Suspenseful Music goes here…

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!


  1. I’m so excited for you! Is there any prospect of you getting a new couch (do you even want one?)?

  2. Oohh, air filters … we supposedly have a couple at my home but barely use them, partly because the noise bothers my partner especially at night (not me, I don’t hear them πŸ™‚ ) and partly because I never know whether the filter needs to be replaced. I followed the link you had for the steam cleaner and stumbled across some air filters at the same site, including some that light up when the filter needs changing. I’m going to see if I can talk my partner into ordering those, probably after we move to our new apartment next month.

    My partner and I recently placed an order for this vacuum cleaner that’s supposed to be especially good for getting rid of allergens … it’s expensive, though:

    There are some models on the same website similar to this one except that some of the others are supposed to be better at cleaning up pet hair. We don’t have a pet so that isn’t an issue for us, but might be of interest to you. Or you might decide your new steam thing is enough.

    Also see this for info on dyson vacuums:

    Am glad you seem to be finding it helpful researching what others with immune system challenges do.

  3. Yay on the new wheelchair!!

    Ideally we would have hardwood floors (they’re softer than tile or Pergo and have some give to them–I find it easier to stand on them than on carpet overlayed on concrete). But in their absence, a steam cleaner can do wonders, as can an air filter. For a double whammy, buy the cleaning fluid made specifically for allergies–it will neutralize dander and other allergens.

    You could check ebay and see if anyone has any–we have found some new items this way at a deep discount before, though a new one will definitely last you.

  4. I actually used the allergy friendly carpet stuff already, and had to switch to another cleaner that was cheaper. I was reacting to the allergy friendly stuff. (Sometimes I think my body reacts to things for a comedy factor, I swear my dna must have a sense of humor. Water? We need that to live… lets be allergic cause that’ll be hilllllarrrrious!) I found the best solution for me is actually pinesol. I do mean the brand name. It works well and there isn’t a strong after smell, no feet reactions and it made my carpet super soft. It turns out that the carpet in my bedroom is actually PINK. It was so dirty it was almost black. It’s pastel… pink…

  5. Great news, I’m happy for you.
    If I have well understood (don’t forget I’m a french speaking Swiss/French (both nationalities) you will soon looks again like the (great) logo of youre blog (I guess It’s Sprite on youre knees ?)

  6. We steam cleaned ours this weekend for the first time in two years–and it’s closer to cream than brown, though not in great condition since it’s twelve years old.

    PineSol also works for me (brand name). My overreactions to chemicals are a **lot** better since I have Sjogren’s as a side effect of spondylitis–I used to have the terrible time that you do with severe reactions. I’m interested in knowing more of what you’ve learned and am reading through archives as I get some time.

  7. I admit most of what I do is avoidance and preparation for the reactions. I am planning a write up on some of the things that I have found out but it appears that the most effective things are alternative cleaning products. I wonder what it is about pinesol that is so gentle. I also like the smell so that helps. It cuts down on the scent reactions since I am also smell sensitive.

  8. It is Sprite on my knee. I think you understood correctly, and if you ever need a clarification just ask. I don’t expect everyone to speak my language and simply appreciate that you have learned English. Thank you so much for commenting!

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