Long Time, No Write…

No Comments

How in the blue blazes has it come to be December already?? I cannot believe that my last blog was in July! We were eating peaches and getting our skin scorched in the sun and now, we’re watching the Christmas tree glittering in front of the fireplace. What a crazy idea, the passing of time?!

But passes it does, and it’s not asking us any for permission either …

And I don't even have a good reason for my long absence other than ... life. Life happens, you know, and lucky we are that and when it does!

It’s been a busy year, personally, and for that I am grateful. It has also been a healthy year (or should I say, as I always do, “healthy for me”), and for that I am doubly grateful. We have travelled a little here and there, even went on a cruise in November. I only traveled for work one more time since I wrote here last. Travel is still one of the things I enjoy the most, and one of my more challenging things. I have the most trouble finding things to eat when I am away from home, because everything has to be vegan but not very green. The world still thinks that vegan means “a plate full of greens”, so it’s a bit challenging. I also have trouble sleeping and really getting comfortable. When I travel for work it’s always at very high altitude and I can hardly breathe and I tire even easier there. But I am so much in awe that I can still do it and live to tell the tale.

In October, my husband and I were lucky enough to be able to go to the FH Summit in Atlanta, GA. This was our first time although this has been happening every year for seven years now. The FH Foundation surely knows how to throw an educational event! We have learned so many new things, we have seen how much more people know about FH and how much more educated people (including doctors) are about this disease now. This Foundation has truly been doing a labor of love! We have learned about how doctors screen better nowadays for it, what therapies are out there in research or even approved but maybe not as well-known. I was the most pleasantly surprised at how incredibly approachable the doctors were at this conference, and how willing they were to learn from us, the patients, about what it means to live with this condition. If you or someone you know has FH, I would recommend attending, if you can, at least once. It will open your eyes and your hearts!

Besides the travel which is always draining for my heart especially, we have had a challenging year emotionally, too. My mother has still been battling lung cancer; my dad just had a stroke (more about this in a future post, I promise!), our last living kitty died while we were away on our cruise and my husband left a job and just started a new one which was a bit of a roller coaster, as well. Through and for it all, we are beyond grateful that we’re (almost) all still here and alive and managing our health the best we can. ‘Cause if you don’t have health how in the world can you do all the other commitments life throws at you?

Lately, I have had new symptoms of dizziness and light-headedness, low blood pressures and high, too. My INR nurse has noticed that around the holidays and when I travel I have a hard time keeping my INR in range (I still fight with this ONE number!). I mean, I have accepted that my cholesterol will always be high, but the INR cannot make up its mind! One day it’s 1.4, a week later it’s 2.9! Go figure! But this is what “normal” is for me now.

I wish I had more time for naps, as I feel drained almost always, but not really sure how to make time for that. The simple act of living for people like us means constant effort and awareness. I was telling my husband (as if he didn’t know quite well!) that there is not one thing that I put in my mouth that I don’t question: “oh, could it have butter? What about eggs? Could they have boiled this in chicken broth? Or since we’re in the South, could they have fried this in bacon?” I love eating at Oriental places because they never sneak in cheese into anything and they always steam their rice! At least that! There is no hour in the day that doesn’t pass without asking “oh, did I take my morning drugs? Is it time for Coumadin yet?” Or any week that I don’t think “is this Wednesday time for my bi-weekly Praluent shot?”

But we all, no matter who we are and what we’re up against, have a cross to bear one way or another.  We all have our own journeys. I am sure thousands of you have kids you worry about, parents you want to see living to an olden, ripe age. Jobs you hate and which stress you and yours out every hour of every day, houses you want to get out of or dying to get into … All I have this sick ol’ heart and my cholesterol. And this is OK, in the scheme of things, I guess. This … is manageable.

I promise to return much, much sooner with more updates about recent blood tests and heart and aortic tests, and also about what unfortunately happens as a complication of FH (will update you on my dad’s stroke). I promise I won’t be “on vacation” for months again.

Happy December to all till then! And never forget: make time for yourselves before you help others.

This blog is reprinted with permission from A. Wilson. To view original post visit:

https://livingwithfh.blogspot.com/2019/12/long-time-no-write.html

 

Blog Post by A.W.

About this Blog

This blog by A. Wilson follows her  everyday journey of living with familial hypercholesterolemia (or FH). She shares her own persona experience with this inherited disorder, and how she manages it daily - from what literature she reads on the topic and what her doctors say to how she lives her life. This blog does not offer advice, in any way, to anyone suffering from this disease.

Leave a Reply