Monday, May 25, 2009

I Am Alive

[Longer Than Usual Post Due to My Prolonged Absence From Blogging!! Get Yourself A Nice Beverage And Sit Back And Relax. . .]

Hi howdy cyberfriends! LONG time no write for me. First off I apologize, especially to those of you who took the time to send me a personal message and who I didn't respond to. As all of you have guessed correctly my good old friend, illness, has been plaguing me and my household, thus the lack of communication.

When last I wrote, I had mentioned the trouble I was having with my pain medication, or more accurately, with insurance covering my medication. I had been on the same medication and dose for a year and things were going very well, when my Medicare Part D provider decided they would no longer carry the brand name of my medication. Shouldn't be a problem, right? After all, there is a low cost generic alternative. Well my friends, let me let you in on a not too well kept secret (ask your doctor or pharmacist friends and they will confirm this), generics DO NOT have to be as effective as brand name drugs, they have to prove there is no more than a 30% efficacy difference and then they aren't tested again. Plus, the make up of the fillers, etc... is different, and if you have a sensitive system, as most of us with multiple illnesses do, you are talking disaster.

Back in February I started on the generic and began having problems with pain almost right away. My pain management doctor upped the dose to make up for the difference in the brand versus the generic, but by mid March it became clear that wasn't going to work. My doctor had been fighting with the insurance company from the first day to get them to cover the drug I needed, but they kept denying it, so we were forced to switch to another medication. Each switch requires an adjustment by my body and careful monitoring by the doctor. We tried a pain patch in the hopes that I might get some relief from the by now unbearable pain but alas it was not meant to be. As we had been telling the insurance company, I needed the brand medication. I couldn't afford to just buy it, it costs over $900 a month, so I became less and less able to function.

One of the MANY issues was (and to a degree still is) my inability to sit at the computer. At first it was for extended periods, but eventually I couldn't even stand or sit long enough to check e-mails, no less write a blog post or answer someone who had written. I haven't read anyone else's blog posts this entire time, because I couldn't do that either.

In the midst of all this, my mother had to have an emergency gallbladder surgery, and despite my own pain and problems, I had to care for her as well. Life became a constant battle of pain, with me using whatever energy I had to do the things I HAD to do, and no energy or strength left over to do anything else. We tried many doses and combinations of medications, until I was taking medicine every three hours and STILL getting no relief.

My doctor informed me just a little over a week ago that he had FINALLY won an appeal with the insurance company and that they would cover my medication again (until we get to go through the whole process all over again-but I can't go there right now!). Of course by now I am in the "donut hole" and paying 100% of all medication costs. That means until I reach the "catastrophic" co-pay amount I am on my own paying for this costly, but very necessary if I want to function, medication.

You can imagine the stress this has put on my physically and emotionally. I had been ill and trying to get infections cleared to have surgery to deal with another problem. Well, my immune system simply isn't working at all right now due to all my body has been through with pain, medication, switches in medication, etc. . . I am currently battling systemic thrush, a sinus infection and several other fun things.

Last weekend I was finally put back on my original medication (thanks to my mother's credit card, isn't that sad at 42 years of age!). I went through withdrawal as my body tried to adjust to yet another medication and dosage change. Thankfully, I have a wonderful pain management doctor who was available by phone all weekend making changes as necessary to make the adjustment as good as it could be. Still, it wasn't a fun process and the part of all of this that makes me so angry is that all of it is unnecessary. I have chronic pain. I have been treated for it on the same dose of the same medication for awhile and it works for me. It isn't like I have something they can't treat or that doesn't respond. Because I have MANY allergies to medications I have to have certain drugs and not others, sometimes not even their generic "equivalent". My doctor knows this, I know this, but the insurance company simply didn't care. Instead of listening to my doctor about what would be best for me, they chose to put me through hell for over 4 months, to the point where I could no longer function, not to mention the financial and emotional toll, before they finally agreed to "cover" the needed medication.

So for now, I am able sit at the computer again, although still not for long periods. I can see improvement, but thanks to my lovely insurance company I am now on almost double the the dose of medication that I was on, thus a higher cost, because in trying to control the spiralling pain my doctor had to increase the amount of medication he was giving me, and of course my body adjusted to those changes. None of what happened was necessary. None of what happened was fair. None of what happened was right. Am I angry? You bet I am! I had my whole life turned upside down for no good reason. I have suffered unbelievable amounts of pain and been reduced to almost completely bed ridden. No one will pay for it, except me and those who care for me. I have lost friends who couldn't understand why I was no longer able to get together. I struggled to take care of my own mother when she needed me most.

I am grateful that my doctor kept fighting for me, even when he was so frustrated with the insurance company who kept telling him there wasn't a human being he could speak with. I am angry that in less than a year we will be fighting for "approval" yet again. For now I am grateful to be back on something that is Starting to give me some relief and some hope that I might be able to live a somewhat "normal" life by my standards. I still don't know what it is to sleep through the night or to be pain free, but just being able to write this post is a HUGE accomplishment. I have missed all of you so much and have been touched by the messages of support I received, even when I couldn't reach back out to say so or to thank any of you. I don't know who, if anyone, is still reading my blog, but I hope to be posting again somewhat regularly, and I pray some of you have stuck it out with me, knowing how illness is.

Thank you for letting me rant and get my truth out there. Just speaking about it has helped me to release some of it. Thank you for caring about me and for all the prayers, the support and the love.

I hope to write about happier things in my next post. Until then, please know I hold all of you in my heart and I pray for your health and happiness.


Renee said...

Oh Maureen
I cannot believe what you have been through the past 4 months just because of insurance companies and the kind of care we are allowed to have. You have one very special doctor~! What a blessing for you. And your mom's surgery too. So much for you to deal with at once. I have stopped by here a few times wondering what was happening and lifting you up in prayer..
i will continue to lift you up Maureen as your body heals and evens out with the medication, etc.

lost butterfly said...

I just received your post via email and I am so sorry for what the insurance company is doing to you, it is nothing short of criminal and they really should not be allowed to get away with it!
Thank goodness you have a good doc that helps you. While reading your bio, I noticed that we have way too much in common illness-wise. Would you mind sending me an email to and let me know what pain med you use as you state it is working well. (when they don't deny it of course) The reason I ask is I take 8 percocet a day plus 20mg oxycontin twice a day and toradol 3times a day and my pain is still bad most days...just want to try any possible thing that may work.

Thanks and take care,

Shauna said...

Dearest Maureen,

Got your email...oh honey, we are still reading!! I was wondering what happened and am so upset to read what you have been made to go through. Something in our country needs to change, but I have not seen anything that is going to change the **cra* that we have to go through.

Going through withdrawals is one of the most awful things to deal with anyway; not to mention in someone who is already in pain. There is NO reason for you to have to go through things like this.

I pray for you, I think of you, and I am here for you. I want to be here for my online sisters and brothers in pain, to be here when you fall, and to know when you are going to fall....I will try to pick you up.

Gentle Hugs and prayers!!

Kelli said...

I am so sorry you have had such a horrible past few months. You are so fortunate to have such a great pain management doctor.
Sorry to hear about your Mom's surgery. She is so lucky to have you. Take care and good luck.

One Mom said...

So sorry to hear of all your troubles. The treatment shouldn't inflame the illness! Did you by any chance see Tuesday's Today Show segment on generic drugs? Supports all that you were saying. Check out their website for the details and perhaps some support for your situation.

George Brianka said...

Glad you are still alive! xxxooo

ConnieFoggles said...

This is so terrible to read about. I've been worried about you when I didn't see you posting on your blog. Now I can understand why. I hate to hear how your insurance company wrecked havoc on your life. You don't deserve one iota of this.

And your poor Mom! I don't know how you do it....

When you feel up to it, please email me with your contact info. I kept wanting to call you, or send a card but need your info.

Praying and sending my love.

Kerry said...

Maureen, It is sooooooo good to hear from you. Have been worried, and now know for good reason. Oh my gosh what an inhumane lot to go through!

The pain situation is flummoxing...for you to suffer so for have your life turned upside down due to an uncaring, impersonal insurance company is awful. I'm so glad that for right now you are beginning to feel relief again.

And, in the midst of all this your Mom had gall bladder surgery. How you did Maureen, I do not know.

My thoughts and prayers continue to be with you. Wish our cyber friendships could be more hands on in times of need! Made me smile to see "Being Chronically Ill is a Pill" in my mailbox again. Have missed you much. Kerry