So, I’m going to write this as best I can, hoping that it makes sense through my already foggy state of mind … but this link is a perfect first example of how Entertainment is one of the categories of design on my website. Humor, in this case, is one of the best forms of medicine to help you get through the hardest days, to fill the moment with happiness, here and now, which is all that really matters.
One of my biggest concerns these past six years… and I don’t want to say fears, in case it might be taken negatively, though it is a fear… a positive one, something I’ve even written content about for a future post. There’s positive fear and negative… the positive a good thing, based on acknowledging reality to protect yourself.
Back to the point right now though, one of my biggest concerns has been the exact thing that happened this last year… A large and sudden weight loss without the ability to use TPN to gain it back. The Doctors misdiagnosed me twice, once in May, that led to two weeks of heavy and nauseating IV antibiotics… and then, the big one in September. This resulted in 3 weeks of antibiotics, in addition to the physical stress of all the procedures while in hospital that 1st week! Again, they jumped the gun, and the nauseating treatments that I took home with me were based on a false positive test result as well! Over each 2-3 wk period I lost 8 lbs! I’d worked so hard to get my weight back up, so to lose 16 pounds just this year, over a total of only 4 to 5 weeks, was beyond frustrating… in truth it was devastating and simply put, heartbreaking.
My love of movies and my tendency to compare things to them as references almost daily, always leads me to think of The Princess Bride with this one 🙂 … The scene where Buttercup says, “I died that day and you can die too as far as I care.”… And she pushes The Man In Black (Wesley) down the hill. For all you Princess Bride fans, you know the famous line that follows here 😉 , “Aaaasssss… Yoouuuuu… Wiiisshhhhh”… And of course she throws herself rolling down after him. LOL (By the way, if you haven’t seen the Princess bride yet, I think it’s gonna have to go to the top of your must-see list after this. It’s truly one of those all time best fun movies for any audience, but that’s just my opinion ).
The one difference, is that buttercup died emotionally that day, her physical health keeping her alive as she wandered aimlessly. Me, I literally died physically, my heart and emotions keeping me alive by doing things that lift my spirit and give me strength and purpose each day… A careful and well-balanced routine of medications and IV’s, for nutrition, hydration, vitals, adrenals etc. have been my basic life support daily. Ironically, I was lucky, the amount of calories that I use to need for one night, before my last surgery and complications, became the amount I’ve needed for a full week to keep up my weight ever since. (Talk about a metabolic change!)
As heartbreaking as it was that my body shut down, I told my parents and the doctors that in a way, it helped to save my life these past years. One major complication, that carried over from even before my last surgery, was that I could no longer absorb and process IV fluids correctly. (That was part of the then “new” complication they were actually supposed to be fixing) The result was really bad fluid retention that literally drowned my organs, back when I was still needing my full/high calorie count. They had to give me lasix daily, just so I could take the full IV bag every night. Now, as long as I didn’t lose weight, at least we wouldn’t have to worry about how to get the calories in as we waited for the next surgery to hopefully fix everything. Looks like our worry free time is over…
Why is it that it’s only after the concern happens that some doctors finally seem to “get it”, that they finally see how real what you’ve been trying to tell them actually is? Yet even now, after saying that, there is still a part that they don’t seem to understand… and it’s the part that has to do with the basic science and math part of it all (which is what baffles me!).
Note:*My potassium (K) is always running low, a time when you would never want to give a person lasix for fluid retention, because it pulls K from your kidneys… to the point where it could be dangerous with how low my levels might actually drop. But that is only if you are giving the treatment on it’s own…without doing something to increase the K at the same time!
The Solution: Go full force with the IV nutrition and the increase in TPN volume and calorie count, at the same time bringing in lasix to help take the extra fluid off each day. My body can then be ready to receive the new IV bag the next night. Sounds easy enough, right? The key to this working is bringing the changes in TOGETHER, at the same time, so the increase in fluid and K replaces the K that will be stripped by the lasix.
No matter how hard I tried, I could not get that communicated clearly! We finally got the TPN and lasix plan understood, but the increase in IV’s started last Thurs and the first treatment to help with the fluid retention isn’t even possible until tomorrow! 🙁 It was supposed to be today, until they remembered it was Martin Luther Kind Day and had forgotten that nobody was coming to the hospital for work, lol… so, one more added bag of fluids to get through.
If you look at the photos from last years blog Hugged By An Angel, the first picture of eyes shows some of the fluid retention from that morning, before my body has slowly processed the nights IV’s throughout the day. That was when I was on 1L size bags 3x/week. Jump to present day, and imagine increasing to 1750ml’s, 5x/week… without the lasix to help! OUCH!!!
I knew it was going to be the hardest weekend in a long time, but honestly, even I didn’t know it was going to be this hard! After just one night, at a speed that took 18 hours for the full bag, followed by a hydration night that was supposed to be my easiest night, to help my body rest… I already had double vision, head pressure that made me want to pop my ears constantly, a foggy head, cloudy thoughts and complete shortness of breath by Saturday. (Given I already had some of this because we’d increased to 4 bags and 1400ml with no lasix already, and no luck…besides the increase in pain and fluid retention of course, while the weight simply plateaued.) After Saturday, I slowed the TPN bags down to a rate that takes 20 hrs, as well as doubling the time for the added hydration night, praying they will find my blood levels strong enough to get the lasix treatment I need to balance the fluid retention and ease the pain.
I swear, I feel like any second now I should literally see a fish swim across in front of my eyes, like I’m my own walking fish tank!! Hehe WATERLOGGED! 🙁
Without much on the “to do” ability list, and seeing that “heart” is the thing that has played the biggest role in helping to keep me fighting every day, it’s important to find something that is able to fill my heart here and now. For everyone, that thing you need each day might be different, which is why Design To Live is set up as a magazine style theme, with all forms of design in life around us here to pull from for help. In this case, Entertainment is truly one of the best forms of medicine to help me get through the hardest time right now. The following weekly radio talk show is one of my favorite finds, that mum and I have come across! It’s so much fun for a good laugh! You really should check it out…it’s called, “Wait Wait…Don’t Tell Me!” ~ Their website will tell you all the ways you can find it in your area 🙂 .
I’m grateful for the little things, in this case the gift of distraction and humor … through an otherwise truly painful hell.
Saturday night ~ It was a great movie, how much I liked it totally taking me by surprise! I highly recommend the film “47 Ronin”, with Keanu Reeves… Seriously couldn’t take my eyes away!
Sunday ~ was of course the amazing Seattle Seahawk’s comeback! WOW!
Tonight ~ we are currently on the hunt for the winning movie choice, to see if it could possibly be as good as Saturday’s choice and actually keep me awake. 😉 One major side effect of the fluid overload is a full sedation like feeling. 47 Ronin was one of the first movies I’ve made it through without falling asleep. We’ll see if we get lucky again.
Please send good thoughts for the rest of tonight and tomorrow, that this last 20 hr IV bag at least doesn’t make things too much worse… that would be a miracle I’d be so happy for! And most of all, keep your fingers crossed that they find my potassium levels high enough to safely give the lasix treatment needed to finally relieve my pain and fluid retention overall! If we find the right balance, they will let me continue the treatment at home the way I once had to, until my weight is back up again. Until then… I will continue to find the smiles that help me through each day, one hour at a time.
ANY GOOD ENTERTAINMENT SUGGESTIONS THAT YOU CAN THINK OF? I’m always ready for some great new ideas to check out.
Happy Martin Luther King Day! xo