I have so much to write about, so much to catch people up on and document, but the longer I go without posting, the harder it feels to break the dry spell. Each month, I think, “Write that in a blog post, you’ll want to remember that,” but I never feel like I can “waste” the time. Especially in the last 6 months. If you’re friends with me on Facebook, you know that I have lost all available energy for months to fighting horrific healthcare battles. Energy that could have been put towards conversations with loved ones, time playing with my dogs, reading or writing…
So here’s a recap: From November, 2015 to around August, 2016 I was slowly getting stronger from my immunoglobulin infusions. I estimated that they brought me up from about 15% of normal functioning to about 20%. That 33% increase was miraculous. It didn’t exactly change the way I lived my life (I still had the same symptoms, was still mostly housebound, still had to manage energy carefully), but it changed my control — things became predictable, which reduced fear and let me branch out. Payback was shorter, not as scary, I could do more and knew I wouldn’t make myself permanently worse. That last point was life-changing for me. For 4 years, it felt like anything I did made me worse, I was desperate to hold on to the functioning I had and couldn’t take many chances without being forced down a notch — and I was always so scared that the new lower notch would be forever.
So, last year we went to the Washington coast for 5 days and I didn’t feel terrible. I had two friends visit me at my house and we talked for hours and I was okay. My family came to Seattle for their annual vacation (2 brothers, sister, mother, spouses and 7 nieces and nephews) and I was able to go to their rental house 4 days in a row for extended visits. This was the turning point, though, I think. I left it all on the stage those 4 days with my family. Friends with chronic illness, you know what I mean — it’s such a difficult act to appear normal and, from what I’m told, I gave a great performance that long weekend. Each day I came home and literally crawled on all fours to my bed. I lost 3 pounds in 4 days because between each visit all I could do is lie in bed and hope for a enough recovery to try it again. There wasn’t a moment that the payback wasn’t worth the incredible time I spent with my family. I’ll have to write a whole blog post on it one day. My nieces and nephews are everything you want kids to be — sweet, kind, honest, inquisitive, funny. No bratty-ness, no meltdowns, no selfishness. My brothers are doing something right.
Right after that visit, in August of last year, I started to nosedive. I had an increase in migraines, sore throats, exhaustion, muscle pain, unstable blood pressure. I was trying out (very expensive) hyperbaric oxygen treatments at the time and thought they were either causing or exacerbating my symptoms, so I stopped those, but continued to go downhill. In November, I started the descent into health insurance hell that lasted about 4 months. I’m not going to get into it right now. There’s too much to tell and it’ll make me shake and cry angry tears as I type, which I’m not up for. Suffice it to say it is an evil, vindictive, nonsensical, black hole of a system and nobody has accurate information about anything when it comes to healthcare for people under 65 on disability. And, even if they do have the knowledge, it seems the vast majority of health-related representatives (or is it all humans? I’m guessing it is) are inept, lazy, selfish and genuinely couldn’t care less about helping someone in need. My friend Michael had one of these phone calls where he wound up saying, “How do you sleep at night?” to the representative who was outright lying to him. Essentially, that’s how I spent 4 months — all available energy every day dedicated to battling my brain symptoms so I could continue to micromanage every person who held my health in their hands, taking copious notes and making enemies, as I waded through the morass of phone transfers, misinformation, hours of stuttering hold muzak, false promises about call backs and looming deadlines… While thinking, how do they live with themselves? Not to mention incompetent, petulant doctors that I need so I can’t I leave them.
When my mother came to visit after Christmas, she said it might have been the sickest she had ever seen me. I wasn’t even close to the sickest I’ve been, but it still says something about the severity of my crash (to be fair, I had allowed myself to have one of those total meltdown, let-it-all-out, “I’m so sick of being sick” sob-fests in front of her — the kind that I usually rein in because they can make me more reactive and wipe me out — which can’t be easy for a mother to witness). My strength started to get marginally better in February. I think it might have been helped by an increase in my thyroid medication, but it was kind of a double-edged sword because I also became horribly hyperthyroid for about 3 weeks before I realised what was happening. I had also stopped going to my weekly appointments (physical therapy, myofacial, counselling etc.) and had stopped my immunoglobulin infusions because I lost insurance to cover them, so perhaps the break from obligations and weekly medications helped me gain strength.
