East of Eden
I hope by now you've signed my Change.org petition to tell Horizon Blue Cross & Blue Shield of New Jersey to cover the stem cell transplant I need. If not, go. DO IT NOW. Yes, those caps are intentional. I'm yelling. It's been a week and I've got over 500 signatures, but I think we can get 1,000.
Such awesome bloggers/writers like Rod Dreher, Kurt Willems, Mark Shea, Dawn Eden, Binks Webelf, Matt Appling and Matthew Paul Turner among others have already signed... so get to it! A big thank you to everyone who already has and the many who have shared it via Facebook, Twitter, Instagram and email.
I've had a pretty busy week dealing with all this. Last Tuesday, Zoe and I headed over to the local office of Congressman Albio Sires, our districe represenative. Because he falls under the federal category, his office couldn't help with Horizon's denial, but they did file an official inquiry into my Disability case. This aspect of my health drama is one I've never gone into on the blog... at least not much. But recently, I've been asked A LOT about it since I am a sicky. There really hasn't been much to tell, though. I applied for Social Security Disability in April 2012, was denied nine months later, hired a lawyer and appealed again, only to get denied again last spring. My lawyer then filed to have a judge hear the case last June, and I still don't have a court date. So two years on and nada. This isn't unusual- sadly far from it. Quite a lot of us get stuck waiting nationally. Now in my case, I'm blessed to have a husband who works and provides well, so I have never wondered how I would eat or keep a roof over my head. What's painful for me is knowing that Medicare- a program offered to those on disability after two years- covers the cost of the stem cell transplant. I can't Medicare because I can't get Disability because I can't get a court date. So I'm in this slice of purgatory, waiting to move forward, some way, somehow.
I also tweeted Senator Cory Booker, and being the suerhero he is, responded quickly:
And his team is sending me out a bunch of forms so they can look into both Horizon and Disability. SCORE!
After sending an email to my mayor (spoiler alert, I live in Elizabeth... I don't believe I've ever come right out and said that either on here, but if you've been reading my blogs long enough, you could kind of figure that), he personally called me and said he'd send a letter of support to Horizon. I also reached out to one of my former pastors, Carlos Cedeno, who is a councilman here in Elizabeth, and he is sending a letter, too. I'm very appreciative of all this, even if I feel anxious doing it at the same time. You see, I like writing about a story, and hate being the center of it. I'm naturally shy (yeah, I've got a big mouth and am introverted at the same time), so this stepping into the spotlight is not fun.
Moving on, I've been asked about the actual procedure, so allow me to clear up a few trhings right now.
- Where do the stem cells come from in this transplant?
Me. This procedure has nothing to do with embryos, fetuses or abortions. Nada. It actually involves no donor whatsoever. The doctors at Northwestern will pull peripheral stem cells from MY blood. They will then use those cells to create a new immune system for me, and put them back in me. I'm donating to myself. Isn't science grand?
Do you *really* need all this? Really?
No, I don't. I just want to undergo a couple of rounds of chemo and over a month of hospitalization for kicks. Pardon the sarcasm, but this question is pretty stupid. If there was some easier method, I'd do it. In fact, I have been with the steroid, IVIG and plasmapheresis. Unfortunately, they aren't working. They aren't even helping me to maintain. And the consequences- like almost dying- make the current options very unsustainable.
What happens if you stop with all the treatments? Have you tried?
I'd say I'll wind up totally debilitated within months. After I had Zoe, I had a sudden decrease in functionality, a sharp contrast from the improvement I experienced while pregnant. My theory is Z in utero worked as a 24/7 IVIG system naturally boosting my immune system. When she came out, it stopped, and I became very sick within months. I struggled to type, write letters, walk more than a few feet and get out of bed. Yes, that's how bad it got. Even now, I'm not in a good place. Thanks to the blood clots, I went over a month with no treatment. As a result, I've slid again. My balance is off and my coordination is effected. I'm in more pain, especially my legs and back, and it's harder to walk. As much as I wish this all would just go away, and it's not happening.
Have you tried changing your diet?
Yeah, and while I've lost weight, it hasn't helped one bit to relieve the CIDP. I've tried cutting back on dairy (to the point of almost nothing), meat and even wheat (although I'm not gluten sensitive and don't have Celiac- I've been tested) and nothing. I'm sure someone will read this and swear up and down that their cousin's best friend's beautician eliminated all [fill in the blank] and now they're just awesome, but kindly take that elsewhere. I know diet is vitally important, but every person is different and this is the path I'm on. If you don't like it, don't sign the petition.
Why are you like this?
Short? Near-sighted? A woman? Oh, you mean the CIDP. I don't know. I didn't inherit it and no one in my family has it. I never did drugs, smoked, and I'm not a heavy drinker. It's not a STD. I don't know, luck of the draw? The effect of living in a fallen world? Whatever. The point is, I have CIDP and I passed the phase of "But, why me?" in about 2011. It just is, so I'm trying to handle it.
What happens if you don't get the transplant?
I don't know, but I'm running out of options. I have small, poor veins, so IVIG is highly problematic. My nurse of two years, Melissa, gave me up as a patient now that the catheter is out. If my health slumps too much, I may need to go in patient and have a catheter inserted through my groin to have a few rouinds of plasmapheresis done. I hope not, but this can happen. The only other methods beside a steroid cocktail is long term, low dose chemotherapy (yes, it's not just for cancer!). They either artificially pump up the immune system or tear it down. Those are the breaks. Unfortunately, it'll break me and leave me open for massive infecftion and pneumonia. So yeah, the prospects aren't good.
Can I donate?
At this time, I'm not collecting money. I don't see the point. If Horizon approves coverage, then I will for traveling and associated costs. But if they don't, there is no reason to hold out the tin cup. I do not believe for a second that I could collect the $125,000.00 needed for the transplant. If my brother Joe is darn near manhandling coworkers just to get signatures, nah, not many will be trying to go fund me. Sorry. Also, please don't donate to Change.org. That money isn't going to reach me. It's to promote my petition, but honestly, Joe did it and we didn't see a real increase in signatures. It's better if you keep sharing the link and of course, pray.
Again, thanks to everyone who is showing support. I love you all.