And Then Everything Changed Again

I have been losing track of time. I think it was almost a year ago that I changed PH doctors. About a week later I was put on a schedule of Flolan increases. I'm truly hoping the next time I read this post that a cure has been found and what I have put my body through will be a distant memory. Actually, lunch today is a distant memory so safe bet that even without the cure I am going to block most of this out. Oh bother.

Each increase, done every two weeks, has been a new adventure. For one of them I was really sleepy until the next increase when I had a headache until two days before the next increase. That one brought nausea. Some are a random combo of side effects. I now have a box of immodium at each of my caregivers homes, along with pain and nausea meds. I lost 20 pounds last year and I sleep with oxygen on. I also use it after meals and whenever someone just offers to turn on Darth Vader. Not so named for its looks, but rather for its sound as it pumps air down a canula to me.

 My platelets have staid down, so this past year has seen some pretty spectacular bruises. Most notable would be the black eye I gave myself from rubbing my temples during one of my two week headaches. That one just laughed at pain meds. Next notable was when I rolled out of bed hitting and taking with me the nightstand drawer. My cheek hit the corner of the table, my arms landed hard on my porcelain trash can and bed frame sideboards. It didn't help that our bed sits high. So many bruises. Karl was concerned about being seen with me in public. Thankfully, the weather was cooler that usual and wearing a cardigan everywhere was not out of place. Must remember to not roll out of bed during summer. And there really was no reason for it to happen. I was awake, my tableside lamp was on. I think the only reason why I went over was because my pillows were arranged a little funny. I was rolling over and the pillows kind of kept me going in that direction.

So many events that I had to cut short, not getting to spend as much time or even any time with loved ones. Snapping more for no reason at all. I noticed a pattern of prolific imaginative cursing whenever I was tired, so I trained myself to say "biscuits" instead. Jane still recognizes it as being fowl language and will still leave the room even when I whisper "biscuits". At least it's more socially acceptable in the children's section of Target.

Having PH was already life limiting. Adding on med increases takes away so much more. But then there's the hope that it will all be worth it. That when you are done increasing, you will have gained health back and will be able to make up for the time you lost.

And then sometimes it goes the other way. I don't know why, but my heart is just unwilling to fully cooperate. My last MRI showed that the left side of my heart does have a little more room to beat, but the right side is still three times too big.  The blood test that measures the amount of heart damage I have is getting worse and faster. But still we hope. Still we do these increases. And another MRI is just over a month away. I'm guessing that afterwards I will be told that I will have to be on the lung transplant list again. This time it will be for real. I'm getting around pretty well, but with the stress that my heart is under, the worry is that I will go to sleep and then just not wake up. It's a little strange to wake up from even a nap feeling relieved to do so.

So I am flailing. I've started going to an energy healer about twice a month. Having enforced meditation time has been very relaxing and I always leave feeling happier. I have started seeing a personal trainer twice a week. If there is a chance that I am going to being having a major surgery, I want to make sure I have as much strength as I can muster. I enjoy the workouts even though I think the pain of creating new leg muscles is cruel for someone on diuretics.

I worry for my husband and family. I knew that death was part of life, that was the package deal. What made me fully understand this was losing my dad. Living without someone, even a person that you had problems with, is hard. Not having their voice in this world, them not being reachable, knowing that their experiences here have stopped, that's harsh. It's hard to figure out how to live that way. I see people on facebook who are obviously unable do so. I very much want to spare my husband and family and friends this experience. Ugh. I have got to stop moving the tissue around the house. I shop at Costco, there is no excuse for this.

I have got to get some sleep. This was a good start. It's nice to get this all down. Whenever I think on these things, my mind floats me back up with hope that maybe this round of increases will work, that I shouldn't worry because everything could work out and then I would have wasted perfectly good time worrying. We could find out that pixie sticks cure PH. Anything is possible.