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01/03/2012

Happy New Year!!!

Well, I went to the doctor at the end of the day on the 29th. All is good!

The lesions on my brain are still the same…no new ones, just the old ones. There are still 2 that are pretty big that the doctor is watching closely but they haven’t enlarged.

My doctor was very happy to see me. She’d had a stressful day and she says I’m her “easiest” patient and a joy to work with!

The best thing is she told me about a new medication that should be on the market in about 6-7 months: BG12. It’s an oral medication – Yeah! When I got home, I googled it. It sounds great! Seems to work much better than the Copaxone injections I’m currently taking even – Yeah! I am going to start counting the days down. My next appointment is on July 9 with the PA. Hopefully they will be writing me a new script at that time if the FDA gets everything finished. Can you tell I’m excited?!?

2012 is going to be a good year. Happy New Year!

12/09/11

Things have been going great health-wise lately. I think it is all starting to catch back up to me, though.

Last weeks announcement of AA’s bankruptcy filing was like a double sucker punch to the gut. I was horribly depressed for a couple of days until I forced myself to stop thinking about what “might” happen and just get on with what I have today. I’ve been very pro-active about reading everything I can get my hands on as to what is going on.

Add to that all the craziness of the holidays, not to mention the scheduling issues…Can you say stress? Funny, I just got through reading an MS article on how stress and anxiety can cause an increase in MS symptoms, especially fatigue. Maybe that’s why I felt like I was walking in quicksand last night and why all I want to do today is roll over and go to sleep…

Other than being tired, things are good. I go in for my MRI on Monday and will get the results at the end of the day on Dec. 29 when I go in for my doctor’s appointment. Stay tuned and
HAPPY HOLIDAYS! : )

11/2/11

I made it through the month of October! It was truly a crazy, crazy busy month. It makes me wonder how I ever managed to fly full time and operate the flower shoppe at the same time.

The first big event was a 4 day “dance camp” I attended down in the hill country. Dance classes took place in an outdoor shelter: no a/c or fans. It was a hot and sweaty adventure! I am very happy and proud to say that I attended every class and danced to the bitter end of everything. I didn’t have any noticeable ms problems whatsoever! Many “healthy” ladies couldn’t keep up! It was the first series of master classes I have taken since the diagnosis and I was a bit worried about how I’d hold up…and that wasn’t realizing there would be no relief from the heat. I feel like I really passed a tough test. I think I’ll do the parade at Scarborough next year!

I had to take a chunk of time off work for the camp and then a chunk again at the end of the month so I had my work schedule crammed all up together to get most of my hours in. People might think my job isn’t that taxing but it really is! Bad environment (airwise and noisewise), on my feet, 12 1/2 hour shifts, not much rest time, bad food (if any) etc. It really takes a toll on the body. Needless to say, I was completely exhausted not having a single day off the entire month with everything going on.

At midnight on the 19th my friend, Kandis, came to stay with me for the rest of the month. She is living in Italy and had to come back to the states to handle several legal matters and to obtain an Italian visa. We hit the ground running first thing Thursday morning getting a lot accomplished. Friday we had to fly to Houston to the consulate. Crazy, crazy and stressful. On Saturday morning, I woke up with a pinched nerve in my neck. I could hardly move…and…I had a really big show that night! I somehow had some movement back in time for the show and made it through o.k. I was off again flying a 3 day trip the next day.

Well, to cut this short, it is now Nov. 2 and I am catching up on my rest. I took my friend back to the airport with everything finished on Sunday the 30th, then flew Monday, Tuesday. I got home yesterday early enough to take  a nap. I still fell asleep by 10:30 that night and slept through until 9! I’ve been resting all morning and am finally starting to feel back to “normal”… whatever that is!

November should be a much easier month for me to handle. I have one all-nighter fundraiser event I have to attend and I’m a wee bit nervous about how I’ll handle that…

 

I’m just super happy and proud that I made it through October with few problems! Yeah! I feel good!

