100,000-149,999 SparkPoints 139,157

Random MS thoughts, musings & trail race pics

Thursday, June 07, 2012

Meant to blog after the Buffalo Stampede 5 mile Trail Race last weekend, but never got around to it.

It was a very small race... 5, 14 or 19 mile trail race and a bike race.

It started on the organizer's mother's farm.

The port a john was right next to the cow field. lol

I have never had a sink with running water next to a port a john. More lol.

Hubs was game enough to do the 5 miles with me. (Well, I signed him up, he shook his and went with good humor:-)

I knew that I couldn't run. I have PF on my left foot and my problems with my MS. But Hubs can power walk like no one else!

The only part on a road was the first quarter mile or so to get to the trail. The whole course was on private property after that, which I found very interesting.

Ray started to run at the cow bell start. Yes Run! I couldn't figure out what the heck that man was doing! I, ran beside him the best I could. He finally slowed down when the trail got into the woods.

I was saying,
"You don't need to run!"
"Why are you still running?"
"Holy smokes you're fast and you haven't been running since High School!"
"By the way, how fast did you run in High School?!"

His answer after asking many times... "A little under 6 minute miles."

WHAT?!?!?! How did I never know that?!?! He has got to have been laughing at my 11:30 minutes miles for sure!

OK, back to the trail race...

It was super muddy! There was lots of heavy rain the day before and overnight.

I was really enjoying myself until the straight uphill hill in mud. UGH! What a workout! My eyes and brain did that thing where they just don't work together anymore and I get oddly dizzy.

I know that this picture doesn't look uphill, but I promise you that it was! (The organizers added the hill to "make us cry." lol)

After crossing over water a few times, you went through some fields to the next farm.

We came in last. But who cares? We had fun! (Except for the whole eye/brain thing, of course.)

They gave us cute little finisher tags and fed us food from smokers.

It really was a cute race. Very well organized. And for their local fire department. All the volunteers were fire dept. volunteers.

So, now for the musings...

I went to my MS neurologist a few days later. She asked how her "poster child for MS" was doing. I had to fess up to the terrible fatigue from working at Kohl's and that my eyes and brain were disconnecting a whole lot, even when I ride my recumbent bike in the basement, and lots more times than I ever fessed up to my family.

She said, "Oh, just like your last big relapse a few years ago."

DING, DING, DING! DUH! I never put my running problems together with my last relapse together before. How stupid am I? emoticon

I woke up with double vision one morning and it didn't go back until 5 days of IV steroids. But then for about 5 months I couldn't go outside with a hat covering most of my vision and a cane. My brain couldn't process the whole wide world. Kid's screaming in a store make me go down on the ground twice. Very loud talking or noises could do the same. I couldn't read more than one row of large print at a time. My balance was non existent. I didn't drive for 6 months.

So, now what's leftover is an MS Flare Up. Not a new MS Relapse, but not good either. It could harbor bad things in the near future. And I am on no MS drugs at this point, from bad reactions to the drugs.

I could control my fatigue when not working, but since Halloween, my schedule is Kohl's schedule. I've talked to the scheduler and after that didn't work, I talked to the head of HR about my hours and schedule. They're going to try harder to not schedule me so much or so many days together.

So, here's my choices...

1. Start to take meds for the fatigue. I pretty much suck at drugs. My mother always called me ".002 percent of the population."

2. Quit Kohl's. Now.

3. Let it ride until the end of June, when I will hopefully have my quarters in for Social Security, so I at least get something at retirement age.

4. Ask to cut back even more, and try to stay.

Kohl's hasn't been all bad. I really like my co-workers. It has really helped me with my SAD over the winter. It's great for my cognitive problems. Just try having to listen to the overhead pages, the customers talking to you and the headset in your ear all at the same time!

I had my blood work done yesterday and I have a brain MRI on Monday. I filled the fatigue drugs, but haven't been brave enough to try them yet.

