March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

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Yay! Beach!

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Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

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I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

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My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

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19 thoughts on “March Update

  1. Claire says:

    Wow, there’s a lot going on that you are tracking and monitoring – it’s great to hear that you’re keeping on top of some of it though.
    Sending you happy and healing vibes.

    Liked by 1 person

  2. bertieandme says:

    I’m so pleased you had nice visits with your folks and managed to get out – loved seeing your photos 🙂 😮 to the furry child running off – my heart was in my boots for you!

    Also pleased you’re at least getting a block of sleep. I find that if I can get 4 hours I don’t feel too bad the next day. It’s those nights where you wake every hour on the hour that I feel like I’ve been dragged through a hedge backwards. But, oh, for 9 hours kip……wouldn’t that be gorgeous?!

    You’d probably be able to handle the Travel Scoot mobility scooter, which folds up to go in the boot. http://www.travelscoot.com/ Affording it is another thing entirely though 😦

    Chuffed you’ve managed to re-introduce some different foods, at least you have slightly more choice for meals.

    Fab to see you posting and to catch up on all your news 🙂
    Jak x

    Liked by 1 person

    • Jak, I actually wrote that account of my dog legging it for you. I thought, this is really boring, but Jak will appreciate it! I knew you’d empathize. 😉

      I should feel better with the (perceived) better sleep, but I don’t. I still wake up with my crazy dreams, but, OH MY GOD, as long as I wake up in a dry bed with no shakes and sweats, I will never complain.

      The Travel Scoot looks great, except I don’t do well without a lot of suspension and padding. My bones and cervical spine just can’t take the beating, so I’m thinking it’ll have to be a bigger model that I can’t transport in a car, but will be useful in the future when I have a smaller dog… (like, in a decade, if I haven’t sold all my possessions by then to survive!).

      XO

      Liked by 1 person

  3. themislovcom says:

    What’s being done about the reactivated infections and was that tested by a ‘normal’ lab?

    And yes a very handsome dog ;D

    Liked by 1 person

    • I believe LabCorp did those tests — through Dr. Chia and through my ND. Nobody has really tackled the infections yet. Dr. Chia wants me to take Equilibrant, but I haven’t had the nerve yet. My ND wanted me on Humic Acid and Nystatin, but I haven’t been stable enough to add them yet.

      Liked by 1 person

  4. Hugs as always.. Happy Eclipse day and Spring Equinox.. xx

    Liked by 1 person

  5. kneillbc says:

    Oh, Liz!! I read this and burst into tears. You and I got sick the same month, and there are so many similarities. I went to write an ‘anniversary’ of my blog- comparing this time last year to this year is SO hard. I’m better in some ways. I have more knowledge, and less fear, but I have had SO little progress with getting the right diagnosis and subsequently treatment, I feel like screaming “A YEAR”!! I used to accomplish more in a week than I have in the last year. On the other hand, some things are worse. I’ve become more sensitive to more things, and suddenly not being able to touch my art for fear of a reaction is really UN-fun. It sounds like you are so much further than I am from a diagnostics standpoint. Must drive you mental that your insurance doesn’t cover alternate forms of medications. The difference in cost would be taken up by one ER visit. False economy.
    The scooter thing. I gotta get me one. My biggest obstacle- pride. I’m fat, and I don’t want people thinking ‘If she’d just get off her fat ass, she would have no problem with walking two blocks’. How ridiculously vain of me, eh? I saw one online that goes up to 45 kph (~20 mph) THAT would be awesome- I could actually go ‘hiking’ on the trails behind my house! There must be something you can do- apply to a charity, or do a crowd funding thing. As if you have the mental energy to tackle that…

    Hang in there. You will not end up in that awful place forever. I understand the fear. I know I have the same one sometimes. You can handle ANYTHING! I’m trying to think of a clever MCAS acronym…but I’m starting to not feel great, and I’ve suddenly gone fuzzy.
    Thanks for the update!
    Karen

    Liked by 1 person

    • Oh, Karen, I totally understand. I went steadily downhill for over 2 years. I’ve been going downhill again the last 6 months, but having that steady increase in 2014 has given me hope that it can happen again.

