multiply sclerosed

{October 26, 2012}   Hidee Ho

So sorry  I havent posted in quite a while. I have been, well, busy I guess. Family and work, feeling good and having better things to do, or feeling like hell and not being able to get out of bed. Right this very moment I feel good, MS good anyway. I am tired, which never really goes away and I am a tad sick to my tummy, like I feel a stomach flu coming but staving it off as best I can.

In the past month and a half I have been a horrible medicine taker. I went into “silent rebellion” mode and have not been taking meds as directed. LIke I took my shot every other day, because I just am so over it. I was tired of it. My belly bruised and sore and I don’t want it. But I rest assured I am back on my schedule and am getting my injection done like I should. I started taking my neurontin once or twice a day because I just can’t stomach my med anymore. Trust me I found out he hard way what happens of I don’t take it. Things start to hurt. There is a reason I am supposed to take it, so I am back on that track.

Thats all for right now TTYS 😉


{August 23, 2012}   Who would win this battle?

Godzilla: fire breathing uber-lizard hell bent on japanese destruction
King Kong: skyscraper climbing fur ball with a penchant for the ladies


{August 16, 2012}   Of Egg Salad and Everclear

While making egg salad and listening to Everclear,  I was attacked by the blogging muse and have found my inspiration. I have been seriously uninspired lately, to the point I was thinking of pulling the plug on Multiply Sclerosed.  It seemed I had run out of things to say, well thanks to some old songs and therapeutic chopping of eggs, I found I am not done, not even close. I am not bound by the confines of my Multiple Sclerosis symptoms and life with them. This is my blog, I can talk about anything.  All my thoughts and experiences, likes, loves and loathes are Multiply Sclerosed simply because they are mine. So with that in mind expect some changes, bloggy buddies. For starters… I know who is reading, so its time you start speaking up. We will be having required audience participation for certain blog posts. We will be doing ” who would win this battle” I will give two opponents, stats and facts, open the field to discussion and then choose the winner.  I have some new thoughts in my head for some posts that need writing. I am not the only person my disease affects, I am going to start trying to think about other perspectives. Parents, friends. children and spouses, they all need a voice.  It’s nearly football season, as a native Clevelander and die-hard Browns fan, you can expect sports talk.  You can expect great things from this Multiply Sclerosed girl.

So, thank you, egg salad and Everclear, thank you for flipping on the light.  With that I am going to eat my lunch and charge the iPod, so I can get on with blogging.

{August 13, 2012}   Six Months

Well well well, here I am six months post Multiple Sclerosis diagnosis. Six months ago I was so sick that I could hardly walk, I couldn’t feel anything aside from buzzing, zapping and pain. Six months ago I was changed forever. In these past six months I have started an intensive course of medications, had physical therapy and have accepted that I am not who I was. But that is not all together bad, in fact I think I am a better version of myself.  I am now a blogger, an MS advocate, a member of the UCrew ms walk team, I am a mom and a wife with an incurable disease and the disabilities that go with it. I am an x-ray tech, a football fan, a geek and a gamer. I am still me. With limitations that I must abide by, I still can do the things I love. You see MS does not define who I am. It’s an integral part of my life, but it’s not centric. Yes as I  write this I am truly in terrible pain and my entire body is numb but it will at some point pass and I will have a nice respite from it all. But the truth is I have to keep going, I have to be mentally tough. I cannot concede myself to Multiple Sclerosis. I must control my destiny for as long as I possibly can. But I also must let myself grieve and cry and be pissed at the whole thing. Its natural and normal and it helps. I started this blog to help express my feelings and organize my thoughts, it has helped me cope and accept and find peace. There are days that I just don’t know how I can possibly go on. There are many days that I am sure that I can’t. Those are the days that I have to force myself out of bed and down the stairs and out the door. I have to convince myself several times a week not to try to get someone to work for me. I have to do this. This is my life, my family depends on me, I depend on me. If and most likely when the time comes that I am no longer able to function on the level that I do, I don’t want to ever think that I didn’t give it my all. It may not seem that I am doing much, this is where accepting my limitations come in. My mornings I get the girls up for school do their hair and make breakfast. I spend the rest of the day resting so that I can go to work that evening. On my days off I will run some errands if my body is up to it. This past weekend I made dinner for the fam and g-parernts, and it took everything out of me. But I loved it. I had the energy to do it, so I did. Sadly those meals have become far and in between. To me preparing a meal for the family is the best gift I can give of myself, I love to cook, I love to gather people together. I cook with love. I just can’t do it as much as I used to.  But I know that when I can I will and it will be fantastic, a sentiment, I think holds true for all things.

So if I say come over I am cooking, get in the car and come eat…who knows when the next time will be 😉

***this post was started several days ago, when I was having a tough bout with back pain as well as numbness and tingling from top to toes. I have since started to feel better, my energy is good and the pain, while present, its tolerable.***

{August 9, 2012}   Its like a heatwave

Burning through my myelin…ok the rythm might be off but the sentiment remains. Oh triple digit temperatures for the umpteenth day in a row…how ye vex me.

