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.
Wednesday, March 19, 2014
Monday, March 17, 2014
Just.. Ugh... Everywhere
As I am sure I have mentioned many times before, I am on massive diuretics. My heart and kidneys just can't handle my water addiction, so I take lots of little white pills. An inconvenience, but whatever. The annoying part is how often I'm in the loo. I sometimes feel like I have visited every public restroom in the greater DFW metroplex. All of this sitting has taught me a few lessons and I now have a bit of a personal manifesto. I have considered mass mailing parts of my list to gas stations and restaurants. Undecided on whether or not to include a complementary air freshener.
Always put toilet paper on the seat before you sit. This insures that you know ahead of time about any water droplets left behind and if there is enough toilet paper on the ring. This is a vital step that I believe is worth a few seconds of closed knee dancing.
Bathroom doors should always have a coat hook. Two would be better. Locks should be regularly checked and repaired when needed. Having to hold your purse on your shoulder and keep one foot against a door of the handicap stall takes practiced balance. Not that I often use the handicap stall, it's just that sometimes you aren't given a choice.
There should always be a trashcan next to the door. I have a preference for grabbing bathroom doorhandles with the paper towel that I dried my hands off with. My 3 to 5 ft. dunking skills are pretty great, but an extra trash bin is just courteous.
I absolutely hate it when the floors are wet. I don't want to have to worry over whether or not my long line touched the floor. The line would be okay, but I keep it tucked against me or in my pocket, so...ew.
All this being said, let me tell you about how I tagged two bathrooms in one week.
One was in the emergency room. I had a pump malfunction and had gotten a bolus of my heart medication. The malfunction was totally different from any of the others that I had before, and I truly thought that the problem was with the internal part of the line. I had never had a bolus before and I thought I was going to have a heart attack. The whole thing was just weird.
Of course, if I had thought about it for more than a second, I would have remembered that I was using a new refurbished pump and I would have started by trading it out with my old reliable one. But I didn't think of the obvious until I was already in the emergency room being x-rayed, stuck with rather large needles and hooked up with my very own ekg. Sticky tape everywhere.
They had me take my shirt off and put on one of their gowns, but let me know that I could keep my jeans on. I thought this was a benefit. Then I was asked to give a urine sample.
I had my pump on my shoulder, jeans around my knees, trying to keep 10 yards of hospital gown and long line out of the toilet while holding a coffee mug sized sample cup between my legs, desperately hoping that I was capturing anything because I had somehow gone into silent mode.
Well my cup runneth over. This was something that I could not see until I was prying it out from between my knees. The cup was covered in urine but I couldn't do much about it in my current position. I tried to utilize the closest ledge, but it was half the width of the huge cup and it tilted towards me. I opted for the equally uneven sink thinking that with it I at least had a 50/50 chance that it would fall into the sink and not on me.
I gratefully used one of the wipes they provided and somehow managed to get dressed and quickly got the lid on the cup. Urine immediately started leaking from the top and onto the sink and floor. I couldn't figure out what the problem was, and I couldn't make it stop leaking. So, handling it like an explosive, I took it back to the toilet and slowly removed the lid. I finally figured out that the flimsy handle on the cup had a leak. I resealed the container and then looked around the small room surveying the damage. It looked like a small boy tried aiming while chasing a squirrel. I cleaned up as best as I could. The whole thing made me feel like Leslie Nielsen was going to bust in at any moment.
I was in there so long that my nurse finally came to check on me. Nothing like being 37 and having someone ask if you need help doing something you've written a manifesto for.
High on the rush of my first act of nature's vandalism, I tagged a Starbucks. Actually, I tagged myself at a Starbucks. I try very hard to buy a little something from the places that I intend to quickly use and then quickly forget about. Gas stations make this easier for me by providing oversized peanut butter cups for my travelling companion. Starbucks actually poses a slightly greater challenge because of the need for strategic caffeinating. Best not to get hopped up on lattes late at night when you already have an insomnia problem. But oh the temptation.
It was dinner time, my mom and I were heading home from the mega grocery store, and I very suddenly absolutely had to stop. Thankfully, there was a coffee shop oasis just seconds away. I think that if I visited there on a more regular basis that maybe I would not have been so distracted with all of the coffees and sandwiches. Must...not...order...latte. I tried to pick out my snack en route so it would be ready by the time I reemerged a lighter woman, but there were too many choices. The slight slow down was my downfall. I made it to my destination and all was going well until I saw that I had left the door unlocked to the single throne room that I was occupying. All cushioned seating was taken outside my door that just happened to open out directly to the room. Anyone else trying to occupy my space would have given everyone a glimpse of my one woman show. The door could not remain unlocked. I tried with my best muscle control to stop midstream to push the button, but I failed like Jane when she rushes from her squatting place when being asked if she wants to go to the park. Except I did not also twirl like she does.
Turns out, the door was locked the whole time. I hadn't realized that it was an "outie" I cleaned up as best I could, and then confused my mom by turning down food (free food!). I think I said something like, "Yeah... we should go now." I wonder if the baristas noticed that I tipped without ordering.
Lessons learned: When given a hospital gown, just get undressed. Inspect any small plastic cup that you are going to pee in for cracks. Hospital cleaning staff needs a tip jar. Double check bathroom locks before unzipping anything. Carry hand sanitizer. Starbucks sells decaf lattes and passion lemonade iced tea.
Always put toilet paper on the seat before you sit. This insures that you know ahead of time about any water droplets left behind and if there is enough toilet paper on the ring. This is a vital step that I believe is worth a few seconds of closed knee dancing.
Bathroom doors should always have a coat hook. Two would be better. Locks should be regularly checked and repaired when needed. Having to hold your purse on your shoulder and keep one foot against a door of the handicap stall takes practiced balance. Not that I often use the handicap stall, it's just that sometimes you aren't given a choice.
There should always be a trashcan next to the door. I have a preference for grabbing bathroom doorhandles with the paper towel that I dried my hands off with. My 3 to 5 ft. dunking skills are pretty great, but an extra trash bin is just courteous.
I absolutely hate it when the floors are wet. I don't want to have to worry over whether or not my long line touched the floor. The line would be okay, but I keep it tucked against me or in my pocket, so...ew.
All this being said, let me tell you about how I tagged two bathrooms in one week.
One was in the emergency room. I had a pump malfunction and had gotten a bolus of my heart medication. The malfunction was totally different from any of the others that I had before, and I truly thought that the problem was with the internal part of the line. I had never had a bolus before and I thought I was going to have a heart attack. The whole thing was just weird.
Of course, if I had thought about it for more than a second, I would have remembered that I was using a new refurbished pump and I would have started by trading it out with my old reliable one. But I didn't think of the obvious until I was already in the emergency room being x-rayed, stuck with rather large needles and hooked up with my very own ekg. Sticky tape everywhere.
They had me take my shirt off and put on one of their gowns, but let me know that I could keep my jeans on. I thought this was a benefit. Then I was asked to give a urine sample.
I had my pump on my shoulder, jeans around my knees, trying to keep 10 yards of hospital gown and long line out of the toilet while holding a coffee mug sized sample cup between my legs, desperately hoping that I was capturing anything because I had somehow gone into silent mode.
Well my cup runneth over. This was something that I could not see until I was prying it out from between my knees. The cup was covered in urine but I couldn't do much about it in my current position. I tried to utilize the closest ledge, but it was half the width of the huge cup and it tilted towards me. I opted for the equally uneven sink thinking that with it I at least had a 50/50 chance that it would fall into the sink and not on me.
I gratefully used one of the wipes they provided and somehow managed to get dressed and quickly got the lid on the cup. Urine immediately started leaking from the top and onto the sink and floor. I couldn't figure out what the problem was, and I couldn't make it stop leaking. So, handling it like an explosive, I took it back to the toilet and slowly removed the lid. I finally figured out that the flimsy handle on the cup had a leak. I resealed the container and then looked around the small room surveying the damage. It looked like a small boy tried aiming while chasing a squirrel. I cleaned up as best as I could. The whole thing made me feel like Leslie Nielsen was going to bust in at any moment.
I was in there so long that my nurse finally came to check on me. Nothing like being 37 and having someone ask if you need help doing something you've written a manifesto for.
High on the rush of my first act of nature's vandalism, I tagged a Starbucks. Actually, I tagged myself at a Starbucks. I try very hard to buy a little something from the places that I intend to quickly use and then quickly forget about. Gas stations make this easier for me by providing oversized peanut butter cups for my travelling companion. Starbucks actually poses a slightly greater challenge because of the need for strategic caffeinating. Best not to get hopped up on lattes late at night when you already have an insomnia problem. But oh the temptation.
It was dinner time, my mom and I were heading home from the mega grocery store, and I very suddenly absolutely had to stop. Thankfully, there was a coffee shop oasis just seconds away. I think that if I visited there on a more regular basis that maybe I would not have been so distracted with all of the coffees and sandwiches. Must...not...order...latte. I tried to pick out my snack en route so it would be ready by the time I reemerged a lighter woman, but there were too many choices. The slight slow down was my downfall. I made it to my destination and all was going well until I saw that I had left the door unlocked to the single throne room that I was occupying. All cushioned seating was taken outside my door that just happened to open out directly to the room. Anyone else trying to occupy my space would have given everyone a glimpse of my one woman show. The door could not remain unlocked. I tried with my best muscle control to stop midstream to push the button, but I failed like Jane when she rushes from her squatting place when being asked if she wants to go to the park. Except I did not also twirl like she does.
Turns out, the door was locked the whole time. I hadn't realized that it was an "outie" I cleaned up as best I could, and then confused my mom by turning down food (free food!). I think I said something like, "Yeah... we should go now." I wonder if the baristas noticed that I tipped without ordering.
Lessons learned: When given a hospital gown, just get undressed. Inspect any small plastic cup that you are going to pee in for cracks. Hospital cleaning staff needs a tip jar. Double check bathroom locks before unzipping anything. Carry hand sanitizer. Starbucks sells decaf lattes and passion lemonade iced tea.
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