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.
.

Holiday wish list

This year, my list is really simple.

-no major health concerns to happen-
-begin training at a level that I am used to
membership $$ to join a gym.. I would prefer NOT in my neighborhood, but the anytime fitness will do.  I will NOT rejoin  the gym i used to belong to.  i was never really happy there, just for the spin classes.  Yeah. I know there are no spin classes at anytime fitness, but i think i will attempt a class or two at soho, the studio in town
- material gift.... concert tickets to Kenny Chesney/Zac Brown Band/Billy Cuurington
The positive part is that tickets to that are comkparable to the Strawberry Festival.  We may add in a local hotle stay so that we don't have to worry about getting home in all that traffic.

Thanksgiving and other stuff

This Thanksgiving was really good.  We had a good meal that I was able to cook pretty much on my own.  HUGE difference from last year.  Avonex must be doing its thing.  That is (besides Dave as well as great friends and family) one of the things that we are so thankful for.  Its amazing how one little shot can make such a difference.  I wish that my sense of taste would come back.  Stuff I really used to enjoy tastes like cardboard..  I am guessing this is one of the things that come with having the radioactive iodine treatment.  A small price to pay.

On a plus side of things, we got new laptops at a really good price at a local place that just fixes and sells them.  We don't need all the extras, as most of the things can be gotten, or we have them somewhere. 

I have to start the Christmas card list and letter, something to keep me busy for a while! There is a bunch of stuff to talk about.

On another note, I think that the dream of a 5K at Gasparilla will happen.  I revised my goal to the 8K

A busy January to March

This self injection with Avonex is going really well..  I have been moving about  good.  I was able to get around  at Shands post MRI with no  assistance. Granted I was tired and a little dizzy, but it is more than I have done in a while.   Looks good for Gasparilla this year.  Cannot wait to see everyone this year. Just going to be very interesting with a convention in town the same weekend.


March -- March 12 and 13 specifically are going to be whacky.,  Not only do we have the Region Two Summit during the weekend, but there are a couple of concerts at the Florida Strawberry Festival that weekend.  PLUS there is an MS Walk that I would love to participate in, a doo wop concert at a Plant City hotel that Dave would really enjoy.  do we want to really spend a weekend with Fleet folks, or really enjoy ourselves with good music.


The following weekend is the Kenny Chesney/Billy Currington/Zac Brown Consert at Raymond James Stadium that will be lots of fun.  Nothing like a great concert in a seemingly great place.  One way to NOT go to a football game in that stadium, is to go to a concert there.  Looking forward to the tailgating events before.

Good Hopeful Weekend

This weekend was good.  We went for a walk on the Van Fleet Trail this morning.  Still not great, but we did about 0.5 more than last week in 4 minutes quicker.  This is a very good sign.  Want so much to get back out there on the roads.  Its conforting to know that the end of this nightmare may really be over soon.   The conforting part is that I really do think that the Avonex is really helping great deal.  I know don't put all the marbles in one basket, but when something that was as easy as a prescription can help me back on the path of marathons, that is a good thing.

On another note, I have to go to Shands tomorrow for another MRI.  We were putting all the reports together for the docs there so that a comparative report can be written.  We also found the CD's of all the scans so the report can be accurate.  The scarey part is all the talk of "white matter" that is a big factor in MS in a few of the reports.  It took Tumor Study that another doc did who said the radiologists at her talk said the white matter looks like MS... Another reason why it is a good idea to go somewhere else for treatment.  What kills me two years later that if the neurologist who saw me did what I asked (the spinal tap) and got me diagnosed then.  I cannot imagine how much better I would be now. .  BTW:  I had at least 20 MRI's in a short period.  Makes me wonder if that radiation had a factor in the cancer.  I don't think so, but it is something that i will research.

More good stuff

The feeling of health is really very weird.  Just within that short of  a time doesn't make any sense to me.  I just want to get a real job so badly.  I am thinking that there is nothing really out there.  I saw an ad today that I will send/fax and application to.  One of the jobs would be so perfect for me, because I've done some of it before when I was temping in NY.  The other is not that foreign to me, and I am pretty sure that I would be able to do it easily enough.

We are walking more and more and its a very good thing.  The extra walking is doing me a world of good, and my thoughts of perhaps doing a marathon in the next year may be a reality

Update...

