and then the evening with my husband, having dinner (whatever is leftover or whatever he makes because I’m virtually never able to stand for long in the evening without hitting that pain and exhaustion wall), watching a movie ~ whatever I can manage. Another meditation if I’m not going to bed early. Most of the time I’m in bed at 7 or 8pm, reading/researching. Some of the time I can stay upright until 9 or 10pm. I usually don’t turn off the lights until after 11pm.

My sister-in-law sent me a Stretching for Beginners DVD and usually anything anyone buys for me is too advanced because I’m more decrepit than they realised, but this DVD is good! I have done the sitting, standing and lying stretches ~ one on each day that I’m up for it. So far, it has felt good and I’m so proud of me. And I’m ecstatic that I haven’t pulled a muscle doing it. Maybe I’m finally learning. I walked five laps around my house yesterday. I’ve been wearing a pedometer this week and have taken between 1,700 and 2,200 steps each day. I realise this is not a lot — my dog park visits alone were over 2,000 steps — but, those numbers are including 400 to 500 steps walking laps around my house. There are many, many days when I’m not able to do that and my pedometer would say more like 1,000 steps at the end of the day, so I’m happy. I want so desperately to double, triple those steps. I want to go outside and run as hard as I can for as long as I can. On top of everything else I have had to endure, the patience needed to deal with this disease is mind-blowing. Every time I have to go upstairs or downstairs, I think, “What can I take with me?” so I don’t waste any trip. Every movement is about conservation, every day is planned, every physical feeling analysed to ascertain whether it was caused by too much of some activity or emotion. Damn, I shouldn’t have done laundry… I knew I shouldn’t have chopped those vegetables… If only I hadn’t lost my temper… From now on, I must sit down when I dry my hair…

My mood is much better, which is probably why I’m feeling stronger and my symptoms seem a bit more manageable. I think my Mother and brother being here helped give me strength. Plus, I got to Skype with both of my best friends in the last week and that is like a pain killer. Literally ~ people can be pain killers. It’s amazing.

Something else helped nudge me from defeat into fight-mode: I read that there are multiple studies putting the average age of death of ME/CFS patients in the late 50s. That’s about 30 years too early. On the one hand, I’m very grateful that I might have 20 more years to live and, on the other hand, I’m devastated that I might only have 20 more years to live. I’m not emotional over it. It just caused me to think, Alright, time to get over this now because I’m not going to die in my 50s, dammit. Obviously, I’m not just going to “get over it”, but it made the fight come out a little. I can’t just accept that this is permanent because I don’t want to be one of those statistics. So, time to heal. Seriously.

My back is killing me, I have to stop typing now. So, a moment of gratitude: I am grateful every single day that I am not worse off. I am grateful for walking and talking and typing. I am grateful for eating and drinking and showering myself. I am grateful I was never in a motor vehicle accident, never got fungal meningitis from a steroid injection, never got shot or stabbed or beaten up. Some people are much more… oh, ever so much more… oh, muchly much-much more unlucky than you!

It’s a troublesome world. All the people who’re in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you’re lucky you’re not!

by

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.