My Visit to Dr. Chia

Okay, okay, stop begging, I’ll tell you about my appointment with Dr. Chia. I can’t believe this took me so long to write, but I’ve been plugging away a little bit, day by day. I can save you some time and tell you straight away that it was not worth the trip. I don’t really feel like I learned anything new or found access to treatments I couldn’t have tried without him. That doesn’t mean I regret the trip, it just means, if someone else in my position asked my advice, I would say, “Save your money and your energy.” The journey, for me, became the challenge early on. I wanted to know if I could do it. I wanted to test my boundaries, I wanted to see if I could leave these four walls and find out just how bad the payback would be. It was also about testing a different location, spending time with my mother and giving my husband a break. So, I had a lot of different fuels feeding the engine, if you know what I mean and, without even one, I might not have made the trip. In the end, because I left early and Dr. Chia didn’t really give me anything, it was purely the challenge. And I’ve decided that is enough. It bolstered my confidence and reinforced how resilient I am — we are.

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With my mother outside Dr. Chia’s office.

Here’s what I thought about Dr. Chia before seeing him: I knew his son was sick with ME and recovered. I knew that Dr. Chia believes that enteroviruses are the root cause of this illness and that he has conducted studies that supported his theory, but the rest of the ME research community hasn’t taken up that torch and done bigger, better studies to replicate. I thought he would offer Equilibrant, his Chinese herb formula with which many people have had some success, and he might consider antivirals. My main impetus for seeing him was to get the testing that none of the other 40 doctors I’ve seen has done and also to see whether he thought I was a candidate for antivirals. Of course, I forgot to ask him about antivirals because I forget everything when I’m in a doctor’s office.

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My mother holding the massive binder of test results that we carted down to California and then never opened.

My appointment was at 4:15pm on a Friday, so I was worried about rush hour and LA craziness, but Google maps was accurate and it only took us half an hour to get there. His office is in a nondescript brick building in a sort of strip mall in Torrance, CA. I’m a big fan of Stephen King and liked that the office was in an area named after the possessed protagonist of The Shining. ūüėČ The waiting room was barren. We (my mother and I) waited about 20¬†minutes¬†and then went in and had the normal nurse stuff done. I noticed she wrote on my file that I was there about “chronic fatigue” and I mentioned that it was actually ME ~ or even write “CFS”. She said, “Well, it doesn’t matter because he only sees patients with your condition.” Sigh.

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We waited probably about another 15 minutes¬†for Dr. Chia and, when he came in, he was off like a rocket. He did not stop talking for an hour and 15 minutes. After about 10 minutes,¬†he said I could record him, thank god, because I didn’t remember to ask and I have no memory of anything he said in those first few minutes. Dr. Chia was kind and pleasant. Not in any way intimidating or arrogant. I guess I would call him dogmatic without the ego. He seems slightly frustrated that nobody else realises enteroviruses are the root cause of so many chronic illnesses and told us many stories of other patients and studies that support his contention.

A few weeks before my appointment, I sent him a letter, a chronology of my health history and a list of my symptoms. He said that was extremely helpful and asked me very little in person about my illness, instead, he just ran down the list and discussed how my immune system had collapsed. I couldn’t help thinking none of this needed to be done in person since I was basically just a set of ears, but I know the law says I had to be there in the flesh. He also did a quick physical exam and neurological work up.

Here were his main points about my history:

  • As an infant, my immune system shifted into Th2 dominance with pneumonia and ear infections and asthma, which is an inflammatory disease. Instead of just fighting off infections with an increase in the Th1 branch of the immune system and then resetting back to equilibrium, mine shifted into Th2 and has been continually off kilter my whole life as it got hit by different viruses (bronchitis, ill while traveling in Central America, viral gastroenteritis from lake in Virginia etc. etc.). He gave an example of people who encounter the polio virus: just like the lake in Virginia, only a few out of hundreds exposed to polio will become crippled and the difference is the amount of gammaglobulin I¬†(and others)¬†have and my compromised immune system. He said enteroviruses are the second most common infection after the common cold and that viruses are often transmitted through water. He gave the example of Joseph Melnick at Baylor University who studied viruses that live in water from sewage contamination and spread to humans through shellfish, showers, colds and swimming. He also said the Russians wrote a paper that concluded the most common risk factors for contracting meningitis are swimming (30%), camping (20%), contact with sick people, and drinking well water.
  • Doctors repeatedly prescribed antibiotics for viruses and worsened my situation. The dark circles under my eyes are typical of this.
  • With Th2 dominance, comes allergies.
  • Night sweats are a classic sign of Th2 dominance ~ along with pain and sore throats, they are my immune system trying to fight off the viruses. But, “viruses are like weeds” and replicate exponentially. He said post-exertional malaise happens because activity causes viruses in the muscles to become metabolically active and replicate, causing pain. “The more activity you do, the more viruses replicate.”
  • Tonsillectomies are very common in ME because the body is fighting off the viruses and causing chronic sore throats (my early teenage years).
  • Vaccinations commonly cause ME and relapses (I took every vaccination I could get my hands on because I thought they were protecting me and didn’t realise they’re not for everyone).
  • He suspects a brain stem issue because of vasovagal syncope history, neck problems and dysautonomia symptoms.
  • He said that he has seen cases of ME caused by invasive dental work alone, so he thinks my history predisposed me, but having acute bronchitis, viral gastroenteritis, lots of dental work and then the flu shot all in the space of 3 months definitively tipped my immune system to ME. He said, “The flu vaccination is what did you in.”
  • My tender abdomen he said was my terminal ilium and that was typical with enteroviruses living in the wall of the small intestine.
    He said I might have contracted new infectious illnesses in the past 3 years, but, whereas healthy people fight off viruses locally (i.e: facial symptoms with a cold), I fight it off systemically and all my ME symptoms flare. My mother and I heard loud and clear that contracting another virus would be incredibly dangerous for my recovery and my future health.
  • He said that there was a sewage leak into the lake at Incline Village in 1984, before the initial ME/CFS outbreak and that everyone got sick in the summer when they jumped in the lake. He said he is the only person in the US working on enterovirus research and he has found the virus in the blood and stomach lining of patients and has also done studies (injecting mice with enteroviruses and those that were initially immune deficient died). He said the CDC will soon be reproducing his work, he hopes.

