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Friday, March 29, 2013

Bears on the Couch

Yeah so I dropped the ball on posting day 3 of  Steroidlandia.  That is the day when my mind is so fogged and my emotions are all over the board.  Believe me it was probably in everyone's best interest that I didn't post.  I know I tend to ramble, but the ramble potential was off the charts last week between the steroids, and the Ambien, let's just say things were a bit surreal. 

My kids and husband still laugh about the bears (pillows) I was hiding from in the living room.  Yes there were bears (pillows) on my couch and I will testify in court to that fact.  Apparently I woke up in the middle of the night screaming about "the people", I don't know what people, but I was really angry about them watching me. Anyway, my dear hubby thought I would be much more comfortable on the couch, which really means he had to go work early and wanted to sleep without me freakin' out every  five minutes.

Well he obviously didn't know about the bears (pillows) sitting on the couch so when he carried/dragged me in the living room and I threw myself on the floor he was quite shocked. I knew the only way they wouldn't eat me is if I lay on the floor under my special blanket.

Needless to say that was the last time I took Ambien.

I did indulge in some self induced guilt trips, about being a burden, but my family snapped me out of it right quick.  They're great like that.  They remind me this set back won't last forever and things will be back to normal soon.  I'm still not one hundred yet, but I'm not sweatin' it....too much.

Hope to get back to the running trails next week. I have to keep in shape just in case the bears come back you know.

Wednesday, March 20, 2013

Day2 and an example of grace

I have to say day 2 of Solumedrol hell is going swimmingly.  As in my head is swimming from the crap in my system and my stomach is swimming from all the water I keep guzzling. To distract myself as I munch on saltines I look around the limited view from my infusion cubicle and see nothing more interesting than my devoted man reading by the faux fireplace.  So I start to listen to the conversations seeping in from around me.  I have always been an evesdropper.  I can say it's out of curiosity and I like to learn as much as I can about my fellow man, but the truth is I'm just super nosey. 

What I hear from the other side of the cubicle truly warms my heart.  From what I gather the woman is in her mid 80's and in for a blood transfusion, but is dehydrated. I groused yesterday about having trouble getting my pic line in yesterday, but this poor woman was really having problems.  Bless her heart though she never once complained and took it all in stride. 

They even had to call up a specialist to do an ultrasound thingy to find a good vein deeper in.  Now when I heard that term "deeper in" my legs went limper than they were to begin with.  All I could do is think OMG this poor woman, but she was a trooper and just joked along as if to make the young nurse more comfortable.

I realized at that moment this is what you call a woman with grace.  She was what I strive for in my everyday life and hope to be like in my advanced age someday.

My long suffering awesome Hubby








Tuesday, March 19, 2013

Day1 Steroids and Romantic Musings

Day 1 of my 3 day tour in Steroidlandia.  My fabulous husband came home from work to take me.  I am going to a moment to shamelessly put a plug in for this man.  If you have read any of my past posts you know I have been fighting the monster for almost 22 yrs.  Keith has been my knight in shining armor from the beginning.  We met while I was just  at the tender age of 16.  To be honest I had already, in the vernacular of an 80's teen queen, scoped him out before we actually met.  I told my cousin she needed to date his brother again and hook me up.  As it turns out they did start talking again, and on the night I met my man we all went to a haunted house.  Of course I was convincingly scared and had to hold on to him for dear life.  I smile whenever I think of that night.  He was my protector from monsters 25years ago and is my protector from the monster now.

Now Prince Charming wasn't always so charming after my diagnosis.  There was a lot of upheaval for two young people at the ages of 20-me, and 25 him, just starting out in this quest called life.  I was determined to be strong and not let anything or anyone keep me down.  He had a hard time understanding I was scared absolutely shitless and thought I was dying.  We were miserable, tired and broken hearted, and not on the same page at all, but we weren't quitters.  We kept trying to make the relationship work.  We were determined not to lose each other.  Problem was I was really good at pushing him away with angry words and any object I could turn into a projectile,  and he excelled at shutting down.  We still never gave up on this relationship, and when a shit storm hit we were each other's umbrella.