This spring my husband, dogs and I drove to California for an appointment with Dr. Kaufman at the Open Medicine Clinic and we stayed 6 weeks for a holiday and to test how I felt in a different climate. I will write about those big events in another post. What I really came on here to document is how I’m doing now. I want to keep track of what I can manage and how bad the payback is when I indulge in social time. Last November I went out to brunch (out!) with 4 old friends (you can imagine what it meant to me to be invited). I’m pretty sure I appeared normal throughout the 2-hour meal, but payback was vicious. My calendar notes say: “very bad today, body totally shut down, in bed, shaking, crashing, crying, guts feel swollen and full of bricks, heart, muscles, eyes burning.” It lasted days. In early February, my brother was at our house for 7 hours. I spent his visit relaxed on the couch in my pjs, but we talked and laughed like normal people, animatedly, and I didn’t rest once (unheard of a few years ago). I went to bed that night flying high, so happy from our conversation, so grateful to feel fine… And then, 3 hours later, woke up in the middle of the night feeling poisoned, shaking all over. My calendar says: “severe payback, swollen throat, can barely swallow, hard to breathe, every muscle in pain, bad stiff neck and headache, shooting pain in bowels, nose stuffy and runny.” The worst of it only lasted about one and a half days.
Yesterday, we had family over for brunch to celebrate my birthday. Although the whole shindig lasted 3.5 hours, there were only about 2 hours during which everyone was here — 4 adults and a child, not that many people. My friend Z said I looked great, she was so excited by how different it was from other years. She said, “I know you’ll pay, but today was normal.” This is everything I could hope for, BUT… the big but… But, it was hard. I can power through now, I have the ability to put on an excellent performance. If my neurological symptoms stay away, I can do quite a bit physically (although standing for a long time still causes excruciating pain). So, yesterday I showered, dressed, got out plates and cutlery, made some waffles and chatted with my family. That’s about all I did before things got difficult. There’s this weird thing that happens when you’re ill, but you’re putting on the normal act: You lose time. Or at least I do. Do any of you? For example, I remember everything about the first hour yesterday — when I was chatting with my husband and sister-in-law. Then our friends and their daughter arrived and things are a little fuzzier. I remember the conversations, but they’re not in sharp focus. Then my sister and her dog arrived, right around the time I wanted to make the waffles and apparently that’s when my mind went into … not quite “survival” mode, but “keep it together” mode: I was talking to 2 people in the kitchen while trying to focus on cooking and, although I made good waffles and I’m sure I said the appropriate things at the appropriate times during the conversations, I cant remember any of it clearly and couldn’t tell you what we talked about. Same thing while we ate — I clearly remember how delicious the food was (of course I do), but recalling things that were said is akin to trying to remember conversations I had while drunk, it’s murky, and it worries me that I was rude or unresponsive — to my favourite people, who made the effort to visit us, no less.
When I was saying goodbye to them, I could barely see. My vision was tunneled, I had a wicked headache and my brain was a buzzing scream, but being the fastidious person I am, I couldn’t not load the dishwasher. This tipped me over the edge. I was staggering around the kitchen, using immense effort to coordinate my muscles and concentrate enough to lift and place dishes. My eyes weren’t tracking properly, my heart rate was running high and my legs were burning terribly, but I just wanted to come to an end point… Stupendously stupid stupidity. I slid to the kitchen floor, panting, crying, literally unable to walk out of the room. I slurred: “Nothing is worth this. I was trying so hard to be normal, but no social time is worth this.” My husband said, “Why don’t you just be honest?” and I said, “Because THIS is honest.” On the floor, weeping is honest. He helped me to the couch, I was having a hard time sitting up, it was just utter energy depletion, muscles unable to work. I immediately fell asleep in a sort of emergency power-down. I started to feel a bit better about 5 hours later and today I’m okay besides another bad headache and stiff neck. That’s the difference now — when it hits, it hits hard and scares the bejeesus out of me, but it doesn’t last long. So I take it back, it was worth it. I ate decadent food in the warm sun in our beautiful garden with some of my favourite people on the planet (and to Z’s credit, she tried to stop me from over-exerting myself over and over and I bullheadedly kept telling her, “No, I want to do this! I’m fine!”). But of course it was worth it and I’ll keep trying to make this life have more life in it and repeat to myself during the scary times: this, too, shall pass.
