I've been home for awhile, just haven't updated. I'm struggling to stand/pivot after that two weeks in a hospital bed. I'm so mad!! I COULD DO THAT BEFORE. It's been a major frustration for me and my caregivers. I'm trying to get them to exercise me more so I can get that back. Fingers crossed.
I got home the late afternoon of the 22nd. But only because I was transferred to the psych ward, where they are in no way equipped to take care of someone like me. I mean, it was horrible. It's a PSYCH WARD. Not a medical ward. So everyone is able-bodied and can get themselves to the lounge to watch TV, use the phone, get water, etc. All of that was taken away from me - my iPad, iPod touch, cell phone, all my meds that I take on my own (supplements and homeopathic stuff for my restless legs). Nursing Aids are not needed, so no one to bring you water or clean you up after the diarrhea the meds they put you on cause. So after one night of staring at the walls, restless legs acting up, no access to anything or anyone; followed by 3 bouts of diarrhea the following morning, which they attempted to clean up but REALLY don't know how nor have the staff, they decided to tell me I WAS there voluntarily and COULD go home if I wanted. It was a Saturday so there were no doctors around, but the nurses couldn't want me out of there more. (We had all agreed the day before, after my transfer, that I was definitely in the wrong place and this was extremely unfair to me, nor were they equipped for me. Someone made a stupid decision). We could not make the arrangements fast enough. They told me I was "leaving against medical advice" (even though I know they wanted me gone) so no prescriptions would go with me. Since the only thing different was a lousy antidepressant that I blame for all the diarrhea, gas, bloating, nausea... I'm not worried.
So paramedics took me home on a stretcher. Almost two weeks in bed did a number on my legs, so my attempt to stand was met by my sliding onto the ground. Right before my lift died we managed to get me on a wheelchair, and they were insisting they just take me right back to the hospital. NO WAY. My parents, Bob, and Thalia were all here when we screamed that. It's the damn hospital's fault I'm like this in the first place!!
Thalia, my dad, Bob and my friend Shawna managed to get me into bed by lifting and getting creative with my bed height. They plugged in my lift to see if it charged, but it was beeping like crazy so I know that means the battery is shot. This was Saturday evening, so there was no way to move until my dad got the lift fixed or a replacement on Monday. Sigh.
But at least with this being bed ridden, I was able to sit up and use my circulation booster a couple times. I was stretched out and I could roll around on the bigger bed. Monday morning my dad brought in a rental lift, and although Monday is normally a sponge bath day, I asked Thalia to come with Christina so I could get a SHOWER! That was a total of 16 days without a shower. SIXTEEN.
Over the next week we used the lift and exercised me and practiced standing. It's getting better I think, but it's still far from how it was. Thalia is on vacation (beaching it up in Vietnam, well deserved) now until the 14th so Erika is working extra shifts, but she is teeny tiny and can't help me stand. So it's been a challenge. Between Christina popping by more often and my dad's help we've been managing. But it's a really big disappointment to me, that what I did was OH SO SERIOUS to the doctors, yet I'm in worse shape than before, and NOTHING has changed. Because I "left against medical advice" there is no follow up. No addressing the reasons why I did what I did in the first place. Still not sleeping (and since I took almost everything I had, I can't get more for a few days yet).
It is now April 3rd. I'm still working on my stand/pivot. I have to keep reminding myself that with practice and exercise I will get it back, it just takes time. I hope. That's the thing about MS - improvements are few and far between. My muscles don't have the memory they once had, and if you lose something it's usually gone for good. I could kill those doctors. You know, the ones who care more about keeping me alive than having any sort of quality of life to stay alive FOR.
So, aside from working on my ability to stand/pivot, I'm all caught up on my PVR shows and my eating is back to normal. I was pretty sick when I got home, living off chicken broth and burnt toast for a week while the bloating, nausea and diarrhea slowed down. Now I'm back to being constipated, as most bedridden people are. YAY
The Home Care agency has been trying to improve. They've found me one good person, but they still need about 5 more! This morning was a joke. These ladies have been here a thousand times but they still don't know what they are doing!! Saturday should be okay, fingers crossed that who I think is coming is actually coming!
Oh yeah, and my voice never did come back completely. I have no idea why. I'm always hoarse and sometimes can't talk at all! I must have done some serious damage to my vocal chords somehow...? Oh well, I can still write.
