[tovaxin_lab_rat]

The past couple of weeks I have come to the realization that MS is slowly (?) taking away the things in my life that I love.

I have accepted the fact that I can no longer fly my airplane whenever I want and am done grieving about that. What is, is. I can still fly but must have someone else (a flight instructor or another pilot) in the airplane with me, I just can’t fly solo any longer. I miss that, but I have accepted what I cannot change.

I am not one to complain about life’s little challenges, I tend to look for the positive and move on. That’s what I did when I was faced with this disease. I figured I would just make the best of it and keep going. I’ve made a career change, some major lifestyle changes, probably some personality changes , but over the past 6 months, I’ve been met with some challenges with my current job that I am not accepting very well. That’s the realization that I have come to these past few weeks.

I spent 2 years making a serious effort at going back to school and graduating with a Bachelor’s Degree in Horticulture, Magna Cum Laude, after I was dx’d with MS. I knew it was going to be tough but decided that I wanted to work in the landscape design field as I really love what I do. I have been very fortunate with the company that I have partnered with doing installations and we make a great team. We went to school together and work very well together.

What’s the problem you ask? The problem is fatigue, pain, MS. I work one day and stay in bed the next day. And by work, I mean sitting at the computer working on a design, traveling to a job site (residence) taking photographs, maybe doing some grocery shopping, interviewing a client, all in all, maybe spending 6 hours out or less. By the time I am done, I am so tired, I cannot function. It’s all I can do to get home, download the photographs, get some water, and flop into bed. The next day I am toast.

This has all happened in the last 2-3 months. I feel like my life as I once knew it quickly slipping away. I am not a quitter, I am a fighter. What am I going to do? I have no one to talk to but you, my online support group.

The rest of the story….I go in for the re-test for the clinical trial June 27th. It should take 2 weeks to find out if I am back in the clinical trial extension study on the real drug for the next year. I guess at that time, if I am in, I won’t have to make any decisions about future treatment. If I am out, I get retested in 90 days. Maybe it’s time I think about treatment. Back on something. That’s the ethical dilemma we “lab rats” face. Once I am out of the trial, all the data goes away.

Sorry this is so long, but I am just tired of feeling so crappy. I love what I do and maybe I need to find another way to do what I do…another way of landscape work/help/something. I just don’t know. I do know that trying to make a decision when I don’t feel well is a very bad idea.

What have you lost to MS?

[Twinkletoes]

I'm so sorry, (((Cheryl)))

You've really put your body through the paces the last year or so. I know you've been a "tovaxin lab rat" and haven't really felt well for much of that time. You've lost weight. Thru all of this you've kept pushing forward, mentally and physically.

I wonder if by being Cheryl, the Super-Energizer Bunny, you've just drained your batteries and need to recharge?

Sending hugs to you, Cheryl, and baking up a fresh batch of mint brownies in your honor. *visualize pic of yummy brownies here*

Proud of you for all you've accomplished. Keeping you in my prayers and hoping you'll catch a second wind of energy and enthusiasm.

[Nancy T]

Just sending hugs and good thoughts to you, Cheryl--and everyone else who has lost parts of their life.

If the increased fatigue has "only" been in the last few months, isn't there a chance that it will improve--that you'll go into a "remission" in the fatigue department? There's always that possibility, isn't there?

In any case, very best of luck (with the trial results and everything else) and good wishes. And thanks for helping make this forum possible for us. You sound like a super person.

Nancy T.

[tovaxin_lab_rat]

Originally Posted by Nancy T

Just sending hugs and good thoughts to you, Cheryl--and everyone else who has lost parts of their life.

If the increased fatigue has "only" been in the last few months, isn't there a chance that it will improve--that you'll go into a "remission" in the fatigue department? There's always that possibility, isn't there?

In any case, very best of luck (with the trial results and everything else) and good wishes. And thanks for helping make this forum possible for us. You sound like a super person.

Nancy T.

Thanks Nancy and Twink.

I certainly hope that fatigue goes away b/c it has been very unforgiving since December.

[SandyC]

First of all Cheryl here's a hug. I remember the day like it was yesterday when Jim graduated from college but would never use his degree. It was all he could do to walk across that stage at the time but he was determined to no matter what. I also remember the day I had to tell my boss that I would not be returning to work because I needed to become Jim's fulltime carepartner. I didn't cry, never have, but I would be lying if I said I didn't miss it. It was a graphic design job, teaching new designers, one that you must stay up to date with and work in the field to be even considered a position.

