Monday, June 29, 2009

The Ugly Truth

Again so much time has passed without my posting. The truth is that I feel so down I just haven't done it. There, I admitted what we (the chronically ill person) are NEVER supposed to admit, I am down. All of the past few months events have left me not only physically worse for the wear, but also emotionally and spiritually spent. It is really scary for me, I am not someone who gets down and stays there, I'm more of a "okay the pity party is now officially over, let's get up and do something constructive" type. The truth is I have absolutely no idea what to do.

My medication is not being covered again, so I am trying to find $1200 a month to pay for something I have to have to function, while the insurance company and my doctor duke it out. I have absolutely no control over the outcome, which is terrifying. In the meantime, I am also in the wonderful Medicare Part D "donut hole" so NONE of prescriptions are covered at all. This will continue until I pay $5500 out of pocket (oh did I mention I DON'T HAVE IT!). I HAVE to take most of my medications, for instance without my hydrocortisone my adrenals don't function. Not taking my medication isn't an option for me. Again, I have little or no control over this.

Each day seems to bring another health issue (no big shock considering what I am going through) which adds to the already enormous stress level. I am bone tired, dealing with all the physical issues, which range from systemic thrush, to a shoulder in need of surgery, to immune system issues to fevers is enough without the constant money problems, the fights with the insurance company and the never ending trips to the doctors. I want a day off. I want to not worry for 24 hours. I want someone else to slay the dragons for the day. It won't happen, but I can still wish for it, can't I?

So my posts have been few and far between. At least when I have the medication I can actually sit at the computer, without it I cannot for the pain is unbelievable in this position otherwise.

Most of my doctors are pretty good, but we have a health care system were each doctor is so specialized that they only focus on their particular area of expertise. I wish I had a good internist who pulled it all together and saw how one thing is affecting the other, but I don't, and despite many attempts to find one, I simply haven't been able to. I can't even get angry at the doctors, the system itself is so broken that they do all they can. The truth is that chronic illness isn't handled well in our country. We are a deal with it after the fact nation. We don't do prevention well. We don't take the time to study the effects of one issue on another.

Those of you with chronic illness will understand what I mean, and, I hope, those of you without may learn something new from my perspective. In the meantime, I will keep putting one foot in front of the other and praying for better days ahead. It's all I can do in the end, the rest is in God's hands.


Jeannette said...

Just read your latest post and first you need (((((((HUGS))))))) You poor soul, but if it helps at all... I understand exactly where you are coming from. So much so that I almost could have written your post word for word with a couple small changes. Sad isn't it?

I do hope that some healthy folks come by to read once and a while and learn something from what those with chronic illness go through. That they should cherish their health...Just the simple things in life become challenging.

I truly with I could do something to help you, really I do. But I am in the same boat. At the very least I hope you can draw some comfort in knowing that others understand what you are going through and care.

Take care sweetie-hope things settle soon for you.


Daisy said...

I wish there was something I could do to help. I can only offer a virtual {{{hug}}}.

ConnieFoggles said...

Honey, you keep on doing what you can. Your health is the most important thing. I know how much you love blogging, but soon you'll get back into the swing of things. Praying for you.

Kelli said...

I am so sorry you are having such a difficult time. Our medical system certainly is broken. Things shouldn't be so difficult for those of us who live with illness or disablity.
Hang in there.

Alicia said...

Maureen ... Oh, how I feel for you !!! I think ALL of us with chronic illness have thought or spoken many of your phrases at one time or another: "I am down." "I have absolutely no idea what to do." "I have little or no control over this." "I want a day off." The helplessness over our circumstances can be overwhelming. And it's all the worse when you factor in financial hardship. All I kept thinking while I was reading your post was how I've been extremely fortunate to have the means to try EVERY treatment suggested to me over the last 20 months for my chronic dizziness, & even so, I'm far from "healed." So I feel for you tremendously when you've found some treatments that are effective & you are struggling to afford them. I admire your attempts to keep your chin up despite everything you're currently battling & I truly hope that you reach a financial resolution soon so you can worry about what's really important, your health. My thoughts & prayers are with you ... Alicia

Renee said...

I am so sorry to hear all you have been going through. I don't even know what to say, except that you are in my prayers. May our Lord bring you peace, healing, and great strength. I hope soon the meds will be covered and you can move forward. It is so terrible what insurance co. get away with.
Please know I am thinking of you.

The McCurry Project said...

I found your blog from another blog and got caught up reading the same fight I have dealt with. Medicare part D dounut hole. I will tr=ell you what myself and my mom and the other ladies I do thereputic swimming with have been doing to so called beat the system.

My mom and I first started it and have 7 or 8 different ladies a nurse and even Doctors asking for the link we use to get our meds.

I recently told my pain management and he totally understand why I have resorted to what I have.

I get my meds from Canada. It is crazy they do not take as long to have generics instead of brand names and you contact through the web fax your script and it does take a bit longer to get your medicine but it keeps from debating will you pay your light bill or get your medicine.

Hopefolly you know someone on line that lives in Canada that can give you a link to a drugstore.

THey don't however ship narcotics but the more pricey meds are totally not a problem. I choose my more expensive meds to get all year for Canada to not go against what I have toward the medicare dounut.

I will more than gladly share the link I use but with just contacting you through the web I am not sure if you would be comfortable with that.

But you can find me I have a blog and I am on facebook
Monica Ball

Anonymous said...

Thank you for writing this post. I can identify with most of it--the meds, money, pain, etc and most of all *we're not supposed to talk about it." Exactly. One of my sisters is a nurse & she refuses to discuss/listen to any mention of me "not feeling well." So we talk about her. And the fact I sometimes use Vicodin for pain is somehow the worst thing she can think of. Well, she doesn't have interstitial cystitis, fibromyalgia or CFS. Hmm...I think if she spent a day & (sleepless) night in my body those 3 Vicodin a day might look pretty good to her!
Am really tired of having to defend being sick to friends & family, tired of their disappointment when I have to cancel plans & am met with stony, disapproving silence. Because I really don't *look* sick--well, I do but they are either ignoring it or somehow don't notice. Grr...I think ranting is good for the stress levels! Hang in there. Glad to find your blog.

Anonymous said...

Thanks for your kids words on my post the other day. I would love to take you up on your "cyber" hug. While I don't live with chronical illness, I live with chronic infertility that has left me in a similar emotional state. I'm glad you are helping to reach out to others and sharing your story. It has certainly enlightened me. I won't give you an trite condolances or tell you that "everything happens for a reason". I will only say, "I'm sincerely sorry for the hand you were dealt with in life". I wish you days of peace of healing.

Jeanne said...


Thinking of you!!!!

I hope you are OK.


Sara Elizabeth said...

I am sorry to hear that you are so down. I was wondering why there wasn't an update in a while. My Mom has fibromyalgia, so I sort of understand chronic pain. I hope things look up for you soon.