After a harrowing day without the internet (not the cause of the harrow) I finally can post again! It’s amazing but I mostly slept without the net. Yesterday was epically strange. My need for my plan was ignored by fate,cosmos, whatever makes couches explode… and I became aware of some needs. I also found out what I am doing with the Scooter once I get my wheelchair.
It all started with a strange smell and a wheeze. I kept needing an inhaler. I had to actually call my doctor and get another one as mine was so old it was expired (by two years!). So I haven’t been that proactive with my asthma. I hadn’t realized how badly it was effecting me. Debbie the weekday caregiver had picked up the carpet cleaner from the office. We had figured out how to use it, and we started with the couch cushions. The water was black. I may upload pictures of that but off of a single cushion the entire gallon jug turned black. It took THREE GALLONS with cleaning solution to make the cushion clean on one side. It never made it to the other side…
You see by taking the cushions off of the couch it became clear that my seating issue was not just me. I thought it was because usually sitting trouble is just my back. The couch had lost all recognizable couchiness. So we (well Debbie with me just watching) flipped it over. There was an ominous rattle. This turned out to be the death rattle on my couch. We cut the bottom open, to find out what was rattling and to see if we could fix the wood because surely it isn’t that bad a break? My couch had been slayed, and was carrying stakes thinking my butt was a vampire. It was stabbing me for at least three weeks, and I couldn’t tell. I was one stumble and awkward landing away from serious injury.
The other couch was as bad. I suddenly had no where to sit. Also the living room was coated in spikes of broken wood. I retreated to my bedroom door way and directed Debbie on how to dismantle my computer. This is an act of supreme trust for me and for her bravery. She was terrified. Her hands shook. I reminded her I was right there and if anything went wrong she was being my hands. We turned everything off, hauled my computer to my bed and I put shoes on and moved to the scooter to take the rest down. All 9 HDDs, the Modem, everything went into a biiiig basket. The couch was dragged outside while I did this then I had to lay down from the strain.
Once the house was decouched we had to pause, what could we do ? There was nowhere to put anything right? There was no where to sit. Do I live in bed until who knows? Nope! We moved the scooter to a spot on the wall and set up the folding tables as I had planned for the wheelchair. There was some fine tuning but right now when that chair gets here I just have to move a few things around (two chairs and the scooter) and I can use the net, go outside, whatever I want when I want. The scooter chair is not so bad as the couch had been, though I do have to go lay down a lot more. A half an hour of bedrest here, a lounge there. I feel decadent and spoiled even though it’s that or faint and end up on bedrest for a month.
So I uh have no couch, my guests have folding chairs and my living room is full of tables. There’s SIX of them now. (My tables had babies?) I have the lights and wires run in such a way that nothing is aiming for mayhem, and there is even a spot for my pills and drinks. I also am not nearly as sick as I was 24 hours ago.
I have to buy a carpet cleaner now. I found the one that meets my needs, it’s not cheap. This thing is half my monthly income. However, the benefits are I can steam my floors weekly. This means I can also get rid of the mops which are a health risk for me. I can keep my carpets clean. If I spill there isn’t a waiting list to have the floor cared for. No more carpet mold. I can steam my BATHROOM floor. Egads… the horrors of that bathroom floor. It’s had many a nasty on it and that is just with my living here. Oh and the part that has me the most excited? If my chair tracks in dirt, it’s not a permanent issue! I can simply have the floors cleaned. This is not the exact same model we were using but it has some additional features that are worth the price. I also researched costs and brands, and this is the most bang for the buck.
I am wanting to get a steamer for not floor surfaces as well. The same issues apply. My immune system is so weak that I need to be more proactive. I am still researching them, but some of this is also a side effect of my taking Andrea’s suggestion to check into what others with comprimised immune systems do. The biggest suggestions for people with AIDS and HIV are these steamers and an air purifier. I am researching the latter two for best price vs brand and space requirements but I am going to have to spend some money on my health.
I don’t feel the usual cringe at needing to spend money (though I do have to ask for help with these things still). The knowledge that I will be healthier has me excited. My friend Tweak, who ran the fundraiser for repairing the scooter already set up another chip in, before I had realized the needs. I am going to share the link with you all and if you can help please do, if not no big. I already told my mother and a few friends I want them to work together for my birthday for something on this list, because what is a better gift than health? The chip in is here.
Now on to the best news of the year. The biggest news of the day. The brightest news ever:
1. My scooter will be repaired again at no cost to you or me. I made a deal with the repair shop that if I can repair it myself they will cover the parts. This is of course with the snarkiness of “if we cannot surely you won’t be able to harharhar”. I already know what is wrong with it and I can fix it. I know I can. It will take me about three months of fiddling with some wires but, that’s not a big deal because…
2. My wheelchair has been approved. In 10-14 WORKING DAYS (so really 4 weeks) I will have my mobility restored. I am going to have to pay for one part on this chair that is not covered by my insurance but, it’s a whole 36 dollars. I already have a basket, a cup holder, and I will be making the sunshade work for this new chair so I can run free. The insurance didn’t notify me yet, I actually ended up calling them because they changed their formulary and were refusing me my morphine and my skin creams that keep me from looking like a burnt yet raw hamburger. I used the tactic of self advocacy that I don’t share much to get that fixed, and the woman threw in the knowledge of my chair being approved to sooth me.
2b. The tactic I reserve for only self advocacy? New person in the line of people I must deal with when I am aggrivated is told up front, “I am angry, I am aggitated, and I am tired. I am going to end up yelling at you if we don’t work together, and if I think you are screwing around. Then I have to talk to your boss, and there’s paper work and they watch you closely for at least a month because I won’t let up until this issue is fixed. I will call and ask for you every damned day.”
No one wants to be yelled at, and I try to make it clear it isn’t a threat but an inevitability because I am fraking tired and at the end of my ability to deal with the run around so DO NOT RUN ME AROUND RAWR.
I am so excited, I had trouble not mentioning wheelchairs every two seconds in writing this post. I can’t wait. I have to but it feels like Christmas Eve, and if I am a good little advocate Wheelchair Claus will come and grant me unlimited mobility with shiny wheels and comfortable seating that doesn’t make me faint!