March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

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Yay! Beach!

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Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

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I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

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My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

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New In The Garden This Week: Faux-camping, Flower Fireworks and a Birthday Party For Me!

Our fairly new, fancy Kenmore refrigerator (which is about three times the size of the one I had growing up (which is still alive and kicking) and, being one of my first major kitchen appliance purchases, I researched very well, even going so far as to subscribe to Consumer Reports to read up on it) has broken for the third time in a month. Today, after the repairman’s third visit, we opened the fridge door and could hear the motor blade whacking off something, so he’s going to have to come back a fourth time. While our kitchen is a repair shop, I am sequestered in the garden with the dogs, cooking breakfast by camp stove and typing this post under a “parasol”. 🙂

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Our garden is like the world’s slowest fireworks show. Gone are the lilacs, cherry blossoms and tulips. As they wilt and brown, now emerge lilies, irises, peonies and my favourite: the pom-pom tree (not a technical term 😉 ).

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Perfect Peonies.

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Luscious Lilies.

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Stunning strawberries that I can’t eat anymore! 😦

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Irresistible Iris.

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Riley glamour shot.

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Romantic Rhododendron.

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Dr. Seussian Pom Pom tree that snows petals down everywhere.

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Another “rhody”.

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More irises.

Also new in the garden were people (yes, that’s plural!) for my birthday soiree. My sister, her boyfriend and dog and our best friends here in Seattle, Z and J and their beautiful little girl, A. With my husband, that’s 5.5 people and 3 dogs… And I did it! I was out in the garden, sitting up, listening to various voices and mixed conversations for THREE HOURS. How did I do it? I made it between the hours of 3pm and 6pm, my best times. I warned them (for the 700th time) that it had to be mellow, no big energy, no loud talking, no music. I asked them to bring their own drinks and food and totally took the burden of hosting off of me and my husband. I rested for hours before and after the gathering. I scheduled no appointments the day before or the day after. I made sure I had food in my stomach.

The weather was surprisingly lovely that day (surprising because the forecast said it would be overcast and cool). We sat at our garden table and munched on snacks and I watched from behind my sunglasses and listened… just took it all in. This was the first time having multiple people over in eight months and, the last time we tried this, I was in bad shape after half an hour, even though I hardly spoke.

I don’t remember much from my birthday. I had to ask my husband if everything went okay because I think I meditated myself into a state of Zen trance most of the time. I remember trying on the clothes my sister got me and I remember accidentally spilling boiling water on my dog’s back. I remember marveling at how beautiful and sweet little A is and loving my sister’s dog tearing around the garden (“zoomies”). Mostly I remember swimming in my loved ones’ company, listening to their chatter and laughter and feeling so lucky that they wanted to come see me and so grateful for every moment that I was able to participate.

I love getting older. Every year will be a celebration that I’m still here and I’m still living the best I can.

“I’ve learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I’ve learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I’ve learned that regardless of your relationship with your parents, you’ll miss them when they’re gone from your life. I‘ve learned that making a “living” is not the same thing as making a “life.” I’ve learned that life sometimes gives you a second chance. I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back. I’ve learned that whenever I decide something with an open heart, I usually make the right decision. I’ve learned that even when I have pains, I don’t have to be one. I’ve learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I’ve learned that I still have a lot to learn. I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
~Maya Angelou
R.I.P.

DIETS Part III: finding a balance in low-histamine and figuring out how to eat more meat.

Some of you have commented on how exhausting/frustrating/crazy this elimination diet process is and I agree! It is incredibly time-consuming considering the research into studies, the searching for recipes, the phone calls to grocery stores, the time my husband spends shopping, menu discussion, and cooking time…! Since none of my diet changes has made me feel any different, it seems like a futile process, but here is what I always keep in mind:

Some people, such as my brother, eat a paleo diet even though they are completely healthy ~ they just want to continue to feel great. Or feel even greater. Some people are diagnosed with a thyroid condition or an autoimmune illness and immediately change the way they eat, trying to ease symptoms or stop the progression of disease. I never even considered doing these things! I had one odd health issue after another and never changed a smidge about the way I eat. The doctors didn’t mention diet, so I didn’t think about it. I didn’t even research the things I was experiencing. This blows my mind more than anything. My time was fully committed to my job, there was no room for anything else. Plus, they were intermittent episodes (I thought) and I was still feeling fine (I thought), so everything was easy to ignore. I had given up alcohol, which, to me, was the ultimate sacrifice ~ do you think I would give up anything else? No way!

