Agony of being Me: 2011

Saturday, September 3, 2011

Madness...


Because I am mad does that make me a genius?
Because I am genius does that make me mad.?
What came first the madness or the genius?

I self medicate to bring myself down.
I self medicate to pull myself up.
Does this mean I am bi-polar?

I have been waiting so long for something to change.
Can I change myself?
Should I try to change myself?

I am what I am, that is what they all say.
But do I have to be happy with what I am.
I am sick of feeling numb.

I cut the flesh to feel pain,
yet the emotional pain is what I am running from.
Would I rather feel pain than nothing at all?

I know I don't belong in your world.
But the truth is you don't belong in mine.
You can't handle my genius.
You can not handle my madness.
I will never be what you expected.

Do not ever cry for me.
Be happy in your own madness,
I will be happy in my own madness.

Saturday, August 20, 2011

A Life Well Lived

Waking to your children, wide-eyed, watching Saturday morning cartoons, with syrup on their breath is a life well lived.

Driving on a mountain road, wind in your hair, your favorite music ringing in your ears is a life well lived.

Making love to your spouse as rain pours down and thunder claps in the middle of the night is a life well lived.

Finding yourself in personal reflection with a notebook and pen in hand is a life well lived.

Reaching a goal, trying to reach a goal or even realizing that goal is not what you wanted, is a life well lived.

Having a personal relationship with your God and knowing he loves you no matter what is a life well lived.

Talking on the phone with an old friend, acting like you are in junior high again, is a life well lived.

Working hard for the things and relationships you have, and treating them all with respect is a life well lived.

Finding the love of your life and doing everything you can to keep them, is a life well lived.

Watching your children achieve and picking them up when they fail, no matter their age, is a life well lived.

Lying on your deathbed with the ones you love near, knowing you will see them again, having absolutely no regrets, is a life well lived.

Distant

Your green eyes are so distant,
What worries are consuming you?
Drawn to memories of the past?
I know they are haunting me too.

So bright I know you once were,
Full of life, overcoming your fears.
Now the dark is taking over,
All I see are mascara stained tears.

Your distance keeps growing colder,
Is all lost with your pain?
Black poison enters your system,
Those green eyes dilate again.

Mocking synthetic heat takes over,
You crawl inside your personal abyss,
Killing that desolate monster inside.
I can not look at all the hours you miss.

You are not dead, I know you are just lost.
We will  not leave you forever in the dark.
With much effort the agony will subside,
The scars will only leave their tiny mark.

My green eyes are so distant.

Monday, March 28, 2011

Its been a while...

I have not really written for a long time here it is over a month since my last post and almost two since any updates. I guess I just lost myself again. On the 31st of January I went to the hospital to have the left side of my thyroid taken out. The surgery went well, but my lungs didn't want to recover from anesthesia. I was only suppose to stay overnight but ended up being there for four days. I think the pain meds I was on had a lot to do with it. The scar was painful at first and the left side of my neck was pretty tender. Even to this day I get varied numbness on my neck. But I am healed and even off of the oxygen after being sent home on it for a few weeks.

My dear husband started a new job and he seems to love it. He is in his third week and I am so proud of him. I fear that I might be the one to make him quit because he is worried about me. I know that is a dumb thought but there are times when I am not stable by myself. My anxiety kicks in and I get so overwhelmed and sick. I try to remember the times when I was more than this. I feel like some crazy hermit woman, paranoid of even the mailman. I think with him gone I put so many expectations on myself that maybe I shouldn't. I will be the first to admit that he has been taking care of the kids and I for years, I have slacked off in my responsibilities as a mother, wife and housekeeper. Now he is gone I need to dig deep and get it done, even when there are times I don't feel like I can do it.

On March 17th I went before a Social Security Judge to try once again to get my disability. I didn't even talk to the judge, he swore me in and then gave a fully favorable decision. So now I just wait for it to be processed, and I  will be bringing in some money too. I should be jumping for joy, but now I just feel disabled. I guess I always thought that I would be able to go back to work someday, but now I know that is not going to happen. I am just thankful for the little things though. Now I can focus on being that stay at home mom and wife and "work on myself" like everyone has said. What ever that means. I guess I will go ponder that...how do I work on myself?

