Thanks to all of you, I was able to go to New York City last week for a critical medical test. I had no idea what to expect, so I'll report about my trip here and give you my update.
Most of all, I want to tell you all how deeply touched I am by your support. I am forever bound to this community in gratitude and appreciation. As it turns out, I learned a lot in NYC and the results of the test will profoundly affect my medical treatment. In fact, without knowing this, my life was at risk.
My prognosis is different now and for that I must thank not only the greater dKos community, but particularly the Kossacks Networking sub-community (which would not exist but for etherapy), the Chronic Tonic group over there, the KINship program and Ellinorianne. I'll explain:
My family sits at the brink of bankruptcy, as I have not been able to work for 2 years now. I live with Late Disseminated Neurologic Lyme Disease. It's a bear. You can read a bit of my story here. The bottom line is that it is killing us financially. One weekly injection costs us $40 per week. A couple of months ago, one of my docs took 21 vials of blood for testing and I was handed a $1,000 bill. The costs continue to mount while I pay for the expensive treatment and I don't get better.
When Community Saves the Day
Recently, I had been told that due to heart palpitations, shortening of breath and worsening neuropathies, I looked like a candidate for something called IViG treatment. I was told it is likely that this is the only hope for repairing some of my damage. This treatment is so enormously expensive, though, that there is no way I can get this treatment without having it approved by the insurance company. To do so required more tests. Including re-doing a test that had been deemed "strange" the first time around. This test would cost $2,200 plus travel to NYC. We simply didn't have that money. We simply don't have any money now.
When I mentioned this on the Chronic Tone support group over at the Kossacks Networking site, Ellinorianne took matters into her own hands and reached out to the entire dKos community to raise the funds. I have to admit, I found it embarrassing. It's extremely uncomfortable to have your vulnerabilities laid wide open for a couple hundred thousand people. As one friend put it, I'm used to being the warrior advocate for others, not the one needing the assistance. I swallowed my pride and ate my humble pie, as you all stepped up and offered me help. In the end, the KINship fund kicked in the amount needed to put the total over the mark.
So, without Daily Kos or without the Kossacks Networking site, or without the Chronic Tonic support group, or without Ellinorianne, or without the KINship fund, I wouldn't have gotten my test and know what I know today. You have all shined a huge light into my life. That's what community is, right? And this is how community has worked here? It's very impressive and I'm proud to be a member. Thank you for enriching my life and helping me at this critical time in my health care.
By the way, the KINship fund is a powerful way for us, as a community, to support one another. They're working on building out a web site for resource sharing, but you can support their work now. Go to PayPal and send money to this email address: kinshipplanning@gmail.com They'll make sure it's directed to a Kossack in Need, like me. Go on. Go over there and give $5, $10, $20.... They've done amazing things. Follow the KINship diaries to learn more.
What We Learned
I went to see Dr. David Younger, Neurologist Extraodinaire. He's the Chief of NeuroMuscular Disease at 3 hospitals in NY. He's also a Senior Investigator for the Neurology Research Foundation. One of his specialties is the administration and interpretation of EMGs (nerve conduction exam.) He is THE man to see if you need a skilled EMG assessment.
Serendipitously, I was very symptomatic when I saw Dr. Younger. (you can kinda tell in the photo) Travel will do that to me. He witnessed heart palpitations, shortness of breath, fogginess, etc. Within minutes, he said the EMG was showing definitive results of a deterioration in my known neuropathies. It was the next piece that was new to me: I now have Dysautonomia - that is a dysfuntioning autonomic nervous system. Think heartbeat, breathing, body temperature regulation, digestion, kidney function....
As he explained it to me, Dysautonomia is a dead give away that my immune system is not functioning properly. It's in overdrive. Likely as a reaction to the severe Lyme infection. It's even possible that if we get my autonomic system functioning better, we may see that I no longer have an active Lyme infection, that it was just my immune system still acting as though I did. He likened it to Southerners who wouldn't stop fighting the Civil War even though the war was declared over.
Dysautonomia explains a lot of my malaise. Apparently, there is no way to stop my symptoms and the continued damage to my nervous system without addressing this. And this why I am today, a case of treatment failure. (Treatment failure rises to 62% for cases that have an 18 month delayed diagnosis. It only gets worse from there. So, if you think you've been bitten by a tick, don't wait for symptoms, take antibiotics right away! If you wait, your treatment failure potential skyrockets.)
Dysautonomia, more than Lyme, is definitive qualifier for IViG treatment. So, though it's horrible news to find out that my heart is in trouble and that my whole system is basically out of whack, it's great news in terms of seeking treatment.
Of course, now I have to go through the process of getting my out of network neurologist to convince my PCP to submit these test results and order the IViG treatment. Wish me luck with that. Still, we're one more step in the direction of recovery. And that's huge. And for that, I have all of you to thank. You have my undying gratitude.
On the Lighter Side
I can't travel alone, so the trip wasn't all grim and dire. My friend, Pam, came along. This is her in front of the convent we stayed at:
The convent is St. Hilda's House of the Community of the Holy Spirit. It's an Episcopalean order. I'm not Episcopalean. I'm not even religious. But this was a great place for me to stay. Mostly because it was quiet and wonderful sensory respite from the intensity of the city. As it turns out, these nuns are also eco-activists. They are in the midst of selling this property and using the funds to build a green convent. You can read about in the New York Times. So, they don't use any chemical cleaning products and everything in the bathrooms is perfume free. We don't know this before we went there, so it was a cool thing to find out.
Right next door to Dr. Younger's office is the Asia Society. With our AAA memberships, we got in for $5. They have loaner wheel chairs and Pam pushed me through the exhibits. I have misgivings of trying to define Asian culture for Americans via the collections of an American couple who were guided by a British collector (I mean, sheesh, shouldn't some from the culture be telling us what is important to know about them?), but, still it was interesting. I happen to love Asian sculpture, so I was well-entertained. I can sit with pieces like this for quite a while:
The big surprise of the trip was that we were staying just 2 blocks from Columbia University where this was being put on while we were there. That's right - Toni Morrison, Angela Davis and Assied Djebar, all in one room. We got tickets for $5 each. Unbelievable. The performances were powerful. The discussion was disappointing (reminded me why I don't like academics), but I did get to speak with Angela Davis at the end. Quite a surprise treat to end my trip with. Something I never would have experienced if it weren't for all of you. So, thank you, thank you, yet again.
Bless all that we receive in thankfulness.