One of the best gifts I was given was my OBGYN off-handedly saying, “You should eat some salt if you feel like you are going to collapse.” Uuuuhhh…? Why didn’t I know that? I’d been limiting my salt for years because I thought it contributed to the swelling. Couldn’t just one of the many nurses that have taken my blood pressure over the years mentioned salt to me? They always comment on how low it is and I always let them know I get dizzy. “Try increasing salt.” Just that simple.

The other thing I always keep in mind is my dog, Bowie. When he was young, he developed bumps on his skin. The vet thought it might be a food allergy, so we changed him to a limited-ingredient diet. Over the next year -maybe two- his skin got worse and worse. We changed his shampoo, we washed him more, we washed him less, we gave him supplements, he was put on Benadryl. His coat is a beautiful, deep, glossy brown; he looks like a stallion. But the bumps got bigger, his skin was like braille, and his skin started to have a distinctive infected smell.

Then, one day in the dog park, there was a hand-written sign tacked to a post: “Natural Balance food is killing dogs!” It had some other info on the sign that I can’t remember, but there was nothing online that we could find. Regardless, we paid attention because that’s the brand our dogs ate. And then a miracle: Literally, a few days after we switched their food, we had two puppies back in our house. We didn’t even realise that their happiness and activity level wasn’t normal for them because that’s all we knew for so long. They were DANCING. They were LAUGHING. They were running around like we had just removed their shackles. And then Bowie’s skin made a total turnaround: The bumps and smell disappeared incredibly quickly. We were very grateful, but my heart was broken over the poison we had been feeding them. If anyone had witnessed the change, they would know the radical difference food can make to health.

Lastly, I never want to look back and regret not trying diet changes. One would think that time ticks by slowly when you are sick and housebound, but, it turns out, the years speed by quicker than ever. I don’t want to be 50 or 60 and wish I had tried this in the beginning of my illness.

So, after 3 weeks of eating sort of low-histamine and a month of eating strictly low-histamine, I was not feeling any better. In fact, November and December were probably the worst months I’ve ever had, but I blamed that mostly on repercussions from the tilt table test and IV fluids reaction. I’m sure the stress around a new way of eating and hypoglycemia didn’t help matters, though, so I allowed in some histamine foods (bananas, berries, lemon, some vinegar, all greens, all meat), but I have continued to avoid the biggies (fish, spinach, tomatoes, eggplant, pickled/fermented foods, dried fruit, leftover animal protein). I needed to increase my protein intake to stabilise my blood sugar and started force-feeding myself meat. It was joyless, like taking medication. I am eating this chicken so my blood sugar does not tank in the night… (picture me sitting in bed, eyes closed, slack-jawed chewing a piece of cold, dry meat, grimacing as I swallow).

Around the same time, I eliminated oats ~ the only grain I had never lived without and had, in fact, been eating every day in the form of granola/porridge and oat crackers ~ and that left me desperate for breakfast options that included protein. Beef breakfast patties became a staple. We started investigating all the butchers in our area and my husband talked to all the grocery stores. We figured out when deliveries come in, whether they are fresh or frozen, how long since the date of slaughter, and we buy grass-fed, pastured beef and lamb, organic chicken and turkey, trying to source the healthiest and freshest meat to continue keeping histamine in check. My husband cooks the day we buy meat and then we freeze portions so I have meals at the ready. He still makes beef bone broth and chicken stock, but we cook it in a shorter amount of time and freeze it in silicone ice cube trays and jars. Beef patties for breakfast. Lamb shepard’s pie, portions wrapped in wax paper. Chicken and turkey breasts that can be thrown in soup or chopped on a salad or served with rice pasta and topped with veg and sauce (see FOOD! page for some recipes). Blood sugar crashes became much rarer.

