Proving Myself

Going back to work has been the best thing I could have done. It means that I'm not letting MS win and take over my life; even though I have to deal with more unpleasant symptoms. One thing I've noticed about working with MS, I feel though I work twice as hard as I did before I was diagnosed.

I think that it can be easy for people to assume that you are limited by your disability; sometimes they go out their way to do things for you, or just think you aren't able to do the same things they can. What most people don't know is that when you have a disability, you tend to work harder to prove to the people around you and even to yourself that you aren't limited by your condition.

Even though I have MS, I don't want to be just someone with MS. It's hard sometimes, when I start to hurt or I'm really tired, to admit that I'm feeling weakness due to MS. It's hard because I don't want the people I work with to worry that I'm making myself sick by working too hard, or the work is too much for me. A lot the time I try to bear the brunt of what I'm feeling so I don't worry the people around me.

I know that I don't have to push myself as hard as I do to prove myself to my coworkers, but it feels as though I still need to prove myself to myself.

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.

Remission or a New Normal?

I saw my neurologist this morning for my routine check up. As far as she’s concerned there have been no new developments or exasterbations from the MS. I still have tingling and roaming numbness through out my body, it’s sometimes like the nerves in my skin struggle sometimes to keep up with the touch sensations, but it's nothing that overly concerns her.

As she’s asking me about how I’m doing with this or that, and I have to think back over the past couple of months, I’ve realized that more and more of the issues I’ve complained about has drifted to the background. This is good... I’m at least not focusing entirely on my symptoms and they’ve lessened significantly. However, I still do not feel the way I used to feel before this all happened. Which leads me to the question...

Is remission just a new normal?

When I first was diagnosed with MS, the idea of remission was a promise of normalcy; that my body would go back to the way it had been before all of this happened. However, with my doctor immensely pleased by my ‘progress’ and the lack of new symptoms I have to wonder if this is what they would consider to be remission. If so, then I feel gipped because I do not remotely feel anything like I did a year ago.

Honestly, I can barely remember what it felt like to be “normal”, to not have my body go through weird and random lapses in feeling, or feel exhausted just walking across a parking lot in 90º weather. It’s almost impossible not to think about MS every time I take my shot or my pills because thats the reason why I take them, but it’s not a thought that’s on my mind all of the time. 

Slowly but surely, I’m adjusting to the new me, and I can’t help but think that remission is just an acceptance of what you can’t control and change. You stop fighting and railing against it, and it starts to slip to the back of your mind more and more. While you still don’t feel like you used to before all of it happened, you’re getting used to the new ways your body feels.

Is that how you live with MS? By quietly accepting every failing, every unwanted feeling, every unwanted limitation, and every dose of medication you take? 

I suppose it makes sense. It’s useless looking back to the past and how I used to feel and how I used to live. That person is gone, she doesn’t exist anymore. Even if all of the symptoms did go away, as the idea of remission promises, I will never be who I was one year ago today.

Welcome to the New Normal. At least what constitutes normal today. Tomorrow?


Well... That's a horse of a different color.

To Tell or Not to Tell

To tell or not to tell, that is the question.

As I am in the process of finding a job, I have to think about how MS is going to fit into that part of my life. The question if disclosure is a big question when it comes to if and when I tell my new employers and how that will affect my on the job.

A part of me is inclined to be honest up front because it feels almost dishonest if I’m not. MS can have an impact on my job performance. There could be days where I am so fatigued I could barely get out of bed, I have more doctor appointments that an average person, and there is the potential for other issues. Not saying anything means that I have to be vague about absences, sick days, leaving early, and that could reflect negatively on my work ethic. I could wait to get hired and then say something, but it feels like some sort of bait and switch, the company hired me with one expectation and then learns that there may be limitations on my end. Once hired, I could not be let go because I had MS so a company could feel stuck.

However...

Being upfront can definitely hurt me ever getting a job. I still cannot be discriminated against, but it is much easier for a company to find other reasons not to hire me even if I were more than qualified.

Things are getting better MS wise, and it’s getting easier to almost forget that it’s there. The chances are, there would be no issues MS wise when I start working again, but I’m anxious. The only job I had since my diagnosis was with the school and it ended with me in the hospital. That’s not a positive experience to draw from, and I’m worried that it will happen again.

So, to tell or not to tell... that is the question.

World MS Day

II suppose I should spend the last 30 minutes of today to comment about World MS Day.

Today is World MS Day, one day where people should stop and give consideration to all of us who suffer from MS.

Aaaaaaaaand.... the moment passed.

