alittle catch up stuff.

i have been so bad in posting a blog the past few days.  i am guessing that due to the holiday i just ran out of time! 

Let's see.  Feeling really good, but the cold weather has a really negative effect on the movement.  There were one or two times when i just could not fanthom movement.  It is not fun, but the warmer temps do make a difference.  Why can't it be like in the 50's and 60's year round.  Maybe our theory for moving west will be a good one. I have an appointment with the neurologist this Monday, and I have a couple of questions based on the seminars we went to.... we will see.  The Avonex is doing its thing, which is a good thing. 

Dave is doing okay.  It just seems when he over does it, he crashes badly.  Tomorrow we are going to our first New Year's Eve Party in forever.  I am really looking forward to it.  I hope we can find a hotel nearby to crash so that we don't have to deal with the idiots on the roads after midnight.  Granted I cannot drink (a lot) but still being with friends will be nice.  

The volunteer gig is doing okay.  I have pretty much been alone all week as the manger (if you will) has been out sick, and I am not sure if today is supposed to be a day off.  I know I will not be coming in tomorrow since i really want to sleep a good part of the day in order to still be awake at midnight.  (yeah, right).;

 I did do two days on the treadmill last week and felt GREAT.  Gotta get more days in.  I want to join Anytime Fitness in the new year so that I can possibly go in before the volunteering.  I did see something (on Facebook) that three days a week for 12 week improves things.  If that plus the Ampyra will get me back on the roads, then I am all for it.   Just getting back on the roads solo will make me so happy beyond belief.  THe reality is almost here. 

this year's holiday letter

I posted this to my facebook, but I figured I should post it on the various blogs, too.

Holidays 2010

Where does one start?  The good news is that we survived through all the bad stuff this year, and unlike this time last year, I feel much better than I did many thanks to the great team of doctors that I have at University of Florida – Shands.

The biggest bad part of this year is that I was diagnosed (and subsequently treated) with Thyroid Cancer.  Let’s just say the C word had me totally freaked out, but a team of great doctors at Shands did a really long surgery and got the thyroid out.  I had some radioactive iodine treatment (not radiation therapy) which apparently did the trick.  All the subsequent tests show me at the levels I should be.  This is a good thing.   

The next thing we were going to take care of was the movement stuff.  I went to a new neurologist who did the spinal tap I had been asking for two years.  The results were just as I expected = MS.  I am now on treatment for this (Avonex), because unlike my mom, there are treatment options now.  Not that I could see her or my dad giving the intramuscular shots. (The needles are huge.  They are about an inch or two long.)  There are a couple of oral drugs that I will be asking about. One drug, (Ampyra) seems like a winner to me – helps with walking speed. The roads are calling out to me.  My fitness goals for the New Year are a little lofty, but I know I can do it. This includes training again, and having gone to a TNT practice this past weekend just gave me the lift I needed to give me the confidence to get back into it.  It’s been way too long. I am hoping to join a gym in the area to get back into shape.  It is something, but all I really need is GOOD equipment (unlike the stuff in the clubhouse) is local to home open 24/7

On the real negative side, I got laid off the third party job (that I really did not enjoy) but not so much the job, but the medical insurance that we are missing.  I am currently volunteering my time at the Plant City Community Development Corporation.  They are a program (run by the county) that help first time home buyers get a home with training, help and assistance.  We have just finished the Metropolitan Ministries food applications for the holidays and a distribution point for Toys for Tots. The need was very surprising high this year… but it seemed like we did okay for all that came in and asked.

Dave really needs to see a doctor and I was able to find some low cost sources of care.  I just worry that he is always sleeping, and out of it for a good portion of the day. Keep your fingers crossed that all will be okay.  He is still doing mobile notary work and fixes computers for folks in the community we live in.

Good wishes to everyone for the new year, and happy holidays. This year was better than 2009, and I know that 2011 will be great.

additional goals for 2011

Insomnia is hitting again, so i have a couple of thoughts for the day.  Some additional goals for 2011.  Some thoughts on what we are doing on Saturday... things like that.

The main thing is going with a theme that my good friend Graceful Lady has posted is :"living like you were dying". (aka, a great tim mcgraw song) I think this year has truly been like I was dying, Literally.  Although thyroid cancer is something that is easily treated, its still the word "cancer" that is freaky.  I tried to live every moment to its best.  The killer was that 6 months later, I was diagnosed with Multiple Sclerosis.  The love I feel from everyone is really overwhelming.  I haven't moved this well in almost 2 years. Learning to take things one step at a time is so hard, but you know sometimes a song just hits the right notes.

