Feeds:
Posts
Comments

04/11/13

So….I faxed my application into my doc for Tecfidera on March 29. They received it. I gave blood for labwork on April 2. The results were very good and back in by April 3. I have been anxiously awaiting the phone call from Biogen to set up delivery of my new meds. When I still hadn’t heard anything yesterday, I decided to ask my doc if she knew anything. I was given a number for Biogen to check the status of my application. Low and behold, they never received it! Evidently, my doc faxed in 8 applications at once and 2 of them didn’t go thru…mine being one of them! I re-faxed everything last night, my doc spent quite a bit of time on the phone with Biogen and hopefully, I will get a call soon to set up delivery!!! I am so glad I called to follow up!

I have 1 needle prick left. I’ve been taking my daily meds once every 3-4 days lately. I’m looking forward to sticking myself and all the drama that goes along with it one last time tonight. I won’t miss it at all…I just wish I had my new meds to take in its place!

I’ll let y’all know when I get to start the new oral drugs…it’s going to be soon now, I hope!

3/29/13

Dimethyl fumarate has won FDA approval to treat relapsing-remitting forms of multiple sclerosis and will be sold under the name Tecfidera. TECFIDERA has been proven to significantly reduce important measures of disease activity, including relapses and development of brain lesions, as well as slow disability progression over time, while demonstrating a favorable safety and tolerability profile.

I’m filling out my paperwork! Yeah!!!! 🙂 No more daily needles!

Iwill fill in with more details as I get them. I need to go have my labs done and fill out a bunch of papers and fax them back to the doc. Hopefully I will know more by the end of next week. As for right now, I’m going to go poke myself with a needle…

03/13/13

Boy, I love this date! Maybe today will be my lucky day! 🙂

Not much new really to update…I’ve been working a lot. I went from late sign-in/go to bed super late for a many months until the end of February to suddenly early sign-in/get up super early (actually in the middle of the night: 3 and 4am on top of DST!) in March. It’s been quite a switch I’ll tell ya! Also, the way the months overlap with scheduling, I had to flip flop while covering 6 days in a row with long 14-16 hour duty days and super short layovers. Somehow, I survived. It took me two days of sleeping but I’m sorta back to normalish…maybe…

No real new news. Just heard from my doc the FDA is supposed to meet towards the end of the month to approve the new oral medication BG-12 (with a proper name yet to be announced). The problem is, I only have enough Copaxone to last until the 28th of March. There will be a short time lag between approval, getting my script and insurance approval and delivery to my house. But, if all goes well, I should be popping pills instead of poking myself with needles sometime in (hopefully) early to mid April. I really don’t want to refill the $13000.00 script for Copaxone! Don’t yell at me, I post here for my own personal recording of things as much as to inform everyone and to get feedback so I think I need to put it down here in writing…I plan on shooting up every other day or so rather than every day to extend the life of my current supply of copaxone until mid April. The cost of Copaxone is ridiculous and I am so over the pain of the needles and disfiguration. I just don’t think I can justify the cost! What is a few days going to hurt…it’s not as though I’ll be going cold turkey and without for a prolonged period. It’s not like insulin is in controlling diabetes. It merely slows the progression of the disease and has only a 33% efficacy rate. If you are in remission, there is no progression taking place anyway. I don’t see how reducing dosage for a couple of weeks can really do that much harm in the grand scheme of things…I promise I will take my pills faithfully when I’m get them. And, they have a 55% efficacy rate! Here’s looking to the future!

01/31/13

What a whirlwind I have been thru since Dec 21!

I completely wore myself out. Flew 21-24 then went straight to dinner at the in-laws. Spent Christmas Day in Grapevine with my friends, the Godbey’s. Flew into Tulsa on 26 and drove to KS for Christmas celebrations with my family. Ran all around Silver Dollar City the next day. Tried to fly out of Springfield on 28 but had to rush to Joplin to make a flight. Flew the next 3 days, 29-31. I turned down a dancing gig for that night because I knew I’d be too tired! I rang in the new year with some friends who live close to my home instead. I did enjoy not doing much of anything on New Year’s Day 🙂 . On the 2nd, it was get costumes ready, practice and attend rehearsals for the upcoming Wings auditions. (all current members had to re-audition to maintain their spot). I flew again Jan 3-5 … with lots of very sick passengers and fellow crewmembers! Then, Sunday the 6th was the big day. I had to be at the studio at 11 am for auditions. They lasted until about 9 pm. It was a very taxing day!

Needless to say, I did not do very well in my audition. I was overly tired and even more, overly, overly stressed! It is what it is… Evidently, my moves were not as fluid as normal or as they should have been. After having danced with Isis for over 25 years though, she knows what I am capable of. So, on one hand, I did not make the audition but on the other hand, I have been asked to dance in all the shows we’ve done since! And, I have just been promoted to Assistant Artistic Director of The Wings of Isis Professional Dance Company. That way, if my work schedule is too crazy or I’m having a bad day, I can pull from group numbers and be the director of the show. So far, I’ve been in all the group numbers!

