12/17/09

It’s official…I am now a lab rat…not a guinea pig, mind you, a lab rat.  The difference is I’m not trying new, untested drugs, I’m donating my blood and (hopefully) being monitored while starting drugs that are already widely in use.

I went to UT Southwestern today and met my now new doctor:  Dr. Ardith Courtney.  She was very forthcoming, inteligent and personable.  She showed me all my MRI films (discs?), explaining and pointing out things (lesions) so I can see for myself what is going on.  It was great to have everything explained so thoroughly.  Like all the other docs, she wants me to go on daily injections (Copaxone) in January.  She is an MS specialist working in an MS specialty clinic at a research university in  Dallas.  Even though it is a bit of a drive, I think it is worth it to be with someone on the cutting edge of all the newest drugs and information about this strange and unpredictable disease.

She said there were researchers who were salivating over my “fresh blood”.  I didn’t realize at first that this was a literal comment!  After my nearly 2 hour appointment with her, I talked with a pathologist doing a reseach study.  He is basically studying T-cells…too complicated for me to break down here…  He took my “fresh” un-medicated blood (9 viles!).  They are going to save some, freeze some, and study/compare it to people on medication.  He expects to start a study in January involving people just beginning a pharmacutical treatment.  We are all hoping the timing will work out that I can be in this program.  Basically, they want to examine the changes that occur in your blood (I think T-cells) as the medication is introduced into your system.  Sounds interesting and would be helpful to future patients.   I’ll be a lab rat for that!

Still sounds hopeful that there will be an oral medication out fairly soon.  That study is too far along for me to participate in, but I may be one of the first to take the medication once it is available to the public.  Hopefully in less than 10 years.  There are lots of different studies that take place at UT SW.  By being a patient there, I will be available and considered for some.

Next month I will go in and have a new brain mri done as well as another t-spine mri.  The t-spine I’ve had didn’t come out clearly enough to really see anything a the doc says I must have something going on in my spinal column considering the symptoms I’ve experienced.  I am also going to get some kind of special eye-exam done.  Don’t know exactly when just yet…sometime in January.

Ken went with me and that was great.  Finding the place was a chore in itself! There was so much technical information it was good to have 4 ears and 2 brains to take it in.  It was a good day all in all.

12/10/09

Oil Pulling.  I think it really works.  Going on week 4 now and I truly think I have averted a sinus infection.  Allergies flared up and it usually progresses into an infection and then bronchitis.  But with the oil pulling, it turned green for only a day and just a little bit.  When I’m super stuffed up, I do the oil and then suddenly I breath more freely and I can blow my nose clear.  Today I knew it had dropped into my lungs and was having difficulty coughing anything up but still coughing non-the-less.  I used the oil and coughed up bits of green gunk and I haven’t coughed since!  Sounds strange I know…

I have my appointment finally at the MS Specialty clinic next week on the 17th!

Thanks for checking in!  I’ve been flying a lot.  And, I did get to paint several days on The Littlest Wiseman.  Over the Thanksgiving holiday, I worked 10 out of 12 days straight including Thanksgiving day.  Now I have a nice little break before I work through the Christmas holiday!  Gee I wish we got holiday pay!!!

11/18/09

Yeah!  They put me back on the paint schedule.  It’s going to be all the on-site touch up since there aren’t any more big pieces but that’s o.k.  I go in Saturday and then a few days next week and the week after.

My left ear has been feeling “blocked” since the end of July.  It’s really weird because it pressurizes just fine on the airplane, but it feels blocked and I can’t hear very well sometimes.  So, my neurologist sent me to an audiologist.  I had a hearing test done and my ears examined and tested.  Evidently, once again, it’s all in my head!  He said I have some of the best hearing he’s ever tested and all my nerve endings are functioning perfectly.  He explained the although the ears function normally, the transmission that takes place in the brain can get it’s wires crossed and doesn’t process things correctly.  Crazy, huh?

Now I’m trying something really weird.  Ever hear of  “oil pulling”?  You can google it.  I figure…what can it hurt?  I’m on day three now and already my sinuses are feeling more open.  My ear is still a bit stuffy but I think maybe it’s getting a little clearer….

Maybe my next doc visit should be to a shrink…  It is all in my head anyway…

11/11/09

Well, it appears I have hit my first wall of discrimination.  I have been a scenic artist for a show called “The Littlest Wiseman” since 1986.  It’s a lovely little Christmas production that includes the Dorothy Shay Bell Choir, other Choristers and the play. The sets are quite elaborate and multi-faceted.  I first painted on the show with a “group call”.  Soon thereafter, I became the main painter for the show with just a few other painters also helping out.

I wondered why I hadn’t heard about this years scheduling yet because we’ve usually had several discussions by now and I thought a new set piece was supposed to be done this year.  When I called to see what was going on, I found out that the producer had “concerns” about me and that the other set piece had been completed in October already.  The TD said he knew some scenic artists he could call to get the work done….he didn’t call me!

