Category: The Faith

It’s Official…

…I’ve had ENOUGH!

Holding it together these days hasn’t been easy, and I’ve cracked a few times, maybe a few too many.

Medically speaking I’m doing OK. I’m almost 10 months post heart transplant and the doctors still haven’t been able to fine tune my medication so that I’m not always adding or removing something I take daily. Some of it makes me sick, some of it makes me feel weak, and the big one makes me feel exhausted for no reason at all. I know my body is strong; how could it not be? I have Primary Amyloidosis (AL), which by the way, has a 6 to 12 month mortality rate, I’ve survived over four years. I had a heart transplant because the AL put me in acute congestive heart failure and caused a lovely case of restrictive cardiomyopathy. Now I’m told I have Osteoporosis in my lumbar 1 – 4 and am close to having it in my hips as well. All that is a result of the chemo therapy I received for the AL and the anti-rejection drugs I take for my heart.  I’ve been hitting the gym for several weeks now. Not knowing at the time I started about the Osteoporosis, it was a good thing I did. The most effective treatment for it is weight training, which is what I’ve been focusing on to build up the strength I lost while I was sick. But my back and hips hurt and although weight training is ideal, not necessarily at the pace I’m going at. I can’t win with this body of mine.

Then there’s the food. The trainer at the gym wants me to eat a certain way, which I’m totally willing to do within the parameters of what I can and can’t eat being a transplant patient. In reality it’s not that different than how I was eating before the transplant. However, my stress level is so high I can’t eat, and not eating is just as bad as eating too much. How do I get the calories I need in a day without throwing it all up because I’m so stressed out my stomach is in knots? I’m trying, but there isn’t a week that goes by that more stress isn’t placed on my shoulders by someone.

There’s also a family component to all this. Issues far too complex for me to even begin to figure out, and I’m not 100% sure I want to. I have two married sons, one of which doesn’t have much to do with us and his wife even less. The other and his wife live with us, which creates it’s own set of issues that I can’t address because it’s causes me even more stress than I can handle. I have a mother who I’m afraid of and I couldn’t tell you why, other than I hate the sound of disappointment in her voice when I can’t do what she wants me to. I still have no idea who my biological father is, which causes me more hurt than my mother can imagine. But I keep the peace because I think that’s what I’m supposed to do? I don’t know?

I left the church I’ve been a member of for over 10 years. That’s been a gut punch to say the least. I think what hurts more than anything is they either haven’t noticed or don’t care; either one isn’t great. I’ve tried to get past it and attend church, but I can’t get out of my mind how little they did when I needed them the most. I’ve gotten a handful of phone calls in the last five years, but no significant support for my “church family.” Now I’m torn about finding a new church because I don’t want to be hurt like that again. I surrendered myself to God in that church and the keepers of the church were not very good stewards of my vulnerability. How could I go back to that, and how do I try a new church not knowing if they will do the same thing?

School is starting in about two weeks and I go back and forth over whether or not I can handle it. Some days I feel confident that I can do it and others I think it could be a huge waste of time and money. I’m 47 years old getting a degree in dance! What was I thinking? I’m not sure I’ll be able to keep up, but I’ll never know unless I try. The fear in me wants to stop before I get started, but then I’ll always wonder if I could have made it.

Every way you slice it I have stress coming from all directions. Some of it I may have control over but some of it I never asked for, but have to deal with it none the less. I lose sleep at night thinking about all of the things I should have done or didn’t, or should do, but don’t feel confident enough to stand my ground. On the surface I may appear strong, and my body may be, but my emotional state is not. I wish I had the emotional confidence to tell the people in my life what I need to tell them and not have their reactions affect me so deeply. And, of course, the ultimate fear is that they will all stop coming around all together and I’ll be physically alone and emotionally alone at the same time.

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!

From Pain to Power

I travel between my home and Mayo Clinic in Rochester Minnesota every three months for check-ups and treatment. In the time my husband and I have been going to Rochester we found an amazing church we love to go to when we’re there, Rochester Assembly; it’s a wonderful home away from home for me. I’m so thankful that they stream their services online and they are available to watch remotely. Today a service by Paster Jono came across my Facebook page called “From Pain to Power” and it was just what I needed.

Watching this reaffirmed in my heart that God is calling me to turn my pain into His purpose. God is calling me to walk thru the valley and not stand on the outside looking in. I have this pain for a reason and I believe I know what that reason is. It’s time for me to seriously start moving forward with planning my community group for the Fall for people with chronic illness. God put it on my heart months ago and I’ve been reluctant to dive in, but He’s given me so many signs that this IS what He is calling me to do with my life.

Thank you Lord for giving me one more sign!

Surprised and Thankful

Man and Freedom
“Man and Freedom” by Ivan Meštrović. The sculpture depicts the human desire for indepence and self-realization. He is mounted on the wall in the Nathan Landow Atrium between the Gonda and Mayo buildings.

We’ve been in Rochester Minnesota at Mayo Clinic since Monday. Tuesday and Wednesday were scheduled to the max and I had one appointment after another. By the end of Wednesday evening I had been stuck a grand total of eight times, either getting multiple injections for various reasons or having blood drawn. To say I felt a tad bit like a pin cushion would have been an understatement. Really Thursday was the big day, that was when I had to go into the hospital for my fifth heart catheterization. The cardiologists in the heart and lung transplant department fully expected my heart to be in worse condition than it had been in July and October as did we; we were told to expect it. In all reality my heart should be getting worse.

Because of my Primary Amyloidosis, I have amyloid buildup on my heart. It causes my heart muscle to not expand and contract as it would normally. I was diagnosed pretty close to stage 4 of the disease so the buildup on my heart was/is significant. I went through five rounds of chemotherapy and an autologous stem cell transplant (basically a bone marrow transplant with my own bone marrow) and I have been in remission since April 13, 2016. I was told very emphatically not to expect any recession of the amyloid on my heart. Although it was possible, it was highly unlikely.

A year after my stem cell transplant, April 2016, an echocardiogram was performed to measure the thickness of the amyloid on my heart and at that time there was no recession. Disappointing, but not surprising. Another echocardiogram was done in July, 2016 and again no recession. We hadn’t expected anything different.

Now we’re into March 2017 and I have yet another echocardiogram and this time, recession. I have a heart catheterization the next day and the cardiologists conclude that my heart function has actually improved since July and I no long need the extra medication (inotropic therapy) they anticipated I would need to get me by until a heart became available for transplant. As a matter of fact, I don’t need to be listed for heart transplantation at all at this time because as of right now, it looks like my heart function may be improving.

Of course they can’t give us a reason why because they simply don’t know enough about the disease yet. But we’re going to take this positive news and roll with it for now.

I’ll come back to Mayo in three months for another check-up by the heart and lung transplant team, and they will continue to keep an eye on me every quarter. We hope that my heart continues to improve and heal itself over time and I stay in remission. With any luck, there will be new drugs developed in the near future to help eliminate the amyloid on my heart. There are currently two clinical trials going on for drugs that do exactly that, one of which is looking very promising. Although it’s not a cure, they are at least getting closer to a treatment for Primary Amyloidosis with Cardiac Involvement.

Right now I’m thankful…thankful for all the prayers and well wishes. Thankful to my family and friends who has been helping me get through all of this, because, let’s keep it real, it’s been hard at times. Thankful to the doctors and nurses who have cared for me over the last five years. But most especially I’m thankful to God for giving me this chance to live a purposeful life, I won’t waste it!