Blood test results:

  • My T-lymphocytes are okay. CD4 is a little low.
  • Echoviruses, chlamydia pneumoniae, CMV, Creatine Kinase, IgA and CRP are all negative or within range.
  • Coxsackie B 4 and 5 are high. Type 4 is very high.
  • IgG (gammaglobulin) is low. All 4 subclasses. These are the most important antibodies to neutralise enteroviruses and maintain a healthy immune system.
  • HHV 6 IgG antibodies are very high.

Treatments:

  • He mentioned interferon, but said it is a very difficult treatment and short-lived.
  • He mentioned Epivir, an HIV drug that helps about 30% of the time, but didn’t want me to consider it now.
  • He told me to watch out for lakes, rivers, shellfish and not to drink the LA tap water.
  • He said I could try sublingual vitamin B12, coQ10, magnesium and vitamin D (all of which I take except B12).
  • The most important treatment he thought I needed was 5 – 15 grams of intravenous gammaglobulin to replace what I don’t have and modulate my immune system. He kept reiterating how much sicker I would be if I caught another virus, so he thought I should get IVIG twice a year and again whenever I travel anywhere (although, he said I probably shouldn’t travel). He wanted me to see an immunologist to get it, but it’s very expensive and the immunologist would want to inject me with a pneumonia vaccine to determine whether IVIG was necessary by my immune response two weeks later (I find this all very frustrating and wish that Dr. Chia could just give me a requisition form to take to a Seattle hospital so I don’t have to go through the rigmaroll of finding another specialist to determine that I need a treatment that this specialist says I need! It’s also frustrating because I won’t let a vaccine near me for the rest of my life and some random immunologist probably won’t take Dr. Chia’s word for it). If I can’t get IVIG, he said I should get 2 mililiters of intramuscular gammaglobulin, which will last for a few months.
  • He also gave me Equilibrant, his own proprietary blend of vitamins, minerals and herbs, and told us the story of his son’s recovery once he was taking 9 pills a day. He wants me to start on ¬ľ pill for a month, then move up to ¬Ĺ for another month. I should expect an increase in my symptoms for 7-10 days. My problem with Equilibrant is that it has a bunch of fillers and crap in it: Dextrose, titanium dioxide, Yellow #5, Blue #2, Carnuba Wax etc. I still think I’ll try it, but I haven’t gotten the nerve up yet.

Honestly, the best thing he said to me during this whole appointment was, “You’ll get there.” He said since I’m so much better now than I was last year, my body is recovering and I just have to try to avoid getting another virus. After hearing Dr. Peterson say that he has never had a patient recover, it was nice to hear Dr. Chia say that I would get there…. I know “there” will not be where I was pre-ME, but I’ll take pretty much any there over here.

What I’m doing now that may or may not be making a difference.

This morning, I had a high resting heart rate of 67 bpm. Yesterday, by comparison, it was 56. Since I’ve been tracking my morning HR, it has been a fairly good predictor of how stable my body will remain throughout the day. I anticipate that today it will be a little more difficult to go up and down stairs, I’ll have to rest a bit more, my blood pressure might be lower and I’ll undoubtedly take fewer steps than my current norm. I can tell by how achy I was this morning. But, last night, while getting ready for bed, I was happy and hopeful. I was feeling like I could really get better enough to live again and I vowed to write a post today about all the things I do that may or may not be helping.

I’m a completely different person than I was over Christmas. I thought I might never talk properly again, walk more than a few shuffling steps again, that I might just die in my room. I’m so happy now, my skin looks good (the dermatologist’s protocol worked!), I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but I’ll list everything I do here so that I can reference it in the future and maybe it’ll help someone.