Frozen broth

Frozen broth

My weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
artichokes (contain quercetin, luteolin and rutin);
sweet potato (anti-inflammatory, contains rutin and quercetin) and butternut squash latke (antihistamine, anti-ulcer, anti-inflammatory and antidepressant action);
pomegranate (mast cell stabiliser, anti-inflammatory).
**Info from thelowhistaminechef.com**

Another weird breakfast:
Grass-fed beef patty with parsley (antihistamine) and thyme (anti-bacterial, anti-inflammatory, antihistamine);
sauteed with spiralized zucchini (has anti-inflammatory, anti-ulcerogenic and potentially antihistaminic properties);
cauliflower (contains anti-inflammatory vitamin K) and sweet potato cake (anti-inflammatory, contains rutin and quercetin);
apple sauce.
**Info from thelowhistaminechef.com**

I started to feel a bit better overall in late January, right after my bad pre-syncope episode during my period and right after I quit oats. By “better”, I mean back to where I was around September/October of last year. Able to walk 800-1000 steps a day instead of 500, my daily headache got better. But still not going into the garden, not stretching, not able to talk very much. One amazing change is my heart rate has gotten much lower overall ~ almost too low. In the 70s and 80s when I am standing up, not moving. Mid-50s sitting, watching tv. Low-50s and high-40s sometimes, while lying down in bed.

I refuse to believe that eliminating oats made the change.
A) Because I love oats too much and can’t wait to eat them again. I HATE savoury breakfasts. Hate them. Make me sick and nauseous. I was the one going to the Irish pub for a Sunday fry with my family and ordering porridge or fruit, yogurt and toast. Every morning is a struggle. It has gotten easier, but it’s not enjoyable. I don’t want acorn squash and beef and kale for breakfast and I never, ever will. It’s one of the reasons I have continued to search for “baked goods” recipes and kept rice in my diet (so I can have rice cereal or rice toast, if I like).
B) Because nothing can ever be definitive in such a changeable, cyclical disease. I also stopped taking my B-complex around the same time. That could have been causing my headache everyday!

Banana-Zucchini muffins: click image for recipe

Banana-Zucchini muffins: click image for recipe

In the final diet post, I will discuss AIP (autoimmune paleo diet) and all the other complications and sensitivities one comes across when researching online. It’s enough to send anyone straight to the nearest fully gluten-ized and dairy-fied bakery.

Happy Birthday To Me!

Today, I turn 40 years of age. We have a big day planned. We’re going to the beach with the dogs. We’re going to throw the ball and walk in the sand and let them chase birds. They haven’t been to the beach since last summer when E. was visiting and I still had some energy.

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I’m not going to go to bed afterward. Instead, I’m going to stop by the grocery store and buy all the fixin’s for a fry tomorrow morning: eggs, bacon, sausages, bread, tomato, proper cow’s milk for proper tea… I might even look for decent baked beans and black pudding. Then, this evening, I am going to take a shower, wash my hair and put on make up for the first time in 9 months (gasp!). I am going to put on a dress ~ it is beautiful and still fits me and I feel sexy ~ and some very high heels ~ I’m able to walk in them properly, without shuffling, and they don’t hurt my back. We’re going into town for dinner, meeting up with friends and family. It’s going to be a long 5-course indulgence and I’m going to ignore all my diet rules. I am going to rip apart fresh-baked bread, taking the time to inhale its aroma before slathering on creamy butter and savouring every bite. I am going to close my eyes every time I take a bite of pasta ~ I don’t care what kind it is ~ and be fully present in that moment, witnessing every chew with all my senses on full-alert. I am going to order the most decadent dessert, something with pastry and chocolate ~ eggs, sugar, flour, butter ~ and revel in every single mouthful: no guilt, no worry, no blood sugar issues, no inflammation issues, no intolerances or allergies or leaky gut or bowel dysbiosis or nausea. There better be a cheese plate involved at some stage and I might even have some wine. Dry red wine. A whole bottle. Maybe I’ll sneak outside to share a cigarette with someone. We’re all going to talk over each other and laugh hysterically and the noise won’t bother me. I won’t be confused and overloaded by too many conversations at once. I won’t think about pain or exhaustion or how I will sleep tonight or how I will feel tomorrow. Because I will feel fine. I will feel tired and happy and full and grateful. Oh, and tomorrow morning, while eating that lovely breakfast, I will realise I’ve won the $600 million lotto.

Well, a girl can dream, right?

No, unfortunately, today will be like every other day. It’ll be a little bit worse than the norm because my sleep vanished this week and I’m crippled with new muscle pain on top of the old stiff exhaustion. But, it’ll be a little bit better than the norm because my sister is coming over and my husband isn’t working. Three people and three dogs? It’ll be a carnival compared to my usual still, silent days.

