My Philadelphia Freedom is all but mine!

Treatment day is almost here.

Had a terrific day today, all because I am forgetful old lady ;}

Went out for dinner with my girlfriend last night and left my glasses in the restaurant. This is the 2nd time that I have done this now. She told me she is going to get me the ‘chain’ for around my neck to hang my glasses from like the older ladies wear. I’m really *not* that bad, am I? I fear the answer.

Picked up my son and daughter and her BFF to go retrieve said glasses which happened to be at a shopping center also. Provided some entertainment. Nick tried on mens running pants which make a suitable double for “yoga pants for men.” Nick is blessed with a big booty. He is proud of it, as well he should be. Hours of endless pitching went into that thing.

Had a blast with the kids.


Today was also the first day of hunting season in our county, which is why the kids were still off of school. Not sure hunting of what ( I don’t hunt) but looks like these turkeys weren’t taking any chances, caught them running across the road today headed into a nearby field. Or maybe they were just grateful to be around for one more year.

Realized I have been spending far too much time alone and sitting. Needed to shake things up a bit, so when we got home and the girls wanted to play photo shoot,  I knew I couldn’t say no. Though it was far too tempting to do just that and crawl into my chair. I figured it would be at least 2 weeks until I could play again , so off we went to find a spot. Should preface this by saying it is about 30 degrees tops here. The body really want to sit at home, but the brain knows I need to be moving. So move I did.

Natalia was wearing a gown that I wore to 2 proms in 1985 and later lent to my high school best friend to wear to her junior prom in 1986. She isn’t with us any more so the dress means even more to me now.  It was really special for me to see my daughter wear it. I hope Beth would be proud of the work we did today. I still miss her every day.


We were out around the golden hour- magic lighting. It truly was magic. Sadly, upon review, Miss Natalia was not pleased with herself today, but I was. I feel like the love that these two best friends share for each other is so apparent in their photos. Reminds me of the friendship I had with Beth so very many years ago.

If you are lucky enough to have a best friend that you love too, do me a favor and tell them- today.. because you just never know.

Was hoping to have the pics from the photos that I did ‘on the other side of the lens’ to share before I left for my treatment but, sadly, I don’t have them just yet. Should give me something to look forward to when I get back, though!

In the meantime…. as I have come to say~

” I’ll catch you on the flip side of the K” my new Blog Buds.

*\O/* if you are the praying sort, please throw one up for me, if not, your good thoughts are appreciated as well.

Thursday, 7am.




The Sort of Hope Who “Benefit”-ed .

^ A collage I made of some of  favorite moments from my first 10 day Inpatient Ketamine Infusions, April 2010.  As luck would have it, my little (though much bigger) brother was in Philadelphia at the same time on business- got to see him for the first time in yearrrrrrrrrrrrrrs. Didn’t remember it too much sadly 😦  Two AMAZINGLY generous , selfless women ( who also both have RSD!)  Heather and Susie  flew in from their respective states, Rhode Island and Texas at their own expenses to help me through my infusions. Susie took the first week, Heather took the second. My first friend in this life- Scotty also lives in Philly and I got to spend some time with him ! My mom and dad were with me off and on. Mom mostly on, dad mostly off. My sisters stopped in and my family (bottom center) stopped in over Natalia’s sectional weekend which I got to watch via webcam- the gym skyped me in ( got special permission) because I wasn’t allowed to be there during treatment and it broke my heart. I had never missed any of her competitions prior to that.  My husband and my children were not with me during my 10 day. I only saw them that day and again at the end of my infusions. We did skype several times during my treatments when I was lucid enough for conversations. Though Natalia will tell a completely different story.

That first round of infusions was made possible by the kindness of my facebook friends, friends in this incredible community , people from my churches ( old and new ) and yes, even strangers.  The money from those fundraisers carried me through to this year. I turned a few special treatments away. But basically, we made it work. And I am so very grateful.

Hope for Hope basket bingo was held yesterday. I can’t even begin to describe the emotions that go along with being on the receiving end of something like that-a charity event of that magnitude. How do you even begin to thank the people involved in helping to keep you “in the game” for the next year or two ?  for the countless hours of work involved in organizing something like that? The blood, the sweat and yes, the tears. (though  most of the tears were mine!)

