My Career in Healthcare.

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My view this morning… and all too often.

Recently, I was imploring my husband to find opportunities for couple-time in his schedule, get me out of the house so we could do “fun” things, spend time as a family… I wanted to drive around and look at the extravagant Christmas house lights over the holidays or see the Christmas ships; I wanted to visit Snoqualmie Falls, especially while it was raining so hard and the water would be high and dramatic; I wanted to drive north to look at flocks of snow geese; Seattle Symphony–anything! These things never happen and my husband said, “But every week your energy is maxed out with doctor appointments.” This is true, but this is calculated behaviour so I don’t go stir-crazy or get depressed. I can manage about 3 things a week and I’ve been scheduling about that many appointments every week for years. Hydrotherapy, strain-counterstrain, myofacial release, pelvic floor PT, acupunture, mental therapy, dietician, as well as specialist appointments, follow-up doctor visits, blood draws and testing. When I don’t have something scheduled, my attitude goes down very quickly. I think I might quite literally go insane if I shuffle around the house in baggy pjs for too long, alone, talking to the dogs, cooking meals for one, keeping myself occupied with paperwork, illness research, watching tv– especially in the winter when I can’t at least shuffle into the garden.

I tried to take a week off once and I caved by Thursday and made a massage appointment for the next day. I was crawling the walls, feeling ineffectual, lonely, angry. I wonder how anyone without a spouse or support system survives, or patients who are completely housebound or bedbound or neglected in institutions (not to mention much more horrific situations of war, solitary confinement, POWs…). It’s the isolation more than the confined physical space, I guess. My appointments give me “somewhere to hang my hat” as my grandfather used to say — a reason to get dressed, a place to go and have a conversation. My “rehab specialist” asked me if therapy was helping and I said, “I get dressed and I get to talk to someone.” He’s obviously done a lot more than that for me (for example, helped me find the best doctors and get disability), but my point was clear. Shared experiences are much more important than I realised. Like the outcast monkey that would just hang out on the edges of the enemy monkey territory even though he could be torn to shreds at any moment because the drive for company and community is that strong (I saw it on NatGeo, it made me weep).

My physical therapist and I talk about books, movies, music, tv shows, politics and I get to lie supine and motionless while he gently fixes my pain. How could I give that up? But I would–to do things with my husband. So, that’s what I told him–my husband–and he seemed confused, asked: “You can just stop those appointments? You don’t need them?” It never occurred to me that he didn’t know I scheduled these things to save my sanity, to save me from offing myself. Isn’t that obvious? Of course I don’t need to go to them! I wouldn’t cancel my immunoglobulin infusions, but all other commitments would be trumped by the importance of quality time with people I love. Husband and dogs first, friends next (actually, friend, since only one visits. Love you, Z!), healthcare visits last. That’s how I schedule my weeks. If I think there might be the weather to go to the cemetery with my boys on a day that my husband can do it, I will cancel everything else. I’ve exhausted the search for The Doctor Who Will Fix Me. I’m happy with my GP, endo and body people. I’ve seen the best neurologists. I don’t really think I would benefit from an immunologist, allergist or rheumotolgist. Maybe one day in the future I will see an ME/CFS specialist, but, for now, I’m going to focus on other things. So, my goal for this year is to encourage my husband to work a little less and redirect some of our energy into more joyous experiences. I can’t be very spontaneous, but I can schedule an “appointment” to drive out of town or an hour in a coffee shop or even play a game at home.

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I can’t even.

I’m in a bad headspace. Feeling overwhelmed and hopeless, like I just need to give up. I know what sparked it. I got a bunch of blood tests done — things I haven’t had tested in 1 to 3 years — and they’re all still a mess. I’m still a mess. I haven’t made any headway in years. I just feel defeated. There are so many things my body is fighting and either I’m not helping or nothing I do helps. But mainly I feel useless and inept because I can’t manage to research something thoroughly, plan an attack and implement it. I can’t commit to anything because I have no faith that anything will work. So many pills. So much money. So much effort. So much information to process. So many competing theories. So much time scrambling in one place, getting nowhere. I do nothing but read how to help myself — hours everyday for years — and I just wind up feeling like I’m drowning more and more because there is too much.

