It has been a while since I posted here. I have started a few times and either quit or fell asleep!
Some have asked how things are going. Since I posted last, I made one last trip to the NIH for a short three day stay to make sure the intestines were healing well and inflammation diminished. My diet advancement has been less than ideal. It has been slow and painful. It hurts to eat certain foods and larger quantities. I still rely mostly on the tube feedings for nutrition. I can eat some throughout the day but it almost always hurts to a degree. Sometimes it is only a little discomfort. Other times, I struggle to catch my breath and need to lay down. Eggs, oatmeal, grits, and goldfish are my go to foods that I eat in small amounts and are usually ok. Coffee starts the day every day! I never miss that!
Thanksgiving was rough. I wanted to try to eat more and it did not go well at all. We can just leave that there.
There are some great milestones to report.
I did wean off the high dose steroids after Thanksgiving finally, which then allowed my wounds to completely heal from surgery. This has been so wonderful!! I have more energy, and PT is helping me regain strength. Small things like bending to put a sock on are so much easier now! Sleeping happens in 3-5 hour blocks now instead of 1-2 hours only. I am gaining weight and am up to 122 pounds. I was 103 at the beginning of October 2020 at my lowest. I am so thankful to have gained the weight and with it energy and vitality! My head is more clear and i am not falling asleep during the day lol! I am happier. Being tired, weak, and in pain makes daily living difficult. I have much empathy for those dealing with chronic pain and illness!!
I have a lot to be thankful for and try to focus on the “gains” even though the recovery has been much slower than I ever imagined! I am still in quite a bit of pain daily and have a hard time eating more than 500 calories a day by mouth. I am still talking to the doctors at the NIH. They were always honest with me that the outlook was not clear. We don’t know if my GI system will ever be able to consume food the way it once did. I lost my stomach in 2013 to cancer and part of my small intestine to inflammation in 2020. Cancer is NOT back and that is still the best news ever! The remaining gut does not function the way it should. I use a new prokinetic agent to make things work better because the peristalsis movements are impaired. It is not a laxative. My sphincters were removed with the stomach which means food comes back up the esophagus at times and can lead to aspiration at night if I am not careful and sleeping at an incline. I have adapted and am learning to be ok with it all. I was texting a friend the other day about how I am not looking too far ahead. If I try to imagine life in the future, it can be overwhelming. I don’t know what will happens with this tube or my health that far ahead and just need to focus on today. I would love to be done with this tube. Maybe I will one day. Maybe not. At least I am here and nourished and thriving. I say that honestly.
That is the update for now. It is always awkward posting these. I wonder who really wants to know all the details anyway! Haha. I guess if you want to know, you can read. Otherwise scroll on by. No hard feelings lol.
There are other new challenges. I learned in August while at the NIH, my spleen shrunk and no longer works to fight off the bacteria it is charged to kill. This happens in 20 percent of people with APECED (my genetic condition). I take the pink liquid bubble gum candy flavored antibiotic we all grew up on, named amoxicillin, daily. This will be a prophylactic treatment to avoid a potentially fatal infection (sepsis). Certain bacterial infections may require IV antibiotics and hospitalizations. I am more nervous about that than COVID. I am not diminishing COVID...anyway. That is the fear that lingers in the back of my head. I have to learn to be smart, live well and fully but not wreckessly, and ultimately NOT let the fear control me. It is similar to the way we all are learning to function in a pandemic. The fear can never have the power. We still cannot throw caution to the wind. I will fight to keep myself from being fear’s slave. It is not easy. Anyone with a chronic illness or cancer knows what I mean.
Maybe another time I will post my musings on how I cope emotionally with this all in hopes it can help someone else. I am seeing a counselor currently to help process all that has happened in the last two years. It is so incredibly helpful! Stuffing emotions is never a good choice.
Once again, Thank You to everyone who has texted, called, mailed cards etc. You probably do not know how much it means to me.