Goodbye 30s, you actually were literally the best of times and the worst of times. I have three birthday wishes for this new decade: Continued good health for those I love, better health for me and relief from suffering for all people and animals on this earth. That’s not too much to ask, is it? 🙂

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May 18th, 1973

January 1st, 2013

2012 was the worst year of my life. I realise that is not a very festive and celebratory way to start a new year’s post, but it’s the truth. Having said that, however, I know that if this past year has been my worst, I have been extremely fortunate and had a very blessed life.

On January 1st 2012, I wrote an eight page-long goodbye letter to my husband which included all the details of our online accounts, passwords, paperwork etc., things with which I have always dealt. It also laid out my thoughts about my funeral and asked him to make sure to use my savings to pay for my family and E. to travel from Ireland, if needed. Really morbid stuff.

Thank you for your love, kindness, caretaking, honesty, patience… You gave me everything I’ve ever wanted in a friend, a partner, a husband. I am so lucky…

I had never experienced anything like what I was going through and I didn’t think I’d come through it. At the time, I had been diagnosed with malaria. Never did it occur to me, if I did survive, that I’d still be sick a year later. Never did it occur to me that I might be sick for years and years to come. I work every minute of every day to get better and that is what I will continue to do. Every day, in so many ways, I try to help myself heal:

I wake up slowly, gather my strength, set my intention for the day. I open my blinds so moisture doesn’t collect on the window panes, I turn on my air purifier so it can work its unseen magic during the day. I wash my mouth guard, cpap mask and machine parts ~ yes, every day. I brush my teeth sitting down. I wash my face, pick off the leftover adhesive (from the tape I put over my mouth at night) and apply a calendula cream that helps my skin heal. I put my dry eye drops in and use my antihistamine nasal spray. I make tea with stevia and soy creamer (no sugar, splenda or dairy allowed anymore) and take my first supplements of the day with filtered water (the top rated (cheap) filter by Consumer Reports). I check the temperature and the humidity in the house. My body has no concept of comfortable anymore. I could be feverish for no reason or freezing in the heat. Or sweating face, but icy toes.

I work on the computer for a bit, sitting in front of a light box. Breakfast is a smoothie with flax, berries, and walnuts or homemade granola with fruit and almond milk. I seem to have completely conquered my hypoglycemia by switching from rice milk to almond milk and adding fiber to my tea. Afternoon beverage is decaf green tea, per the Good Doc’s orders. I do any chores I can manage. I try to meditate three times a day. This is forced rest… or preemptive rest. Regardless of how I feel, at the very least, I lie down twice each day for an hour, usually at 1pm and 6pm. I have a room ~ not my bedroom ~ where I have peace, privacy, a small futon, a wedge pillow, blanket, eye mask, headphones and CDs. These meditations are the only reason I can get through the day. If I don’t recharge, flat on my back with my eyes closed, I will start to deteriorate: get shaky, slow down cognitively, become achy, stiff and develop a headache.

yoga room

In between 2pm and 4pm, if I’m up to it, I do laps around my house with the dogs. I’m currently not up for more than 4 times around ~ about 400 steps. I wear a pedometer all day, every day.  I am diligent about keeping my core temperature up. For those few minutes outside, I put on my heated vest, hat, scarf, gloves, Uggs. I never want to go back to the debilitating chills of this time last year. If I feel I have some strength, I do every little thing possible to “exercise” so my muscles don’t decondition any more. I squeeze the squeeky dog ball in both hands. I slowly and carefully scoop dog poop. I focus as many miles away as possible ~ to the skyline or horizon ~ since I spend so long indoors only looking six feet ahead. I breathe deeply ~ consciously ~ to get my dose of outside air. I notice everything: planes tracing lines in the sky… the sounds of our neighbours… plants, birds, trees that I never paid much attention to before. And I am grateful for every step, always silently thanking the universe for keeping me on my feet, for allowing me to have the health I still have.

