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What a difference a day makes.

Yesterday, I had an extreme reaction to the tiny dose of doxylamine succinate (unisom) that I take to sleep. It is the only drug that has worked and I have been careful to use only 1/4pill at a time and only a few nights at a time. But not careful enough, I guess. My body totally melted down yesterday. There’s no other way to describe it. Pre-syncope doesn’t do it justice. It felt like an antihistamine overdose: very shaky, clammy, headachy, short of breath, heart rate all over the place, blood pressure bottoming out, collapsy, chilled to the bone (mini convulsions of chills), and then swollen and heat drenched…

I really thought I was going to have to go to the hospital and, once I knew I wouldn’t pass out and wouldn’t need paramedics, the fear and depression set in. I’m scared of everything. I’m scared of drugs, eating, not sleeping, talking, walking, not walking, dying alone. This is no way to live. When I asked my husband what he loved about me when he first met me, he said, “You were fearless.” This makes me lament my current brain even more. What I would give to be fearless again!

I have a tilt table test scheduled for Monday and, if the horror stories online weren’t enough to terrify me, having this meltdown happen to me yesterday has definitely doused all hopefulness that the test could go well. Today I feel awful – extremely, achy, stiff, sore, and depleted. My eyes are swollen and my head is pounding. I feel just like I did after each of my syncope and anaphylaxis episodes: like I lay all night in a room full of black smoke while MSG dripped into my veins and strong men beat me with baseball bats. So, I’m really going to go get syncope symptoms provoked in a lab on Monday? I can’t take any meds this weekend and no caffeine, food or water the day of the test. That alone could be really bad for me. I’m scared of dehydration and low blood sugar. They are also conducting a sweat test, which I’m told is painful, and they don’t offer IV fluids after the test.

There are other things adding to my current distress:
I missed my physical therapy appointment yesterday. This is the second appointment I’ve missed with a practitioner who is in such high demand it takes months to get in to see him. I’m mortified and guilty.
I wanted to call Z. and Skype with E. (my best friends), both of which must be put on hold for weeks.
I’ve told my sister no the last five times she has offered to come over for a visit.
I was hoping and praying I could go to the cemetery on my scooter with my dogs this weekend, but it’s not going to happen. It has been weeks since I’ve gone there and the weather is meant to be pretty good. This gives it a sense of urgency because it’ll be wet and cold for the next six months.
My brother the pilot has another layover in Seattle two days after the autonomic testing and I don’t think I’ll be up to seeing him.
My appointment with the neurologist to go over my test results is on Halloween at 8am. Most of you know the fear this strikes in me. Up at 6am (after trying to sleep with no drugs) without my three hours of “gather my strength” time in bed in the morning, no food (because I can’t eat that early), trying to talk to a doctor and comprehend that early in the morning…?!
My gallbladder (?) twinge is back with a vengeance and I’m scared all over again about having to get emergency surgery with this sensitive, intolerant, anaphylactic body.
This happened right after I had added back steak and bacon to my diet and right before I was going to challenge eggs, so now I’m left nervous to eat any of those things (I was so looking forward to a day with eggs!).
And, finally, I’m sure I have a mast cell disorder (which I’ll write about one day) and that makes me more scared than my normal ME scared. If I have such a vicious reaction to the drug that is meant to prevent allergic reactions, what hope is there for me? I looked into a low-histamine diet and Jesus! No dried fruit, no black tea, no apples, oranges, pineapple, spinach, chocolate, leftover or processed meat etc. etc. Just give me a pill and fix it, dammit!

Anyway, sorry, my fingers are swollen and I have to stop typing. This was going to be a very short post to let friends and family know that I am going to try my hardest to do NOTHING for the rest of the month. I’ll be out of touch, but will read anything you write and thank you for your support and understanding. Gratitude for the fact that I’m not alone. X
And for the Project Runway finale I get to watch right now! 😉

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8 Food Products I Love Right Now (because I’m fickle and, any day, I may change my mind)

IMG_20131016_111405Organic tart cherry juice concentrate. This is from Dynamic Health. I alternate (or mix) it with Country Spoon, which is thicker but not as tasty (seems to be unavailable on Amazon at the moment). I drink 1 – 2 tbs of concentrate in water a few hours before sleep. It’s supposed to be a wonderful source of melatonin, but I find it really helps my pain. Montmorency cherries are the best and you want tart cherries, (e.g., Montmorency and Balaton) and not sweet cherries (e.g., Bing, Lambert, Rainier), although both varieties have healing benefits.

