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!)