The Hope for Hope Sort of Hope (again)

I struggled for days, weeks , with this next entry. Heck, I’m struggling as I type this. I am emotionally conflicted.

I’ve mentioned that my father, God love him, unbeknownst to me,  had gone ahead and organized another fundraiser for me. At first I flat out resisted. I’ll get to why in a minute.

The first few fundraisers were so successful. I made them last through countless treatments and countless trips/ appointments in Philadelphia, oodles of meds, covering all but 3 years. Sadly, though, my own series of unfortunate events, I have found myself right back where I started. I guess I should refresh everyone’s memory and say that I am currently suffering from RSD (reflex sympathetic dystrophy)  I am lucky enough to be treating in Philadelphia with the world’s leading specialist for RSD, Dr Robert Schwartzman. For the past 3 years I have been receiving IV Ketamine Therapy. I have had an initial 10 day treatment, countless 2 day treatments and 2 week long inpatient induced ‘coma’ treatments. I am a candidate for the month-long coma treatment that is not currently available in the USA because IV Ketamine therapy is still considered experimental and not all insurances cover it. I can’t even begin to think about that treatment option yet. The cost is in the hundreds of thousands dollars range. But I have been sooo incredibly lucky. IV Ketamine therapy has changed my life. It put me back in the game. Got me off of my forearm crutches, out of my wheelchair and back to a functioning member of society. And I couldn’t have done it without the help of my amazing community, family and friends.

(more about the K therapy>–>)

I don’t know if the average Joe realizes how incredibly financially devastating having a chronic condition can be for a person, let alone a family. Not only did we lose my (substantial) income, we also lost the terrific benefits I carried through the hospital. We also had to become self insured (which I know many people must also do now in this country). Because of my condition, we paid out the nose for private insurance for over 10 years and because of my pride, I refused to accept government assistance even though I was eligible for medicare for the past 10 years. Can you believe that? I am so vain, so proud that I didn’t want to walk into a doctor’s office and hand them a medicare card because I know that people treat you differently when they ‘think’ that you are “sponging” off of the government. It’s a common misconception. Then one day, that oh so ‘glamorous’ insurance company that my pride made me carry decided to drop me because I maxed them out and I was left with no other choice but to accept what our government offers to me because I have a pre-existing condition” and most private insurances won’t touch me and those that will , will only do so at such a cost that I can’t even think of affording it. I’m sure I’m the only medicare card carrying member who would give the world to have her glamorous private insurance back, because that would mean I’m healthy again. We’re not all “spongers”.

Anyway, I mentioned in a previous entry how a few not so nice people have made things rather uncomfortable for my children and myself since the last round of fundraisers. These select Polly Perfects who do things for the show of it and not from their heart were heard to say things like ” oh, are those new shoes? Didn’t we just have a fundraiser for you like 2 years ago?” (as if one can never again clothe themselves because they once needed help or can’t get dressed despite the fact that I went back to a (very) part time job the minute the treatments began to work just so I *could* or buy things for my family.) The Polly Perfects were relentless. They judged at every turn and every chance. They are the reason for my hesitation.

But I have decided after meeting with Pastor Scott, my father, Mark Miller, Nicole Miller, my cousin Laurie and all the incredible people who have poured their heart and souls into making this happen for myself and my family that these Polly Perfects are people who really don’t matter in my life or the lives of my children. They are people who will never really understand what it feels like to give completely of themselves like I got to do for the Cups of Compassion. Polly Perfects are people who give so that others can *see* them giving. They are the people who do things and wonder what they get back in return. I don’t really need those sort of people in my life anyway. No one does.

So here it is, the flyer… I can’t keep it secret any more. It’s all over town now anyway. My dad really gets around 😉

I know of a few really cool Chinese auction items.. (these are the things I’ve seen so far)

** for my baseball fan friends**~ 4 Season Tickets to the Iron Pigs

** 4 Greens Fee passes to the Berkleigh Country Club

** A “Hope’s Favorite Things” Basket from Salon Lora filled with over $100 of my favorite retail from my generous boss..

From what I understand you can buy a ticket now, and if you can’t make it , the $25 becomes your donation.

But come play bingo,eat some baked goods..  I’d like to see you. ❤

BasketBingoFlyers (1)

Hope for Hope

Basket Bingo


Sun. – November 4, 2012

Alburtis Recreation Center:


DONATION $25.00   (INCLUDES-Hot Dog and Beverage)

SPONSORED BY Trinity’s Helping Hands






Mark Miller 610-721-2923

Trinity Lutheran Church 610-682-7352


Proceeds from this event will be donated to Hope (James) Distasio.

Hope is suffering from Reflex Sympathetic Dystrophy Syndrome (RSD).

RSD is a chronic pain condition that is believed to be the result of dysfunction in the nervous system.

 Currently, there is no cure for RSD.


2 thoughts on “The Hope for Hope Sort of Hope (again)

  1. This will probably be longer than Hope’s entire post – but I hope you’ll read it anyway. I know how Hope feels with all of this, even though I live in Texas. I know what she goes through just to get through the day. I know – because I too have full body CRPS/RSD and I have struggled with not only the “idea of receiving”, but also in “actually receiving.” It’s incredibly humbling, and at times – all too hard. But sometimes, people have no other choice.

    Help is one of the VERY HARDEST things one can ever ask for! I know. I’ve been there. For those that don’t know, I’ve had RSD for about 5yrs longer than Hope. She and I seem to have a lot of “5yrs apart” — in marriage, in kids, and in RSD. My Pastor caught me off guard one day. He found me in the hallway, and asked me if I liked helping people. I said, “Of course!” He then told me that I was robbing people of others SPIRITUAL GIFT OF GIVING. He went on to say that I was also robbing myself of the SPRITUAL GIFT OF RECEIVING. It was a longer talk, but you get the gist. That meeting – changed my life. I learned how hard it is to RECEIVE. It’s the HARDEST thing I think a person ever has to learn.

    This post though, is about Hope. She didn’t respond as well to the same treatments as I did – and that’s one of the hardest things to understand about RSD/CRPS. But, we were privileged to meet via FB (not in person.) It just so happened, when her “miracle” came around she hadn’t anyone to take her for those 10 days. Nor did she have the money, as insurance wasn’t covering ANY of it.

    I, along with another great lady with CRPS just happened to be in good enough shape at that time – to come and help Hope make this miracle come true. WE WANTED TO HELP, and it’s THAT SIMPLE. We both used our own expenses to travel to Philly, and we both got to meet one of the sweetest, loving, caring woman, who deserved this more than anyone we knew. And we were PRIVILEGED to help.

    You see, all she wanted a CHANCE to be active in her children’s lives, as they were growing up fast. She’d never be pain free – nor cured. Not even close! But just the chance to be well enough to put on a smile, be active in and enjoy her children’s lives. To be that Mom, that can get to know her kids’ friends.. to be the Mom that can encourage, celebrate with, and cry with her children.

    I hope, that no one else in Hope’s town EVER has to know what it’s like to have those abilities taken away – and then have them be put in front of you – just out of your grasp – because of this little thing called money. If you’re one that gave with a cheerful heart, THANK YOU from this gal in Texas.

    BUT if you’re one of those that has looked at Hope and her family and judged their new shoes, clothes, or activities as one of ‘your’ financial gifts – STOP! Don’t ever give to anyone or anything EVER AGAIN. Not until you can stop and examine your heart and know what giving FREELY means. If you’ve given, it is not your right to examine what they have or don’t have. Just like any family, they want the best for their kids.

    I know Hope doesn’t deserve your judgement. She deserves your friendship, your prayers, and your love.

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