Canary In A Coal Mine film needs our help!

canary

Please watch this amazing video (you’ll be inspired, I swear – there are cameos by Dr. Enlander and Dr. Klimas), share the link and support the project, if you can. There’s only 27 days to go. Help this film get made to raise awareness about ME/CFS. Even $1 will help!

Also, you can share your own stories (“whether you are a canary or a spoonie”) here.

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Stay tuned, I have partially written blog posts on the following topics and I aim to finish them sometime in the next few years ;):

  • Thoughts on 2 years sick (Sickiversary and 3rd Year Resolutions)
  • A prequel and sequel to my “How I Got Sick” story, which I never actually finished
  • Tilt table test and other autonmic testing
  • Mast cell disorders and low-histamine diet
  • Update my surgery post to include mastocytosis society’s guidelines
  • Allergies and sensitivities: drugs, food, dogs, dust, smells, life
  • My new environmental doctor and all the testing that’s going to cost me a fortune
  • HR, BP, circulation, and new symptoms in my hands and feet
  • How to start moving again
  • Dysautonomia
  • My scooter
  • Update on symptoms, diet and supplements
  • Photo slideshow of my crazy life
  • “Visible Illness”
  • Everything I’ve learned about helping sleep (not that it’s helping)
  • Recent NY Times articles
  • Dr. Vallings (my mother attended her talk in Ireland)
  • Dr. Chia and Dr. Kogelnick: thoughts on traveling to a specialist
  • Book reviews: Dr. Vallings, Dr. Bested, Bruce Campbell, Dr. Teitelbaum, Toni Bernhard, Dr. Blum (Immune System Recovery Plan), Dr. Turk (Pain Survival Guide)

In Search of Severely Ill, Bedridden ME/CFS Patients

Reblogged from Sue at Learning To Live With CFS:

I saw this announcement in the New Jersey CFS Association’s newsletter:

“Dr. Lapp Seeking Severely ill/disabled patients
From: Hunter-Hopkins ME-Letter Sep 2013
Dr. Charles Lapp:

We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (cwlapp@drlapp.net ) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!”

Dr. Lapp is one of the top ME/CFS experts in the world, so this sounds like a fabulous opportunity for patients who can’t normally get out to see any doctor, let alone one of the best in the world.

In addition, responding to this initial survey will help the CDC and IACFS/FM to understand how many of us are out there, unknown and uncounted. Privacy will be protected, as they only want initials and location as minimum information.

If you or someone you know is severely ill with ME/CFS, please contact Dr. Lapp at the above e-mail to at least get counted and maybe get some long overdone medical attention, too.

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! 😉

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!