I won’t go on about how it’s ludicrous to devote one day to raising awareness about anything, breast cancer, diabetes, MS, whatever... One day where other people stop and think about a disease they know nothing about but are glad they don’t have. I wish I could spend one day thinking hard about my disease and then push it aside and it isn’t there anymore. It’s up there with Mother’s Day or Father’s Day... One day out of the year to appreciate your parents who’ve spent the other 364 days appreciating and caring for you. 

Where is that fair?

This time last year, I was just starting summer break with the kids. I had no idea that there was a World MS Day, and if I did, I didn’t give it much thought; I was too busy playing with my boys and enjoying the break from work. Now the idea of a World MS Day has a whole different meaning, but honestly, I still would have been just as fine not knowing a thing about it while I prepared for another summer hanging with the guys.

So, this is my moment where I give some thought and consideration about this disease that is wreaking havoc on my life...

Aaaaaaaand, we’re done.

Wanted: One brain, it’s grey, kinda wrinkly. I must have left it somewhere...

I am seriously starting to lose my mind, and not in the my kids are diving me crazy, I’ve got a boat load of work to do and not enough time to do it in, losing my mind. I seem to be losing cognitive functioning.

For example:

I’ve been saying wrong things with out knowing that I’m saying things incorrectly. I’ve told the kids to rinse off their dishes and put them in the microwave. I ordered a hot ‘n sour soup in stead of an egg drop soup at or favorite Asian restaurant on my birthday; I hate hot ‘n sour soup.

When I write, everything looks normal, my spelling is correct, no typos, but when I go back to something I previously wrote, it will be full of typos, wrong words, etc.

Today, I had an appointment at 10:30 in the morning. I finished a few things around the house, dishes, laundry, etc. Went up to dress, I did my hair, make up, and when I went downstairs and looked at the clock it was only a little past 10. I had plenty of time before I had to leave. So, I balanced my checkbook, contacted a potential client, packed my bag and left at 10:15. I got to my appointment, I sat in the waiting room, opened my book and started reading. My cell phone starts going off, but I don’t recognize the number so let it go to voicemail. Curious, I check to see who called and it was my doctor saying that we need to reschedule because when he came out to get me I wasn’t in the waiting room. Confused, I checked the time and it was 11! I thought I’d gotten to the appointment on time, but when I checked the call log from the call I made before leaving the house, and it was at 10:34. Somehow I looked at the clock, saw 10:15 and when I got to the office I saw that I was indeed on time.

I’d spent the whole morning thinking that I was on schedule and yet time had completely gotten away from me and I had no idea that it had; which really freaks me out.

I have a test, I scheduled a couple of weeks ago, to have a neuropsychometric exam. For awhile I’ve been having issues finding words and losing words, plus now using wrong words, so my neurologist wanted me to have this test that should determine if it’s my medication that’s causing the issue, or if it’s apart of the MS.

That’s right folks. Not only can the MS cripple me physically, it can also cripple me cognitively. Apparently it has something to do with the lesions in my brain, how many I have, where they are located, but cognitive loss is not a good sign. According to my reading, people who’ve had MS for years will start to have cognitive impact as the condition slowly progresses. It’s scary to think that after less than a year, I’m having cognitive issues.

I really hope that it’s the medication because then there’s something that could be done. First of all, I quit what’s causing the problem, and that’s easy because I don’t think it works anyway. I still have pain, I still have neuropathy, and its all getting worse.

Did I fail to mention that?

Yes, my symptoms are not only still present, they are worsening. Along with the worsening symptoms, the cognitive issues seem to be worsening too, especially if I add losing time to the list of brain issues I’m having.

If it’s medication driven, we quit the meds I’m taking and possibly try new things. If it’s MS, the damage is irreversible and well I don’t really want to go there at the moment...

They say first steps are the hardest... But sometimes you just have to jump in.

On Sunday I got back on my bike for the first time since I was diagnosed. Hobbes was driving me nuts and I figured the best way to appease him was to take him outside to ride bikes. I wasn’t sure how I would do, but I was willing to give it a shot. We ended up taking a bike tour around the neighborhood with Hobbes showing me where he likes to bike and where his friends live.

It felt good to bike again, and we had a lot of fun.

Today it’s warm and sunny out and I decided that I wanted to take a walk. I packed my iPod, sketch book, some pencils, writing journal, and a book. I went out, taking it slow, and after awhile I sat down to sketch. It was so great being outside in the sun, listening to music, and drawing. It almost felt like none of this MS stuff had happened.

I’ve come to the conclusion that I’m tired of talking about MS. 

I’m tired of talking about my health. Somedays are good, somedays are bad, on the good days I’m out and about while on the bad days I’m hibernating. When I feel good, I don’t like being reminded that I have something not right with me. Even coming off a bad episode, when I feel good I want to put the bad episodes behind me. 