I am so fricking uncomfortable. My thermoregulators are beyond a shadow of a doubt DEAD and not regulating a damn thing. I have two temperatures right now, hot and el scortcho. Nothing short of skinny dipping in the arctic ocean can cool me.

Work has been the most challenging for me. The department is extremely hot, air circulation is non existent, and we have been busier then ever. I have a fan, which is awesome, if I were able to sit in front of it the entire shift. My bestie bought me a frog togg, it is a scarf like thingy that you soak in water and as it evaporates it cools you down. She is no less than a superstar in my eyes, just for even thinking about it and trying to help me cope. The frog togg has helped to a point, but it seems I get too overheated for it to work effectively. And in truth the feeling of something around my neck makes me all claustrophobic, all kinds of hinky. Its a no win. I am trying, I am trudging, but I am melting quick.

And that is what it feels like. I am going all wicked witch of the westy…the only difference its the fire not the water that is my undoing. Every symptom I have goes up exponentialy with my temperature. I have to plead with my legs to move. My mind is just gelatinous, I just cannot think straight. The zaps in my hands and back and feet and knees and every little joint in my fingers and in my toes are…ugh I don’t even want to talk about it.

The best part, bloggy buddies…there is nothing I can do about it. I take all the proper cooling measures and hope for the best. I truthfully don’t have much left…even more truth be told,I had nothing left days ago. But I have to press on.

I was asked just the other day if I do this…work when I feel poorly to prove something. It wasn’t meant snide or snotty in any way, shape or form, it was an honest question. The answer is a huge yes. Ofcourse, I am trying to prove to myself that I can still do it. Every shift I get through is another hash mark in the win column for me. But now, I am wondering, if I am like the wide reciever who has had their bell rung too many times and still refuses to give it up. Am I pushing too hard, am I doing too much harm to myself by pushing so hard? Will I be able to tell when its time to hang up the film badge and rest my body. Or am I going to wait until I cannot get out of bed and am flat on my ass like I was in February. I don’t want to get that bad again. I know that I rebound just fine after I get rest and my eternal internal flame gets extinguished. But am I doing permanent damage by subjecting my body to the conditions every single day? I don’t know.

What I do know is that I have one more day to work this week and then I am off three of the following four. I know that I can eek out one more shift in the sweltering sauna of an x-ray department I so love. I know that I have a stellar support system and we will get through it together. So keep the gatorade flowing and the fan blowing. I gots this…people…I really do.

We sent our lovely daughters off to school on Monday, 1st and 3rd graders. Both of the girls are so smart and eager little learners and they make me proud everyday. I won’t fool anyone into thinking they are angels, far from it, but they are kids and mighty good at it. So, as per usual dressed in new outfits, had their picture taken by the tree, hopped in the family truckster and headed off. It is always chaos the first day, people both tall and small bustling about trying to find classrooms and line up spots. Since I managed to get over myself we were able to park in a decent place, so I did not have far to walk. (Ok I am glad I got my placard. Its not a sign of defeat, it an aid to success!)  We found the girls’ classes and line up spots were right next to each other, how fortuitous. So hubby saw one to her room and I the other. We listen to the teacher welcome in a new school year, and then get the heck out of dodge.

Ofcourse the first day without kids we had doctors appointments, x-rays and grocery shopping. But we had so much fun. Hubby and I just hanging out without any sense of rush or stress.  While we were geeking out in the magazine aisle of the grocery store it occured to me that we have not had this type of bonding time in ages. This is what our relationship was built on, common geekiness and the joy of sharing it together. I know it may sound weird but that’s it. Its what we are about. Comic-con updates and fantasy football. Doesn’t get better than that in our world.

After the errands were finished we had some time before the kids needed to be picked up. Sweet mother of awesome…an empty house. This gave us some much needed alone time, time for just the two of us. We were connecting again. Connecting not as parents, not as a married couple or even as lovers, but as two people who truely are eachothers’ other half. I felt a sense of relief and calm. Like we have synched up again. Not that we were so terrribly out of step, just a little behind eachothers’ beat.

A week ago I was so down and so miserable, and just that quick, a corner is turned and outlooks change. I still feel weak and my body is slow, my mind still gets jumbled when I have it try to think too fast and yet its all going to be okay Things seems not so bleak and so much more promising. I, for the forseeable future, am not worried about a thing. We are strong for eachother in this crazy adjustment time. Six months I have had Multiple Sclerosis and its been a roller coaster for us all. I feel as though we are pulling up to the straight away and are coasting for bit. That is such great feeling.

So we picked up the girls and as per usual we went to dinner, Jonny Rockets burgers fries and milkshakes a total blast!

I will say in all honesty this was the best day we have had in many years. Such simplicity but I am sure you will agree,fair readers, simple pleasures are the best.