last leaf

Even if I can barely move, I try to stretch my muscles as often as possible. I soak in an Epsom salt bath (2 cups) for no more than 30 minutes (I am told any more than that and the badness leeches back into your muscles) and then I do gentle floor stretches, as well as my neck traction. I dry my hair sitting down. My lunches and dinners are predictable, boring and really pretty disgusting after months and months on end. No grains of any kind besides oats, no eggs, dairy, legumes, potatoes, tomatoes or cod. No msg, obviously, and I’m desperately trying to cut down on sugar. I add turmeric to virtually everything I eat. If I had the energy to cook, I would be making the most creative and tasty dishes, but, as it is, I rely on my husband and quick snacks: apples, nuts etc. Basically, I eat enough to take my supplements. I drink two tablespoons of tart cherry juice with dinner every night and usually drink ginger tea last thing before bed. I don’t watch tv later than 9:30pm, I practice good sleep hygiene and I never get to sleep later than 11:30pm.

My year felt like one third survival, one third denial, and one third a carefully constructed balancing act. A tightrope walk with no end in sight and any time you fall off, you don’t go back to the beginning ~ you go back much further than where you started. So, you don’t know how far the rope goes in front of you or behind you. Now: Turn that tightrope so it’s vertical. You aren’t walking forward, you’re clinging on with your hands, trying to climb upwards into the clouds… an abyss below you. Just one hand over the other. Don’t look up, don’t look down. This moment, this breath.

Holding onto a rope

2012 Wrap Up:

January: Saw endocrinologist; Mom visited.
February: Saw infectious disease doctor; started seeing a therapist; started meditating.
March: Saw rheumatologist, saw allergist, saw gastroenterologist; started low fat diet; changed birth control pills; eliminated pain killers.
April: Saw naturopath; started gluten-free and dairy-free diet; my friends’ sweet baby A. was born ~ the highlight of this year.
May: Saw second infectious disease doctor; Mom visited; stopped working and left career.
June: Saw optometrist; got CT scan.
July: By best friend E. visited; my sister got a new puppy (my new nephew); dear friend of the family’s, M.B., died.
August: Started seeing the Good Doctor; saw chronic fatigue “specialist”; started automimmune elimination diet.
September: Started acupuncture; saw sports medicine doctor; had sleep study done; Dad visited; became housebound.
October: Got brain and cervical spine MRI, Mom visited; brother T. visited.
November: Saw obgyn; started using cpap.
December: Brother A. visited; sister and J. visited for Christmas; dear old friend, D.H., died far too young.

This was my year. I know there is a big world out there with a lot bigger things going on, but this was my year. Doctors, tests, symptoms, setbacks, births, deaths, revelations about myself, revelations about our bodies, grief, joy, fear and more grief. And I know: it could have been much, much worse. What I see when I look at this is: my brothers, sister, mother, father and best friends all came to visit me. They journeyed across the city, country or world to my house to support me. In doing so, they healed me. I am very lucky. I am very blessed. With this kind of support, I can be the rock again. I will feel like I can weather any storm again. Maybe that’s what the new year will bring. I will notice everything, consider anything, expect something, but fear nothing. Welcome, 2013. You’re going to look very different from last year.

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!

F.E.A.R. … for everything, a reason.

I have so much to say and nothing to say. I have never been so emotional in my life and never been so numb.

Quick recap: while having a “good day” last Thursday, I met with my old bosses, went to a two-hour doctor appointment and walked around the dog park for an hour. For five days afterwards, I was in extraordinary muscle and bone pain, had crushing headaches, could barely move, couldn’t stop crying and have had night sweats every night. Last night I took a quarter of a Norco and it took the edge off the pain. A quarter of a pill! People take, like, ten of those a day. I don’t get it.

