Category: The Misc…

VOICES of Amyloidosis

This is an awesome project! I didn’t participate because at the time I was dealing with the whole heart transplant thing and was pretty sick. But if you want to see what the face of Amyloidosis looks like watch these videos. They aren’t long but their full of amazing information and stories.

VOICES of Amyloidosis Part 1 of 5

VOICES of Amyloidosis Part 2 of 5

VOICES of Amyloidosis Part 3 of 5

VOICES of Amyloidosis Part 4 of 5

In a Funk

I don’t know if it’s the weather and the lack of sunlight, the medication, or just being alone, but I’ve been in a funk for the last three days. I don’t feel hopeless, or depressed, etc. I just feel BLAH, like I just don’t feel like getting out of bed. I’ve gotten up to shower, I have gone out when I have to, eaten when I’ve been hungry, and all that normal stuff, but my emotions just feel flat. Maybe I’m just anxious to get home to Casper. My six months post transplant is coming so fast and I can’t wait to be back home. January is coming to an end, February is a short month, all I have to do is get thru March and I’m home free.

Physically I feel amazing! I can’t remember the last time I felt this good. After being sick for so long you forget what you’re old normal use to feel like. If I didn’t get any better from today forward I would be OK with that. The idea that my body could feel better than it does in this moment seems nothing short of miraculous. Which begs the question, why am I feeling so BLAH? I should be happy, joyous, ecstatic, that in just 15 and a half weeks I’m feeling this amazing after a heart transplant. Humble, grateful, thankful, are also some things I should be feeling, but right now I just feel sad for my donor and her family; she was so young! And maybe right now I’m feeling a little unworthy of this gift. What did I do to deserve this second chance?

Healing from a heart transplant is more than just your body healing from a massive surgery, but also your mind wrapping itself around the idea that another human being has to lose their life  in order for yours to be saved. Conceptually, I wrapped my brain around it before the transplant, but when it actually happened, everything I thought I got right in my head doesn’t seem so right anymore. I want to live, but at the cost of another life? I know she was gone already, how I’m not sure, and I know she wanted to donate her organs. I pray God has an amazing plan for her in eternal life and I pray I will make her proud of the life I will live given the second chance she gave me. Right now I just weep for her, put my hand on my chest, and thank her for this heart!

Tomorrow will be better…

Seven Deadly Sins

If you don’t know what the Seven Deadly Sins are here’s a list for you:

  • Lust
  • Gluttony
  • Greed
  • Sloth
  • Wrath
  • Envy
  • Pride

Pride has also been referred to as Vanity, and vanity is my sin. I think we can embody all the sins in one way or another, but I think that there is one that we all identify with the most and for me that would be vanity. If it weren’t, I wouldn’t care about my weight, doing my hair before I leave the house, and my favorite store wouldn’t be Ulta. The funny thing is, I never considered myself to be vain, but the older I get the more I think I am. And with all the changes to my body since the transplant it’s become even more obvious that vanity is most certainly my thing.

The prednisone face with the bullfrog neck is driving me insane; my computer facial recognition doesn’t even know who I am! But I know it’s not permanent. I won’t be on this dose of steroids for much longer and my face will go back to normal. Really in the grand scheme of prednisone side effects having a swollen face is the least of them. Thankfully the others I’ve been able to manage as my body’s gotten use to the medication. I have to admit though; some days I feel like a walking bobble-head.

I never thought…

I’d be 46 years old and getting braces 😀

It’s true, this time next week I’ll be sporting some clear dental braces. Like traditional metal braces these are simply clear and all that’s really visible is the wire that runs threw them; unless you get real close they aren’t easy to see.

My mouth is a cautionary tale of phobias, poor dental work, neglect, and smoking!

I didn’t see a dentist for the first time until I was 18. Unfortunately, due to an extremely barbaric and cruel dental visit my mother had as a child, she was petrified of dentists. So, as kids we were just told to brush our teeth and that was it. I don’t blame my mom at all, I’m sure there are thousands of people of her generation that share the same phobia of dentists because of similar experiences. She was a small child, in the hands of a bad dentist!

