Irony

His accusations never seem to cease.

He firmly believes that I am someone I am not.

He believes I am a selfish, jealous, manipulative woman that seeks to control and change him.

He told me in the beginning he was basing what he thought of me on his experiences with previous women he had dated.

Had he taken the time to get to know me, he would have been able to accurately determine my character.

Had he taken the time to get to know me, he would have been able to see what I could and could not do.

He still refuses me that.

He still refuses to take the opportunity to get to know me.

If he were to do so now, he could accurately determine who I was.

He could then discover that I have never been what he accused me of.

He could then know who I am.

Then, if he chose to reject me, he'd be rejecting me for who I am.

That would be easier to accept.

Instead, he chooses to reject me for someone he convinced himself that I was.

His reasons for doing so don't seem to matter anymore.

What matters is that he chooses to cling to the false belief that I am like every other woman he's ever dated or known.

One day he'll realize he was wrong.

If only....

If only I could hate him.

If only I could shut down all emotions.

If only I could be as emotionless as he appears.

Then it would be easier.

For the short term.

For being all those things would also mean that I would not be true to myself.

I am a person with a depth of emotion. The depth of pain I feel now enables me to also feel the depths of joy and love that I am capable of feeling.

It's worth it.

Even if it doesn't feel like it today.

Questions

How many tears can one person shed in a lifetime? 

How many times can a person make the same mistake?

Is it a mistake if you genuinely believed at the time that you were doing the right thing? 

How much heartache, bad news, trouble, and pain can the human heart endure? 

How much physical pain can a broken body endure before insanity comes?

How many people must betray a person before they cease to help others? 

At what point does one cease to hope? 

How long will those that deceive, use, take advantage of and willfully destruct others succeed even as those that reach out to show compassion get struck down again and again?

If we all know life isn't fair, why do we hurt so much when that unfairness impacts us yet again? 

How is it that people can say all the right things, but never mean them? 

Why do people expect so much from others when they have no desire to give in return? 

Is it truly dysfunctional to continue to love those that can not care about you, simply because they do not have love for themselves? 

When a person that is, at the moment, incapable of love and compassion and assaults you verbally, should you still reflect on what they have accused and allow it to haunt you? 

Why do people leave when you need them the most? 

How much can one person take? 

Has a person ever died from physical pain from a broken and diseased body? 

Do people die from heartache when it comes year after year? 

Are some people destined to have tragic and heart rending lives? 

Why do people have to pay for another's sins? 

Why do people pull away from those that genuinely care about them, only to cling to those that use them? 

Why do people sling accusations against genuine, real, compassionate human beings even as they cling to those that have no compassion? 

Why would a person chose an "internet" family over a real flesh and blood family that loves them? 

How can people abandon their children? 

How can parents turn against their child due to personal preferences, sexual orientation, or religious beliefs? 

How can I hurt so deeply, feel so much, long to offer support and love..........yet year after year watch people walk away when the weather impacts my health and leaves me broken?

Why I Trust... NO ONE

Because I was the 8 year old little girl that wrapped the blankets all around me like a mummy, even tucking them under my feet and laid absolutely, perfectly still hoping if I wasn't heard I would be forgotten.

Because when those that loved me found out, they covered it up and did nothing about it.

Because even now they won't tell me who.

Because throughout all my years growing up I was taught that I never did anything right, I was never good enough, I should have been born a boy, and that nothing I did would ever be enough.

Because now, all these years later, they still feel the same way about me.

Because even after being molested as a child, I didn't get to willingly have sex the first time. My virginity was snatched away by a man named Stan, who only laughed at me when I sat crying and cleaning up the blood after.

Because he beat me AFTER I gave birth to his child, but never in any of the years we were together before.

Because he beat and raped me day after day after day while continously screaming that he loved me more than anyone else would.

Because he taught me that I never did anything right, I was never good enough, no one would ever love me apart from him, and that nothing I did would ever be enough.

Because after leaving him, I couldn't look into myself and see anything worthy or beautiful.

Because years later, when I had a third child with another man, he began to attack me physically. Never before our child, only after.

Because he still torments and threatens me, despite my having removed myself from his life a decade ago.

Because when I finally found someone I thought loved me, I married him, only to discover the night of my wedding that he truly did not love me but only wanted me to help him financially.

Because knowing that, I stayed hoping that he would learn to love me, and being devastated when he walked out after he got all that he wanted financially.

Because I waited all these years to tell someone all these things.

Because I waited all these years to tell someone many of my fears, my insecurities, my heartache, my pain.

Because I waited all these years to let someone in past all the barricades and the walls.

Because waited all these years for someone that understood. Someone that didn't think bad of me for those things.

Because I waited all these years for someone that didn't think less of me.

Because waited all these years for someone that  wanted to know all of it and think that I was good enough.

Because I  waited all these years for someone that would not betray me.

Because I waited all these years for someone that would not lie to me.

Because I waited all these years for someone that would not leave me.

Sometimes

Sometimes, your faith in a person can break you beyond anything you could ever imagine.

Sometimes, your faith in a person is so completely misplaced that when you are standing in the midst of the chaos you can't figure out how you ever believed it.

Sometimes, you find that not only was the faith you had in them misplaced, but others that are in their lives was misplaced as well.

Sometimes, you look at a person you've respected for most of your life, even if you rarely saw them, and listen to them tell you the lies they believe about you and feel pain because you can't understand how they could believe those lies when the person telling them has proven themselves to be dishonest repeatedly.

Sometimes you don't understand how someone could intentionally do something that hurts children, even when you beg them not to.

Sometimes, you think that you will NEVER have faith or trust in another human being.

Sometimes, that day is today.

Ice Packs, Bruising, Security

I woke up in the wee morning hours, just before daytime hours began.

My entire female region felt pummeled and beaten. I went to the bathroom and ran soothing warm water across the area. He asked what I was doing as he heard the water coming from the tub. He came into the bathroom at my reply and concern showed in his face. "What do you need?" I told him where the ice pack was and he quickly took it to fill it with ice. He helped me back into the bed and I gently placed the icepack between my legs.

He held me, comforted me, made sure I had everything I needed.

Yet, he was worried. He feared he had made a mistake. That he'd gone to far.

Yet, even though I had relinquished all my control to him, I always had the option to "tap out". I never even considered it. He had given me all that I longed for and more.

Yet, I also realized that it was not the time for me to reassure him, to comfort him, to let him know everything was OK. Somehow I perceived that by caring for me he felt strong. That he was showing me his love and devotion and that if I attempted to alter the moment, I would be taking control.

So, I stayed. Quiet. Submissive.

Hauntings

I walked into that store I abhor and never go to. Today, my craving for a DiGiorno Spicy Chicken pizza (that only that store sales) overcame my aversion to the store itself.

I got just to the main, massive aisle that runs behind all the registers and saw my aunt! I was so excited and as I turned to walk towards her I instantly smiled and thought of my usual greeting, "Hey beautiful!"

I don't know how many steps I took.

I don't think it was more than three or four.

When I realized "it", I stumbled.

I froze.

I looked again and she was still there!

But it couldn't be her.

It's not even been a year yet.

Almost.

But not quite.

I quickly ducked into the freezer aisle where only one older lady stood. I was crying and shaking.

Life just hasn't been the same without her in it. She was my rock, my backbone, the mother when my own abandoned me.

I miss her.

Cancer sucks.

Moments....

 I have come to the conclusion, most recently in my 37 years, that life is made up of moments and nothing more. We choose which of those moments to cling to. We ourselves determine which of those moments will mold us and direct us. Some may choose to grasp moments of negativity, forever letting those moments hold them hostage and sway their decisions. I was one of those people for many years.

Then, I became sick. I spent a year and half in bed with a nurse caring for my most intimate needs. In despair, all I could see was that I was no longer a mother to my children, a friend to others, a daughter to be proud of, a person of worth. My young children were growing up on their own. I was not able to guide them, direct them, supervise them. My heart was crushing within me. I was told I would not make it past 10 years. I was suffocating. Although my illness should have given me a better understanding of the immune system issues my son had fought through his life, I couldn't get past the moments I clung to of negativity.

The moment the doctor told me I would never be better.

The moment my friends abandoned me stating that they could not stand to see me in so much pain.

The moment my son and daughter stood by my bed crying because they wanted to cuddle but their touches brought me such immense pain I would scream out, despite my deepest resolve not to.

Then, I had a nurse. A beautiful woman by the name of Shirley. I doubt she even understands the impact she had on me. Mrs. Shirley refused to accept the doctors doom and gloom predictions. “Imperfect men”, she would tell me. “Only God knows everything”, she would say. For each negative thing I had to say about the state of my body, she had three more positive things to say. Through persistence and unconditional love, this woman pushed me to stand up for myself. She pushed me to tell the doctors “No More” when I felt the medications were creating worse damage. Once I refused the doctor's 21 prescriptions, she pushed me to work on moving my body. Again, I clung to moments.  

The moment that she held my elbows up so that I could wash my own hair.

The moment I sat upright an entire evening propped on pillows in my bed.

The moment my children learned if they ran a light finger along my arm, I could tolerate their touch.

Yet, I didn't realize yet that life is made up of moments. I sought a physical therapist that would help me walk again. When the therapist came to the house, I clung to that moment.

The moment I was told, “You are living in denial. You are never going to get better. You are never going to walk. Until you accept this, you will never be happy again.”

Yet again, Mrs. Shirley came to my rescue. I again grasped hold of moments.

The moment I sat at the dining room table, watching my very young children help Mrs. Shirley prepare a meal.

The moment I was able to put a bit of my food into my own mouth.

The moment I took my first step.

Yet still, I didn't realize that life is made up of moments. As I moved towards life, I still held onto so many negative moments. Highlights of my life, moments that should have been treasures, became my anchors. The moments of my past became what I clung to.

The moment I hiked that gorgeous waterfall.

The moment I drove a stick shift down a curvy road at sunrise.

The moment I swam across the lake and back.

The moment I saw my first paycheck as an order selector.

The moment I ran and played with my children on the playground.

The moment I spent my night dancing.