Monday, February 28, 2011

The River

Wandering through a thick dewy mist,
white clouds billow around her,
kissing her cheeks with dampness as she walks.

Distant cries of loneliness and fear are her only companions.
Who makes these sounds? 
Who is filled with so much pain?

Lost, drifting unaware of what way is forward and what is back..
Where did she come from? 
Where is she going?

Ahead she hears a river, 
wild and thrashing at the banks and 
within the jagged rocks throughout its depths.

At its shores she knows she must cross.
For behind her the mist has become dark, 
dark and heavy, too much of a burden to bare.

She paces along the edge of the tumultuous water
seeing if there is an easier way to navigate to the other side.
No such luck is hers, for every way looks even harder still.

As she looks on to the dark water with white frothy rapids
it begins to enchant her mind,
beckoning to her to plunge into the depths and return not.

She can not visualize what is on the other side. 
More mist? More darkness?
More cries of pain?

This she does not know,
yes it could be better but the river,
it sings to her a sweet soft melody.

After sitting at the banks for a time
she decides she must try to cross. 
Gingerly choosing each step she enters the river.

What she thought would be cold and icy feels warm and pleasant on her skin.
The water reaches her chest and she feels it start to pull at her.
Her footing is lost and the river screams at her as it tosses her too and fro. 

Loosing sight of the other side, she lets the river take her.
It pulls her under, its beguiling song now terror in her ears,
as water begins to fight its way into her lungs.

The river mocks her now,
taking her breath and breaking her will against its unforgiving rocks. 
There is no fight left in her.

The river has taken another victim. 
The river has won.
The River has won.

Monday, February 21, 2011

The Dark Painful Tear...

Pain outweighs the ability to cope.
Where do I find any glimmer of hope?

Standing as I watch the world go round,
only to feel my feet sink further into the ground.

Four pairs of eyes sparkle, their smiles like mine.
Holding onto them tightly keeps me from crossing the forbidden line.

Is that enough? My demons jest...
It isn't a mater of if, but when I guess.

Yearning and hoping for a drastic change.
knowing these thoughts are dark and deranged.

It's not who I am, It is not me!
 I pray I can find who I used to be.

Who is she anyway, the woman in the mirror?
The one that sheds the dark painful tear.

Tuesday, February 8, 2011

Nightmare...

She looks at the clock, ho much more can she take
wandering inside this black abyss?
Her vision is clouded by ghosts of the past.
Fear...No terror runs through her veins,
like shards of ice chilling her to the bone.
She tries to scream, but words don't come,
lungs empty aching for air.
No one is there to help her through this maze
of twisted lies and hallucinations.
"Help me!" She call out over and over,
her words are nothing but mere whispers.
Not enough to penetrate the darkness
surrounding the vivid nightmare.
She reaches our for something, anything,
dying to hold on to something real.
He is there, the light fills her eyes.
He is there to save her!
No more wandering in isolation,
he is by her side.

Thursday, January 27, 2011

Eternity...

For time and all eternity,
our love continues to grow.
To be with you forever,
oh the joy it gives my being.

We began on this earthly sphere,
young, naive and in love.
Our trials bring us closer,
they could have ended us.

You are my lover, my hero, 
and my best friend.
I envision us old together
letting life pass with joy.

With faith and hope
I pray death is not the end.
For time and all eternity
our two souls together will spend.

My Husband...

My Husband

He remembers what I was wearing the first day he saw me...
He was the first man to dance in the rain with me...
He took me on a 3 hour drive just to get a raspberry shake...
He is tall and handsome..
He makes me feel safe...
He makes me feel beautiful...
He is emotional but hides it well...
He is a great father and loves his kids more than anything..
He is very smart, and loves being called a geek...
He helps me better myself...
He is an excellent cook...
He brings adventure to my life...
He taught me what it feels like to be loved...
He taught me to truly love... 
He accepts me regardless of all my faults...
He supports me through my trials...
I love him, and will love him forever.

Update...