Luckily not seeing a dentist the first 18 years of my life wasn’t as tragic as it could have been. The sad thing is, that due to some very poor dental work by, count them, three dentists, in three different states, I lost two teeth because of improper root canals. Then I had two teeth (side by side) literally sliver up into the root that had to be pulled…I was eating a Pringle, beware!

One permanent bridge later, some serious jaw wasting, and years of smoking, I’m now in the position I’m in now. The two teeth I broke eating the Pringle can’t be fixed with anything but implants, but I need a bone graft first. I can’t have a bone graft while I’m on a heart transplant list so those will have to wait. The last one which was a bad root canal then an extraction has so much jaw bone wasting and has such a large gap, I can’t have a bridge. I need to straighten my teeth first to try and close the gap enough I can have a  long term temporary bridge. After I have a heart transplant and have healed, I can have bone grafts to fix the areas with wasting and have implants put in.

The upside is that I’ve managed to remove years of smoke stain from my teeth with some good old over the counter methods. I’ve whitened them enough the dentist doesn’t think I need to go any farther with it. And, in the end (about 18 months) I’ll have straight teeth for the first time in my life.

I feel like a fool that I didn’t do this years ago, but when you have children, they come first and mom is further down the list of priorities. I have a wonderful dentist now who is very competent and I trust. He recommended I do this about 8 years ago, but I still have teenagers in the house. Who could afford braces when the monkeys needed new shoes every three months because they grew like weeds. Oh well, so be it. It’s being handled now, maybe a little late, but better than never. I’d like to keep the teeth I have left for as long as possible!

My advice to you…brush often, floss frequently, and find a good dentist; it’s worth it! Oh, and don’t eat Pringles!

A Craving

I’ve told this story to a few people so forgive me if you’re hearing this for a second time.

When I was first diagnosed with Amyloidosis and I started my first four rounds of chemo therapy I had a craving come over me that was so strong I was often time left in tears. What did I crave?

Babies…

There was something about the smell of a newborn baby, the new life, the endless possibilities that lay before them. There’s an energy they give off in the early months that’s intoxicating and I believe can be healing. Not healing of the body but healing of the mind, well, for me it would have been, I think. I recall telling my husband about it and wondered out loud if I could only go to the nursery at the hospital and sit in a rocking chair and hold a newborn for a little while. Feeling that if I could just do that once or twice I could find some calm in my storm.

I never did get to hold a baby during that time. I had some friends who had a baby in that time span but they weren’t allowing people to hold their child in the first few months. I recall going to their home to see the baby and drop off a gift. I asked to hold her and was told I couldn’t. Selfishly I cried for a week over the rejection. If they only knew what just a few minutes would have meant to me, would they have let me hold her?

Regardless that time has passed and my craving still kicks in sometimes. But now I do have that opportunity to hold a little one now and then. Just last night I got a chance to indulge my craving by holding a little bundle while her mother ate dinner. She was so warm and squishy, and smelled heavenly. As I suspected it would, my spirits were raised as I sat, so grateful to her mother for allowing me to hold her child.

Even today I’m experiencing the residual baby high I got last night and I’m not sure if I know how to explain the feelings I have. I don’t know if I am in the end stages of my life or not. If I get a heart transplant then the answer would be no, but if I don’t the answer would be yes. So when that little voice in the back of my head is telling me to soak up what I can because it may be my last opportunity the craving to be around new life comes over me.

It’s ridiculous to think that by some sort of spiritual osmosis in holding a baby I can impart some wisdom they might come to realize when they’re older. I know that’s a silly thought and not possible, but if it were? When I passed I wouldn’t really be gone, a piece of me would be with every one of the babies I had the pleasure to love and hold close to my heart. Like I said it’s just silliness on my part…

I’ve had the opportunity to do that with my own children. I held them close and soaked up all the new baby energy. I remember how sweet each of them smelled after they were born. Now in their adulthood I can see that I was a good mother, a good steward of their lives, and I raised three amazing human beings. When I’m gone I will live on in them and live on even more in their children. I truly hope I’m here to see their children, my grandchildren, but if I’m not, I will most certainly be with them all in spirit.

I’m going to ride this baby high all day. I have an amazing dinner planned for my family and today I’m feeling fabulous!