Well here we are 7 months since I've accepted the fact that I need a wheelchair. (And, here I thought that was the hard part!)
Fast forward 3 months to when I began the process of acquiring a wheelchair...
And now 4 months later, I am still without a chair. I am assured that the wheels are in motion, (no pun intended) and that my chair should be approved and delivered sometime within the next millennia. No, seriously.
I pride myself for being a patient, understanding, and logical person, but this is getting to be quite ridiculous. I fear that I am now doing significant damage to my body by forcing myself to stand and walk the very little amount that I do. But hey, what the heck else am I supposed to do? I have no choice but to sit on my ass and wait. I cannot count the times we've said, "if only I had my chair, I could do this, or go there." The reason it's taking so long is that because my body is not strong enough to use a standard drug-store/hospital wheelchair, my chair must be custom built to my body. It needs to be ultra light, due to the weakness I have in my hands, wrists, and shoulders, as well as being light enough for me to maneuver without over exerting myself and passing out. These types of chairs are very expensive and require a tortuous amount of paperwork to be approved by insurance.
In the meantime, I've been totally worn out. In April, I had a Power Port surgically implanted under the skin in my chest that is attached to a catheter that is then threaded through a major vein that leads to my heart. This is pretty amazing. It allows me to administer IV medications without having to go to the emergency room to get an IV peripherally inserted in my arm.
The surgery went unbelievably well. I was under conscious sedation and was talking to the surgeon while she was stitching me up! I had almost no pain at all after the surgery, which was surprising. I am however having a heck of a time with itching from the dressings. I must be allergic to the adhesives. I've tried 3 different kinds.
My doctor coordinated with a home health agency to have a nurse come to change my needle and dressings every 7 days. I also have an occupational therapist who comes to help me do some light strength-building exercises for my hands and some breathing techniques and I am just starting to learn some basic chair yoga!! I did have a physical therapist come but unfortunately the exercises that he had me do made my legs and joints (excruciatingly) worse, so I'm holding off on that for now.
I completed one month of IV antibiotic infusions twice daily while simultaneously doing IV hydration. I then switched to an intramuscular injection of antibiotics and have also added more supplements and herbs (none of which are covered by insurance) to my treatment plan.
I've invested in a phase-change cooling vest, with help from a generous donation. I cannot even describe the world of a difference the vest makes on a 113°F day when I have to leave the house to go to the doctors. My only complaint is that I didn't get one many years ago! (More about my vest later!)
I started doing castor oil packs sporadically, with hope of easing the stabbing stomach/intestinal/liver/gallbladder? pains. I've heard miraculous stories about castor oil packs, it was something relatively inexpensive that I could try. I would like to do them more often to see if I get any benefits.
The next "big" thing I am going to try is coffee enemas. I can't afford not to try them! I've been doing a bunch of research and they really seem to help a lot of different things. Of course, I'm apprehensive to try this because of how sensitive my body is with any sort of caffeine, so I am going to ask my doctor at my next appointment in a couple weeks if this is something that would be safe for me to try. I also want to make sure that I know exactly what I'm doing before I go ahead and stick something up my butt. (I'm sure there will be a whole separate post on coffee enemas in the future.)
I'd love to hear what has made the most difference in your health and/or quality of life or piece of mind. 💚
No comments:
Post a Comment