  • I stopped panicking about my sleep. Of course, if I get fewer than 4 hours, I’m upset and worried, but I seem to be able to sleep pretty well from 12am to 5 or 6am, so, I’m going to trust my body and be okay with that. When I’m crippled and hazy from lack of sleep, I remember the eternity I spent in viral, malarial night sweat hell. There is not much these days that is as bad as my nights were from November 2011 to early 2013. I will never be able to adequately describe how sick I was as my body tried to rid itself of whatever evil has invaded. So, I will take constant awakenings and nightmares in a DRY bed any day.
  • I track my resting HR every morning before getting up and before taking my thyroid hormones.
  • I lie in bed for a few hours in the morning, cuddling with my dogs and reading, with the shades open to let light in and set my body clock.
  • I wear my pedometer every day and have been taking 1300-1500 steps a day for the last two months versus 300-600 in December.
  • I usually have my light box on for about 45 minutes while I’m on the computer with my morning tea.
  • I only drink teas that I have researched and I trust the companies (their growing procedures, their tea bag materials– here’s some good help) and, besides my morning decaf black tea, I only drink teas that can supposedly help with one of my symptoms (tulsi, roasted dandelion root, ginger, chamomile, peppermint, licorice, fennel).
  • I drink a vegetable juice every few days in the morning, on an empty stomach (following these tips).
  • I do preemptive rests, as well as recovery rests. I lie down a minimum of 3 hours a day (on top of the 12+ hours I’m in bed at night). Ideally, this would be in 3 separate hour-long meditations, but it often winds up being 2 sessions. When I’m not doing very well, I can usually get out of bed for a few hours in the morning and the evening, but I might spend from 12pm to 7pm in bed, on top of 10pm to 10am. My preemptive rests consist of relaxation and meditation. They work by recharging my body and brain in what feels remarkably like what I imagine an old crappy phone gets when plugged in for an hour (my best friend described my body this way when I was still functioning and not housebound and I didn’t quite get how accurate it was until I spent a year “plugging in” to bed throughout the day). Recovery rests are different. My initial warning signs these days are neurological: my voice gets very weak and I slur badly and can’t find words. My head hurts, vision gets blurry, tinnitus cranks up, coordination is off and I get internal tremors. Everything takes immense concentration. The worst symptom, though, is what I call my “buzzy head.” It’s like internal tremors in my brain. My forehead feels numb and my brain physically¬†feels like it is buzzing and vibrating… like every mitochondrion is rocking back and forth, sputtering and smoking, trying its best to spit out a little more energy– billions of microscopic engines, overheating, gauges in the red, pushed to the max. When this hits, it’s a really bad idea to push through and I go straight to bed and usually fall into a brief in-and-out, trance-like sleep as my brain recharges.
  • I do breathing exercises every day. While resting and during meditation, I do deep breathing techniques that I learned from a video to help with MS pain. They help strengthen my diaphragm and increase oxygen and carbon dioxide. Then, throughout my rests (and any time I think about it throughout the day), I practice abdominal breathing to help settle my nervous system and calm the fight or flight response, which we live with permanently when we have central sensitization issues. Jackie over at lethargicsmiles has a great description of this type of breathing here. I’ve also read that some people benefit from purposely slowing down their breathing to help blood gas absorption.
  • I change up my meditations depending on how bad my symptoms are. Sometimes I need complete silence and I lie very still with ear plugs in. Sometimes I just need white noise and I listen to Kelly Howell’s CDs that use binaural beats to stimulate alpha, delta and theta brain waves. All other times, I alternate through yoga nidra, Buddhist meditations, guided imagery, affirmations, body scans and simple breath meditations. Find some more links at the bottom of this post.
  • I loosened my routine and relaxed my demanding brain: if I need to spend all day in bed, that’s okay. I go outside when I can, I eat junk food when I want, I don’t beat myself up if I can’t bathe for a week or don’t go to bed until midnight.
  • I made peace with my cpap. I try to wear it every night, but, if I take it off after a few hours, it’s okay. And, if I don’t wear it at all, it’s okay. I know I feel worse when I don’t wear it — I keep that in mind and try to be organised about washing it early in the day because, before bed, I often don’t have the energy — but, when I don’t wear it, I don’t panic about the hundred million apnea events that woke up my brain while I “slept”. It’s okay. I’ll be okay.
  • I try to get to physical therapy every month or so, massage every two months (I would like these to be much more often, but can’t justify the money) and I was going to start regular hydrotherapy, but, unfortunately, after the first session, I realised it’s not worth the expense ($83), so I will try to mimic it at home (basically, hot and cold towels and electrostimulation).
  • Food: I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, nightshades, nuts, seeds, eggs, and no high-histamine foods, such as pork, tomatoes, eggplants, spinach, bananas, vinegar, fermented foods, processed meats, tinned fish/meat etc.). I was strictly low-sulfur for a month and that might have contributed to my feeling better, but I have since stopped that. I don’t beat myself up for my Kerrygold addiction and I don’t worry about my constant snacking and the fact that I go through sweet potato chips and plantain crackers by the bag-load and can’t seem to quit Salted Caramel Chocolate coconut ice cream. Life is too short. We buy organic and I eat a huge variety of veg and herbs. We always have fresh parsley, basil, rosemary, thyme, cilantro, ginger… We buy meat from farms we’ve researched and distributors we trust and make a lot of bone broth, which I drink everyday with a gram of salt in each mug. I recently switched from non-stick pans to stainless steel and cast iron. I drink filtered water. And I keep a detailed food and symptom journal (which, really, has told me nothing). That’s more than I ever did in the first 39 years of my life, so I’ve come a long way.
  • I’ve switched some products: I use Tom’s deodorant and toothpaste. I use supposedly less toxic shampoos, soaps and sunscreens. I use a face wash, moituriser, dish and clothes detergent that don’t make me gag with perfume and are kind to sensitive skin.
  • I use dry eye drops throughout the day and the Rxs from my dermatologist on my face. At night, I put castor oil over my liver and Badger sleep balm on my throat. When my neck is acting up, I use my TENS unit, cervical traction¬†and Tiger Balm neck and shoulder rub. And then there’s vitamins and supplements…
  • Here’s what I take currently:
    • Morning:
      • thyroid hormones (T3 and T4)
      • Probiotic
      • 2.5mg Prednisone
    • Before meals:
      • Thorne Bio-Gest (for gastroparesis)
      • Digestive Enzymes (for gastroparesis)
      • 250mg yucca (for high ammonia/CBS mutation)
    • After breakfast/mid-day meal:
      • 500mg Acetyl L carnitine
      • 100mg CoQ10
      • 36.5mg riboflavin 5‚Äô phosphate
      • 15mg zinc + B6
      • 500-1,000mg vitamin C
      • 100mcg molybdenum¬†(for high ammonia/CBS mutation)
      • Thorne trace Minerals
    • Sporadically:
      • 1 tsp Calm magnesium + calcium
    • After dinner:
      • 2,000mg fish oil (1,000mg EPA, 50mg DHA)
      • 4,000iu Vitamin D3
    • Before bed:
      • 400-600mg magnesium glycinate chelate
      • GABA+theonine
      • 1mg Melatonin
  • I am soon going to add charcoal, Thorne Medibulk, biotin, and a second probiotic with histamine-lowering strains of bacteria.

Something is making a difference. Or maybe it’s just time. Who knows? But I will continue to persevere.

30 Things About My Invisible Illness You May Not Know

Well, I’m a few days late (and more than a few dollars short). I’ve been working on this post for a week while not feeling well, but I’m determined to finish.¬†Invisible Illness Awareness Week was last week and, in an effort to raise awareness, invisibleillnessweek.com¬†has put together the¬†‚Äú30 Things About My Illness‚ÄĚ questionnaire below. The website¬†offers support to patients and caregivers through articles, podcasts, illness lists and links to associations and resources. You should check it out!

30 THINGS ABOUT MY ILLNESS:

1. The illness I live with is:

Myalgic Encephalomyelitis. I have other conditions, such as mast cell activation disorder, thyroid disease, dysautonomia, hypoglycemia, IBS, dysmenorrhea, and chronic intractable migraines but these are speed bumps in relation to the Mount Everest that is ME. Undoubtedly, all these problems are connected in some way.

2. I was diagnosed with it in the year:

I was diagnosed about one year ago.

3. But I had symptoms since:

ME hit me one night like a freight train around 11pm on Halloween night, 2011. One hour I was fine, the next hour I was in the grips of what I thought was a very bad virus. Chills and drenching sweats lasted all night and… the rest is history.

Years before that, I had dealt with thyroid goiters, anaphylaxis and vasovagal syncope, but they were just blips in my otherwise healthy, normal life. ME changed that.

4. The biggest adjustment I’ve had to make is:

I could say losing my career, my social life, traveling, my income, the future I envisioned… But, really, the hardest adjustment has been a life with minimal energy expenditure: the loss of walking, running, talking exuberantly, emoting, gesticulating… I hate this still life.

5. Most people assume:

Most people assume I’m being antisocial. Most people assume that I worked too much, hit a wall and walked away and am just uncommunicative. Only my family and closest few friends know the extent of what happened to me.

6. The hardest part about mornings are:

The distressing, sinking realisation that I’ve woken up too early (and won’t go back to sleep) and had a bad night. Feeling dizzy before I’ve even opened my eyes. Being greeted with a headache and neck pain before I’ve even sat up.

7. My favorite medical TV show is:

House!! And any real life medical show like Trauma: Life in the ER. I’ve loved that stuff my whole life. They used to show real operations, graphic and unedited, on some show in Ireland when I was young and I loved watching. I’m not squeamish; I always thought I’d be working in an ER.

8. A gadget I couldn’t live without is:

My smart phone. It’s my lightweight connection to the rest of the world: news, blogs, emails, texts, photos, videos and calls. Plus, it has all my meditation CDs on it.

9. The hardest part about nights are:

For the first year I was sick, nights were lonely, terrifying, desperate, viral horror shows. There are not adequate words to describe what my nights were like. Now, the hardest part is the fear that I will not sleep well and will wake the next morning feeling worse.

10. Each day I take __ pills & vitamins.

I usually take about 26 supplements a day (double that for the number of actual pills). Currently, I’m on a vitamin and supplement hiatus, so I am only taking probiotics, magnesium, melatonin, Zyrtec, nasal spray, topical antibiotic cream, and a few times a week, when I have a headache or can’t sleep, I take Tylenol, Unisom, and Tizanidine.

11. Regarding alternative treatments I:

I have tried most of it: acupuncture, massage, craniosacral therapy, reiki, energy healers, meditation, breathing exercises, diet, stretches, Chinese herbs, supplements blah blah blagh. I don’t know what constitutes “alternative”, but I would do¬†anything to get better.

12. If I had to choose between an invisible illness or visible I would choose:

I have a half-written blog post called “Visible Illness” because I look sick ~ or, at least, I look different than I used to ~ and I have caught myself feeling jealous of the “healthy”-looking ME patients I have seen online. However, my illness is invisible in the sense that nobody can see just how bad it is by looking at me ~ especially during the first year, when I pushed through everything to go to work.