10/01/11

Hello Everybody!

Things have been going very well for me lately.  September was a rather uneventful month.  That’s a strange thing in my world.

The best part was my (ex)niece’s wedding last weekend.  Not only did I create all the florals for the wedding, I was also practically the wedding coordinator/planner.  I picked up and processed the flowers Thursday in addition to driving the bride and her maid of honor around to get decorations and centerpieces for the rehearsal,  made 6 bouquets Friday after attending the rehearsal and dinner, danced a little ditty at the studio Saturday morning and went straight to a bridal luncheon where we made the centerpieces for the reception, etc.  Saturday evening I made 15 boutonnieres + 9 corsages (Ken was able to help a lot with this).  Sunday was the big day.  Ken went to help set up the reception while I stayed at the chapel handling all the flowers.  The bride and flowers were all downstairs with the chapel upstairs.  I ran up and down those stairs a thousand times…and in high heels!  Everything came out beautiful and the bride and her family was very happy.  I stayed to help with all the clean up after everything was all said and done.   A long, but happy day.

Even with all the excitement and hard work, I felt good the whole time.

Now it is a new month and things are about to get crazy busy again.  Today, I am going to a full day of master classes followed by attending a show.  Tomorrow, I’m dancing 5 numbers in each of 2 different shows at the state fair of Texas.  Show times are at 1:40 and 3:40.  That will probably be a pretty exhausting day.  Parking is usually far, far from the entrance which is far, far from the stage.  I’ll be doing a lot of walking, dancing and standing around with no where to sit down for several hours.  Afterward there will lots and lots of walking around the fair with the other girls.  Wheh!  I’m tired just thinking about it!  We’ll see how well I do with this challenge.  Then, Monday, I have to be off to work at 5:15 am….yuck!

There’s no rest for the weary…on Thursday, I drive down to the hill country with a couple of friends for a dance “camp”.  I’ve never gone to one of these before but it sounds like fun.  There are classes every morning, afternoon and evening Thursday night through Sunday.  We sleep in cabins – probably won’t be a whole lot of sleeping going on…  I’ll let you know how it all goes when I return home.

Better head off to dance class now!

8/24/11

Things have been going along pretty good which is why you haven’t heard from me lately.

I’ve gone to the acupuncturist a total of 3 times now and have my next appointment on Friday.  I’m not sure how much longer I will be able to go…it’s expensive, insurance doesn’t pay and it’s a very long drive taking up almost an entire day for one appointment.  Ken has only been twice because his work schedule doesn’t coordinate well and he’s already dreading the drive and amount of time it takes.  He’s oblivious to the financial aspects!  I do think it is beneficial to both of us and would like to continue.  I just wish it didn’t cost so basting much and wish it were closer to home.

I had about 6 weeks of getting down good sleep habits for the Yaa Halla belly dance convention.  My July schedule had me working late but getting to sleep in late as well.  I’d established a pattern of going to bed around 2am, getting up around 10.  I was pretty solidily entrenched in this pattern while on call the first part of August as well.  Unfortunately, one thing about being on call is no one notices what type of schedule a person normally keeps.  My trip that was due to arrive in around 10pm Sunday night turned into an all-nighter because of mechanical issues (and highly stressful).  That really wasn’t too bad since I’d been staying up till 2 or 3 on my previous trips.  The problems came when I got home Monday morning.  I tried sleeping but the neighbors were having their trees trimmed with chain-saws all morning/afternoon.  When it was time for normal people to go to bed, I couldn’t.  Basically, I fell asleep at 3 and was called out at 5.  It was supposed to be a fairly easy 10 hour shift but, due to mechanical problems again, it was over 12 hours and very stressful.  Now I was completely exhausted!