I'm at the 5 week point of taking the Avonex.  And I have to say that the way I am feeling is amazing to say the least.  I don't have the stalling nearly as much.  I would say once every couple of weeks.  The volunteer gig keeps me moving, and the days that I am NOT here, I really feel it.  It shows that moving is going to keep me active.  We go to the Van Fleet trail once a week for a walk.  We are going to go for about 4 miles next week, and that will be good.  Its a little trail that is sorta kinda a straight paved trail, with the trail on either side of us.  Polk trails are different that Hillsborough ones -- for one the Polk ones are free for now -- but there is NO facilities at the trail head the way some of the Hillsborough ones do or water along the route.  Still really nice in the middle of FL to have that sanctuary.  We went to a MS Group seminar on Friday where one of the speakers spoke about another drug that I need to ask about.. it is called Tysabri.  Once a month infusion.  If we have to go to Gainesville to get it done, OK.. I would rather get it done in Tampa

I learned to not get stuff done in my neighborhood lab because they said they ordered a Tumor Marker test, and they ordered something else.  Just really sad.  Especially when I knew they did the wrong thing based on the tube color when I had the test repeated at Shands.  I hate incomptencies. If it were for a "normal" test, then I would not worry too much.. but for wsomething specialized that was on the form, then no.  I would rather go to the nationwide lab across the street from the hospital and get it done there where they KNOW what they are doing.

Thank you, Mary

Thank you.. 10/15/2010 0 Comments   Edit | Settings | Delete Are you sure you want to delete this post? This action is permanent. Yes, delete postNo, keep post A huge thank you has to go to Graceful Lady.... aka Mary... for giving me more strength than I knew I had. Today was a good day.  Had the busiest day that I could have imagined at the Volunteer gig; finished the project I was working on.  The meds I am on are working.  The person I am worried about Is Dave.  He is at times really out of sorts.  It worries me to no end.  He has to be OK for me. I have seriously decided on Gasparilla as my comback.  Its about 4 months away, and I can do it.  The marathon is in a year and I can do it....  The cool part is that there is a convention in town the same weekend as Gasparilla.  I don't mind if my running friends meet the Haven folk esp since they are all educated and mature.  The rest of the gang (save a few folk) are questionable. Insomnia is still an issue, but between that and the night sweats, I am thinking its more menopause than the MS.  I will eventually go see my GYN for just a general check up and find out what is happeming....

Continuing Nutty thoughts

I really am still wanting to do a marathon next year.  Based on how am moving around, this may become a reality.  Wish we still lived in Boston so that I could Tufts on Monday with friends.  This was one of my favorite evens when we lived there.. Sure that it is better today! I am SO anxious for everything to kick in so that I really want to join a real gym and go from there.  Workouts are so in my future... its been way too long. 

The diet really makes a difference.  I can feel that no alcohol is making a difference, as little as we drank.  It getting rid of the red meat that may be a little difficult.  I don't eat a lot of it to begin with, but just to get rid of it totally will be tough.  The last step will be dairy.  That may be the hardest, especially since cheese is such a huge part of my diet.  I must that Jen from TNT on sending me the about.com site with great recipes and ideas.  I need to try a bunch of recipes from there, and even though it may be a little bit of a gradual change to become vegan its gonna be worth it for my good health.

I am currently in the process of creating a new website. It really reflects me more than ever; centering on my running mostly and other things (Dave included) that I love. 

The volunteer gig is going well. I really wish this was a paying "real" job, because the people there and what they do is something I relly believe in.   I guess that is the most important thing right now is getting better and fulfilling my goals.

Nutty Thoughts

OK, this is getting really scarey.  I cannot believe how good I feel.  Dave is even noticing it.  I can walk around stores on my own without really any help.  I haven't been able to do that in almost 2 years.  I still think it has something to do with the mental state of mind of knowing something.  The injections are gonna be weird, but I can do it.

Something is definitely wrong with my state of mind.  I will do this, but it just seems so far fetched from something that I did not even think would be possible, even a few months ago,  I really want to do a marathon again.  Some friends are talking about Chicago next year.  That would be so cool.  The trick though is increasing my mileage.I am going to do a volunteer gig in Jacksonville in February.  This will really tell me where I am fitness wise.  The fact that I am thinking like this makes me happy.

The only sucky part of what is going on is the insomnia.  3 hours at a time of sleeping isn't good.....

Feeling really good

I can safely say that if this feeling continues, the marathon dream nex year will be a reality.  The only side effect of the drug is that I had night sweats and a low grade fever last night.  I can deal with that.  Today, I was able to move about really well almost on my own.  This gives me lots of hope for really doing well going forward.  I *know* that my dream of a marathon in the next year will be a reality. 

On another note, why am I feeling so damn good, better than I have in two years?  I think my positive thinking and lots of love & prayers from my friends are helping as is lots of prayers from tons of folks on the outside...

Nervous about Injections

Just getting a little bit nervous for my injection training later today for the Avonex. On a positive note, I was pre-qualified into their program to get this drug at no cost.