Possibly, I will be doing some of the last minute finish out, but right now I’m not even sure of that.  It’s upsetting because I’ve been doing it for so many years that it almost feels like we’ve become family.  To not even get a phone call hurts.

I guess if I’m going to be discriminated against from a work group, this is the best one since it is such a small, once a year job….  I just can’t imagine Christmas without it….

10/14/09

I haven’t written in a while because there hasn’t been anything new!

We spent the weekend in Orlando at Disney World.  We flew out on Friday and came back home Tuesday evening.  It was a great vacation!  I didn’t really have any problems while we were there.  No buzzing, tingling anything.  The only time the buzzing hit was when we were walking through the airport.  I guess we took things pretty easy while at Disney.  It was very hot and humid, unseasonably so.  Ken was having a difficult time with his asthma so we weren’t running around crazy.  We spent time just hanging out and taking in the sights.  I did get a bit tired by the end of the trip but not  exceedingly so.

Now, we are home and working on shutting down the flower shoppe.  We have until October 31 to sell everything off and be out of our space.  There is a lot of work to be done just to get things out of storage and back closets and displayed where they can be purchased.  The next two and a half weeks are going to be busy, busy, busy!

My next doctor’s appointment is Tuesday the 27th…I’ll be sure to check in then…

09/24/09

Don’t know if I’ll ever quite get used to the constant buzzing and twitching…

I just walked across the room bare-foot and had to look at the bottom of my right foot to see if I had a piece of paper or something stuck to it.  I couldn’t feel the carpet on my heel in a circular area…

09/16/09

I haven’t written lately because I’ve been out of town.

Our trip to Vegas was wonderful.  The show went really well. The crowds were cheering so loudly we couldn’t hear our music for our exit bows!  What a great feeling.  I didn’t have any trouble with the dancing even though it was late and I was tired.  But then again it was only a 10 minute set.

We didn’t get a lot of sleep but I did o.k.  The first day we stayed up 24 hours…between getting up so early to catch the flight, the show late at night followed by dinner and then going sight-seeing afterward.  The second day we woke up to take an hour and a half master class.  I was able to dance through everything!  There was only one step that was truly uncomfortable and made my legs go haywire.

We did lots and lots of walking.  Saturday night we even went roller-skating!  All in all I held up pretty well.  That was a good feeling!

I got home just in time to fly out on a two day trip.  Fortunately it was an afternoon sign-in and worked till midnight both days and I was already used to the late hours because of Vegas.  The flights went well…we had really nice people and a nice crew to top it off.  My only distress was the fact that they dispatched an airplane with no running water to wash our hands!  Here I am, serving food to a lady with a mask on, obviously sick and with two other sick passengers in the  back.  I think it should be illegal to be confined in a tube without anyway for people to was their hands after using the restroom, sneezing, coughing, etc. and especially if you are serving food!  O.K., so they had little (and I mean tiny) wipes in the bathroom sink to use but they were pretty dry, not moist.  They could have at least replaced the soap bottle with a true hand sanitizer liquid…  Anyway, I’ll get off my soapbox (soap…haha) and will check in later!  I’m home now and have rehearsals later tonight.

09/09/09

The nurse left me a voicemail today…said my spinal MRI’s were “clear”!

This is GREAT news!!!   : )

Does that mean it really is all in my head?!?

09/09/09

Everything is going pretty well…  Ken and I went to Maryland with some other friends for the Labor Day holiday.  We spent two days at the Renaissance Festival.  I was pretty tired towards the end of the first day but so was everyone else.  Ken said he thought is was my MS but I think it was more the traveling, etc.  We were bumped off two flights before we finally made it in to Dulles then had an hour drive at 2 in the morning!

The second day I wasn’t nearly as tired.  We did take it a little easier.  Monday night my legs were constantly twitching for a good 3 – 4 hours.  Kind of drives me batty but not painful.  Sitting here I feel different things twitching and/or buzzing.  I guess it’s just something to get used to.

I still don’t have results in from the blood work or MRI’s yet.  It may be a while.  My appointment isn’t until Oct. 27 and I might not know much before then.

This is the weekend we go to Vegas for our number in the big show!  I’m packing and getting ready.  We have our last rehearsal tonight….

09/03/09

2 more MRIs done today…one more needle!  We did lumbar and thoracic views.  No big deal, I don’t mind MRI’s.

Dr. Hughes says I have 11 little lesions on my brain and 2 “not so little”.  Hopefully my spine will be clear.

She is giving me a referral to a doc at Dallas Southwestern so I can “get on the list” for any clinical trials that may come up.

We don’t have the blood results in just yet…only partially.  I don’t know when I’ll have those or the results from the MRIs.  My next appointment isn’t until October 27.

I’m feeling pretty good.  I was understandably tired after working two 13 hour shifts the day after working an 8 hour with a 3:45 am wake up!  Anybody would be tired after that.  Rehearsals went well last night even though I was tired.

I’m now packing for a 3 day weekend trip to Maryland!  : )

Have a great Labor Day!!!