I don’t want to look in the mirror anymore and see MS, and I don’t want people to only see that part of me as well. It’s like the nondescript music that plays in a department store; it’s there, you hear it, but it blends into the background and you forget that it’s even playing. I want MS to fade into the background; it’s there, I know it, but I want it to blend into my life. 

This song has been overplayed, and it’s has long worn out it’s interest. It’s time for MS to become the muzak in my life. 

This is the picture I sketched while on my walk.

Making a Comback

So, I’ve come to the conclusion that it is time for me to stop feeling sorry for myself and actually try and deal with the MS instead of letting it take over. For the past eight months, my life has been on hiatus. I’ve not done much, or wanted to do much, I’ve been holding myself back. 

Lately, I’ve started to become fed up with  myself. I’ve been sitting around waiting for something to change, waiting for the MS to settle down, but I’m starting to realize that I could potentially be waiting forever. Change doesn’t happen when you sit around and do nothing. The MS may go into remission or it may not, but sitting around waiting to see if it does doesn’t help anything. All I’m doing is wasting time, and if it isn’t going to go into remission what am I going to do, sit around and be miserable forever? The best thing I can do for myself it to make my body as strong as possible so it can last for as long as possible when/if the MS continues to progress.

So, I’m staging a comeback.

I’m not going to just sit around anymore feeling every ache and pain, wishing that it would just go away. I’m not going to stare forlornly at the array of prescription bottles, lamenting over the number of pills I have to take in a day... week... month. I’m going to have to get used to the lack of feeling in the fingers of my left hand; silver lining, I now have a barometer of how bad the MS gets. I may be verbally impaired but at least I’ll be amusing when I tell someone to wash their dishes in the microwave, or spew obscenities in order to jiggle out a word I lost. That’s just going to be apart of me, and people are just going to have to deal. It's time to start living again.

Empathy

It seems to me that a useful technological development, that has yet to be developed, would be a virtual reality simulator for doctors, giving them the opportunity to experience what their patients have to go through.

I get to go back to my neurologist this month, and as the appointment draws near, I’m feeling very anxious about seeing her. First of all, my symptoms haven’t stopped. The past few weeks I’ve had a lot of pain and discomfort, dizziness, fatigue, but when I tell her she’ll shrug it off as a natural part of having MS.

Well, thats great but it doesn’t change the fact that I’ve been in pain and will be in pain again until this stupid thing stops wreaking havoc through out my body.

I honestly believe that to specialize in one area of medicine or another, doctors should have to walk a day in a patient’s shoes. That way, they would have a little more empathy when a patient walks in and complains that their condition is causing major discomfort and, as a byproduct, upheaval in their lives. Doctors wouldn’t be able to dismiss the patient’s issues as easily.

Since most illness is internal, and outside of giving doctors cancer or diabetes or MS, a virtual reality program designed to simulate all of the symptoms and aspects of life a patient may go through, would be a helpful tool. There is a huge push to research diseases, find cures, develop better medicines, however there really isn’t a push to engender more empathy to the pain and suffering of the patient. 

New treatments are great, better medications are awesome, but the bioengineer or pharmaceutical rep or doctor aren’t going to be the ones taking said medications or treatment. Therefor, they won’t have to suffer the consequences or side effects. A doctor is like a general contemplating a battle strategy; they have to weigh the benefits against the deficits, and it there are more benefits to a course of action the deficits don’t really matter. But say that the patient who is made to feel sick by their medication. Sure, it’s supposed to help in the long run, but what about in the meantime? It’s it fair that life should stop because you’re waiting for the medication to do what ever it is it’s supposed to do?

Since there really isn’t a way to instantly get what you want, you do have to endure a certain amount of discomfort before achieving the desired outcome. This is where empathy on the part of your doctor comes in...

They may have to hurt you to help you, but they don’t have to be heartless bastards in order to treat you.

Living on an Island

Having MS, I often feel like I’m living on an island. When things are going alright, there’s a bridge from the island to the mainland. When things get bad, the bridge is swallowed up by the tide and I’m alone. Dealing with chronic pain is isolating, especially when the pain becomes constant. Unless someone has gone through something similar, there really isn’t anyway others can understand what it’s like. It’s not the pain so much that people cannot relate to, it’s the long road stretching ahead of you where this is life, this is something that will have to be dealt with forever. Somedays will be fine, hopefully the MS will settle down for a while, but ultimately the pain comes back, the achy feeling, the dizziness, the fatigue... it all comes back.

