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!

Transition

Lyme negative are the most beautiful two words I have heard since our life turned upside down in June, but they are words being used in reference to Thane!

Its been a very long, hard journey that at times I was not sure which end was up and which down- or if Thane was going to be able to guide in all scenarios when the end actually came to pass- but its happened and he is at my side to stay for a while longer anyway.

A transition like this is interesting. To me, its more like remission as having had Lyme for about two years prior to diagnosis means there is potential for relapse through cyst forms. Cyst forms are able to hide from most antibiotic therapy. I'm not overly concerned since there are plans for a prevention protocol- one element of which can be used both preventatively and as part of a treatment protocol. Its capable of busting cysts as well. The supplement regimen will be continued. Homeopathy regimen if needed since it is about more than just Lyme.

For now though, I'm experiencing something I did not know when, if ever I would. I have the guide at my side that I had way back in the first week of June 2009 before he was bit by the tick, albeit a little thin in coat, but that will come in time.

Now when I head out with Thane, I'm not thinking so much about multiple approaches to deal with my disabilities- Thane is back in top form. There's no more concerns about whether or not he will be able to guide me in all situations. I don't have to think about what the weather is like or if its too late and we might be heading home after dark or any of that.

When I want to head out and do something- we just do!

Of course I've suspected for a few weeks that he was now negative, but having the test results on my computer confirming what I thought to be the case is just awesome.

I have previous experience working a combo trained service dog with chronic health needs. Its not the path I would have chosen for him and its certainly not the path I wanted for Thane. Today though, despite knowing that this could relapse, I still feel this sort of victory in that though we had a long haul to get where we are, it is not going to predict our future or put limitations on the way I live my life with him at my side. It really is a special feeling to have so much be past tense. No more seizures, no more falling off curbs or running into walls, no more wandering lameness, or skin so fragile that a shower causes it to peel away if oil isn't massaged into the skin. This and so much more are in the past and tomorrow is just that- a day when we can do whatever we please without worrying about what symptoms might rear their ugly face!

Boy isn't this just awesome pawsome!

The Status with Thane

Much improvement has taken place in my wonderful sidekick. We are learning how to work with his energy. I'm finding keeping him busy and further training do help.

Presently the only symptom that is identifiable is the hair growth in progress. This is one of those symptoms that just takes time. With as multi-system devastating as it was before his diagnosis. I find this just amazing that we are at this juncture- getting our life back. I am eagerly anticipating his results to follow-up testing. My heart believes they will read NEGATIVE. The vet concurs with my feeling by seeing him.

Its still pretty amazing to me how this can devastate a life- how smart this bacterium really is. I know it will take a while before I will really relax and not be looking for symptoms from any possible cyst forms that took advantage of antibiotic free territory to wreak havoc again.

I'm getting ahead of myself now though- we still have to get the test results that tell us its time to celebrate smile

What it Means to be Five

Happy fifth Woofday baby boy! My lil' redhead Man is five today. It is so hard to believe in many ways- from how could this much time have already passed, to how we actually pulled off Lyme survival.

I thought I would focus this post on what five means to me. See for me, five has some history and very deep meaning.

When Met first began having seizures, with his breed mix and the fact that the storm rose fiercely a couple months after the meds began again, the vets were candid with me. His life expectancy with his breeds and seizure picture was not good. The life expectancy presented to me was five years of age- forget about working career duration. Most reading know how we proved them wrong. I found the K9epilepsy forum and learned alternative ways to work in tandem with his meds. He not only lived more than double that expectancy, but he was working up until he passed.

With my history, it's no doubt how much impact turning five has on me. Its not a negative impact, but one where perseverance can change the world so to speak.

I never expected to be found in the fight for Thane's life and yet this past summer that is exactly where I found myself. I never thought too much about the fact that he was not even five years old when this all came to a head until recently. I began to think about everything we had conquered or learned together as a team, but also about what we would have missed out on in the future had my good friend Sharon at AfterGadget blog not encouraged me to pursue testing Thane for TBDs.

