17 March 2012

My Life with Chronic Pain and Dream to Go Home

I am so ready to bust this climate- YESTERDAY! Our life has been nothing short of ordinary lately. It seems that my nerve pain has become widespread, chronic, and is triggered into a more severe pain level with the trigger of rain.

Living with such chronic pain is difficult at best. I have to limit my time on the computer, limit the household chores I do, limit how much I play with Thane, limit everything that has become my identity just so that I can keep the pain level down to tolerable levels.

I've been fighting with MyIPRelay this week over my account that they keep freezing out on me. For some online relay is a secondary phone for them- for me it is my only way to make calls and receive messages. I can't make a lot of calls as it is due to pain levels. I do much better with email communication, but some businesses are resistant to provide that option (including Thane's vet).

I spent the better part of three days fighting with these folks. I prefer Nextalk for outgoing calls but they lost their relay contract with no notice to consumers. Its been over a month and its still not back in place. I tried to set up accounts with other providers, but they either used captcha, the number options were not local for me, or I needed to port my existing number if I wanted to use the service within a short window of time. To port my number would then make it unusable with the provider I had been using once they get their heads out of their asses and stop monkeying around with my account that was all up to date to begin with years ago.

If I had not been in the midst of trying to reach the wheelchair vendor (something I'd been trying to do unsuccessfully for nearly two weeks) all of this would not have made my life so complicated. All the extra crap with the provider to get my account working right again only to have it fail for the same reason the next day and the next quite frankly used up all the spoons I set aside to work on reaching the wheelchair vendor. Since I can't answer incoming calls and the repair department was not picking up when I called, this meant repeated calls through relay for weeks.

Finally flabbergasted with the whole ordeal, when the national office picked up the phone instead of local, I explained whats been taking place to them and imagine that- they got them on the phone for me! YEAH! Not only that, she is going to use email to let me know when the appointment will be so that I can more easily confirm it with her.

Spoons for the weekend are pretty much gone now after all of that this week- not to mention two grocery trips in rain and mud with the sorting and clean up to follow.

I've pretty much decided I have to begin saving for relocating. I have to have a drier climate than this. I refuse to spend the rest of my life in this place because my parents want me closer to them and I opted to move here based on half truths and down right lies about some things. I don't know when it will happen, I suspect I will probably be on dog number three before it does, but I have to have something like this to give me a renewed sense of hope.

When one relies on public transit, needs guided walks to keep their pain in check, must take long trips on transit to get the grocery needs provided, living in a climate where it now rains a good part of the year (8-9 months is common), its time to reverse that decision I made because i was provided with faulty information about my options here. I was also told they would help me get back there if this did not work for me, but that was the rouse to prevent me from changing my mind.

Meanwhile though both Thane and I suffer every year because of the rain and I am fed up with it. Now that most of the heavy duty medical treatment phase is behind us for Thane, I hope to be able to get my budget back on track and save for the process of a move.

 I know that when one is on section 8, the area you want to move to has to agree to accept your case. Its not as simple as me saying I want to rent such and such a place in the city I left. Housing also has some really ludicrous guidelines for making this transition (or any move even within the same county you live in). You have to fist give a 30 day notice to your manager and send Housing a copy. They then have to approve of the move. OK so if your like me, your asking who the heck designed such a system! OK I get your manager should get a 30 day notice, but one usually has somewhere to move to before they give their manager notice, don't they?! LOL

Thankfully I have a friend who has managed to do the state transition twice as well as transitioned within a single state before so I will definitely touch base with her at some stage of this. I just don't see this happening anytime soon with how expensive such a move could be for me. The bottom line is I need to live in a drier climate period. I can't live like this year in and year out. Its time for me to save my pennies. If people knew just how much more money I'd be getting now if I lived in California they'd probably croak. Between Social Security cutting my check over 200 bucks when my Mom also went on Dad's SS (something SS required to be done with me) and this state refusing to give me SSI or any assistance dog special allowance funds- I wish I never made this move.

Some people may think that I am just in one of those funks and I will get used to things once the rain stops (in say 3 more months if I am lucky), get real. I have felt this way from the beginning. Living with MCS though makes this even harder than you can imagine. Its the No friends, no contacts that are MCS safe, no way to check out the area easily because I can't fly, etc, etc. Of course if I land in the same area I left, I imagine I can get some assistance on that end of the transition from people I know there, but the journey to pull it off on the Oregon end will be oh so much fun NOT! It will be a nightmare to put it into place, but once it happens, it will be so much easier for me to live throughout the year. I know wherever I land will have its share of rain, but it will also have more dry than wet. I will choose where I land based on the transit system, location of organic grocery options, location of good veterinary care, etc My biggest concern is the *fight* for accessible formats with housing and their willingness to do reviews by mail. I hear that most areas do in person reviews. I know the law is on my side with reasonable accommodations but I wont say it doesn't concern me.

Through all of these thoughts and ramblings here today though, I have to wonder how things will flow if the transition begins before my third dog. How will things transition in regards to Thane's ongoing care, his permanent waiver (which is btw based on the vet you are seeing at the time- any other vet can choose to not honor it) Its part of why I am nervous to seek out a better vet for Thane as it is here. Of course in California, if I ask a vet for a written script, they CAN NOT refuse. It is law there that they must provide what I request. Of course I've never in my life heard of a month of amoxicillin costing 70 bucks until my vet was refusing and playing games about its being filled.

For now, all this can be is a dream. I know that. I know a few bucks are not going to get me back home. I know its where I need to be though for my own sanity and pain- so here's to the day that I get back home!

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