We went on to get married  after about six years of living together.  Our wedding was in the month of  December so I wouldn't get overheated in my gi-freakin-normous wedding gown.
Just because we were married our problems didn't magically go away.  My condition kept getting worse and I kept getting angrier.  We continued to plug along and eventually started a family.  We are blessed with two daughters that are our lives.  We still have issues, but instead of shutting down, or throwing fudgesicles at each other- yes, that really happened and we lived with the fudgy spot on the wall for months because we refused to wash it off- we turned to a proffessional for help.  She has helped us look at what the other is going through.  I realize it may be hard on me to be in the middle of an exacerbation, but it's just as hard for him to be my caregiver and take over all the responsibilities I have at home plus work his own job.  We still stumble and slip back into our old ways once in a great while, but we can recognize it for what it is and move on. See I'm not the only one "growing up with MS", my whole family is.

Ok enough mushy gushy stuff on to the dirty details of.....duhn duhn duhhhhh.... Day 1 of Solumedrol.

 All went well except for the four blown veins it took to get my IV started.  I always joke with my family about my super strength-i have a lifelong superhero fascination/obsession- and almost have myself talked in to the fact that I have super powered veins that won't allow the steroids to enter my system.
My hubby thinks I'm just delusional and nuts, but he's  not complaining when he sees me in my Wonder Woman panties ;) 





Monday, March 18, 2013

THE call....

I had to make the call today.  You know,  the one to Neurologists office to tell them you are having an exacerbation.  I hate making the call.  I will put it off, and stump around trying to convince myself that this time is not so bad, all the while holding on to the dining room table, doorways, the tv stand and recliner for support during my loop of denial around the house.  Usually somewhere around my fourth lap, when my footsteps fall harder than Godzilla's in Tokyo, my husband will say "Hey Slappy Mcslapperson, call the doctor".

Well balls!  The call always leads to IV steroids.  Which always leads to, "oh crap, I don't have anything in the house for Lilli's lunch, how am I going to pick up Abae and Erica from school?,  Keith, you can't miss work to take me everyday, we have no clean towels, blah, blah, blah". It's the mental list of "disasters" that I come up with to not do the Solumedrol treatment.  It never holds up, and I fold like a cheap suit.

Solumedrol is the name for methylprednisone, and is administered by IV drip for about an hour each of the 3 days of treatment.  It drastically shortens the time an exacerbation lasts.  Oh yeah and one really important thing is that IT SUCKS.

Don't misunderstand, it really does help.  The days during the infusions  you almost feel like you can do anything.  Nothing hurts, you are not tired, your junk drawer gets cleaned out and you feel good.  Really good.  That is until the day after your last treatment and it starts to feel like you are  shoplifting tennis balls in your armpits, if anyone looks at you funny or otherwise, you will rip their throat out, and then cry hysterically about it after.  Better hide the Little Debbies, pretzels, chips, candy, and cake topper sprinkles because you will eat them all, and then cry hysterically after.   I now try to stock up on carrots, celery and peanut butter.  Anything that crunches takes the edge of for me.    Sleeping will be your best relief until you wake up shaking and soaked from sweating.  I always keep an extra set of pjs right by bed for a quick change.

I have learned over the years what expect from this treatment.  I now know not to plan anything for at least two weeks after the last day of treatment.  That seems to be how long it takes to clear my system and for the withdrawls to subside, plus my immune system will be somewhat compromised so it's good to steer clear of large gatherings.  Water is my best friend, both for drinking and cool relaxing baths.

Tomorrow will be my first day of this fun, at least I'll have clean junk drawer to show for it.

