Wednesday, September 30, 2009

Finally Fall...

It looks like summer is finally over and Fall has arrived. Today's high was only 64. Hopefully, the cooler temps will mean my MS symptoms will ease up and I'll stop having the awefull bouts of muscle spascity I've been experiencing the past few days. To me, the pain of the muscle spascity has been the worst part. I can deal with anything else except pain.

With the exception of the spascity and fatigue, I've noticed some pretty good improvement with the rest of my MS symptoms since I got my machine recalibrated. My balance is better and I don't seem to be having as much trouble getting words out.

I had a conversation with my primary care physician (I have a great PCP. She actually called out of the blue to check on me and in the past she has actually made a few house calls. Almost impossible to find MD's that do that here anymore), she thinks that the fatigue may indicate an issue with my thyroid so this morning I went and had some labs drawn. That's all I need. Another health issue. UGH. I won't worry about it though.

I've decided to start venturing out of my cave and mingling with other human folk. So, I signed up to take a machine quilting class. It's a one day class and it's something I've wanted to learn how to do. I've been hand quilting for years, but with the vison change that my last exacerbation brought it's too bloody hard to see to thread a needle! With machines that thread themselves, all I have to do is keep the seam straight as I'm piecing it together to sew. Seems a lot easier. The class will reveal if it actually is. Who know's maybe I'll actually decide to take up sewing again.

All in all, things are going pretty well. I just hope the cooling trend in the weather stays put and summer is really over!

Saturday, September 26, 2009

Believing and beating back.

I'm still using the machine several times a day. I actually went on a very short walk with my husband this evening just using a cane! Of course, the pace was that of a snail and it was only half a block, but it's a heck of an improvement.

Now, I'm sittting in the family room nursing very sore legs and savoring the victory! Makes me once again believe that this disease CAN be beat back. I hate this disease. I hate what it's done to me and my life. I hate what it's done to some of m fellow bloggers. However, I choose to turn all that emotion into internal strength. Strength that I am determined to use to fight this disease and help motivate others to do the same.

I believe that BELIEVING we can overcome this disease, beat it back, is the first step in really being able to do so.

Friday, September 25, 2009

Finally Friday

Yeah, Friday is here and the weekend is upon us. Time for relaxation and of course football! My favorite time of the year is fall when football season is here. I just wish the weather would start cooling down. I can't believe it's almost October and it's still in the upper 80's here.

I'm continuing to make small baby steps of progress everyday. My balance is better, so I'm able to get out of the chair at home and wander about on shakey legs using a cane. (I'm going to visit Tara's cane site. Mabe I can find something snazzy). My fatigue level is still high and stamina level low, so I'm in the chair if we're out and about. I'm using the machine every few hours so my down time between tretments tend to be busy. I try to squeeze as many tasks in those few hours as I can (getting my nails done, visiting friends etc.).

I'm looking forward to my Opthamologist and Neurology appointments next month. Tysabri is still on the table and my eyes definately changed after my exacerbation. As it's been almost 6 months, I think it's time for new glasses as it's not likely the sight I lost will be coming back. (Thank goodness for glasses).

Texas, once again, proved to be time and money well spent.

Monday, September 21, 2009

Home from Texas

Arrive home this morning at 1:00 am Texas time. Stayed up to run my programs and then crashed.  Didn't want to get out of bed this morning, but forced myself up so I could get the morning programs run. I'm on an every three hour run cycle. It takes about an hour and a half to run the programs, then I do it all over again three hours after the last program ends.

It's hard to see any difference today, but that's because the travel yesterday kicked my hind end. Prior to yesterday I was getting a large amount of relief from my back pain. It's not completely gone, nor will it be until the problem is fixed, but it's as huge improvement. My balance is also better. Although I will still require the chair, at least I feel a lot safer to wander about the house without doing a facer.

The insomnia and energy level issues will take a little more time. I'm planning on heading back to Corpus Christi in January for another re-calibration of my machine. Then, I will be staying for two weeks instead of just one.

If you are interested in learning more about the program go to and look for the MS video testimonials.

Thursday, September 17, 2009

Texas Day Four

I didn't blog last night because I was just exhausted. Combined a day of treatments with a day of shopping. (The exhaustion was worth it though)! I had actually slept all night (yeah) the night before and was full of energy. I've started seeing improvements in both my balance and back pain. Both are still issues, but at least were moving in the right direction.

Last night on the other hand....yuck...I've been awake since 3:30. Makes only 4 hours of sleep for the night. On step forward, one step back. Insomnia is a tough bird to battle, so is MS for that matter.

The weather since we've been here has really been HOT. Temps in the upper 90's (99 yesterday) and humid. I gave up on putting makeup on. Just mascara. Why bother when the humidity has it gone if your outdoors more than 10 minutes? If feels like a sauna here. No rain or thunderstorms yet.  In fact the sky has been absolutley clear the entire time we've been here.

Well, I'm iff to grab something to eat. We're going to visit family of my girlfriends tonight so that should be fun.

Hope your all well!

Tuesday, September 15, 2009

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.

Monday, September 14, 2009

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.

Sunday, September 13, 2009

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?

Sunday, September 06, 2009


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 ( ) 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.

Wednesday, September 02, 2009

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.

Tuesday, September 01, 2009

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.