Dancing has been very busy this month! I was invited to perform in Little Egypt’s show on the 12th, I danced my solo show at Byblos restaurant on the 24th, performed in a number in the Bellydance Super Star’s touring Club Bellydance show on the 25th, taught an hour long workshop in the afternoon of the 26th and performed in that night’s Isis Hafla 2 group numbers and a solo! All of these shows went really well and I’ve proven myself that I simply had a bad day at the auditions.

I have a lot coming up, too. I’m dancing 2 shows at Byblos tomorrow night, another again on the7th. I’m dancing in another Isis hafla on the 23 and have been asked to do a special performance for another group’s show at the end of the month.

Whew! I’m tired just typing all of that! At least I’ve had a two week vacation the end of January to recover from all the craziness up to this point. I’m back in the air on Sunday, Feb 2.

All in all, things are going ok. My health seems to be holding and I am anxiously awaiting the new rx: BG12. I decided it was worth the wait. Hopefully it will be out sometime in March. I’m ready!!!

12/21/12

Well, it’s after midnight on 12/21/12 and I’m still here as is the rest of the world. I guess the Mayan calendar wasn’t predicting the end of the world after all!

I went to UTSW today to see my doc and get the results of my MRI I had done a couple of weeks ago.

My MRI came back very good: no new activity. I seem to be holding steady. Evidently that means my meds are working. This leads me to a new delima:

The copaxone injections are very painful and have disfigured my legs. The efficacy rate is about 30% but appears to work for me thus far. I have been patiently waiting for a new oral drug called BG12. Its efficacy rate is over 50% and it is a once a day oral pill. Both copaxone and BG12 are immune modulating. Unfortunately, we thought it would be avbl in October, then December and now they are saying March which is 3 months away. My doctor said if I didn’t want to wait until March to stop the injections, there is another oral med just out called Aubagio that I could begin taking right away. Its efficacy rate is also about 30% and it is uncertain if it is immune modulating or immune suppressing. It also has side effects of hair loss and diarrhea and I would have to have my liver tested monthly in addition to being category X for pregnancy. (not that I plan on getting pregnant but I would definitely have to have an ablation). It is very tempting to jump ship immediately to the oral but I would also have to be on it for at least 6 months before changing to the other oral.

My delima is, do I go with the Aubagio now until July and possibly have side effects and have my liver checked every month for the next six months for the same 30% efficacy rate – or – do I just continue with the injections for 3 more months and then start on the BG12 with the over 50% efficacy rate and no liver checks, side effects, etc.?

Other than “my big delima”, things have been going quite well I think. My left leg still feels “funny” when I get tired. I don’t like standing for 12 hours straight on my feet, but I guess nobody probably does. When I exercise hard, like practicing my dance routines over and over for a period of about 30 minutes to an hour of constantly working, or dancing a 30 minute full out solo set, the nystagmus comes back. I get pretty dizzy and it lasts anywhere from a few minutes to over an hour. It’s more frustrating and a bit annoying than actually debilitating.

Work is getting crazier and crazier. We used to work a lot of 12 hour shifts but would get to sit down for about 5-10 minutes sometime 2 or 3 times in a day. My most recent shift, I never got a break! The new way they are cleaning the planes does not allow you to sit at all…and we used to complain about only getting 5 minutes! Also, they can now schedule us for 14 hour shifts with 13 hours of that being “flight time”. Pilots are only allowed 8 hour “flight time” max (we used to also have that limit) just to put things into perspective. Needless to say, I come home from some of my trips way more tired than ever before! The only promising thing is that it is under review to have OSHA start having oversight over flight attendants. Right now, the airplane is not considered a “work space” and we have no labor regulations. Keep your fingers crossed we get some government help!

I guess that’s all the big updates for now. Have a very merry Christmas everyone!!!

11/03/2012

Hello again!

First, a big, huge thank you to everyone out there reading this and to those who took the time last post to let me know you were reading!  Thank you, again!

Catching up…our big convention and show in August went extremely well.  I was even able to take more of the dance classes than usual.  🙂

In September, The Wings (performing dance troupe I’m in) went to Las Vegas and performed in a show.  Once again, all went really well and I even took a 2 hour master class on Saturday afternoon.  The third week of Sept, my husband, Ken, and I took our first ever cruise to celebrate our 10th anniversary.  Wow, it was fantastic.  We walked so much we got shin splints but we did a lot of relaxing, too…not to mention eating a lot of great food!

My work schedule for September was kind of crazy because I was trying to fit all my hours in around being gone a lot of the time.  I definitely felt the stress of hardly ever being home!  The last Thursday of the month, I danced a full 30 minute solo set at Byblos Lebanese Restaurant.  I used to dance regularly there until we opened our own business.  I was anxious to do a full-length set solo but seemed to manage just fine!  I picked Thursday because there is only one show instead of two and thought I ought to ease my way back in…  I had a lot of fun and am looking forward to my next show.  Unfortunately, I couldn’t get on the schedule for October because AA came out with our work schedules later than normal.

