Wednesday, October 2, 2013


I had a total of 2.5 hours of sleep last night. I couldn't fall asleep until at least 12:30 and then woke up again at 3. Luckily I know never to listen to the committee in my head in the middle of the night.

I've received a lot of emails expressing concern so I wanted to write a quick update. I'd like to say I'm feeling great and optimistic but I'm still in a struggle although I'm doing a little better today.

I'm a fighter, resourceful, and determined. Those qualities existed before I got sick and are still there.

I  want to thank a group of people on facebook. I've been part of a small closed fb group of women for the past few years. They have circled around me and I am resting in their support, wisdom, and comfort. They don't pathologize me but they get it. I think everyone in the 25% group of M.E. gets it.

I can't begin to express the depth of gratitude I have for these women. Last night from 3 a.m. onward I read and reread their comments to me (and emails) over and over for comfort. I don't know what I would have done had they not stepped up.

The simple act of hearing someone else say "I've been there and I made it through, somehow" has been helpful. One person who I need to thank privately wrote a great list of things to consider before I took any action. Some got my attention.

Hearing people say "I've been there" and "we want you to talk about it and are here for you" AND that they actually care for me has been helpful.

If anyone is at a loss as to what to say when someone is in a dangerous place take notice (I understand, I want to hear your pain, and I care).  

One person brought up the fact that birthdays, anniversaries, and the like can trigger things. I want my birthday to be over with.  I've been looking at deals to just get out of town for a night or two. Not that I can afford it but the alternative isn't appealing.

But most of all, I do not want pity/obligatory visits on my birthday. I'd rather be alone.

I would have blogged yesterday but I couldn't because things got worse. I have Medicare Part D which is government sponsored drug plan (for lack of better words).

I'm on a lot of medications and need to be on all of them so I don't return to being bedbound. Believe me I've tried reducing, stopping antivirals and antibiotics but start going backwards.

One of my biggest fears has been reaching what's called the coverage gap.

Each month the plan that you signed up for provides a statement letting one know which stage you are in. I think Medicare pays for meds (except for copays) up until about $1700 (best guess). There are 3 stages: Initial coverage which pays up to about $1700 worth of medications (I think).

Once I reach that stage I go into what's called the coverage gap which means that no medications are covered. Everything becomes out of pocket for the next $4000 (I officially do not like republicans-sorry if that offends anyone but they are the reason Medicare keeps getting cut, the fuckers).

I received my statement Monday evening. I've used up over $1100 as of August 31. I will hit the coverage gap this month meaning I'll have to pay for all of my meds out of pocket which is impossible for me.

So I'm starting the process of choosing what meds I most desperately need and will only pay for those.

Yesterday was an intense day as I sat with this new information. Crap. How the hell do  I decide which meds to stop until January?

When I look at my list its the expensive ones I need. Lamictal is the most expensive but its also the only antidepressant I can tolerate at this point (it's used off label for treatment resistant depression). Stopping that would not be a good thing. Valtrex and Famvir are the next most expensive. I've tried many times to stop them and its non negotiable. I've said many times that becoming bedbound again is my line in the sand.  I will not do it.

Flexeril I need for muscle spasms and there are withdrawals when stopping. Can't stop Clonazepam because of dangerous withdrawals.

The antibiotics will have to go but that's the only thing I can cut out. I need the blood pressure medication but I think that will need to go also.

What makes me most nervous is that this is going to take place during my normally most worst months physically (and emotionally).

I can get one more month of Valtrex and maybe a month with Famvir and then its done so I'm having my freakout.

My back is in bad shape. I've also been having leg weakness in both legs that I thought was toxin related but its not so I emailed the neurosurgeon letting him know what's going on.  The reason I know its not toxin related is because I notice the weakness every time I bend over to pick something up.

I ran out of Advil yesterday but was unable to go to the store to get more. Today I was able to but it flared up the pain.

I'll write an email to my M.E. doctor tomorrow asking about any alternatives.

My mind hasn't been in the greatest shape and I lost the key to the mailbox. I'll probably get the silent treatment for awhile but that's the least of my problems right now.

Basically I'm fighting with everything I have left.  And I have support. And I have therapy tomorrow if my back will let me.

Thank you to everyone for your thoughts and prayers.  Pardon grammatical errors and typos.


Cusp said...

God you're in a tough place :( Being in the U.K. we don't have quite the same problems re. access to drugs because of the NHS. On the other hand, many of the drugs you take are just not available to us.

Still here, still listening x

Alex Cook said...

Me too. Still here, still listening.

Can't imagine having to choose which of the critically important meds I have to drop. The NHS has it's problems but the drugs bill is my Dr's problem not mine.

I hope you make it to therapy ok.

Sue Jackson said...

Glad to hear that you are feeling just a little bit better and that the support is helping. We really do all care for you!!

I can't imagine the meds challenges. We have very good insurance and are able to pay our portion (both thanks to my husband's job). Every spare cent each year goes to medical expenses - it's tight, but I am so grateful that we are able to do it at all.

Like you, choosing to give up any meds would be difficult - they are what keep me upright!

Hang in there - we are all here for you anytime you need to talk (or vent).


Live with CFS

Anonymous said...

Hi Terri

I know nothing about the Medicare stuff but a quick google leads me to ask - do you qualify for the Extra Help?

Levels 3 and 4 seems income and asset related. I'm sure you know more about this than me but just in case.

Cannot imagine having to face the situation you find yourself in.

Rachel G