To my delight, my event was like a long overdue high school reunion. Most of the people who came out to support me were friends from my high school days, some old friends from church and family of course, and some friends of my parents that I hadn’t seen in quite a number of years. It was like “going home”.

I was overwhelmed with the generosity of local merchants and especially my baseball family, Berkshire Baseball who went above and beyond for myself and my family.

I am still trying to digest it all.

The organizers of my event, Trinity’s Helping Hands, were even generous enough to allow me to save the leftover beverages and non perishables to take to the event that I help out with in a few weeks called “The Cups of Compassion” for the homeless people in the city of Reading ( I blogged about that previously.)

Though I still have mixed feelings about having allowed my father to have spearheaded this for me, I felt a little bit better after remembering something I read rather recently. I shared it as a status on my facebook yesterday. It’s from a book that a friend of mine wrote. His name is Dan Clouser. Dan is the president of Berkshire Baseball and one of the most generous people I have had the good fortune to meet in this lifetime. Mr C is a neat man. He is generally quiet and very unassuming. But his smile and laughter are so contagious.  His book is called ” The Beauty of A Diamond ~ Through the Eyes of a Coach.”  It is a must read for parents, coaches, players, heck, for human beings in general. 

Anyway, it goes something like this ~ “The important thing to understand is that everyone in this world has been helped by someone along the way. No one here can simply go it alone. We may try from time to time, but we all depend on someone along the way. The sooner we all understand that, the world will be a much better place.” ~ Dan Clouser  The Beauty of a Diamond , through the eyes of a coach

Yesterday was a very long day, physically and emotionally. As I (literally) crawled into my bed, I fluffed my pillows and got distracted by a lovely bright red ladybug. I always seem to find them on “special” days….. Or, perhaps, they find me.  ❤

The Sort of Hope Who Gets Flushed

Welcome to November~November happens to be RSD Awareness Month! I kicked off awareness month by getting flushed.


For those new to my blog, I am sick.  For 12 years I have had a disease called RSD. (reflex sympathetic dystrophy). I am currently receiving regular treatments through an amazing Dr in Philadelphia. This treatment requires regular access to my veins. It is kinda/sorta like chemotherapy but only for what I have.  ( I do not have cancer most people associate ports with cancer so I always feel the need to over clarify this. )  RSD is a disease that affects the central nervous system. It changes the way my body works. It is different in almost everyone who develops it. It predominately affects skin, joints, muscles, bones and sometimes impacts the way the internal organs function( like it has with me). It’s most common trait is severe burning pain. Constant relentless burning.

My port is to make my life just a little easier. A little less painful. My port requires routine maintenance to keep it functioning properly. The maintenance of this port is referred to as a “flush”. It always makes me giggle.  (what it’s called, certainly not the flushing itself, as it involves the insertion of a needle and as far as I am concerned, that is *never* funny.) I go to the Infusion Suite at the local hospital since they have been kind enough to save me the 55 miles that I normally travel to my doctor  just for this literally 2 minute procedure. The nurses and staff at the Infusion Suite are probably some of the greatest , kindest people I have ever had the pleasure to deal with. I always feel badly about taking them away from the very sick people there and they never make me feel like the inconvenience I go there feeling like. My Dr and  I decided I needed a port because my veins kept blowing. Also because IV’s are painful and every time a person with RSD gets a stick somewhere, it is a possibility that their condition can spread or at the very least, cause the condition to flare up. Getting a port was probably one of the best decisions I have made for my own healthcare to date. I had my port inserted right before my first 7 day inpatient Ketamine Coma over 2 years ago which was another great move because I wasn’t really awake to feel any post surgical pain until over a week later.

Most of the time I forget I even have a port. Until I see it. Or feel it. Or bump it. My daughter is somewhat fascinated by my port. She is one of the only ones who seems to ‘like’ to touch it. She likes to feel the “straw” that is inserted up into the main artery into my neck. She’s an odd child.

My port is not without it’s own issues, though. Somehow, out of all the port insertions, in all the operating rooms, mine falls a little short. Literally. Because of that, it has trouble giving returns. The “straw” ( catheter) that is supposed to go into the main part of my heart is just a fraction too short. So while it works to give me my treatments, ( put things into me) it doesn’t often work for blood return, as the catheter sometimes randomly floats between the main ( big) vein              ( artery? ) vein, (I think) and the smaller one right next to it. I can’t really think about it or it freaks me out. Something is randomly floating inside my heart. Ya, cool.