I was finally able to get dave into the Florida Discount Drug program where some of his more expensive drugs are cheap. ANd he said he will go into the clinic to see if he can see a doctor for some new scripts and samples of some of the drugs he is taking. I have to call Shands to see about their program to see what I need to do for their care and if Dave is allowed to use it too. Plus he said he would look into the employflorida list for work. There a couple of jobs in the schools that seem good for him.

Thank you to everyone for the warm thoughts. They really help. I am still really puzzled about how I am feeling with less dairy, and "white" stuff and no alcohol. We aren't even going to a halloween party because of the temptation to drink... I really would like to go, but just the thought of non movement scares me. I think the non drinking will take a little getting used to, but if it means better movement and the possibility of hitting the road again, so be it. Its going to be a little hard in the beginning, but its practically been a month (with the exception of the lass of wine last week) that I had a drink...

Yes, I know I am babbling. But it makes me a little better to type out this stuff.

Why?

- why does all the walking/running I am doing seem effortless?
- why do I have a really good feeling about the drug I will be taking?
- why do I feel better than I have since January 2009?
- why are the local doctors in town such idiots, especally since I could have been treated since January 2009?
- why do I think that tons of huge PR's are in my future, without even a second thought?
- why am I so excited that the thought of doing a long distance event?
- why am I able to move around the office and home so easily without thinking twice about it>
- why is this Vegan-ish diet helping? Granted the no alcohol is a big factor, but the limited dairy/meat is really a factor, too.

A treatment plan

OK..

went to see the new neurologist yesterday. I like him. I told him of some of the research I have been doing on the net. He thinks one of the drugs I asked him about --Avocet-- maybe the one for me. It basically helps with movement and a "real" comeback of sorts. When I told him that I have been moving better (and confirmed by Dave) he thinks this drug may be the ticket. There is a good and bad part of all this.. the good is that it is a weekly thing.. the bad is that it is an intramuscular injection. If this is the drug that will get me back on the road, then it is a good thing. I have to get an MRI done in November; this one is short, if i remember correctly. Just hate feeling like toothpaste. I am told to see if something is there. The good news is that I am better than I was at the last appointment. A good thing. Now keep hoping that it is going to get better from here. The doctor seems to think that there is no reason why i cannot do my marathons again.... of course with training. That made the whole trip to Gainesville worth it.

doctor's appointment tomorrow

feeling really good these days and we have a doctor's appointment tomorrow with a new neurologist. in reading my facebook pages, i found two possible drugs to go on. one was just approved by the fda today, its called gilenia. the second is an injectable drug called tysabri that the doctor i am seeing tomorrow is specialized in. granted its a once a month thing, but ya know the reading i have been doing is really positive.

i'm still puzzled of the way i feel -- better since i go the diagnosis. i do know that i cannot have alcohol anymore. i had a glass of wine with dinner and could barely move after the one drink. no major thing, i just have to remember not to order liquor when we are out AND limit it when we are home. not that we hardly ever drink at home. its also with whitel flour that i am having an issue. seems i can't even have saltines or something similar. just totally numbs me. that is a question to ask. but ya know, its all gonna be good. the stuff i cannot have won't be too much of stuff i will miss. we have a new theory. the first attack came after a night of drinking really strong stuff at home. could there be a link?

right now, i'm really anxious to get out of here, and go on the treadmill. granted for not too long, but ya know, its something. AND the runner in me is back.

Can a "real" recovry happen?

I have to stop doubting myself. I have to believe that a real recovery is going to happen. Again, it seems that as soon as I got the diagnosis, i really started believing in myself. More recently, I can walk in a store on my own, and even walking around the house and the voluneer gig without too much of a problem. It is just weird. I know I said this before, but its just too weird. Its like the push I needed. Who would think that something like a diagnosis would help me so much. What really puzzles me is WHY I didn't know something two years ago -- maybe lousy docs, care all that. I shouldn't have to go over 2 hours away for a doctor....

And the workouts show that I still have the umph in me to really do good. Now, my brain is soooooooooooo thinking marathon training. its gonna take a while to get the mileage back, but the gasparilla 5k is a reality. i would love to have a goal of the 8K. Ya know, i may just commit myself to that...

Been bad...

I haven't posted since Tuesday. Not for lack of stuff, but just a little bit of laziness on my part.

I did not get the job I "interviewed" for on Monday. I got an email "thank you for playing". Not fair at all, especially since i did not talk with anyone. Just not fair. And the interview was a computer personality test. Not my thing either. On the plus side, the company was wee bit too casual for me. I really have a problem with jeans and t-shirts all the time. Busines casual or scrubs are okay for me, but the rest is just a lttle too much. Sure it may create more liberating atmosphere, but just is not my thing. Still waiting to hear back from other place.


Talk about irony, since I got this diagnosis, am actually moving tons better. i did a walk the other day that will put some of my pr's to shame once i am pernamently on the road. its coming soon, i am sure. maybe this med i have been seeing on the net will be for me. i think this diet is doing wonders for me, tho. NO alcohol (and most of you guys know I like my beer and drinks) makes the movement better as is no sugar or processed foods (or anything made from white stuff... bleached flour, sugar, salt). I am going to try the no dairy part of this, but that is probably going to be the hardest. I like my cheese on some veggies (spinach and broccoli) for one. On the other side of things, I lost 5-7 lbs in a week of not eating meats and using beans as my protein.

Dave is doing lots better after his really high sugars the previous week. I think we will be in the background for a while. His heath is far more important. Less than six months until summit. I am hoping for fun, fellowship and friendship will prevail there. If summit was now, i would say no. End rant.

Time to get back to the volunteer gig work.

I really hate the waiting game. Yeah, its not even 0900, and my stomach is doing flips. I hope its for the good. I have yet another good feeling about this one. We shall see. All I know is that I will be sooo happy.

I really like this volunteer gig, but i have to do more. A little more. I am anxious to get back in the real working world like crazy.. ironically, on the way home, dave got a call about a contract. $40/hr for 3+ months... good decent $$. keep praying for us that he gets this. It would really be nice if we BOTH worked.... THen we can really catch up on bills and stuff. AND maybe even taking a well deserved vacation up to New England. I am thinking WAY ahead of myself now.

Dd I mention I was able to get around really good today whiel we went out to breakfast. A friend said this good movement may be psychological, now that i have a diagnosis.... I am buying into that theory. That and lots of your prayers are really helping, too.

Inquiring minds want to know

Today is a quiet day. BBQ in St. Pete, but not with folks I really want to hang with. Getting really tired of these Summit meetings. Dave asked a very simple question that he thought of in the middle of the night, and he was literally slammed by the "chair".... then a whole bunch of other folks on the committee asked the same thing. My big thing is "inquiring minds want to know" especially if there are folks from outside the area who want to attend. 'nuf said.

Feeling good these days. I'm thinking the no white stuff (sugar, flour) and proteins, save beens really is making a difference in gait and all that.... we shall see. Got another appointment on Monday. I would KILL for anything. I just want to work for insurance so we can go to docs and not worry about paying them. Same for drugs. I really am worried about dave. His blood sugar was really high, now its almost back to his "normal" levels...

It's really weird. I feel so much better than I have been in ages... the strange part is that its since I have gotten the diagnosis. It may be all mental, but you know its something. I am able to get around solo without a ton of help.

Tomorrow, I am hoping to be able to go for a walk with Dave. That is, if Dave is feeling better. The past few days have totally freaked me out. His blood sugar has been really high, and he's been having a really hard time staying awake. But if he is awake, its all good. Friends and family have been awesome through this. I am hoping that the stuff that shands is hooking me into (100% paid care) will get linked into Dave. Even just to see a doc to get meds. I am still doing good at this volunteer gig, wish it paid. Its the type of job I really could get into.

Still waiting to hear about last week, and have another appointment Monday... an interview is an interview... I just want something very soon.... Going a little nuts, but the volunteer stuff has got me back in the working mode. Thankful for the little things in life... Just want the insomnia to go away, and Dave to feel better. THe trials of getting older, I guess.

I have a new mantra...."marathongirl is back"

Just some thoughts

Spoke to my best friend of 33 years today for the first time in ages... and you know, its like we have never stopped. I've got to make it a habit to call every now and then...

I have yet another appointment tomorrow.. I don't like the "can you start right away" attitude. If the other interview from last week comes through... the one from last week has priority. We will see. I like the more "patient focus" job. Not sure about everything else....

Just really nervous about outcomes that may happen from other appointments.

Found out from a friend about possible diets to "cure" this stuff. The fact that I cannot drink nor have anything white (flour, sugar) is gonna be tough, but if it means getting my life back then its totally worth it. I started figuring out the alcohol part when I cannot move after having a beer or two.............. won't be bad, right?

Moving good

Its just really weird. I am moving around so much better these days... so much so since the diagnosis. Wonder if a lot of it is just mental or prayers being answered for a real recovery. I am thinking the latter, ITs a hard diagnosis to swallow, but I think I am doing OK, being very strong and trying to make the best of it. For the first time in MONTHS I think I can actually know that a treatment is there. I did some research and there is some drugs that will help me with movement as I know it. Just have to talk to the doctor about this... and there are diets that will help lots. I am not sure about not having any cheese or milk and be gluten free, but lots of veggies. I figure its just a low iodine diet for life. I can deal with parts of it like being alcohol free, but not sure about the cheese and milk....

The old person in charge of TNT, Bill, is now working for the MS Society locally and tells me that the support is there if i need it. I am going to call them to see if there is another doctor in town so that I don't have to go all the way to Gainesville. Bill also knows that I will comeback in the training world, and hopefully be a person people can come to for support.

Finally a diagnosis... sort of

After calling everyday for a week, I finally spoke with the doctor who did the Spinal Fluid test a MONTH ago.. The doctor wasn't very pleased that I waited this long for an answer... BUT he is 75% sure that it is MS.. but wants me to see another doctor befor starting a treatment plan...

What pisses me off is that when I fell the first time and mentioned the family history of MS and asked for a spinal tap, that doctor thought I was nuts.. Dave is wondering if I can do somehting as a result of a delayed diagnosis. In fact, if we did his original diagnosis of Parkinson's and got treated for it, it may have gotten worse, Fortunely, he did not treat me for it, instead I was sent to someone else who said that I was getting seizures, and treated me for it... The meds did not help one bit, and as soon as I stopped taking the pills, I got a little better movement and more productive

I'm on phase 2 of the volunteer gig. Wish I could learn more on the total procedure they use. On the flip side I really want the per diem job that i interviewed for yesterdy.. The volunteer place said that they would work with me. They don't want to lose me.... That is a good feeling... Makes me feel wanted

Today's Excitement

Had an interview today and I think it went pretty well. In fact, I haven't felt this good after an interview since the time I spoke to people at Astra... but I won't get my hopes up too high... I don't want to be disappointed. I had a good feeling when she talked money with me, and showed me the machine (Computer) I will be using..... Good stuff all. Granted its a per diem job for now, but let me work 3rd, and the shift diff is really good... Holiday diff added in makes it all that much better. I really don't mind working third... as long as I can sleep during the day. I am told that its a good chance that the number of hours can be lots. I just have to be ready at a moment's notice for a shift and also according to the schuedule... just hoping all will work out... No benefits, but that is all okay..... i may actually be able to afford a low cost health insurance for both of us....

gotta get some food... talk to everyone later.

I was stunned yesterday when I got a call for an interview.... every now and then it surprises me. its for a per diem position, but that is fine. the person i am meeting with said it may eventually go full time. either is fine with me. good thoughts and prayers will be appreicated.

enough with this hot weather. It is really beginning to get to me. i am trying to drink liquids and keep hydrated, but not being really successful doing so.... gotta try to force myself.

in other good news, i finally got a hold of GE for the dishwasher. We are going to have a new and improved model in about two weeks..... yeah!!

I am currently looking at a race schedule... and training schedule. Really excites me. If I get this job, a gym membership is a definite. THey most likely have a facility in that building.... going back to classes will do me a world of good.... both physically and mentally. The fact that I am doing my own thing (in terms of training) despite tons of phone calls to Shands and really knowing what is happening is very stressful. (and adding insomnia to the mix isn't good either!)

Unmotivated today

Feeling just a bit unmotivated today.... figured something out in the project I am working on, which I am quite pleased with....Why is it on unmotivated days that I do process more stuff than expected and figure stuff out...

The first thing I am going to get with $$ tomorrow is some sleep aid. I really need a good night's sleep... Getting worried about tons of stuff (money, the road back, hoping to get a real job, needing to go to the gyn for female stuff that may be due to the RAI.... yearning for a gym workout on more recent equipment than what is in clubhouse..... ).

Some days, I really ache to be back in Boston... for both of us to have friends close by and hang out with... Its sad that folks that I consider to be my best friends live up north tho I have tons via TNT... my home away from home. I can't wait to start training with them again...

Enough venting for one day...

Back at It

The wait continues for the results from the spinal tap over three weeks ago... a treatment plan would be ideal.. especially since under the great advise a great friend, i went out for a run on Saturday.... not a great time, but still getting out there... i am practically able to move with no assitance, and better when the temperature where I am is good and cool.... gonna get back into the wii'ing soon, too... need a little motivation to do so. Exciting news is that I said I would do Ragnar 2012 with some LCAR and JOR friends... I love relays, especially if we can repeat the awesome time we had in NH during Reach the Beach...

In other news, I decided to get out of the house a little and start volunteering at a community development program in town.... not a bad gig, just helps me get my mojo back into the real world.... i will try to post more later!