update to yesterday's post

I am going to have to clairify a few things from yesterday I think.  Maybe clarify is not the correct word in reality maybe accept would be a better word.  After quite a heated "debate" with the well meaning husband who doesn't really have blinders on like I thought, he pointed out all those thing I just wrote about are my issues.  No one else's.  All mine.  100 %.  Making myself bonkers is my special skill and and the sooner I accept this the better off I will be.

Needless to say I was not very pleased with this attack, as I saw it, on my character.  As it always does, it took me some time to really think over his words and realize he was not attacking me just telling me some truths that I didn't want to hear, but needed to hear anyhow.  The gist was all the pressure I feel is completely self imposed. 

He's right. Now what?

"You look better" compliment or pressure I don't need?

Today I'll be receiving day two of IV Steroids.  It's kind of funny how after one day people are telling me "oh you look better" or "you're already walkng better".  I know they really mean well, but sometimes I just wish they wouldn't say anything.  The issues they can't see are much harder on me than the mobility part sometimes.

 I realize we are a visual species.  If you can see it you can believe it.  When it comes to a disease such as MS, friends, family and even caregivers familiar with the disease seem to need that visual proof I'm getting "better".  It's tiring. The slurred, garbled speech is not enough for some people to believe I am really having issues.  When my hands are shaking while doing simple tasks it's still not enough to for many.  "You're just tired, why don't you take a nap" is often heard in my house from my well meaning, blinders wearing husband. But as soon as the cane comes out well then it's real.

I love my friends and family, but sometimes the comments about "looking" better make me feel worse.  It puts an added pressure on me to get moving and back to normal again that sometimes I just can't do as quickly as they or even me would like.  I want to drive my Dancing Queen to her lessons instead of having my husband who just worked a 10 hr day have to do it.  Swimmer Girl is getting on to her practices just fine, but I just don't like having to ask others do what I am here to do.  Ya feel me? I want to go to the grocery store and have food and toilet paper- oh don't even get me started on the toilet paper issue!- in the house.  I sometimes can't bounce back as quickly as I used to anymore and I don't know how to tell people this without sounding overly dramatic and "look at me I have MS dammit"

 How about the rest of you? Does the comment during a treatment "you look better" make you feel better or does it make have a little guilt for not really feeling better?

pissin` in my flowerbeds

Helplessness, guilt, sorrow, rage, despair.  Those are just some of the feelings an exacerbation bring out in me.  Whether they are a result of some wonky brain wiring or dormant feelings I have squashed down that have come to the surface due to lack of control, I don't know, but they are real and hurt.  Right now I am experiencing very noticable symptoms.  I can't really walk proper, I have slurred jumbled speech, but the stuff going on inside my head is far more hurtful than any outward displays of this monster.

I want to shut it off.  I really do, but once the thoughts creep in, it's like trying to get a stray cat that you fed once to push off.  I love cats, but I don't need 'em pissin` all over my flowerbeds and these feelings are definitely pissin` all over my flowerbed.

I try hard to cultivate positivenss in my world these days.  I want to look at the beauty in my days and see the magic in everyday life.  I'm usually pretty good at it, but sometimes the shit creeps in.  When it does I just till it under and let it feed the pretty.  When those piss thoughts slip in things it gets harder because they just lay a veil of malodor over everything that lingers.

When a cat pisses in my flowerbeds sometimes it takes a few good hard rains to clear the odor.  Maybe that's what tears are for.

i despise thieves

Ok friends I have decide if I'm going to make the call.  I hate the call.  The one to the neuro's office.  It always leads to iv steroid treatments and all the b.s. that goes along with them.

This is the part of dealing with m.s. that totally pisses me off.  Not only do I have to give up my life to sit in the infusion center for three days, I have to ask someone to drive me and sit with me.  My hubby has a busy week at work.  My parents shouldn't have to take care of me. Hell I should be taking care of them at this stage of our lives. Then there is the withdrawal week of Hell.  

 Dance classes, swim practice, grocery shopping, dance comp ( up in freakin Detroit), costume alterations, cooking,cleaning, life.........

M.s. steals my time

M.S. steals my words

M.S. steals my strength

M.S. steals my enthusiasm

I despise thieves.  This one is not going to get away with it.

exacerbation station

Well good morning M.S.! Where are going today? You want me to not use my legs today? You want me to drag my cane through the snow and ice?  You also want me to sit around the house staring at all the things that need to be done yet I can't do?  Looks like we're headed to exacerbation station! How can I refuse?

No, really how can I freakin' refuse?  Honestly I have been doing pretty OK physically lately so I guess the huge weather changes and the little germ Petri-dishes at the dance studio had to catch up with me eventually.

