beepbeep 2/21/09 06:00 pm
copied from other blog
One reason I wish dburr, the saint who lets me live with him, could move into the home he will inherit is that I would be closer to a decent hospital. However, if he is going to get work where we are now, then we must stay here as far as I can tell until that work is finished...unless we find a good carpool for him at some point. I really don't want to go back to the hospital here. For one thing, there is no food choice. That sounds trivial, but remember I have to eat every 4 hours or so for the diabetes, and it has to be snacks that are good for the diabetes, and also foods I can tolerate for my various conflicting diets. I pretty much know what I can and can't get away with at any given time, except for the diabetes, and now that I have test strips I'm learning that fast. But a hospital that just feeds you what they give you and on their schedule ends up making me very sick. I got by last time because my mom came up, paid to stay in a hotel, and bought me food!
I tend to lie down when I rest rather than sit. There are a lot of reasons for this, some of which I don't feel like sharing, but some of them are that I have two painful long-standing back injuries and I get arthritis often in the joints at the top of my legs just under my tush. But I have a hiatal hernia, a nasty one, so I sit up partially at least when I am eating, a sort of compromise. I also need water with my food. I don't know why food gets "stuck"...could be a scleroderma-type thing, or Sjogren's dryness, or GERD irritation, or whatever. Remember when guys would go around saying "So many women, so little time..." ! For me it's "So many diseases..." I wish I could collect something else instead. Doesn't have to be men, even. Seashells would be fine.
Because I know what I need, and I don't feel like arguing when I'm fighting for my life, nurses with control issues and I tend to really clash. This is one reason I often just discharge myself early! If I'm with a roommate that doesn't allow for me to sleep (or hello fibromyalgia), or someone won't let me turn the fluorescents off (wanna see a lupus flare?), or I can't choose my food, or have water with food, or sit the way I want to, etc., I will get sicker fast in the hospital instead of better. This is why I am often better off at home if I have someone to help me with whatever it is I can't do. I'm lucky dburr seems to find this interesting instead of annoying. Most people get tired of me basically having to order them around so that I will get well asap and become more self-sufficient again.
At the hospital from hell, Nurse Ratchett (name is from a famous book, young ones) would not give me food or drink unless I sat up straight on my painful leg joints, cos nursie knows best. She tried to get me to eat food I was allergic to but I balked there. She kept turning the lights ON (you have to have light to keep your spirits up and nursie needs the light to see where she is going) and I kept turning them OFF so I wouldn't get a worse flare than I already had. What they made me eat gave me diarrhea and then nursie was angry with me for having diarrhea. The list goes on. Basically I just got my oxygen until I could breathe on my own and then got out of there. The worst part, as far as I was concerned, is that since their phone did not permit long-distance calls and my cell didn't work in their building...I could not contact any of my own doctors, and neither the nurses or doctors would contact them for me!
Given the above and also the accelerating deterioration of our health care system I'm really trying to learn how to treat myself at home whenever I can. It really helps that the greatest doctor in the world, my rheumatologist, lets me email him with questions. If I didn't have to fight with Medicare Part D for my prescriptions and could order and read my own lab tests I would do well!
But this latest bout of illness was tricky. I got a chest cold, and not a very severe one, from my sister when I visited the family for my bro in law's bday. She tried not to give it to me but being immunosuppressed I managed to get it anyway. I have a bad history of pneumonia, bronchitis, asthma, and/or lung lupus following colds. So when I started to have a cough I couldn't stop and chest tightness and pain with breathing, I knew I had to do something, but what? I need an antibiotic when I get pneumonia because of the immunosuppression; I can't fight it off myself. But I don't do well with antibiotic side effects so that's my last resort. Also fighting with insurance for the right antibiotic is so stressful I probably would have blood sugar off the map. As it was the infection raised it to 296. My doc considers "danger" to start at 300. Just squeaked by :)
So I waited on the antibiotic and didn't drive the car in case I passed out and tried to keep breathing deeply despite the pain so I wouldn't go low on oxygen. Even though narcotics suppress breathing muscles I took some anyway so I would not have so much pain and wouldn't stick with shallow breathing. Finally I had chest tightness that my rescue inhaler had trouble opening up (I am not impressed with the new non-aerosol ones btw and I really don't think global climate change is primarily the result of use of asthma inhalers...) so I knew there was some asthma involved. Also, the incredible pain began to break through hydromorphone, which is a pretty strong pain killer. I also got very weak, had chills, was a bit nauseated, terrible headache, photophobia, joint pains...etc. Asthma and lupus in the lungs...both treatable with my least favorite drug in the world. I took my last Singulair sample for the emergency and then bumped up the steroids. I got the moon face back almost immediately. This drug and I are not friends. I've had to drown myself with unwanted water to drink to keep the blood sugar within non-hospitalization limits on the steroids. No steroid psychosis, thankful for that. So if the steroids worked, I guessed right, and if not, I have to get myself to a doc., and probably not one anywhere near me geographically.
My doc says he trusts me to know what amount of steroids to take and when. I'm so lucky to have him. I didn't always have a doc like this. I'm not going to tell the horror stories now because I'm still pretty tired :)
Anyway, I've been bad about checking in with other ppl's blogs, and I'm sorry. The exhaustion sucks up time. I will try to catch up though!
In other news, California has a budget at last...and it made my local state senator even more infamous than he was previously. Sigh. Wrote about it elsewhere.
With the economic crisis affecting all of the folks who have been helping me to survive and the programs and services I rely on, I know this is not a good time to be in precarious health...and there isn't all that much I can do about it. My attitude now is that I really want to live but I am rushing to try and get some things done I really really really want done before my personal bucket is kicked. I know for a certainty that if I end up homeless and try to live in my car or something I won't last long at all. There are probably a million other likely scenarios that could kill me. It's a weird feeling to know that my country has already let a lot of people who had problems accessing health care die, and it doesn't make the news headlines. How I hate Social Darwinism. I have always believed that where you end up in life has at least something to do with where you start out and what happens to you along the way. It's not all controllable by us. I wish it were, and I know what the Create Your Own Reality folks have to say :) , but I don't buy the whole enchilada. I've seen plenty of people try their little hearts out and end up in bad places. Once in awhile, the random lightning strike hits somebody, and they have it tough.
Btw anyone who knew Dee from the subchapter leaders of the Northern CA Lupus Foundation: I just learned she passed away in her sleep, and her family has ordered an autopsy to find out why. My thoughts and prayers are with her family. I really liked her and will miss her. And no one could have been more motivated than Dee to work at being healthy, positive, and self-reliant. No one. I just don't think she got to create all of her reality, and I'm afraid I'm going to be pretty stubborn about this opinion.
Sunday, February 15, 2009
- I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at http://beepbeep.livejournal.com that I've had so long I'm probably stuck with :) My other blogs are here on blogger...