Author: REJ

It’s Starting to Make More Sense

I always wondered why the divorce rate among people with spouses who were ill was higher than average, but it’s becoming more and more apparent why. Especially after I yelled at my husband last night, telling him I thought I wanted a divorce so I could just be alone. If I’m going to feel lonely all the time I might as well be alone, right? At the time it made sense in my head, but now I feel like a fool for even speaking those words, or any of the subsequent words that were meant to hurt him. This is all seems so unreal, painful, undignified, and just plain cruel that sometimes the emotions associated with all of those things happening at the same time spill over on to the people around me. which brings me right back to thinking I should be alone so I can’t hurt anyone else in my life.

I’m not doing my sons any good; half the time they don’t seem to want to have a whole lot to do with me (I can’t blame them), and don’t get my started on the two daughter in-laws who I’m sure think I’m totally crazy, and want little to nothing to do with me if they can help it. I regret so much and I simply can’t go back and change anything, and I’m not given any leniency for being terminally ill. I think that’s the part that hurts the most. It doesn’t matter that I’ve been sick for nearly six years, that I have a terminal blood disease or need a new heart. I’m still held to the same standard as I would be if I were perfectly healthy, and I just can’t live up to those standards. So, I’m always a failure in one way or another to one, two, three, or all of them…

This all sounds like a huge pity party, and maybe it is, I don’t really care. I’m alone, I’m lonely, I’ve made attempts to make friends, I’ve gone to church, I’ve tried to socialize, I try to stay in contact with people and not just drop off the face of the earth. But I can tell you none of that has helped me make a single friend or find a single person who will come to my home and visit with me when I need someone or I can’t get out. I pray for God to give me patience, understanding, wisdom, peace, and so far I’m still struggling with all those things with no hope of figuring out how to get closer to any of them.

So, it makes sense why people just throw in the towel of their marriage and say they can’t do it anymore. Being the caregiver has to suck, especially when you never know when you’re going to do or say the wrong thing. And being the sick person is like a slow a torture that you can do nothing to make end. You know I often ask myself what I did to deserve all this…

Another Mayo Visit In The Books

Actually it will be our 11th visit to Mayo Clinic in Rochester Minnesota since September of 2014. Ironically nine of those trips have been between 4/2016 and 6/2018, so that averages out to a visit every 2.888888 months. If you drove, it’s about 825 miles, one way, and if you never had to stop for gas or a potty break you could make the trip in about 12 hours; I think the fastest we ever made it was 15 hours. To fly is a little easier, but in order for it to be affordable you have to fly from CPR to DEN to MSP, then rent a car and drive an hour and 20 minutes south to get to Rochester. One might say…Why fly out of Casper, drive down to Denver and then fly directly into Rochester, surely that would have to be easier and cheaper? <insert evil laugh here> NOT! Oh if it were as easy as you thought. Here’s how it would go…assuming there is no traffic, it would take approximately four hours to drive about 280 miles to DEN, then your flight itinerary would go something like this, DEN to SLC to MSP to RST, and the cost of your ticket would be no less, but you’d have serious parking fees at DEN when you got back, don’t forget about the toll, and you might need some gas along the way.

Thinking about all that makes my head spin, but there is something to be said about being able to fly back home, grab your checked bags within 15 minutes of deplaning, and being home within 30 minutes of landing.

All of that being said we have our 11th trip in the books. I’m not sure if it was a good visit yet, because I’m not 100% sure my transplant team has finally realized they have been trying to cram a square peg in a round hole, but I have hope that this time around we got our point across.

Why am I a square peg? Well, for those of you who know me, it’s not for any of the reasons you may be assuming…LOL! I have a rare blood disorder call Primary Cardiac Amyloidosis, also know as Immunoglobulin Light Chain Amyloidosis (AL) with Cardiac Involvement, that has been successfully been in remission, as of today, 38 months and 22 days. Because of the rare blood disorder I also have a rare problem with my heart called Restrictive Cardiomyopathy in my left atrium. Basically the left atrium of my heart is thick and stiff so it doesn’t squeeze and release like it should.

Neither one of these things are addressed by UNOS, the governing body by which all organs are allocated. If my heart was failing due to a more common means I may be in a different situation, but for right now I need my transplant team to understand what their up against. The good news is that in the Fall, we hope, UNOS is rolling out a new set of listing criteria that addresses both my Amyloidosis and the Restrictive Cardiomyopathy which would put me in a position of getting a heart much sooner. The last hurdle is convincing Mayo Clinic in Phoenix to take a chance on an Amyloid patient. The transplant list is much shorter and the donor pool is much larger, so with my blood group, O, which is the most common, my wait time would be less than in Rochester.

Oh and I can never get away from that place without them tweaking my drugs…UGH…thankfully there hasn’t been any bad reactions to the change, so far…

Hopefully I will here sometime next week if I’ll be going to Phoenix to get to know their transplant team!

I Survived…

…and so did my family!

Detoxing off of Zoloft was definitely not what I anticipated, and I can’t help but feel a little misled. At no time did my Psychiatrist ever mention that in the event I had to stop taking the medication I should wean off over a 90 day period. And when my cardiologist gave me a weaning schedule of 28 days, no one mentioned I would nearly lose my mind from weaning off the drug so quickly. But hey, I don’t have enough going on, what’s a little extra crazy to add to my life’s entertainment value.

Thankfully the crazy has passed, as have the withdrawal symptoms, and I’m starting to feel a little bit more normal (hey no laughing!)

I’m off to Mayo in Rochester again next week…I pray this trip is better than the last.

24 Days

It’s been that many days since I took my last Zoloft. I know it doesn’t seem like much to a lot of people but to me it means the end of one reality and the beginning of another. Although that new reality may be temporary (six to nine weeks they say,) it is none the less real in my head.

It’s like a roller coaster you didn’t chose to ride and you can’t get off of. As if that weren’t bad enough, you never know how high the highs will be, or how low the lows go; you only know they are coming and you have no control. Let’s not even talk about how bad the music is from the seat you got stuck with on this ride!

24 DAYS!

39 days left…If I could stop the never-ending cycle of thoughts in my head I would.

  • No More Xanax
  • Write More
  • Speak Less
  • Psalm 23
  • Turn Off the Phone
  • Breathe
  • Pray
  • Don’t Judge
  • Tramadol is Poison
  • Curse More
  • Be Human
  • Micah 7:8
  • Walk the Dogs
  • Laugh
  • Be Courageous
  • Go to Church
  • Make a Friend
  • Listen

For the love of all things Holy, please shut up! Not you, me…can I have a Xanax now?…NO!

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!