Well, I’m not as strong (or as tan) as I was the last time I saw my mother and my sitting room definitely can’t compare to the view we had back then, but, regardless, it sure is sensational to see her again after 7 months. ❤
Wonderful readers….
An apology that I have been so absent in 2015 and not answering comments properly. Please know that I have read them all and appreciate every one, more than you’ll ever know. I’ve been having these episodes, which take days to recover from and I’ve also felt really busy, which always perplexes me when I used to work 50+ hours a week, but I guess it’s because I have so few productive hours now.
As usual, I schedule far too many appointments and I feel like I need to keep them all or I somehow put pressure on myself to follow every suggested lead or keep up with the things that should help me, like therapy — stay relevant to my doctors or something. From now until the end of April, I have 2 – 3 appointments scheduled every single week. It’s ludicrous, I know. I KNOW! But I have a hard time deciding what I should forego. Strain-counterstrain therapy and mental therapy every few weeks, a new sleep study and its follow-up, ACTH stimulation test and its follow up, pituitary tests, thyroid blood draw, ND follow-up, new gastrointestinal specialist, new rheumotologist/possible mast cell specialist, new neuroopthomologist, new headache specialist (a female Buddhist monk neurologist, how cool is that?), dermatologist (which I will cancel)… plus, I really want to get a massage sometime this year, I really want to get outside with the dogs when I feel stronger, I have to do taxes (shudder — this takes days), I have to challenge my health insurance rejections, I have to submit all my compounded Rxs to insurance and order copies of medical notes from the last 6 months (sooo much paperwork), I am still plugging away at my ME/MCAS emergency protocol packet, I want to hang some of the cemetery walk photos I took last year, I need to make some roasties and soups and freeze them, I need to shower, wash my CPAP, do my laundry, wash my bedclothes, order compression stockings, spices and a few supplements, get a new medic-alert bracelet, get a new driver’s license (one can dream), get a new Irish passport (one can dream bigger), PLUS I’m trying to find time to practice my brain retraining (Gupta Programme) on top of meditations, cooking, eating, requisite TV watching etc. etc…. It’s ridiculous. [Cue Bonnie Johnson commenting below, YOU’RE EXHAUSTING ME, LIZ!! ;)]
So, point being, thank you for reading, commenting, not getting responses always, understanding and supporting. Love each and every one of you. ❤ ❤ ❤
Can I get a witness?
I had a terrible reaction to an innocuous treatment yesterday. Again. Was this close to calling the paramedics, fighting to stay conscious on the bathroom floor. This one wasn’t like the tortuous 7-hour marathons of faux-malaria, this was swift, severe and very scary. It took over my body so quickly, I thought it might be anaphylaxis, but it was more than that, honestly. With the crashing blood pressure, I got instant violent shakes and chills to my bone – it came on so quickly! – and, this time, a skyrocketing heart rate. I’m used to being cold and clammy and unstable, but not in such a quick and fierce way, from totally fine to yellow/grey-paloured and ghost-like. From feeling good to feeling like I should be hospitalized in a matter of seconds.
I’ve got so much to write and no energy to write it. Every day is a calculated climb to become stable and, as soon as I gain some ground, something – food, medicine, overexertion, emotion, bad night’s sleep, GI problems, menstruation – sends me toppling down and I start the ascent all over again.
I haven’t taken vitamins or supplements since Christmas. Everything is on hold. 5 months since I left my house and went to the rentals after the bad reaction to Cromolyn and, ever since… Life, interrupted. 5 precious months in freefall. I can’t address candida or methylation or leaky gut or adrenals, I can’t take immune modulators or antivirals or sleep drugs or any of the other things I want to try because right now my only focus is: keep your bowels moving, keep your blood pressure up, keep your blood sugar stable, try to sleep.
My father is visiting and it’s like lifeforce. A reminder of where I come from and why I fight. It may feel like we’re forgotten in our four walls – no one to bear witness to the worst of it, unable to accurately describe the severity of illness and the complexity of emotions, putting on a brave face for parents, children, friends, healthcare workers, while, inside, we are screaming, moaning, constantly scanning our dysfunctional systems – but, all of us are loved and thought about by someone, somewhere. And we all have warrior sisters and brothers who understand what it is like to fear death – or, worse, painful, sick, unstable life – alone and misunderstood.
To all of you, even those I don’t know: I see you, I witness your struggle, I know the strength it takes to live the fear and then smile through it, even with something as simple as an exclamation point on a Facebook post. ❤
IOM Gives ME/CFS a New Name and Definition
Today, The Institute of Medicine proposed a new name and new diagnostic criteria for ME/CFS.
To reflect the condition’s hallmark defining symptom, “postexertional malaise” (still a ridiculous term, in my opinion, that doesn’t come close to describing what happens), the report proposes a new name be adopted: “systemic exertion intolerance disease (SEID),” defined in both adults and children by the following:
Reblogged from Occupy CFS:
IOM: Report Card
Posted on February 10, 2015 by Jennie Spotila
It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did the report stack up to my criteria for success?
Post-exertional malaise: This was my drop dead deal-breaker, and the new definition makes PEM the central feature of the disease. Dr. Clayton said that PEM was “the essence of this disorder,” and it is required for diagnosis.
Core features: As I had hoped, the new definition requires only four symptoms for diagnosis: a substantial decrease in function (work, school, social); PEM; unrefreshing sleep; and cognitive dysfunction and/or orthostatic intolerance. These core symptoms also match what Dr. Lenny Jason’s work has shown. At the press conference, Drs. Clayton, Bateman and Rowe all emphasized that this is an evidence-based definition.
Frequency/Severity: Another requirement I was hoping to see. The new definition requires symptoms “persist for at least 6 months and be present at least half the time with moderate, substantial, or severe intensity.”
Name: CFS is out, but so is ME. Citing a need to focus on the key feature of the disease, the committee proposes Systemic Exertion Intolerance Disease. Um, what? Dr. Lenny Jason told David Tuller that the patient community will not like or accept this name. I think he’s probably right about that.
Making the diagnosis: As I hoped, the report provides guidance on how to make the diagnosis, with an algorithm, short list of tests, and clinician materials to be published soon.The committee insists that any healthcare provider can make this diagnosis and start treating patients. I want to read more in the report about how they think this is possible, given the radical under diagnosis we currently face.
No psych: Dr. Clayton was emphatic at the press conference that this disease is not somatization. I’ll be reading the report carefully to see how they address the psychosocial theory.
Where To Next: This is the BIG question. Will HHS accept this name and definition? Who will submit the proposal to create a new code in ICD-10, and what category should it lodge in? Will the name CFS simply be replaced with SEID, without refining the research cohort selection?
Dr. Clayton said that this report gives advocates the “fodder” to “act up.” Will we? Can we find a way to pull together and use the good parts of this report to advance the cause? That is the question that will keep me up tonight.
More reading:
New ME/CFS Diagnostic Criteria Being Announced Tomorrow
Reblogged from Sue Jackson at Learning to Live with ME/CFS:
New ME/CFS Diagnostic Criteria Being Announced Tomorrow
Tomorrow, February 10, 2015, the IOM will release the Report on the Diagnostic
Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at 11am ET. The event will be available via live webcast at this link.
If you are unfamiliar with the IOM process, here is a summary of what they’ve been working on that I posted last year.
This should be interesting! So glad this one is in the morning and not during nap time – I should be able to tune in.
http://livewithcfs.blogspot.com/2015/02/new-mecfs-diagnostic-criteria-being.html?m=1
Rag and Bone Shop of the Heart 