Paperwork

So much paperwork, at home and at work.  Forms for this, forms for that.  Online forms, paper forms.  All so confusing and so much to keep track of.  Now imagine how much more difficult keeping track of paperwork, or following up on paperwork can be when your husband has RSD, you work full time, have a 3 year old and you were evicted from you home 3 months ago and all your stuff is packed up and you have no clue where to start locating it.  If you are filing for disability or receiving disability, the paperwork intensifies.  The lack of following up or following through on this paperwork is costing me and my family money.  So you think it would be our top priority.  It is, but our life is different and as I tell my friends when they call me to get together, my life works on “last minute”.  I get more things done, see more people, last minute, than planning ahead.  Because my plans will always get jacked up because of our situation.  But with paperwork, you can’t work on last minute.  You need to get it done.  And it comes back to where do I begin looking for all the info I need to fill out this paperwork.  Then I get overwhelmed, stressed and my defense mechanism of avoidance comes into play.  I avoid unpleasant things, thinking I am saving myself grief.  But in the end, I cause myself more grief.  Vicious circle.

Then you have RSD.  With Kevin’s RSD, you don’t know when he will have a good day or a bad day.  So you can’t plan.  When he is able to do something, you have to drop what you are doing and do something with him or you will lose that opportunity and you don’t know when you will get the opportunity again.  Sometimes I don’t want to or feel like dropping what I am doing and it frustrates me when I have to and I take it out on Kevin and I don’t mean to.  So in regards to all this paperwork that needs to get taken care of and which I need Kevin’s help in doing, because the VA won’t deal with the spouse only the veteran themselves, I have to catch that opportunity.  But when Kevin feels good, I don’t want to waste that time doing something unpleasant I want to enjoy the time and have fun with him.  So paperwork doesn’t get done.  And money is delayed or lost.

I know don’t look at all of it at once, knock one thing out at a time.  Well then a phone call needs to be made on something and you have to wait for a response and something else comes up.  Or you can’t find or don’t have the info needed and you have to order it or call someone for it and wait again.  Because of our living situation we are completely disorganized and everything takes so much more time to get even one thing knocked off.  And we don’t have that luxury of time when it comes to getting money.

Kevin has enough to deal with daily without me nagging him about making these phone calls or filling out that form or calling for that information.  Like I said before, if he gets a few minutes of pain relief out of hell day, I don’t want to rob him of the enjoyment of those minutes to do paperwork.  It is almost like we need to hire someone or me not work to get all that needs to get done.  So I am left overwhelmed with all this paperwork.

Strong and Gentle

I have this Daily Spiritual Refreshment for Women Journal and the subject for today is Strong and Gentle.

Let your gentleness be evident to all.

The Lord is near.

Philippians 4:5

And the thought for today after the passage is as follows:

“The Bible says that the strong woman is also gentle—two words that might seem contradictory.  But they aren’t.  The strong woman chooses how she will respond to others.  She chooses to deal with them gently—because she can.  She is in control of her emotions, her words, and her actions.  Anger, hostility—both represent the easy way out.  But gentleness requires strength.  God wants to see you become a strong, gentle woman for Him.”

For Lent this year, I decided not to give up anything, but do something instead.  So many times I give up something and I just fall off the wagon.  Give up swearing or sweets or coffee, whatever.  Never fails, I will do, eat or drink whatever I gave up without even thinking about it.  So this year, I decided to pray every day.  I have to think about it.  And I have my prayer books at work on my desk to remind me to start my day off with prayer and a bible by my bedside to remind me to pray before going to bed. 

It is amazing how much benefit I have gotten from these daily prayers.  Last Sunday our priest mentioned in his homily that we need to do “preemptive prayer”.  Pray before we get into situations that would let the devil in (like bad thoughts, actions, anger etc).  I laughed about it afterward, that I would end up praying 24/7 if that was the case.  The joke was on me, because this preemptive prayer is helping me and I didn’t have to do it 24/7.  Just adding prayer into my daily life, brought a strength and calmness about me.  Sure, I can still be a ball of stress and tension, but I seemed to be handling things a lot better.  Thinking before acting.  People in my life are no longer an after thought, instead I think of how my words, and actions can affect them before saying or doing.

So by doing my Lenten promise, I am letting my “gentleness be evident to all”.  Or trying to at least.   I am trying not to take the easy way out with anger and hostility. 

In doing something for Lent, I ended up giving up something.  I gave up my worry, and stress.

Being a wife of and RSD sufferer and a mother of a 3 year old, I need to have a lot of strength and I need to be gentle too.  I need to reach in for that inner strength and to be reminded to do so through prayer has been helpful to me. I am finding my sprititual life has been imperative to my survival.

Prayer

I asked God for strength,

that I might achieve...

I was made weak,

that I might learn humbly to obey.

I asked for health,

that I might do greater things....