My life was held in moments.....of the past. I was left with my present suffocating still. My choices in life were based off the moments of my past. The moments I could no longer relive. Those moments held me hostage and resulted in bad decision after bad decision.

One of those decisions resulted in my becoming pregnant with my third child. In an attempt to provide my children with something I felt I no longer was able to give them, I dove into a relationship. A business deal that ended sourly. However, with the pregnancy my rheumatic diseases that had left me so terribly crippled went into remission. I still fought other chronic illnesses and pain, yet I was grasping such beautiful moments.

The moment I went camping for three months on the AT as a pregnant single mother of two.

The moment I hiked a beautiful waterfall.

The moment I drove a car down beautiful, curvy, mountain roads.

The moment I swam in the swirling waters at the base of the falls.

The moment I hiked a mountain to view the sunrise.

The moment I watched the sunset over the mountains from the fire tower.

I clung to these moments as my child grew within me. I battled some seriously difficult months where pain mounted from my other chronic health issues, yet eventually they would ebb to the edges of my being, allowing me to do much of what I enjoyed. I realized during this time that on the bad days, I must find my “happy thought”, my moment. On the bad days my moments became seemingly small. Moments that I could grab from where I laid in bed.

The moment a caterpillar crawled along my windowsill

The moment a humming bird nipped at the feeder

The moment the sun shone through the leaves

The moment my children's laughter would fill the morning.

However, I still did not realize that my life was made up of moments. Even in the midst of having to find a moment to cling to before I could start my day, I had no realization of that fact.

There were other moments I grasped and clung to that defined who I was and forever altered the decisions I would make.

The moment the doctor said, “Your son's (Pookie) diagnosis is High Functioning Autism”

The moment the doctor said, “Your son (Keegan) has Asperger Syndrome.”

The moment he said, “I'm leaving you, I'm never coming back, I never loved you. Your health problems and your kids special needs are too much for any husband to handle”

However, a year and a half ago, I came out of remission from my rheumatic diseases. I felt the change within me and, though I sought to deny it to myself, I knew what was happening. I pushed myself so very hard the last several weeks to provide my children with moments.

The moment my children and I visited Lake Lure

The moment I hiked the glorious mountain trails with water bottles and children in tow

The moment I lounged on the deck watching the kids play in the pool

The moment I walked the beach with my children looking for sea shells

The moment I swam in the ocean as the waves threatened to knock me over

I didn't realize that life was made up of moments. Yet, there were more to come.

The moment I heard, “I'm sorry to say, you were right. Your ANAs are elevated again. We need to discuss treatment”

The moment my closest friend said, “Refusal of treatment is the same as refusing to be a mother to your children”

The moment my mother said, “It doesn't matter if the medicines make you sick, you need to live as long as you can for your children.”

The moment my friends walked away because they couldn't stand to see me in pain

The moment my children's faces locked in fear as I told them the news of my coming out of remission

The moment the doctor said, “6 to 12 years is the average life expectancy for someone that doesn't respond to treatment. Without treatment, it may not be that”

The moment tears streamed down my face as I told my children, ages 6, 12, 15 that I was refusing treatment and what that meant.

I still didn't grasp that life is made up of moments. I could only, once again, cling to the moments of a past that no longer seem to relate to me.

The moment I paid the bills each month in full

The moment I would get a job and nothing stopped me from doing it

The moment my son's neurologist told me he had advanced so far due to my pushing for early intervention in his treatment.

The moment I had taken a mortgage out on a home

The moment I had taken my kids to a restaurant

The moment I took my children to a drive in movie

The moment our family went ice skating

The moment we had hiked and saw the baby deer with spots

I was once again living in the moments of the past, allowing it to hold me hostage to the present and the future. I started a “Bucket List'. Each day I added new things. I had no idea that there were so many experiences I wanted to have. Now that my days were numbered, I felt compelled to do so many things. I would have an experience and jot it down in my bucket list journal after the fact.

As the months passed by, I begin to notice that each thing I listed in my bucket list were moments. I slowly began to see that everything in life was made up of moments. That moments is what we had, what we grasped, what moved us. I realized that I wanted my life to be made up of moments each and every day. I set out to create moments. These moments weren't the same as those I had when I was healthier, yet they were moments to be treasured just the same. As I actively begin to create moments, I was able to reflect on moments from the past with joy. My moments today are different.

The moment I feel the water cascade over my body as I sit on the shower floor

The moment I lie my neck on the heating pad at night

The moment my child puts his arms around me, squeezing just the right amount not to cause pain

The moment I can open a bottle by myself

The moment I'm able to shave my legs

The moment I'm able to blow dry my hair

The moment I'm able to play trains with my son

The moment I'm able to sing along in the car with my children

The moment I'm able to stand in the rain as my children dance and play around me

The moment I'm able to look out my window and see the moon filter through the leaves

My moments are different, yet they are mine. They are beautiful in their own right.

Last night I had a moment that I wanted to share with you, a moment in some way that I already have shared with you. Last night I watched “The Intouchables”. Watching this movie was filled with moments for me.

The moment in the beginning of the film when I wondered, “How can you be so humorous about your condition?”