I try not to make a big deal of it anymore at home.  My husband is pretty good, but I can always see the walls start to go up when I say "I'm not feeling well"  He tries, but he feels like if he acknowledges my struggles he is "babying me".  He does not want me to "use M.S. as an excuse to not do things". He is still a very much mind over matter kinda guy and it really drives me nuts. If I could just think my way out of this doesn't he think I would?  Meh it's an old fight and I simply don't have the energy for it.

He invited people over for a game night tonight.  Now I wouldn't mind except the the house is a stye.  The bathrooms are gross, kitchen floor needs mopped, and the normal daily dusting, sweeping .....
Oh and did I mention I am exhuasted?  I really don't want to get all dressed and crap.  Today should just a be me and my kindle and my most awful pair of sweats day, but "we are not going to change our plans just because you're not feeling great".  He's not really as cold as he sounds just very rigid.  Must be all that military training.  Why he married a loosey goosey gimpy hippie like me I'll never know.

I remember one really bad day during an exaserbation a few years ago.  I wanted to get out of the house and we were planning on gutting our bathroom.  He suggested we go to Menards and just window shop a little.  When we got there he pulled up to the front entrance and told me to wait while he gets a wheelchair.  I was like " oh Hell no! I am not being  pushed around in that!"
"I am not going in there with you if you're going to try to walk around"
"I have a cane"
 "you just got out of the hospital and can barely STAND" 
"I'll push the cart"
"no"
" I AM NOT GOING TO BE IN A FUCKING WHEELCHAIR"
 "YOU'RE BEING STUPID"
 "FUCK YOU!"
 "FUCK YOU!" 
 this argument went on much longer and louder, but you get the gist, and so ended our outing to Menards. I like to think I have gotten a little more perspective since then.  Also our therapist made me realize he was only doing what he thought was right to help me.  I guess I can be just as stubborn as he is.  That is the Aquarius in me. 

If I am going to be completely honest I would probably spend a lot more time wallowing in my M.S.edness and feeling sorry for myself if he wasn't there to snap me out of it.

As far as tonight goes I'll greet our guests and try not to obsess on the fact that I didn't get my lampshades vacuumed.

find things you love

I'm looking back at my previous posts and realizing I may have gotten off track here.  My main intent for writing this blog- ugggghhhh I really can't stand that word, "have you read my blog?", "you should read my blog", "I'm kind of a big deal, I write a blog" sounds so pretentious- was to help people. I really don't know if I am helping or just scaring the bejeezus out of folks.  I just hope anyone who reads the things I have posted find some sort of inspiration in the fact that no matter how many times I have been knocked down, I still have been able to brush it off and keep moving on.  I never intended to make myself look like some sort of hero who just keeps going with a smile on my face. What you get is the raw me.  The me who is so sick of this fucking disease and what it has done to my body, my mind and my family.

When I post about running it's because I want anyone reading to know they can still do things, a wheelchair is not inevitable.  Maybe you can't run today, but you might next week.  I wasn't even a runner until 4 yrs ago.  My family and friends worry about it constantly and tell me I push too hard, but it's what I can do.  I can't work anymore, but can run.  I am not saying everyone should be running or even athletic, but I think we all need to be able to do things we love an make us feel good about ourselves.  Please don't let anyone make you feel "disabled".  Once you go down that road it only leads to depressionville.  Not a place you want to live, trust me.

Be well friends.  You can follow me on "the"Twitter  @jeanninecz.

Breathe

My trail in the park, my "home"

I haven't run in weeks.  It's been cold, like dangerous bitter and tons of snow.  I refuse to run inside on a treadmill.  I actually have anxiety about going to the YMCA and running on the dreadmill.  I don't like people too close to me because I feel like I run weird because my gait is off and I tend to slap. I'm also a heavy sweater.  I'm a slappin' sweatin' hot mess.  I just can't bring myself to walk up those stairs and get on a treadmill in front of others.

Well, I got my butt in gear and went for a run today.  It was only 13 degrees outside, but not bad once I got started.  I really didn't know how much I needed it until I pulled into the park and and my eyes started to prickle with tears.  I was taken slightly aback by it really.  It was like coming home after a long trip.  Running for me has really been a life saver.  It keeps me steady and calm.  I can forget so many things while I run.  I feel normal.  I feel strong.  I don't have to think about anything.  I don't have to worry about my words coming out as nonsense.  I don't have to think about how to pay my electric bill this month. I don't have to analyze every numb or tingly spot on my body.  I don't have to think about where my next injection should be tonight.  I just have to breathe. 

I really hope that those of you out there reading this have something you can do to just let everything drift away for at least an hour of your day.  Meditate.  Read a book. Write a book.  Paint or draw.  Just find something where all you have to do is breathe.  Trust me it's worth it.