I’m coming up on my one year anniversary of being diagnosed with MS and honestly, I don’t know how I managed through one year, and I’m facing all of the other years yet to come. I know I will, manage, but in the grand scheme of things I’m still at the beginning. I’ve had a pretty rough time of it so far, and I still don’t know what’s yet to come, I don’t know if things will get easier or if there’s harder stuff I’ve yet to endure.

To be brutally truthful, I’m still very angry about what’s happened. I feel robbed, cheated out of a so called normal life. A part of me resents everyone else who doesn’t have this, who doesn’t have to deal with the drugs and the shots and the pain and so on. Because I know that most of the people around me take their good health for granted, it’s normal, it’s expected, our bodies are supposed to work. We only realize when our bodies don’t how good we had it before; I know I did. It’s hard accepting well wishes and sympathy because I can’t help but think that in the back of everyone’s mind, they’re saying “Thank God it’s not me.” And that’s what is so isolating, people cannot imagine a life debilitated by chronic illness, and they really don’t want to.

My therapist asked me today, what would I rather people say to me instead of expressing sympathy, and I honestly didn’t know. I suppose nothing, a silent acknowledgment that it sucks to be me, but there’s really nothing that can be done, so what is there left to say. I suppose what I need is for other people to accept that there is nothing that can be done, and not feel as though there is something they should do. This is life, it’s my life, my burden to bear, and it’s something that I have to bear on my own. I alone have to figure out what this means for me and how I’m going to live with it. Expressions of anger, sadness, pain are not meant to garner sympathy but are the only way I can let out what I’m dealing with. It’s something that for me, I have to express in some way so I can analyze it, mold it around, try to glean some sort of understanding.

Sometimes I feel as though I have a handle on things, I’ve compartmentalized MS as just another part of my over all make-up. Then it rears it’s ugly head and I am reminded that it’s not as easy as one might think to package it up and fit it in somewhere. I’m still not over the shock, I still haven’t entirely accepted that it’s real. I just want to push it aside and forget about it, but it won’t allow it’s self to be forgotten.

Okay, seriously, something's got to give.

Anytime I feel as though I’m making some headway, I’m starting to feel better on a more consistent basis, wanting to go out and actually do things, and then I start to backslide. 

The numbness is coming back. I’ve noticed it starting up a little this past week, but it comes and goes. The more tired I am, the more pronounced the numbness is in my left hand. Last night I went out with some friends, and when I got home, the numbness was not only really pronounced in my left hand, it was starting up in my left forearm. Once again, I was tired, it was late... but it’s still there today. In addition to the numbness I’ve started stumbling more, running into things, and generally not feeling very coordinated. I’ve started inverting letters when I type, making more errors, typos, etc...

I’m not feeling very encouraged by this new series of events. I’ve not missed any dosages on my medication, I just don’t know what else to do. One of these days, things are going to even out.

Spring Cannot Come Soon Enough

I am so sick of winter, seriously, winter can end just about any time. Unfortunately, here in Colorado, we still have a few more weeks of ‘Spring’ snow storms coming and dumping all sorts of snow. What sucks even more is when we get one of these snow storms on the back of a nice, sunny, 70º day. I mean really, now we’re just getting rude.

This winter was my first with MS, and well… Is there a manager around because I’d like to lodge a complaint.

I learned this winter that my body doesn’t like sub freezing temperatures any more than it liked the super hot, sun scorching days we had in the summer. Go figure. Where the heat makes me feel like I’m moving around in pudding, and after any small action or movement, I have to go take a nap afterwards. The cold, on the other hand, makes my joints and muscles hurt and it’s just not fun being in my own skin.

What I want is spring. Just a few weeks were I don’t feel like someone is jabbing sharp things into my body, and right before getting up to use the bathroom is exhausting. In Colorado, spring generally is  only a few weeks, and I want them to start now so I can enjoy them while I can. Because, ‘round here, Mother Nature likes to play sick jokes and sometimes the snow keeps coming right up until May, then the thermostat switches the other way and starts baking.

*   *   *   *

This August will mark my one year anniversary being diagnosed with MS. Perhaps I should have a party, with cake… or maybe Guinness, lots and lots of Guinness, along with Jeremy’s black and tan brownies.

Mmmmm.... Black and tan brownies....

I wonder what’s for breakfast.

What some cheese with that whine?

I don’t like whining; I especially don’t like feelings as though all I do is whine about having MS. It sucks, we all know it, time to move on. However, every so often, a little bit of whining is good for you. When you have MS, it’s all about doing things that are good and beneficial for yourself. If people don’t like it… well I know of a bridge they can all go jump off of.