Which would I prefer? Neither. Illness is evil and, ultimately, nobody can ever comprehend a sick person’s suffering, regardless of how bad they look on the outside.

13. Regarding working and career:

I never stop dreaming about my next career. I have a different idea every day. I miss working, I miss having responsibility and helping people, I miss being good at something, I miss having the security of an income.

14. People would be surprised to know:

Those that haven’t seen me in a while would be surprised to see that I have gone from an energetic, talkative, happy, demonstrative, busy person to someone who moves very little and doesn’t leave the house. Those close to me might be surprised to know just how black my blackness was this past year and how often I thought about suicide (it took all my guts to write that word. It’s shameful and scary, but true).

15. The hardest thing to accept about my new reality has been:

That I can’t exert energy. That’s it. It rules all else. I can’t find a new job, I can’t make plans for a different life than the one I had imagined, I can’t socialise or cook food or deal with banks or disability or do anything to adapt and move on. I only feel ok if I am flat on my back, not moving. But I keep trying to make progress and those endeavors always cause me to be in pain. And I’m intolerant to painkillers. So it’s a continual try-to-gain-ground-get-knocked-down cycle.

16. Something I never thought I could do with my illness that I did was:

Admit it – admit I was a sick person. Also, there was a time when I wondered if I’d ever laugh again. When the headaches ease up, laughter returns. It’s glorious.

17. The commercials about my illness:

There are none, but there are commercials about fibromyalgia and, of course, they show women able to move freely if they take Lyrica. Imagine the only symptom being achiness! Imagine a pill taking care of it! Sign me up!

18. Something I really miss doing since I was diagnosed is:

See this post. Dancing with my dogs on the beach, eating whatever I want, staying up late, talking nonstop, getting excited, getting angry, having a career, dreaming up future plans, driving myself places, traveling, having financial security… See the recurring theme?

19. It was really hard to have to give up:

I want to say everything in #18, but I’ll change it up and say getting dressed and feeling pretty. I miss a great pair of jeans and make-me-feel-tall boots and thinking my eyes look bright and generally feeling attractive.

20. A new hobby I have taken up since my diagnosis is:

Meditation. I couldn’t live without it now.

21. If I could have one day of feeling normal again I would:

Only one day? So not enough time to go to Europe? Can I plan this day in advance and get my loved ones to come to me? Ok, I’ll assume that’s a yes. Then I would get everyone I love to Seattle in advance and on The Day we would hike, talk, laugh, play games, eat a lot, get rip-roaring drunk, never have to rest and then sleep soundly, deeply, peacefully ~ without a cpap and with my husband and dogs.

22. My illness has taught me:

How under-equipped society is to help the disabled, sick and elderly. It is astounding and harrowing to realise how difficult and time-consuming it is to drive, park, get to a doctor’s office, get home help, get financial help ~ everything! And, when you’re sick, everything costs more, so what happens when you can’t work? I worry about old age all the time.

23. One thing people say that gets under my skin is:

When people say nothing. When friends don’t want to “burden” me with their own problems or don’t contact me because they don’t want to “impose” or don’t text me because I haven’t responded in days/weeks and they think the ball’s in my court or that they don’t want to keep “bothering” me. It is incredibly comforting when someone asks questions about my illness or vents to me about their hardships or gossips about work or continues to let me know they are thinking about me. Once in a while, I would love my husband (and family) to take a break from being the strong caregiver and wallow in a bit of mutual mourning: “This is so fucking unfair! We had dreams and plans! We had only just stopped living paycheck to paycheck! You were so alive and I am turned inside out to see your life force disappearing…” Maybe it’s selfish, but, someone else screaming at the sky would make me feel a little less alone.

24. But I love it when people:

Remind me that, even in this diminished capacity, I am still vital and worthy of being a friend.

25. My favorite motto, scripture, quote that gets me through tough times is:

“As long as you are breathing, there is more right with you than wrong with you.” ~ Jon Kabat-Zinn

Also, my mother once told me she had read that if you have one pain-free day, there is the possibility of being permanently pain-free. I think about this all the time on days like today:¬†Just because I’m having a bad day today, it doesn’t mean I will always have bad days. There will be days again without headaches. There will be days when I can move more freely.

26. When someone is diagnosed I’d like to tell them:

You will improve. That was the first line of an email someone wrote to me and I didn’t read any further, I just closed the computer and wept. I needed to know that life could and would be bearable one day.

Also, I caution anyone recently diagnosed to not read all the horror stories about ME. It is good to raise awareness about the severity of this disease,  but, after doing tireless research for months, my fear drowned out what my body was whispering. Stop pushing yourself, rest, listen to your body and believe you will improve. 

27. Something that has surprised me about living with an illness is:

How many of us there are ~ in every country, of every age, ethnicity and socioeconomic standing. I am amazed and grateful for how many of us are online, sharing advice and giving support to each other. Sometimes, you lot are all that gets me through.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Not leave me. My husband, family and a few friends have wrapped themselves around me ~ physically and virtually ~ and given me the security that I have SWAT team back-up in this war.

29. I’m involved with Invisible Illness Week because:

I’m quoting Linds: “I think it‚Äôs a great way to bring much needed awareness to the struggles others endure. The illness is invisible, not the person.”

30. The fact that you read this list makes me feel:

Honoured. Or honored, depending on where you learned to spell. ūüôā

Also check out my other blamily members’ answers to this questionnaire: Jess, Marie, Christine, Luminescence, Trisha… Who have I missed? Let me know if you posted this questionnaire to your blog and I will link it here.

Doctor follow-up: symptoms, sleep, diet.

I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.

I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it:¬†Scooter? Adding back legumes? No supplements? Weather? Period?¬†This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.

Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:

An average of 8.5 hours sleep? First time ever in my life!

An average of 8.5 hours sleep? First time ever in my life!

38 mins awake, on average,  when it used to be 2 hours!

38 mins awake, on average, when it used to be 2 hours!

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).

If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).

She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)

Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).

That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and¬†remember me.

My beautiful niece sent me this card. :)

My beautiful niece sent me this card. ūüôā

Hope for a great sea-change

One of the things I never realized about chronic illness is that it is easier to drive than it is to take a shower. If you see someone driving their car to an appointment, you might think they’re doing okay, but that person may have needed help to wash their hair that morning. And, by “morning”, I mean afternoon because it probably took a number of hours to get from waking to bathing.

I can drive myself to nearby appointments and I can talk for the whole time I’m there – half an hour sitting up with a doctor, an hour lying down with the physical therapist – but, if someone witnessed this, would they understand that I couldn’t write a blog post that day, I had to put on clothes in increments over the course of an hour, I had to rest in a dark, silent room immediately before and after the appointment, and, if I had slept poorly, I would have canceled?

My husband has been washing my hair lately. I sit on my seat and he leans awkwardly into the shower while I rest my forearms on my knees and hang my head. He also helps me dry my hair. I sit on the toilet in much the same position as I did in the shower and he stands above me with the hair dryer.

My sister comes over to help me with laundry. It’s been a long time since I’ve expended the energy needed to fold or hang clothes, so there are wrinkled piles of clean, dirty and not-clean-but-not-dirty-enough-to-be-washed items in various rooms. I never thought my husband would be scrubbing my scalp while I sit naked and motionless or my sister would be sorting my underwear while I am supine, watching.

It seems like a new low, especially in light of the fact that I’ve been housebound for a year, I’m walking under 1000 steps a day and it takes about 15 minutes of activity to wear me out. But I don’t think it is a low. I feel hopeful; overall I may feel healthier than a year ago. I’m more debilitated now, but less ILL. More chronic, less flailing, flaring, uncontrollable. A year ago, I was freezing all the time during the day and drenched in night sweats whenever I slept. I was in constant pain and felt fluish every day. I was still going to the dog park and grocery shopping, but I was scared and overwhelmed. Maybe most of the improvements have been mental– now, when the viral symptoms descend, I don’t panic. I understand that this could be lifelong and any progress will always be at a snail’s pace. I understand there may not be progress at all, it may only get worse. I know now there will be spans of no pain and I just need to take one day at a time. In fact, every single night when I go to bed, I am excited at the prospect of another chance in the morning– at the knowledge that a new day may bring a better day.

My husband says, it was a long road down, so it’ll probably be at least as long back up. I try to relax into the ride, do all I can to unburden my organs and facilitate healing. When my inner workaholic and constant student starts to writhe inside this straight jacket, I soothe her: You are working. You are writing, reading, learning about yourself and opening your eyes to suffering.¬†I remind myself that I don’t have to talk to people that annoy me, drive during rush hour, meet deadlines or bow to bosses.¬†When my night owl howls, I tell it nothing fun happens between 9pm and 2am. You’re not missing anything, go to sleep.¬†I try to believe it. I remind myself that I never have to hear an alarm clock. I ease into bed with a solid routine and, when I wake, I lounge for hours. This is healthy, don’t resent it. When cabin fever and loneliness threaten to make my mind come apart at the seams, I pretend I am monastic. I am on a retreat. I am cleansing, enjoying solace. This is a temporary stillness. It is needed. Revel in it. I get to enjoy the garden and the sun. I get to spend every day with my dogs, even if it is lying flat on my back. I promise myself: The world will be there when your body is able to meet it again.

Maybe this low is where the slide stops and it’s all uphill from here. Listen carefully:¬†“Believe in miracle and cures and healing wells.”

So hope for a great sea-change
On the far side of revenge.
Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there’s fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.

Seamus Heaney,
The Cure at Troy
R.I.P.

Heart Center.

I have an appointment with my GP tomorrow. It’s at 9:30am, which is about 2 hours earlier than I usually schedule appointments so that I am a functioning human being. I don’t even know if it’s worth it to see her. I basically made the appointment because I haven’t seen her in 6.5 months. I am a different person now. Last time I saw her, I still¬†didn’t quite understand how the medical system works. I still sort of thought that doctors would search and help and communicate and dig until they figured out what was wrong with a patient. I still didn’t realise how specialists operate. Even after the first infectious disease doctor said, “You don’t have an active infection” and then, in no uncertain terms, gave me a permanent goodbye. Even after the second infectious disease doctor said, “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms.” In other words,¬†See ya! Even when the chronic fatigue expert spent ten minutes with me after I waited 8 months for an appointment and sent me on my way with directions to exercise read a book about pain, and try Cymbalta. It wasn’t until my second visit to the rheumatologist, that it finally clicked. He had treated me so well at my first appointment. I will never forget he said, “There is something wrong with you. It is not your job to figure it out, it’s ours.” It felt validating and I almost wept. Someone would finally take the burden of this search off my shoulders and figure out why I felt like I’m dying… But that’s not the way it works. When I went to see him again a year later, the first thing he said was, ‚ÄúWhy are you here? Chronic fatigue syndrome is an infectious disease.‚Ä̬†Ah. Click. Finally I see. Dr. House is only on a tv show, stupid! Specialists spend 15 minutes max listening to your story, run the standard tests, and you’re done. If the tests are negative, you will never hear from them again. And, even if the tests are positive ~ like the time they found two toxic goiters on my thyroid and had to kill the whole lot with radioiodine and I had to figure out from a pamphlet and a bunch of inquiries that were shuffled from one person to another¬†how to get my synthetic hormones and whether I should have follow-up visits with someone ~ sometimes you won’t hear from them then, either.

I had a yearly check-up with my GP 9 days before I was hit by ME. I distinctly remember saying to her that day, “My biggest problem is my neck” ~ meaning the degenerative disc problems in my cervical spine that have plagued me since my early 30s. We talked a lot about my job. I was having difficulty sitting at a desk all day after years of being on my feet. She thought, because of the stress involved, that it might not be the job for me. I remember her saying exactly that: “Are you sure this is the right job for you?” I shrugged and thought, Maybe not. But I still love it. In some ways, I think that sentiment has coloured the treatment I received once I came down with ME. I think a lot of us (my doctor, my boss, my family, and I) thought my problem was caused by job-related stress and lack of sleep.

That is another way I am a different person now than when I saw her 6+ months ago. Now, my awareness of my body and physical sensations are extremely fine-tuned. It is laughable to me (and tragically sad) that, in my confusion during that first year, I was almost persuaded that my sickness could have been caused by 1) bowel problems, 2) vasovagal reactions, 3) stress and anxiety, 4) my pain killers, 5) my birth control pills. When you are scared and in foreign territory, you want to latch on to ANY explanation that is said in a rational way from an expert authority. I suddenly understand how false confessions are coerced out of murder suspects. Maybe you’re right, Dr. E, maybe it’s just IBS. Phew!¬†Even though I had had my share of health problems in my life, I was completely naive about how this medical journey would unfold itself. It is tragically sad and not so laughable that I didn’t trust myself 100%. I was SO SICK. My bowels? Stress? No, not this. Sleeping normally, then swimming in sweat. Running a little cold, then incapacitated by bone-wracking chills. Steady, then dizzy. Confident, then fearful. Strong, then shaky, then weak. Memory like a steel trap, then uncertainty about all details. Aches in my neck, then deep body-wide pain. Occasional headache, then 24-hours-a-day migraine for months. Able to bound up and down stairs, then legs not working. Energy, then none. Working, then housebound. Well… then sick. Don’t doubt yourselves, ever.

So, why am I even going back to my GP? I want to talk about my application for disability. She has known me for years and she should know that, even though I mostly saw her when I had chest infections, I have always been an upbeat, energetic person and ME caused an abrupt and permanent change. I must stay unemotional. The day last year that a few tears dropped in her office sealed my fate as someone that needed therapy and an antidepressant. My chart note says “Stress reaction, emotional.” I did what she said and started seeing a therapist, but 15 months of weekly visits later and nothing has changed. Nothing except I’ve spent 50 minutes each week crying about how I don’t know how to accept this new life and I don’t know how to stay hopeful and calm when my symptoms flare. Which is always.

I’ve cried more in the last year than I have in the 39 years before. I get overwhelmed sometimes with the surety that my husband will reach a breaking point and leave me. Or that I will somehow have to find the strength to leave him so he can have a life and I can be freed from the unrelenting guilt that I carry. The other night, my husband said, “I’m not going anywhere. I love you deeply.” I sobbed: “But you didn’t fall in love with this.” I spat out the word “this”. I said it with a grimace of distaste, as if I were talking about a maggot-infested, rabid rat that was sitting on my chest. And I actually flinched at the knowledge that the revulsion was about myself. I try to stop my brain from doing this. I try to remind myself that I still have value, even sick. But it’s hard now that I have very little interaction with the outside world. I can tell myself a thousand times that I am not the disease and my self¬†is not sick ~ my core is still the same ~ but I don’t really believe it. I sure feel sick at the core. Or, at least, that there are many, many layers of sick surrounding that central self, which is still the me I know and love. But, if those layers rule the body, who really cares what’s in the center? If it can’t express itself or figure out a way to thrive, what’s the point? How do I enrich the world when I rarely laugh, can’t talk for more than an hour each day, have nothing interesting to say…? And how oh how do I find joy in my own life when everything I enjoy takes energy that I simply don’t have? I have to find joyful activities that can be done lying down with my eyes closed, day after day?

Anyway, my husband pointed to my heart and said, “I fell in love with what’s in there and that hasn’t changed.”

I thought, Yeah, it has. But, I admit, I felt another renewed resolve to fight. If not for myself, then for my husband and the person with whom he fell in love.

sarah and dave 5

all the logic and language and loss

I was hoping to start feeling better again before I wrote anything, but this downturn is lasting longer than I thought it would. It’s not horrific. I’m not confined to the bed or couch, but, I’m not walking in the garden or doing my stretches ~ my two forms of activity. I’m basically just shuffling around the house, very Tin Man. Easter was the beginning of the slump, with symptoms aggravated by a teeth cleaning last week. I had been putting it off for a few months, thinking it was not a smart expenditure of energy, but, when I was having my good week, I made an appointment.

I looked online beforehand, but I couldn’t find any firsthand accounts of the ramifications of teeth cleanings on people with ME. Unfortunately, I can’t really give an accurate account because I compounded the effects by ~ I know, I’m an idiot¬†~ driving myself downtown to the appointment and chatting way too much to the hygienist¬†because I wanted to fill her in on my situation (I’ve been going to the same dental clinic for over a decade).

I thought the drive would be straightforward and I didn’t want to ask my husband to take the day off work. Big mistake. Again. The problems started while I was walking from the elevators to the dental office. My heart rate was over 120 bpm and I had to stop walking repeatedly. This was a short hallway and I felt¬†ridiculous¬†stopping every two steps to wait for my heart to calm down. I wasn’t nervous about the appointment, so I think it was because I was carrying my purse… That’s my theory. The cleaning itself was fine. I asked her to be very gentle and skip the floss. The worst part was coming back upright after being tipped fully head-down in the chair for so long. But I recovered quickly from the momentary vertigo and went home.

That night I was curled in a ball on the kitchen floor, crying, feeling like I was dying, dogs swarming around me, wondering what was wrong. I told my husband, “Never let me drive downtown again, no matter how strong I say I’m feeling.” I tried to figure out the reason: Was it because I drove too far again? Or because my heart was running full steam? Or because I talked too much? Or the after-effects of the position I was in ~ akin to a tilt-table test? Or the actual cleaning ~ the release of bacteria, the micro-abrasions? I’m always trying to tease apart cause and effect, but there are too many confounding variables and logic doesn’t lend itself to this disease. Logically, with more rest and more sleep, with a better diet and fewer toxins, with less stress and more mindful awareness,¬†I should be feeling better than I ever have. But my temperance is obviously outweighed by the marauding lifestyle of my viral invaders and the intemperate rage of my immune system.

Happily, my hygienist said she thought it would be fine to push my next cleaning out a year since I am taking such good care of my teeth. There is nothing like a chronic illness to get you to floss every day and never go without your mouth guard ~ I don’t want any¬†preventable problems complicating my current situation.

I didn’t feel as bad the next day, but then my period came. This is now my fourth almost-painless period since coming off the pill in December and, believe you me, I am rejoicing every minute of fearless, crampless menstruation. I spent SO many years dreading the monthly… planning my life around it… so, this positive change in my body does not go unnoticed. However, the ME/CFS symptoms definitely flare up each month ~ the usual uterine pain has just walked around to my lower back. And my coccyx: the absolute southern-most point of my spine is killing¬†me. That baffles me.

Since getting my period, I have had a headache. I haven’t had a headache in so long ~ especially one that goes to sleep with me and is still there when I wake. I’m not happy with this bedfellow ~ I was hoping, since the husband and dogs have been relegated to different beds, I would only be sleeping with the dust mites that could survive my weekly washing ~ so, again, I’m trying to analyse the cause: Is the headache from my period? The new Seriphos supplement? The new licorice tea? Pollen allergies? Neck tension? Bad sleep? But, all other symptoms have increased, too: I’ve had more of the usual inflamed, painful, stiff muscles. The hot/cold issues. Feeling like I’m coming down with something… sore throat … you all know the deal. And I had two nights of slight night sweats. This struck the fear of god into me. Besides the muscle issues and heavy dragging exhaustion, these are symptoms that had left me. Yesterday, I started begging aloud: Please don’t let it come back, PLEASEPLEASEPLEASE...

For a few months I have been watching the texture of my skin change. It’s bumpy ~ different than anything I’ve experienced in 40 years. I was convinced it was my extremely high-fat diet, so I ignored it. Who cares? I have bigger fish to fry. But it’s getting steadily more alarming and during these last few weeks of hormonal fluctuations, it has bloomed into an acne-braille mash-up that, when coupled with the lack of muscle tone, weight gain, sleep-deprived eyes, thin hair showing a year’s worth of grown out roots (with so much grey!), has me recoiling from mirrors. I told my doctor that I felt like that scene in The Exorcist where the skin on the girl’s stomach spells out “help me“. It was like the needle slid across the record… The Good Doctor and her trainee internist looked at me with heads cocked and eyebrows furrowed and I could hear the clock’s second hand ticking around… “Oh, nevermind,” I said. “I just mean my body is trying to tell me something.” My point was, there has to be a logical explanation. My body is pushing ¬†from the inside out¬†into every pore and I should be able to read its message. I should, after all these years, know its language.

So creepy... So sorry.

So creepy… So sorry.

A few happy notes to help get that image out of your head: our Cherry Blossom tree is in full bloom, raining salubrious pink petals all over the garden. My sleep is ever so slightly¬†better. I’m starting Chinese herbs next week and will probably add back legumes to my diet after that. I managed to organise all of our finances for tax time. My husband’s sleep apnea is nothing to worry about.¬†A bird just hopped by my window with a tuft of what was obviously my dog’s golden hair held in its beak and I’m thrilled to think, after how much he has terrorised them, that his fur will do a little community service in a nest somewhere.¬†My friend Z. and her beautiful baby girl came to visit yesterday. My family is healthy. And Game of Thrones has started.

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