Category Archives: CFS/ME

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My Doctor Is Going To Love Me

I updated my symptom list for my appointment today, printed out all my tests from this year, put together a list of my allergies and the drugs and supplements I take, and wrote out the stream of consciousness below, which I’m sure my doctor will be thrilled about (sarcasm):

Possible tests:

  • MCAD tests
  • Adrenals (cortisol, ACTH, aldosterone)
  • Hormone tests (testosterone, estrogen, estridol, estrol, DHEA, progesterone)
  • Immune panel
  • Lyme again?
  • Bartonella / Babesiosis / Brucellosis
  • Gamma globulins (4 subclasses)
  • Cyclic AMP
  • Inflammatory Cytokines
  • Natural killer cells
  • Methylation panal
  • Genetic testing (23andme)
  • Mycotoxins
  • Nagalese
  • Glutathione
  • Pregnenolone
  • Mercury/heavy metal toxicity
  • Candida (IgG, IgA, IgM antibodies)
  • Fluoride
  • Food allergy/sensitivity tests
  • Folate
  • Ph of urine

Possible treatments:

  • Immunoglobulins
  • Saline IVs
  • Myer’s cocktails
  • Glutathione injections
  • Iron, vitamin D, vitamin B12
  • D-ribose
  • ATP
  • DHEA
  • NADH
  • GABA
  • 5-HTP
  • NAC
  • Help for osteoporosis
  • Muscles help for sleep
  • Digestive enzymes
  • Aloe supplement
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Sweet Dreams Are Made Of This.

One night last week I had the worst sleep in recent memory. I was in bed at 930pm and turned the light off about an hour later. I was trying to wear my CPAP, but it has this habit of revving its pressure up incessantly which pumps air into my belly and lifts the mask off my face. Even if I can drift off with the belly bloat, the mask lifting and the increased pressure always wake me. It finally dawned on me that the machine thinks I’ve stopped breathing, so it is increasing its pressure to open my airways. This occurred to me after doing a breathing meditation where the woman said, after this certain period of time, most people have taken 12 to 14 breaths. I had taken 6. So, now, thinking my respiration is uncommonly slow, I try to speed it up and that seems to stop the CPAP revving… But I feel like I’m hyperventilating and it’s anything but relaxing.

This is what was going through my head that night. I did fall asleep for about 15 minutes, but then awoke with my sinuses swollen shut. Not the safest thing when you have tape over your mouth. So, I took the mask off and tried to sleep. And tried to sleep. And tried to sleep. The air in my guts was painful. My neck was hurting. It was too cold in my room. Something was clicking out in the hallway. I turned my heater on, I put Tiger Balm on my neck, I went to the loo, I sat in the hallway for what felt like an hour waiting to hear the click and find the culprit, but it never happened. Back in bed, I tossed and turned for hours. It felt like someone had attached jumper cables to my toes. My whole body was amped up and electrified. There was some sort of generator hum in my room, coming through the floor boards, vibrating the bed. It felt like a spaceship was idling in the garden outside my window. It felt like I was sleeping directly above the engine room in an ocean liner. It felt like the world’s biggest TENS unit had its electrodes attached to the bed frame. I tried to convince myself it was soothing, like falling asleep while being driven in the car as a child. But it wasn’t working; I was growing more and more desperate and agitated with every hour. Midnight, one, two, three, four… I finally went downstairs to where my husband was sleeping and woke him up in a panic. In all of the lonely, sickly, desperate nights of the last two years, I have NEVER woken my husband because there would be nothing he could do. But this night I was about to unplug every appliance in the house and then I was going to bang on the neighbors’ doors and ask them to unplug everything. I was wild. He threw the breaker on the hot tub while I turned off the wifi and all computer things. He told me the clicking was the thermostat (why had I never heard it before?), so I turned the heat way down.

I finally fell into a fitful sleep from 530 to 830am after taking a quarter of a Unisom, but the vibration/hum was still there. The next day, we surmised it was the outdoor garden lights. My husband pulled the plug and it seemed to remedy that particular problem. It turned out something different was going to happen every night.

Another night I awoke drenched in sweat, my body so hot I could have happily jumped into a mountain of snow. I got up and took my temperature… 97.7 degrees. How is that possible? I took it again. 97.2. Maybe it’s my blood sugar, that’s what Dr. Myhill thinks. So, I clattered around the living room until I found my tester kit. 89- totally normal. My room was 68 degrees… I know the sweats have nothing to do with temperature and everything to do with ME/CFS, but I still try to search for a better answer. I was able to get back to sleep after putting on a t-shirt, oddly. It seemed to trick my body into regulating itself.