If you remember from years past, Yaa Halla is a big event at which I am basically the technical director, I sell my make-up, I take dance classes by day and perform in the evening shows by night.  I’ve cut back on some of my duties and don’t “run around” as much as I have in the past but it still is a marathon.  In addition to all that, it is quite a long drive from home so I stay with friends and in hotels.  That means I have to pack for 4 day…workout clothes, costumes and accessories, evening clothes, overnight clothes, and since I don’t get breaks, I pack 4 days of food as well.

So, here it is 10pm on Tuesday night, I’m exhausted and I have all this packing to do plus go to the store.  I need to leave by 3:30 Wednesday for the event.

Wednesday night is way more stressful than usual with all the set-up but we get everything accomplished.  Now, lack of sleep, stress and heat don’t make a good mixture for someone with MS…

My left foot had begun to “heat up” on Tuesday and the tingling was creeping up my calf.  Still there on Wednesday and my legs were starting to feel pretty weak.  Thursday wasn’t so good.  I was very weak in the morning for the first few hours.  I took it easy and stayed behind my make-up table, not participating in any of the classes.  Fortunately, I didn’t have to dance Thursday night.  When the shows were over and I went to my friend’s house, I could barely walk up the stairs to get to bed!  I had to pull myself with my arms.  I did however, sleep pretty good and I had slept good the previous night as well.  Just not a full 8 hours.  I was feeling better on Friday.

I continued to conserve my energy as much as possible during the days and slept as much as possible after the shows.  As the week progressed, the stress lessened as one performance after the other came off without any major mistakes or problems.  I danced some of the class on Saturday afternoon.  It was fast and furious and very demanding so I took about 1/2 of the class and then sat down.  Same thing with Sunday morning’s class.  I was pretty pleased with how well the strength in my legs came back.  I just got a little dizzy and my foot still burned.  I pulled off my solo Sunday night with just a few balance issues that I don’t think anyone noticed.

After the shows are over, I take part in closing everything down and packing everything up.  We were kind of at a lull in the loading process around midnight so Ken and I went to the restaurant where everyone else was for a cold drink break.  About 1 it was time to begin unloading, so we took off to meet the trucks.  I was pleasantly surprised at how much strength and stamina I seemed to still have.  We got home about 3am Monday morning and the event is over!

Needless to say, I didn’t do much on Monday!  I had some errands to run and we had dinner with friends but in addition to sleeping in, a nap was also in order.  Tuesday, I slept in and got started on cleaning up some of the mess created by the event.  Today, Wednesday, I’ve been pretty lazy and slept in and napped and haven’t really gotten much, if anything, accomplished.

I’m off to class now.  Instead of dancing, we’re having a meeting.  I don’t go back on call until Saturday and I should be all caught up by then.  Let’s just hope I don’t have any o’dark hundred sign-ins!

6/25/11

Just checking in…

Last Thursday I went to an acupuncturist.  It was an interesting experience…just call me “Hedgehog” because that’s what Ken said I looked like with all the needles in the top of my head!  I was pleased with the doctor and all that went on.  The only bad thing is it is quite a long drive away.  Ken is also going for help with his asthma, allergies and other underlying health issues.  So you could say we are killing two birds with one stone!  I really think they can help him a great deal.  I’ve been giving blood, etc. for a bunch of different lab tests the accu doc ordered.  So far I’ve come out in the standard range for everything I’ve had done.  Going in to LabCorp Monday for more blood draws.  Haven’t I mentioned how much I dislike needles!!!

Also, went in for my 6 month review with the Neurologist on Monday.  I did see the PA and she was very thorough.  So young!  I drilled her on her qualifications and education…she said everyone is drilling her!  I was satisfied with her answers and liked her.  She was very thorough in all her questions and basic testing.  Nothing new there.  I am scheduled to return in 6 months to see Dr. Courtney and have another brain MRI at that time.

