I rarely complain - I dislike it so much it's almost a pet peeve. But for whatever reason I am feeling the need to complain today. So here goes. Oh, and I'm adding in a bunch of sunshine/solsticey pictures to make it more palatable.
1. Pulmonary Rehab Sucks Ass
Yes, I devoted an entire blog to the pleasures of pulmonary rehab last week. But, a 'complaining thread' wouldn't be complete without me reiterating the absolute domination of my life and energy depletion that rehab is.
This week, Tuesday almost killed me with the "long walk" (30 minutes) followed by "leg day" at the weight station, 20 minutes on the exercise bike and then a 40 minute floor class with more leg and arm exercises. (As an aside, let me just tell you what all is in involved in leg day: leg press, leg curl, leg lifts on the nautilus machines; ~ 20 standing leg lifts to each side and then back with 2 lb weights on my legs; heel toe raises standing on one leg at a time; 30 seconds of balancing each foot on an inflated disc thing; ~ 12 step-ups (think aerobics class) with a bent knee leg lift; and a couple of stretches.)
Wednesday was another long day - started with a 10:30 am transplant education class at the hospital before rehab (left the house at 9:30, got home at 6.)
Thursday was grueling. I had an appointment with the transplant psychologist at 11 am - time well spent - that left me feeling pensive and a little sad. But still, it's hard to show up as an Eeyore at rehab - I was able to put on a bit of a smiling face to get through it. I ended up physically having a really good day but was just (you guessed it) totally exhausted by the end of it.
Friday was...awesome...because there was no rehab! That's right. I skipped it (sorta). But I did have a pretty good reason. Our power went out Thursday night before I could finish my therapy. As I tried to fall asleep, I was coughing and hot and couldn't get comfortable. It ended up being a non-restful night. I had two diabetes appointments Friday morning that I really did not want to miss, so I went to them but skipped my afternoon duties in lieu of a very long nap.
2. I Possibly Have The Worst Oxygen Company in the World
I have had many problems with my oxygen company over the last year. I have a literal list of about 10 major fuck-ups. I will spare you the entire history but highlight the most recent frustrations.
- The last time I called to arrange for out-of-town oxygen, for Erica's wedding in Greensboro, I was told that they would set it all up and then give me a call back to confirm. I never heard back from them.
- On Monday I called to place my regular oxygen order. I had three things to communicate to them - I know that's kind of a lot but I was hoping with careful explanation to be successful: I needed a new regulator that would go to a higher pulse dose, I needed the time of my delivery to be changed from afternoon to morning and I needed to order my tanks. Luckily, a new, inexperienced person answered the phone.
It was immediately obvious that the new person had no idea what I was talking about with the higher pulse dose regulator. She kept putting me on hold to ask someone, then coming back to me: "Yes, yes, we have concentrators that go above 5 liters" No, not concentrators, regulators. I finally convinced her to let me talk to the person she kept putting me on hold to talk to. It was none other than the very helpful Anita who had never gotten back to me about my last travel request.
Anita informed me that if I wanted the new regulator I would have to pay for it out of pocket because my current oxygen prescription was not written to cover it. WHAT??? "The last script we have for you in the computer is from November and says you are only on 2 liters."
This was just insane. I kept explaining to her that Lincare had recently brought out a new concentrator for my home and they would have had to have that higher dose prescription in order to dispense that concentrator to me! But it fell on deft ears. She didn't know what happened to that other prescription (and truly she wasn't even taking the time to listen to my argument) but she assured me that if the doc faxed a new one in she would personally make sure it got into the computer. Aww...I love a personal touch.
After the phone call when the anger of her unhelpfulness started wearing off I realized that, similar to how no one there ever wants to take responsibility for their mistakes, she had taken something that was clearly their problem and made it my and my doctor's problem. It's a first class operation they run, what can I say?
The story does not end here. The next day it became obvious by close to noon that they had not told the driver to switch my delivery to morning. When I called him this was indeed the case.
Later that day when the new prescription was received from my doctor, Anita called to let me know (helpful woman that she is) that they would be sending it out the following day and, while they were here, would also be checking to make sure my home concentrator went up to the proper liter flow amount (again - obviously my argument the day before was not absorbed into her brain whatsoever). Gee, thanks.
So why don't I fire them you may ask? I know...I can't wait for the day. The answer is because I am so close to transplant it just doesn't make sense. After transplant if I do have oxygen needs (hopefully not!) I plan on getting them filled elsewhere.
Without harping on the rehab stuff, I will just say that between my appointments, rehab and phone calls to various medical personnel, doctors and my transplant coordinator I have no time for myself. To think. To do normal life things. The exception is perhaps my drive to and from Durham, itself, though, mandatory. I have no time - or energy - for any of life's other tasks right now. My friend texts in the morning to see if I need anything from Costco after work and I don't even have time to think about what I may or may not need at Costco until well into the evening. That kind of thing.
Of course I am scraping by, but this is thanks to a lot of extra help and understanding from people around me.
* * *
Suffice to say that I have not been in the best mental place this past week. However, even with all of b.s., I still feel like I am coming around more to being ready for transplant. It has really been a mental struggle for me. Part of me feels like transplant is "giving up," and that does not come easily to me. As I said to the shrink this week, "It's hard to lay down your armor when you've been fighting for so long."
Of course anyone who has been through transplant would say that it is anything BUT giving up - there is an incredible amount of hard work involved both in recovering from the surgery and in the ups and downs of infection and dealing with rejection. But it is a different kind of fight than I am accustomed to. It is one in which many more different things - and scary, hard to treat things that aren't all completely understood - can happen than with my old CF wind bags. It requires a leap of faith, and a peace with the fact that everything may not work out as I want it to.
You never know where you will draw inspiration from and what sorts of things will resonate with you when you are going through a difficult time. And so I was a bit surprised to find some very solid and relevant words of wisdom from Rob Lowe's new book Love Life that I just finished reading:
"You can't study the map forever. At some point it's time to start walking; there is only so much daylight."
"You can't study the map forever. At some point it's time to start walking; there is only so much daylight."
I have studied, researched, sought out, met with, asked questions about and read just about everything one can to prepare themselves for transplant. Now it is time to turn off my brain, open my heart, and fly.
Photo credit (top to bottom): splash sun, celestialelf.wordpress.com; woman, pixels.com; summer solstice sun, judithtownsend.com; sun, naturefriendsla.org; tree, society6.com; sun, freegreatimages.com; surya namaskara, theblissblissbliss.com; sun, theindigowillow.wordpress.com.
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