My Funeral

My Uncle passed away this week and I heard many times in the last few days that although the funeral was very nice and went smoothly it was not what he would have wanted.  He only wanted one day for a showing, and they had a two day showing.  It was very stressful for his three daughters.  At one point my cousin said they will have a memorial fish fry and have a fun time "like dad wanted" in the summer. Plans always get a little skewed when more than a few people are involved and even though my cousins are all grown women my other uncle sort of took the lead and ended up  vetoing some of the funeral plans because the way he thought to hold it was "the way it's supposed to be done".  Well, I decided to make my own plans today and told my girls this is the way I want things done.

First off I want a four day showing plus one day for the funeral.  I want a whole five days of me.


I will approve all pictures for my picture boards beforehand and if anyone puts one on that is not flattering to me I will haunt them and their descendants for all eternity.

I will give everyone scripts for when its time to stand and say a nice memory of me.  Everyone is required to speak on my behalf, if they don't they will be escorted from the premises immediately.

I want flowers.  Lots and lots of flowers. Everywhere. I even want them with me in the casket.

I want to be buried with my little pillow.  Everyone knows I can't sleep without it.

Although I am not a very good Catholic I have always found the catholic funeral mass to be very comforting and I want mine to be held at Good Shepard church where all my family has always belonged.  I do however want the mass to be punctuated by loud and random proclamations of "AMEN" and "TESTIFY".  If someone would be willing to pass out from grief that would be great.  Ooooooooo and all the women have to wear hats.  I do love a good hat.  I think I want one too.

At the gravesite I want a slow clap as my casket it lowered. 

 I may hire a mysterious man to stand at the back of the crowd and take notes.  Afterward he'll ask random questions about me and write down the answers.  Because I always tell my kids, "you don't know anything about my life between the hours of 7:30 am and 2:30pm (that's when they are at school), this should sufficiently freak them out.

Now since I don't plan on passing anytime soon, I may tweak and change some of this.  On second thought, no, don't plan on it.

Side note, here my 16 yr old swimmer girl just read this and said "No".  She will now be haunted forever.

Keep your business to yourself

I'm going to write a fantasy story about a 43 year old divorcee with four kids, that all call her Mum, who moves to california wine country from Ohio.  She works part time at a dance studio and attends school full-time for an arts degree. She gets by, by bartering and trading and working part time at a dance studio.  When her  fifteen year old daughter, who aspires to be a professional ballerina is accepted to very prestigious  dance school's summer intensive program all she has to do is ask for donations and voila everything is covered.  For a love interest I think I will give her a French wine maker.  He will be funny, and down to earth.  Oh and in her free time she will be an avid cross fitter. 

Oh wait, those are all posts from one of my FB "friends"! Holy Hell people can we please get real?  I don't mean to rant, but seriously?  I never take anything I read on FB at face value.  I can't afford to. If I did I would be crying in a corner everyday because of my failed, boring  life.  If I believed everything everyone wrote about their children, and husbands, I would be convinced that mine are basically untalented simple minded cave people.

I realize we all want to put things out in the world that make us look good. I have been known to take over thirty selfies just get that perfect casual profile pic. I don't post when my darling daughter has written on Tumblr that she thinks her dad is an asshole.  I don't screen shot texts from one spawn that say I just don't understand how she feels, and that I think the older spawn is perfect. However, when I do congratulate my kids' teams for a job well done at meets or competitions, but I don't try to make it sound like they're getting scholarships coming out their perfect little behinds for everything they do, but if that's what you want to think.........

If something really great does happen for someone I love to congratulate them and am happy for them.  The birth of a baby, being accepted into their first choice college, those things are brag worthy go for it.

One thing that really does bother me is the amount of people who complain about their problems on FB.  All of their problems.  Every. Single. One.  Maybe it's just my age or they way I was raised, but my problems stay in my house. "Hypocrite much?" you ask as I sit here post my blog every week.  In my defense, I post this stuff for people who may be feeling the same way and for them to know it's ok and they're not alone.  That and if I don't, someday I will explode and all these thoughts will just come pouring out of my mouth and in a never ending spew of hurtful and vile commentary on everyone I know.  So really this blog is a public service.  But back to the complaining.  I never talk about my illness with others.  I don't bring it up often and if I do it's brief.  I am happy to answer any questions people have.   I just don't advertise my daily challenges.  I am finding that more and more of the thirty and under set do just that.  I would almost think that their brains were directly wired to FB and every thought that pops in their head is automatically uploaded.
 "my husband is such a jerk he said I don't do anything around the house"
 to which the husband replies from another room in the same house I presume "I just wondered when you going to do the dishes?"
  "see what I mean? he doesn't do anything around here"
 "because I work 60 hours a week!"
 "while I'm stuck here all by myself all day with these kids!"

I have actually seen a post like this that just went on and on. 

Can we all please just try and remember what our grandparents already knew, keep your business to yourself.  Now excuse me while I attend the Super Bowl tonight. (in my living room)