My Wish

A month ago, I went back to work.
I went back to work because I had to. For my family. For myself.

Its bad.

I’m tired. I’m in pain. I’m grumpy.

But I continue to push. Pushing myself towards death. That’s what it feels like. Death.

I am pushing myself off the ledge.

But it’s still not enough. I’m not enough.

I wish….. I wish they could see how hard I’m working. On my feet 6-8 hours straight. Now most may laugh…. “only 6-8 hours”, well those hours are like 24 hours straight to me. You see I have arthritis in my spine, shoulder, feet and hands. I’m carrying plates, trays, glasses. I’m carrying the weight twice that others are, or that what my body feels like. I have to grip harder, hold tighter.
I wish….. I wish they could feel. Feel the stress, feel the pain.
I wish….. I wish they knew how it felt to drain your soul. To push yourself to the point of tears… and to keep on pushing till there is nothing left.

I’m torturing myself. I am my own terrorist.

I’m giving so much to my body, there is nothing left for my family. Everyone hates the other. There is no love in my house. My oldest has been babysitting for me. She hates it. She hates me, she hates her brother and sister. She hates her life.

I’m trying so hard.

I wish….. I wish I could give more. Be more. Do more.
I wish….. I wish I could stop letting others down. My family, my employers, my coworkers.
I wish….. I wish I had more to give.

You see, I have Celiac Disease. I work in a restaurant.  I am constantly around the demon that weakens me. Like Superman working at a Kryptonite warehouse. It takes everything I have. The contamination. The poisoning. The pain. But I keep on going… I have to.

I hate the feeling that it just ain’t enough. I’m not a good enough employee. I’m not a good enough mother. I’m not a good enough friend.
I need to do more, be more. I just can’t. I can’t do more.

I have been a stay at home mom for a long time. A decade. Honestly I wasn’t very good at it. I would do what I could on good days, but those bad days I never did enough. But I tried. I made sure my kids were clean, fed, safe and loved. Maybe the dishes weren’t done, and the dust was out of control, but I learned to get over that. I got up every morning to get the kids to school, did what I could do while they were gone and was there when they got off the bus. I helped them with homework. I made sure the necessary thing were done. Yes, there were days my children watched me crying from the pain. Yes, there were days I couldn’t get out of bed. I truly hate that my children have seen these days, but there is nothing I can do about that. I just hope it makes the stronger and more compassionate adults. I had time for theatre, one thing that made those bad days a little bit better. I wish I could explain what it feels like to be on stage. To be apart of something. To pretend to be someone else. To make people laugh… or cry. It’s my soul being to be on stage. If only I was as good at it as I am passionate about it. But I don’t have that this summer.

I wish….. I wish I was more.

You see, I have a blood disease. My body acts as though I have cancer, but I don’t. My immune system is shot. My WBC is high. My blood rejects protein and essential vitamins needed to live. My body don’t process…. anything. I am tired, all the time. I have chronic headaches. I awake with a headache, go to sleep with a headache. Everyday.

Because of all this my family suffers. Because of me.

I wish I could be healthy. I wish I could work full-time, take care of my family, keep my house clean, be active with theatre and still have time to have fun with friends. I wish I was like others. I wish I could but I can’t.

I wish I could give you more.

But I keep going…. keep giving it my all. Why? Cause I have to.

image

Funny how my husband warned me that I couldn’t do it all…. he was right.

Broken

I am broken as a person….
I’m not the strong woman I like people to think I am.
I’m tired and weak.

I am broken as a mother….
I have no patience, tolerance or heart.
I’m lost and uncontrollable.

I hate how I let the pain control me…..

There are days I just want to give up… end it all.
Yes it’s sad to think that, to think of all the people I would hurt. I am so tired of living this way, pretending…

I push, and push…. but it’s still not good enough.

I am a wife….. a wife who is in too much pain to love her husband fully.

I am a mother….. who is too tired to spend quality time with her children.

I am a friend….. who is too sad to have a good time.

image

Who am I?
What happened?

How did I break so easy?

In a few weeks I will be turning 40…. ahh the dreaded 4 0.
This year has been hard, this birthday.. even harder.

As you may know, this year I went off all my meds. I thought I could handle the pain, anxiety and sadness, I was wrong. But if I go back on the medicines it shows weakness. So many were so proud of me, how can I disappoint them? I seem to be doing that a whole lot lately.

How can I put the pieces back together?
How do I become unbroken?
How do I stop the tears?

