Texas Day Three

Today was a day of big changes in the calibration of my machine, so it will be interesting to see what the changes will be tomorrow.  I don't feel any different, but then I really don;t expect to for another week or two. Although the sleep program DID in fact make me sleep better. Not quite through the night, but better than I usually do.

The broken wheelchair saga continues. Finilly got a call from the corporate office of the airlines today and they arranged for a loaner chair. (It's only took two days). On top of it it has no side guards and it's a bit small for my big butt, but at least it's a chair.

The weather has been hot and humid, but thanfully we go from air conditioned place to air conditioned place so it's not a big issue.

More updates tomorrow....Herrad...keep those funnies coming! I've enjoyed them.

Texas Day Two

Not really much to report on today. Spent the day at the clinic being testing and the machine re-calibrated to me. I've used the machine long enough now to know that it needs time to work, although the sleep program succeeded in making me drowsy. My back is still hurting but again, this will take time.

The weather here is HOT and humid. UGH. Not a great combination that's for sure. I'm making sure I stay hydrated and in air conditioning.

Well that's it for tonight as I'm still pretty pooped.

Hope your all doing well.

Texas Day One

As promised I’m resuming my daily blogging while I’m here in Texas for medical treatment. You wouldn't believe me if I told you about all the fiascoes that befell us. Just to get from California to Texas. Reminds me of one of those Lucy and Ethel madcap adventures you’d see on a late nite I Love Lucy re-run. From our plane departing from LAX 40 minutes late,( thus causing us to arrive at Dallas 40 minutes late), to only being offered beverage service ONCE with no food for purchase offered, not even a pouch of peanuts! (Keep in mind this flight was a three hour flight).


We arrive at Dallas, tired, cranky and hungry, (I had been up since 1:30 in the morning and my caregiver 2:30 to make the drive to LAX in time to catch the 6:50 am plane). Not to mention our arrival was 40 minutes late. (We only had an hour layover). We had to get to a completely different terminal to catch our connection that was leaving in 20 minutes.

So, we did what anyone rational and in a wheelchair would do, asked for help. Only to have one of the drivers for the disabled carts refuse to transport my manual WHEELCHAIR, which in turn caused us to miss our connecting flight.

Our second, second connecting flight was then changed THREE times due to mechanical problems with a plane, mechanical problems with a gate, and frankly I can’t remember or care less what the third reason was. We go to board the flight from Dallas to Corpus Christi (FINALLY) only to discover that they had assigned my caregivers seat five ROWS behind me. (Before you ask, YES they knew we were traveling together and she was a medical caregiver). At this point I wanted to throw a huge hissy fit in the middle of the terminal. I had had enough of flying the airline “doing what it does best” as its slogan says. Fortunately, calmer heads prevailed (actually I think it was a young male airline clerk who was looking at two middle aged women wearing expressions very similar to the one his mother likely wore when he had done something wrong as a child. He caved).

FINALLY, we’re up in the air…..what else could possible go wrong. NEVER ask what could go wrong. To make a long story short because I’ve now been up 17 hours……it involved the airport police in Corpus Christi, a clerk with a BAD attitude and MY personal wheelchair that had been broken in the cargo hold and two MORE hours of our time. Nuff said?

Soon......Texas.

I'm taking advantage of the holiday weekend to REST. We went to church this morning. It was a wonderful service as the Bishop was here for confirmations and baptisms. We always enjoy the Bishops sermon. He is a truly gifeted speaker and it's clear the Holy Spirit speaks through him. I always have a change in perspective after hearing him preach. Today was no different. Unfortunately, we couldn't stay for the potluck because my back was really, literally, a pain. So home we went. I to pain medication and bed and my husband to the yard to take measurements for a fence we're going to put up. I find myself spending more and more time in bed lately due to pain. If it's not muscle spascity, it's my back.

I'm flying to the clinic in Texas next Sunday ( paindefeat.com ) to get my machine recalibrated. It's long overdue which is why the pain is back. While I'm not particularly looking forward to the trip it's self (I can't imagine how my back is going to tolerate sitting so long for the flights), I'm definitely looking forward to the time at the clinic.


I know that not only will my pain be better, but with a calibrated machine, I expect as last time  there will also be a significant decrease in my muscle spascity and a dramatic decrease in my level of fatigue. I'm traveling with a close girl friend, so the week will also give us an opportunity to catch up and have some quality "girl time" which is long overdue.

I'll do a lot more blogging while I'm in Texas.

Today was supposed to be Tysabri D day instead......

what I was told is that UCLA still has not sent their report to my Neurologist (no suprise to me. After making a patient wait 4.5 hours after their scheduled appointment to be seen, getting paperwork done likely is as much of a priority as seeing their patients on time is). So, we have to wait for their report. He suggested changing to yet another CRAB, to which my response was a pretty adament NO. So now I wait to see what comes first. Another exacerbation, UCLA's paperwork or my next appointment on October 28th. Anyone out there want to start a pool?

Yes, I'm ticked off. One thing I've always tried to be in my blogging is very honest and upfront. I'm not one to sugar coat the hard times or ignore the good ones. Right now I feel lost in the shuffle. UCLA didn't do their job, but neither did my Neurologists office staff. They should have started calling last week for a faxed report. If they didn't get it by yesterday afternoon they should have changed my appointment. THAT is part of patient care.

Who REALLY doesn't get "it"? Them...or us?

For all the bellyaching I do when I tell my husband he just "doesn't get it" ("it" being MS), I have to wonder if he get gets it more than I do. True I'm the one who goes through the shots, pills, cramps, "hugs", stumbles and falls, but he WATCHES. Knowing full well there isn't a damn thing he can do to help. Sure, he MIGHT be able to make things a bit better IF I let him and actually followed the instructions I've been given. Things like "Stay in the chair comes to mind".

I fight aand rail against the disease, often wasting precious energy doing so. While my husband stands back and watches me do it. Knowing full well I'll exhaust myself and pay for it with more cramps, less stamina and more fatique.

So which of us really "it". Those of us living through it or those who stand back and watch us suffer? Which would you rather be? Personally, I'd rather battle this disease any day of the week from my end than watch a loved on go through it.

Then again, I constantly pray for a cure, hoping we're the last generation of those who stumple and fall while our loved ones watch helplessly.