Any thoughts, my SparkPeeps?
Share This Post With Others
Member Comments About This Blog Post
    great job on the trail run.....

    hope all goes well on your tests and that you can come up with a plan for work
    2112 days ago
  • TIGGER622
    My gosh honey you certainly are the poster child!!! Whatever you decide I know it will be for the best, if you can tolerate the drugs and they will allow you to have more energy to do the things you love doing and stay active, then give it a shot! Sometimes we need a tiny bit of 'bad' to give us a whole lot of good! And cut back those hours girl!!!! Stay strong, we're with ya!
    2112 days ago
    Looks like pretty countryside for a race, thanx for the pics. I hope you are able to get that MS back under control.
    2112 days ago
    It looks like you've really gone through your options. I'd suggest doing pros and cons of each, and then deciding.
    Great race pictures by the way!!!
    2114 days ago
    Love how your got Ray to do the race with you!!! Looks like a ton of fun! You have received some great advise here and I think cutting back on the hours is great if that would help you. I like that you are able to get out though and be around people for the whole SAD issue. So maybe even if you could find something for even one day a week that will help you with that but not be too much for the MS part. You are doing amazing things and what a trooper you are!!! emoticon
    2114 days ago
    Looks like a beautiful course for the race. Congratulations on finishing. As others have said you are an inspiration. Wishing you well with the Kohl's situation and for your recovery from the MS flareup.
    2114 days ago
    Lynn, I've missed you!!! Thanks so much for your updates. The race pictures are awesome, but YOU are more awesome!!! I think I heard the word inspiration mentioned a few times and I definitely agree.

    The note from the doctor with Kohl's if they don't work from you is a GREAT idea. I have no doubt they don't want to lose you. And it IS to YOUR benefit as well.

    Whatever you decide, I hope this all goes well for you and improves quickly. We know how that stupid MS is - totally unpredictable!!!

    Take good care of yourself!

    2114 days ago
    Hi friend! I gave your situation quite a bit of thought. Here's where I end up on the advice:

    I agree with the approach to keep your Kohl's schedule something that you can tolerate healthfully. It does you no good to wear yourself out every day. It may mean you working past the end-June so that you earn enough to qualify for the SS quarters; but, it's a smart idea to earn the SS if you can. If Kohl's will not accommodate your needs (after pursuing with HR), maybe it's time to find a part time job elsewhere.

    I'm sure you know this; but, just to be sure.... the SS "quarters" are based on the money earned and not on any actual calendar quarter. Not trying to be annoying if you are well aware of this, just want to be sure you are aware. I went through this with my hubby a few years ago as he was short just 3 quarters to qualify for SS (worked most of his life in a non-SS contributing job); he finally got a part time job after retirement to meet the quarters qualification.

    Oh, and the trail run with your hubby sounds great. It is wonderful that you guys are doing things like this together.

    Take care, Lynn.

    2114 days ago
    First on the race it looks so beautiful there and a great setting for a race instead of a street. I'm pretty sure you're husband is amazed at your pace, even though in high school he could run much faster. But he didn't have the physical problems that you do and the fact that you can even get out there and take part in this event is so awesome.
    Secondly I've know a lot of people with MS at different stages. I do case management with elderly and disabled. I think you are a total inspiration in how you are grabbing life and doing whatever you can do to enjoy it even when you have such obstacles to overcome. I know others who do that but I know many more who just give up. People like you are such an inspiration!!!
    I don't have any advice that hasn't already been given. But if you can manage to get the quarters in then when you have to quit you may be able to apply for social security disability now or in the near future, and not just so you can get ss at retirement age. Hopefully you'll be able to make it through so you can get this quarter completed. But if push comes to shove, your health is more important. But hopefully Kohl's will follow disability laws and work with you so you can hang in just a little longer. In any case, you are one amazing woman!
    2114 days ago
    Awesome race report. Thanks for sharing so many pics. Ditto w/ what others have said about getting a Dr's note and making sure Kohl's honors your legal rights. Sounds like working there is more helpful than hindrance, so I suggest staying as long as they're accommodating.
    2114 days ago
    Cool scenery! And you are a trooper. It sounds like Kohl's thinks you're so valuable they want you to work all the time! Check on websites re Americans With Disabilities Act. Employers are required to meet your needs--and they can't get rid of you because you ask for accomodations. It's possible they could even be required to have you work in an area that is less stressful.
    2114 days ago
    Great race report, that looks so cool to do.

