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.

Support Group

I have never been much of a support group type person, then again my only experience with them have been weight loss groups.  I just assumed support groups were just a group of people bitching and complaining about what they no longer have and what a struggle it is for them. 

When Kevin's RSD hit in September 2009, I was doing all kinds of research I could to find out about the disease.  Then the holidays were coming and the stress and depression for both of us settled in.  I sought out support and found a support group based out of Alexian Brothers Hospital in Elk Grove Village.  I was very familiar with the hospital as my sister works there.  So because I was familiar, I was comfortable in going there for a support group.  I had been chatting via email with the groups founder, Edwina Schaeffer and without ever knowing what she looked like, as soon as I walked in the meeting, I know who was Edwina.  She has this pure sweetness about her.  Kind, giving.  She suffers from RSD as well.  Her husband, Bob was there too and everyone attending introduced themselves to me.  They were thrilled that a family member of an RSD sufferer came out to learn more.  They are all amazing people and because of them I came home with hope.  RSD wasn't the end of road, just a turn in our journey of life. 

It is amazing how a group that is meant to support the people with RSD, provided me support as one who is living with, loving and caring for someone with RSD.  When you as so close to the person suffering, it is hard to see outside of your little world.  Through the support group I see the other faces of RSD.  I hear how they live with it, how they manage it and how their families deal with it all.  Unfortunately for some, their RSD proved to be the breaking point in their relationships.  Some divorced, some just deal with no support from spouses, children, friends or family.  One person said 10 years ago he was on the verge of suicide and found this support group and it saved his life.  He realized he wasn't alone anymore.  He never misses a meeting.  I met a woman yesterday that commended me for supporting Kevin, because her husband and own children don't support her.  Her niece was there as her support.  Some people just can't grasp or deal with a loved one suffering.  And they push that loved one away.  Close themselves off to them.  Maybe to protect themselves.  But by doing that, they miss out on the blessings it can provide.  They miss out on how it challenges you.  How it can bring you closer.

So for all you nay sayers out there about support groups, give them a shot.  You never know what you will get out of it until you check it out for yourself.

Self Pity

Reading through my blogs I noticed a trend, me feeling sorry for myself.  My husband reminded me of a poem once called “Self Pity” by DH Lawrence.  “I never saw a wild thing sorry for itself.  A small bird will drop frozen dead from a bough without ever having felt sorry for itself.”

I complained about being “caught in the middle”, but I was the one putting myself there.  I was trying to “keep the peace” in a war that didn’t exist.  My lack of understanding of other people’s relationships, caused me to try and “fix things”.  I realized, I am part of the problem.  I need to listen more and talk less.  I need to accept things and not change them.

Me crying, worrying, stressing, complaining about all that is going on in my life, isn’t doing any good.  It is making the situation worse.

Some days, weeks, even months, it seems I dwell on all the negative and not any of the positive.  Negativity is a virus.  It just spreads.  But positivity can spread too.  Why would I choose the negative over the positive?  It doesn’t make me feel better.  Makes me feel worse.  Why would I want to feel worse?  What will come of it?  What am I expecting to happen by being negative? 

I say that I am pulling away from people and feel alone because I don’t want to be the downer.  That if I tell them what is going on in my life that it would make them pity me, so I don’t I don’t say anything at all.  And that because I don’t say anything I don’t get any empathy.  What the hell.  I need to get over myself.  I chose to dwell on the negative.  If I would think of only the positive in my life, I would have all kinds of things to tell people.  And I do have a lot of positive in my life.  I wouldn’t feel alone.  I say that some people pull away from me because they can’t handle what is going on in my life.  They can’t “deal with it”.   I don’t want to “deal with it” sometimes, why would I think anyone else would.  Why would I even bring up all the bad?  Well to get a full picture of my life, I kind of have to.  Vows read at weddings can be used in all my relationships…in good times and in bad, in sickness and in health, for richer or poorer.  I was discrediting my friends and family, deciding for them what they can and cannot handle in my life.  Picking and choosing what to tell them, to save them the grief.  That wasn’t fair to them or me.

Empathy

Empathy is an interesting word.  “Put yourself in someone else’s shoes”.  I try to do that all the time.  I wonder if anyone is ever empathetic to me.  Put themselves in my shoes.  I don’t have a disease.  I am healthy as far as I know.  I don’t have pain other than an occasional migraine or the tendonitis in my shoulder acting up.  So because they see me as perfectly fine, I don’t need empathy?  I am not talking pity.  No one wants to be pitied.  I am talking about an understanding of what I might be going through.  To stop and think that maybe there is more going on than meets the eye.  So if someone doesn’t complain and moan about their lives, no one will ever show them empathy?  If they aren’t sick, they don’t need empathy?  Do I even deserve empathy because I don’t suffer?  I try to be a strong person.  I don’t like to complain.  I don’t like people knowing all my business.  So because of that, when I am overwhelmed and overloaded, I feel all alone.  I sit at work crying in my office and no one really knows what is going on.  It is work, trying to be professional.  I don’t want to bother my friends with all my shit, because I don’t want to be a downer or a burden,  Not mention I don’t want to dwell on the bad and negative either.  I don’t let my husband know all that races through my mind either, because how can what I am going through compare to what he is with his RSD.

So today when I am dealing with my mom being put into a nursing home, I am getting hit with phone calls from Kevin and his mom, both telling me that each other should show compassion for what they are going through.  And I sit here thinking what about me.  So I listen and try to understand and try to be the mediator and all it does is upset them more.  “Caught in the middle” so to speak.  I am left to just worry.  Worry about my son who is also caught in the middle of it all.  And stuck at work helpless.

Well I did get empathy, but not from whom I was expecting, but from someone who just happened to have the misfortune to email me when all this shit was going on. LOL This person is no stranger to RSD.  She just so happens to be the founder of the RSD Support group in Illinois.  Having RSD, she knows first hand what family members deal with, struggle with and stress about.  She listened, showed empathy and told me how proud she was of me for how well I am handling all I am dealing with right now.  So thank you Edwina. 

God only gives us what we can handle.....

As they say, God only gives us what we can handle.  Does God think I am superhuman?

It isn’t enough that my husband is disabled from chronic pain.  It isn’t enough that we are losing our home because Social Security and the VA denied Kevin his disability benefits.  It isn’t enough that I have to deal with the usual work bullshit.  Now my mom is in the hospital too.  And they don’t know what is wrong with her.  I know my mom can’t be around forever, but it doesn’t make it any easier to deal with that fact.

I feel helpless and out of control.  I guess that is God’s point to prove.  That I am not in control of my life, he is.

Some days it is easier to handle all the shit that is thrown my way and some days it isn’t.  Today is one of those days it isn’t.