Here I sit at yet another doctors appointment. I have had appointments every day this week. Surgery is on Monday I am a bit nervous but I know all will go well. I guess I will be staying at least overnight. I think that is a good thing, but I will still be going home with a drain in my neck. If when the doctor opens me up and sees that I need the right lobe taken out as well as my left I guess they will just do that as well. It is nice to know that a diseased part of my body will be removed, damn thyriod. I hope after it is removed that I will feel some ease of symptoms that thyriod disease will cause. My levels have been up and down and all over the place, that could have caused my weight gain, tiredness and anxiety and depression along with many other things. It sure has been a roller coaster of a ride, maybe this surgery will settle some things down.

I was sent a letter the other day from a GI doctor that is doing clinical trials of a new crohns disease medication. Apparently the trial will run for 16 weeks. And if I qualify and participate, I will be reimbursed $250 for my time. I figured why not do it if it may be able to help my crohns and eventually other people. All it will mean is more doctors appointments, so I will be consulting with the doctor today. I will let you know what happens.

I went to a new pain management doctor yesterday. He seemed like a nice guy. He once again diagnosed me with fibromyalgia. The test hurts so bad. He placed pressure on 18 pressure points, and 16 out of 18, were very painful, I almost cried by the time he was done. He referred me to a physical therapist, recommending warm pool therapy. I am kinda excited about that, I set up my appointment with them, but might have to reschedule due to surgery recovery. He is also going to try injections in my back. I have had these before with my previous pain management doctor. The first worked very well and helped for a couple of months, but the second didn't seem to work at all. I don't know what the new injections will do or if they are similar to what was done before. But I figure it is worth a try. He is also going to treat my pain, more than likely with narcotics. My pain has been so bad it will be great to have some sort of relief. He did say he refused to treat my pain from the crohns disease. That is a catch 22, because when my symptoms flare the abdominal pain is so great, it is hard not to have some kind of fast acting pain relief.

I have been lectured by every doctor about my weight. I am at the biggest I have ever been and I am very humiliated by it. Because of my pain and depression I have not been very active. I think some of my medications and my thyriod might have something to do with it. But I am trying not to make excuses and take responsibility for my weight. I have been overweight my whole life. It really effects my self esteem. I am trying to watch what I eat now and urging myself to be more active. I know my weight has a lot to do with my health issues, I am not dumb. But it is still hard feeling like a failure, knowing that I have done this to my body. I need to change it and really work on it, instead of just thinking it will change on its own, I am tired of letting my weight and my body ( illnesses and such) getting me down. It is not who I am. My weight should not define me but unfortunately I let it.

Friday, January 21, 2011

Problems...

My problems are defiantly obstacles in my life, though I need to rewire my thinking and make them opportunities. When a problem arises my anxiety and fear kick in. I don't automatically switch to problem solving mode like it used to. I am a "what if" girl, so my mind wanders to the negative all the time. When that happens I start my downward spiral of anxiety and depression and fear. What if the problem can't be solved? What if the problem won't go away? What if the problem creates more problems?

Let take an example and explore how I react to a certain issue that has been in my life. For instance a big problem right now is the state of my family's financial status. I have not been able to work for over four years and in that time my husband has worked off and on, we have had no steady income. This has resulted in loosing our home and living in a homeless shelter over a period of six months. It was a rough time being there but we persevered and make it through. We finally got a place to live with a bit of assistance, well it was a lot of assistance they helped us with six months of rent. When the time came that the assistance ran out we still didn't have a job. The huge problem of trying to figure out a way to pay rent came up. I tossed and turned at night and made myself sick. I would have panic attacks and suffer from chronic headaches along with all my other aches and pains. I went through a lot of fear thinking that we would fail again and have to find ourselves back at the shelter. The shelter was not really a good experience, and finding my family back there was a scary thought. My husband found a way to take care of rent for the month but until steady employment is found, that fear is still fresh in my mind.

Now how do I rewire this fear and anxiety and "what if's". I think rewiring is all about your outlook and perspective of things. If I could just focus on what I learned while in the homeless shelter and how much I grew, then maybe the fear wouldn't be so strong. Of course I don't want to go back there, I would never wish that on anyone. But we learned so much while we were there. Now my husband has had many good applications put in, and a couple of great interviews.  I know in my heart everything will be OK but there are still the fears, I have a unending fear of failing, I need to try and get that into perspective too.

