Marriage

In church yesterday, it was announced that the Rockford Catholic Diocese has dedicated 2011 as Marriage-Building year.  Normally an announcement like that would go on deaf ears for me.  But the timeliness of it, after only finding out a few days before that a friend’s marriage was ending, I listened.  A statement in particular caught my attention.  The statement of how much God loves me that he gave me the love I have in marriage.  No truer of a statement could that be.  Too often you hear of marriages failing.  They hit bumps in the road and just call it quits.  Or they never do get married, because they think they don’t need to.  An easy out.  Marriage is an important sacrament in the Catholic church, but it is important in the secular world too.  The bond and commitment one has with another and to solidify it with marriage is a wonderful thing to do.  My married life has not been all wine and roses, but I can’t imagine my life without Kevin.  We argue and fight over the same things most couples do. But unlike most couples we are dealing with Kevin’s RSD.  That in itself is a huge hurdle.  The Kevin I first met, is not the Kevin today.  He has evolved.  Evolved into one amazingly person.  I can sit and cry about lost times/things.  Or I can look at the gift God gave me.  How blessed I am that I crossed paths that night I met Kevin.  That night changed my life forever.  Kevin might not be able to do the physical things he could do back then, but he does far more for me now then he did then.  I am a better person now because of his struggle with RSD.  He has made me a better person, a better friend, a better mother and a better wife.  I am still a work in progress, but I am on the right track because of my marriage to Kevin.

Regardless of the outcomes of Kevin’s interview with the Chicago Tribune today, or the disability claims he has been fighting for, it is Kevin that I care about.  I want him to succeed, but even if he falls, I will be there to pick him back up.  I want him to be pain free or at least have his pain managed, but if it doesn’t happen, I won’t leave.  God gave me to Kevin and Kevin to me because he loved us so much.  How could I walk away from that?

What a differene a day makes

Yesterday I was all down in the dumps feeling sorry for myself and today I realize despite everything I got going on I am so lucky to have what I have.  I have a beautitful son and a wonderful husband and God.  As long as I have them, there isn't anything I can't do.

Drained

I haven’t posted in a while, because I am exhausted, empty and drained.

So much going on this month.  New added responsibilities at work.  Kevin’s mom unavailable to watch Lincoln while I am at work for two weeks.  Scrambling to get people to help Kevin with that.  Kevin’s dad coming for a few days.  Kevin’s daughter coming for a visit.  Kevin being interviewed by the Chicago Tribune.  Christmas looming.  So much going on.

Today I came to reality that in 30 days we will be saying goodbye to our home.  So I had an anxiety attack about packing, storing, moving etc.  Kevin calmed me down.  But now I am just down. 

Thank you Kevin

There is more to Kevin than RSD.  RSD didn’t make him the person he is today, it has definitely made an impact, but it isn’t what he is all about.  I hate that his RSD overshadows everything else.  He was special before the RSD; the RSD just enhances how amazing he is and can be.  I don’t have any special talents that I know of.  I am not musically inclined.  I can’t write for shit.  My career path is not an exciting one, Staff Accountant at a non-profit.  Oh boy exciting stuff. :) But with Kevin, music and writing just seemed to come easily for him.  He would hear a song and be able to play it within 15 minutes.  He has read so many works; he can quote from all genres.  I can quote Seinfeld episodes and that is about it.  It is sickening how quickly he can master something, like the beautiful chainmail he made for our wedding.  All the things he does, I would be spending every waking hour praising him for it.  It can get tiring to do that. LOL. 

He continues to do all the things he did before the RSD, except for the chainmail, and it is even more amazing because he does it through his pain and suffering.  His music and writing have more depth because of his RSD.  Because he is so talented and does so many things well, it is like olfactory fatigue setting in for me and I forget to praise or acknowledge all that he does.  It doesn’t mean that I don’t realize it and appreciate it.  I just forget or am consumed in something else, work, Lincoln, life in general.  We all need to be reminded to do things now and then.  And I might need to be reminded more than others with everything going on in my life.

I grew up not getting that constant praise, so it is hard for me to dole it out.  It doesn’t come naturally for me.  I did grow up with a lot of love and attention.  So I show my appreciation for things less with words, but more with actions.  Words can get me in trouble.  People misinterpret them at times.  I can have the best intentions and get slammed for saying something.  Facebook has been a killer for me.  So many times I post something so innocent and get blasted for it.  Now I have become a facebook lurker.  I read everyone’s posts and look at pics, but hesitant to say much for fear of repercussions.

I am writing this blog today, because I was reminded that I wasn’t really paying attention to all the things Kevin was doing and has done.  All the little things that are making a difference in his life and so many others.  In this time of Thanksgiving, I am reminded to thank my husband for all he has done for me and our family.  To thank him for continuing the fight even though there are days he is in so much pain he just can’t take it anymore.  I want him to know I do realize and appreciate all he is and does.

Thank you Kevin.  I love you so very much.