Speaking of October…it has been truly one of the craziest!  But, I get the feeling I say that about every month.  I worked a record number of hours with my trips backed up to each other so I was gone for lots of extended days.  One of the occasions I needed off for was a friend’s wedding that Ken and I did the flowers for.  Although it came out beautifully and everyone loved everything, it was probably the hardest, most stressful wedding I’ve ever done!  First the flowers arrived to the wholesaler in the wrong color (some) and didn’t arrive at all (others).  This set off a panic of trying to find the right ones under a very tight deadline.  Eventually all the bouquets, etc. were finished and in the right flowers/colors just in time.  Then came the set-up…that was a true nightmare.  The hotel dropped the ball in everything they possibly could.  We were able to fix everything but there was a ton of stress, walking, running, sweating, carrying, etc.  I’m glad I had the next day off because I slept the whole day!

2 days later, The Wings performed 2 shows at the State Fair of Texas.  Everything went very smoothly and we had a lot of fun.  I’m getting pretty tired by this point because I still haven’t fully recovered from the wedding!  Of course the next day I have to be up before the crack of dawn to work 5 days straight.  Now it might not sound like working 5 days straight is a lot, but you have to remember I generally work 12-14 hour shifts of hard labor and very little access to food and not much time off between shifts for sleep (and not in my own bed!).   I made it through and crashed again.

I’ve noticed that when I’m overly tired, my left leg feels “different”.  A little warmer, a little tingly, just different.  This has been happening a lot in the month of October!  Also, I can’t see as well when I’m tired…everything becomes very blurry.  I must say though that I love my provigel the doc put me on.  I don’t think I could handle all this without it.  It has really given me my life back.  Before I couldn’t function at all in the mornings…now I still might not like them much but I can be polite and civil in company and at work.

The week following my 5 days in a row, I worked a normal schedule but had extra dance rehearsals for our upcoming Halloween show.  The Wings performed a three act show at Byblos complete with costume contests and zombies dancing gangum style!  That show went really well and I felt really good.  Of course, the next day I went out before the crack of dawn for another 5 in a row!  Yesterday was my last day of the five and I had to wake up at 3:30 am…Uuugggghhhh!  Anyway, I made it home, went to the store, cooked dinner, etc. and fell asleep at the end of the news.  I slept straight through for 11 1/2 hours!  I feel much better and more rested today… of course, I have to get up early again tomorrow for my 13hour shift!

8/13/12

ok…so I know it’s been 6 months since my last post… I’ve just felt like no one is really interested or is reading this. That really shouldn’t matter though, this should be a place where I can keep track of what’s happening and going on for myself, like a diary of sorts. Anyway, is anyone out there? Is anyone interested in what or if I post?

Let’s do a quickie catch up!

March: I took the cognitive tests again for the research study. The short test went great, the long test, I was super tired from work and my score dropped down a little bit in one category. I had the complete eye exam and mapping for this study as well. They said the surface of my eye actually improved a tiny bit and that that is vary rare…I told them I’d been eating a lot of carrots!

April and May was Scarborough Faire. I held up very well. I danced more than I have the last couple of years and even did a Saturday/Sunday back to back. I really can’t complain at all!

June was pretty brutal for me. I was “on call” with work and they totally ran me ragged and into the ground! Super long days, very short nights and not much opportunity to find food. And this is WITH a decent contract that is about to go away… Anyway, I realized I am just not like “normal” people when I have to get up super early.

July, I got to fly most of my month with my friend Tami. That was awesome! We take good care of each other and it relieves a lot of the stress just knowing you are working with a good person who cares and knows the real you.

Also in July, I went to my 6 month Dr. appt. with the PA. She said they still haven’t heard when the oral drugs will be out but that I was on the list to be one of the first, probably before the end of the year! We talked about my “not normal” moments and the excessively tired spells I get. She’s holding off prescribing anything because we don’t want me to be anymore jittery than I already am. The sad news is Dr. Courtney is retiring : ( I loved her as a doc! I will stay at UTSW and the same PA, we’ll see what doctor replaces her.

Very soon after that appt., I fell asleep at a red light. Thank goodness, my foot was securely on the brake and I woke up before anything bad happened. A couple of other similar instances had been occurring at work as well. I got ahold of my PA and asked about a prescription drug I’d seen a report about on Nightline that was supposed to be helpful for people doing shift work. Researching the drug, I saw it was also prescribed for MS patients sometimes. Provigil. Well, we sent in a script and I started with 1/2 pill in the mornings for a week, then a whole pill after that. She has the scrip written for me to work up to 2 pills a day. So far, I’m sticking with only the one. Wow, what a difference! I’m loving it! I can actually function in the mornings!!! I can still sleep at night without problems too, and feel very rested. I do have very strange and vivid dreams, though.

The new drugs came just in time for our big dance convention: Yaa Halla Ya’ll, a Gathering of the Stars in Texas. It is a marathon for me…In addition to setting up the theatrical technical aspects Wednesday night, there are master classes mornings and afternoons for four days and in addition to dancing as much as I can, I have a booth selling my SeneGence makeup during all of the breaks. I’m dancing in the evening shows Friday, Saturday and Sunday. To top all of that off, I’m flying a record number of hours for my job. That’s a totally different story…

Anyway, I just felt like I should try to catch this up a bit. Let me know if anyone is out there…