The moment when he handed him the phone, forgetting that he was bound by invisible chains in a prison that was not of his own making and realizing how delightful it is when someone sees you and not your disability.

The moment I realized that one of my boyfriend's greatest appeals is that he sees me and not my disability, even as he cares for my needs.

The moment when he spoke of pity and I understood so well.

The moment when he saw Paris at night and realized that life is about moments.

The moment when he had to stand up to his daughter, presumably feeling as inadequate as I do when I wonder if I'll be able to enforce anything I say to them.

The moment his phantom pains struck and he stood by his side to comfort him, just as my boyfriend has done for me when the pain is so unbearable that I wish someone would knock me unconscious.

The moment she walked up to his table

The moment he para-sailed, refusing to let his disabilities keep him from that which he loved and which broke his body to begin with.

The moment tears streamed down my face because I remembered that I am not alone, that others are here with me, sharing these moments.

Each day still adds more moments, some are saddening and have a tendency to want to weigh you down.

The moment he tells you that he just woke up and decided he didn't care about you anymore and wanted to break up.

The moment when you realize you are taking substantially less than something is valued at, simply because you must pay the bills that are due for disconnect.

The moment when you consider moving to a warmer climate because you can not tolerate the pain of the cold any longer.

Yet, in the midst of these moments, you must choose which ones to cling to. I choose to cling to other moments.

My children and I share a solid and inseparable bond.

I have friends that truly love and respect me.

Our most basic needs are always met somehow (food, clothing, shelter)

An angel gave my children a Christmas they otherwise would not have had.

Our family helps others.

I love myself.

Hope

I had hoped the day before yesterday was a fluke.

I had hoped that, by some miracle, it wasn't going to happen again.

Summer had been so good to me.

Why couldn't it just last forever?

Yet, this morning I woke with that old familiar pain. The pain that causes you to scream out loud and moan when moving, despite your best efforts not to. The pain that makes you want to plead with someone to knock you unconscious. The pain that radiates through all parts of your body. The pain that feels stabbing, burning, piercing, throbbing, pounding, radiating all at once. The pain that makes you laugh at the sad faces on a scale of 1 to 10, knowing that the majority of people out there have no idea what pain like this is like. The pain doctors say "most people" would not be able to handle. The pain that doctors willingly, with no questions ask, want to prescribe Oxycontin and IV drugs for. The pain that I can't take prescriptions for because the side effects render me useless as a mother.

I do this every year. I feel so much better through the warm and hot months that I start to secretly, inwardly hope that I've gotten better. I know that the doctors have told me there is no cure. I know that the doctors have told me that it will only get worse. I know that the doctors have given me a death sentence.

Yet, I can't help but hope. Hope that somehow, someway, it will get better. Hope that I won't end up spending most of winter in bed. Hope that I can run and jump and hike and bike.

Then, when cooler weather hits, and I wake unable to get out of bed without help, the feeling of defeat starts flitting around the edges. The anger starts to rise. The reality of how complicated life is as a single parent that can't hold down a "real" job. The unjustness and unfairness of it all. The envy that comes with seeing capable people with healthy bodies. I want to scream to God that it isn't fair.

Yet, I know that life isn't about fair. It isn't. Life is what it is and the only part we can change is how we approach it and deal with it.

Problem is...... financial responsibilities don't stand by and wait till summer comes back with warm weather and the bodies ability to function.

I am feeling very defeated today. Very tired. And above all else........ in PAIN.

2nd Day in Bed

It is days like this that I wish I had someone to talk to that understands. Someone that realizes I have pushed and pushed my body far past what it could handle. Someone that understands I am taxed beyond all means and that just because I looked "OK" a few days ago, doesn't mean I really was. 

I want to be able to walk out the door, knowing that I can fall back on all the experience I have in the work force and get a job easily. I MISS a real, printed on paper paycheck every week. I MISS busting my tale at work and then coming home to being a single mother. I MISS having the bills paid every month and not having to worry about which ones are not getting paid. I MISS being able to care for my body on my own, showering, washing hair, etc. I MISS being able to keep my house clean and all the chores done. 

I MISS BEING NORMAL

I try so very hard to look forward and focus on what I can do. Yet, when I am stuck in bed......when I have to have help to make it into the bathroom.....when someone else has to make my plate and help clean up the mess when I drop my food all over me......these are the times I think about all that I used to be able to. The time when I was a single mother, working and going to college. When my house stayed so clean you could eat off my floors without fear of germs (OK, so I was/am OCD).

I have enrolled in college. The entire degree consists of online courses. Only one will be work intensive, with multiple assignments and labs due weekly. I spoke with the department head for over an hour. I didn't tell him about my health issues. I didn't tell him that I'm choosing this field because I need a job where I can work from home, in case I can't get out of bed. I didn't tell him that I'm choosing this field because I feel I can only work part-time, around my bodies needs, and I hope this field will pay enough that I can support my family with part time work. I didn't tell him that I am unsure how I'm going to manage college, health issues, and be a success. 

I hate being stuck in bed. Regardless of everyone telling me it does not constitute failure on my part, the time spent away from my children and the state of my home makes me feel otherwise. 

I won't give up. I'll keep putting one foot in front of the other, metaphorically of course. I'll keep believing that somehow it'll all work out. I'll keep striving to be able to find a way to support my children and have income to provide for their needs. 

Someone asked me how I could believe in God after  all I've been through. 

Truth is..... if I didn't believe in Him, I'd have ended it all long ago. 

Chronic Illness & Dating

How exactly does dating with long term, chronic, invisible illnesses work? I figured that upon initially meeting someone, there would be no point in telling them about my health condition. We might not make it past 3 dates or ever see each other again, so what would it matter?

However, when does a person divulge information like that? How do you approach it? When does it become an issue that would be important to the other person?

I do unusually well during the summer months. This past winter, due to how warm the months were, has been my best winter yet. I didn't even have to dust off the wheelchair! I figure I could realistically date someone and not have to bring up my health issues until fall of this year.

Doesn't sound like me at all, does it? Me...who is always the one that speaks up for honesty and full disclosure. The one who is the first to say that by intentionally withholding information, a person is being dishonest. I'm the one who has no problem calling out others due to their giving half answers.

Yet, I fell prey to the very thing I abhor. I became dishonest by way of withholding information and only giving half answers. When asked why I didn't put the kids in public school and get a full time job, I spoke of my child's health issues and special needs as being the reason. That was honest and true, but I left out the fact that even if I did put them in public school, that it was highly unlikely my health would allow me to hold a full time job. I left out the part that to be protected by FMLA for time missed from work, I am required by law to reveal the health issues that I have. That by revealing these issues, I am left with no one willing to hire me. I left out the part that I have a fabulous full time job waiting on me, but that my health doesn't allow me to perform that job anymore. When asked why I didn't charge for all of the side jobs I do, I explained that I barter a lot. I didn't explain that most of what I had been seen doing recently was being done free because these were people who carried me through the winter. Even when asked about the dissolution of my marriage, I left out the strain that my having health issues had caused in our marriage (not excusing his actions by any means as we all know illegal drug use is not the way to deal with stress.....just making the point that chronic illness is difficult on a marriage).

There were so many other instances like this. Conversations we held that I didn't really say what I truly felt because that would lead to my having to explain why I felt that way. OR, I would say what I felt and thought, but it didn't make sense to the other person because they were never given the opportunity to see things from my perspective. Times where I was told that they thought I was holding back and not telling them something. Then, the times I would express that I did not understand what the other was trying to say, but because they did not understand my unique health issues and how it effects me mentally, they were not equipped to explain it to me in a way I would understand. We both walked away frustrated.

I feel....... hypocritical. How can I demand upfront honesty from each person I meet, yet give less in return?

At the same time, I long for what others have. I HATE the way people treat me different once they know. The look of pity that comes into their eyes. The way they start to offer to do everything for me, even when they've seen me do those things before. The way they no longer perceive me as a strong individual, but as a weak one instead. I HATE that. I want to be able to go out, have a good time, and there not be the thread of my illnesses running through each thing we do.

The people that I keep in my life on a close and personal basis, they are the ones who NEVER treat me different. They are the ones who see me the same after they found out, as they did before. They are the ones that have never once felt sorry for me. They are the same ones who will sit with me as I cry about how lonely life can be with chronic illnesses and that come together to help me make it through the cold winter months. Yet, despite that.....they never look at me any different. I have friends who, in the depths of winter, have had to help me dress and eat. They've had to brush my hair when I could not lift my arms. They've had to put my shoes on for me. They've had to take my children to appointments I couldn't drive them to. Yet, never once did they look at me with pity or as any less then the strong and independent woman that I am. These are my truest friends. These are the ones that will be by my side throughout life. (I love you Tabitha, Franny, Brandy, James and my family)

I would like to go on dates and men see me for who I really am. If I tell them in the very beginning, then they see my illness instead of me. If I wait till later, I have placed myself into a situation where I am no longer an honest person.

Where is the compromise? Is there even a compromise to be made? Even once you determine the “when” it should be divulged.....there is still the question of “how”. Maybe I should print out cards that have my name, number and a disclaimer that reads, “Dating is only allowed during warmer months” or “I go to Narnia in the winters” or maybe “Due to FibroFog and ChemoFog, I am due to completely lose my mind at any given time”. Or maybe I should just make a list of all the possible offensive things that I might do as a direct result of my health issues.

~ May ask you to repeat what you've just said....numerous times.

~ May stare at you with a blank look on my face and not understand anything you've said.

~ May substitute random words in a sentence that make no sense at all.

~ May have no recollection or memory of conversations we have had.

~ May have no recollection or memory of dates we've been on.

~ May get frustrated when I am trying my best to understand what you are saying, but it won't make sense to me.

~ May have difficulty following through on multi-step directions.

~ May lose everything, even when it is in the same spot I always put it

~ May become emotional when I have things to accomplish and am unable to do them.

~ May appear to neglect important things (such as cleaning house). In reality I am basing my day on how many spoons I have left (read The Spoon Theory available online)

~ May lose ability to spell, sometimes even the most basic of words.

