Medication

Before MS, I rarely saw a doctor or took medication of any kind. In fact, it was telling about how bad I was feeling if I took so much as an Advil for a headache. Now, however, I've taken more medication in one year than I think I've taken my entire life.

That is one of the hardest things about having a chronic condition, the medication. You take it because you know that it's supposed to help, even if you can't see or feel the benefits; but at the same time its a constant reminder that you're sick even when you're not feeling bad.

Every time I reorder my Copaxone, which is the disease modifying drug, I'm asked if I ever stop taking it if I feel better. I always answer the same way, "No", but honestly the better I start to feel the harder it becomes to want to take the medication.

For one thing, it's an injection, there is absolutely nothing pleasant about having to stick a needle into yourself every day.

Secondly, the fricken shots hurt! I can give myself the injection fine, but the site reactions that occur right after the shot is administered can be downright painful. Not only that, if I don't do it just right I'm left with all kinds of bruises that last weeks at a time.

So yes, I do struggle to take my medication when I feel better, but I challenge anyone to fine someone who doesn't.

Try as I might to push MS to the back of my mind, and more often than not I'm successful, but every time I open a bottle of pills or prep myself for an injection, the reasons why make themselves known front and center in my mind.

Last year I said "screw it" and stopped taking everything, a few months later I was in the hospital. Was it because I stopped taking my meds? Or was it because I was over stressed, run down, and still reeling from the diagnosis?

The world may never know.

Apart of me, once again, wants to say "screw it what am I really gaining from all of this anyway?" I just want to lead a normal life that doesn't include having to shoot up every day or take enough medication to stock a pharmacy. The only thing that stops me from quitting the drugs is the memory of ending up in the hospital while they pushed this medication that made me feel like shit but was supposed to boost the good parts of my immune system that wasn't attacking my nerves.

I just can't see how it's possible to completely push the fact that I have MS to the back of my mind when I have a daily reminder that it's there.

Of all the aspects of this condition I've come to accept, the medication piece is still the hardest for me to completely come to terms with.

Hiking with MS

So, after my sojourn to Yellowstone the other week, I cannot go back to not doing active things because I’m tired, or I hurt, or anything like that; once you’ve spent an entire week camping and hiking you kinda lose the “I have MS” excuse for getting out of activities.

This is good, it means that now I’m home, I can’t revert back to the way things had been for the past year. 

That being said, I have a few thoughts on going hiking with MS:

1.  Know where you are going and the kind of trail you will be on.
2. With no exception; every rock, tree root, and divot in the trail WILL try to trip you.
3. The wildlife you were so eager to try and see will only come out while you are watching your feet for the aforementioned rock, root, and divot. The moment you look up, they mysteriously vanish.
4. Pick the right shoes. This goes way beyond the whole ‘shoe fetish’ issue; any real hiker will say the same thing. However with MS, the wrong shoes can mean the difference between being stiff the next day or completely unable to walk.
5. Don’t let the slightly chilly, overcast day fool you; the moment you hit that first steep incline, I don’t care if it’s snowing, you will get overheated.
6. It doesn’t matter how great your big, heavy, ultra professional digital camera is or how it takes fantastic, high resolution, pictures; after 7 miles it’s like carrying a 5 pound dumbbell on your shoulder. Next time, opt for the smaller, less professional, camera; it’s not like you’re going to actually get to see any wildlife staring at your feet.
7. Leave your mopey, whiney, preteen at home. There’s only room enough on the trail for one complainer and you called dibs.
8. Pick a trail that takes you uphill at the beginning of the hike. That way, as you head back, you’ll have gravity helping to propel you forward.
9. You’re not as spry as you used to be; just because your son was able to nimbly negotiate a mud bog without falling in doesn’t mean you can too.
10. When you get home, call dibs on the first hot bath/shower. Sure everyone else is tired, dirty and sore, but they weren’t the ones who mistakenly wore the wrong shoes or foolishly tried to follow their kid through the mud.
11. Finally, while soaking in the tub, and using up the hot water, mentally curse the trail guide you purchased the other day. There really needs to be a guide book that has a 'fat bastard section' rating trails based on how an out of shape, overweight, individual with MS would do on a hike.

Yellowstone: A Week of Sightseeing, Critters, and Milestones

Last week my family and I went on a week long camping trip to Yellowstone National Park. We had started planning the trip back in December, and after my relapse in January, there was some concern as to whether or not I’d be able to go. However, I was excited to go and I wasn’t going to let what happened to me stop me from going on a trip I’d been looking forward to going.

As it turns out, going to Yellowstone was a great and much needed experience for me and for my recovery. The way my family and I travel is to go flat out and see and do as much as possible because going on a vacation is a luxury for us; Yellowstone was no exception.

Dragonfly. Taken on our hike.

On our first day in the park, I went on my first hiking trip; a one mile trek to see a potentially interesting site. My husband and kids were great, letting me set the pace. Being a photographer has it’s advantages because I would stop to photograph something and also give myself an excuse to stop and rest. We made it to the lake, which wasn’t as interesting as I’d hoped, but I was proud of myself for making it on our hike.

We saw this guy on our way back.

The rest of the week was like our first day. We’d go around checking out the sites, hike, and try to see as much as we possibly could see. My body took the activity well, which I found surprising. I started to realize that some of the limitations I’ve had were self imposed; I was too scared to push myself, scared of how I would feel, scared of the pain. 

There is still pain, but I think a part of it was the normal aches and pains of someone out of shape and not used to physical activity. There were MS related limitations, a major one being heat. Yellowstone’s weather was cool, consistently in the 60’s or 70’s; however body temperatures rise with activity and in high altitudes the sun beats down intensely. There were a few times when I was overcome by heat, and a couple of times I pushed myself to potentially dangerous levels.

This was taken at Mammoth Hot Springs.
This site was off the beaten path, and required a significant hike to reach

Still, I think this trip has started some wheels in motion that I can’t stop. I know now that I can’t use MS as an excuse for not being physically active, that I can and should exercise, and while I have to take heat into consideration, I can (with some strategies) work with that as well.

Yes, there will be pain...

Yes, there will be fatigue...

My body still cannot take continual strain and activity, I have to listen to by body and know when to stop; I will have to give myself time to rest.

I’ve already accepted that pain will always be apart of my life, and I’ve made the conscious decision to live with it and not allow it to get in the way of what I want to do in life.

Yellowstone was a fun week. I did push my body hard, maybe too hard, but all in all the whole trip was successful, fun, and it marked a new chapter in my life with MS. 

This picture is my favorite. The Grand Prismatic Pool. I climbed up the side of a hill, no path at all, to get this shot.

Oh, and the critters? We saw quite a few of those as well, including a moose that was something I really wanted to find and whose search facilitated a lot of the hikes we went on...

We met with success on our 'moose hunt' on the last day.
This gal we saw with her calf having breakfast.

One step forward... Two steps back...

I started back at work this past week and I’m loving every minute. The past seven months since my relapse has felt as though I’ve been living in a fog. I completely retreated from almost everything in my life, and while that sounds bad it was something I needed to do.

When I got my official diagnosis that confirmed my worst fear it was the day before returning back to work after the summer. I had spent over a month going through so many tests to try and pinpoint what was going on, and I had almost no doubt that the tests would come back positive, but it still took the wind out of me when I got that call. Despite the time before to think and prepare myself for what I was going to have to deal with for the rest of my life, I still hadn’t really digested the reality of having MS. 

Going back to work the day after the confirmation, I didn’t let myself really deal with what was happening. I was sad, I was angry, I was in denial... And I had no idea how I was going to live with it, I didn’t know what it meant for me...

The time I’ve spent not working and recovering from a very scary and debilitating relapse, I’ve been able to start to figure out my new way of life, and going back to work has been the first real step towards getting my life back.

However, it feels like the MS has other ideas, and I’m getting more annoying flare-ups and symptoms. Since this is common to have pseudo exasterbations, and frankly these issues have never completely gone away, I’m trying not to let it slow me down. This is apart of my new life; I work a little to hard, do a little too much, and my body lets me know it disapproves. However, stress is inevitable, it’s unavoidable. No matter where I worked, there will be stress, and if there wasn’t then the job would be dead boring. 

Still, it’s scary... I worry that for what ever reason, I wont be allowed to have a normal life... that my body, this crappy condition, will always plot against me. I try to push that out of my mind, not indulge the fear, not give into it... But, it’s still there, and I worry about how it will impact my job, and that maybe they may rethink their decision to bring me onboard if it’s going to wear me out or cause issues with my heath.

So, this is where perseverance comes in...

No matter what happens, what curve balls get thrown my way, I have to fight back and not let it take over. I have to keep saying to myself that I will NOT let the MS take away the things I love; not my art, my writing, or my job, not to mention my kids and my family. 

I just want my life back, even if it means accepting things that are not pleasant... I won't let this beat me down, but I hate the fear that resurfaces every time one of my symptoms starts to get a little worse. 

One Year Down

It’s the 4th of July... Last year at this time was the last time I felt ‘normal’. I haven’t officially hit the one year anniversary of my diagnosis, but I think it bears commenting that its been a year since I didn’t have the numbness, fatigue, spasms, and pain. 

This past week has been difficult. After a few weeks of minimal issues, things have been creeping back up again.

I’m frustrated... It feels as though I start to move forward with my life and shit starts up again.

I got a new job, a job I really wanted to get. I will be working as a behavior coach, helping emotionally challenged kids get back onto the right track. Working at Altona really wore me down and it got to me; but I love working in a school with kids... I don’t think I should have to give up doing something I enjoy doing because I have MS. What I’ve learned this past year about living with MS is that I can’t let it stop me from being me. I’m finally getting to a point where I’m tired of wallowing, I’m tired of always feeling bad, and I’ve taken steps to get back to my life. It really makes me angry because I feel as though I can’t catch a break.

It also makes me sad to think that it’s already been a year... one year down...

I guess I just need to let myself feel it... and hope that I will still get to move forward.