I can’t seem to manage a methylation protocol, or a detox protocol, or brain retraining like everyone else can. Or a liver cleanse or lymph drainage or help my leaky gut or what about parasites? I can’t seem to manage any diet changes: watch out for histamine, salicylates, oxalates, sulphur, tyramine, too much/too little protein, too much/too little fiber, too many carbs, not the right kinds of fat, dairy, sugar, mycotoxins, pesticides, chlorine/lead/chloramine in water, your tupperware is plastic, your pots and pans are killing you… it never bloody ends! And why does everyone do so well with physical therapy, acupuncture, myofacial release, Bowenwork, craniosacral, reiki, feckin Feldenkrais and nothing seems to work for me? I’m thinking about NAET and muscle testing, frequency machines, homeopathy and EMF sensitivity because what if?? But I know they’re all just black holes. Everyone has a magic pill or a serious warning: Don’t sleep on foam! Don’t go in a hot tub! Your milk must be raw! Your dogs are killing you! Don’t stretch if you have EDS, don’t spend too much time lying down if you have dysautonomia, enemas are wiping out your good bacteria, you probably have Lyme–go on antibiotics, the longer you wait, the worse it is! You definitely have mold because you live in Seattle–leave your house and possessions behind and get clear! I’m so over all of it. There’s no point in giving me advice to just tackle one thing at a time because I can’t. It doesn’t work that way. Time is slipping by; I’m getting older just sitting in one spot. Everything is connected and as soon as I decide to do one thing, I read how that can tip another thing out of balance and I freeze… and wind up doing nothing. My brain does not work like it used to. This is most frustrating of all.

Imagine you’re suspended halfway up a cliff face, trying to get to the top. You’ve spent months researching the best path to take and you have some energy, you’re ready. As you start to climb, people abseil past you, screaming, “Don’t go that way! There are perils up ahead!”
Then others beside you say, “Nah, this is definitely the best way, they don’t know what they’re talking about.”
Then other people all around start chiming in and you listen–while clinging on to the crumbling rock for dear life–because so many have made this climb before you: “If you want to get to the top, go left.” So, you start researching that path.
“No, go right.” Better check out that option.
“It doesn’t matter which way you go if you don’t eat this meal first.” Oh shit, glad I didn’t start climbing yet.
“No, doesn’t matter what you eat or where you climb, you’re fucked if you’re not wearing the right gear.” Energy is draining out of you and the fear is creeping in.
“Don’t be silly, you just need to spend all day every day telling yourself you can get to the top and you will.”
“Nope, actually this mountain is insurmountable when you’re as weak as you are. Just hold on as long as you can and hope that you get stronger before your grip gives out.”
And… I literally can’t even.

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Anyway, I pretty much want to burn every book I own, cancel all my appointments, throw out all the supplements and extricate myself from every group and forum, go to bed and give up… and, if I’m truthful, it’s all sugar’s fault. I have a grade A, deep-seated, fully-in-denial addiction and my candida blood test came back twice as high as the high result from a year ago that I ignored. Or at least candida IgM did and that’s the antibody that shows active/acute infection, right? I don’t want to go on another elimination diet. I don’t want to deal with something that will apparently keep rearing its fungal head forevermore every time I eat some ice cream. I don’t want to take prescriptions for months and deal with die-off and herxing for weeks. I just don’t. Even my husband is clanging a warning bell about candida, gently encouraging me to just try to quit eating sugar temporarily and I’m like a petulant child. I hardly eat any compared to the old days! I’ve given up so much! And then I ate a bag of kettle corn while pouting. This is waaaaaaayyy harder than booze and cigarettes. Way harder than gluten, dairy, nuts or anything I’ve tried before.