Mostly it sounds like whining, bitching, and whimpering.  That’s the long and short of what has been happening with me. The air has been let out of my acceptance balloon and I have swirled down into a deeply funky depression.  People, I hate feeling like this.  I feel flat, I feel despair, I feel pain…
lots of pain.

All the things we don’t talk about are just welling up and ready to overflow. But seriously, do you want to hear about constipation or spastic bladders. Probably not. Or my left leg that drags and my left foot which sorta gets stuck causing me to stumble. Oh or how about the lack of brain to mouth communtication, tripping all over my tounge and being completely unable to come up with words to finish a sentence I started. Try to get out of that gracefully. And the headaches, they are relentless. Havent been headache free in two and a half weeks. So back to “Q” I go.

I have taken steps towards making things simpler. I got my disabled parking placard and have been eyeing a cane and considering the benefits. So this means I have basically gotten my head around my disability and instead of relief I feel intensely sad.

So what to do what to do? I truthfully think a good cry would do the trick, dispense of my funk. But somehow I can’t seem to get the tears to come. I wish they would. Am I numb to this already? I guess maybe I am or perhaps I feel so dejected that I am apathetic and just don’t care. Acceptance is supposed to be a release almost joyful thing, right? Its not, at least its not right at this moment.

I have lost my smile and am getting tired of trudging on like a good soldier and keeping up apperance. I am tired and painful and my bowels don’t move and my bladder moves to much. I don’t walk straight and I don’t speak well. I am disabled. Ok there I said it. Fine. When will I be able to make peace with it?

{July 21, 2012}   My Husband

Seriously, and I know most wives are of this opinion, but my hubby is the best. He takes such good care of me. He stays on top of my medications for me, makes my doc appointments if I need him to, makes sure I stay cool and hydrated, go to sleep at a decent time and wakes me if I am having a nightmare.

But its more than that. That’s just support of my physical well being. Its the support of my mental well being where he really tips the scales. More than anything, I really, really like him. Ofcourse I
love him that’s not what I am saying. I have said this many times to many people, when all the lovey dovey crap is over you need to be with someone you can talk to. Someone you have fun with, someone you can laugh with. We have a blast together! We geek out together, embracing our nerddom. He indulges me and my latest crushes (ahem, Jared Padalecki) while I indulge him and his latest ps3 (call of duty…) obsession. I pretend to be bored with the latest b-movie he wants me to see while he pretends to be completely disinterested in my costume dramas. All the while we are each enjoying the others choices. Come football season we operate on the same plane…there is nothing more important. And if by some odd scheduling mishap our teams play eachother… the gloves come off, smack talk begins and we throw one hell of a party!

Don’t get me wrong its not all fun and games. When it hits the fan he can shift into hero without skipping a beat. He’s my sounding board, knowing when to zip it and let me bitch, let me cry, let me ramble. He also is pretty good at telling me to suck it up. If he didn’t, well, I would be a big heap of useless. But I need that motivation. Even if I am just pissed at him for being such a pain in my ass. The truth is I am thankful he pushes me. I need it 

He is the biggest sucker for our baby girls. Not to mention our pup…but I digress. They don’t know it (or do they) but those two play him like a fiddle and as hard as his resolve might be, he cracks nearly every time. But I know, to my hubby there is nothing more important than those little girls.   

I love him so much, I like him a whole hell of a lot too. I count myself lucky to have him. I know that a chronic illness and the unpredicabilty as well as the debilitating nature of Multiple Sclerosis can wreak havoc on a marriage. Some would not be able to withstand it. That is not a worry I have ever had. My hubby has not only accepted my disease but has embraced it. He was the one who encouraged me to start bloggging. He is the Ucrew team captain for the MS walks, he designed and ordered the t-shirts for the team. He gives me my injections when I need help, all the while making crude jokes. That’s what he is best at. Lightening up a crappy situation making the best of the cards we have been dealt.

And that, bloggy buddies, is what it is all about.

{July 20, 2012}   A change will do us good

Changed our lay-out. What do you think?

{July 19, 2012}   Sitting in my doc’s office

Day 2 headache-a-palooza. And trust me I have tried everything. Stretches and ice packs and medication. Can’t break it up for more than an hour at most. I have ringing in my ears that is deafening and have had loud swooshes and bangs as well. This is something that is breaking my spirit
So here I sit, waiting to be worked in.  The office is too warm and the tv is too loud.  I wish I could lie down. And patients. Sitting in close proximity and yet not togther. Every person here for one malady or another.  All comrades in illness and yet not an eye shall be met. Not a kind word exchanged. Could we benefit from a random chat with a stranger? I think we could but society dictates “get in your chair and don’t make eye contact” I am not ashamed that I am hurting nor should any person here.

But quietly we sit head in our books, eyes on our phones. A touch a word a glance to ease the mental suffering we face.  Can we not spare a spec of humanity? Not today it seems. Perhaps tomorrow

et cetera
%d bloggers like this: