I met with Hospice for the first time today. Now don't get too worked up; Hospice is NOT what it used to be. When the Hospice movement first began, a patient needed to have a diagnosis with 6 months or less to live. Since that time the field of palliative care has expanded dramatically and Hospice care is offered much earlier. Hospice employees are working hard to get people in sooner, so it seemed to be a good time for me. I met with an intake person who sent me on to a grief counselor. And before I get too far into this, I saw my doctor yesterday - he is very pleased that Fentanyl is working so well for me but unhappy with my weight loss (10 more lbs, bringing the total to 68 lbs.) So I'm going to work on EATING more. Otherwise everything was pretty good for me. I now weigh the same as both of my daughters (give or take 5) - too bad they don't live closer so we could share clothes. JUST KIDDING.
The counselor gave me a few excellent handouts and I want to include excerpts that really spoke to me. First this from The Chronic Illness Experience by Cheri Register:
There is a spectrum between the two choices of perfectly healthy and hopelessly ill. For example,
"You can tough it out, ignoring symptoms at the risk of getting worse, or you can trust one doctor's judgment at the risk of selecting unwisely."
"You can keep your ailment secret at the risk of deception, or you can talk openly about it at the risk of self-pity."
"You can ask friends for help at the risk of becoming a burden, or you can hold fast to your independence at the risk of isolation."
"You can strain your body to its limit at the risk of harming yourself, or you can play it safe at the risk of becoming an invalid."
"You can be angry about your fate at the risk of bitterness or you can focus only on your blessings, at the risk of self-delusion."
Wow wow wow!
Then, and interview with Elvira Aletta, a clinical psychologist who also suffers from a chronic illness, who has 5 rules for living:
1. Be confident you have the right doctor.(I am 100% good on this one)
2. Define your circle of support carefully. People may surprise you! Peripheral friends may step up and be terrific support while others you thought you could count on cave. (I have truly had this experience and it is absolutely shocking when I think back to who my "friends" were before my illness and take stock of my current friendships).
3. Protect your health as you would a small child. When you see those yellow lights blinking, its time to stop, assess and make changes.
4. Create a new measuring stick. Our self-esteem lies in the standards in which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and re-think your standards.
5. Have dreams and strive for them! Keep having goals for living, both big and small. (I have found it imperative to have things to look forward to. I can't survive without it!)
I can tell this is going to be helpful for me. These handouts seemed to be speaking directly to me, so it's obvious that Hospice counselors know what they are doing.
Oh, and another thing: the services are free. 100% free. Finally, a dose of justice!
Ooh, this is going to be good. I'll keep you posted!