Suffering and Love

There was something said in church Sunday that really struck me to the core.  That it was never said that we would be without pain and suffering, only that we would never be without love.  God loved us so much that he sent Jesus to suffer along with us.  Pure unending love.

So I thought about that in regards to my own life and found comfort in that line of reasoning.  We all suffer and have pain, some people more than others.  But we are never without love, whether it be our spouses, our friends, our families, or God.  Through that love, we can push on.

This weekend, I saw that true love that Jesus showed us in Kevin.  He suffered for the sake of giving me some alone time, by walking over to the neighbors with Lincoln and hung out with them.  I am not saying spending time with the neighbors is suffering in anyway.  They are amazing, wonderful people, but that he gave up the comfort of his home (well as comfortable as it can be considering his condition) to give me time alone at home.  Then Saturday night he went with his brother and his brother’s girlfriend to a bar to watch UFC.  Again, spending time with his brother and his brother’s girlfriend is not suffering, but sitting on a hard wood stool for 3 hrs is, especially when you have RSD.  Kevin really paid the price for all of that on Sunday.  He was miserable.  Kills me to see him like that and not be able to do anything.

Anyway, the sermon at church was very timely for me about suffering and love, because I needed a smack in the face.  Saturday night, the ugly green monster came out of me.  I was home with Lincoln while Kevin was out watching UFC.  I love UFC, it was always something Kevin and I watched together.  And I am sitting there feeling sorry for myself and jealous that I didn’t get to go too.  Then getting upset knowing that Kevin would wear himself out and be in so much pain the next day.  Wishing Kevin could do more things with me.  Being selfish, wanting Kevin to myself.  Not wanting him to wear himself out with everyone else.  Then I got upset with myself for thinking that way at all.  Just a vicious circle.

So hearing those words in church made me realize some things in myself and in my life.  I am not lacking in love and no matter what happens in my life, love is always there.  What a comforting thought.  Makes me smile.

The New Poor

I just love applying for financial assistance.  Always a pleasant experience to see in black and white how bad off you are.  Not!!!  I spent the morning filling out forms once again trying to prove our financial need for assistance. This time for a grant through the American Legion that Kevin’s contact at the VFW told us about.  It is so frustrating to fill this stuff out, knowing you probably won’t qualify.  They take your GROSS income not your NET.  So apparently the taxes and medical insurance premiums that come out of my check somehow are available to me to buy groceries and pay bills every month.  How do you figure that?  And when recording expenses, you can only include monthly recurring ones. So this does not include our $6000 family medical insurance deductible that basically makes us have to pay out of pocket 100% for all doctor’s visits, and because we don’t go to the doctor monthly, not considered “recurring”.  You are only supposed to include food as a monthly expense, not toiletries, personal care items or diapers or laundry and cleaning supplies.  The only utilities they count are gas, water and electric.  No phone, internet and God forbid cable.  Car payments are also not considered into the figuring for most assistance programs like WIC or Food Stamps.

So we are the new poor.  Make too much to qualify for assistance and don’t make enough to live on our own.  Hence come January 1^st we have to give up our apartment and move in with Kevin’s mom.  I am grateful we have a place to go, but frustrated and sad that it has to come to that.

Flashback

Here we are again, coming on to the holidays and I am flashing back to the depression of last year when Kevin was mentally breaking down from the pain, not knowing what was going on fully or what was going to happen to him or us.  Holidays are stressful as it is, add an illness into the mix that baffles everyone including doctors and you are in for a hum dinger of a stressful ride into depression.

Kevin had a very intense pain day yesterday.  So much so that it affected his cognitive functioning.  He had no memory of the last days or weeks.  Was disconnected, agitated, scared and depressed.  I hadn’t seen that scared look in his eyes since last year at this time when we were dealing with the North Chicago VA and feeling helpless.  So I flashed back and started tearing up.  For my own sanity, I blocked those events of last year from my mind.  Seeing him in the state he was in yesterday brought it all back to the surface.  Of course I don’t remember any of the good times of last year’s holidays.  That is all a complete blank.  I do remember however, Kevin’s pain, tears, fears and depression.  We didn’t know what to do, where to turn, who was going to help, or if anything was going to help.

When Kevin got his nerve stimulator implant in March things were looking up.  Finally we had a solution.  But it was short lived, two months later, he was right back to where he was before.  The doctors basically said there is nothing more they can do and just prescribe more narcotics for the pain.  Now they want him to try Lyrica.  We have all seen the commercials on TV for it and all the side effects.  I have read on line too, how it makes it difficult to walk and concentrate.  A feeling of being stoned.  It is like they are drugging him so much that he will be so out of it he won’t realize he is in pain.

I don’t want a drugged out Kevin,.  I know he doesn’t want that either.  He would lose his ability to play music, write, read, game, and just simply interact normally with people.  But what is the alternative, having so much pain, that it affects your cognitive functioning?  So again, we have come full circle of where we were at last year at this time.  Kevin is so much pain and we don’t know what to do, where to turn and who or what is going to help.