Today, I feel like bringing out a little whine. Keep in mind, you can’t just bring out any old whine. If your gonna whine, make it a good vintage full of body, with the hint of sarcasm and just a few top notes of snark. 

I have to say, when your actually feeling good for a change, nothing takes the air out of your tires faster than waking up to a handful of pills and an injection. I think that the hardest part of this whole longevity issue is the fact that in order to keep things in check, I have to continue to take medications; even on days when I feel okay. Nothing says that there’s something wrong with you more than the daily hoards of medications you have to take in order to be well or stay well. 

I tried throwing my hands up in the air, saying “Screw this, I’d rather deal with this on my own”, but the end result landed me in the hospital. It’s hard to say if it was my rebellion against my medication or the fact that I was severely taxed and stressed at my job that was the culprit; it could have easily been a combination of both. But, I once again have to wonder at the benefits of taking medications that, on a whole don’t seem to be working. The only thing keeping me going every morning when I face the line up of pill bottles is the fear of ending up back in the hospital. While I’ve gained back most of what was lost before, I still do not have sensitivity in the finger tips of my left hand and some in my right. What more could I lose if I have another major relapse? I suppose staying on the medication is supposed to prevent a relapse from happening, but what I wouldn’t give to not wake up to my reminder that I have MS, even if it was just for one day.

Enjoy the little things

Ever since I had to stop working after my relapse, I’ve become a hermit. I stay home most of the time, I rarely go out anymore. Now, all this is fine sometimes being a hermit isn’t a bad thing, but sometimes I’ve found it more difficult to get up the energy and desire to go out and do something fun.

For the longest time, even before I had to stop working, I’d wanted to have hot pink highlights in my hair. At nearly 33, you would think that I’d gotten all the silly, ‘lets dye my hair weird colors’, out of my system. Since being diagnoses with MS, and more recently having the relapse, it’s become more important to me to enjoy the little things and not let myself be held back by the perceptions of how a married 30-something mom of 2 should behave. 

You just have to be a little silly every now and again; it’s good for you.

So, I now have a head full of very bright pink hair, and to use a bad pun; I’m tickled pink. The funny thing is that the simple (okay maybe not THAT simple) process of dying my hair has perked me up. I don’t necessarily want to stay cooped up inside all day. No matter how much you can say that you do something  drastic (say dye your hair a color so bright you glow at night) just to entertain yourself; you really want to put it on display. 

Sometimes you have to do something just a little crazy to jolt you out of a rut. Life isn’t all about living in a cave.

Here Today, Gone Tomorrow

One of the things I hate about MS is how one day I could feel good, almost normal, and then by the next day I feel like crap. It’s one of the most annoying aspects of this crappy disease. 

For Example:

Yesterday I felt good, almost great, and it was nice. For the first time in a very long time, I didn’t wake up in the morning still feeling tired. I was able to work on my novel, some illustrations, and some freelance articles, in addition to doing the laundry and dishes. I was even up to cooking dinner. However, today is a totally different story as I feel yet another cold coming on, my muscles keep getting tighter and tighter, and I’m feeling pretty miserable over all.

Having MS feels like your imprisoned by your body. Yesterday I was allowed out after a long time of being shut up, given the opportunity to enjoy things, then today I’m shut back up in the prison. 

The key to surviving life with MS is to not take the good days for granted, because  you don’t know how long they’ll last or when you’ll have them again. However, it’s really hard when you get little teasers of what it feels like to feel well only to have them taken away once you’ve wetted your appetite. 

I’ve only had MS for less than a year, and I keep hearing about how things should eventually improve, and my good days will become more frequent and last longer;  but I’m starting to wonder if it’s ever going to happen for me. Seven months of not feeling well, is taking it’s toll. It’s hard to see the value of taking handfuls of pill every day, shooting myself up with meds, and going to therapies 2 to 4 times a week. There is no magic pill that takes away the symptoms and leaves me feeling good, but damn I wish there was because I’m starting to forget what it feels like not to feel crapy.

A Happy Healthy Individual

I am a happy, healthy model of a healthy individual,

I’ve information overload on matters quite conceptual,

I know the fathers of psychiatry, and quote the theoretical,

From Freudian to Jungian, and Dr. Phil rhetorical;

I’m very well acquainted too, with all the books liturgical,

I understand perceptions, both real and imaginable,

About the latest studies I’m teeming with a lot o’ news,

With many misleading facts about why we do the things we do.

I'm exceptional with smoke and mirrors, and being very devious;

I know the things to say, I’m really quite fastidious;

In short, with information overload and matters quite conceptual,

I am a happy healthy model of a healthy individual.

Written by Sabrina Ehlert, in the style of Gilbert & Sullivan.