I could go on and on. There are so many things that change when I have a flare coming on. The peak of the flare can be mild to bad. This one, I spent yesterday and the day before in bed. Today I've made it to the chair in my bedroom and am able to type. YAY! I actually think I might be able to shower today, though the legs are gonna have to stay hairy! ;-)

Overall, I have the best life anyone could ask for. I have incredible children and an amazing daugther that steps up to bat when I'm down and out. She has cared for her brothers, cleaned the house, cooked meals, and done all that I needed done the last few days. She has not whined once, nor complained. She has checked on me, brought me meds and applied pain patches. I have friends that have checked on me throughout the day via text. I have a friend that came at the very last minute to take me to the doc. She drove an amazingly long distance to get me there and did so at the very last minute (we had an hour to be there from the time I asked her to take me). I know that had my flare persisted through the week, that friends would offer to come cook or take the kids where they needed to go.

I have the best friends, a lovely home, and family (not necessarily blood) that would take a bullet for me if need be. I have benefited so much from these illnesses. The two years I spent in bed taught me a lot about what really matters in life. I learned to quit trying to live up to others' expectations of me. I learned that it really doesn't matter what others think. I learned that I didn't need the praise and commendation for a job well done I had craved and depended on before I got sick. I learned that there is such a thing as unconditional love and that my children show it to me even when I'm at my worse. I learned that doctors really don't know best. I learned that people who have no idea what you are going through will ALWAYS have an opinion about it, and it's best to just ignore it and walk on. I have learned that there is no room for drama in my life, and the easiest way to deal with it is to block it from your life at the first sign of it. I have learned that there are some people who can see past the illness and see who you really are, and those are the people you keep around. I've learned that there is great joy in giving and doing for others, and that is what life is about. I've learned that money doesn't matter, that insurance companies couldn't care less about what you need, and that the more material possessions you own....the more you have to clean!

Life is a learning adventure. I guess this is just part of it I have yet to learn about. As always, I'd love to hear feedback. I know that many of you who read this blog (so sorry I haven't posted much lately) have chronic illness or love someone that does. I'd love to hear your thoughts.

Remember, each morning when you wake, no matter how severe your pain, find that one beautiful thing. No matter how small or how great, find ONE beautiful thing. Cling to that as your happy thought. Mine today are the memories of the wind blowing through the leaves yesterday. Each time I woke, that is the first thing I saw from my windows. It'll be my happy thought today! ;-)  

I Did It Again

After weeks of battling disabling pain, fatigue, headaches, nausea and more, I had started to feel better. My husband and I spent two nights away at a cottage where I slept the majority of the time. Feeling more refreshed then the preceding weeks, I decided to follow up the mini-vacation with a trip to Biltmore Estates. Overall, I accomplished more in one day then I'd been able to do in months. I alternated between my hip locking on me, and the pain in my head causing me to take many more breaks then I expected. I spent the majority of the time sprawled out in the grass on the estate as my five year old ran, flipped, and climbed walls (literally). When we stopped for dinner on the way home, I told my husband that I was in immense pain, but that it felt good to know the pain was a result of having done something. I told him that if I was going to hurt, I'd rather it be from accomplishing something rather then from laying around in bed. 

The next morning I woke determined to push myself harder then ever before. If I could hang with Biltmore, then I could at least catch up on some housework and start packing for our upcoming move. I tackled the kitchen. I pushed through the pain, the fatigue and the headache. I swept behind appliances, boxed up items to give away, and bleached everything that could be bleached. I even managed to drive a short distance down the road (although the pain almost prevented me from making it back home). 

I went to sleep last night thinking of how much I could get accomplished this week if I kept up at the same pace. I thought about how I'd always let the fatigue and pain stop me, but this time would be different. I allowed myself to dream of all the fun things I'd be able to do with the children with my new found strength and vigor. Dreams of hiking trips, fishing adventures, and field trips filled my mind as I feel into the embraces of sleep. 

Then, today came. I woke with a fatigue so severe I couldn't get out of bed. After a few more hours of sleep, I managed to make it to the couch where I gave the older two children their daily chore and schoolwork assignments. I checked a couple emails and messages, and went back to the couch. The fatigue and pain today has been unbearable. At noon I went to lie down with my youngest  during his nap/rest time. I slept for two hours only to wake feeling more fatigued and in pain then when I first laid down. I dragged myself to the couch and gazed upon the chores that I had dreamed of accomplishing today. I begin to berate myself for once again having gotten my hopes up. 

Don't I know that each time I dream of accomplishing "normal" things, I am deeply disappointed? Haven't I learned yet that the unbearable pain and fatigue always come back and stop me? How did I not know that if I "over-did" it, I'd pay for it? Why did I think this time would be different? 

Rather then sit and bemoan my misfortune, I decided to blog. To get it all out in print and release the despair I feel at this moment. 

I had a   physician tell me long ago that I was living in denial. That I was not accepting the limitations of my physical body and that until I did, I would remain unhappy and unable to feel contentment. She told me that I needed to quit thinking about the things I had done and enjoyed before, and find the "new me". How ironic that the things she tells me I am refusing to accept, are the same types of things that I feel makes my child so unique and special. 

