Another reason I don't feel like posting is because things are going pretty OK right now, honestly, and this is the place I come to to vent or rage, and I don't have a lot of that right now. But in all of the reading that I used to do on all of the kidney blogs that I used to follow, I noticed that, when all the drama was over (for the most part) they all stopped blogging, and that frustrated me. I wanted to know what they were doing....all of the little mundane things after all of the monumental crises....I wanted to hear stories of their new normal and the journey as to how they got there....I needed to know that it was possible to live again on the other side of transplant or dialysis. So knowing this, I'm going to work on becoming a more frequent poster again. Even if it's literally the mot mundane things ever.
I'm a lot frustrated at myself for the entire last year, especially when I realize how far I've come. We went on a pretty significant walk tonight with Rosie, and I kept thinking in my head "I couldn't do this last year because I was SO sick". So many things happened in the last year....one of my best friends came to visit me with her family for a few days and it was incredible, another friend of mine decided that her life was much better without me in it and it's hurt me more than I can describe. I've tackled doing hemo at home, and we finally took a vacation that required me to dialyze while on it, and I finally got back to doing hot yoga again and none of these are really documented well in this blog. I will forever kick myself for not writing about it, but there were times that I just couldn't, and other times where I just didn't care enough about anything. I was seriously depressed for part of it, medicated myself, and then finally saw light again.
I am suffering a bit from a fairly intense, dry tickle cough that I've had for months. It'll get better for a couple of weeks in the midst of antibiotic, but it keeps coming back. I've thought the entire time that it's because of my sinus issues (of which I'm getting surgically remedied on Friday....at least I'm hoping for some remedy) but I did some research today and think it may just be one of the shittiest side effects from my bronchiectasis. I put in a call to my pulmonologist, who is, of course, not in this week, so we'll see what she has to say. I honestly get sick to death of dealing with medical crap now that I let things go WAY too long, and then by the time I get a hold of the doctor I'm in a full-blown panic, yet this is the first they're hearing of it and are kinda blindsided by my frustration. I'm sure there's not much that can be done for this cough, but I hope not. Joacim has essentially moved into the spare bedroom now because I cough about every 15 minutes ALL NIGHT LONG. I cough so hard that I vomit. Frequently. It sucks all to hell. I need it to get humid again, because I never seem to cough in the shower, so I'm hoping humidity helps....it's been brutally dry this winter.
My blood pressure is SUPER LOW now, sadly not from the removal of my kidneys but due to a new med. Now it's a little too low and is causing some dialysis issues, but we'll work on weaning off of some or lowering the doses to figure out what the sweet spot is. I just cannulated my fistula in the area from my January surgery and it's going well...pressures are good. I should have a buttonhole established by next week, and then hope to start training for nocturnal dialysis.
I did get to do a fun thing last week with the NKF. Optum is a healthcare company based here by me, and they have a team of people who were putting together bags full of goodies for dialysis patients that they were going to deliver to city clinics. I went there to talk to them all about my story and what it's like for me on dialysis. I didn't have a prepared talk...kinda just went from the hip on this, but it went well. I got great questions and overall really great engagement from everyone. Didn't think I could do that a year ago either, but look how far I've come......I hope to get the chance to do a lot more speaking events in the future.
And now a bunch of vacation photos because they're fun and happy :)
|Dialyzer (101lbs) and medical supplies (54lbs)|
|first vacation session|
|First impression of Harry Potter World: AWESOME!!|
|Ice cream break|
|Train to Diagon Alley|
|Talking photos in Hogswarth|
|Wet clothes from a ride that, according to Joacim, "we wouldn't get too wet on" ;)|
|Giant connect 4 at the hotel pool area one night...|
|Family selfie on the first day at Volcano Bay|
|Funniest activity with Sue the Raptor|
|Good to see smiles....|
|Volcano Bay was amazing|
|Obligatory family selfie at the end of the day|
|Boxes of dialysate delivered the day before arrival|
|First vacation session...|