Elisabeth I have tried contacting you several times…..
Your Mycotoxins,Tricothecenes test is more important than you think.
I Spoke with Dr jack Thrasher world leading Expert Toxicologist
He reviewed my test and was able to tell the exact symptoms I was feeling caused by having Tricothecenes in my system
I just read this new blog of yours and you detail our experience so closely the same, or what I have experienced over these last 4 years.
I have steadily started getting well over these last few months by
applying the advice I have received from the Doctors and information I have gathered to remove these toxins.
All my Medical tests came back normal too.
I had been complaining about the stabbing pain on my right above my stomach just like you explain in your blog,also
We both have Tricothecenes in our System!!
After all other Tests showing negative and normal for us both
Don’t you think Common Sense points to having Tricothecenes
dangerous toxins in our System would be the cause of our illness!?
Even my new Doctor is believing this after all other tests showed Negative/Normal.
I have spoken with Irish ME/CFS they asked if I could put a summary of my experience together for them to post on their Site.
I have completed this and I included our test results for others to review and make a connection.
I have also listed other tests I completed which again point to Mold as the cause of my symptoms and all connections to the validity of those tests.
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Bear with me, Declan. I’m not doing well (spoke too soon in the blog post above). I appreciate your message, thank you.
PS: My tests are far from negative or normal. Everything comes back too high or low, so it is a VERY long process chipping away at the most urgent things. I am curious what your doctor recommended for the mycotoxins, though (short of extreme mold avoidance– I know all about that). So sorry you’re suffering this way, too, Declan.
Please watch the video pinned to my twitter Dr Nancy klimas,Immnologist NIH and Deborah Waroff,who has interviewed most of the Expert in ME/CFS.
You don’t need to watch it all… starting at 14.55 they discuss the test we both completed from RealTime Labs.
I spoke with and sent my test results to Dr Jack thrasher who also confirmed its validity and explained the toxins in detail.
He also advised to see ENT and told me what they might find.
I did and he was again correct.in what they found.
I also completed a fungi test, again was positive.
I consulted with Dr Shoemaker biotoxins Expert he advised doing advanced Brain Scan called NeuroQuant,FDA approved 2005 he recommend Expert Dr David E Ross neuropsychiatrist.http://www.vaneuropsychiatry.org/david-e-ross-m-d/.
This scan has been accepted in a federal Court of law and others which proves it validity,
It analyses 13 segments of the brain,4 out of 8 is the requirement for exposure to MOLD and toxins,i had all eight.
Confirmed by Both Dr Shoemaker and Dr Ross.
Dr Janette Hope world expert explains Mycotoxins,Tricothecenes https://www.youtube.com/watch?v=gAq9a7SMcfk
Elisabeth you need to understand those toxins from the RealTime Labs test… Dr Janette Hope explains them in simple English.
She also talks about the different toxins and what you need to remove them from your body.
This info has made a huge difference,when you understand these toxins you can understand the symptoms your feeling in your body.
Please understand I am not trying to diagnose you
I really only want to draw your attention to those Mycotoxins,Tricothecenes because that’s want we have in common and all my medical tests here in Ireland were Normal.
Infectious Diseases Doc said something going on with liver but he didn’t know quite what?
That’s a bloody simple one to answer, my body is trying to get rid of these toxins for so long.
Explains the sharp pain top right of my bloated stomach!?
Dr Irene Grant NY,World expert Infectious Disease
She explains in great detail.
Dr Thrasher passed away in February he was a really lovely Man
and extremely helpful and very given of his time.
2017 World Congress on Mycotoxins: In recognition of Dr. Thrasher’s extensive work in this field, he was selected to serve as a member of the Organizing Committee for the 2017 World Congress on Mycotoxins conference which was held in Amsterdam, Netherlands, February 27-28, 2017.
You can find all info on my twitter posts
If you send me a PM on twitter it would be much
easier to copy and paste in simple bite size and More comprehendible
Please understand its very difficult to condense this information and get my point across,it takes a lot of concentration to write these mails as I’m sure you can appreciate with this illness.
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Liz, I am so sorry to hear what a difficult time you’ve had. I can’t imagine how utterly messed up healthcare is in the US. Our system has issues, too, but it doesn’t change every four years! And the way Trump’s advisors write legislation, expecting implementation tomorrow- they’re a bit out of touch… Not that everything should stay the same, but that type of system us so complex, and the dominoes immeasurable.
I’m starting to function much better, but the pollen is brutal this spring!!! It’s all squished together; I feel like I could chew the air!
This disorder is in its nature unpredictable- I might be 100% up to doing something one minute, and headed towards ana the next. That inability to plan…its VERY hard. And as you know, you can only cancel last minute so many times before someone stops making plans.
Thinkin of ya!
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Hello love. Good to hear an update but not to hear the ongoing struggle. I am always amazed that you are my only light into this world and I have learned so much from reading your words over these years. I am always dismayed to be a nurse and know that our medical world is completely uninformed about this. Loved seeing you out in the sunshine on your birthday. Love you!
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I know I moan about our NHS at times, but I don’t know how you all cope with the horrendously complex health-care system over there. Don’t they know they’re dealing with sick people who can barely get through the day let alone take the equivalent of a bloody admin degree?!
My whole life is still spent losing time. Everyone who knows me jokes about it. I have no clue what day of the week it is and yesterday might have well of been last year. My brain is still very much injured and I now accept that and tell other people I have a brain injury, so they are more understanding of the fact I’m friggin’ loopy loo 😉
I know the payback is still brutal but the fact it lasts less time than it used to is really positive. The first 4 years when I started to feel better I still felt like I was dying after I did the slightest thing, but instead of lasting a month it lasted a fortnight, then a week, and now it only lasts hours/days.
Can you believe you actually went on a road trip? Or visited with people for 4 days in a row? You’ll get better than you are now I am certain, even if it doesn’t feel like that right now. For me it was 2 steps forward, 1 step back, but I got there in the end and you will too. Hugs xx
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God, I love you, Jak. You always say the right thing at the right time to pull me out of the hole. More later. X
Your RealTime Labs Test shows 3 very Serious toxins
This your test results
11/13/2013: Mycotoxin urine test ~ Realtime labs:
Ochratoxin 5.25 (1.8-2.0) Positive
Aflatoxin 0.98 (0.8-1.0) Equivocal
Tricothecene 0.53 (0.18-0.2) Positive
This taken from real time labs site direct.
Which molds produce these mycotoxins?
Aspergillus Flavius………………..Aflatoxin (AT)
A. ochraceus ……………………..Ochratoxin A (OTA)
A. Niger …………………………………….OTA
Penicillium verrucosum ……………….OTA
Stachybotrys chartarum …………….Macrocyclic Tricothecenes (MT)
A. versicolor …………………………Sterigmatocystin
A. fumigatus …………………………….Gliotoxin
Chaetomium globosum………………Chaetoglobosin A, C
Fusarium sp……………………Simple Trichothecenes (e.g. T-2 and DON)
You really are missing how important this is.
A woman in Scotland contacted me last year
She has been ill 20 years.
I sent her all my test results and information
She sent me email last week.
Her consultants have now diagnosed her with Mold exposure from Aspergillus, your test shows high levels of same!?
[…] A week after getting back to Seattle, I got the tests done for Dr. Kaufman (the California doctor at the Open Medicine Clinic). I had 39 vials of blood taken in 2 days — the first day, we did 9 vials, but my blood sugar crashed, so the second day we went back downtown and I did the other 29 vials. I completely underestimated the toll it would take. That evening my blood pressure tanked and I didn’t feel good. It took a few days for the effects to wear off. Just in time for family to come over for my birthday brunch. That caused a bad crash, which I already wrote about. […]
Thinking of you
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