So, here I am today. Once again let down from having allowed myself to dream of a "normal" life. Yet, I find comfort in the fact that I don't have to completely accept the "new me". I know that God has promised to one day "wipe every tear from their eyes. There will be no more death or mourning or crying or pain." I think of the lyrics to one of my favorite songs where Chris Tomlin sings, "I will rise, when He calls my name, no more sorrow, no more pain." I know that God will strengthen me to accomplish His will today, no more and no less. I know that God "gives strength to the weary and increases the power to the weak......those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

While visiting the cottage on my husband's and my mini-vacation, I saw a quote in a book. It was a quote that I used to have posted in my bedroom as a child, in my locker at school, and in my cubicle at work. It merely stated, "Life is 10% how you make it, and 90% how you take it." 

My broken body today is out of my control. I can only do so much.....eating healthy, getting enough sleep, taking vitamins, stretching, etc.....the rest is out of my control. Yet, there is One who is in control and who provides me with all I need. I tend to lose sight of all God has given me and dwell on what it appears I have lost in my life. Yet, I have so much to be thankful and grateful for. God continues to bless me each and every day. Today I am even thankful that my pain and fatigue has caused me to stop and realign my thinking once more towards my heavenly Father.

No More Pain

 All words in blue are hyperlinks. Click on them to be taken to a webpage that will give you more information.  
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I am sooo very tired. Exhausted. All I want is to curl up and sleep. Yet, my monster screams “NOOOOO!!!” at the top of its lungs.

It started yesterday. My three year old was tired and cranky and asked me to pick him up. I held him for 5 minutes, no more. Within half an hour my lower back was severely hurting. I took a hot shower to try and ease the spasms and went to bed. It was very late and sleep did come. I woke this morning with sharp spasms and a deep-rooted pain in my back. Today was due to be a busy day. We had to go out of town to pick up our two older children (an hour drive), then to the wholesale club for grocery shopping (couldn’t be postponed any longer) and then back home (another hour). I KNEW I should utilize my wheelchair but then it seemed like it would be such a pain to get it loaded up and ready to go. So, off we went without it.

The shopping trip in the wholesale club is what did me in. There was no wheelchair sitting at the door waiting like the other times I visited. So, I had to walk it. I behaved. I didn’t even attempt to push the shopping cart but did hold on to it, and shelves, as I walked for support. Yet, by the time we hit the checkout lane, I was in tears. The pain was quite unbelievable. I didn’t have any medication with me and still had quite a ride ahead of me.

By the time I got home, all I wanted was to go to bed. But, groceries had to be put away and dinner prepared. We only had an hour before leaving for church and I knew that I’d have to provide some guidance. We headed out the door to go to church. Church is what gets me through my weeks. I wouldn’t care if I had to be wheeled in on a hospital bed in a hospital gown, I’d still make it to my weekly service. When there, I can feel God’s presence and know that He is always with me.  So, off to church we went. I made it through part of the service before having to head out to the foyer. There are very soft chairs in the foyer and thankfully there is a live feed to the flat panel television that hangs on the wall. I was still able to hear the service!

I left church feeling about the same as I did before I went. Not worse, which is good. I came home and after making sure the kids were all tucked in, I stood up to head to the shower. That’s when the spasms and pain really kicked in! Honestly, it felt like labor contractions. They stole my breath and held me in a vice grip. I made it to the shower, in the hopes that the steaming water would ease the spasms. Instead, I ended up having to have help getting out of the shower. I was dried off, dressed and put to bed. I laid there for quite some time. 

I am sooo tired. Exhausted! Yet, the pain in my back is keeping me wide-awake. I have put on three pain patches but don’t want to resort to the narcotics or muscle-relaxers. They increase the symptoms of my Fibro Fog and make it so difficult to remember things. Then, they seem to worsen my Periodic Limb Movement Disorder, which makes it almost counter productive to take them at night. I honestly can’t tell you if the benefits of narcotics and muscle-relaxers outweigh the side effects. Here lately though, the relief from pain has been so minimal that it’s not even worth it. Debating whether or not to take them put it past midnight. Now if I take them I’ll never make it up in the morning.

So, back and forth I go. Wondering if, even though I’ve had a partial hysterectomy, if there is any way I could be experiencing labor pains. Realizing that I would GLADLY take labor pains to this any day (and considering I had 9 ½ pound babies, this is no small statement). Wondering if I should just take the pain meds and pay the cost tomorrow in mental fogginess, exhaustion, and that achy all over feeling. Wondering exactly what would be the harm in using one extra pain patch (not that I’d do it). Wondering why, Why, WHY it has to hurt so bad? Wondering how a week ago tomorrow I managed to carry a child on my back in an emergency situation but today can’t even stand without help.

Tonight at church we sang a song that had they lyrics, “no more pain”. (I Will Rise) It’s not the first time we’ve sang it. Each time I hear it, when we get to that particular lyric, tears come to my eyes. No more pain. This, my God promises! He promises me a future with no more pain. NONE! Can you imagine? What would I do if I had no pain?

