Author: REJ

Write Something Today

I started using  a Full Focus Planner, and I put on my daily list to “write something” the last three days in a row. Monday and Tuesday I deferred it to the next day, but today I was determined to get thru my list. A lot has happened since the last time I wrote something.

I had my 22nd heart cath and my biopsy came back with no rejection! All of my labs came back fine and my heart is doing well. The hematologist is still mystified by the bruising I’ve been experiencing for several months. It started before I moved back home and has only gotten worse. They are now looking for genetic forms of anemia. So far I have genetic markers for two, but why would their symptoms show up now and not earlier in my life. For now I’ll just deal with the bruises. They aren’t life threatening in any way, just an annoyance really. Especially when one shows up in an inconvenient place, like my face.

I’m still dancing, only one day a week but it’s a start. I’ve been loving it! Loving it so much that I took the leap and registered for school to get my degree in dance. To get prepared for a heavy schedule of dance classes starting in the fall I hired a personal trainer to get me into shape. So far I’ve been getting my rear end handed to me. I’m taking a Buff Camp five days a week and following a strict meal plan. It’s taken some getting use to, but it’s totally workable. If anything it’s a lot more food than I’m use to eating, but with my increase in activity I need the calories. The next thing I need to start working on is my flexibility and balance. Bother were affected by the lack of mobility while I was sick.

I’ve been trying to get to yoga twice a week. I can’t express how relaxing it’s been and healing. It seems like such a simple thing but it’s been working for me. The challenge is going to be to figure out how to fit weekly yoga with my school schedule, but I’ll cross that bridge when I come to it.

 

The Challenge

The beginning of the year I challenged myself to get my camera out every day and take a photo of something or someone. The purpose was to get reacquainted with my camera that had been sitting for so long like a paper weight, gathering dust. I went 84 straight days of taking photos, some not so bad, most pretty crappy if you ask me, but they were pictures none the less. Unfortunately, being stuck in Salt Lake City recovering from a heart transplant in the middle of Winter doesn’t always spark inspiration. In the Winter, Salt Lake City is shades of grey, and after awhile I became bored and somewhat depressed over the lack of color.

So, I took a break and was able to come home to Wyoming, where there wasn’t much color either, just more snow.

I fell short by seven days of a three month streak by missing the last week of March. April was a wash because I really didn’t feel like picking up my camera. I was and am so overwhelmed at home that the thought of getting  up and finding something to shoot every day felt a little burdensome. I don’t want a hobby I truly love to feel like a burden. The camera came out of the bag this last weekend though, when I went to the dance showcase of one of my former Ballet students. I was able to capture some amazing photos of her thru my tears as I watched her. She most certainly sparked some inspiration in me to pick up my camera more often.

So, here is #85 – “Dear Clarice” featuring an amazing young dancer that I’m proud to say graced some of my Ballet classes when she was younger. She’s so grown up now and blossomed into the amazing dancer I always imagined she’d be.

View the entire Gallery.

Dear Clarice

Enough

I can’t be responsible for other people’s feelings. All I can do is treat the people around me with dignity and respect and not take it personal if they react in a negative way. I’m not the family counselor, mediator, referee, or general go between. I need the people in my life to start acting more like the adults they are and stop relying on me to help save the day, calm things down, or motivate. I’m not oppose to helping, that’s just in my nature. However, I expect people to learn how to do things themselves after awhile and that’s not happening. I know it’s me; I’m allowing it. The challenge is figuring out where the teaching stops and the enabling starts.

There’s a lot on my plate, more than the people around me know. Not that I have kept them in the dark on purpose, but because it’s just a continuation of me being sick for so long. Yes, my Amyloidosis is in remission, and I had a heart transplant that will extend my life, but I’ve really traded one set of problems for another. Before, I was just trying to survive and keep my heart beating a little bit longer. Now, I have to survive the anti-rejection drugs that have awful side effects, not to mention the handful of other medications I take for various things that still aren’t working like they should be, post-transplant.

I’m not myself yet; I’m carrying a sadness that I haven’t been able to shake. I’m frustrated that my house doesn’t feel like home right now. I’m irritated that some of the people around me aren’t doing their part to be full participants in our family and household. I hate feeling like I always have to be the bad guy to get things done. I’m tired of attitude, entitlement, laziness, and most of all feeling like I’m being taken advantage of. I want to live my life with joy, love and gratitude, but I’m finding it hard to keep focused on that when I feel like the energy around me is trying to derail me.

So, ENOUGH already! It’s time to change my approach, I can’t change the people in my life but I can change me. Not sure where to start but I’ll figure it out…

Splenomegaly (aka Enlarged Spleen)

The doctors said the first year after transplant is always the hardest; I’d say that’s an understatement. Don’t get me wrong, I feel better, better than I have in several years. I can walk, climb stairs, do yoga, take dance class, clean my house, drive, and most importantly I can breath. It’s amazing the little things we don’t really think about that we take for granted when we are able bodied and don’t have so many limitations. Just lifting yourself off the toilet can be a struggle when your sick and dying, but just as quickly as life can go to hell in a hand basket it can also turn on a dime.

This first year it can swing up and down. I was thinking everything was going OK until I started having some pain in my abdomen. Today I just couldn’t take it anymore and I called my hematologist, transplant team, and local general doctor. I’m still waiting on blood test results but the ultrasound confirmed an enlarged spleen. I guess you could say this is the down swing.