I had a port buddy. His name was Kerry. He used to tease me that his “3rd nipple” was better than mine because it had more holes. ( he had a fancier sort of port). Sadly, the world lost him a few months ago after his valiant fight with cancer. We used to talk about being sick together all the time. He was one of the few people who I ever actually truly talked about being sick with. We discussed how we hated it, our constant struggles, how we hated what it did to our families and how much fighting we did with ourselves. He truly “got it” . I miss him. He was feisty. I loved that about him.

I both love and hate my port. It has saved me countless sticks. But when I do see it, or bump it, it serves as a reminder that I am not who I once was, I am now RSD Hope. And RSD Hope has to get flushed.

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>–>)http://rsdfoundation.org/en/abcnewsdr.schmartman1.html

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.

All sorts of Hope for this gal, Hope

The view from my favorite Philadelphia hotel where I stay for my outpatient treatments. Cell phone shot


RSD/CRPS (Reflex Sympathetic Dystrophy- Chronic Regional Pain Syndrome) is a chronic pain condition which affects the central nervous system affecting skin, joints, muscles, bones and sometimes impacting other organs. It is a disease of the sympathetic nervous system now being classified under the ‘autoimmune disorder’ category. It’s common symptoms may include various degrees of burning pain in the skin and muscles, fatigue, extreme sensitivity to touch, trouble keeping food down, constant urge to urinate, headaches, blurry vision, trouble with motor skills, dizziness.  (to name a few). RSD is considered a progressive disease. It is also considered the most painful form of chronic pain that exists today.

RSD written as Causalgia ranks highest on pain scale

Anyone can develop RSD/CRPS it starts from what they call a noxious event ( relatively minor-or could be major), damage to a nerve or soft tissue that for some reason doesn’t follow the normal healing path. Those reasons are still being researched. Speculations include genetics, immune deficiencies, and vitamin deficiencies.
This is my RSD Story:

I suppose my RSD story begins much like everyone else’s. “It was a lovely fall day…” , a Saturday, September 29, 2000 . We had recently moved into our new split level. We had just bought our business, and I had only been working in Human Resources for The Reading Hospital and Medical Center for a little over a year , working approx 45-50 hrs a week and teaching Sunday School. (the hospital was my dream job, by the way!). Nick was 4 and Natalia 2. I like to think that I was the modern day Super Woman.

I had the children out to visit my parents and they had fallen asleep in the car. Trying not to wake them up, I carried them each in separately. Nick first, layed him on the sofa, he woke up. “Shh!” I said. “I am going back out for your sister!” Once I got Natalia in the house, Nick began to cry, so I hurried down the steps ( my first mistake). Talia woke up and I rushed- missed but one step and tumbled! I tried to break her fall – “down went Frazier!” I caught her but missed me. “Get me something cold!” I yelled to 4 yr old Nick. He ran to the fridge and brought me a beer!! ( always the comedian!) . I instructed him to get me the phone as I knew there was no way I could stand up. Now I had a crying 2 yr old, a crying 4 yr old and a crying me!

By the time I was x-rayed my foot had doubled in size. I had never broken a bone but I knew this wasn’t good. I left the ER with only an ace wrap and crutches, a diagnosis of a List- Franc fracture and instructions to find a good Ortho on Monday. ( I worked for the Hospital.. how hard could that be?)

I actually returned to work Monday, but was in extreme pain , it was a little hard to keep my foot elevated under my desk, especially while conducting interviews. Found a good Ortho. A week after my original break , I was a tad shaky one morning on the crutches ( I was Non-weight bearing) and I fell down another 5 steps clear-even managed to take out a door! They finally put me in a Bledsoe boot but was still non- weight bearing. I was unable to be cast due to the extreme swelling in my foot, thus the removable cast. I stayed in that darn cast for 6 months. As holidays came and went my co-workers joked about decorating my boot to match each holiday. Pumpkins and skeletons for Halloween, lights at Christmas.. well, you get the picture.

