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 Sort of Hope that’s here. Right here, right now.

Sometimes , when you have a chronic condition, you have to make choices on what gets your energy for your hour, your day, your week. There’s been something written about this that’s circled the globe a few times called “The Spoon Theory” ~ I use it when I have to explain to my new friends or even to reiterate to family why I sometimes can’t do more than a certain amount of things in one day. Why sometimes choosing to take a shower and straighten my hair means I can’t drive later that day. Or why driving and running errands means I won’t be cooking later that evening.  I just sometimes run out of spoons. I was afraid today was going to be one of those days. My family often ‘forgets’ that I am sick. Which is fine with me, because I sometimes do, too. And there are many times that I would just like to forget , as well. Though there are many , many times that I wish I *could* just forget.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I had lunch today with my parents and 2 amazing women from Blue Cross. They brought a  giant basket filled with goodies for the Chinese Auction at my upcoming benefit. But more importantly, they brought themselves.

Getting to the lunch was challenge of the day #2. I had already showered (challenge #1)  and skipped the hair straightening because I knew I had to drive. Driving is not easy for me for many reasons. I’ll spare you those. So into the car I go. I am currently driving a 1995 Volvo. It does not have working air conditioning. Understand that I am completely grateful to have a car at all. Having no air is not a big deal for most  healthy people. It is usually just considered an inconvenience. For me it is like asking for trouble. Here comes challenge #2.  Moving air hurts me. And I can’t really expect healthy people to understand that. Wind hurts.Fans hurt.  If you ever had a toothache maybe you can understand. Picture a giant full body exposed tooth. And the wind blowing against it. It’s *kinda* like that. Or an open wound. And not only does the wind from those rolled down windows hurt me, the noise that it makes is beyond painful.( I had mentioned in a previous blog that my nervous system interprets some (most) noises as pain.)My body also does not do well at regulating extreme temperatures so leaving the windows up and just toughing it out is not an option either. I would boil.  But off I went.

By the time I arrived at the restaurant 20 minutes later I was not a  happy girl. I was in pain. Lots of pain. Seeing my parents always helps me to forget that a bit. I’ve got amazing parents. They are kind, generous, loving people. They are still so very in love after 45 years.  My father has been battling severe heart disease since his late 30’s- and my mom , diabetes. They have taught me how to fight. How to be brave. And I know that seeing me sick hurts them. So I smile as hard as I can when I am with them. I don’t ever want to be the cause of more pain for them.

Challenge #3. Chairs. Wood chairs. I shift, shuffle, get up and down an awful lot.

Challenge #4 Temperature of the restaurant. It’s cold in here. I brought a jacket. I’m already wearing a cami and a sweater. ( I couldn’t over dress because of the car….). I also always have soft socks and gloves in my handbag. Don’t worry, they get switched and washed often. Usually when I have to bust the socks out I pray no one can see under the table. After 12 years I’ve gotten less vain about this, but I’m still vain.

Challenge #5 what to eat. My immune system has changed so much since I’ve gotten sick and since I began treatment. I was never really a big meat eater now I am allergic to shellfish and nuts. Plus I have a lot of weird food hang ups. ( that’s a whole other , oddly entertaining blog). My digestive system has been affected by my disease so I have to be really careful with what I eat.

Challenge #6 As we said our good byes outside I heard the telltale whistle of the train. the restaurant was right next to railroad tracks. the noise! the vibrations! I thanked our generous guests and hugged and kissed my parents and got in my car as fast as I possibly could. ( which isn’t really fast).

Challenge #7 Back in the non air conditioned car for Challenge #8 more driving.

REMEDY: Picked Nick up from school and my day got immediately better. My son’s smile can turn my worst day around in a flash. His dimple! I needed it today like a drug addict needs their fix. But he was leaving me .. so it would be only a momentary high.

I need down time every day or I get pretty crabby. And a crabby Hope is not someone you want to know. ( ask my kids). But it didn’t look like I was going to get any today. Not even 15 minutes. I was heading straight to crabbyville -in the fast lane.

Challenge #9/10 back to  the car, back to the drive.

REMEDY:  My Natalia. have you ever met someone who is so effervescent that their mere presence changes the whole essence of a room? That’s my Natalia.

I know she can sense when I am over the edge. I know she can tell when I have reached my limit. She always has this ‘way’ of just being able to push me , to help me make it a little bit further. Today was no exception. We were driving home from dropping Nick off. She found a song she liked, turned up the radio , pushed the sunroof back and stuck her hands out and started dancing them around in the wind. It was just so silly looking . So carefree. So her.

~And with that, I wasn’t thinking about my pain.I was thinking about how lucky I was. How lucky I am.  And there isn’t any other place I’d rather be or any other person I’d rather be.

“You know, it feels good to be alive.”

* I did not write this looking for sympathy. I just want people to be a bit more understanding of others. A bit more tolerant. Just because someone “looks good” doesn’t mean they feel good.

And as I go to hit “publish” on this, I know that there are typos. Grammatical, punctuation and others. But it is late and my eyes aren’t working together any more – another Challenge. Almost forgot about that one.

I have always told my children, you never know what sort of day someone has had until the point that they have met with you. Give them the benefit of the doubt and if they are a bit grumpy , perhaps show them just a little bit more kindness. Kindness is one of the few things that are still free.