From Bed.

It’s with a general heaviness, random panting, irregular heartbeats, in and out of focused vision, an incredibly determined migraine, and somewhere around 2-3% energy that I write todays post; pale faced and slow moving. I said I’d write good bad or ugly, so here’s sticking to goals. I’m sitting up in bed, with the computer propped up on a pillow and pill wrappers and bottles skewed about the room. If you didn’t know any better, it’d be anyones guess what’s wrong with me. Aids? Cancer? Recreational Pill User? I don’t even say the name anymore when people ask. “I have health problems.” It’s surprising that people don’t follow up after you spill that general type of information. They usually nod and that’s the end of that.

Poor Monty. I always feel bad for him on days like today. It’s beautiful here. Sunny, cloudless. I hear the neighbors who are sitting out on their docked boat- they must have an awesomely hilarious guest over today because they keep erupting in this uproar of laughter and somehow, it helps. I like hearing it, even though it doesn’t involve me. Monty is wondering why we are indoors when the weather is what it is. And yet somehow he knows. He doesn’t insistently paw at me and make the whiny strange sounds of a dog trying to speak a humans language in an attempt to get me outside. He sees the signs and lays down next to the bed. I left the door open so he can come in and out as he desires but he stays in here next to me. What a friend.

As usual, I try to connect the dots. This is the fourth migraine this week and my medicine is running dangerously low. Insurance only pays for 9 tabs a month of Frova, (it’s a new one I’m trying) and I used up all the maxalt already. I ask the pharmacist how much 9 tabs of Frova is out of pocket and she clicks away on the keys and I wait for the damage. “Two hundred and thirty dollars,” she finally gets out. I laugh and she, sympathetically, laughs too. “Sorry.” “It’s OK.” But we both know it’s not really OK. It’s strange that a company decides how much medicine they’ll cover for you in a month, almost arbitrarily. It’s strange that someone who needs the benefits of insurance the most is often denied. Strange that the cost of healthcare under an insurance policy is of an affordable, negotiated rate and yet if you aren’t covered those rates are 200% more. That’s one way of saying it. Strange. I count my three remaining pills and send a prayer to the universe to let up on these train wrecks of migraines I’m getting. Most likely, I’ll have to dig in out of pocket again and feel that scary, hopelessness of watching my parents savings go to pills. I cringe when I think how much of it has already gone to medical expenses. Too much.

But there’s no sense in fearing it, in having anxiety over it. It’s our livelihood we’re talking about. “What’s the alternative?” my mom asked as we were going over finances before my visit to the CFS clinic in Miami last year. “Sit around and suffer endlessly while holding onto our savings?” The truth is, we’ve been rich and we’ve been poor. We, like so many families, have felt the sting of the placid economy in the last two years. My mom and I are unable to work, so my step-dad has been the only one bringing in income. And his workload has been lower than he’d like, but you do what you can. Today, we’ve got a roof over our heads, food on the table, and we have our damned pills. So no stressing about when the money runs out. My dad told my mom never to worry about this sort of thing. That she and the kids would always be provided for. And so far, he’s been right.

I know this sounds like a sob story of a post, and I don’t want it to be confused with a cry for help or plea for sympathy. It simply is the reality of this illness and day-to-day life. There are so many people out there who don’t have a parent’s couch to crash on, who don’t have their parents to pay for medical needs, and are forced to work fulltime–through the pain, exhaustion, and ache of this, and most of the time it’s silently, because no one really gets it. Telling your boss or co-workers you have “Chronic Fatigue Syndrome” doesn’t seem to go very far. Many times it worsens the pain from the sting of not being believed. When I told the owner of the gallery what I had, he suggested yoga, and I contemplated shooting myself. But once again, my point, is that you don’t have to be believed. Don’t make that your cause. They will or they won’t believe you. Only you can know what your battle consists of, and we live among so many who are fighting quiet battles of their own. We aren’t the only ones; far from it. You can only do you, and you can only do today. All I can tell you, like my mom tells me, is that there is so much research going on right now–More than there ever has been, and there is this tangible feeling of hope that comes to me at night sometimes that there is an end in sight. We will get there. So hang on.

Probably the rest of today will be like spent like this, in bed. Luckily I’m reading an incredibly good book (Freedom by Jonathan Franzen; if you’re couch or bed bound these days, or simply looking for a great read, I highly recommend it.) so I’ll have that to carry me. My migraine has finally subsided enough to where I should be able to read sentences and actually comprehend thoughts without wanting to vomit. His writing is incredible. It’s more than just a wonderfully told story, it feels like a literary education in itself. I underline all the words I don’t know in blue. I’m in love. Anyway, it’s time to rest some more. Which will be followed by more resting. And then possibly I’ll conjure up some energy and brush my teeth! May even get dressed! If I’m feeling really adventurous, I may even braid my hair! Nah, who am I kidding. I’m just going to read.

Health, Happiness, Bed Bound.

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27 thoughts on “From Bed.

  1. thank you for that post. i was literally having similar thoughts when I was up at 5am thinking about how I’m going to afford $20,000 treatment for my lupus/ RA when I turn 26 and my moms insurance will no longer cover me. And I’m reading the doctors bill — “Tylenol– $90” are the FKM? i didnt even ASK for tylenol.

    Liked by 1 person

  2. “You can only do you & you can only do today.” <—I needed to hear that. Thanks for this post. Here's hoping those migraine's take it easy on you and that those pills last a little longer.

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  3. I am in the same situation however I am 41 years old and living with my parents. I am in the process of filing for disability. While I am filing I am eligible for state medicaid, along with a small stipend and food money. Thank goodness I have this. Most of my meds are free, my fibro and depression meds range between $1-3. Hopefully you can try to apply. God Bless!!!

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  4. I’m with you sister! Even though I feel extremely close to my family and you and mom, it’s nice to be able to read what your going through on your own terms and not have to ask the standard “How are you feeling?” I’m praying for you to feel better!

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  5. Hi,

    This morning I was nominated for two awards with very similar names, which was slightly confusing. One was called ‘Versatile Blogger Award’ and the other ‘The Vesatile Blogger Award.’

    Both had different pictures and yet both required me to share 7 things about myself and to nominate 15 other blogs which I follow.

    You can find out about them and my response to them here: http://reson8freedom.wordpress.com/2012/03/25/versatile-blogger-award-the-versatile-blogger-award-a-double-blessing/ but even though I am sure you have already been nomimated for at least one of them I thought I would nominate you for the both of them.

    I hope that is ok but I really do enjoy reading your blog and wanted to include you in my nominations.

    Kind Regards

    Kevin.

    Liked by 1 person

  6. Never thought that just saying I have “health problems” would be easier than telling people I have CFS. I should totally try that. Though since I developed POTS last year, I’ve found that saying I have “a heart condition” tends to shut people up fairly quickly.

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  7. Thank you for sharing. As most of us commenting, we all have our days. You accept those that are bad and you cherish those that are good! I felt your heart and I am right there with you sister. Hope you are able to get out it the sunshine soon.

    Kathy

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  8. Thank you for your diligence in writing, even as miserable as you may feel. I look forward to your post. It helps me! Fibro/CFS is such a mystery even after all this time that I’ve suffered with it myself. Like others, it’s nice to communicate with someone who knows exactly how it feels and can write about it. Hoping your day gets better. Kudos to Monty. My version of Monty is named Tiny – he’s 10 now. He certainly is the best loyal friend and snuggle buddy I have. And I am happy for the person with the above comment that states they’ve found great help in diet changes. I’ve tried that diet and it didn’t help me, but everyone is different and good luck to you if you succeed in it.

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  9. I think sometimes you just have to put it all out there. Diseases and people’s reactions are strange things. You get sympathy and compassion for cancer, you get ignored for autoimmune diseases, and you get yelled at for addiction. I hope you feel better soon.

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  10. They will or they won’t believe you… That’s definitely something I need to remind myself of on a regular basis.

    I’m sorry to ‘hear’ things have been rough this week but happy you still have a few pills up your sleeve. :) Strange isn’t usually the way I describe the struggle to get medications (even with insurance) without spending every available dime… lol! I’ve had similar discussions with the pharmacist about costs after insurance stops paying. It’s not a fun conversation (no one should have to pay $230 for 9 pills), but I’m glad you’ve got what you need right now and hope it doesn’t come to that.

    There’s not really anything I can say except – I understand. I’ve got my own version of Monty at my house and feel comforted when he lays beside me and accepts my lack of mobility in stride. Hope you’re both able to get out and enjoy the nice weather again soon! :)

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  11. My mother, also, has fibro and has had it for over five years. It’s been tough living with her exhaustion lately, as it has been becoming more and more severe as time passes. It’s encouraging to see that you can still, apparently, get around fairly well some of the time, but I symphatize with you over the day you are having today. I find Mom regularly asleep until after noon, and even when she does get out of bed she’s groggy until late afternoon. Her life for quite some time now has been sleeping, eating and watching TV, and it has started to seriously affect my life. Any advice on coping with this?

    PS. I love your posts, they’re very encouraging!

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  12. Your post brought tears to my eyes. You know what question I am sick of? “How are you feeling?” Especially from my inlaws. I’m tired of answering “like hell, as usual,” or, alternately “fine”. I’m also sick of my husband having to tell them over and over “yes, she still has fibro. It doesn’t get cured. Here’s what pill/treatment/diet we’re trying this week.”
    Although, apparently, if I just follow a ridiculous and ridiculously expensive diet, which requires a lot more walking and standing, I’ll be cured!
    If that doesn’t work, well, have you tried leeches? Or trepanning? (doubt that’s spelled right.)
    You are NOT alone. That is all.

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    1. Ugh. I share your pain with the in-law part. (and the rest, but that part is probably the most annoying!)
      Mine have a new diet, allergy, supplement etc, every time I talk to them! Very fun conversations every month… Just wanted to know I feel your pain!!

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  13. This makes me feel a lot better about spending the last two days in bed when it has been +20 C out. Also makes me feel simultaneously guilty and thankful for the Canadian health care system, although our conservative government is doing everything it can to corporatize it. That scares the crap out of me. You’re right, everyone, regardless of income, should have access to the health care they need.

    I don’t get migraines too often, a few times a year, but I do get pretty bad headaches almost everyday. I’ve had a couple things that have helped me (besides medication), if you want me to share these with you let me know, one is a natural remedy and one is a flaky, not scientifically proven remedy (I don’t want to be no dip shit giving you unsolicited advice telling you yoga or a gluten free diet will cure you, but I’ll be glad to share anything I have picked up along the way if you want to hear it).

    Sarah

    P.S. I don’t hear any laughing neighbours, but I do have one who appears to be practicing the french horn. It’s loud enough that it is enjoyable, but not too loud that I can hear all the mistakes. Either way it puts a smile on my face.

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  14. I’ve been only following you for a short time as I saw a friend like one of your posts and thought I’d read-so I am probably waaaay late in your story. I just want to make sure you’ve tried to get your meds for free directly from the drug companies? I know they have programs where they will give it to people who can’t afford it or who’s insurance company won’t cover it. When my unemployed, un-insured sister went through all kinds of medical problems, a social worker suggested this. I think her doctor helped her fill out the necessary paperwork. Again, I apologize if my suggestion has already been done. I wish you well. I sympathize with you as again, my sister suffered for so many years without knowing what was wrong with her or without any relief. I’m amazed by your strength and enjoy your posts!

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  15. You put a voice to the thoughts I feel. No one except very close family and friends know what I go through. Even then, I don’t vocalize my pain because I feel like it’s not worth there ears, so I suffer in silence. Along with a slew of health problems, I have fibromyalgia and cfs. I’ve had a cervical fusion in my neck. I still have herniated discs in my neck and back. I have scoliosis and arthritis. And degenerative disc disease. And regular migraines. Most people don’t know any of this. So when I’m tired and can’t get up the energy to say, go take a shower, or answer the phone, I know they think I’m lazy. They (people in general) don’t understand and I don’t even try anymore. I used to have insurance when I worked, but when I couldn’t work anymore, I lost my insurance. I tried to get private insurance, but I was to “risky” to cover – so no insurance. I can’t get disability (they denied me – apparently, they don’t believe I’m sick because I USED to work). What is someone to do in my situation? I carry on like nothing is wrong. I have two small kids who need me and I suffer in silence with the help of pain meds and muscle relaxants – the only 2 meds I can afford to purchase each month out of pocket. Without them, I couldn’t get through the day and would be bedridden. There is no “getting better” for me until I can actually start getting treatment again, but who knows when, or if, that will ever be.

    Anyway, from one person to another, from someone who understands your sickness and pain, thanks for documenting your journey. It’s nice to know I’m not the only one (although I don’t wish this on ANYONE).

    :)

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  16. Also posting from bed today. I AM going to shower today, I’m promising myself! Thank goodness for parents and HEAR, HEAR to the inhumane arbitrariness of insurance & pharmaceutical companies. May you continue to have (at least some of) the resources that you need. And may the patron saint of gluten protect us from the gluten-is-the-root-of-all-ills brigade. :)

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  17. Regarding the first post–I see what you have to deal with all the time now. I’m sure you’ve tried every diet and vitamin around, right? I can see how that would be frustrating and another cross to bear. I guess it helps knowing that they mean well, though. I,too, am a big believer in “food as medicine” and the holistic approach, but I would never make any guarantees or promises to someone that I didn’t know as if I had all the answers. Thanks for sharing your ongoing thoughts with us.

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  18. What us your diet like? I used to be you. I am not any longer. What changed that? My diet. I do not eat any grain anymore. I minimize any sugar. I avoid dairy. I avoid processed foods What the he’ll do you eat then? Fresh veggies, lean meat that doest feed on grains and fresh veggies. I used to take a ton of meds. Now I don’t take any except for an estrogen patch to give me the female hormones I need since I had a full hysterectomy because doctors believed my hormones were the cause of migraines. Imagine my surprise post op when they continued. If you want to get better- you will change your diet. If you want to stop taking so many meds, change your diet. I was diagnosed with Fibro, chronic fatigue, polycystic ovarian syndrome, diverticulitis, several migraines every month and a list that doesn’t end. I changed my life. Western medicine doctors only treat symptoms and push pharmaceutical agendas. Eastern medicine treats the root cause. Go see an allergist. Get tested for gluten intolerance, histamine intolerance and other sensitivities. I promise it will change your life.

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