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Felt kinda poopy this week. I'd been having a lot of down days the last few weeks and I knew that I needed fluids but kept putting it off. Yesterday, after three days of feeling really draggy, my heart rate started shooting up when I got up and my blood pressure was funky in several different directions. It was time for a trip to the ED for fluids.
I took a Klonapin to help chill me out (knowing that I'm doing worse and knowing I'm going to the ED again makes me a little jittery, plus, Klonapin usually helps bring my HR down a little). And dad had just gotten home, so he drove me there and dropped me off so I wouldn't have to drive while I was feeling funky.
They got me back right away (they weren't flooded and chaotic like last time I was there). And even though I always baffle people with the EDS and accompanying cast, things usually go pretty smoothly.
I was more dehydrated than I realized - starting the IV wasn't as smooth as it usually is. I told her where I had a good vein that was a little deep, but still strong and out of the way of any joints. She got the catheter halfway in and did my blood work from that, then when she tried to advance it further (we both felt it wouldn't work) and flush it, it blew. Bruise number one.
Second attempt was in my hand. Even though my fingers move around a lot, I still don't have major problems with the back of my hand (compared to wrist, thumb, AC, joint-y places). Again, tried with a small catheter, but the vein was just not plumping up or holding up well and it blew. Bruise number two. Ouchie.
So I gave in and let her use the visible and easy vein in my AC space. I realize that it's easy to just start there, but putting them there usually results in not moving the arm and subluxing as a result. Luckily, she was able to shoot high enough that I could still move my arm a bit and still dump fluids in quickly (my body sucked it down). Bruise number three, but at least that one was successful.
She was very understanding and I felt bad for her for having to do so many attempts. After the second attempt failed, she was about to get someone else to come in and try, but I know what that's like. It was easier for everyone to just do the AC stick and get it over with.
And my fluids went VERY quickly. Under 45 minutes for the first liter. And I got a shot of Zofran so I could drink my gatorated (another liter) and nibble a salty snack. I still hadn't peed by the time the first liter plus gatorade was in, so I asked if we could hang another long enough to make me pee. It only took about 300mLs of that one. I peed, I felt better, I got to go home.
The physician who saw me last night has seen me before. He's very kind and understanding. We made jokes about me being a junkie for that normal saline. I'm glad he's able to joke with me about it, because I can't imagine what it's like to be a physician who doesn't really know much about what's going on with a patient who is asking for specific things (but I never ask for drugs, so that helps).
And I did tell him that I planned to ask my fab PCP about a script for routine fluids at an infusion center to help prevent these crashes. I'm really really hopeful at this point that we can read some lit together about IV fluid treatment for EDS/dysautonomia/POTS/chronic fatigue/chronic pain and come to an agreement about how this could help me. Get me into an infusion center at least 2 times per month, but maybe even as much as once a week. And if that all seems to make a difference, go for putting in a port and doing treatment from home with home care assistance and delivery (home care nurse to help with accessing the first few times and observe me accessing my own to know that I'm doing it right). I would love to be able to get a port, get my supplies and fluids delivered to my house. Infuse every other day or so from my own home so I'm not wasting energy and time to go to an infusion center, and hopefully just find that I have more energy and feel better more often.
I realize that it would cause some restrictions and some problems along the way - travel would be more difficult with supplies and making sure I had documentation for anything if need be, making sure I always had time to infuse no matter where I am so that I don't have crashes, etc - but I feel at this point that the benefits far outweigh the risks and I'm hoping everyone involved in my care will agree. I know I'm a long way from there, but I'm willing to do whatever it takes to have the best days possible.
I have this disability, it does NOT have me.
Feeling well today though. And I'm so glad because it's girl date night with Megan! I love being able to get out and do fun regular things with her. We're going to head to the mall to Lush for some beauty and pampering, and then to a movie (Step Up Revolution! YES!) and then dinner at Cheesecake Factory, because I've never been and this was Megan's birthday gift for me (we just keep getting setbacks and wanted to make sure that when we went, I was feeling very well to enjoy it. Bless her for being so patient with my body's unpredictability). So I'm looking forward to a normal Friday night out with a girlfriend!! This is what I work so hard for each and every day - to get these good and normal days!!
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