Severe M.E. and Invisible Illness Video (under 12 minutes)

You may remember last year how I battled between going to see Dr. Kogelnik or Dr. Chia in California and ultimately chose the latter (and made a mistake, I think. Who knows, maybe I’ll take another trip). Dr. Kogelnik is featured in the above video and so is Whitney Dafoe, a severely ill ME/CFS patient whose father, Ron Davis, a genetics researcher at Stanford University, is looking for molecular biomarkers in this disease. Their story was featured in the Palo Alto Weekly last month (scroll to page 20).

From Forgotten Plague on Facebook:


Dr. Davis founded the Chronic Fatigue Syndrome Research Center (CFSRC) and recruited Nobel laureates James D. Watson, PhD and Mario R. Capecchi, PhD among others as collaborators on a ME/CFS research effort akin to the Human Genome Project, which he was instrumental in starting. 

More information on severe M.E., research projects and how you can help can be found here.

Not a cheery post.

I wish I had the ability to write because I have so much I don’t want to forget. I’ve taken quite a nosedive this last month and I’m feeling pretty hopeless and sad. I have many new symptoms and I’m still trying to contend with the old.

Most recently, my jaw has been injured by my apnea oral device. It feels partially dislocated in the mornings and the pain is truly excruciating– from my lower jaw all the way up to my skull above my right temple. Talking is painful, eating is painful. I’m fearful that I will cause permanent damage (or have already). This is in no way trivial. One of the only things I’ve been able to identify that helps my illness is the CPAP and oral device, when I can actually sleep while using them. I’ve tried to go back to the CPAP to give my jaw a break, but it wakes me up incessantly throughout the night and makes me feel worse than if I didn’t sleep at all. Sleep is the key to my healing. There’s nothing that will take me down quicker than lack of sleep or poor sleep and the apnea is no joke. My only option is to wear the CPAP and take a medication to knock me out. This… I don’t know, I can’t even articulate how despairing this makes me feel. I can’t tolerate any drugs. There’s not one I have tried for sleep that doesn’t either cause an allergic reaction or make me feel much worse. Having to deal with the CPAP–the washing every day, the tight strap around my already-injured neck, the rash and acne on my face, the blowing my gut up with air, the endless awakenings–I am so upset about having to go back to this. Plus, trialling sleep meds when my sleep had gotten better! I don’t want to be on more prescriptions and I can’t afford to be. So, because of my jaw, a cascade of pain, energy-depletion and lack of sleep. And I think I might have to see a new doctor about my TMJ, which I need like I need a hole in my head. Or a new jaw injury.

My gut problems have gotten worse, if that was possible. I’m permanently inflamed and don’t digest well, even with HCL and enzymes. I now have to do an enema daily or every other day. Another thing for which I have to find time and energy. And the more downhill I go, the more I fear a day in the future when my husband has to help with this. Don’t even read that. It’s too gross and unbearable to think about. The only plus side of this situation is I’m very thankful for the detox help that enemas provide. Much better than being constipated.

Sleep, pain, headaches and exhaustion have been worse this last month. I’ve had no appetite, but have actually gained weight. The muscle pain and stiffness more than anything upsets me. I can’t go back to the pain I had in 2012; it was all-encompassing. It stops me from moving as much, talking as much or being in any way a pleasant person to be around. I can really topple quickly.

I started seeing a pelvic floor physical therapist who helped me more in the first appointment than the fancy GI specialist did with two appointments and two invasive tests. Of course, I’m only allowed twenty-five PT/OT/MT visits per year and I’ve already used twenty-two. And with Medicare, I’ll have zero. The thought of being without my strain-counterstrain PT is very disheartening. I haven’t seen him in a month and I know this is contributing to my worsening pain. He’s $150/hour without insurance.

I kind of scrapped everything I was doing with diet in order to try to fix my gut issues which started on the Autoimmune Protocol (AIP) last year, but nothing has helped. Which, of course, makes me want to consider eliminating foods all over again. Gut isn’t better and I’m going downhill, so maybe the new additions caused it? Or maybe the new probiotics. Or the Florinef. Or the emotional time I’ve had recently. Or the ups and downs of the weather. Or or or…

Almost every single day, I have an awful interaction with someone in the healthcare field. It is brutal and demoralizing. I just hung up in tears after talking to a clinic’s billing person who argued every point I made. Anger wrecks me and people just don’t want to help, so I’m reduced to weeping. I said to her, “Am I asking something out of the norm? You seem very annoyed.” They charge $150 for a half hour phone appointment, $300 for 45 minutes, so what choice do I have than to go in to see doctors and have to deal with insurance and billing?

Yesterday, I was almost in tears because my endocrinologist’s nurse was incredibly rude for the umpteenth time and for no good reason. Because I’m trying to figure out if the doctor can give me info over the phone rather than in person, because I’m trying to figure out how I’m going to get from the office to the lab for a blood draw when it is in a different building on the hospital campus, because I need to research growth hormone stimulation tests before I agree to it, because I didn’t want contrast with my MRI and they made a mistake and put the wrong order in…. These people are in charge of my care, I need them, but they battle every question. Endless phone calls about two things: money and protecting myself.

Well, this has been a cheery post. I kind of hope nobody reads this rant, but I’m going to publish it anyway.