IMG_20131016_105812 (1)Turmeric! A potent anti-inflammatory. I put it in and on everything. Well, almost everything ~ it can get a bit bitter. But it disappears into soups and is wonderful in things like stir fries and curries.

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Flax oil. I’ve been using it on steamed veg to replace butter and on salads with balsamic vinegar. Yum!

IMG_20131016_110439I put this jam on the crackers my husband makes me with some cashew/ walnut/ almond butter. I originally bought it for these almond cookies (they would have been delicious if we hadn’t burned the bottoms). Ingredients = organic wild berries, organic apple juice concentrate, natural fruit pectin, ascorbic acid. No refined sugar.

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After reading about Dr. Cheney’s home brew on Health Rising, I started to drink this cocktail in the morning to increase my blood volume and, hopefully, my blood pressure and maybe alleviate some symptoms (I feel no different, of course, but I’m still doing it to get some salt and fluids into me). He recommends 3 to 8 glasses a day, but I’m still only doing one in the morning. Nu-Salt (called “No Salt” on the links) is potassium chloride, plus less than 1% of cream of tartar, silicon dioxide and natural flavor. I haven’t investigated an alternative potassium source without those added ingredients (I especially try to avoid “natural flavor”). I was originally using packets of regular table salt (packets are conveniently about 1/8 tsp, which is what the recipe calls for), but the ingredients are: salt, tricalcium phosphate, dextrose, potassium iodide, and sodium bicarbonate. Then my husband found these Real Salt packets at Whole Foods. Ingredients = Ancient Sea Salt. Excellent.

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Speaking of salt, I really like Herbamare seasoning salt. It has no MSG! I can’t quite believe it, but I’m hoping the ingredients don’t lie. It is salty and herby and it’s big enough to last the next five years! Ingredients = All organic sea salt,celery, leek, cress, onion, chives, parsley, lovage, garlic, basil, marjoram, rosemary, thyme, kelp.

IMG_20131016_110246Now that I am eating legumes, but not eating refined sugar or soy, Soy-Free Vegenaise fills the mayo niche for tuna, salads, sandwiches, wraps etc. I wish the jar was about half the size because I don’t use a lot of it and wind up throwing it out before it is empty, but, once in a while, it hits the spot. Ingredients = Expeller-pressed high-oleic safflower oil, filtered water, brown rice syrup, apple cider vinegar, pea protein, sea salt mustard flour, lemon juice concentrate.

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When my mother was visiting, she helped me with some recipes that could satisfy my chocolate craving and use the cacao powder I got for my birthday (thank you, E and G!). Both recipes are from Elana’s Pantry and both can be eaten right out of the freezer. They are both gluten-free, grain-free, dairy-free, egg-free, and refined sugar-free. The brownies are also nut free (although the next time I make them, I want to add walnuts). I can’t believe how good they are (probably because my palate has changed. While making my brother try one, I said, “I can’t really remember what real brownies taste like…” And, with an unswallowed mouthfull of my healthy brownie, he replied, “Much, much better.” :D) Here is the recipe ~ we substituted coconut sugar for the xylitol. When they come out of the oven, they are quite cakey, but when I froze them, it made them more fudgey = more yummy.

The fudge balls were much better than I anticipated (see? There are only two left!). We used pecans instead of walnuts because that is what I had on hand and I rolled some of mine in coconut and some in the bitter cacao powder, which nicely offset the richness inside.

Honorable mention goes to the homemade veggie broth, chicken broth and beef bone broth that my husband made after I decided that ALL store-bought broth and stock has MSG and nasty stuff ~ even the Kitchen Basics, which I’d relied on for so long. He froze them in individual servings, so I can just take one out, put it in a pot and add whatever veg and seasoning I want. I would have included a picture, but they’re not too attractive.

Stay tuned, I will write about the new doctor when I have the energy. He didn’t look at my list, of course, but he listened to me talk for an hour and a half, which was the longest I’ve talked in over a year!

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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!!