January 1, 2014 by Elizabeth Milo

January 1st, 2014

This day last year, I said 2012 was the worst year of my life. I also stated emphatically that 2013 would look very different. And it did. But not in a good way. In 2012, I was still working for 5 months of the year. I got to spend 11 days with my soul sister, E., when she visited from Dublin. I was able to run errands, go to the dog park, talk on the phone, and see friends for 9 months of 2012. Unfortunately, that all went away. Now, I can safely say 2013 was the worst year of my life.

The details are too difficult and depressing to describe or dwell on, but neither will I paint a silver lining around this dark life. It has been unspeakably difficult, what didn’t kill me did not make me stronger, and I’m not grateful for the lessons I have learned since being sick. I am a sadder, scared-er, weaker, lonelier person and I’d give anything to go back to the ignorance and energy of healthier days.

However, I am much more aware of things I used to take for granted and I am more thankful than I’ve ever been: For every bird, tree, and arc of sunshine. For every single dollar that I saved before the abrupt halt of income. For every time a snort of laughter escapes me; every day that my legs hold me; and every book, film, song that distracts me. For every time someone vents to me about their life or asks for my opinion or feels they can use my muscle-wasted shoulder to cry on. For every time someone braves the thin ice of chronic illness to ask what life is like for us or see how I am feeling or offer to help, knowing full well they risk breaking through to the deep despair beneath.

Most of all, I am thankful for my family. My father, mother, brothers, sister, in-laws, friends, husband and dogs. (Oh, husband and dogs! I am alive today because of you! And I fight for tomorrow because of you.) Each day that they are healthy brings me solace and I experience stark, unfettered joy at every festive Facebook photo of holiday parties, restaurant dinners and energy-filled activities. So, keep singing, fishing, working, exercising and traveling, everyone! And I will live vicariously… Just, please, promise me that you do it with an eyes-wide-open acknowledgement of how short and fragile our journey is on this earth.

Here is my 2013 wrap up:

January: Was sorely disappointed at the Chronic Fatigue Clinic; saw first private doctor, tried cranio-sacral therapy.
February: Not much except stool and saliva tests.
March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now; Zyrtec trial.
April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral appliance for sleep apnea which still hasn’t happened, almost 9 months later; Seriphos trial; started Chinese herbs.
May: New nephew R. was born; saw dermatologist; phophatidylserine trial; Nasonex trial; tried Tizanidine; turned 40; dear friend E.S. died far too young.
June: My mother and D. visited; saw cardiologist; tried valarian; started Unisom; Gabapentin trial; added rice back to my diet.
July: My father visited; stopped weekly therapy; stopped phone calls for the most part; stopped Chinese herbs.
August: Stopped eating soy, citrus; added lentils, garbanzo beans; tried Trazodone; stopped all vitamins and supplements; J. and Z. gave me a scooter: my ticket to some freedom.
September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary.
October: Brother A. visited; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; tried Xanax; Zetonna trial; had hellish 2-week repercussions to autonomic testing.
November: Tried low-histamine diet for 5 weeks; methylation pathway, mycotoxin and adrenal tests; started vitamins again and Metagenics shakes; tried iv fluids and caused anaphylactoid reaction; another zyrtec trial; saw allergist; steps per day decreased below 700 and haven’t come back up.
December: New nephew G. was born; Christmas with sister; saw ophthalmologist; started juicing; tried Ativan.

Like last year, there were births, deaths, doctors, drugs, symptoms, setbacks and disappointments. And, like last year, what I see when I look at this is how lucky I am to have family that would travel across the city, country or ocean to visit me in my home and offer love and support, without judgement.

Happy new year to you all. 2014, please look different than 2013 ~ only in a good way.

Hubby sweeping in the new year, a family tradition. 🙂

Remember the little moments,

like this,

that were good.

Cheers.

~James Gandolfini in The Sopranos R.I.P.

November 25, 2013 by Elizabeth Milo

IV Saline Experiment

My doctor finally acquiesced to my pleas to try IV saline and see if it helped my symptoms at all. I really wanted to try it last month when I was going through such hell after the tilt table test (I still cannot believe how profound the payback was from what felt like a comparatively benign day of tests), but she wasn’t convinced it was a worthy experiment. It wasn’t until I sent her POTSgrrl’s post (thank you!), that she thought we could give it a try.