I would hug my children so tight, never wincing or grimacing. I would dance as if I’d never danced before. I would run through fields of flowers. I would swim in the ocean. I would hike the tallest mountain. I would tickle and wrestle my children just to hear their laughs and screams! I would sleep outside, on the earth, on a blanket of pine needles and moss to see the blanket of stars above me. I would run until my heart pounded, dance until my hair stuck to me, laugh until……..wait….laughing CAN’T hurt!!

Today Sucks

Today is a bad day. Last night my joints killed me and I didn't sleep. Today I woke in immense pain and depended primarily on my electric wheelchair to get me from room to room. My pt came and worked on me for quite a bit (Thank God for her) but not long after she left her boss called and let me know that my insurance (NC Medicaid) may not pay for anymore visits. This after only 3 sessions. Yet, Medicaid is willing to pay for me to have numerous prescriptions including but not limited to narcotics, opitates, muscle relaxers and more! I'm distraught at this moment as I was really hoping the physical therapy could keep me mobile through the cooler months.

You see, this also is the face of fibro and MCTD.

I Got To Shave My Legs !!!!

I've mentioned previously that with fibro, you have to find beauty in different places then before. Often, that beauty is found for you. 

Shaving my legs is a big deal for me. I have to carefully weigh the pros and cons of doing so. Will it require so much energy that afterward I won't be able to care for the children? Will it cause so much pain afterward that I won't be able to sleep? Do I have enough spoons left for the day to do so? (shaving legs takes about 3 spoons) 

Today I had a lot to consider. First, my legs were starting to look a lot like a man's. Although I could care less, we do live in a society that dictates that most women shave their legs. Second, tonight is our financial class and I needed to be able to make it there. Third, I still have to dress, dry my hair, and prepare dinner. 

Today has been a good day though. The head pain that has been plaguing me on and off for the last few weeks is today, just a nagging pain. I was able to stretch out alot of the knots I woke with this morning and figured a long period of time in a hot shower would work out the rest. Dinner is going to be easy tonight as it's BarBQ Chicken, baked potatoes, and corn on the cob. Once my roommate gets home, he'll take over making sure the children are ready to go and all I will need to handle is getting myself out the door. Overall, it seemed like a good day to do it. 

*sigh......as I type the bottom finally let out and it's now pouring rain. Rain and I disagree. Cold and I disagree. Put them both together and we practically hate each other. We'll see how it goes. I'm off to start dinner. I usually try to start it 3 hours before it's time to eat since I now have to take so many breaks in between and it takes twice as long to do certain tasks. 

But you know....even if the rain gets me down, even if I miss the class tonight, even if I end up to exhausted or in to much pain to do anything...............

MY LEGS ARE CLEAN SHAVEN!!!! WHOO HOO!!! 

For 7 years I've been facing this monster disease that seeks to destroy me. I move through the summer months able to easily hide the pain, knowing that when cooler weather comes, all will see my fragility. Each fall and winter, those who met me in the summer look at me in amazement as I shrivel....shrunken and held captive in the prison that is my own body. Time and time again, I hear the question asked, "How do you do it?" 
I'm never really sure what I'm being asked. How do I manage to get out of bed each morning when the pain is so severe that I can barely take breathe into my lungs? How do I handle 3 kids, one with special needs, when I often need help dressing myself? How do I let total strangers into my home to bathe me? How do I tolerate only eating the same food day after day cause everything else makes me sick? How do I make it on only a couple hours sleep each night? How do I handle the stares of others when I'm out and about in my electric wheelchair? How do I deal with losing all my hobbies and activities that once filled my life? How do I accept that I have these illnesses and that there is really no treatment that helps and nothing anywhere near a cure? 
The lists of questions that a person could potentially mean goes on and on. Yet, the answer to all of these is one and the same.
I do it the same way the woman who lost her breast to cancer takes her first trip to the beach afterward. I do it the same way a mother takes her autistic child grocery shopping knowing that he'll most likely meltdown from the sensory stimulation. I do it the same way the man goes to work each day to support his family despite his back being bent from years of hard physical labor. I do it the same way the child with ragged out hand me downs goes to school on picture day. I do it the same way the adult child sits by their dying parents bedside. I do it the same way a parent sits in the waiting room of the hospital when their child is undergoing surgery. I do it the same way a pre-teen with scars along their torso changes clothes for gym class. I do it the same way a cancer patient goes in to get their chemo treatment. 
I think that Helen Keller said it best when she said, "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved".
Ultimately though, I know, deep down inside where all knowing is absolute, that God has carried me through the past 7 years, just as He did many times before that. I have bad days like everyone else. I have days where I want to stay in bed and bury my head and cry myself into oblivion. I have days where I curse the doctors, specialists, pharmaceuticals companies, and researchers for not finding a treatment that works. I have days where I cry out to God and ask Him "Why? Why? Why?" But, each day I go to bed knowing that I am fortunate enough to have a tomorrow and that God is right there with me each step of the way. 
For those of you struggling with the pain, remember that you are not alone. We are united as one through our pain and our struggles. We understand each other as no one else does. 
For those of you who love someone struggling with the pain, take a moment to follow the link on this page to "The Spoon Theory". Take the time to support your loved one even though you don't understand. Don't expect us to be able to explain something that we don't understand or even know from day to day. Most importantly, thank you for loving us despite our conditions.