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.


The Vacationing Sort of Hope


“Fauxtographer” ~ have you heard that one yet? I have .


People are silly.

A couple of years ago I was a candidate for an experimental treatment which my insurance did not cover. At the time, I was using forearm crutches daily and occasionally a wheelchair. The pain from my disease was off the charts. This treatment, IV Ketamine infusions, offered a potential reduction in my symptoms. But it came at a huge cost. When some good friends, family and community heard about my opportunity, they rallied around me and instantly began fundraising for “Hope for Hope”. I felt so blessed. So lucky, So humbled.

I was fortunate enough to have had those events raise enough to carry me through quite a few trips to Philly and back. My husband and I have had to use a pile of savings to cover a few treatments that I’ve had too, all in the hopes of me having some sort of semblance of a “normal ” life. The good news is, it’s working. I haven’t had to walk with assistive devices since I began my treatments. My pain levels are usually tolerable and things are under control for the most part.

Sadly, there are a select few people who “donate” to a cause for show or for the reason of feeling entitled to something or truly, I’m not quite sure why. I was raised to give of yourself even when you have nothing to give. And I have done so at every opportunity. Yet ever since my fundraisers, people have treated myself, my children and family differently. They question what my children wear, where they go, what they do. Same holds true for me.

One precocious young girl said to my daughter in middle school a year or so ago ” Wow, you got new shoes? Didn’t we have to have a fundraiser for your mom like a year ago?”  People comment on the fact that my children play sports. Or the fact that they go out with their friends. They question where “their $20” went. It is very difficult for me at times to bite my tongue.

So when my brother called this past winter offering my children and I an all expense paid vacation to fly out to his wedding in South Dakota over the 4th of July, I was hesitant. Very very hesitant. I knew what was coming. The questions, the snide comments.. the looks. I’m so proud of my baby brother, he does quite well for himself. His now wife is also very successful. The fact that they could fly our entire family out to spend a week with them and house us all was beyond a generous gift and an opportunity I couldn’t pass up for myself and the children.

Our very first family vacation in over 10 years came at a terrible time. It was the peak of Legion Baseball season~My “Summer Love”- The Oley Topton Patriots. My family takes their athletic commitments very seriously. Missing a week would be unprecedented for a Distasio.  And I was truly enamored with this team. They were in the fast lane to a championship I was certain.

Sure enough, the minute I announced that we would be heading west, the comments started. “Oh, you’re going on vacation? How’s that possible”… as if it were anyone else’s business…

Though I was apprehensive, that week in South Dakota turned out to be just what the doctor ordered. I had really never traveled before. I had coffee on the patio with my sisters in the morning and dinner with my parents and the whole extended family in the evenings. It had been years since “the James Gang” was all together! The scenery was breathtaking. The creatures were beyond things I’d seen here in PA. The food and family were everything I’d hoped they would be. I even climbed a rock. Me. “the disabled housewife”.  Who knew?

Why am I sharing all this? Stop and think before you speak , people. If you don’t want to give of yourself, don’t. If you question peoples motives/ genuineness, then don’t be a part of something. No one wants to live their lives feeling like they owe you explanations for every single thing they do, particularly if they are already sick. It’s just added stress they simply don’t need.

My father is in the process of organizing another “Hope for Hope”.  God love him, he did it without even asking me. I initially told him I didn’t want any parts of it. Then our car died….. and in trying to fix/ get a new one I couldn’t even book my next treatment.  Not that it’s any of anyone’s business.

Then someone said to me ” maybe you could use Hope for Hope for a new car.”

I can assure you my funds went for my care and well being.  They are all gone now.

You can stop asking.

People really are silly.