Sunday, March 17, 2013

My cane gives me swagger

I'm sitting here not being able to get around very well.  I have had to pull out the dreaded cane and try to look all nonchalant when I walk around with it.  I do think it gives me a certain amount of "swagger" though.  You would think after 22yrs of this crap I wouldn't be so self-conscience when my gait is off and I need assistance.

I am though. Mostly because I don't like the attention it brings. I don't like to explain why I need it this week and not next.  There's an old superstition that you don't say the name of evil so as not to draw it down on you.  That's how I feel about it sometimes, don't think about it too much and the monster will leave me alone. My logical mind realizes this is crazy, and it's my logical mind that is writing this blog, while my Polish Busia mind is crossing it's self and throwing salt over it's left shoulder.

 I  really have gotten better about accepting help and accepting the fact that I need cane sometimes.  I even bought one that is hand carved and completely unique from a talented artisan several years back at my favorite Renaissance Festival.  Now when I carry it I get compliments on the cane and not many "what did you do to your leg?" comments.

The one thing I still have not been able to get comfortable is using my disabled hanger for my car.  I just won't use it,  much to the chagrin of my kids.  I don't know why.  I guess I associate it with the elderly and wheelchairs, of which the  former I am not, and the latter I don't plan on using any time soon

 Although..... if I do end up needing to use a wheelchair, I want one like +Lady Gaga is currently using.

http://www.rollingstone.com/music/news/lady-gagas-gold-wheelchair-all-the-details-20130313


Yeah I think I can rock that ..

Thursday, March 14, 2013

MS kills connections if we let it....



Many of you may or may not know this is the official MS Awareness Week, and I felt the need to really try my best to spread the word. I posted this status on a few of my favorite running pages on facebook March 11, 2013:


"Today I ran 3.5 miles. I ran for all the times I was stuck in bed with IV poison coursing through my veins. I ran for all the injections I have to give myself and the side effects I have to endure from them. I ran for all the tears and the times I couldn't and won't be able to get out of my bed and just walk. I ran for my daughters so they can see this disease won't win. I ran for all the others whose stride was stolen by this monster.
Today starts National Multiple Sclerosis Awareness week. Even if you don't personally know someone with MS maybe you could in your heart, dedicate one of your runs this week to those of us who can't."


To my great appreciation and surprise I was overwhelmed with the support I received for the post. My very favorite page https://www.facebook.com/womensrunningcommunity?ref=ts&fref=ts Women's Running Community, actually created an event to ask people to keep those who are not able to run in their thoughts during their runs this week. There was an overwhelming response from those who have been personally touched by this disease either themselves or by someone close to them. I read through each and every comment, and was touched beyond belief. I was thrilled that this opened up the topic for people who may not always feel comfortable sharing their experiences. That is my whole intention for writing this blog and speaking so openly about MS. It is sometimes called the silent disease, but I believe it's time for all of us to make some noise.
 

If you are newly diagnosed it's overwhelming, scary, confusing and makes you damned angry. I get it. Don't keep it in though, talk to someone and let it out.
If you are an MS veteran, it's still overwhelming, scary, and confusing and at times makes you damned angry. I get it. The beauty of being more "experienced" is that you have the ability to reach out to others and help them navigate this mess, and in the process help yourself.

The catchphrase "MS kills connections" doesn't have to be true if we all try to reach at least one person, connect with them and help make this journey bearable. I hope that somewhere someone is reading my rambling posts and saying to themselves "wow, I'm not alone" and they get a little comfort from my words.

Monday, March 11, 2013

today I ran...

Today I ran 3.5 miles. I ran for all the times I was stuck in bed with IV poison coursing through my veins. I ran for all the injections I have to give myself and the side effects I have to endure from them. I ran for all the tears and the times I couldn't and won't be able to get out of my bed and just walk. I ran for my daughters so they can see this disease won't win. I ran for all the others whose stride was stolen by this monster.
 Today starts National Multiple Sclerosis Awareness week. Even if you don't personally know someone with MS maybe you could in your heart, dedicate one of your runs this week to those of us who can't.