Another night I fell asleep at 11pm and woke up at midnight with terrible pain in the center of my chest. I sat up and immediately vomited – actually, more like regurgitated – into my mouth. In the bathroom, more came up, but I didn’t have an upset stomach at all. Is this acid reflux? Every time I lay back, the pressure in my chest came back. It felt like all my nighttime magnesium pills had ruptured in my esophagus. Which is maybe what happened. I wound up sitting up until 1am when it felt like whatever had passed on down. My potential 7ish hours of sleep became 5.

Another night I woke from a nightmare where my dog, Bowie, was injured and it was up to me to save him while the bad guys were trying to find me and kill me. And I was too sick and weak to run or carry my dog. I was in a mild sweat- face and chest. This is a recurring dream of mine. I went to the bathroom to clear it from my mind and, on the way back, I tripped over the step the dogs use to get up on my bed. It HURT. My stumble and hard-hitting recovery with both palms on the floor woke my husband below and he texted my phone to ask if I was all right. I didn’t answer because I knew his healthy, peaceful brain would go right back to sleep. However, my sleep was at an end. My throbbing shin and the resulting adrenalin rush insured that.

This is what I recounted on my calendar about another night:

“woke multiple times, flexing muscles painfully, clamping jaw. Wore nasal pillow for while, scared of not breathing, switched to nasal mask, woke up with weird throat closure and odd sound being made by me, switched to full face mask for part of night, finally took 1/4 unisom, got to sleep at 345am. Woke up feeling very tired, very groggy, horrific headache, feel like I have water in my right ear. There is pressure and it’s clogged. DRIVING ME NUTS!”

That’s a glimpse into a week of my sleep. I appreciate that you are willing to read about the deranged mundanity that is my life! I will fight for better sleep and continue to try different tactics and different drugs and, one day, I will sleep, I will heal, and I will live again! I have faith. 🙂

Gratitude: No allergic reaction so far to my new nasal steroid. Also, tomorrow I have an appointment with a new (expensive) doctor. He was recommended to me by someone in a similar health situation and calls himself an “environmental doctor”, but seems to have some success with chronic fatigue and will consider out-of-the-box tests and treatments. Fingers crossed!

Title Credit

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Yes, I’ve used steroids.

Every time I try a new drug, I first get ready for the hospital. I have lived under the specter of anaphylaxis for 13 years and, in the last 2 years, the knowledge that many drugs – even ones I have taken often – can crush my lungs and shut down my airways. There’s also the fact that my autoimmune urticaria and angioedema manifests itself as tongue swelling. My allergist said, “Some people get hives, some people get puffy faces, unfortunately for you, your tongue swells and that can be life threatening.”

So, today, before spraying a new powdered corticosteroid up my nose, I ate something, drank a lot of water, locked the back door, made sure the dogs were inside, took off my pjs and put on black yoga pants and a sweatshirt (this is “dressed” in my world). I also put my phone by my purse and made sure my husband was reachable.

But let me back up. I saw an ENT doctor on Tuesday. I made an appointment on Monday with the only doctor near my house that had an opening. I really liked his bio on the hospital website, too, and I wasn’t disappointed – he was very nice and thorough. I drove myself, which was fine, but his office was down a very long hall and I was once again confronted with how hard it is to navigate the world as a disabled person. I walked that hall, but what if I couldn’t? What if eventually I can’t? You need a strong, able-bodied caregiver, a wheelchair and much more time.

I haven’t been using my CPAP for about a month (which wreaks havoc on my sleep and health) because my sinuses have been too swollen. A few weeks ago, I decided to try irrigating them with a saline solution, since everyone swears by this (I used the squeeze bottle instead of the neti pot). I felt water in my ears and it came out my mouth and eye (seriously!), as well as the other nostril. It was thoroughly unpleasant, but I persevered twice more – until the water in my ears was bad enough to stop my insisting it was healthy. Over the next week it grew more and more uncomfortable and I was forced to make the appointment after pain radiated into my eye socket and cheek and jaw bones.

The ENT doctor looked in my ears (no infection) and rummaged in my mouth and pressed on my jaw (TMJ problems, which I knew) and asked if he could spray a decongestant plus lidocaine in my nose. I explained my sensitivity to drugs and asked him if the outcome would change his course of treatment and he said probably not, but he’d like to scope my sinuses. I told him, Bring it on! We don’t need no stinkin’ lidocaine! One side was easy, the other was much more swollen and his wee camera had a tough time getting around the corners. At one point, I thought he might puncture my eyeball. That wasn’t too fun.

