Sunday, September 14, 2008

There is something I need to ask you about

I don't know how to phrase this, well because, I don't know what to do. This is a topic I don't like talking about and a weakness I don't want to admit to. I don't know how to do this on my own and, though I hate to say it, I need help.

Lyme has ruined my life and I am told I should feel angry. I should be angry at the doctors who failed to diagnose me, who ignored my for years while I got sicker. But I can't feel angry at them. They didn't know any better. Maybe I should be angry at the system that trained them. Lyme disease is so new and unresearched, how can the doctors be trained to deal with it when there is so little data out there? A general practitioner couldn't be expected to deal with this sort of thing, but specialists are few and far between. I should be angry at the medical system that refuses to grant me access to the medicine and care I need? The system is working under the idea that resources are limited (which they always are when it comes to health care) and they base their analysis on an antiquated idea that two weeks of antibiotics is sufficient for most bacterial infections. Everyone is doing the best they can with what they've got. It's not good enough to help me but I can't find it in my heart to be angry with them.

But I am sad. I cannot receive the treatment I need here in British Columbia so I must turn to my southern neighbours and receive treatment from a specialist in Seattle. Now, I trust this specialist's assessment of my situation and I trust the recommended treatment. I feel that if I could follow this course of treatment for the recommended period of time (2 to 4 years), I will be well enough to be a productive member of society. I just can't afford to do it.

I did some math. Out of pocket expenses for my health so far total more than $12,000. That's my entire savings along with donations from family members who really can't afford to make donations. That amount was just to get me to a diagnosis. The cost of treatment is considerably more.

Let us pretend that I could afford the basic treatment plan. This involves antibiotics, probiotics, IV nutritionals with Vit C, other herbal and nutritional products, regular visits to the specialist every two months, and a few other necessities. This is by no means the super lovely or deluxe package. With the basic package I would in theory be better in just over two years (give or take 6 months). I would still have to be careful in order to avoid remission of symptoms but I would be well enough to work again.

Going by current costs the price for this basic treatment is $3360.35 per month until the end of the year or when I begin to show improvement, then it will reduce to $2930.00 per month. Assume I'll need this until new years 2011 and we have a total cost of $83,761.40.

This does not include things like food, clothing, shelter, paying off my student loan (which starts next fall), or even bus fare. This is just Lyme related medical expenses and is exactly 80 thousand dollars more than I have. The illness makes me so I can't work. On a very good day I have 4 hours of energy but most days I'm lucky to be active for 20 minutes. About the only thing I have the energy to do is to write, but I don't know how to turn that into money and don't have the energy to learn. This will improve with treatment, I'm told, but it will be at least two years before I can hold down a regular job although it's unlikely I will ever be able to work in a public space again because of my chemical sensitivities.

I have enough money for two months of treatment. That's not basic treatment either, this is bare minimum treatment. After that, well... I don't know.

So what do I do? This is the part where I start to cry because I feel so hopeless. I need money to get well and I need to be well to earn money.

Do I ask for charity. A friend suggested that perhaps someone close to me could run a fundraiser or at the very least that I put a 'please donate' paypal button on my blog. I don't know if I'm proud, stubborn or stupid but the idea of asking for help, especially asking for money, makes me feel wrong inside. I feel wrong to accept something that I haven't earned. I don't like bothering people. I don't like feeling weak. I don't like asking for help when it comes to things that really matter.

But this really matters. I don't know how to do this on my own.


Nat said...

-There isn't enough information out there on Lyme and its diagnosis and treatment.
-You have a lot of friends and readers who are crafters/writers/makers.
-You said you aren't too tired to write a bit.

Can we (readers) collaboratively write a book? Volunteer makers will create crafts to be sold for a Lyme foundation. The proceeds will help fund the treatment so you can write about the experience and observations over the two year course of the treatment. At some point we can find a publisher to give the foundation an advance on the book. You wouldn't be asking for personal favors because you'd be contributing to general research on the disease.

Maybe that's a bit out there. I'm going to keep thinking about the problem. Hang in there. <3

Carrie K said...

I don't know about "should" be angry, it's either how you feel or not. (At the time) You're ill and you have to deal with things you never anticipated. It sucks. You can't get help without asking for it, but there's always a chance you won't get the help you do ask for. All I know for sure it that life keeps trucking on no matter what and it's better to do what you can.

Is that just preachily unhelpful? I find it impossible to to state with any clarity how I feel. Gah.

Josiane said...

I've been thinking about it for a while, strongly suspecting that even having enough to cover your living expenses was certainly a struggle considering the situation. Now with the treatment costs on top of that... (by the way, I think it's terrible that the treatment can't be covered by our medicare system)
I hope I'll be able to help in a way or another. I have a few ideas in mind, but none really screams "eureka!" - it may be because it's late and my mind isn't working very well... anyways, I'll keep thinking, and I'll let you know what comes out of my brainstorming.
In any case, if there's anything I can do to help, please let me know.

marydotmusic said...

There have been trust funds set up in the past. There was a lyme disease rally back in May. Perhaps you can talk to the support group and get ideas on how to make this financially easier for you. I found this name if you haven't already gotten the informtion: Sue Aldous, Victoria Lyme Support Group, (250) 655-6335