Life hurts

This week has been long. Life just feels we haven’t had enough I guess. It’s not like we aren’t trying to move forward, it’s just every time we seem to get footing there seems to be something to try and slip us up right around the corner.

We got the foreclosure paperwork today. We’re trying to get it fixed, and trying to get an adjustment or anything we can to keep our house. Just waiting on the bank to process and make a decision. The only reason we were able to keep it this long was due to Save the Dream Ohio, and though I’m getting VA disability, it isn’t enough to pay all our bills and still eat. Let alone all the testing they have us paying out of pocket for, and insurance wont reimburse us. On top of all of that, her antibiotics still aren’t being covered by insurance, and that’s another $200 per month that is vital we get. I make just under $2k per month, and as many times as I’ve tried to get some side work here and there, and sell blood whenever I get the chance, but we’re scraping by at best.

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The rest of this month, we are broke. I can’t take Savayah to daycare, meaning she needs to go to all of Bella’s appointments with us. Hopefully she doesn’t get sick, but knowing hospitals it may be inevitable. We re-applied for food stamps finally, and until we can get them all the receipts from all the tests and when we paid for them, I guess I make too much money for our family to get assistance. I’m unable to go to school right now, because if I fail or have to withdraw from anymore classes I’ll end up owing money to the VA, and we have enough we can’t afford already.

Other than all the financial stress, Bella has been in severe pain, pretty constantly for the past month, probably longer. Mostly her head and chest are the worst of the pain. The body aches are getting worse, and it’s painful for her to stand or move most of the time. Not quite the same as before, since before standing or moving would hurt because it caused her heart to race and head to ache worse, and now those already hurt but now so do her joints and muscles. According to the blood work we did, she’s fine. Nothing can explain it other than the testing we paid for showing she’s got multiple active infections, all of which wreak havoc on her body and immune system.

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Those are what we’re making a game plan for. Most of the medicine will be out of pocket, and for the best/quickest results we have to not only pay for the 6 or 7 perscription medicines, but also quite a few natural remedies and detoxing. It has to be one step at a time since every new med will hurt Bella more. Everything we kill off that’s hurting her, also releases toxins into her body as they die, which we need to kick her detoxing up as best we can to minimize the damage. While we’re doing all of that, and adding new meds as we’re able, more and more keeps flaring.

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We just can’t seem to keep up, and even with the positive testing most doctors are hesitant to help, and others just wont. It’s hard having proof after all this time, and still not getting the help she needs due to policy. Most of the tests we got back positive have already popped up positive in the past, but were brushed off. We’ve been told for years that it’s not Lyme, it’s not this, not that… How many times have we been right, and told we were wrong? Why must we go through and tell the doctors what’s wrong, what we think/know it is, and told we’re wrong because we didn’t go to medical school? How many times have we proven doctors wrong? At this point it’s innumerable. They tell us they believe she’s in pain, they know it’s not in her head, they’ve tried to get her to the NIH because they couldn’t figure it out, and it was what we said we thought it was all along, but getting treatment is near impossible in Ohio.

Sorry I’m a bit down while writing this; all because I’m just physically and emotionally drained. Bella is put through enough for all of us as is, and on top of that we’re all beaten and torn. More and more just keeps coming up. We’re left to our own vices when it comes to her treatment, and the more we prove it seems like the less they’re willing to help. I hate how our healthcare system seems to be only trying to treat the symptoms rather than attacking the source. It’s getting to be too much for us, and we’re running thin as it is. Let alone getting people to understand what it’s like is nearly impossible.

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Not my comic, but it explains quite well why most people can’t or wont understand how sick she actually is. Why most people don’t see us ever. Why those who do see Bella every once in a while think she’s better or getting much better. Those days she’s still likely in more pain than imaginable, but she fakes a smile to pretend it’s all OK. So she can feel normal even if it’s not real. People see her one day, and don’t see the next week or two just recovering from the hour or two she was able to get out. She even had to put her neck brace back on to help alleviate the pressure at the base of her skull, for two days.

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Anyways, we’re still asking for anyone who can to donate. It’s hell, and I’m doing my best, but failing hard. If she didn’t need so much constant care, it’d be easier for me to goto work and be able to do it all, but until she gets a bit better it’s near impossible. Please share far and wide as well, because someone somewhere might be able to help, or offer some advice on how we might be able to make insurance cover the meds, maybe even a new way of treatment that is cheaper and proven to work. We’re basically grasping at straws hoping that one might be the final one to break through and get her better… We’re just hurting. I don’t know how we’re going to make it.

Again sorry for the depressing tone, but I’m running out of ideas, and without help I don’t know what or how to make it through. However I thank you for reading, and please share, follow, like, donate or whatever you may be able to do. I promise we’ll be eternally grateful, and will make it up to everyone if we ever win the lottery.

With love,

Brett, Bella, Savayah, and Jack

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7 thoughts on “Life hurts

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  1. You forgot savayahs doctor ALSO ordered her $1200 in tests like mine as she could have all of what I have from birth that bortenella mimics autism…
    Annd someone a lab tech CANCELED all my tests ordered ny Cleveland clinic doctors to RECONFIRM for the millionth time these postive tests.. they said they fired her but cant fix my cancelled tests.. so..

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  2. Has she been tested for POTS?

    Thanks for sticking with her. From experience I can say the only thing worse than living like this is having your spouse dismantle you and leave you with nothing but the cruel gift of still being technically alive.

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    1. POTS was actually one of the first guesses to why she was feeling so sick and her heart rate so fast. Down the road we realized that it wasn’t the main cause since her symptoms didn’t only occur upon moving, or sitting/standing, as well as being completely asymptomatic at times; though scarce, and with a few other things means yes she has POTS but it isn’t the main problem. As symptoms progressed and got worse, so did the POTS like symptoms, however with the tests we got done it’s pointing directly at Lyme and related co-infections. Thank you though.

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  3. Please consider trying LDN it’s extremely effective for pain. Look on the LDN research trust or watch the LDN videos on Vimeo.
    It’s also fantastic for autoimmune diseases

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      1. Her functional med doctor told us to hold off on starting LDN because she has too many infections. Adding in LDN with the amount of toxins in her body would hurt more than help. It will be used a little down the line once we’re able to effectively treat her Lyme and Co-infections.

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