I was sort of “one of the lucky RSD ones” as immediately when my cast came off my Ortho casually said to me… “ You have RSD”.. I said, OK, well, we fix that, I’m good to go, right? He said it so casually, like, “you have a hang nail”. I remember going back to my office and telling my partners in HR and our workers comp gal, Cindy, started shaking her head. OH NO HOPEY… we pulled it up on the net, but back then there wasn’t much to read. (this was 12 years ago, mind you).They let me go home right away, I was a mess for days. To me, it was a death sentence. But my husband, ever the optimist, swore we would get RSD and it would not get us.

I went to about 5 different docs trying to get someone to tell me I DIDN’T have RSD.
I went to PT for 6 months. After that , I found out my foot still wasn’t fused. For whatever reason, my bones just wouldn’t heal. Got a referral to Hershey Medical Center and, met an amazing Orthopedic Surgeon- Dr Julianno. He “put humpty dumpty back together again” He did a TMT fusion and fused my foot then sent me back to PT. I treated at Hershey for about a year, had another round of blocks, meds, PT/OT, you name it.

But my story doesn’t end there. SORRY. – about 5 years later, I was out around Memorial Day and noticed EXTREME sensitivity, and a sudden bulge around my scars.
An MRI and Cat Scan later, it was discovered that my pins had “backed out”! Who knew? Apparently this can happen in like one in one gazillion people. So back to Hershey we go ( on my birthday) for a re-fusion, which further aggravated my RSD.

My RSD has continued to spread to this day. There are times when I can’t stand certain clothes.(um, like a bra!! LOL) I cannot tolerate wind, cold. Dental work is a nightmare. Loud noises and vibrations are horrific. Sometimes even eating is not pleasant! (how sad is that!!) RSD disrupts my sleep so sometimes I sleep for about 2-3 hours a night. There hasn’t been a day in almost 12 years that I don’t know pain. Certain parts of my body will swell without warning or change temperature from other parts.  My feet(hands, fingers, etc) can be severely warmer or colder than each other or any other body parts. My body has trouble regulating my breathing, my heart rate. My vision has become compromised. (and as a hopeful photographer, this has become very hard for me to accept).

I originally managed my RSD by trying to eat right ( I try to follow the RSD Diet from http://www.artzoo.com,) trying to exercise when I could. I quit smoking. I stayed as active as possible. I took a host of meds ( much to my dismay). I’ve done massage therapy and Chiropractic Care. I’d gone Holistic for a while, but always gave up. I have a TENS Unit, and I swim when I can. And my best therapy- my family/friends.

In 2009 I was blessed with an opportunity (after a 2 year wait time) to meet with the “world’s leading specialist” in my disease, Dr Robert Schwartzman. He confirmed my diagnosis of then full body / internal RSD.  I began some rigorous testing for an experimental/ controversial treatment – IV Ketamine therapy. I passed all the testing confirming that I was both ‘bad enough” to need the treatment and strong enough to withstand the grueling side effects that it could impart.  Every time a test would come back as being passed,  I would have champagne glasses filled with gingerale waiting for my family when they arrived home. Ketamine was going to be my chance at a new life.  I prayed I would no longer need to hide at home, or use my forearm crutches/ wheel chair daily. Ketamine was supposed to reduce my pain levels enough so that I could tolerate the other “issues” that my disease causes.

I celebrate April 16th 2010 as my “KAnniversary” . It is the day that I got a chance to live life a little bit more pain free again.

I began my first 10 day inpatient IV Ketamine infusion. I have since had 2 inpatient coma therapies and countless outpatient treatments. They have sustained my quality of life for now. RSD has been both a blessing and curse. I have learned some pretty amazing things about myself and my family. I never knew that I could be this strong and I never knew that they could be, either!

Through this all, though, I have been blessed with the most amazing support system. My parents and siblings have been some of my strongest advocates and supporters. My extended family has always “been there” to lend a hand when I need one. I have children who all but completely understand, who know what a “bad day” is, and who have learned to see people for who they are and not what they are, who now know compassion and empathy. I have been blessed with friends who don’t judge, and for that I am grateful. I have been blessed with a husband who is not above laundry and vacuuming or dishes. And I have found an online network of support (my facebook pals!) like no other I have ever known, and for that, I am eternally grateful.

(this blog entry also exists on my blog as a page, but no one seemed to be able to find it as a page?  :{ )