365 Challenge #15 Confusing

I promised myself that this year I would try to learn as many new things as I could.

To push my brain to it’s limits.

RSD patients can be found to have  damage to the same parts of their brains as stroke victims or Alzheimer patients. Part of my testing for my ketamine infusions made me all to aware of just how far my condition has messed with my brain. Part of the very reason that we have RSD at all is because the wiring in our brains has some how gotten all messed up and the pain signals have become confused somewhere along the way. Thereby making the simplest little tasks sometimes very challenging.

This little project took me almost 3 hours. Interrupted by making dinner, but three hours nonetheless. I was so confused while I was trying to do it. But I did it. And my brain held up. Now I’m just exhausted. It’s not perfect nor exactly how I really wanted it, which was the hardest part for me- allowing myself to say something was finished before I considered it “perfect.”  Nonetheless, I was so proud of myself when I finished it. Though it was very difficult for me to complete this task, very confusing, I did it!  Just don’t ask me to do it again 😉

 

– PS- I should get “bonus points” – because this photo is of my teenage daughter and though she is beautiful and I love her, teenage girls are nothing if not confusing!!

 

Day #15 Confusing

Confusing

The Jolly Sort of Hope pt 1.

Ever since I started dating my husband, the last Sunday before Christmas was always one of my favorite days. His mom and step father host a party that is filled with family and food and children. Santa even comes to personally give all the little children their “early drop-offs.” Everyone gets a chance to sit on Santa’s lap and tell him what they wish for and/or have their photo taken. For as long as I have been married ( 16years) there has never ever been a shortage of small children in this family. They are the joy of Christmas for me. How wonderful it must feel to be able to host such an event! Sadly this year, for the first time in my life with my husband, I couldn’t even make it to the end of the night. Thank you RSD.

Normally we arrive way before everyone else and stay way past everyone else. It’s time we don’t often get to spend with some of the people at the party. Plus I always felt like I needed to help my MIL as much as I or my family could that day. It’s a huge undertaking for one person. But I’m sure worth every moment once you see the smiles on the children’s faces as they see Santa come down the stairs. Last year I positioned myself perfectly to take pictures of just that. The little children as Santa arrived. Sheer Christmas magic!!

This year I photographed the event with my broken 18-105mm lens. The focus doesn’t always focus and the zoom doesn’t always zoom.  Challenging at best. Like many of my mentors, I don’t shoot with flash. Indoor lighting and I are not the best of friends. That being said, I’m not too terribly disappointed with the results. It can sometimes be like a mini press conference when the children hop on Santa’s lap. But I did get most of the kids as they sat on the guy in the red suit’s lap. Some didn’t stay long enough for my fickle lens. Some did. Some families looked at other people who said “say Cheese” and  sadly you can’t go back and get a do-over.

So as my BFF has been heard to say to her 2 boys ” you get what you get and you don’t get upset.” ~ In any event, I hope no one get’s upset. My in law’s Christmas party never fails to help make me jolly. Holidays are about families and love.

Merry (after) Christmas!

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.