So there’s that. And then there’s these:
Cholesterol and LDL are higher than they were 8 months ago.
CMV IgG, which has been negative 4 times in the past, is now high out of range.
HHV6 IgG is still high out of range.
Mycoplasma Pneumoniae IgG is higher than it was (out of range).
EBV IgG is much higher than it was (out of range).
Sex Horm Binding Glob and Estradiol are high, whatever that means.
Total IgA and one IgG subclass are low.
VItamin D and Vitamin B12 are both low.

I’ll be talking to my doctor about all this in a fortnight, stay tuned.

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 “30 Things About My Illness” 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’s 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. 🙂

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.

A Day In The Life

My yesterday:

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

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

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

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

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

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

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

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

Title Credit.

Doctor, Doctor, Gimme the News

I couldn’t decide whether to use this Robert Palmer song for my title or the equally cheesy and almost as ancient Thompson Twins song: Doctor, Doctor, can’t you see I’m burning, burning… Have to say, I like the latter better, but I don’t currently have a fever, so it didn’t win out. 🙂

I wrote this post yesterday before I launched into the exciting day of driving myself to appointments. It’s kind of unfinished, but I’ll publish it anyway and get on with resting up…

I got the results from the saliva and stool sample tests that I sent off almost a month ago. I don’t have the hard copy results in front of me yet, but the doctor called me yesterday and I took furious notes. Here’s the wrap up:

  • IgA antibody tests for milk and eggs were negative and gluten was 4 (he said they consider below 6 negative). These results could be because I am not sensitive or they could be because I am sensitive, but I haven’t eaten any of these foods in 7 months (almost a year for gluten) ~ and I’ve been very strict with no cheating. Soy came up as “equivocal”, meaning not negative but not a strong enough reaction to be positive. He suggested I stop eating soy to give my gut the maximum opportunity to heal in case it is causing inflammation or reactions. I don’t eat soy a lot, but the things I do eat with soy, I really don’t want to give up: namely, Vegenaise (I can’t have the eggs in regular mayo) and soy creamer in my tea (I’ve tried all other options ~ soy creamer is the best mimicker of milk in my black Irish tea). He said I have to watch out for soy lecithin, which is in a lot of processed food. My Earth Balance fake butter has soybean oil and soy lecithin in it, so he said I could probably use butter since people with dairy sensitivities usually do fine with butter (just to be clear: I don’t know if I have ANY sensitivities to foods, I am just doing this diet to help my gut heal, decrease systemic inflammation and increase good bacteria).
  • DHEA was 6 with a range of 3-10. He said that indicates that I am no longer in severe adrenal fatigue.
  • 17-hydroxyprogesterone was 22 with a range of 22-100. He said this indicates that I am in a high cortisol output state, but, because my DHEA isn’t extremely low, he thinks my adrenals still look okay.
  • H. pylori was low = negative.
  • When my stool was cultured for yeast, it was negative.
  • Estrodial was 8 with a range or 2-10.
  • Progesterone was 45 with a range of 20-100.
  • Chymotrypsin (a digestive enzyme component of pancreatic juice) was 12 with the range being >9. The doctor interpreted this as showing my digestive enzymes were okay and my pancreas is working.
  • No signs of parasites or infectious disease-causing bacteria like Campylobacter, Shigella, Salmonella, E. coli etc.
  • Levels of two enzymes (lysozyme and alpha-lactalbumin, I think?) that the gut produces when it’s irritated were low = good.
  • My bacterial balance still indicates gut dysbiosis, unfortunately (which, by itself can lead to immune dysregulation and both can lead to mitochondrial dysfunction). I am still low in friendly gram-positive bacteria and too high in gram-negative bacteria. He said I am doing everything right (bowel help, elimination diet and probiotics), so he is not sure why this is not getting better. But, he said keep doing what I’m doing.
  • The other significant result was the salivary cortisol test:
    • Morning = 16 Range 13-24
    • Noon = 10 Range 5-10
    • 4pm = 8 Range 3-8
    • 12am = 7 Range 1-4
      • Apparently, my pituitary is turned on all the time and my cortisol is not going down enough at night, which is probably why I am not sleeping well. He suggested taking phosphorylated serine (a supplement called Seriphos made by Interplexus), starting with half a capsule an hour before bed. He said this is an amino acid that will help turn down the cortisol.
  • Lastly, he said I should avoid genetically modified foods by trying to choose organic fruit and veg as often as possible. I kind of scoffed at avoiding GMOs, mostly because I didn’t want to think about ANOTHER thing to avoid, but he gave me a speech about what scary gene manipulations are being done and how many studies are suppressed by big money (ie: Monsanto), so… okay, I’ll take it more seriously. [There is such a ton of shocking information out there, that this subject needs a separate post all to itself.]