I was given infirmity,

that I might do better things.

I asked for riches,

that I might be happy....

I was given poverty,

that I might be wise.

I asked for power,

that I might have the praise of people...

I was given weakness,

that I might feel the need of God.

I asked for all things,

that I might enjoy life...

I was give life,

that I might enjoy all things.

I got nothing that I asked for,

but everything I hoped for.

Almost despite myself,

my unspoken prayers were answered.

I am, among all people, most richly blessed!!!

Anonymous

Birthdays - Are they just another day, marking just another year went by?

When birthdays roll around I think in years.  How old was I when I did that?  How many years ago did I hear that song?  How many years has it been since I have done that?

My birthday is coming up this Tuesday I am thinking once again in years.

For 38 years I didn’t have a care in the world but myself.  Then I met Kevin, got married, became a step mom (which including dealing with Kevin’s ex-wife), to becoming a mother to my own child Lincoln.  Then I became the wife of a disabled husband, to losing our home and living with Kevin’s mom all in six short years.  I don’t catch my breath from one thing happening before another thing does.  I am struggling with all the life changes.  I am not even accustom to one change and another one comes along.  Maybe it is a mid life crisis, I will be turning 44 on Tuesday, or just overwhelming stress lately, but I am really having a difficult time dealing.  So much so, that I think I need some professional help to get through it all.  My once a month glass of wine has gone to a bottle a week.  Just this past Wednesday, I was so agitated and felt like I was going to jump out of my skin, that I had thoughts of just bailing, running away.  I squashed those thoughts by looking at Lincoln playing with his Legos and Kevin writing in his journal which made realized how lucky I am to have them and there is no way I was going anywhere.

Sometimes you can handle all that is thrown at you and other times you can’t.  Maybe because work has been extremely stressful this week, that it has carried over into my home life.  Threats of state budget cuts to human services means turmoil at work, since I work for a human service company.

Then there is the stress of Kevin’s SSDI hearing on Thursday.  That worry that it will not go our way, even though our lawyer says it will.  If it doesn’t, it means just that much longer we have to live with Kevin’s mom.  I hate that thought.  I am miserable there.  I spend my evenings trying to keep Lincoln from bothering Kevin’s mom and her husband.  So I can never relax.  How can you keep a grandson from his grandmother, whom he can run to all day long?  Lincoln can’t switch it off when mom gets home.  Not to mention “sexy time” is non-existent.   Kevin blogged about his frustrations this week in The Rant Post: From the Shadows Link: http://therant-kmshear.blogspot.com/2011/02/from-shadows.html and I totally concur with it all so I am not going to rehash it here.

My birthday.  Just another day.  I don’t think so.  It is a very special day to me.  My special day.  I want some kind of fanfare over it.  No matter how small.  With Kevin and his RSD, you can’t plan anything.  You just don’t know how he will feel that day.  Though I WILL be going out on my birthday this year.  Kevin’s mom planned a bible study group at her house that night.  Yes I was welcomed to join, but not interested.  So I either hole up in the bedroom or I spend the evening out of the house.

Speaking of Kevin, today he had an appt with his primary care and he will be coming home with all new meds.  Hoping this cocktail will give him some relief no matter how short lived it may be.

Back to the question, how many years ago did I hear that song?  I heard Alanis Morissette’s song “Hand In My Pocket” this week and it conjured up all these memories, but it also made me listen to the lyrics differently, because I am in a different place today then I was when the song first came out.

“Hand In My Pocket"

I'm broke but I'm happy
I'm poor but I'm kind
I'm short but I'm healthy, yeah
I'm high but I'm grounded
I'm sane but I'm overwhelmed
I'm lost but I'm hopeful baby
What it all comes down to
Is that everything's gonna be fine fine fine
'cause I've got one hand in my pocket
And the other one is giving a high five
I feel drunk but I'm sober
I'm young and I'm underpaid
I'm tired but I'm working, yeah
I care but I'm restless
I'm here but I'm really gone
I'm wrong and I'm sorry baby

What it all comes down to
Is that everything's gonna be quite alright
'cause I've got one hand in my pocket
And the other one is flicking a cigarette
And what it all comes down to
Is that I haven't got it all figured out just yet
'cause I've got one hand in my pocket
And the other one is giving the peace sign
I'm free but I'm focused
I'm green but I'm wise
I'm hard but I'm friendly baby
I'm sad but I'm laughing
I'm brave but I'm chickenshit
I'm sick but I'm pretty baby

And what it all boils down to
Is that no one's really got it figured out just yet
'cause I've got one hand in my pocket
And the other one is playing the piano
And what it all comes down to my friends
Is that everything's just fine fine fine
'cause I've got one hand in my pocket
And the other one is hailing a taxi cab

Someone in need. Please read.