Other than that, nothing new to report.  I’m still getting along  just fine  : )

06/06/11

Scarborough Faire has come and gone.  It went really well.  I felt very good physically and feel like I danced well even in the heat of the day.  All in all, I’m pleased with how things are going MS-wise.  I get a little dizzy when overheated but once I cool back down, things are pretty much normal.  My eyesight gets pretty blurry when I get over-tired but that doesn’t bother me too much.

I still don’t like the daily injections.  My arms were starting to look pretty bad and feel lumpy and bruised all over so I’ve tried cutting back on how often I inject there.  Hence, more shots in the legs and they are looking pretty bad but I rarely wear shorts or go swimming…

The docs office called and said they are switching out everyone’s appointment to the Physician Assistant…So, my appointment on the 20th will be with a PA instead of Dr. Courtney.  Bummer!  Evidently every other appointment is with the real doc.  I don’t know how I feel about this.  I wonder if I’ll be charged the “specialist rate”… Dr. Courtney is brilliant and very experienced not to say thoroughly trained, so I am disappointed to not see her.  I’m trying to keep an open mind that the PA will be also very well trained and highly motivated to do an exceptional job.  I’ll let you know after the appointment

 

 

5/14/11

Making lists, lists, lists!  I’ve been feeling good but I have been exceptionally forgetful lately!

3nd week of Scarborough, I packed the cooler and then left it in the kitchen when I loaded up the car and drove off without it.  Ken had to work later that same morning and his place of business is half way between our house and the faire site so he was sweet enough to drive it down to me…only 1 hour out of his way (30minutes down then back).

The very next week, I managed to arrive at the faire without any of my props!  There is nothing I can use to substitute my sword.  I realized when we were over half way there.  Ken once again graciously saved the day…he drove 2 hours round trip and brought my sword to me on stage only minutes before I was to need it.

The Tuesday right after that was Kid’s Days at the faire.  I had made some repairs on my belt the night before so of course, it wasn’t with the rest of my costume.  You guessed it!  I got all the way down there and realized I’d left it at home.  No, I didn’t call Ken…the girl I was dancing with that day just happened to be my size and just happened to have brought 2 bedlah sets!

The last straw was the 3 day work trip I went on the following week.  I’m super good about moving my copaxone (injection rx) from home to suitcase and back.  The amantadine and thyroid meds, I have to take twice a day.  I have both divided into 2 separate bottles:  one set lives on the bathroom counter, the other set keeps getting traded back and forth between my suitcase and Scarby…yep, I left them in my Scarby bag!  So, for 2 1/2 days, I was unable to take those meds.  Don’t think any real harm was done but I sure had one heck of a strange headache by the time I returned home.  Don’t know if it had to do with missing my meds or all the crazy weather and flight delays.

Anyway, I’m making lists and making sure I don’t forget anything important again.  I’ve always prided myself on being able to pack for 3-5 different events all at one time.  I can still do it, I just need to concentrate a little harder…and, make lists!

5/4/11

Things are going really well.  I’ve danced out at Scarborough Faire one day every weekend for the last 4 weekends and have held up very well.  I was sore after the first weekend but I’ve been fine since.  I’m not as tired at the end of the day as I remember being 2 years ago…Yesterday, I worked “Kid’s Days”.  12,000 school kids came out for a field trip between 9 and 2:30.  I spent the entire time giving “belly dance lessons” with another lady.   We had two 25 minutes breaks and danced the other 4 1/2 hours.  Geeeezzz, I was tired when that was all over.  Glad I didn’t have to work today…I didn’t get out of bed until 10!

04/11/11

Opening weekend at Scarborough Faire went really well!  It was the hottest opening on record I believe.  It hit 90 both days….usually it starts off in the 70′s and gradually gets warmer.  We didn’t have a chance to acclimate this year!

I danced all 5 shows and had no problems  : )

I’m pretty sore today but it’s just because I’m a bit out of shape.  My right quads hurt and also the bottom of my feet but that’s about it…

Looks like the weather is supposed to be back to “normal” this coming weekend.  Bring it on!

 

 

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