I didn't sleep well the night before. I have a furbaby who is struggling with some unknown something right now and he needed help late into the night. But, we got to the train on time. I haven't gone through the entire process of getting my 'free ride' card but I had my letter of eligibility so they allowed my ride there free.

Once downtown, we ordered our uber to get us to RIC. While navigating the curb to get in, imbalance hit and I landed on top of my walker. I hope this is not going to be the beginning of a trend.

Once there, the girl at the front told me they had a cancellation and my OT was now first, followed immediately by PT. Whew!! No longer 2 hours in between to figure out! Things were looking up!!!

OT was more emotional than anything. Those stupid "How well can you perform..." questions. I have some delayed response to touch on my ankle/foot. I also have some neuro disconnect with my left leg.

PT...ahhhh....PT. What is there to say about PT? The therapist was very nice. A few things he said hit home. Then there was the "There will be pain and tears..." "We have to work on re-building your brain's relationship with your leg" Okay. Fair enough.

In the end, I left feeling as though I needed to wrap my mind around getting up early, sitting on the train for 90 minutes. Waiting an hour for the start of the program. PT, OT and a lot of psychobabble. Then waiting an hour for a return 90 minute train ride.

I realize pain psychology is an integral component, as is PT/OT but if that is all this amounts to, I will be looking into something else. I have had 3 failed rounds of PT and a failed 2 weeks of aquatic therapy all due to no/inadequate pain management on a pharmaceutical level. What makes them, me or anyone think those therapies will be effective with the addition of "Hey there leg, I love you". Like I said, I am not discounting it's importance but there has to be something more. I have been asking for compounding creams for over a year - nothing. While lidoderm patches take the edge off, they don't do anything to get a pain level 8 to a tolerable level. Same with the lidocaine gel on it's own. Yes, I'm sorry, the only thing that has helped has been hydrocodone. Is it enough for PT? Apparently not how I was taking it. I wonder if there is some kind of cross-over that makes the psychobabble ineffective if there is real pain medication involved...?

I'm also struggling with how I can make this work at all with my current mindset. I try every day to pull out some positive. It's incredibly hard to find. OT was talking about finding something that makes me happy; PT something that makes me calm. Both of those things are things I am unable to do, which then makes me more upset thinking about it.

What makes you all happy? Relaxed?

Things that make me happy:

1. My daughter
2. My boyfriend
3. My friendships I've made online through various forums
4. Cross Stitch
5. Listening to audiobooks
6. Disney World
7. Music
8. Gardening

Things that help me relax:

1. Hot baths with epsom salts
2. Music (instumental or ballads)
3. Cross Stitch
4. Listening to audiobooks

There are a few that cross over...but the #1 thing that makes me happy (my daughter) makes those few things almost impossible to do unless she is napping, in bed for the night, or at daycare (when I am usually at work but not now due to a torn rotator cuff). When I don't feel up to doing some of those things like gardening, stitching, or going to Disney World...I like to research them or make plans for the future (like new things to try in the garden, plan my next trip to Disney (or dream trip), plan my next stitching project, etc). When I was at my worst I spent a lot of time planning my "comeback" trip to Disney World when I got better...and I was able to take it a couple years later after much therapy and work...gave me something to look forward to and a reason to keep pushing myself to put in the effort to get better. Gardening was a new thing I got into after RSD set in...I started with a couple pots on the deck and have slowly expanded to perennials throughout the yard. Makes me feel better on the bad days to sit out there or at least in the kitchen and look out the windows at my beautiful flowers. It is important to find those things in your life that can give you joy...be they new things or old things that maybe you have to do differently (like me with stitching) but that you can still get some pleasure from. You need a reason to keep going...or at least I did...and these things help me. When I can't do the things I enjoy...it is harder to cope with the pain.

I just wanted to send along some hugs as I am about to go into Transporter Mom mode and head out. I will have to send you a better message later....

Hi AB,

From here, it sounds like a lot of effort to do this program and I am wondering what sets it apart? Aside from the psychological component (important but achievable by other means) is there anything about it that is substantially different than doing OT/PT elsewhere?

Do they have a Physical Medicine doctor or PM who follows you and can prescribe so you can do the "pain and tears"?

I can see where this is a tough decision to make. You want the care but don't want to wear yourself out or flare either. If they can provide PM that could be a deal maker. Otherwise, you may well be better served with something else. I would call and talk with them and find out what they can and will do for you.

For the record, I still tell my foot that it's doing good and is okay...

On contributors to happiness,

My son, and also my husband (mostly, )
my kitty and the many birds in our backyard,
the squirrel who runs up on the patio to get peanuts,
fresh fun produce, yes produce!, I love Farmer's markets and some farms have fresh box delivery which is like a surprise every week,
splurging on an orchid so I have flowers that last,
playing piano,
praying,
a great read,
being out in the sun,
going on outings, at my worst I carried a campstool to prop my foot on,
okay and sometimes I wear silly character t-shirts from the Girl's department. Yes, I still fit in these if they are the largest girl's size.

Sending hugs,

Thank you both! I am sure I will need continued positive pumps as I go, but this helps me to find some base.

It's been a rough few days. Upon returning home from the long day Friday, my sick doggie got sicker. We ended up taking him to the emergency vet Saturday (neither my daughter nor I were able to lift/carry his 60 pounds down the stairs & into the Jeep, so we had to wait for my son). He is in some stage of liver failure, most likely due to his seizure meds, we were given the option to help him across the Rainbow Bridge but opted to utilized my nursing skills & take him home. He was completely unable to move anything except barely lifting his head. He is now scooting himself across the floor! (I love how the liver regenerates! Wish nerves were as good).

I digress. Just received a call from RIC, insurance authorized the pain program. LP~ there is a physician involved - a physiatrist/pain management doc. The girl who called said I would see the doc at some point as well. Here's hoping there is some pain management something prescribed.

I am not sure what other fabulousness is involved in this program but am keeping my eyes & ears open for alternatives.