Additional goals, gotta save bits and pieces of money to be able to afford this, but will do the Tufts 10K in Boston withGraceful Lady in October (in addition to Chicago) and then Bermuda in January 2012... again with Graceful Lady. if this doesn't tell you how good i am feeling, then I don't know what to say.

 I am so looking forward to the training session with TNT and seeing my peeps.  I have missed them so much.   Getting involved with TNT and TeamVie and MSRuns is so great, even to do a little at a time, its just been so long. 

The company that makes my Avonex, send over a really good diet guideline.  They offered a really good shopping list, too.  Mostly a vegetarian based diet, low on dairy and things like that, but pretty much up my alley.  Sounds like what I have been doing recently.  Whole grain pasta is on the list.. lots of cheese is limited.  but i can live with that.  i do know that high fat stuff doesn't make me fell good, or move great. kinda of the way alcohol makes me feel.

Stuff.. that I have been thinking about

I did a whole post, and somehow pressed the wrong button, so if you see the same thoughts twice, my apologies. 

I am so motivated by my last post and the goals I have set for myself for the next year.  It is a little tough to be thinking along those lines, but ya know, where there is a will, there is a way. The big thing is not to worry about the little things anymore... just the big things... like hoping that I will not be needing a biopsy when I find out the information about my biopsy last month.

I do have a couple of questions regarding the drug whose talk we went to on Saturday.  The drug is called Ampyra, and is supposed to help with walking speed... if that means a PR in something, bring it on.  It would be in conjuction with my Avonex, as a supplemental boost, but the more to get me "better", be better.  W also found out about an MS Center in Tampa, I am just hesitant to go there, because I saw a physician at that practice, and he gave me seizure drugs, and didn't even consider me seeing one of the MS docs there.  Gives me more confidence in having been seen by someone not worthy and not willing to go the extra step and do the testing.  Sure, the cancer would have still been there, but I would have been on MS therapy for over a year if this was found then. Pisses me off to no end.  .  THe website says something about clinical visits one day a week, maybe I will call and get something  closer to home.  I'll have to call folks and get some feedback on this to see if its even worth making the appointment.


In other news, I did register with the MS society of fundraising for Gasparilla.  Granted its not a lot of $$, but I have to do what I can.  I am SO looking forward to the MS walk in March.  Granted its yet something else happening on summit weekend, but you know, you have to do things for something I strongly believe in is important.  Don't get me started on what some folks are going to say that we are "active" participants. 

In yet other news, I am really worried about Dave. He is always sleeping. I know his blood sugar is really high, but this is so ridiculous that I am almost ready to make him to the ER, except that they would probably admit him and do all sorts of stuff to him... If this is until Saturday, I will do just that.  Yes, having no insurance sucks, but little things are much more important,like making sure he feels okay.

More later as the mood hits me..

Despite everythng...some goals for 2011 goals

i did think about some goals for the new year.  Its ust the motivating factor for me.  Its just really tough right now because I have absolutely 0 appetite,and losing weight.  OK, just a couple of pounds, but for me, it looks like lots more...

I need to do a more intense post, but tomorrow will be the day.  Just want to do this while I have it on the noggin...

>- join the local Anytime Fitness while they have their membership drive
 going to save a few dollars and to also be able to get back into shape...
> - obviously get back on the roads. I am thinking with the first goal and
just general motivation; to do a marathon again. I am steadfast in that goal. At the least a half and get a PR.
> - just keep active and get stronger. Its been WAY too long of being
 inactive; and getting back out there excites me.
> - get very serious on the barefoot running... or at least in vff's

It's always something..

I got my results back from the MRI and Ultrasound I had done in mid-November.  The MRI came back that there are no new lesions seen on it.  This from an MRI that they had from 2009.  This is very good news for the MS.  I got the results back from the Ultrasound, and they initially told me it was clear, but yesterday I got a phone call that I have to see another endocrine person to look at it herself.  They said there was weird stuff around where the thyroid used to be and I may be needing a biopsy around the lymph nodes to make sure everything is still clear.   Scares me, but on the other hand, the fact that my tumor markers are so low, there is very little to worry about.  Still something ELSE to worry about.  On a better subject, moving really well these days, and gonna try to get back on a treadmill this weekend.  Coach to 5K, although really wimpy to me is a  nice way to start....  It's getting really hard being away from family and friends during the holiday season, its a tough thing being so far away.
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