The Rudolph Sort of Hope

ihaveacoldMy least favorite Christmas gift this year… a cold.

Can’t return it. Can’t exchange it. Can’t re-gift if. ( wouldn’t if I could.) Can’t seem to shake it, either.

When you have a chronic condition like I do, simple little things like the common cold are anything but simple. Plus, we RSD’ers seem to do everything on a grand scale.  With immune systems that are already functioning out of whack , fighting a common cold can really tax our bodies. Sometimes that taxing causes our disease to “flare up” = not so much fun.

Who knows, maybe they’ll let *me* join in some reindeer games !?

( if I’m up to it. )

 

 

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 Vacationing Sort of Hope

 

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

Silly.

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?  :{ )