You have a kid. So, now what?: Another Letter...: "I wrote a more comprehensive letter. I was exhausted and worried when I wrote the first letter. I also have a plan. But, we need the help of..."

Guilt

Why does everything I do or get make me feel guilty?

This weekend I am going back to my hometown of Dubuque Iowa to spend time with family and friends and I feel guilty for leaving Kevin home alone.  I wish he could come too, but know the trip, which is a short 2-1/2 hrs away, would be a killer for him.  Then, I feel guilty that I am relieved he isn’t going, because I don’t have to worry about him or make sure he is comfortable at my mom’s (which is impossible on her furniture even for a healthy pain free person) or entertained there (my family can be boring, we are content just sitting in the same room not saying anything to each other).  I mention my guilt to friends and they tell me I am crazy to feel guilty, because I “deserve the break”.  Then I feel guilty that I CAN get a break and Kevin can’t because of his RSD.  Guilt, guilt, guilt. Ugh.

Then there is the issue of Kevin’s daughter and his visitation with her.  I feel guilty that I am unwilling to make the trek to Chicago every other weekend to get her since Kevin can’t.  People tell me “you shouldn’t have to”, “not your responsibility”.  But that doesn’t make me feel better.  I still feel guilty.  I feel bad that Lincoln doesn’t get to spend more time with “his Ashlynn” or Kevin spend more time with his daughter.  That I am responsible for that.  But I do have my hands full.  I work full time during the day, come home to a rambunctious 3 year old and a disabled husband with RSD and my next “job” of wife and mother kicks in.  My weekends are my time to spend with Lincoln and Kevin and do laundry and shop and clean and rest and relax, go to church with my sister and her kids.  I don’t want to spend the better part of my weekend training it back and forth to Chicago.  Not to mention having to deal with or have interaction with Kevin’s ex-wife or her husband in the process.  Kevin doesn’t want to deal with them, why would I.  But still feel guilty that Ashlynn can’t visit more often.

Even a birthday gift that Kevin’s mom bought me, made me feel guilty.  I felt bad that I even mentioned I wanted it when I saw it in the Sunday sales ad and when the on line purchase would cost more than buying it in the store, felt bad that Kevin’s mom had to go out in the cold, with a nasty cold/flu to get it for me.  I couldn’t even enjoy someone buying me something.  There is something seriously wrong with me.

There was a subject brought up on facebook about being “broke” but still having money to buy cigarettes and other luxuries.  I have been “broke” for so long, it struck a nerve with me.  Because I have bought cigarettes for Kevin and have bought books and toys for Lincoln.  It seems like when you are broke you are scrutinized for every little thing you buy or do.  That you don’t need it.  That you shouldn’t treat yourself or anyone.  Because I have been broke forever, I feel guilty every time I buy something.  Why should I feel guilt and someone with money not?  It is OK for them to buy things not needed, but not me.

Same goes for my guilt over Kevin and everything else I feel guilty about.  Why because I have had so much taken away, and have so little, why when I get something or do anything that would make any other normal person feel good, I feel guilty.  I want my child to understand Need VS Want, but I don’t want him to feel guilt all the time like I do.  I want him to enjoy life and everything that is given to him and every opportunity he gets.

Valentine's Day

Being Catholic I know there were Christian martyrs named Valentine.  One definition of martyr is a believer who is called to witness for their religious belief, and on account of the witness endures suffering and/or death.  Valentine is derived from Valens, which means worthy, strong and powerful.  This all describes my Kevin.  Worthy, Strong, Powerful and a martyr.  Kevin endures much suffering.  I believe, because of my faith, that God chose Kevin because he is worthy, strong, powerful and called to witness for his religious belief.  Because of Kevin’s RSD, I have become more spiritual and closer to God.  And I have seen Kevin become more too. 

I love Kevin very much and on Valentine’s Day we are supposed to express our love with cards, candy and flowers.  Those material things fade.  It is the day to day love that endures.  The expressions through actions mean more to me.  The hug, the kiss, the grasp of the hand, the smile, the wink.  I get those every day from Kevin even when he is in so much pain.  Kevin can’t go to the store and buy me things.  Sure he could order on line, but we don’t have the money.  I know it upsets him that he can’t do that anymore for me. Yes those gestures were well received by me in our early days of our relationship.  But our relationship has evolved.  It is easy to call in a flower delivery or pick up a card at the store.  The hard stuff is that day to day.  Kevin lets me know every day how much he loves me, with his smiles and winks, and hugs and kisses and that grasp of my hand in a store or in the car.  That is the real gift.  And he does this even through all his suffering. 

This blog entry to tell Kevin that I love him and that I recognize and appreciate all he does for me.  Those little things throughout the day, every day.  Not just on Valentine’s Day.  I thank God every day for bringing Kevin to me and me to Kevin.

I love you Kevin.

Happy Valentine’s Day