No excuses, well maybe just one!

Although the prognosis for ECD can be a rathering depressing prospect, I'm trying to stay optimistic about being around for quite awhile. Mind you, when I first learned of my diagnosis my husband I did make some preparations with our lawyer and bank, it seemed like the rational thing to do.

But beyond that, I continue to try to grow my business (I can work infrequently, but it's a joy when I can!) , to keep learning, to make plans (although it's like trying to nail jello to a wall at times). I detest being a burden on anyone but the reality is that I can't do many activities that I once could. So, we hired a cleaning lady to come in every two weeks and from time to time I have to pay someone to take care of chores that I can no longer manage. But I try. I really do try to do what I can - cooking, laundry etc. No excuses.

A big crossword fan, I love spending the last half hour of the day doing a puzzle or two. The really hard ones. The ones with the five stars, the ones marked as challenging - I love making my brain work (or more accurately my memory!). I used to persevere until every last square was done, and I'll admit to cheating now and again with a peek to back of the book. Shame on me, but I just couldn't start a new puzzle until the old was done!

Things are different now. If I'm not enjoying the puzzle theme, or just don't feel like finishing - I don't. Move on to the next puzzle (I work from the books with hundreds to choose from), leave squares open and blank. I think I might be driving my husband a little crazy with this, he's a die-hard "finisher"!

But I tell myself, I'm sick - I can do what I want. For only this one little thing. Puzzles. Everything else? Keep plugging away...

One of those days

It's a rainy Saturday, and I could really use a bit of Fizzy Lifting Drink. Just sayin'.

I'm not sad, not discouraged - just indifferent today and I'd welcome a Willy Wonka Magic Ticket to add some excitement to my day. I'm allowed to live in a fantasy world now and again. :-)

Maybe I'll just settle for my mid-day vitamin fix (maybe with a bit of chocolate, because you never know)!

Still waiting

I'd mentioned a couple of posts back that our insurance company had refused coverage for an experimental drug. My husband (not one to give up easily) launched an appeal to have them reconsider their decision. Still a bit fat no despite his rather compelling plea to let me give this a try. They've made it very clear that their company will not fund any treatments for Erdheim Chester Disease since nothing has been proven to help. Same position coming from our government health agency.

My doctor hasn't given up hope, he's approaching the drug company again with results of the research conducted by my medical team, as well as seeking out alternate potential donors. I won't be giving up hope either until he raises the white flag.

It makes me wonder however how anyone who isn't wealthy can invest hope in a new treatment. I realize this isn't the case with all diseases, but it comes back again to not having enough ECD patients to make it worth anyone's while. While I say my prayers for anyone who is ill, I'm wishing extra hard for anyone unlucky enough to be dealt a very rare condition. This certainly has been a learning experience in so many ways.

Speaking of learning, I've found it quite difficult to explain exactly what ECD is to people who've not heard of it - which is basically everybody. I dread going to any practitioner who asks if there have been any changes in my health status since my last appointment. Yesterday I came across a description of Erdheim Chester Disease that is succinct and I believe, fairly clear for the lay person to understand. I think I'm going to take a suggestion from the ECD support group, print this one out and give it to anyone who needs to understand what's happening to my body.

http://www.mayoclinic.org/medical-edge-newspaper-2010/jun-18a.html

Thanks to Dr. Castle at the Mayo Clinic for this posting.

fyi - a couple of small corrections. To my knowledge, there are closer to 300 known cases (a very select club I belong to), and ECD is as yet unclassified. In the future it may be designated a cancer, auto-immune disease (or just as a plain old weird aberration of nature?)

This made my smile just a little wider tonight....

My husband and I were catching up on the events of the day today, when he stopped me (and he rarely interrupts) and said "I just noticed that your face is getting thinner honey, sorry - go on". Those few words elated me more than they ought to have - but really, after having that moonface for almost a year it was music to my ears!

The day started off well enough...

Insurance application denied.

The reason given is that ECD is not on the list of illnesses that Enbrel has been proven to help. I don't know why they had us (and my medical team) jump through hoops to make a case for this drug when all along they knew that they wouldn't approve it.

Maybe this isn't completely rational (and I'll admit that I'm not feeling terribly sensible at this moment) - I'm feeling like a complete stranger has made a decision as to whether my life is worth investing in. They don't care that I have a teenage daughter I haven't finished raising, that I've only been married just a few short years to a man who has brought such happiness and security to my life, and that I'm getting worse as time goes on and desperate for a chance to be in less pain.

I'm a victim of a set of hard and fast rules that don't make allowances for a very rare illness that doesn't have a set treatment plan. No room to bend for something that falls away from the ordinary (not that other serious illnesses are to be taken lightly, just that having more people suffer a particular affliction means a much better opportunity to have outrageously expensive drugs financed).

I need a good cry, and will get ready to look at this with fresh eyes in the morning. But tonight, I need to let myself feel sad.