I know that part of us is gone and like you, Jim and I have accepted it. But it is always with you right? Just last year I talked about finally getting that studio up so I could start painting again and now my mom needs the room instead. I often wonder if I am being tested to my extremes. I wouldn't change a thing however as each obstacle has brought me something even more wonderful than the change before. I value my time with Jim and he with me. This is something not many families get these days and that is time with each other. Now I am going to have the opportunity to help my mother. I know that will be tough, but it's something I know I will cherish later even if she breaks my sanity!

I just wanted you to know your not alone and yes we do understand. Before you know it there will be many posts to show how much support you have here. Maybe someday you wont be able to do the job your doing right now. But maybe a better opportunity will come up. I know here in my area 3d imaging is in need by architects and landscapers. I have been approached in the past to design two basements for a contractor just because I had knowledge of the software. I had to do it for free but it was fun nonetheless.

No matter what happens we are here for you.

[tovaxin_lab_rat]

Last October I purchased a new software program for my design business. I had a heck of time learning how to use it. It's 3-moduled and CAD. I love it. I am getting a good grasp on it and it has really helped me with my designs. I came to the realization last fall that I could no longer hand draw my designs for several reasons - 2 of which were 1) my hands are mostly numb now and 2) clients want instant gratification - pictures of what their yards are going to look like NOW.

That has really helped me but I still find myself so behind in other things with my life that keeping up to date with the new technology taking a toll on me.

In addition, some of you may remember that my mom is ill and I am trying to help my sister, long distance, with some of the emotional support of her terminal illness. I can't physically be there but I am doing what I can to help my sister.

Maybe I am expecting too much of myself, but I have always been the "go to person." I know I have had a lot on my plate since December. First the sinus infection that wouldn't go away, the fiasco with the "in-laws" over Christmas, then my Mom, then the exacerbation, the trip to DC, etc...so maybe I just need to kick back and give myself a break????

[SandyC]

Well, when you find out how to slow down let me know OK? My family relies on me to keep everyone together and mediate arguments. I am just now realizing the tough job my grandmother had. lol

I think you need to allow yourself to rest. I say allow because people like you and me don't know what that means. We go go go until we break and then we think we have failed. I am getting better with time and age but I also don't have ms to add to the mix. You know trying to do too much will take it's toll. Maybe it's time to think about a break to see if your ms improves when your not doing so much. You really are a go getter, much more than I ever was and I admire that in you. But it's OK to say you need some refuel time. I got tired/stressed just reading your last paragraph.

[Victor H]

There was a wise old man who said to me: "Do one thing at a time, and when it is done, then move on to the next task, no matter how many demands/requests are made of you". He was my Major Prof. My committee members all agreed and said that if there is one single lesson they want to teach, it is that you cannot remain sane when you let the world weigh you down, so you need to learn how to say "NO".

That is one of the most difficult lessons to learn.

The world will survive if you decrease your obligations, because in reality, those obligations are self-imposed.

On a business note, there are students who would love the chance to have part-time jobs that pay cash (i.e. you send them a 1099m at the end of the year and do not have to hire them). Boise State is bound to have a bunch of students who could fill a role for you.

http://selland.boisestate.edu/center-hort.asp
http://www.boisestate.edu/biology/index.htm

Think of yourself FIRST.

-Vic

[Victor H]

Originally Posted by Victor H

The world will survive if you decrease your obligations, because in reality, those obligations are self-imposed.

I am still trying to learn to say NO, and it is an all-encompassing task.

Type A personalities always have an internal fight going on, and there is never a real winner because we always think, regardless of our successes, that we could be doing better or more. MS makes this battle rage even more.

HOWEVER, you have power.
Power to slow down...
Power to delegate...
Power to say NO...

Hang in there, it is a tough battle, but you will win the war...it just takes a little time...

-Vic

[tovaxin_lab_rat]

Originally Posted by Victor H

There was a wise old man who said to me: "Do one thing at a time, and when it is done, then move on to the next task, no matter how many demands/requests are made of you". He was my Major Prof. My committee members all agreed and said that if there is one single lesson they want to teach, it is that you cannot remain sane when you let the world weigh you down, so you need to learn how to say "NO".

That is one of the most difficult lessons to learn.

The world will survive if you decrease your obligations, because in reality, those obligations are self-imposed.

On a business note, there are students who would love the chance to have part-time jobs that pay cash (i.e. you send them a 1099m at the end of the year and do not have to hire them). Boise State is bound to have a bunch of students who could fill a role for you.

http://selland.boisestate.edu/center-hort.asp
http://www.boisestate.edu/biology/index.htm

Think of yourself FIRST.

-Vic

Vic, I forgot to tell you that's where I went to school. But I guess you already figured that out!!! It's one of the best, and toughest, programs in the country!



Did I ever mention Boise State Broncos to you???