Sorry for the long delay in posts. It’s been nearly six weeks since I last posted. The last checkup happened and everything seemed pretty much the same as the last visit. However, no change medically doesn’t mean that things haven’t been different. Since my last post I have enrolled in Hospice, and things couldn’t be better, really. I know that the word Hospice makes most people get frightened, at least that seemed to be the case when I told my family. I enrolled with Hospice of Southwest Michigan, located in Kalamazoo. In addition to being really kick-ass awesome, it was founded by the Grandfather of two really great friends that I worked with at camp. This hospice is less about the immediate short-term, and instead allows people to be in the program for up to 18 months before they begin kicking them out. So no, this doesn’t mean that I’m dying right now, it just means that they are able to give me really great care, and a lot of convenience.
For instance, HB and I have been fighting with Medicaid about me getting a wheelchair of my own for the last six months. First, it was a month of turn-around on just the paperwork. Then the issue was that they thought I was still healthy enough to not need one. Realistically, I haven’t used a wheelchair much, but, I cannot walk at any great distance. On a really good day I might be able to do a half-mile. Granted, it’s not a very fast half-mile, but I can sometimes do it. Unfortunately, I don’t get a ton of those good days. I use a wheelchair whenever HB and I are out and about, and it’s going to require a decent amount of walking. If I go to the grocery store I tend to use a motorized chair at the store, unless I’m just running in for a maximum of 3 things. That’s my rule. Otherwise I’d get not even half-way done, and my kidneys would be throbbing, and my legs would be very weak. But, I wasn’t even asking for a motorized chair, just a regular manual wheelchair, so if HB and I wanted to go to the museum or something, I can actually go and enjoy myself. Anyway, I did the physical therapy evaluation they were asking for and the occupational therapist said that there’s no reason I shouldn’t have one. That paperwork was turned in, with another month of turn-over time. Then they needed a more specific diagnosis from my Oncologist. That’s as far as we got. Less than 24 hours after signing up for hospice, I received a knock on the door with a delivery of a wheelchair, cane, shower chair, and an additional pad for sitting on. (I can’t sit on hard surfaces anymore, I literally have no ass. Literally. Ask HB.) Voila, it was that simple. Also, I now get my medications faster, and delivered by the Hospice nurse!
Hospice has been a lifesaver. They arrange my appointments. I can have a volunteer to come over and do literally anything from driving me to the store, to hanging out to talk, to shoveling snow. I can have a massage therapist come over with a table and get massages. ON DEMAND. This is awesome! My nurse comes by once a week to check on me, and usually calls every other day or so. She’s helped get my pain management tuned so that I don’t have to take as many pills. She’s also the mom of a friend of ours, so we knew her a little bit before. The familiarity is nice. Sidney is her name. She is fantastic, and takes super good care of me. The biggest relief of all is that I finally feel like someone in the system finally gives a damn about me. I can’t describe how lonely this fight has been at times. I know that I have all of the support (and more) you could ask for with all of you, but I’ve never felt like my care providers actually cared. I felt like a lost cause- someone that they all tried to just pass on because my case is severe and complicated. I can finally say that my health care providers actually take care of me now. It’s like cuddling up with your mom when you were little and you weren’t feeling good. It is so nice to have that feeling.
So yes, I am in hospice, but I’m not dead yet, and I’m not dying either, damn it. I’m living every day that I can, and those days are much easier now. Thanks for reading. I’m planning another best day ever soon. I can’t wait to share it with you. I hope you all had wonderful holidays.
No comments:
Post a Comment