I believe among a lot of things that we are here on this earth for reason, and that reason is to be tested. How are we to be tested if we encounter no problems? I believe the problems and challenges I face in life, weather they are my illnesses, my finances or whatever else may come my way, are part of refining me and will only make me a better person after the trials are over. So in a sense my problems become opportunities to better myself. If we face a problem head on we will learn and grow from it, it really is all about perspective and outlook. That really is something I am trying to learn. As I learn how to change my outlook on life I will accept my challenges as test I have to take to make me a better person. I am stronger in many ways because of the issues I have faced. I am weaker too, but only because I have not worked hard enough to deal with the things that have made me weak.

Thursday, January 20, 2011

Invisible...

Hot tear stream down my face,
I turn out the lights and try to become invisible.
If I can be invisible no one can see my pain. 
The toxic tears I shed are hidden. 

Hiding from the world I try to find solace. 
How will solace come? 
Looking inward to all the scars,
How do I let them heal?

Invisibility is the cloak I don
But I just want to be seen.
Seen for who I am on the inside
Not just what the outside shows.

To see me is to know me
I wear my emotions on my sleeve.
Take my cloak away
and help me wipe my tears.

Don't let me turn the lights out,
I want to live my life!
Don't let me be invisible anymore!
Please help me let go of the fear.

Wednesday, January 19, 2011

I should have cooked dinner...

This evening my husband had a job interview. I was here with the kids and let time slip by without thinking about dinner. Well I thought about it but when I went to go find something to make I got nauseated, and since the kids weren't complaining about being hungry I shrugged it off. So my husband gets home after a long bus ride and is frustrated at the kids instantly and asks what I made for dinner, and seems mad at me because I failed to make something. I instantly felt like a bad mom and an even worse wife. I know I should have made dinner, and I am sorry I didn't. Why has this got me so down?

I attended a group therapy session today. It is a Dialectical Behavior Therapy class. We talked about distress tolerance. First we discussed the ways our body naturally uses anxiety and fear, and also how the body naturally calms down from these things. In this day and age we tend to not reach that let down phase of our natural reactions, or stress keeps us in a constant state of anxiety. And when we don't get release from that anxiety we begin to do many things such as, sleep to much, eat too much, take more pills, abuse alcohol or drugs, isolate, hang on to things we should let go, get aggressive or overly passive, just to name a few. The symptoms can be great. So we have to learn how to cope with our stress. Notice I didn't say manage stress, coping with stress is different. When we use distress tolerance skills we help our body reach that natural let down phase.

So there are many ways to improve the moment.  We listed 7 ways in class that we can utilize. They are; The half smile, half smile and notice your surroundings. Positive self talk, tell yourself you are beautiful. Genuine hello, greet someone or meet someone new. Define your purpose, find the meaning, purpose or value in pain or anxiety. Honesty, be honest with yourself and with others. Self care, take a nice bath, do something to make you feel better. 20 minute time out, take time to breathe, give yourself a brief vacation. 


So over the anxiety I got for not cooking dinner and perhaps getting my husband angry at me ( i know it sounds so 50's housewife, it really isn't) I came here for my 20 minute time out. I really didn't know what else to do. Did it work, I am not sure yet.

Tuesday, January 18, 2011

Painting nails...letting go of the past...

You know you have had a boring day when all you feel you have accomplished is painting your nails... ugh I know this fact of my life is very, very sad. I did paint my nails with the kids though, I guess you could call it quality mom and daughter time. Seriously that is all I accomplished today. Victoria and I spent all afternoon listening to music, then we all decided to paint our nails before dinner. I love spending time with my daughters, they help me to enjoy the little things in life.
Someone I knew a long time ago came back into my life via facebook. We parted ways about 15 years ago, and the parting didn't go so well. I had a lot of anger and disappointment. But we both moved on with our lives and let a good friendship pass us by. Now after having been talking to him again, it seems the friendship is still there. Or at least it is trying to be. I really think this will be interesting to see how this turns out on a personal level. Either way I tend to think the old wounds are trying to heal. It is amazing when after so long, when someone says they are sorry and that they made a mistake, how easy the healing process can take over.
So herein lies letting go of the past. I don't know why it is I hold on to so many things. Maybe it is because I am an emotional being, I always have been. I don't believe I can ever forgive and forget, but forgive and move on sounds like a reasonable option. So if I can do that in regards to my relationships with others can I forgive myself and move on with my life? I guess that is what I am trying to learn how to do. 
Since I got sick and could no longer work I started blaming myself for all that went wrong in my life. OK I guess I blamed myself for everything even before then, but after I started tearing myself down even more. I used to live by the motto that things happen for a reason, I still want to believe that, but I seem to ask why way too much. I guess I always will. Is it wrong to ask why, and still try to be happy? 
Several years ago I decided all I wanted out of life was harmony. Like a symphony I wanted all aspects of my life to blend together in beautiful melody. But now I understand that harmony does not happen without work. I can't just wish for harmony and have it happen, I have to put in the effort. So letting go of the past needs to be one of my many steps. Moving on and enjoying painting nails with my daughters. Breathing everyday, laughing, loving, singing and even crying, but most of all living.