THEN I had an appointment with my new sleep doctor. I love him, thank god. Once again, I spent a few days this week weeping from the burden of this disease. Lack of sleep not only increases all the symptoms of ME/CFS, but it also causes the usual black fuzzy cloud of irritation that healthy people experience when they don’t sleep. My friend Z., who has a new baby, reminded me of this. Even healthy people are exhausted and overwhelmed when they are woken up throughout the night, night after night, so I’m cutting myself some slack. Having said that, after having quite bad diarrhea from the Valerian supplement I started last week (my body is SO tolerant), I was finally ready to consider a prescription sleep drug. Especially after reading this post over on Learning to Live with CFS.

Dr. M, my new sleep doc, gave me a few new options for sleep and then pointed out, “Note that I am not reaching for my prescription pad. We can go there, but not yet.” Low dose anti-depressants may be the answer, but I love doctors that try everything else first. It makes me feel listened to ~ respected. First he said, for very light sleepers, CPAPs can replace the waking problem of apnea with the waking problem of a foreign object attached to your face. Well, no shit! Finally someone who doesn’t say, you just have to work at getting used to the mask and it may take months.

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Just get used to it!

He told me to add another mg of melatonin about 3 hours before bed and keep taking the 1mg right before I go to sleep. He recommended getting a custom-made pair of earplugs from a hearing aid store. They will cost about $100, but he said they will be a very good ~ and comfortable ~ investment. I should try going to bed a little later ~ he thought that I may wake up 5 times rather than 15 times if I went to bed closer to what I thought my natural sleep time would be (I told him, in a perfect world, I think my sleep schedule would probably be around 12am-8am). He warned that it sounded crazy, but putting a gel ice pack under my neck and head when going to sleep can help and, even better, take a bath 3 hours before bed and then do the “cool head” routine to really exaggerate the effect. He recommended I read Too Loud, Too Bright, Too Fast, Too Tight, more than anything to get some solace in the fact that I’m not alone. Finally, he thought we should try a dental appliance to replace the cpap since my apnea is mild (although, he did confirm that I have a physical apnea problem ~ not just heightened brain activity. He thought the throat narrowing is probably a congenital disorder that has affected my sleep all my life). This is not my dentist, but the page gives example images of dental appliances, if you’re interested.

Aside to my Dad: I KNOW, you told me so. But I wanted to give the cpap a fighting chance. Plus, I really liked breathing filtered air all night instead of dust mites and dog dander. Plus, I invested a lot of time and money getting to know the cpap life. Dr. M. warned that it won’t be a quick and easy transition to a dental appliance. The dental device takes time to make and, once I’m using it, it will take a few visits and a lot of tinkering to get it fit perfectly. He said it will shift my teeth a minuscule amount and cause some jaw discomfort, but it can ultimately help TMJ disorders, as well as apnea.