Living with the pain…

A while ago I posted a little ditty “Tired of living like I’m dying”. So this is just an update on my progress such far…

Life has changed….. I have changed….

I am officially 1 week off ALL my medications!!! Yes, and believe it or not, I’m still kicking.  A month or so ago I went off narcotic pain killers… the WORST week of my life. In all honesty if it weren’t for my husband and kids, I wouldn’t be here. As hard as it is to say… Yes I would have killed myself. The pain… the excruciating pain… not only body pain but mind pain, I can’t even explain what I was feeling. Though as you can see… still here, still kicking. I’m dealing with the pain.

image

That brings us to today… no anti depressants or anxiety meds… no pump inhibitors, no muscle relaxes, no arthritis meds…… Nothing. I went from 16+ pills a day to none.

Guess what? I’m living with the pain!

It’s not easy. I think about the pain meds every day. I miss that relief. I hate the pain. But I will NEVER do that to my mind or body again.

I’ve been doing a lot of research on healing my body naturally. I can’t erase the arthritis, the osteoporosis, von willebrants, the immune response, celiac, thyroid and other ailments… but I can improve them.

All I can do is continue the fight…. this time I’m winning.

image

Tired of living like I’m dying…

image

So a week ago I decided it was time…. time to quit the narcotics. This isn’t the first time.

I hate pain killers. I have seen first hand what they can do to you, it’s not pretty. I have seen addiction, I have seen despair.
No. I am not addicted, my only addiction is nicotine. Which is another thing I will be trying to give up in just a few days. Not happy to do it, but it needs to be done.

I want my body, mind and soul back.

I hate the feeling of dependency. I have been on the pain killers for 2 years this time. I can’t do anything without them. Now mind you, they don’t take away the pain, I was only taking 20mgs a day of vicadin, they would allow just enough relief to get what I needed to get done… or what I could get done.

This week has been HELL! My body hurt from head to toe, I couldn’t stop shaking… the internal bone pain was so intense, I actually felt like I would be better off dead. My brain wasn’t working, my muscles were locked and my head felt like little mice were in there chipping away at my skull. It was excruciating. But I made it…. and I am not looking forward to next weeks nicotine withdrawal.

People close to me know what I’m going through. People like me understand the pain. Though most people around me, don’t get it at all. They don’t see me… they only “see” me. They see a petite, skinny woman. Most people “hate” me cause of my size. If they only understood how much I hate me too.

I’m going to share why I am the way I am. I don’t tell many people my personal health issues unless I trust them, but today I’m telling whomever will listen.

First, I have osteoarthritis (hands, feet, spine, and hips) and osteoporosis (40% bl). There are days, especially during winter and certain weather pressure that I can’t move, I can’t grip and I shake. This causes deep muscle spasms, and pain that only one whose experiences understands.

Second, I have a blood disease that causes me to not make enough red bloods cells or platelets. My white cells are always elevated, causing my immune system to shut down. Which is why I spend a lot of time in the hospital with pneumonia. My blood is thin and dark, strange combination. I have Von Willebrants disease, and auto immune disease. Honestly the doctor’s are still searching for answers, on why my blood changes so quickly. My body lives like I have cancer, though I don’t. It’s hard living safely when you’re a mom, I have to remember, one fall… one accident, could make me bleed to death.

Third, I have nerve damage, though the doctor’s say it’s fibromyalgia. Until there is a test that positively says I have something I don’t believe it….

And last but not least…. the freaking gut… celiac disease, IBS, and gastritis. My stomach hates me! I don’t eat gluten, acids or pork. I can’t gain weight. I try and try but I can’t.

So you see…. I’m a mess! I try so hard to live life positively, but there are days I have to be human. I have to live though. I have to mom, wife, friend, sister, daughter. I can’t lay still and allow myself to die. I wake up everyday praying that my body can heal itself… but how can it when I’m shoving one pill after the next in my mouth. You take one for this…. but you need this one to counteract that one, and these cause this, so now you have to take that. I’m plain sick of it. I’m tired of living like I’m dying!

So first…. goodbye pain pills. I can only do one at a time. Soon it will be goodbye nicotine… then anti-depressants… than stomach pills and last arthritis pills. How can I heal when all I am doing is suppressing it? So I’m going back to healing it naturally. I’m so tired of being tired, depressed and in constant pain. What kind of mother allows her children to see her like this (though I hide as much as I can). What kind of wife am I if I can’t allow my husband to hold me cause it hurts? What kind of friend am I when I stay locked up in my house so they don’t see the pain?