Rather than focus on the heartbreaking journey through Lyme, I thought I would share some of the highlights- some of those special things that we as a team managed to do over the past five years. Some of these accomplishments required letting go both of Met and of the cover of *in training* to trust in the new dog at my side.

Moving on was hard- sometimes harder than I imagined, but putting Met behind us and letting Thane blossom in his work was the best thing I ever could have let happen.

Accomplishments that have special meaning:

December 2007 at less than a year old, Thane stops for car I did not notice
January 2008 figured our way around a road tripod when I couldn't figure the way using my guide cane
January 2008 first short distance timer alert (pre tick bite)
February 2008 first instance of intelligent disobedience
April 2008 Thane Shines!  public access began
June 2008 Thane regularly alerts to my mailbox in a string of 22 boxes
July 2008 Thane works crowds with great precision
July 2008 Thane becomes my guide dog
Sept 2008 We rode Max!
Dec 2008 Thane guides in snow and ice
March 2009 Guide brace gives us more freedom and ease as a team
June 2009 Thane is retrieving
July 2009 Thane woke me when alarm went off
August 2009 Mr Bold and Courageous walked me across freeway overpass in pedestrian walkway
Sept 2009 Manager tells me: *You have done a great job training him*
Oct 2009 first night work
Nov 2009 Thane has learned to tug
Dec 2009 Thane is tugging indoor doors open or closed while homebound in manual chair
Dec 2009 Thane is nudging indoor doors open or closed while homebound in manual chair
Sept 2010 When MCS attack left me almost completely blind, Thane stepped up to plate guiding me in dark to get medical care
Oct 2010 turned off my pain from severe MCS attack in wee morning hours by laying his body right up against mine without any direction from me
March 2011 first distance timer alert
April 2011 Thane closes the fridge with *smack it* command
May 2011 Thane does hard block traffic check saving us both from being hit in middle of crosswalk
Dec 2011 first door knock alert
Jan 2011 first doorbell alert Needs more training for door alert accuracy still

When I look at just a sampling of our accomplishments together, see Lyme receding knowing that we are getting our life back, I wonder just how much more Thane has to do in how ever many years of work he has ahead.

Thane is a great dog who has taught me valuable lessons both as a person, as part of a partnership, medically, and in life in general. The lessons of Lyme and just how it can ravage a body, I could have done without, but every lesson be it in life, in partnership, in health makes us stronger as a team. I guess for that, I am grateful for the lessons and strength that we have endured and built over the past four years together, but most especially over the past seven months

So you see what it means to be five or to make it to five is all about perseverance and ones ability to turn a situation that seems so bleak into one that is not only survivable, but full of life, service, and happiness as well

Now there's a tongue waiting my raw-fed boy for his special woofday meal and oh the day wouldn't be complete without some new toys either grin

Opportunities

When you live in *rain central USA* you take your opportunities to get out when they present themselves. Yesterday was one such opportunity.

I'd been trying to decide whether or not to schedule paratransit for shopping errands when the weekend weather forecast did not match the reality we were presented with. I needed some things for both of us at two different stores- one of which takes about an hour to get there by fixed route.

Then we woke up yesterday to a cloudy day that was staying cloudy. There was no rain in the forecast, but then as forecasts go, they are not always that trustworthy. Needless to say, we set out with the plan to do both stores in one swoop- not knowing when we could get another chance for this again. I knew the following day I'd feel like I'd been run over by a freight train, but I also knew that not taking advantage of a dry day would come back to bite me. We set off for leg one of our journey, taking a bit of a detour due to plant and hedge storm damage that has yet to be addressed by home owners or renters.

For the most part, I've been really enjoying working Thane when the opportunities arise- be it just a walk or real work together for errands in town or in the surrounding cities. Yesterday was no exception. Thane was really into his job, happy and working the way I have dreamed of experiencing again for so long. Lyme really changed things so lately I've really felt like I am getting to know him all over again or in some aspects getting to know him for the first time.