More later when I’m up to it. The snow from my last post is gone already ~ just in the time it took to edit this, maybe half an hour. So, new gratitude:

TO THOSE FRIENDS THAT HAVE NOT LET MY ABSENCE FROM LIFE SCARE THEM AWAY: THANK YOU FOR BEING THERE. There are no words to describe how much I have needed you and how you have buoyed each day and given me the strength to keep fighting this. Isolation is a killer and feeling like you’re not interesting/funny/able to contribute/able to participate can start to make you feel a bit worthless. If I’m not brimming with energy, quick-witted and able to talk about life’s new adventures, would I want to know me? So, you know who you are: I don’t take you for granted for even a single second. [Again, this subject needs a separate post all to itself.]

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… love … love … love … love …

Fish or Get Out of the Boat

I’m not up for writing, honestly, but I want to track a few things from the last few weeks. The Monday before last I had a follow up with the Good Doctor after 9 weeks. Let me just tell you, I love this doctor. I wish she were an expert in M.E., but she is the closest ally I have in this fight and I feel so confident in her hands. At least that was my feeling leaving her office. Now, looking back, I can’t remember much of what we talked about or decided. I told her I was a different person than I was the last time I saw her (New Year’s Eve). I want to remember that because I feel like hell today and I need to know that there has been progress. On New Year’s Eve I was just starting to feel better after the very low low of December. On Christmas Eve, while the men were in the kitchen, I told my sister that if things didn’t change, I couldn’t imagine going on. I was in such extreme pain and stiffness, that it was difficult to go through the motions of life, let alone find joy in the moments. As I’ve mentioned before, the muscle and back pain were horrid, but the headaches, coupled with the EXTREME noise and light sensitivity, were the main culprits. Well, cut to this last appointment with the Good Doctor and I have had over two months with hardly any headaches and much less pain, overall. What changed? I don’t know. Here are my theories:

December 1st: started Berberine
December 4th: started drinking only filtered water
December 11th: started drinking tart cherry juice concentrate every night
December 17th: stopped the birth control pill
Late December: stopped taking pain killers
January 5th: started vitamin B2 and selenium
January 6th: started cooking (once in a while) with coconut oil

I started feeling a little better on December 26th, but pain continued to lift through January. Sleep was better, too. I have been putting my faith in the tart cherry juice, but, honestly, I think it has more to do with eliminating the pill and pain killers.

Unfortunately, my sleep started to go downhill again and continues to decline. I fall asleep without any problem, I stay in bed 10 to 12 hours, sometimes I don’t remember waking up at all (although, most nights I remember 12 to 15 awakenings), but I hardly ever have proper, calm sleep cycles. I I feel like I am going insane. I was so thrilled the last few weeks that, although my nights were tortured, my days were staying okay. Until this past weekend. Today, I am so tired. I ache all over. I am back to moving like the Tin Man. I don’t recognise myself in the mirror. I think, for the first time in my life, I look older than I am.

The Good Doc’s plan for me is to try valerian for sleep and then move on to Chinese herbs and/or an antidepressant. She is the only doctor I’ve ever seen that uses psychotropic drugs as a last resort. She said, “Cymbalta is great for depression, but you’re not depressed.” I’m not. I’m not sad or hopeless. My mood is actually pretty good (as long as the bad pain stays away). She said, “It can help with sleep, but can cause insomnia, too, and it has a host of side effects that might set you back. So, let’s eliminate all other options first.” Love.

She also said I can try adding legumes back into my diet. I’m going to wait until after my period to eliminate any confounding variables caused from PMS… but, I might not even add them back at all. I have been on this diet for so long, I feel like I should keep it consistent while I try the Chinese herbs and sleep drug.

That Monday I also saw the sleep clinic tech to get a new cpap mask. It’s the most impressively designed mask that I’ve come across yet (Respironics Wisp), but it makes no difference, I’m still awake hundreds of times each night (literally hundreds ~ the sleep study showed I was waking up 48 times an hour). Last Friday, I went to see the rheumatologist I saw a year ago (literally ~ the doc pointed out I was there on the same date in 2012). The first thing he said was, “Why are you here? Chronic fatigue syndrome is an infectious disease.” My brain was so fried, I honestly couldn’t come up with any reason why I was there. I couldn’t for the life of me think what a rheumatologist does. I had gone to acupuncture beforehand and the Master had done a session that was meant to make me very tired so I could sleep well that night. It didn’t help me sleep that night, but it certainly caused me to be half-comatose in the hours after the appointment ~ I was slurring my words driving from acupuncture to the hospital and, after melting for an hour in the waiting room, I was far from the articulate, cogent, well-informed patient I pride myself on being… And the rheumy was a fast talker ~ a New York native, I think, based on the accent ~ and I was the last appointment of the week, so all-in-all, it wasn’t going the way I had planned. I think I said something like, “I’m not sleeping and I think it’s the fibromyalgia-type constant awakenings and I wanted to talk to someone who knew something about this.” He told me about the sleep study that Dr. Moldofsky conducted many years ago (I’ve now heard about this study from every single doctor I’ve talked with about sleep. It must be on every medical school exam) and then he said, “Try amitriptyline. You have to try something. I have patients that would rather limp in pain their whole lives than have knee or hip surgery. That’s fine, but you narrow the horizons of your life.” I know that is exactly how I would be: limping is a certainty; surgery is an unknown and full of risks. The doctor said, “As my father used to say, [for days I’ve been trying to remember the adage he used: fish or get out of the boat, catch something or reel it in, cast or go ashore… something like this].” I replied, “My Dad would probably say, shit or get off the pot.” And that was the end of our appointment.

So, the week’s round-up: After three nights, valerian is making no difference and I’m seriously considering turning to amitriptyline or cymbalta. My period is four days late. My skin is like braille. I’m swollen, tired and achy. BUT, for a few weeks there, I thought I was definitely making progress and that has given me much renewed hope for the future. I can do this. I shall overcome. Plus, every day without a headache is a good day. Pure gratitude!

First colour in the garden. Spring fever. :)

First colour in the garden. Spring fever. 🙂

…it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled…

What a roller coaster it has been. One day I want to write about one thing, the next day, everything has changed and I want to write a whole different post… So, I wind up writing nothing at all.

I spent three days feeling good. And I mean good. Stiffness was drastically reduced, my back pain was virtually eliminated, my energy level was up and, best of all, I had no headache. For three days, I wasn’t grimacing at my husband’s footsteps or holding my ears while we watched tv. It was bliss, I tell you. Then, a series of unfortunate events: Sunday night, my husband turned on our yet-unused gas fireplace insert (purchased because wood fires make me dizzy and my lungs burn) and the house filled with chemically burny metal paint fumes. I didn’t think much of it ~ it’s a brand new unit, after all ~ until Monday morning when I woke up very dizzy. My husband had gone to SO MUCH trouble to get this fireplace for next to nothing ~ driving out of the city to a clearance sale, standing on the roof, repairing the chimney for days, going into the crawlspace and disappearing into the hearth to run the gas, building/grinding/soldering/I-don’t-know-whating a framework because the insert was much smaller than the opening to our fireplace… So, I was upset and emotional all day. What if the fumes from the fireplace made me dizzy? Oh no, we didn’t think of that! What if the new paint or whatever doesn’t burn off and that smell lasts for ages or the permanent off-gas causes me to get dizzy or makes my eyes burn or makes my chest tight…? Where will I go while he tries to burn off the smell? Should I get a hotel? What if this bloody fireplace causes me to be worse in the long term? The usual fretting. So, we were worried and annoyed and frustrated. Also, I think everything was exacerbated by PMS because, after months of being an emotional zen master, I felt inflamed. I was distraught and enraged. I was guilty that my husband’s fireplace project might be a complete waste. Knowing my sensitivity to scents and chemicals, I was frustrated that we hadn’t taken this into consideration. I was upset that my husband wasn’t more sympathetic to how this might worsen my symptoms (he wasn’t pleased when I asked him not to turn it on again). I was furious that this disease ruins everything. That night, knowing my period was looming and taken aback by the onslaught of my emotion, I started the birth control pill again. I thought, Whoa, PMS is HELL. I need my hormones regulated again. Then, that night, things fell apart. I woke up feeling like someone had turned on a shower over me. Sweat was running down my ribs and dripping onto the bed. I was so confused. At first I thought it was blood… Then I thought maybe my cpap machine was leaking water… I hadn’t had these sort of drenching night sweats in so many months, that I didn’t even recognise the symptom. My sheets were soaked. I got up, pulled off the sheets, changed my pillow, lay down some towels. My cpap mask and headgear were slick with sweat. I had to take it all off to dry it, wash my face. And I was shaking. And scared. Was it from the pill?? Was it from the heightened anger and emotion of the day? Was it from the tart cherry juice I started drinking? Was it from the fireplace somehow? Was it because I have been taking melatonin every night for too long? I checked my blood sugar to rule out hypoglycemia and went back into fitful sleep.