I’m tired of living like I’m dying! I’m taking my life back.
I need to be here, for as long as I have left, I need to be strong.

So those around me…. My family, my friends… bare with me please, I may not seem like myself for a little while, I’m learning to live again…. learning to live and push through the pain… and hopefully I’ll be back stronger than ever!

If I only knew…

It’s a bad day.
I am sitting here in utter pain, out of meds for four days. Those that know what I’m going through….. Yes 4 days.

I’m sitting here reading some old poetry I wrote between the ages of 10-21 years old. It’s funny how dramatic life was at 14 years old!

If only I knew……
If I only knew my dreams would fade…..

When I was young, before I was a teenager, I thought life was bad. I went through more than any child could go through. I hid my pain. I hid my tears. I was a mess.

But… I had dreams, I had hope, I knew that the pain would end.

Boy was I wrong.
I was sooo wrong.
If I only knew.

Now I see so much of me in my son and daughter. I see the pain. I thought giving them love, and stability…. well I thought it wouldn’t carry to them.

I was wrong.
If I only knew.

I daydream a lot.  I mean a l o t……
I play parts when something needs to be done.
But it helps, at least for a little while.

If I only knew….
If I knew it would be this hard….

It’s a bad day. It’s a 10 day… if I only knew how do just deal.

image

If I only knew….

The world’s my stage….but I’m tired

I am so tired…. literally the sleepy, lazy kind. There just aren’t enough hours in the dark.

It’s not that my life is exciting or busy. I’m a stay at home mom. A disabled stay at home if you ask. I cook, clean, do homework, make beds, go on field trips, volunteer at school and with in the community. I enjoy my life, I love my family, but I am just so freakin tired of dealing with one health problem after another. I done with the pain. I try so hard but some days my house can look like the Sanford house. It not only makes me feel terrible, it makes me feel like a loser, and no one likes to feel like that.

I am hardcore involved with our community theatre, it is my home away from home. I feel better on stage than I do anywhere else. Now let me tell you, I’m not the best actress, but I do ok!  We do 4 productions a year and have November-February off. (Winters can get hectic in the mountains) I’ve been pretty active the past few years. If I’m not on stage, I’m painting it. It makes me feel alive, it kills me pain wise but fills my mind with such positivity and emotion that it kinda helps ease the pain. It helps bring me out of my “funk”, and my theater family is beyond awesome! (That’s another blog…one day)

This is also the time of the year I have the biggest love/hate relationship with myself. See I suffer from winter depression, it is also the worst time of year for my arthritis. But on the other hand, I love (and I mean seriously LOVE) the holidays!

But this year it’s different… I’m exhausted, and in more pain than I have ever been. I hate complaining, especially when I am the one doing the complaining. (Another reason for starting this blog…. So I have a place to complain 🙂 

I need a winter activity…. I need something…. I need to be around people…. I don’t want to feel this way any more.

It’s just the pain talking…..

Plain and simple…. I am a medical mess.  I don’t know exactly when it all went down hill, I just know it’s been over 20 years and very few answers. Of course Dr’ s and specialists have had there answers, just to have another Dr shut down their diagnosis. It has been an ongoing cycle of no answers.

I have been diagnosed with everything from lupus, fibromyalgia, to death. It has only been in the past couple years of actual real scientific answers. Let’s start with the easiest… von willebrants disease, just your run of the mill hemophilia blood disease (now I know why childbirth almost killed me), osteoporosis (thank you hysterectomy), osteoarthritis (yay, great), IBS (irritable bowel syndrome… need I say more), gastritis (why not add a little more pain), extreme internal hemroids (thank you children), migraines (let’s just thank everything for these bad boys), depression and anxiety….. really, you think?

Of course now my biggest wait is testing on my heart and lungs… I tend to get pneumonia at minimum of once a year, my lungs have actual scar tissue or “something” (stupidest spots that don’t go away). My fingers are “clubbing” (don’t know about it… Google it’s gross.) So Dr is concern. So we wait on more tests…. it’s always something.

Ok, so there is a small just on me… I’m sure I am not alone. My heart goes out to all that suffer from a chronic disease.

I have tried coming to grips with my health… but it’s always there, I can’t just ignore or run away from it. I can’t let it run my life either! So everyday I fight. Everyday I open my eyes and pray that today is better than the day before. I try to stay positive, so not to bring others down with negativity… that is real important to me.

I am a mother of three, a wife, a friend. Not a “feel sorry for me” victim. I hate that I live this way, that I have to live this way. It’s not who I am, or who I’m meant to be.