Category: The Healing

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…

Apprehensive

After having so many health issues over the last 6+ years I’ve become a bit apprehensive when it comes to seeking out medical treatment when maybe I should. Right now I’m sitting here, no doubt, in denial, that the pain I’ve had in my upper left abdomen will go away if I ignore it long enough. The fact is, it’s getting worse and starting to radiate toward the right side of my abdomen and around to my back. I’d like to tell myself it’s just a pulled muscle or something, but I know it’s not. Who knows what it is, all I know is the thought of having to go to my local hospital scares me to death.

Out here in Wyoming our medical options are limited, not to mention my issues are way above the pay grade of the doctors around here, and I really don’t want to make a trip to Utah to see my transplant team right now.

What I’d like is to have a single day where I’m pain free. Fighting Amyloidosis and then getting a heart transplant doesn’t come without a little discomfort, but my pain threshold is starting to wane. With that my mood isn’t the greatest and is probably bordering on depression. I feel like I need a break…

To Dance

7 Months Post Transplant!

I can’t even express how amazing it was to be in a dance class this weekend. It’s hard to believe that it’s been just about seven months since my heart transplant and I’m able to do things I haven’t been able to do in more years than I care to count. I can’t thank Wyoming Dance Arts enough for offering an adult class and Aaron Wood for being a wonderful and thoughtful instructor. I’m counting the days until Saturday so I can do it again! Meanwhile I have yoga on Monday and Wednesday; I just need to keep moving and working on my flexibility. More than ever I know what I need to do…DANCE, and dancing is going to help me heal.

My Scale is Evil!

I’m having a minor disagreement with my scale, it says I weigh more than I want to. It’s a problem a lot of women have, I just have it for a different reason. With congestive heart failure comes water retention and I fought that battle for several years. Now with a new heart the battle continues. Not to the same degree, but it lingers just a bit, enough to make me hate stepping on the scale every morning.

For all intents and purposes I’m “dry” according to the doctors, however the scale would argue otherwise. I don’t eat enough to maintain this weight; my medication knocks out my appetite. And the food I do eat is healthy, so, I’m not eating a gallon of Rocky Road every night. Unfortunately, a touch of anemia has left me a little tired the last several weeks and I haven’t been getting as much exercise as I’d like. Regardless, I’m tired of the extra pounds and would love for them to disappear.

There really isn’t anything that can be done about it right now. I’m still on that vile drug, Prednisone, and it causes your mind and body to behave in the most strange ways. Among a variety of awful side effects, “changes in the way fat is distributed in the body” is one of them. Now if the fat could be distributed to my rear end maybe I wouldn’t complain so much! I know my weight isn’t permanent, it’s just uncomfortable.

There’s a possibility I may own only one size of jeans in the future, but for now I’ll keep a variety of sizes just in case.

22 Weeks and Counting

It’s been 22 weeks since my transplant and in some ways it feels like a long time ago and in others, not so long. With any luck I’ll be able to go home to Wyoming next month, but that’s assuming they can tweak my medication properly and my next heart biopsy comes back with no rejection. The one thing I’ve learned about the transplant team here at University of Utah is that they are extremely conservative; I’d be shocked to hear they let anyone go home before the six month mark.

To say I was getting bored or was lonely would be an understatement. There is only so much you can do in 680 square feet. Of course I can go out, I’m not sequestered to my apartment, but going out by myself isn’t a whole lot of fun. I really just want to go home. I wouldn’t be lonely there and it’s never boring at home. My husband is bringing my dog for the last few weeks I’m here. We didn’t bring him earlier because I had to be healthy enough to take him outside every few hours. I’m up for it now, but wouldn’t have been a month ago. Having him here will help a lot when I’m by myself and my husband is back home working.

My next heart cath is the 26th of March and assuming I still have no rejection and my labs look OK we should be talking about when I can go back to Wyoming! I feel great, tired sometimes, but otherwise significantly better than I have in about four or five years. In addition to the transplant going well, my Amyloidosis seems to be staying at bay for now. My light chains…the kappa free light chains and lambda free light chains…are at an all time low. Those are the little proteins my bone marrow can over produce that cause lots of problems. April 13th of this year will be four years of remission; not bad after getting a 6 to 18 month prognosis to start off with.

Beyond remembering when all my kids were born and married, plus my husband’s birthday and our anniversary (which I’ve historically gotten mixed up!) I have my own birthday, plus my stem cell transplant date (April 13, 2015) and the date of my heart transplant (October 8, 2018). It’s all too much to remember, maybe I should get some of these dates tattooed on my body just in case…LOL!