Yesterday was amazing. Other than a small amount of *ice walking* on slick floors, Thane did really superbly. When we left New Seasons to finally head home, I was already beginning to feel the impact of the multi-errand day we were putting in.

Though there were a number of really great things he did as he performed his job, I think the one that means so much to me is his ability to take my words, *I'm hurting*, and change from his already steady pace to be more gentle with the sidewalk bumps and terrain we had to travel. He was just pawsitively awesome.

And today, well it has been raining since we crawled out of bed- pouring most of the day.

Life in the Pacific Northwest

From snow to flooding and uprooted trees, damaged plant life, blocked sidewalk access on narrow streets where the owners/ renters NEVER do their own trimming/ cleanup

Oh isn't access and life just a wonderful thing to behold in the pacific northwest

NOT!

Thane and I managed an outing in town yesterday but boy oh boy did we ever get wet! It was just raining a bit when we took off, but you all know how murphy's law goes now don'tcha? grin

We managed to do the outing, but did not get everything needed because most of the stores are moving away from natural meat to enhanced. It is getting so old! I can't wrap my head around why they keep moving this direction since it certainly is not a healthy move for anyone. Thane can't have enhanced meats- nor would I feed him that crap even if he could tolerate it.

By the time we got home, we were a couple of drenched rats! Thane's harness was so muddy and wet it had to be laundered right away. And Thane, well his rain coat did a pretty good job where it covers. He was shaking his head all afternoon until I finally realized he must have gotten rain in his ears. Sometimes I'm slow to get what he is telling me Poor guy

I am so ready for July or perhaps a trip to say NOLA where its in the 70's I hear.

Let it Snow, Let it Snow, Let it Snow!

We love snow, in case you did not get that drift. grin

The last few days we have had some snow stick overnight, but not the amount of accumulation necessary for playing in.

Thane is so cute with his football in the snow and frankly I was feeling jipped. Snow is definitely something that breaks up the monotony of all that rain we get here in the pacific northwest.

Last nights forecast was pretty straight forward: 1-3 inches accumulation turning to rain around 2AM. Can you read the big SHUCKS about the rain there.

I am like a little kid when it comes to snow. I wasn't so much this way with Met, but with Thane it is different. Thane is just a bundle of energy in the snow. He loves it. He loves football. This energizes my love of the stuff too.  December 2008, the year of the White Christmas, was also our first experience together with snow. It quite frankly spoiled us. We were home bound for about three weeks as every time the snow stopped long enough for anyone to think it might be through, another storm came rushing in. It was incredible!

Last night I was up at 11PM, up at 1AM, and again at 5AM. I checked out my snow, took pictures at 11PM and 1AM, hoped upon hope for it to still be usable at 8AM when quiet time at the complex ends.

The news at 6:30 was not promising. It had turned to rain everywhere they mentioned between 2AM and 4AM depending on the temperature in the city or town. It made me sad to think that the one chance for playing in the snow happened overnight and was going to be washed out before we could have a rip of the football and a springboard jump from this slender, agile redhead Border Collie boy.

Then we got up!

Our town had remained colder than everyone around us. It was fantastically fabulous! I tried to pass the time until 8AM as much as I could. I had to hope upon hope that the people on the corner who were fumigating us with their fabric softener at 7:15 would conclude and the air would clear out enough for our pleasure.

And then 8AM came!

Out the door he went.

First a busy

Then a sailing football sent him into action and it was so completely awesome! He jumped one way then the other- this way and that- jumped high, ducked low all to catch each sailing football as it was thrown through the air.

No rain in sight yet for our little town. Cold had settled here to stay for a while longer

Each time the ball was snatched from the crisp air or collected when it fell to the soft white fluff of covered earth, it was raced back to my hand with lightening speed. After tapping the football on the door frame to release the snow from its grips, it was thrown once more into the air, sailing until *snatch* it was collected by this energized redhead.

It was incredible!