My acupuncturist encouraged me to see it as a good sign. He explained that, in Chinese medicine, as the body gets stronger, you will experience some of the earlier symptoms again. He said, I had been in the Yang Ming stage, where the pathogen was deep inside my body, but, as I try to fight it off, the pathogen is pushed into the Shao Yang ~ the “Lesser Yang”, Which is characterised by the chills and sweats. He said, “Fever means you are winning.” That made me feel better for about two hours until I developed a crushing headache, which hasn’t gone away in five days. And this headache isn’t the normal one ~ it feels more like the narcotic bounce-back headaches I get. So, I start the relentless questioning again: Is it from the acupuncture (it got much worse that night)? Is it from the birth control pill? Is it from the fireplace? Did I overexert myself? Is it from the tart cherry juice, for fuck’s sake?? The hard part is that I am convinced the headache is from the pill and, if you stupidly go online and research it, like every other drug in the world, the horror stories make you want to stop right there and then. So, here I am again… weighing the pros and cons of having a viciously painful, incapacitating period over Christmas or putting up with this headache all day, every day, which is not touched by painkillers and makes me feel as if I am carrying a very dangerous, sleeping 2,000lb crocodile on my head: constant pressure and pain, never making noise or sudden movements… Right now, not being in the throes of period cramps, I choose a period over the headache and I decide I won’t take the pill tonight (imagine what I am doing to my body jumping on and off the pill like this!). However, you know one week from now, when I am curled in a ball, weeping and ~ god forbid ~ the headache hasn’t gone away, I’ll be wanting to put myself back on birth control.

Those few days before the fumey-angry-sweaty-pill day were glorious. I thought I was coming out of the dark ages. I was sleeping better, I hadn’t put IcyHot on my back in ages, I didn’t think about a painkiller for two whole days! I’ve had the surge in energy before but I can’t remember the last time I had had some relief in stiffness and pain. Heaven.

That’s my catch-up. I am just trying to maintain my tenuous grasp on Okay, so we can have a nice Christmas with my sister and her boyfriend.

Speaking of, my sister and brother came over to visit for one day last week (my brother, a pilot, had a layover here) and it was absolutely wonderful. Even though I had tried very hard not to talk too much, gesticulate too much, laugh too much, walk around too much, still, by the end of the night, my internal tremors were vibrating from scalp to toe, my eyes were unfocused, my face was red and muscles stiff… I crawled to bed at 9:15pm and thought, “That day was worth every symptom.” I am so grateful for family, for lightness and conversation and laughter. Once in a while, it is important to put fear away and forget the careful construction of the day… and just live a little.

You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it.They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster.