Fall ’25

The Tyvaso came towards the beginning of the month and I had to have a nurse come show me how to use it, apparently it’s mandatory. It came the week before my siblings and I went to Tennessee. I was bound and determined that if they went again, I would join this time. I’m a little concerned that I won’t be able to do a lot of things and getting ready for a trip with all of my medications and oxygen now requires a lot of additional planning. My siblings and their spouses were so considerate of my limitations. They pretty much did whatever it was I felt I could do. Our first day was in Pigeon Forge, we went with no plans or expectations. We played putt-putt golf, which ate up a lot of our time when you think about 12 people playing. We ate at Margaritaville. I really wanted to do the Alcatraz crime museum but between the putt-putt and the walking I had enough for one day. I have several days ahead of me and don’t want to be a party pooper by exhausting myself the first day. The second day was Gatlinburg, we started at Skypark, they have a Skybridge that I wanted to mark off of my bucket list. It’s 680 ft across (the longest bridge of it’s type in North America) and 140 ft off the ground. We took the walkway to the one side and walked the Skybridge back. I did ok until about the last 200 ft or so when it becomes an incline. Inclines are almost impossible for me now and my concentrator just didn’t keep up with my needs. By the time I got to the other side I was so out of breath that it took a long time to recoup. It didn’t help that I had a mental breakdown. I was feeling so many emotions, I was proud of myself for doing it but also sad that I just can’t be “normal”. I was trying to regain my breath when my brother, G (Alpha) came to my side, he didn’t say anything, he didn’t have to, just his presence and support was all it took and I began to cry like a baby. Then others joined in to let me know that I wasn’t alone and I want to believe that they felt what I was feeling. I finally regain my composure after making a fool out of myself in public but Hey, I got a t-shirt out of it from G to remind me that “I did it”. As hard as it was, “I did it”. We have lunch at Dick’s Last Resort and I think we all had a great time. I would not suggest you go there unless you have a good sense of humor as the service is intentionally rude for entertainment purposes. By this time I am ready to return to our AirBandB but most of the others stayed and tried some Tennessee whiskey and did a haunted house. It’s a good thing I did return when I did because by evening my leg muscles were angry with me. I think I actually may have gone into a small case of rhabdomylosis because this wasn’t normal muscle aches, my leg muscles were rock hard and I could barely move them. Luckily the room that B and I got was the only one with a jet hot-tub. B helped me get in and out of it and it seemed to help some and then I downed 800 mg of Motrin. By morning I felt better but today is a day of rest. We do visit a small local store that sells Amish goods, did the Smoky Mountain Alpine coaster (secretly, I may have enjoyed this the most), ate at Boss Hogg’s BBQ shack and then went to a small antique shop. Most evenings are spent playing games or sitting on the porch. I don’t know about anyone else but I’m having a good time. Our last day we make the long trip to Cade’s Cove Scenic Loop, it’s part of the Great Smoky Mountains National Park. I have to say I was quite disappointed in my choice to do this. There was really only one part of it where I could actually get out a view more than one building of the old settlements but at least the driving views were cool, AND I got to see a bear down in the creek just as we were living thanks to B’s quick eyes or I would have missed it. We ate a Mexican food truck called Taqueria Macho Taco on the way back to our place. The evening brought a heart to heart with my big sis, B. She lives in Washington state and she’s the one that also has autoimmune disorders. I remember during our conversation I told her that “I’m not afraid of dying, it’s living my family behind. I don’t want to be the reason they feel grief and pain”. And it’s the truth. Dying doesn’t scare me, I know where I’m going. But when I think about them living life without me, that’s what brings the emotions.

When we return it’s not long and my father needs to be admitted to the hospital. He’s very anemic and needs blood. They keep him for several days, do several tests and give him blood a few times. They really don’t have many answers and the only way to make a final diagnosis would require a bone marrow biopsy to see if his body isn’t producing any blood cells. He declines the test. The only other thing they are thinking is that his mechanical heart valves are basically shredding the cells when the blood goes thru them. The only treatment for that is surgery and he states he won’t do that either. Our family’s annual FallFest is coming up and we (the family) don’t want Dad to miss it as we know this will be his last. Luckily, things get arranged in time for him to be discharged and he is able to go. Another blessing from above.

The next weekend brings about a change that I have been putting off for two years. Back when I was diagnosed B wanted to move me into a smaller place because our home and yard are just too much and getting me moved “in to town”, will get me closer to my girls and closer to the Cleveland Clinic. Well, I didn’t want to give up my home, so our son stayed behind and we rented a lower level apartment in the same building as my middle daughter, K. This was also a blessing in timing as K’s building stays pretty full as it only has 12 apartments and they go fast. Well right after my appointments in August she said that the bottom apartment was going to be available. This apartment just happens to be the closest one to the laundry area too! I’m telling you, I can’t make this stuff up. I believe this is the hand of God. Always moving things in to path just when I need them. On October 4th, I said goodbye to my home, tears streamed down my eyes. Looking back at it, that was silly because we still own it. I can still go sit on my back patio any time I want, but that day it felt like I was closing a large chapter of my life. But, I’m happy to say that B was right. The apartment is much more manageable for me, so now I don’t feel overwhelmed, I feel accomplished!

Next up is my next round of appointments and a benefit dinner for me and my family to help alleviate some of the expenses we are about to incur. My middle daughter had already started a GoFundMe and her best friend is organizing the dinner. The dinner is planned for the evening of Nov. 7th, I will see the pulmonary hypertension specialist that morning. I hope I don’t get any bad news to damper the evening. Guess you will have to read the next post to find out.