Living with MS

I Am Getting Movtivated!

2010-01-28T06:12:00.000-08:00

OK, I still exist and am motivating myself to do better... not only with this blog, but with my time and organization! I go through spurts and this is a spurt of lack of energy and motivation.

However, when I go to work and listen to my 22 and 23 year old employees talking about all of their ailments...I start to feel realllllly good about my 38 year old MS self! I am doing great in comparison to these "kids"...they have no clue and with that I am estatic!

I have the day off today, so I am going to push myself to stay awake and actually get some things done that I have been putting off for quite some time! Hope everyone enjoys their day and I will update again very soon!

A New Year and A Resolution

2010-01-10T17:36:00.001-08:00

OK...new year is here and its time I get serious about keeping with my updates and blogs. I know how busy we all can get, but that is no excuse to not keep up on here. This will be at least one resolution I will keep this year.

As of November 2009 I have completed the first year of my two year study for FTY (fingolimod)...so far so good. Only one relapse worth mentioning that required IV steroids for 3 days and just a few other minor episodes. Not bad considering I could be in the placebo group. I always hope not, but then again, if I am doing this well on the placebo; I can only imagine how great I am going to do if I get to participate in the extension 2 year study after this november. All fingers and toes crossed.

I am also now working full time and balancing my family, work and MS pretty well. I do get VERY tired but who wouldn't with that kind of schedule. I consider myself very lucky and thank God every day that I can still get around and no one around me even knows I have MS. Just recently at work, I let a couple of co workers know...Im not ashamed of it at all, but want to be treated just as "normal" as everyone else. Heck most of the the time I can hang longer than they can. At this point and time I am just lucky for everything: having a job, a beautiful family and I still am very thankful for my health as odd as that may sound.

On the downside, I am missing my friends, don't do much else besides work and take care of the kids, as that is pretty much all I can juggle without getting exhausted. Fatique is my personal number one symptom with MS and my husband will point out A LOT just how tired I act and look. NO worries though, I certainly don't need any reminders of how tired I am because I KNOW IT!!! I wake up figuring out how many hours before its time to go to bed. I wake up tired and I really wish i did not feel this way. I take a b-12 injection once every two weeks but it is getting to a point where it is really not working.

So I guess besides blogging this new year, I am also going to give it my all and find the life that I am missing out on. I will not let MS be my life....its going to be MY life with MS!! Have a great night and you will be hearing from me this year...

What the Heck...

2009-05-26T03:24:00.001-07:00

OK, sure it's great to be excited about starting a new job, but the fact that I got up at 4:30 this morning is just crazy. Could not sleep so thought I would try the getting ready early. Its not so bad except I am having flash forwards about how tired I am going to feel later today.

Fatigue is enemy number one for me. It has been by far my biggest complaint throughout my journey with MS...I have learned to live with it and deal with it, but it is still there. I try to plow my way through it, but will often sneak a cat nap during the day just to make it to bedtime.

You know you are battling fatigue when you wake up in the morning and the first thought that comes to mind is how many hours before bedtime. I do this quite often, but again, I manage and no one would really suspect anything different.

Well, at least this gives me more time in the day to update my blog. Have a great week and off to work I go in just about 3 hours....

Time Gets Away From Me...

2009-05-25T10:34:00.000-07:00

OK, to fulfill my blog acomplishment, I must be better about blogging. Where does time go? Hmmm, 3 kids, schools almost out and I GOT A JOB...finally! I am really excited about it though...I am finding it to be more of one of my dream jobs than a "real" job. I will be working in my neighborhood golf club. I will be supervising the dining room and also filling in for the beverage cart on the golf course. The fact that I will also be bartending and catering thrills me to no end. I am completely stoked and being that my drive to work is 2.38 minutes is AWESOME!! Now the fact that I have huge headache today is partly from staying up to late last night (no, not a drop of alcohol), getting my house organized since I will be working the rest of the week (this is a hard concept to get use to, being that I have not worked a "real" job in just at 10 years)!

I will still be dealing in real estate, so don't write me off for all of your house selling needs! I am still here, but had to find a supplement and paycheck!! I am excited about the job and hope it works out long term!! So back to the blog....I will be better...I will be better...I will be better!!

Happy Memorial Day Everyone! Our Troops Rock!!!

A New Week....A Wet Week!

2009-05-18T15:06:00.000-07:00

Well I am off and running in this new week....well not really running, but you get the picture. We have lots of rain which I am going to blame for my fatigue...gotta blame something (its the whole denial thing). I hope everyone has a great week. I will be posting more shortly. Just wanted to make sure I added an update for jump start the the week!

Happy Friday Everyone...

2009-05-15T16:37:00.001-07:00

Time never seems to slow down, even as I do. Today was one of those days where I thought I may be having another relapse. So far, nothing I can't handle. The best I can describe it is that it feels like my back and legs just go out and the pain is excruciating. That is what caused the round of steroids a couple of weeks ago. I am so hoping it goes away before it ever really hits. The happens most often for me (knock on wood). Through all that I go through, I am really still in denial. Do I really have it? That is my number one question at the doctors. I am always trying to find ways out of it. Yes, I deal with it, but always looking for a way out. I was slower today than normal with some pain beginning again. I am not a complainer by nature so I pretty much suck it up and continue through my day. I have to laugh at the type of blog I started as this is the last thing I usually talk about with people. So again, perhaps this is a way for my to communicate without having to "talk" about it. Between the fatigue and the pain, I think its time for me to go start movie time with the family. Have a great night everyone!

2009-05-14T18:52:00.001-07:00

Learning As I Go

2009-05-14T18:34:00.000-07:00

OK...I am "practicing" with this page. I thought I would be a wizard considering I am a myspace and facebook queen of layouts...however, I am finding this to not be the case on here. I have deleted my page already several times and have moved things around to where I can't even find them....so hopefully practice will make perfect and I won't completely take down this blogger website. Hope everyone is having a great night!!

New Trial Study

2009-05-13T18:23:00.000-07:00

I am going to begin this blog page to help myself and others that may choose to read this.

I am currently a clinical trial patient in a MS (multiple sclerosis) study. More commonly I refer to myself as a "lab rat", but nonetheless, I really should be better about charting my days, good and bad, so that I can keep track of my own self. Just a quick summary: the trial drug is FTY 720 also known as Fingolimod.

This is a 2 year study with a 2 year extension phase after the first two years. I started in November 2008 and so far I am still in the trial and doing well. I have only had one relapse since I started and that was just about 3 weeks ago. Now as far as a relapse goes, it was by far the worse one I have had in a long time. I was treated with a three day course of IV steroids and seem to be back on track now. I still feel taking a pill once a day is so much better than giving yourself an injection. So here's to a new journey in blog world....