He offered a five day course of prednisone, which I declined and he offered to inject my sinuses with steroid, which I declined. He said the swelling seems to be allergy-related and said I should try different steroid sprays until I find one that doesn’t give me migraines and, if none of them worked, we could consider other options. So, off I went with 4 samples to research and worry about. I eliminated the steroid + antihistamine because there seemed to be a tendency to lose one’s sense of taste, I eliminated the spray with the highest incidence of headaches in the clinical trials and my final pick was based on user reviews. Of course steroid warnings are scary for someone like me: you can catch things easier because your immune system is suppressed; don’t take if you have adrenal insufficiency; it can make viral/bacterial/parasitic/fungal infections worse; tell your doctor if you’ve never had chicken pox or measles (I’ve had neither)… And then, of course, it can cause nose bleeds, holes in the septum, headaches, allergic reactions and anaphylaxis. Joy.

A few minutes ago, I sprayed Zetonna up my nose. Because it is a metered spray, I can’t try a small dose like I normally would. I use what the rest of the population uses: one spray up each nostril, once a day. At least with my antihistamine nasal spray, I only took one spray once a day when the adult dose was two sprays twice a day. So, I wait and hope that I have no instant hives or swelling, no trouble breathing in an hour or two, no rash tomorrow, no migraine in a week, and no virus or bronchitis in the months to come. Oh, and that it actually works and the swelling goes down and I can sleep and breathe properly again. Wish me luck.

Gratitude for the day: I got to see my big brother yesterday, who was here on a layover (he’s a pilot). I was shaky, hoarse, headachy, exhausted and couldn’t do much but recline on the couch while we visited for a few hours, but that was enough to raise my spirits and calm down my crazy, agitated, insomniac nervous system. Love you, bro!!

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I Scream, You Scream

What has the power to make me expend energy writing a blog post? You guessed it: ice cream!

I’m having a very hard time quitting my sweet habit. I don’t eat a lot of desserts and I can live without processed sugar, but I seem to need that little bite of sweetness after meals to seal the deal. Small bites of ice cream and chocolate have always been my go-to desserts.

All store-bought, non-dairy ice creams have carageenan, guar gum, erythritol, and “natural flavors” or soy lecithin or a lot of sugar. Although I don’t eat these a lot, I’ve felt frustrated at my inability to eliminate this habit when I have so easily and strictly stopped eating all the other food groups my doctor has specified. Bring in this $34 (when I bought it) ice cream maker on Amazon Prime. It was too daunting for me to tackle, but my husband made it look easy and I’ve had fresh, creamy, healthier ice cream for the last few weeks.

Here’s the basic info: coconut milk + sweetener + flavour = YUM

The coconut milk should be the full-fat canned kind. This is the only brand I found with no guar gum in it. The sweetener can be dates (make amazing “caramel”) or bananas or honey or coconut sugar (resembles brown sugar and my doctor has okayed it!). The flavour can be anything you can dream up ~ nuts, fruit, extracts etc.

So far I have made Caramel Pecan, using this recipe from My Whole Food Life (it was far too sweet for me with 2 tbs of honey in addition to the dates, so be careful) and Pistachio-Almond, using Food Babe’s recipe, but, beware: I used 1/2 cup of pistachios and there were too many nuts and not enough creaminess. Also, don’t use salted pistachios ~ duh! I have the ingredients for the mint chocolate chip (even though the Enjoy Life chips are made from cane juice and I’m not allowed to have it on my current diet) and I have some huckleberries with which I want to experiment. The Spunky Coconut has a lot of recipes, too. She uses hemp and chia seeds which help take the place of the “gums”. There are some other creative flavour ideas here.

Before you get started, make sure you have all the ingredients needed, plus ice and salt for the ice cream making process (there is a product called “ice cream salt“, but I think you can use regular salt, too). Don’t believe the recipe if it says you need to freeze the ice cream maker bowl first or refrigerate the tin of coconut milk overnight- you don’t.

Ok, my half hour is up and I have to go to an ENT doctor appointment for my sinus issues, which are stopping me from wearing my cpap, and what might be an ear infection from trying to be “healthy” and use nasal irrigation. Another purchase wasted. Down with neti pots!

I was going to go back and spend more time making this a fancy two-scoop photo, but I couldn't be arsed. You get the gist. ;)

I was going to go back and spend more time making this a fancy two-scoop photo, but I couldn’t be arsed. You get the gist. 😉

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I’m still here… But still going to stay away.

Hi family and friends,

I just wanted to thank you all for your kind messages and support. Sorry I haven’t been able to respond yet. I’m still in bad shape. Sleep has disappeared once again, pain has skyrocketed, daily headache, neck stiffness, back pain, tight chest. Im swollen, sore, cowering from noise and utterly exhausted. I haven’t been able to wear my cpap for weeks because my nose has been stuffy and that makes any sleep I do get unrefreshing. I’m panicking, of course. What’s causing it? What’s my next move? New drug? Start supplements again? I’m cycling through the sleep drugs again with no luck.

I’m thinking of you all and hope you understand my lack of communication. XOXO