      Honestly, diagnoses have been half-hearted and useless in my experience. The doctor who diagnosed me with MCAS wrote in his notes that I have an inflammatory disease that spans the bowel and spine with autoimmune components. I don’t care what they call it and I can’t tolerate any treatments, so what’s the point? I was diagnosed with ME/CFS, but there are no treatments, so what’s the point of that, either?

      It’s a shame disabled people have to be scared of prejudices. I know that if I were older or heavier, I would get treated worse. It’s already hard enough dealing with the male-doctor/female-patient-with-a-rare-disease dynamic. I’m sorry you have to have be conscious of how others will judge you, but f*ck ’em. We only have one body and one life. ❤

      Like

      • BONNIE JOHNSON says:

        AMEN!!! MY LAST 4 MONTHS HAVE BEEN SO HARD & LED TO MY DESIRE TO HAVE A MOTORZED CHAIR & NOT GO ANOTHER SUMMER WHERE I CAN’T GET OUT & ENJOY!
        THIS IS ALSO THE YEAR OF BEING TOTALLY PISSED OFF AT DOCTORS, ESP MY DOC WHO 4 YRS AGO TOLD ME HE KNEW ABOUT CFS. HAVEN’T HAD A SHOWDOWN YET, BUT SOON!

        Like

      • kneillbc says:

        Thanks, Liz. Of course, you’re right. Time to look into that scooter, or maybe I could use a motorized bicycle…I wonder if that would fatigue me too much.
        There are a few reasons for getting the diagnosis, but I’m halfway thru composing a blog that will include just that, so stay I have another thing on my mind I thought I might mention. If you haven’t had any relief from your constipation yet, don’t wait any longer. If it’ sheen that long, it’s beyond what you can take care of yourself. For me, the thought of going into the ER is frightening; I’m always just a little worried that they will try to keep me longer than I need to. The reality is though, that you’do end up in hospital much longer if you get a torn colon. I can only fathom the embarrassment, but a very wise person once told me “F*ck ’em. We have one body and one life.”.

        Take care!
        K.

        Like

      • Ha! Karen, that’s awesome..:-) Well, I have an appointment with a gastroenterologist in approximately 14.5 hours, so I’ll let you know how it goes!

        Like

  6. BONNIE JOHNSON says:

    HI LIZ–I JUST DISCOVERED MOTORIZED CHAIRS–LIKE AN OFFICE CHAIR–HEAD REST, SEAT GOES BACK. THIS IS WHAT I WANT. U CAN GET LIGHTER, FOLDABLE MODELS & ALWAYS 2ND HAND UNITS AVAILABLE. CHECK THEM OUT ON GOOGLE. BJ.

    Liked by 1 person

    • Thanks, BJ, I’ll look into it, although I *think* I prefer the idea of a scooter.

      Like

      • BONNIE JOHNSON says:

        LIZ, R U GETTING CORT JOHNSON’S BLOG? GREAT, GREAT INFO. HE’S DOING SO MUCH FOR OUR COMMUNITY. EVERYONE SHOUD BE GETTING IT, I THINK.

        Like

      • BONNIE JOHNSON says:

        BIGGEST DIFFERENCE, I GUESS IS THE CHAIRS JUST HAVE A JOY STICK CONTROL & R EASIER TO GET AROUND SMALLER SPACES & IN THE HOUSE–MORE COMPACT & MAY NOT GO AS FAST AS SOME WANT. I DON’T NEED FAST–JUST WANT TO BE ABLE TO GET AROUND MORE WITHOUT HAVING TO FIND A PLACE TO SIT EVERY 5 MINUTES!

        Like

  7. Jackie says:

    I smiled at the part where it didn’t matter how sick you were when your baby ran off. I know that feeling so well!!

    Like

  8. […] but I’m willing to put up with that). At the beginning of this year, I was reeling from the terrible nocturnal reactions and tongue swelling I had been having, so I wasn’t willing to try anything. Finally, in May, […]

    Like

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