Thursday, January 13, 2011

Of the sign Ophiuchus:

LIST OF KEY WORDS OR ATTRIBUTES TO DESCRIBE THE SIGN OF OPHIUCHUS: Those I think pertain to me I will put in bold... we will see if this "new" astrology sign is right for me.

· interpreter of dreams, premonitions
· attracts good luck
· serpent holder
· lofty ideals
· a seeker of peace and harmony
· doctor of medicine or science
· to add, increase, join or gather together
· poetical, inventive nature, expanding
· seeks higher education
· overseer, supervisor of work
· fame - either grand or completely misunderstood
· longevity, aspirations of healing the ills of man
· architect, builder, reaches for the stars
· tax assessor or levys taxes
· astrological talents, intuitive
· large family indicated, but apt to be separated from them when young
· the number twelve holds great significance
· foresight to benefit from hard times
· has secret enemies in family or close associations
· many jealous of this subject
· notable father, apple of father's eye when young
· high position in life expected [depending on aspects] highest fame and legend comes after death however
· feelings of granular, wise,
· likes to wear clothing of vibrant colors
· receives the favor of those in charge

Monday, January 10, 2011

Orange juice...

It is after 11pm and all I wanted was some orange juice before bed. Today was a hard day, I have had a lot of emotion in regards to how certain people treat me. I feel like I am seen as a third class citizen because of my financial status. I won't repeat the words that have been said, but the person who said them was very hurtful, and I respect and look up to her. Is this how everyone feels? Am I a leach on society? Am I starting a vicious cycle of welfare in which my children will continue when they get older?

I have always worked for everything, and they day came where I could not work anymore, because I am sick does that mean I am a failure? Tonight I cried because of many words said and unsaid. She will never know how she has hurt me...no one that ever hurts me knows that they do. I keep it to myself, add it to all of the emotional battle scars I have acquired over 33 years. So I go now and drink my orange juice, forgetting how it was paid for, and knowing everyone falls on down times once and a while. I didn't ask to be this way, and I won't be like this forever. And because I am going to sleep in a rented home on the bad side of town does not make me any less of a person than the person sleeping on plush splendor in the sleek mansion up on the hill. Goodnight.

Sunday, January 9, 2011

Strawberry Patch...

Six years searching through the strawberry patch,
Only to find that the frost came too soon.
The fruit I have born has made me happy,
But will it help me through the fear of being alone?
Mist clouds my eyes as I think of all she is,
And all she has that I do not.
Yet I have things that she can not hold near,
Why do I think she is so much better than I?
Things will change…with that you jest,
Trying to make it seem less painful.
The wounds just keep getting deeper…
But I am the one with the sharpened blade.
Six years searching through the strawberry patch,
Only to find that the frost came too soon.
Who said it was strawberries I wanted anyway,
Maybe the blueberries taste just as sweet.
Mist clouds my eyes as I think of all she is,
As thoughts of what she wants to be,
Drown the screams that seep under the door
As I slam it closed leaving the past behind.
My spirit beckons, will it ever really change?
Peter thinks it is easy, yet he has more on his side.
Here I am on my cliff, it is a long way down.
Learning to fly…so I say it is.

He tells me just to be happy,
Do what I feel best.
I know what will make it so,
It is a long way down... who said it is down anyway?

