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Thursday, October 31, 2013

Bragging on my Man

I just want to brag up my man for a minute here.  Keith, my man, really can be pretty damn awesome and supportive when he puts his mind to it. We are running a half marathon on Nov. 9 and my last long run -11mi- is Friday. I have been really stressing because my last two long runs haven't been very good. I have had to run them by myself.  I like when he's running ahead of me, it keeps me motivated and I look forward to the little high-five we do as he's coming back. Anyhow, I have a really great friend that I have know since 7th grade - we are now 42 so it's been a long friendship- he has moved around a lot over the years, but we have always tried to keep in touch. He's a runner too, so we have discussing my nervousness over this half for a couple weeks. I have M.S. and have been nervous about bringing on a relapse, I am afraid I'll get to 11 miles and not be able to finish, just really silly things they both talk me down from.

Well, this morning my husband told me he had surprise for me....MY friend is going to be in town tomorrow and plans on doing my final long run with me! They set it up a couple days ago and the only reason he had to tell me today was my Mother in law went in for emergency gall bladder surgery this morning. So cool I love these two so much!     My husband has been my soul mate since we met when I was 16.  My friend has been a constant source of support since I was 13, except the one time when he introduced me to  my first boyfriend and he turned out to be a total tool, hahaha, but other than that one of my biggest fans for sure.
Feeling very fortunate today. 

life on my own terms

Happy Halloween friends!  I know my post yesterday was a lot off the subject of Multiple Sclerosis, but I needed to get it out and this is the best forum for me.  In my defense though I don't think it's so completely off as you may first think.  Much of what I wrote about was centered around guilt that I carry on a day to day basis.  I think that my friend's death hit me so hard in many different ways.  Sadness of course because she was a great person and leaves behind a family that adored her.  The other thing was that she did live her life to the fullest.  She was raised by her father and older brother so she had to find her way in love, life, and survival on her own without a female influence to help guide her.  She did things on her own terms.  Were they always what society would deem as "right", no.  They were right for her though.

I think all of us, no matter whether we have a chronic illness such as M.S. or other life situations we are not happy about need to learn how to live on our own terms.  I have often expressed my guilt of not working. I am nervous about even looking for something part time because I don't want to lose my benefits and then lose my job, like has happened so many times in the past, because of  my illness.

I recently was on the recieving end of some SSDI hate.  A person made a comment to the effect that she's tired of paying for someone else on disability to buy new cars and take vacations when they don't need it.  I felt froggy and decided to leap into the conversation to educate this person that not everyone on SSDI is using her money, many of us have worked fulltime and  paid into the system for enough years to earn enough credits to cover our own costs. Sure there are people out there who abuse the system, but there are a lot more who need and deserve these benefits.  I went on to say I am tired of having to defend myself to others uniformed opinions.   I was told that if I really wasn't taking advantage of the system then I wouldn't have to be so defensive.  I ended the conversation at that point.  I was not going to change this person's opinion because they didn't want to learn.


My question here is, why are we not allowed to have lives and live to the fullest if we are ill and not necessarily dying?  Why people that do not have a medical degree think it's alright to judge a person's worthiness for assistance?   I have many of the invisible symptoms every day.  My right side and genitals (sorry TMI) are numb. I am tired much of the day. I have cognitive issues that get worse every year.  I don't advertise these things though.  I shouldn't have to walk around with a checklist of my symptoms to prove to some one that I'm sick enough for them.  Yes, I run.  I run as much as I can.  I'm even training for a half marathon in November.  My neurologist is on board as long as I take precautions against overheating and dehydration, which I am doing.  When someone says "well you must be doing really good if you can run that much"  I just smile and say "yes I am".  I am not going to tell them that I have to nap for hours after each run.  That my house is a disaster because I am too tired to do anything. Hell, my poor dogs are not even being walked as much because I'm too tired, and they are too old to run with me.  They throw off my pace, yo! (runners reading this feel me on that one)

I'm just doing my best to live life on my own terms right now. I want to live to it's fullest and have experiences that motivate me to keep going.  It's hard.  I have a lot guilt that I am slowly letting go of, but it's still there. 










Wednesday, October 30, 2013

Feeling Minnesota...

Well here I am again, I'm going to try and not be so whiny and self pitying today, but I am still feeling pretty nostalgic and sometimes I just drown in the memories.  Anyone else feel me on this?

Music tends to bring this on for me.  I have loved music since I was a little girl.  My mom had this stereo cabinet in our dining room.  I would just lay on the floor for hours listening to the radio or albums.  I would stare at the Fleetwood Mac album cover for Rumors.  It just fascinated me for some reason.  Queen A night at the Opera, was also a much played album in my house.  Rickie Lee Jones was my all time favorite.  So much so I purchased a cassette of the album in my early 20's wore that out and ordered a CD about 5 yrs ago of the same album.   She just looked so cool on that cover with her hat not looking at the camera lighting her smoke.  Her songs and music always transported me and I could actually see in my mind the characters she sang about.  There were so many others, in the 80's I was all about metal and rock.  Motley Crue's Shout at The Devil album blew my mind at 13 yrs old and I never looked back.

So you can see I have a pretty strong connection with music.  Well today, I was cleaning the house IHeart Radio blasting through my speakers mostly 90's stuff.  The Freshman by the Verve Pipe came on.  I haven't heard that song in such a long time, but it always made me feel like I was in my twenties again. It's the perfect "hey I'm young so it's not my fault song".  That's not why it speaks to me so much though.  I am always reminded of all the mistakes I made back then when I hear it.  I was not the best friend, girlfriend or wife back then.  I always thought "hell, I'm just trying to live my life on my own terms here, and if you don't like it screw you"  So anyhow that song got to me a bit then a few Red Hot Chili Peppers songs came on and I dare anyone not be be touched by the way Anthony Kiedis just spews his soul right into your heart while he sings.  OK I can handle that though, a little weepy but not too bad.  THEN Green Day's Time of Your Life comes on and I just fell right to the floor in the dining room and sobbed.  Big fat ugly crying sobbing.  Not pretty crying here. Just snotty nosed, red eyes, wipe my face with my Tshirt sobbing.  Why?  I recently lost an old friend that died just way too young.  She was 41.  We met in junior high because she was trying to cheat off my paper, "hey can you move your arm so I can see?"  "What?!"  Oh yeah I new this ballsy chick and I were going to be friends. We had some mutual friends and starting hanging out nonstop.  We were  "bad" girls, smoking, drinking, cutting school it was the time of my life!  We would always listen to music and there was a radio station that we could call and dedicate songs to people with a little message.  We did that all the time.  She was a lot more crazy than I was when it came to boys and very sexually active even at 13 yrs old.  Well she ended up pregnant by 14.  God bless my mom for letting me still hang out with her.  It was the best form of contraception ever for me! She eventually dropped out of school and we lost touch because I was trying to get my shit together and finish.  When I met my future husband we pretty much stopped talking all together.  We were 16 and she already had 2 kids.

We met up again by chance at the Grocery store several years later I was pregnant with my second daughter at the time, but it was like no time ever went by.  We started talking again, going to each others` kids birthday parties,  just hanging out.  Then her marriage broke up and so did our friendship again.  We mostly just got busy and it was hard to find the time for it.  She had four kids and my two were still little.  We did stay in touch via Facebook though, and so it was  huge surprise when I found out she passed away.  I cried a little bit.  Was sad, but pushed it down and went on with my life.  This was two weeks ago.  Today I heard that song and cried for Tracy, for me, for our childhood, for her father, for her kids, for her SIX grandkids, for her brother , for everyone.



  I wish I could write a song for her, but I'll just dedicate Time of Your Life  to her instead.  With the message " It was short, but I know you had the time of your life"

Thursday, October 24, 2013

old, boring and blah

It's been a long time since my last post, I've been busy.  With what? Just life in general I guess.  Today I just really felt the need to spew a few things and get hopefully gain some perspective so bear with me here it's going to be long.

First off I want to be sure to put what I'm thankful for out here  because sometimes it's too easy to forget all the good things.  My health has been steady lately for which I am truly happy about.  I am actually training for a half marathon with my Husband.  We will be running it November 9, and I am really excited.  I just wanted to see if I can do it.  I have no big time goals, I don't have any illusions of placing anywhere near the top finishers, but I just need to prove this for me.

My girls are both healthy and happy, well as happy as any 16 and 14 year old girl can be, and for this I am truly thankful.  My hubby and I are getting on well and seem to have settled into a comfortable place.  All good things right?  Then why do I feel so weepy and sad?

I feel old, boring, and all around blah. My girls are growing up and don't enjoy doing the stuff we used love to do together.  Halloween was my biggest and best holiday always.  I mean I went to town on decorations, costumes, parties the whole shebang.  I had my own pumpkin patch just for this holiday.  Now, nothing.  No one wants to get pumpkins or carve let alone carve them.  My 14 year old still wants to dress up, but her sister doesn't want to trick or treat with her.

Another thing we used to do is go to the Renaissance Fair.  We have gone every year since my oldest was about 8 years old.  There were a few years we even dressed up.  This year I was told it's boring so we didn't go.

My husband is all about doing things as a family so when the girls balk he just says forget it with out even thinking we could have a good time just the two of us.  I guess what is really bothering me is I don't know what I am going to do when the girls are gone.  I think about it a lot lately. I also find myself a little, well, jealous  *gasp*of my girls.  .Oh settle down.  I mean because they have a whole future of firsts still to come.  First loves, first jobs, first time living on their own.  Yes I realize it's silly because they have a whole of struggling and broken hearts ahead of them too. Just the same though, those struggling times hold the best memories for me though.

I hope they find their purpose and path in life, because I think that is what I am struggling with the most these days.  Did I live up to all my potential?  Did I waste my years? Did give up on myself to easily?  I don't know sometimes it feels like "yes".  Realistically I know I have a great life and wouldn't trade my daughters or husband for anything, but sometimes I feel like I should have been more.  More what I can't tell you, just more.