Still me

Elizabeth Milo:

My brilliant friend Jak (returning the compliment ;)) wrote this blog post inspired by something I wrote on Facebook and I had to share because she says it so perfectly. “I like to shout and dance and rage,” too, Jak. Here’s to grabbing life with both hands and taking a big ol’ bite every single day. X

Originally posted on Mast Cells & Collagen Behaving Badly:

My brilliant friend Elizabeth Milo has prompted this blog post by something she wrote on her Facebook page and I have her permission to reprint it here.

“My whole life I exploded in one way or another. Exuberant excitement, blazing opinions, howling heartache, effusive laughter, explosive temper. I was told to relax, calm down, mellow out. I was jealous of my quiet, even-keeled friends. They weren’t open books, they held some power by holding back.

Then I got sick. And all of that which made me too much for some people is now too much for me. I’ve been straitjacketed into temperance, placidity and passivity by an illness that has not only taken away walking, working, whirling, but has also taken away my *expressions* of emotions and passion for life. They’re all still there, just tamped down and muted out of necessity.

There’s nothing I wouldn’t give to be too…

View original 614 more words

Addendum to My Update

My friend Karen commented on my last post that I was having a rough go of it and it got me thinking that I might be doing better than I expressed. I probably downplay the improvements partly out of superstition, but also because the hourly changes in this disease make any quantification of trends virtually impossible. And, even more than that, it’s the Can I Get A Witness? thing — that obsessive need I have to not sugar-coat… to make sure reality is patently clear… to lay bare the horrors and try to put them in perspective, held in relief against what life used to be like and, also, how much worse it could be. People are so excited to see progress that I get lovely messages saying, “Glad to see you’re feeling better!” When you’re sick like I am, there’s this knee-jerk reaction to follow up any proclamation of “I’m doing well” with but I still have X, Y and Z going on. Or “I went to the dog park” with but that was one hour out of a week that I spent mostly in bed. God forbid anyone gets the impression that I’m not still very ill.

Believe it or not, this is progress for me. I spent so long living like a clenched fist, ashamed of what had happened to me. My sense of self was so tethered to being vibrant, independent and energetic, that the thought of being seen as sickly paralysed me with loathing. Not only did I, myself, squeeze closed in defiance against my illness, but I brought others into the ruse by vowing them to secrecy and deflecting any concern. I remember, six months after I got sick, telling our administrative assistant that I was leaving my job. “I’m sure you’ve noticed how sick I’ve been…” “No, you are?” she said and I was stunned into silence. How could she not have seen my white-knuckling it through the days? “Well, I’m leaving, but it’s only temporary, I’ll be back. If anyone asks, I’m taking a sabbatical as a bonus for all the years I’ve been here. Don’t mention illness to anyone.” It is only recently that I’ve started to relax my hold. I told an ex-boyfriend what was going on and was met with such empathy and kindness that he might as well have physically unfurled my clenched grip. He didn’t seem to be thinking, Phew, dodged a bullet there like I assumed he would. So, I started talking about it a bit more, without that roiling, acrid squirm in my belly. I mentioned it on my facebook page, and have slowly — very, very slowly — started to be ok with sick being part of my… brand (for want of a better word). So, I try to embrace my unsolicited and redundant descriptions of life as healthy steps towards self-integration.

But things are better and I’m probably handling this life better, too. I looked in the mirror the night before last and I was smiling while washing my face. I looked normal, I felt almost normal. I remembered how there was a time that my husband was washing my hair and making my meals. There were months when I lay in my room, hour after hour, bouncing between panting, wild-eyed terror and feeling like a slab of immobile meat, with barely a breath or pulse. You can have a husband downstairs or a friend a phone call away and still be totally alone, planning your permanent solution because it doesn’t matter if the problem is temporary, you can’t last one more minute. There’s only so many times you can tell someone how awful you feel. My few confidantes took on the burden of that while I folded into myself, away from friends and family.

How are you? I miss you!
I’m half dead, scared and lonely. Miss you, too.

There’s only so many times anyone can deal with that, even your closest allies. So, after a while, you stop talking about it. You decide that you better start grinning and bearing it for everyone’s sakes, including your own. But the need to express the loss never goes away — at least not yet — which, I suppose, is why I continue with this blog.

So, without the negative couching, I will say, I feel better than I did a year and a half ago. Many chronic symptoms are more sporadic and I feel hardier, able to push myself without fear. Key to all of this is human contact. I’ve let down my rigid protection and connected with some people online who don’t judge or blanch in the face of the truth, who can listen, laugh and call me out on my shit. This has truly been hard for me, but I’ve been disarmed by their candor and charmed by their openness and that has allowed me to trust. I still tread lightly and share carefully, maybe not believing I won’t have to suddenly curl quickly into a protective ball like a rolly polly, but I feel a quiet evolution inside and that has made me less bitter more optimistic happier less bitchy more at peace.

June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.




Throwback for ME Awareness

To acknowledge the last day of M.E. Awareness Month, I am reposting an excerpt from my diary from three years ago. I had only been sick for four or five months, I had no idea what was going on and felt for sure it would kill me.

Muscles pumped full of lead ~ No. Heavier. Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, ready to strain, buckle, seize up. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest. Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Chills. Bone-chills. Shivering, unable to talk, nose going to fall off, can’t breathe, feet going to fall off, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched. And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the bathroom, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think.

It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic. I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before. I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions. To live life. To not die.