“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Tuesday, January 25, 2011

Bumps In The Road

I like this picture, because even though the road is "bumpy," it looks like it's headed in the right direction.

I had my doctor's appointment yesterday.  He agreed to give me a one-month trial.  One month, and if there are any negative side effects, he's pulling the plug immediately.  One month, and he would like me to be very honest in my assessment of my symptoms at that point.  He was careful to make sure I shouldn't get my expectations up.  He emphasized that it was very possible that I will not see any improvement.

I was thrilled.  I feel like his approach is the safest and best I can hope for.  He is exercising every imaginable caution.  He is making sure that my health is top priority, and if he ever feels the risks of taking the medication are too great, he is going to stop the treatment.  I'm OK with that.  I left his office with a priceless piece of paper in my hands -- a prescription for hope.

Priceless?  Well, let me reword that.  It definitely comes with a price tag.  I found out that my insurance doesn't cover the medication, and that it would cost about $1200.  For one month.  I can't say I was surprised; I had already researched the drugs and knew it wouldn't be cheap.

So, I now have two options.  I can upgrade my insurance, which would increase my monthly premium.  I would still have a $750 pharmacy deductible that I would have to pay up front, and then the medication would be $60 a month.  Or, since I have no idea if I'll be able to continue taking the meds longer than a month, I could simply pay out of pocket now and wait and see.  I have an option for getting the medication cheaper, but it would require waiting about three weeks to get it. 

I'm leaning toward a combination of the two.  Pay out of pocket now, and then upgrade my insurance if it looks promising.  Upgrading my insurance is the better option if I add a second medication to my treatment.

Which all led to a meltdown this morning.  Why?  It's not just the financial stress this will place on us.  We've shouldered financial stress before, very successfully, I might add.  No, I can't help but wonder, is it worth it?  Which really means, am I worth it?

Ah, you think with time you overcome your teenage insecurities.  You accomplish things, you achieve things, you catch yourself feeling proud of yourself once in awhile.  And then something like this happens, and the old voices you have spent years silencing rise again to the surface.  The old voices telling me I'm worthless.

But what if I asked my children, "If you could have your mom back for just one day, how much would you pay?"  I think the answer would be more than a thousand dollars.  And if I asked my husband, "If there was the slimmest chance that you could ease your wife's suffering for just one day, how much would you pay?"  I imagine his answer would be close to a million.


Renee said...

Oh, my gosh, Shelli...first of all I must say that those voices you are hearing are also visiting me lately. I just wrote an article for a newsletter I sent out for over 5 yrs b/f my health deteriated... called, "Whose Voice Do You Hear?" because I am so critical of myself and think my writing is bad, etc. etc. All those old voices I thought were tamed came back with a vengence this past month along with some pretty strong feels of being unworthy and discouraged on my journey to wellness.
So, Shelli, your post rocked me....(along with Jo's today).
You are good enough....worthy enough....and you are showing great courage in stepping out unto this new rocky terrain...hopeful for improvement or healing. You go girl! You are on my prayer list.
Your words today have helped another soul to feel lighter, my friend.d

dominique said...

Okay. I am shocked at the cost! Holy Cow! I'm glad that didn't rock you because that would have shaken me to my core! My word.

I don't think I would have thought that I wasn't worth the cost of the medication but that I would have wondered if the cost would be worth it if I didn't get well. I think that would have been the greater struggle for me. But then I don't have a family to take care of.

As far as what Renee said, I agree. You are courageous for stepping out and trying something else. And you have great worth to your family and to us!

Laurel said...

You are SO worth it, Shelli. I'm sorry to hear how expensive it is, but my fingers are crossed you see some benefit from it. And if so, I'm sure the answers will come in terms of finding a way to stay on the drug over time. You are in my thoughts!

Elaine said...


It's like you saw inside my head and heart and wrote about it! I also have been feeling like that- more than "usual".

I understand the stress over the cost of the drugs. It's so hard when we have to make such huge choices... and the cost has to be measured in so many ways.

Praying for you and hoping that whatever way you choose to proceed, that things will fall into place for you. Praying too, that the treatment will help!

You are worth the cost!


Treya said...

That's great news! Hopefully you will get some benefit.

Good luck!!!

I love that photo, the man made road against natures beautiful trees... And what amazing colors they are!!

Stacy said...

Shelli, it is so wonderful that you have a doctor who sounds like a sensible man. That alone is priceless! I think this illness does touch some deep psychic nerves - you seem to have a really healthy, balanced perspective on which buttons it pushes and what to do. Hang in there!

(Hope the move is going well - don't forget to breathe...) (And hang in there some more!)

oerganix said...

You can get a month's supply of Isentress for $650 here:

Viread costs $110/mo.

Buying 2 or 3 months' supply is a little cheaper.

I would remind your wonderful ID doc that the experience of other patients trying ARVs has been that they may not be better in only one month. Some have needed longer, and most have felt worse at first. Also, it is thought that a two drug "cocktail" is better than one, as they work synergistically.

Dr. Jamie Deckoff-Jones, physician with CFS, has joined WPI's clinic effort to educate interested doctors in how to treat patients with ARVs. She has offered to consult with any doc who wants to talk with her. You have her blog listed here: X Rx It contains her email address.

If it were me, I'd encourage my doc to communicate with her and other docs who are in this group project to get the info of research into the hands of docs who are open minded enough to use it.

As long as your blood monitoring labs are OK, he should allow you to try it for at least three months before abandoning the effort.

oerganix said...

Forgot to say: Of course, you are worth it. Everyone who has this disease is worth it, and "everyone" includes you.

My selfish interest in your success is that if you get better with this treatment, it is just a little more "proof" that this is the way to go for all, or many, of us and that might make it become available sooner to those of us who cannot afford it.

Do it for science, if not for yourself, your kids, your husband, your community - even your doctor. If he succeeds with you, think how many others might have an easier time with him. I hope he'll join the ME/CFS "literate" doctors who can make such a big difference in our lives.

If I had had treatment even 10 years ago, my disease might not have progressed to the point it is now. And I'm here to tell, yes, it may plateau for awhile, but eventually it does progress.

Best of luck with whatever you decide to do.

Anonymous said...

I think you are worth upgrading your insurance even without this XMRV medicine thing. It is insurance in YOU. More coverage is a good thing to have. So needed for that "ya never know" factor.

I am praying for the Rx to work for you, Shelli!! Wow, what an exciting experiment. Can't let yourself get your hopes up too high, huh. Who needs any kind of disappointment doing that could bring. I guess it's about hoping for the best and expecting the worst?


Rachel and Pia's Cottage said...

Hope you are doing well on the medication. I was diagnosed with lyme's 2 years ago but need to do a xmrv blood test too. Unfortunately our local hospital doesn't do the test so it needs to be sent out and that means paying for it up front....another 495.00. Many healing blessings to you Shelli. :o)
Fondly, Lori