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

I can’t even.

I’m in a bad headspace. Feeling overwhelmed and hopeless, like I just need to give up. I know what sparked it. I got a bunch of blood tests done — things I haven’t had tested in 1 to 3 years — and they’re all still a mess. I’m still a mess. I haven’t made any headway in years. I just feel defeated. There are so many things my body is fighting and either I’m not helping or nothing I do helps. But mainly I feel useless and inept because I can’t manage to research something thoroughly, plan an attack and implement it. I can’t commit to anything because I have no faith that anything will work. So many pills. So much money. So much effort. So much information to process. So many competing theories. So much time scrambling in one place, getting nowhere. I do nothing but read how to help myself — hours everyday for years — and I just wind up feeling like I’m drowning more and more because there is too much.

I can’t seem to manage a methylation protocol, or a detox protocol, or brain retraining like everyone else can. Or a liver cleanse or lymph drainage or help my leaky gut or what about parasites? I can’t seem to manage any diet changes: watch out for histamine, salicylates, oxalates, sulphur, tyramine, too much/too little protein, too much/too little fiber, too many carbs, not the right kinds of fat, dairy, sugar, mycotoxins, pesticides, chlorine/lead/chloramine in water, your tupperware is plastic, your pots and pans are killing you… it never bloody ends! And why does everyone do so well with physical therapy, acupuncture, myofacial release, Bowenwork, craniosacral, reiki, feckin Feldenkrais and nothing seems to work for me? I’m thinking about NAET and muscle testing, frequency machines, homeopathy and EMF sensitivity because what if?? But I know they’re all just black holes. Everyone has a magic pill or a serious warning: Don’t sleep on foam! Don’t go in a hot tub! Your milk must be raw! Your dogs are killing you! Don’t stretch if you have EDS, don’t spend too much time lying down if you have dysautonomia, enemas are wiping out your good bacteria, you probably have Lyme–go on antibiotics, the longer you wait, the worse it is! You definitely have mold because you live in Seattle–leave your house and possessions behind and get clear! I’m so over all of it. There’s no point in giving me advice to just tackle one thing at a time because I can’t. It doesn’t work that way. Time is slipping by; I’m getting older just sitting in one spot. Everything is connected and as soon as I decide to do one thing, I read how that can tip another thing out of balance and I freeze… and wind up doing nothing. My brain does not work like it used to. This is most frustrating of all.

Imagine you’re suspended halfway up a cliff face, trying to get to the top. You’ve spent months researching the best path to take and you have some energy, you’re ready. As you start to climb, people abseil past you, screaming, “Don’t go that way! There are perils up ahead!”
Then others beside you say, “Nah, this is definitely the best way, they don’t know what they’re talking about.”
Then other people all around start chiming in and you listen–while clinging on to the crumbling rock for dear life–because so many have made this climb before you: “If you want to get to the top, go left.” So, you start researching that path.
“No, go right.” Better check out that option.
“It doesn’t matter which way you go if you don’t eat this meal first.” Oh shit, glad I didn’t start climbing yet.
“No, doesn’t matter what you eat or where you climb, you’re fucked if you’re not wearing the right gear.” Energy is draining out of you and the fear is creeping in.
“Don’t be silly, you just need to spend all day every day telling yourself you can get to the top and you will.”
“Nope, actually this mountain is insurmountable when you’re as weak as you are. Just hold on as long as you can and hope that you get stronger before your grip gives out.”
And… I literally can’t even.

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Anyway, I pretty much want to burn every book I own, cancel all my appointments, throw out all the supplements and extricate myself from every group and forum, go to bed and give up… and, if I’m truthful, it’s all sugar’s fault. I have a grade A, deep-seated, fully-in-denial addiction and my candida blood test came back twice as high as the high result from a year ago that I ignored. Or at least candida IgM did and that’s the antibody that shows active/acute infection, right? I don’t want to go on another elimination diet. I don’t want to deal with something that will apparently keep rearing its fungal head forevermore every time I eat some ice cream. I don’t want to take prescriptions for months and deal with die-off and herxing for weeks. I just don’t. Even my husband is clanging a warning bell about candida, gently encouraging me to just try to quit eating sugar temporarily and I’m like a petulant child. I hardly eat any compared to the old days! I’ve given up so much! And then I ate a bag of kettle corn while pouting. This is waaaaaaayyy harder than booze and cigarettes. Way harder than gluten, dairy, nuts or anything I’ve tried before.

So there’s that. And then there’s these:
Cholesterol and LDL are higher than they were 8 months ago.
CMV IgG, which has been negative 4 times in the past, is now high out of range.
HHV6 IgG is still high out of range.
Mycoplasma Pneumoniae IgG is higher than it was (out of range).
EBV IgG is much higher than it was (out of range).
Sex Horm Binding Glob and Estradiol are high, whatever that means.
Total IgA and one IgG subclass are low.
VItamin D and Vitamin B12 are both low.

I’ll be talking to my doctor about all this in a fortnight, stay tuned.