The Extended Sort of Hope

I can’t believe it’s actually come to this.

I’ve got to spell things out for people.

Senseless tragedy in the world and people in this small little town have nothing better to do than speculate as to how much I’ve paid for my recent treat to myself.(answer a whole lot less than you can possibly imagine~!) I drive a 20 year old car and people are bent out of shape because I went and did something to make myself feel better. I have some nerve!

I wish I was as curiously involved in one tiny little modicum of other peoples’ lives as much as people seem to be ingrained in the daily happenings of mine. Over what I am wearing, what I am doing, what I’ve purchased recently. ( which is not much, actually).

It’s so odd to me that people think that once they’ve held a fundraiser to assist with your medical bills that it somehow now gives them carte blanche to judge everything and anything that you do for the rest of your life. I swear I don’t understand people. As if I make no other income, only what I gathered at the fundraiser. As if I should never do anything else again.

Hope

I’ve gotten static about the photos I’ve posted. About how much I payed Soul Imagery to take my photos… and not that it’s anyone’s business but I will answer this…I met Kevin in a photography group. I model for him. Kevin is my friend that does photography. I’m very proud of his work and I simply love to play dress up. We work very well together. He has taught me an awful lot.

Soul Imagery Website

Playing dress up affords me a few hours of escaping my reality.Reality with a chronic disease can sometimes really suck. It’s a reality that consists of a disease that is rated higher on the pain scale than any other disease known to man. A reality that consists of intense muscle spasms that render some of my body parts useless from time to time. A reality that makes eating difficult and digestion sometimes near to impossible. A reality that makes it too painful to sleep on my ears or to stay in one position for any length of time. The realities of my disease are too numerous to list and too upsetting for most people to read or comprehend let alone for me to even mention, so I usually don’t. And unless you are my husband, or my family or a very close friend, you won’t hear me complain, either.  But because I go out of my way to look good when I leave this house, people fail to see me as sick. Let alone grasp my reality. Hope

Because I go out of my way to appear as “normal” as possible, people just don’t understand. I honestly think that some people would prefer to see me looking like death, hunched over in wheelchair, swollen, discolored and writhing in pain. To them, then I would actually *be* sick.  They only see the “best” of me because that is all I allow people to see. I don’t allow people to see me at my worst.

I allow people to see me taking photographs at my childrens’ sporting events. I don’t allow people to see me the 2 or 3 days afterward that it takes for me to be able to use my hands again properly. I allow them to see me in photos but I don’t allow them to see what I look like on days I am really sick.

This week I decided I needed a change. I haven’t been feeling my best. So, because I have access to a full compliment of womanly wishes (with wonderful employee rates) where I work part time, ( it’s a hair salon),  I decided I’d see if I could stand extensions. We were afraid they’d hurt or I wouldn’t be able to stand them for long, but it’s been almost a week and so far so good. Except they itch. A lot. So they may end up being short lived. Which is a shame, because I really like them, and I’d love to play dress up while I still have them.

natural light + new hair

I don’t think I will ever stop people from being in my business and I’m not sure why they feel that it’s ok to be so nosy and so judgmental.  Some of my close friends think I should feel flattered that people find me that interesting. I’m not flattered. I feel sad for those nosy judgmental people.  Sad because I can’t imagine what they must be lacking to be so concerned with what others are doing.  Sad because if they are so interested in me, they must lead very boring lives. People like that usually only want to feel superior to you for one reason or another, be it jealousy or be it a quality that you possess that  they can’t seem to cultivate. They will sit on their self made throne and judge you,  but in reality you know that they are only judging you for some inadequacy they have found within themselves.

I simply have no room in my reality for people like that any more.

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 “OoOoh SoOo Far Behind” Sort of Hope

Time flies like an arrow; fruit flies like a banana.”
― Groucho Marx

My days… my afternoons, my nights.. where do they go?

Sometimes I think that they get swallowed up by that mystical force that steals one of the socks from the dryer… ( St Elmo’s Fans?) Sometimes I am certain that they get lost in the time sucker that is facebook or in reading/ viewing this whole new glorious world of word press . I am, however,  fairly certain that a large chunk of my time is sucked into recouping in my lazyboy and most others I am all but positive my minutes are buried under the mountains and mountains of clothes that my children insist upon calling dirty laundry.

But for sure I can guarantee that a large part of my life is spent here… either at a baseball field watching my son do what he loves, or at a soccer game watching my daughter cheer, or editing such events. Sometimes I wonder how many pictures of such said events I *truly* need and people *truly* wish to see but then I see the comments people post, the way the kids post them so proudly and I just keep snapping and editing.. repeating the cycle. Looking for the picture I haven’t yet taken. Or a way to take it a wee bit differently.

My time does indeed fly like an arrow straight through my heart, because no matter how busy I am I try as hard as I can to keep up with my two kids. And no matter how much it hurts or how hard it is, I keep fighting every day because I also know that one day all too soon, they will fly away.

Maybe then I’ll get caught up.

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?  :{ )