Grab that cash with both hands and make a stash.

This is a hard one to talk about. It’ll be more of a rant. And I’d like to preface it with all of the obvious about how grateful I am that we were in the economic position we were in when this illness started, how grateful I am that I had a few years of good earnings and decent savings, how grateful I am that my family is healthy and has never been bankrupted by health woes. I am, I truly am, and I think about–probably too much–what must happen to others with a severe chronic illness (that has no knowledgeable doctors and no decent treatment) who are in worse financial shape than we are, without our resources, who are in countries steeped in poverty, refugees fleeing wars… on and on… I do know how lucky I am. But, I’m scared. Mostly because I don’t know what treatment to spend money on and what to reject.

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Recently, after 6 months of immunoglobulin infusions, I got a slew of bills that I didn’t anticipate. It turns out that for my itsy bitsy dose of 5 grams each week, I pay $164 after insurance. Out-of-pocket. That’s $655 per month. If I had known this before starting, would I have done it? I don’t know. But now that this is the only treatment that has helped me, how can I stop? And I’m in this tricky spot. I have private health insurance because I was too scared Medicare wouldn’t cover these treatments (also because Medicare won’t cover acupuncture, nutritionists or physical/myofascial/craniosacral/massage therapy — some of the only things that have made a difference in my pain levels). After being told IVIG was not an option by so many doctors, knowing that I didn’t have a history of bacterial infections and a vaccine challenge is usually required for approval, and having Coram (the infusion service) tell me that Medicare hardly ever covers treatment, I was just too scared to give up the private health insurance that had already approved my treatment for the whole year. Of course, I have since heard from others that Medicare covers their IVIG or SCIG at 100%, but … how could I risk changing coverage now when my IgG levels have come up and that alone might disqualify me from continued treatment? I’ll have to revisit this next January when I’m eligible for Medicare enrollment again, but, if I’m still improving with my infusions, I don’t know how I’d take that leap of faith.

An aside for those in other countries or for those that don’t know this fucked up aspect of our healthcare system here in the U.S.: Medicare (government health coverage) isn’t free. You pay each month just as you do with private health insurance. It’s usually cheaper, but not always. It can range from $105-$771 a month, depending on your situation (the higher end is reserved for people who have not worked enough in their lifetimes to qualify. So, if you are struck down with a chronic illness as a young adult and you haven’t worked the requisite 30 quarters in a tax-paying job, you’re not married and you undoubtedly have little savings, then you get to pay the highest premium for our national health coverage– oh, but only if you’re lucky enough to be granted full disability, which very few ME/CFS/Lyme sufferers are). And don’t think that Medicare actually covers your healthcare in full, though. You will still have a deductible each year and co-insurance (the patient pays 20%, typically), you’re prescription medications aren’t paid for unless you get extra coverage and hospital stays can still leave you in horrendous debt. You can stay in a hospital for a few months for the low, low price of $1,260 (although skilled nursing facilities will be more because that price doesn’t cover people to care for you), but let’s take a pretty terrible example: 150 days in the hospital. In 2015, that would have cost you $47,565 out-of-pocket. If you had to stay any longer, all additional costs are your problem. The government washes its hands of you. But wait, there’s more! If you choose not to enroll in Medicare when you become eligible, your monthly payment when you do enroll will be higher–forever–usually 10% higher for each year you could have signed up but didn’t. In my case, if I’m covered by Medicare next year, I will be paying an extra $300/year because I didn’t enroll when I first became eligible. If I wait until 2018, I’ll pay a penalty of at least $440 that year, plus more each year as the premiums continue to rise over my lifetime. Lovely.

SO… Last month I finished up weeks of financial slog for our 2015 taxes and was happy to see our (and by our, I mean my because my husband’s medical expenses are only about a quarter of our total and that is solely health insurance premiums because he never needs a doctor, knock on wood, toba toba) out-of-pocket medical costs had come down slightly.

2012: $14,480
2013: $19,032
2014: $19,564
2015: $17,912

That doesn’t allay the fear, however. After utilities (sewer, water, garbage, recycling, gas, electricity) and mortgage payments, we’re left with about $20K a year to live on and medical expenses have been almost $20K a year since I got sick. That means most everything else–food, clothes, toiletries, dogs, phone, internet, gas for cars– comes out of our savings. I’m trying to be healthier, place fewer burdens on my system and subdue my chemical sensitivities by eating organic food, pastured meat and buying less toxic products. All of these things are more expensive. For the last year and a half, I’ve been paying $200/month for compounded medications instead of the cheap, generic, filler-filled ones. It hardly costs anything to get sick, but the system is rigged to bankrupt those that are.

I feel very fortunate that we had saved money before this happened, but it will run out eventually and I don’t want to make all the wrong decisions now because I’m frozen in fear of the future. Our day-to-day living is all-encompassing, so time slips by in survival mode and the big decisions never get discussed. I’m happy that we didn’t sell the house when I first got sick because we’re finally not under water and it might actually be worth what we owe again. But when do we sell? And do I switch back to generic meds? Do I stop supplements (around $100/month)? Do I stop seeing my doctor who doesn’t take health insurance? Do I not try human growth hormone or hyperbaric oxygen or nutritional IVs? Do I stop my immunoglobulin infusions?? Last year, I thought a time would come when we just moved somewhere very small and affordable, maybe a foreign country, and I stopped all medical visits and we tried to exist on pittance and make our money last as long as possible… But now that I’ve found a treatment that helps my functioning, I have renewed hope. Maybe I’ll be able to earn a living again if I keep making progress. How can I give up on that? Or should I accept the fact that this is as good as it’s going to get, income-wise? My husband will get older, he’ll be able to work his manual-labour job less and less and I won’t ever recover to the point of being able to hold a job… I think that’s the reality. I know a lot of people with this illness and many have made improvements, but I’m not sure if I know any that have gone back to full-time work.

So, we beat on, boats against the current, cut costs where we can, shop the deals online, grow some veggies, sell some stuff, and pray that in ten years time, the tides have changed for the better.

Title Credit

International Awareness Day for Myalgic Encephalomyelitis

Posted on Facebook:

Today is International Awareness Day for Myalgic Encephalomyelitis (ME/CFS) and this is my small effort to educate and contribute to a larger understanding of this disease. Like I said last year, there’s not much point in continuously sharing information within the patient community, since we know the hardships all too well, so I’m asking my healthy friends to take a minute to learn a bit more about this debilitating neuroimmune condition. Only with awareness can the tides change.

Like many illnesses, there is a large range of disability. Some people can hold jobs, while the severe end of the spectrum is horrific incapacitation*. Unlike other illnesses, however, there is virtually no budget for research (male pattern baldness has 6 times the funds devoted to discovering treatments, according to Dr. Klimas).

274c75c7-e926-442c-947c-68e020e95d2b-1-1In my own case, I have made a lot of improvement since starting immunoglobulin infusions 7 months ago. Facebook reminds me that this time last year I was bedbound, in pain, with flu-like symptoms, which still happens, but with much less frequency. Things are more stable, payback isn’t as vicious. I still use a mobility scooter in the dog park, but I have more than doubled my daily steps and I’m able to do more. Today I went to the bank. 🙂

More information:

Jen Brea on TED Blog
Occupy CFS: Very Very Aware
Learning to Live With ME/CFS: Today is International ME/CFS Awareness Day

How you can help:

On May 26th, MEAction has organised the #MillionsMissing project, which will take place in multiple cities across the world, with a coordinated campaign of demonstrations and demands. Learn how you can support it here.

Sign this petition to increase funding to find a cure.

There is very little funding for research for treatments, so, if you have the inclination and means, donations are sorely needed:

U.S: Open Medicine Foundation
U.K: Invest in ME

In the U.S:
Tell Congress to Increase Funding for ME Research.
Send your congressional rep Llewellyn King’s article on The Hill’s “Congress Blog”.
Buy a “Congressional pack“.

*More info on severe M.E.:
Severe M.E. and Invisible Illness Video
JK Rowbory: All the things that you never wanted to know about my life with an acute chronic illness

Migraine Help From Headache Neurologist

Last year I was taking an Uber (taxi service) to an appointment and, thankfully, the car wasn’t smelly with cleaning products or dangling air fresheners, but the driver had the radio on and I’ve found background noise difficult since I got sick. I asked him if he would mind turning it down because I had a migraine, which wasn’t exactly true in that moment, but I do get migraines and that’s usually a good excuse for the taxi conversation about scents and noise and why you have your sunglasses on and the window down when it’s gloomy and raining. Turns out, this man had to leave his 9 to 5 job because of crippling migraines and was really suffering until he saw a local neurologist. He said he was having a hard time with migraine meds and she put him on this mitochondrial supplement and a natural regimen that helped tremendously (my ears perked up at a random stranger talking about mitochondrial deficits causing migraines, so I bought the supplement right away, but haven’t gotten around to taking it in the last eight months). Of course, I wrote the specialist’s info down and, when I saw my therapist, I mentioned this doctor to him (my therapist sees lots of people with complex illnesses like mine and has a network of good doctors that he recommends based on feedback from patients). “Oh yes, I’ve heard great things about Dr. Murinova,” said my therapist, so that sealed the deal, I wanted to see her. “But she stopped taking new patients.” Somehow, though, I managed to slip in and get an appointment and, it was true, when I tried to reschedule it, she had nothing else open for the rest of the year, so I felt fortunate (and kept the appointment).

There are some not-so-glowing online reviews of Dr. M, but most seem to center on her brusque demeanor. She’s Eastern European and has that sort of no nonsense approach, which doesn’t bother me at all. I quite like it, in fact. At one point, I told her it would be really difficult to wake up early enough to see the morning sun and she looked at me hard and said, “Do you want to get better or not?” Gulp. Yes, I want to get better! She said there was no point in eating good food and enough protein if you aren’t getting up in the morning because the blue light signals the pineal gland to convert protein to serotonin and melatonin (see her handout below). Her bluntness was effective. I haven’t managed to change my sleep schedule, but I certainly started taking it more seriously.
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imageShe diagnosed me with: “Chronic intractable migraine, with status migrainosus and occipital neuralgia.” She also gave me a physical exam and then diagnosed me with fibromyalgia before we’d even talked about my primary illness. Believe it or not, that was the first proper hands-on work-up I’ve had for fibromyalgia since being sick — even during those early years of excruciating body pain. She said migraines are tied to mitochondrial insufficiency, IBS, fibromyalgia etc. and that low available energy kicks off the trigeminal nerve alarm which causes pain. My genetic predisposition (my father has a long history of cluster headaches) coupled with central sensitization and not enough energy to power the thalamus properly = migraines. I thought she was very thorough and obviously extremely knowledgeable. I especially liked that she had a natural protocol and a medication protocol depending on patients’ needs.

Below is the plan she gave me. I can’t say it is definitely her advice that has helped (I started immunoglobulin infusions right after seeing Dr. M), but my headaches have been much better in the last six months.

  • Change my posture (shoulders back and scapula close together). She said it will feel unnatural, but bring the shoulder blades together as much as possible. I’ve been doing this.
  • Yoga might help neck issues. Haven’t tried this yet.
  • Aerobic exercise and build muscle to feed mitochondria. My goal.
  • Good nutrition and enough protein. Try ish.
  • Deep breathing, relaxation and other parasympathetic nervous system activities. I do these daily.
  • Sleep better, but wake yourself up early for outside light from 7-9am to build serotonin (that time is very important for short wave light that feeds your brain; you need it to cross the retinas, but not through a window. She felt this was non-negotiable). I haven’t managed this, of course.
  • No more Tylenol (more than one a week will perpetuate headaches). Now I only take it once a week for my immunoglobulin infusions and on the rare occasion of a bad headache.
  • Drink up to 3 cups a day of feverfew tea (she thought this was most important. She has weaned patients off migraine meds with this tea). I drink it daily.
  • Consider SAMe (200mg/day), yarrow formula, magnesium, coq10, riboflavin (I already take the last three), other B vitamins (B12 shots are a possibility for a boost).
  • A device called Cefaly, which works on the trigeminal nerve to break the feedback loop and is proven to greatly reduce migraines. $300 out of Costco in Canada.
  • Instead of Tylenol, consider low-dose Lyrica as bridge drug, not a permanent therapy.
  • Book: Chronic Pain and Fibromyalgia by Stephen Stahl.
  • The study she gave me is great reading. It also suggested acupuncture, oxygen, capsaicin and butterbur, but she didn’t specifically mention those.
  • She also gave me the following handout, which you can hopefully enlarge to read:
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Superstition Ain’t The Way

Agh, I can’t stand it, I can’t just leave you sitting with that bad. I tried in earnest to let my last post hang out here in the e-niverse, sullying the e-tmosphere, because that’s my reality and it is uncomfortable and why shouldn’t it fester there on my blog’s home page for all a few to see? But it’s like a little lead weight in the back of my brain, so superstition be damned: I want to shout about what a good week I had. I can’t believe such a baby dose of immunoglobulins is making a difference, but it seems to be. This is so exciting. Here’s my week:

Last Thursday I was in rough shape. My period was due and I hadn’t slept as per usej, but I drove to my myofacial therapy appointment, which is 4+ miles away. That is twice as far as anywhere I have driven in the last 3.5 years. I credit my friend Jak for this because I was thinking about how she has to drive everywhere where she lives and it gave me a little push. I also have been doing our finances for tax season and saw that I spent $650 on Ubers (taxi service) in 2015–solely to get to/from healthcare appointments–so that gave me another incentive to drive myself (truthfully, I probably shouldn’t have driven. I wasn’t all there–not quite present enough–and doubt my reaction times were optimal, plus I got a bit lost, but I’m proud of myself for pushing my envelope). Oh, and I stopped by a grocery store on the way home! Very briefly–to buy chocolate Easter eggs–but still!

I had three complicated things I needed to mail, so, Friday, I drove to the post office for the first time in almost 4 years and spent quite a bit of time standing at the counter, talking to the postal woman, boxing, taping, addressing etc.

Family love at the cemetery.

Family love at the cemetery.

Saturday, even though my period had just started, I was still able to go to the cemetery on my scooter with the boys and husband. I want to take a moment here to remember the first few times I went to the cemetery on a mobility scooter in 2013, a year after being housebound. I wept looking at the trees and feeling that freedom, then I almost passed out from the exertion of a 2-sentence conversation with some people we ran into and then I went home and paid for the jostling of my bones with days of pain. On this very day in 2014, I was struggling through the aftershocks of a cemetery trip that were worse than anything I deal with now: 

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Easter Sunday I wasn’t doing too well, but I still managed to put together a treasure hunt for my husband (with the aforementioned chocolate eggs), which involved walking all around the house and up and down stairs, planting clues. I did a “Find It” treasure hunt for the dogs, too. Easter isn’t just for kids.

Monday, I did laundry (no folding or putting away, but still…), talked to my friend for 1.5 hours (he did most of the talking, which is good because, although I’m not drained as much by prolonged conversations, it still definitely hits me hard) and then I drove to the dog park with the boys… by myself… and actually walked a little bit… *Pause for gasps of shock and awe.* I’m going to take another minute to remember the first time I made it to the dog park after those long horrible months, years: My husband drove, of course, and I walked excruciatingly slowly to the gate, feeling winded, heart rate through the roof. I made it inside and then sat on the ground just inside the gate. When somebody I knew tried to talk to me, I nodded and smiled feebly and then looked at my husband imploringly until he deflected the conversation away from me. The memory of that effort–and the fear of the repercussions–brings tears to my eyes.

Tuesday, I had my infusion and, Wednesday, I drove to an appointment (close by)–on the day after my infusion, mind you.

Getting fluids in the garden.

Getting fluids in the garden.

We’ve had gorgeous weather this week and, although it certainly helps because I’ve been sitting in the garden for hours every day, I don’t think I can say it is the cause of my good week because the uptick started days before the sun shone. Thursday, we took advantage of the weather and went to the biggest, bestest dog park in Seattle, which is a ways away on the East side. I haven’t been there since my birthday last year in May and it was such a treat to see Riley swim (while Bowie stood in the shade, panting and looking miserably hot, as if he wasn’t a short-haired breed that came from Africa). We spent an hour and a half there (I had my scooter, so didn’t walk) and, when we got home, I started cooking lunch. I didn’t even feel the need to rest. I better add these: !!!!

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“Ducks, ducks, ducks, gotta get the ducks.”

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“Don’t make me go out in that sun, Mama.”

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“Seriously? Another photo? Hurry up, there’s hardly any shade here.”

I’ve been dragging again the last few days: headache for the first time in a while, very stiff neck, muscles feeling heavy and painful, slightly sore throat, sensitive to sound etc. Probably because Friday I started to write this post about having a good week and the gods’ ears perked up. BUT, I’m dressed, I’m sitting outside, I’ll cook something in a bit, I’m cheerful. I’m not in bed, sick, poisoned, despairing. I’m functioning. I’m even writing.

So, there. KNOCK ON WOOD, TOBA TOBA, BAD HARVEST, PATUEEY OVER THE SHOULDERJust let this be. My bowels are a nightmare, my sleep is horrific, my brain packs it in on a regular basis and my stamina, energy and strength are still about 1/4 of what they used to be. But 1/4 is better than 1/10. I’ll take it, gratefully.

Title Credit <— click on it, go on, it’ll make your day better. 😊

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Mount Rainier (taken from the car window while speeding down the highway).

P.S: Dear friends, please forgive my ridiculous shiteness at answering your comments here on my blog. I appreciate each and every one of them and I’m humbled that you read my rantings at all, let alone take the time to comment. It really means a lot and I’ll try to do better. Thank you! X

“Bad harvest, bad harvest!”

I’ve been hijacked by head pain. I’ve lost 10 days. I really would like to believe that superstition is meaningless, but it is quite astounding how every time I take a chance on sharing good news, I get walloped. I waited 5 weeks to write my last post — until I was sure this small uptick was lasting — and I was so excited to share a positive update with my family and readers for a change…. And don’t tell me it’s a self-fulfilling prophecy because it’s not. I didn’t fear jinxing myself so much that I manifested this pain. Once I wrote the post, I got on with my life with renewed hope.

Friday the 29th, I was dragging and it felt like I was coming down with something. Saturday the migraine hit in earnest and I’ve been crippled ever since besides a random afternoon of respite this past Saturday when my friend Z and her daughter were visiting (and Z commented on how much more I was able to engage since the last time she visited (there I go broadcasting improvement again)).

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Bowie loves baby A (who isn’t really a baby anymore).

I heedlessly declared “It’s gone! It’s gone!” and, that night at 4 in the morning, I started to get a migraine aura — those jagged, moving silver lines that blot out your vision in certain spots. It was like the migraine slept, regained some energy and came back with renewed determination. Yesterday and today, I’ve been in tears.

I’ve tried all my tricks (caffeine, feverfew tea, cervical spine stretcher, ice, heat, acupressure, extreme hydration, fresh air etc.), but this isn’t one of my normal chronic headaches. I feel it moving around in the morning, when I bend over the pain explodes, my neck hurts, I’m sleeping more, but it’s not helping and I have horrific nightmares every night. I thought it was hormonal, but my period came and went and the head pain got worse, if anything. I thought it was because I increased my probiotic or was eating a lot of cottage cheese, but I’ve stopped both for days. I finally risked buying a mattress topper: it’s natural Dunlop latex and had hardly any smell at all, but it seems the most obvious culprit. I took it out of my bedroom a week ago, though.

I’m starting my Monday immunoglobulin infusion in about an hour. I have this hope that the Prednisone, Benadryl and Tylenol will kick the pain away, but I have this fear that the Gamunex will make the headache worse. After all, that is the most common side effect and I suppose this could be some reaction to the IG that I’m about to double-down on by infusing again.

Anyway, a few days after my last post where I told the gods to cover their ears (which they obviously didn’t do), we were watching Downton Abbey and Anna says to Mr. Bates, “Bad harvest, bad harvest!” and explains that this is what the farmers would yell so the gods wouldn’t be jealous of their bountiful crops and take them away. A timely reminder that my superstitions have been shared by our ancestors for hundreds of years and it’s okay that I’ll be yelling bad harvest! at the sky like a crazy person, spitting over my shoulder, pulling on my earlobes and knocking on wood the next time I dare to tell you something good. Feel free to join in.

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This is what I miss on all that days I don’t go outside for fresh air.