Victoria (written 4 years ago)

This morning as I watched my daughter wait for the school bus, my heart swelled. She slowly sauntered across the street, her red hand-me-down coat, getting sprinkled with fresh falling snow.  She only looked back at me once, as she walked, as if to say "I am alright" or to check to see I was still there watching. She was the first to the bus stop.  As she stood there alone, all I wanted to do was go take her in my arms and keep her close to me. I wanted to hold her as I did when she was a baby, keeping her safe from any harm. As the other kids arrived, Though I could not see from where I was standing, I new her face was bright with her quirky smile, the one that shows her newly missing tooth.  I was happy that she is so confident in herself and I loved the fact that as she rode away sitting with the older group of kids that are her "friends" I knew she too was happy.

As I went back downstairs and thought some more, my heart was saddened at all that I have put her through. The many times we have moved and even this last move where she had to change schools.  I remember her glossy eyes looking up at me telling me she will miss her friends. I also remembered feigning confidence when I told her she would make many new friends at this new school. I never doubted she would, I just dreaded the day when I would have to make her leave this school. I thought of all the things I put on her tiny shoulders, and all at once I regretted ever being the one to make her cry.  She is my oldest and I am certain she gets the bulk of all punishment my young children endure.  She gets hollered at first because the is the oldest and should know better.  Yet she is only five! Where did  get the idea that she does know better, and I need not teach her daily anymore?

I thought again of the sleep in her eyes this morning, after knowing how late she stayed up, having resisted going to bed several times.  I thought of how I looked to make sure she was awake, only to find her out of her bed and snuggled into mine. I thought of the endless nights in the hospital, when she was just a newborn fighting to survive the hard blows that life had already dealt her. I knew how strong she was then, and how important she would be here in this life.  I would trade her places in a minute if I thought I could save her from any hurt,  but I know that  is not a choice. I know that I am the one  that needs to help give her the tools to succeed. Even though this morning it was watching her go to kindergarten, I  felt the  pain that only a mom can feel when she realizes her baby is growing up. I can not keep her under my wing forever.

She has been gone less than an hour and I miss her so much.  I can not wait till she walks through the door, papers in hand, filled with pride at the hard work she had done. I can not wait to see the bright way in which she greets her sisters and the smile they have on their faces at seeing her too. I can not wait to hug her and hold her and tell her how much I love her, and her her say those words in return.  I know we have been through a lot, and I vow to change that and give her more stability. I know there is not much more I can do, other than love her, and teach her the best I know how. 

And as with all of my girls I never new it was possible to love someone so much.  The way I feel about my children...the word love can not even wrap itself around the emotion.

Destiny...

I don't like her smile, as she hands me my drink.
Destiny, that is what they call her.
I don't think the name really suits her.
It is not a fluke that this is not what I ordered.


Do you believe in the thing they call destiny, or are we just all here, getting by on what we are given. I have had the feeling of Deja vu' before, I really feel that this is destiny's way of telling me I am on the path that was chosen for me.  Or Gods way of telling me the path that I am on is the same we discussed before I came into this crazy world. I think we all make choices that obviously effect the path that we are on. But does destiny know what choice we are going to make.

Did she serve me the wrong drink,
or did my mind just cloud over the real flavor.
I still don't like her smile, as she hands me the bill.
Life doesn't come cheap, but is it what I choose?

Words...

Words are strong. They bring emotion and feeling, a simple sentence can build one up or tear one down.  I have always been a fan of words and the way they are used.  I may not bee the best speller or use the most perfect grammar, but I still love the power of words. I love that they can be straight forward or cryptic. I love that they can be strong or soft and sweet.   Words can bring fear or comfort the fears away.

I have decided that approval is not necessary for me to keep writing. I know how words affect me and the way I want to use them.  In times of contemplation words form in my mind, they may not make sense to many, but to me they hold my feelings and dreams, sometimes my past and my nightmares.  But they are my words.  I enjoy them and I am somewhat proud of them. They may not ever be anything more than my words, but at least they are that and I have the avenue to give them breath.

Am I on the outside looking in…

Am I on the outside looking in…
Or on the inside looking out?
Which is the road that I have been traveling?
And which is the road before me?
Tell me the world is flat,
and I will believe you.
What does this say about me?

The pink fades to shades of violet,
Yes we've been down this road before.
I don't know my way back
My map is distorted.