I scheduled the appointment for the day my period was due because that is typically when I am most incapacitated by ME symptoms. It was 6 hours from the time we left the house until we returned. I never expected such a long day. We did 2 full bags of saline over a little less than 3 hours (and it took 3 tries to get the IV line in. Twice, the nurse said, “Shoot, I blew the vein.” I didn’t know what “blew the vein” meant and I was lying down and couldn’t see my arm, so I had a panic about what complications would happen, how much blood was everywhere and whether we should continue. Once something is underway ~ a treatment, a plane trip, anything ~ I don’t fret at all, but, during the time when I can change my mind, I always start to second-guess my decision. Maybe I shouldn’t have asked for saline. Everything always goes wrong. Maybe two “blown” veins is the universe telling me this is a bad idea. Maybe I should stop it now and go home. But the nurse went and got a different person to put in the IV and she was quick and confident and, once it was done, my mind was at ease).

The worst part about the treatment was how cold I was. The room was freezing and I spent 4 hours in there covered in blankets, my heated vest (it has a battery pack), my coat, my scarf and gloves, my husband’s coat, a water bottle that my husband filled with hot water from the tap… It was ridiculous.

Below is the email I sent my doctor this morning. I wanted to post it here so I have a record of how this treatment helped. Or didn’t.

Hi Dr. XXX,

My BP was 96/63 originally, somewhat the same after 1 bag of saline and, after 1.5 bags, it had actually gone down to 88/XX. After we were finished, it was back to the 9X/6X range again.

The good repercussions:

My heart rate has been so low. WOW! Morning HR on Saturday and Sunday was 53/54 bpm and, sitting watching tv, my HR was mid- to high-50s. That’s about 15 bpm lower than usual. Activities that would normally put my HR above 110 bpms (such as walking up 6 stairs and getting in bed) were only causing me to go into the 80s. The effect lasted all weekend.
My BP was higher than normal Friday night (109/67), but went back down the next day.
My period came Saturday morning and was definitely easier than it has been in the past few months. Cramps were minimal and I didn’t feel dizzy, however my muscles were still very sore and achy.
My energy was not bad over the weekend. I took 1400 steps Saturday and Sunday, which is a lot for me.
I was able to wash my cpap on Saturday and go out on my scooter for 45 mins on Sunday, both of which would normally be too much on the first two days of my period.

The bad repercussions:

The most prominent difference is, although my HR has been low, my heart feels like it is “tripping” every so often (maybe 4 or 5 times an hour). This is brand new. It feels like a pitter-patter palpitation, like it skips a beat or speeds up for a second… When this happened, my HR was still low.
It was a 6-hour total excursion, which, for me, is unheard of. This had to have repercussions.
I felt terrible Friday night. Heavy, inflamed, wiped out.
My eyes swelled up A LOT after the saline, as did my fingers, my sinuses and what felt like my lungs (my breathing felt laboured).
The spot in my throat under my jaw that itches when I am having an allergic reaction has been very itchy since Saturday morning (saline? period? something I ate?).
I slept poorly Friday and Saturday nights and woke up too early both days.
I woke up this morning (Monday) feeling HORRIFIC. Much worse than any day in the past week. Completely wiped out, in pain, barely able to get out of bed. Feels like the flu (throat, muscles, head), but of course it’s not. I don’t know if it’s payback from the appointment and the weekend or what, but, if there were benefits from the saline, it looks like they are gone now. HR is back to being in the 70s when I’m sitting.

Thank you so much for being willing to try this experiment! I really, REALLY appreciate having someone in my corner.

I’m going back to bed for the day now because I feel worse than I have in weeks. But I’ll leave you with some scenes from my scooter-walk with my husband and pups ~ now the thing that gives me the most joy in my life.

November 24, 2013 by Elizabeth Milo

My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. 😉

Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. 🙂

My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

Jobst Relief, Thigh CT, Small, Beige
Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!

Thanks for taking the tour! And thanks to Patrick at Quixotic for giving me this idea.

Over to you: What has changed in your life since you became sick?

Title Credit

October 18, 2013 by Elizabeth Milo

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! 😉

October 16, 2013 by Elizabeth Milo

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

Organic 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.

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.

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

I 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.

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.

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.

Now 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.

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!

Rag and Bone Shop of the Heart

E.M. AND M.E. AND M.C.A.S.

Tag Archives: sleep