First, I know what it means to live with Chronic Illness and I know what it means to struggle to work with it as well. I've had to cut my hours at work, my dignity it seems and a lot of other things to stick it out and hold on to this job. It means the difference between us sinking and swimming and hey, I may not be doing the breaststroke but I'm staying afloat.
There are many of us who are drowning, too many. And as I feel helpless to help people, I know I can help one person. I'm constantly floored by the greed and the selfishness that I see around me. It makes me ill. Hell, I lost it today and flipped off a perfect stranger when they attempted to pass me while waiting to turn left. I was waiting for that damn pedestrian to get across the street and I guess I just wasn't going fast enough.
You see, we're in a hurry, we all have places to be, but I'm going to beg you to help me, help someone else. Follow me.
Just a couple of months ago a new group was formed on Daily Kos called Chronic Tonic (Which goes up every Thursday at 4pm pacific! Tonight is the night for those who have expressed interest in the group posting) in order to build a community of fellow kossacks struggling with Chronic Illness. I'm one of those people. I was diagnosed with Fibromyalgia and Rheumatoid Arthritis last year and I have been trying to keep it all together. I even wrote my own diary on how to convey this struggle to those around who don't have to deal with chronic illness.
So what is at issue. One of ours who cannot afford a simple test to help move her along in her personal struggle and treatment of a chronic condition. I got this today...
Today, I just learned that I cannot afford the test that I need to have if I am to qualify for the only treatment that is likely to help me. My doc says I need IViG. It costs about $15,000 - $20,000 per month. I am likely to need it for at least 9 months. Insurance won't cover that unless you have results of a particular EMG test. You have to go to someone with specialized equipment. The doc that does the test doesn't accept insurance (I can understand why) and it's not likely that my insurance would pay for it anyway, because it's being ordered by my neurologist in CT, whom they won't cover, because they say I should be seeing someone in MA. But I wasn't being helped by neurologists in MA and this man came highly recommended.
Anyway, the test costs $2,200. Plus I have to take a trip to NYC. How does a person who hasn't worked in two years afford this? Our health care system sucks.
We've had to pay for so much of my health care along the way, while I've been unable to work, that we are riding on the brink of bankruptcy.
Today's news is very upsetting for me.
UnaSpenser is Allison, and as many of us know, she's been working hard to bring us together as a community to help find jobs, hope and just stick it out. She's responsible for Kossacks Networking For Jobs and Community and she's written plenty about helping fellow kossacks. So hey, isn't it time we helped her?
What do I propose? Well, I will one put my money where my mouth is. I will cough up $22 towards Allison's test. I just need $2,178 more. And if you are all willing to be uber-generous, we can send her to New York as well where she needs to go to get this specialized test. I will iron out the details later, what I want here are pledges from you that you will chip in and how much. If you don't want to do it here, you can email me and I will update with pledges and if we can get a good number of people to donate, I will set up some way to get the money to Allison.
I will not stand by and watch another person suffer because they cannot afford to pay for the treatment they need. I will not allow this lovely woman, with her sufi prayers and her need to fight for everyone else to be left behind because she's gotten ill. We cannot let this happen.
She's got such a big heart, she's been cheering so many others on and now I want to do the same for her. PLEASE.
And some beautiful words of wisdom from Allison herself...
Our First Thanksgiving at the Kossack Social Network
Two weeks old and it's our first Thanksgiving as a social networking community. As I write that and think about the nearly 2,300 users, over 90 groups and too much activity for me to follow, it's hard to believe we're only two weeks old. We are truly blessed.
etherapy had the "just do it" fortitude to respond to a sentiment that trickled through diaries on the here on dKos: "I wish we could...." And now we can. For this we are blessed.
She put the word out and people came over to give it a look see. And stayed. For this we are blessed.
And more came. We are further blessed.
People are connecting in functional ways. Working on a new business idea together. Helping someone in need. Sharing job search ideas. Pointing people to opportunities. For this we are blessed.
The connections go beyond the functional to the soulful. Sharing music, lifting spirits. Yet again, we are blessed.
We have sprung up from a movement in our nation. A Servant Leader has emerged. He encourages us to look to our better angels and rise together rather than tear each other apart. It is a siren call for us all to become servant leaders. A calling we all have but can't always hear. etherapy heard the call and it generated a spark. Energy flowed through her fingers and created a fertile ground. Every new member is a seed and from it emerges the makings of our landscape: trees who provide shelter, shrubs who nourish us and flowers who remind us of divine beauty. In two short weeks, we have sprung with a lushness that I'm reveling in. Visions abound and my heart is full. Two weeks ago this didn't exist. Today we are blessed.
There is a Sufi grace:
O thou the creator of our bodies, hearts and souls
bless all that we receive in thankfulness. Amen.
UPDATE: Allison has not even said she will take the money, so that is why I'm getting pledges only. And there are some concerns about the test itself, etc. That is up to Allison as well. I know for a fact that the doctors she's working with are reputable and that those who raise concerns only mean well. Thanks for everyone who has been so generous, your recs, prayers and donations will be appreciated!
11:45 Am - Total Pledged $22
12:15 Pm - Total Pledged $294
1:00 Pm - Total Pledged $618
Sorry for the delay! I had to rush home for work and greet my woozles! The following total is if people donate and KINship matches at $300!
2:15 Pm - Total Pledged $1,364!!!
3:15 Pm - Total Pledged $1,868!!!
UPDATE - Here is Allison's Paypal account. asnevitt@gmail.com
If you don't want to do that, I will email you her address.
4:15 Pm - Total Pledged $2,285!!!
WE DID IT KOSSACKS! If everyone donates what they say they will we did it. More will get her to New York but I'm sure she's grateful for everything, just as I am. If you can spare it, please give. Thank you so much!
For those who question the cost, etc. please don't donate, it's not necessary. I understand the skepticism, it's completely justified at the same time, I know she has reputable doctors and that she has my complete trust in this matter, I would not post this if I didn't feel that way.