After researching the number of cases of M.E. that are significantly worse because of enforced exercise or the patient pushing themselves, I am hanging in this limbo of fear. Fear of unintentionally overexerting myself and setting back my recovery permanently. Can I not go to the dog park? Should I not be talking on the phone? Should I stop people from coming to my house? Because the second I feel better and the pain eases up, I want to do things. And by “things” I mean take a walk, try cooking a meal, fold the laundry, play with the dogs. And what if I try drugs that make me feel better? It’ll be even harder to refrain from activity. God forbid my pain is taken away and I walk upstairs too quickly or laugh too hard. I’m also in fear of losing all muscle mass, all flexibility, all joint movement, and, scariest of all, fear of irreparable damage to my bones. Years ago I was diagnosed with osteopenia in my hips after a bone scan. I think it was 0.1 point off putting me in the osteoporosis range. They told me to take calcium, vitamin D and do weight-bearing exercise. Did I do any of those things? Nope. I started taking vitamin D about 6 months ago, I still don’t take calcium and now I’m not eating dairy and I’m unable to do weight-bearing exercise. Or cardio, obviously, which is sorely needed, since I’ve never done cardio workouts. My job was my exercise ~ running around restaurants ~ and yoga, too, back in the day. I’m also in fear of the drugs that might make me feel better. I don’t want to try 20 antidepressants to find the right one, I don’t want to put on 30 lbs from Lyrica or gabapentin, I don’t want to feel groggy and crazy from sleeping pills, I don’t want to deal with weaning off and withdrawal symptoms… But, most of all, I’m terrified of an allergic reaction. Having experienced anaphylactic shock, swollen tongue, not being able to breathe, syncope, headaches that feel like you might die, low pulse etc… I know how scary it is. And I hope I never have to use my Epipen because I HATE epinephrine. It feels like I’m jacked up on speed and not in a good way. It feels like it stops my heart and then zaps it back at 5 times the normal heart rate ~ I won’t even let them use it at the dentist, I’d rather have a 100 injections in my gums than just one with epinephrine that’ll keep the anesthetic in my body. Finally, despite my 8 commandments, I am in fear of being home-bound (not homeward-bound, big difference. I wish I was…) for the rest of my life and losing my mind. Or, worse, being drugged out of my mind and my husband having to take care of me and losing his mind. Or, worse, getting worse in this disease or another disease or getting a cold or a chest infection or food poisoning or any of the millions of things that could make this so. much. worse. … and not caring anymore whether I even have a mind to lose.

So, my doctor appointment today. I had a physical and a stress test. They told me to fast for blood work, which turned out not to be necessary. I don’t know about you, but, not having my tea and breakfast in the morning messes everything up — and now that includes my supplement schedule — so, I was not functioning. I was shaking and achy and cold. My blood pressure was 84/60, my temperature was 99.4. A doctor finally touched me! He poked and prodded and said my labs looked fine (cholesterol, liver). Shocker. He wanted to do X-rays of my spine but I asked him to hold off because I have had a LOT of radiation lately and in life. He referred me to a neurologist and a rheumatologist (more doctors, yay) and gave me an Rx for Ambian CR and Lyrica.

I said, ” You’re starting me at the lowest dose of Lyrica, right?”
He said, “Yep, 75mg twice a day.”
I said, “If there is anything lower, PLEASE start me lower.”
He said, “Ok, 50mg twice a day.”
I said, “Ok, 50mg once a day.”
“Ok…50mg once a day to start with…at bedtime.”
“No, in the afternoon so I can monitor the effects.”
“Ok, fine…to start with. See me in a week so I can see how you’re doing on the Lyrica.”
“See you a week after I start the Lyrica?”
“Yes, which will be in ONE week because you’re starting it tonight.”
“Don’t count on it.”

That’s the exact conversation. I then went to do the stress test. They hook you up to electrodes and put you on a treadmill. It took about 45 minutes to get to the standing on the treadmill part. For fuck’s sake, I don’t care if you see me take my shirt off, you don’t have to explain everything in minute detail at a snail’s pace, I know what an electrode is, I know what a heart is, I am freezing and hungry and I’ve had no tea and I need to get home and sit down, hurry up! Here’s the sad part, I walked at 1 mile an hour for 2 minutes. It felt fine, like being at the dog park. Then she increased it to 2 miles an hour. This was fast for me. I don’t walk this fast since I got sick. I did it for 2 minutes and then the incline increased. I was fine, but starting to get worried about the repercussions. My thighs started to burn, but I was fine, it actually felt good. Burning muscles! What I would give to work my muscles so hard they burned from the effort and the next day I would be sore and think, “I had a great workout.” But, after the past 5 days, I was so scared of what this atypical movement would do to my body. The fear of tonight, the fear of no tomorrow. At the 6th minute, when the incline went up again and I really wanted to push myself, see how high my heart rate could go and feel my breath quicken, I quit. I felt okay, I felt I could have pushed through. I probably even could have run briefly, but I was too scared of what it would do to my muscles and how it might set back my recovery. The monitor moved and blipped steadily with my heart… But it didn’t show it breaking.