Please don't follow my footsteps,
I fear they  are haunted.
Just tell me we will be ok,
And I will try and let it be so.

Just because we have been here before,
Dosen't mean that I like the weather.
But You still tell me the world is flat,
And I still believe you. This says everything about me.

Saturday, January 8, 2011

Went to the doc today...

I went to the GI doctor today. I had been seeing a doc up here in Ogden but she didn't seem too helpful so I set an appointment to see my old GI down in Salt Lake. My friend Alisha drove me so I didn't have to take a long bus or train ride, I am getting so sick of not having a car. But anyway Alisha kept me company while I waited unusually long. The doc was pretty busy and It seemed like I was the last patient of the day. We talked about what was going on and decided to get me back on the remicade infusion that I was on before I moved to Ogden. It will be some work to try and get the infusions done up here but I think it will be worth it to get my crohns disease under control again. When I am flaring all the time it really makes an impact on all of my daily activities. So we talked about it all and she actually gave me prescriptions to manage my symptoms, where the doc up here was reluctant to do. I don't know what the harm is in giving someone meds to help with diarrhea and nausea/vomiting. Seriously helping the symptoms is half the battle with Crohns disease.  So now I just need to hear back from them on Monday and see what we are going to do in regards to the infusion. This means I don't have to give myself shots at home anymore Yay!

I also found out that I will be having the left lobe of my thyriod taken out on the 31st of this month (January) this is another reason we want to get the crohns under control. Having a major surgery and flaring at the same time is not really a good combination. So I guess I have a lot of things going on this month in regards to my health. But really it is nothing new. You get to a certain point where all the medication and doc visits and even surgeries feel kind of routine.

I was also able to get my doc to fill out some papers for my disability lawyer. I have been fighting disability for over 2 years now and we have finally got notice that social security is getting close to set a trial date. This will be a huge ease on the mental stress I have had not being able to work. It is kind of amazing the feeling you get when a doc actually validates everything you have been going through on paper. I just hope the date can be set soon and I can put this fight behind me. I am still in awe about how the whole process has gone, getting denied so many times in the face of what my body has gone through. I know they have to have some sort of system down to weed out those that are trying to take advantage of the "system" but I have had so many medical records to back my case up. Its like they want you to have to spend money on a lawyer and go through the whole hoopla. I remember being so naive when I first applied thinking that I would actually be approved. With all hope I will get approved this time around and get it all settled. My lawyer is positive I will be approved, but I am to the point where I don't want to count the eggs in my basket just yet.

Today was the first time I have been out of the house in weeks. I know its sad to admit it but it is true. Even though it was just for a doctors appointment, it felt good to get dressed and ready and get out. Even my husband joked with me that he forgot what I looked like with make-up on. How sad is that? I know I really need to work on some things... like staying motivated and not being so depressed. It is just hard to do when your body seems to fight you at every turn. I guess I need to start fighting back. I can't let all of my health issues bring me down like they have been, that is just a hard and lonely road. I just have to remember that I am not alone. I have four beautiful daughters and a wonderful husband that help me and support me in every way that they know how. I also have many great friends, those whom have stuck by my side through thick and thin, even when I try to push them away. They just keep coming back and I love them for it. Like my friend Alisha, she has helped me through so much, and today she got to know more about crohns disease that she probably ever wanted to know. She was also by my side during one of my thyroid biopsy's. All she kept saying was how strong I am... well I disagree with here there. I don't think I am very strong. But I do what I have to do, or try to do what I have to to maintain any health I have left. Its kind of like a fight or flight mode I guess. I only show that to people I have to though. I am a pretty big wimp if you ever really get to know me. Ask my husband he will tell you.

Thursday, January 6, 2011

Here I am...

Last night I had the worst paic attack in my life. I couldn't breathe and was shaking and sweaty and could hardly talk. In an attempt to calm me down and try to get me to listen my husband began to lecture me. At least it felt like lecturing. He began telling me that since I was diagnosed with crohns disease 4 years ago he feels I have given up on life. I wanted to yell at him and tell him he was wrong, but there was some truth in what he had said. I did give up. I did feel helpless in regards to what my body was putting me through. I was hiding from what I had become. I lost myself, and I dont know where or who I am anymore. So here I am. In an attempt to find myself again I will write.