    As far as the other situation, I agree with Mary. If Kohl's would cut back hours to make it through 20 more days so you can get your SS. If not your health is more important than money in my opinion.

    Whatever you decide, you know I'll support you in anyway possible. emoticon
    2114 days ago
    What a lovely race! And it looks like you're getting some useful advice form everyone. Take care of yourself, that's the most important.
    2114 days ago
    I taught with a woman who has MS and she always looked much better when we came back from a few days off.

    I am thinking of you.

    2114 days ago
    The setting for the race looks absolutely beautiful. I think the mud might've done me in.

    I agree with the others about having a note from your DR about getting your hours cut back, if they still haven't listened to you.

    It sounds like you're doing great, tho, even amidst the challenges. Here's a big pat on the back, as I'm proud of you.
    2115 days ago
    See what happens when the next schedule comes out. If they still haven't listened, try going to HR with a note from your doctor. Since there are some positives to Kohl's (besides the quarters for social security) I would try to hang in there if at all possible.

    The race sounds really cool - amazing how you can still learn new things about your spouse after so many years, isn't it?
    2115 days ago
  • TEE803
    Gotta agree with Lightingrunner...since your last conversation with HR, I think they may get it this'll be glad you did when you are eligible for your SS! Not to mention, I think being out in the world is very good for you! Like you said, your SAD was much better this year! They just need to comply with what YOU need! It's not like you need the job, right? It should be on YOUR terms for sure! And, since I know you are as fabulous in customer service as I am, your skills shouldn't go to waste! Quit if they keep screwing with your hours is the simple solution. You honestly have nothing to lose:-)

    Love you!!!

    Baby Sis:-)
    2115 days ago
    Ahhh, the joys (HA!) of MS. My mother has been battling this disease for over 20 years and although I can not relate personally, I can relate as a caregiver/family member. My cousin also has MS and a friend of mine, so it is annoyingly familiar. I signed up for the 50 mile MS Challenge Walk in September and have been training for the past two weeks. It gives me a whole new reason to be thankful that my feet and brain work together like they're supposed to. Hang in there! Hopefully the Social Security will come through for you but don't stop being active - it really helps! Sounds like you had a fun walk!
    2115 days ago
    In the very first picture, the barn looks like it has a square face.

    I'm glad that you are getting checked out. The MRI will tell you a lot. I'm worried about you and want to make sure that you are not over doing it. Does Kohl's know that you have MS? Could they put you on for minimal hours till the end of the month and then you'd qualify for Soc Sec? That would seem the best bet, IF you can physically handle it. You're definitely on my prayer list. If you need anything, remember, I'm just a text, phone call or 2 hour ride away!
    2115 days ago
    I think it's sweet that hubs ran with you, also that all those times you were talking about your speed that he stayed mum about his fast wheels emoticon

    Sorry to hear that your MS is rearing it's ugly head again. I don't know much about MS so I can't offer any advice, except to take care of yourself. I will keep you in my prayers. emoticon
    2115 days ago
    Ah, my little American. ((HUGS))

    I'm sorry that I don't know a whole lot about MS, even with living in the MS capital of the world (Saskatchewan). But here is my thoughts.... if you stay at Kohl's til the end of June, is what you would get at retirement age worth it? Is there any way that you could ask for a two week holiday, and see if your fatigue lessens - so that way you would know if it truly was the job, or perhaps something else going on. I'm with you on the drugs, and not wanting to take any, but hubs is exactly the opposite - he won't suffer for any reason. That is a total personal choice, and perhaps worth a try (but truly, I'd want to try the vacation idea first). What about a transfer into a department where you don't have to walk so much? It sounds like leaving your job isn't something that you want to do, so I'd encourage you to explore other avenues first.

    I love the trail pictures. I always hate how I'm trying to show somebody a hill, and there's no way in a photo to make it look like how "I" see it :)
    2115 days ago
    Lynn - I am so sorry you are having all these issues. I vote you go back to Kohl's perhaps with a letter from your dr. requesting for at least for the near future - you need your hours and consecutive days cut down. See what they do with that.
    2115 days ago
  • Add Your Comment to the Blog Post

    Log in to post a comment

    Disclaimer: Weight loss results will vary from person to person. No individual result should be seen as a typical result of following the SparkPeople program.