Braving new beginnings.

Today I came to the painful realization that some things will never change. I've been holding my breath for so long hoping the things the I've come so accustomed to would magically change for the good. I have been so wrong for so long. I have grown breathless. I can no longer keep up this internal battle.

Which means, I have to stop waiting and finally start living. I've felt trapped for so so long.

Trapped in a place that causes hurt and pain.

Trapped in a town that feels broken.

Trapped between suffering and stubbornness.

Trapped between what my heart wants to do and what my body says I can do.

Trapped between a desire to spread my wings - but not ever knowing if I can do that. Waiting ever patiently for circumstances to change and eagerly anticipating that days arrival. Yet, it hasn't come. The day isn't even in sight. Only dreams of what could be exist in this tiny town. 

So here I am, a bit broken. Beat up. Bent. Now stricken with new wounds just when I thought I was healing. I guess this is the process though right? Its not an easy one. Its not a 'one click' and you're all cleaned kind of thing. As a generally impatient kind of person this kind of "it takes time" healing process is killing me.  And any new adversity adds to my general feeling of being trapped. How do I escape this? I've always made plans. I was almost an over planner for a teenager. But it felt good, I set goals and achieved them in the order I so planned. It felt so satisfying to be in such control of my life. And now, there is no control. Well, maybe it only seems that way.

So that is it, there is my answer. I need to get control again of this beautiful thing called life. I have been kicked down but I am fighting to get back up again. I can't wait for the clouds to lift to start living. I need to live despite the clouds. Figure out new plans. Make new goals. Dream again, and maybe, even accomplish some of those dreams. I don't always have to be trapped.  Sometimes it just takes a painful reminder that I am not actually trapped. Its perspective. Its all in how much you want to make changes. Its all how you view it. Its all within you.  It is all within me.  

Everyday is a new beginning. A clean slate. A fresh start. A chance to heal the wounds that left us the day before completely broken. So today I'm starting over.

I'm still breathing, so I can do this.  And so can you.

If you are feeling broken down and battered you are not alone. But you can do this. One foot in front of the other. Keep breathing. Slow steady steps. One day at a time. Remember it won't be dark forever. 

From within the womb.

I am seeing my life change before my eyes. I've been given love on a level that shouldn't be ignored. The love that overflows from my daughters, husband, and parents is not something I could ever take for granted. Love from friends showing their support and kindness builds me up and I am eternally grateful for what they have shared with me.
But life is changing. Life on a level that is hard to put into words, but I will try.
Life that begins as a child impatiently waiting for that one particular right of passage, the sign of having finally become a woman. The thought that life could be carried inside mine was always something that filled me with such contentment. I felt whole. I could be a mother I thought. Of course this wouldn't be fulfilled until many years later but it was something I could not wait to have happen to me. And when it did with our first child, she truly made me the person I always longed to be, a mother. And for a while, a damn good mother. I was pleased with what I did with her, how hard I loved her and how I would empty my soul on her behalf.Sickness set in not long after she was born. But having a newborn made me move past whatever pain I was experiencing, because at the end of the day I saw this angelic-like-china-doll baby. She was mine, all mine and I couldn't believe it.



Life grew even richer when her sister joined the world. I feared the kind of mother I would be with another little one in tow. Juggling two is sometimes an emotional battle I still fight daily. Do I give too much attention to one and not the other? Am I kind enough to one, or too tough on the other? Up and down, around and around, life spins each day with one question leading to another. Am I a good mother to two children? I am trying, but at times I think failing. Sickness has sucked my spirit up and at times I fear, devoured it. But there are sunny days where I find out that my spirit of love is still there and fighting to get through. However, despite knowing my limitations full and well, occasional dreams of the past come bubbling forward. Dreams I have tried to extinguish on many occasions. But knowing the possibility was still there made it bearable.
And now that possibility is coming to an end.

How does a woman mourn the loss of what makes her unique? Of what makes her special amongst men who walk the earth with all their strong manliness? How does she mourn the loss that life could be carried within her? One day she bares a belly-full with another heart beating inside her and the next there's a real little person to hold onto that is breathing, crying, living, continuing the circle of life.

But then in a matter of minutes that possibility is removed and placed into a sterile silver pan just like that. Sent off for examination by a stranger and then tossed into a hazardous waste container leading to incineration. My womb. The place that cherished my babies before I even could, now destroyed. Why am I being so dramatic? After all, I already know with our current circumstances as they are,  to add another child to our family would be an unwise, unrealistic and probably irresponsible decision to make. My heart is already so full of love now, blessings and beautiful days. In being 100% real, I actually don't want another child. In fact I am straight up terrified of that happening, knowing what my limitations are right now.  But what if that feeling changed in a few years? Chance gone.
 

However, I think it's more than that. It's the strange disregard for the fist sized organ that made me a mother in the first place. It's the ripping it out and tossing it aside without so much of even a thank you. So for me...... while the Dr works to remove a part of me that now causes pain,  I'm certain as I count backwards from ten while they place the mask over my face, tears of appreciation for the 77 weeks (collectively) of precious protection it gave my babies will flow from my eyes.  

So when it's all said & done and March 1st at 11am has come and gone, I know that I am not losing what makes me a woman. I'm still me.  I am simply recreating myself. Finding myself to freedom. Finding a way to not live in fear of unnecessary pain. Not that pain will be gone from my life,  but pain that *maybe* in one area of my body, I don't have to have anymore. Sitting here not doing anything won't fix the problem. So I have to roll the dice. I may win,  I may even lose. But if I don't try I will never know. And as far as dreams go I've had the most important ones fulfilled, which was to become a mother to two beautifully different and wonderfully whimsical daughters. And for that,  I am eternally grateful.

Dear Dr. D:

   This letter is on behalf of the thousands of patients that have come to you in the slightest hope that you can give them a small piece of normalcy again. 

We came to you in tears, in pain and in disappointment. Our bodies have let us down. They've taken us hostage in our own skin. Our bodies have waged war against our every fibers. So yes, we came to you in tears that we could not control. We reached out our hand to you in hopes you would take it and lead us to a more peaceful place. No, we didn't expect miracles. And we didn't expect to be cured. But we wanted answers and something as simple as a plan.

We heard good things about you, we held our breath as we decided to take another leap of faith and schedule yet another appointment with yet another specialist.

But what you may have misunderstood about ME (us) is that I actually have things I would rather be doing. I would rather be spending time at home bonding with my children, rather than sitting in a cold sterile waiting room with the news playing in the background. Even snuggling at home with my dogs while reading a good book is on my *would rather do list* - then sit here waiting for you. As I wait for you my nerves take over. Your reviews are great. You have a few who say you were less than understanding and you barely gave them the time of day, but I chalk that up to that being the person who can never be pleased. It won't be like that for me. I'm an intelligent bright patient and kind person. I've come prepared and I've done my homework. Certainly the you will appreciate that and will be moved to help.  You will see me as the person that I am - a mother - a wife - a friend to someone- someone's daughter - you will see me as a *person* this time. Not as another medical chart, another icd-9 code, or a potentially psychotic woman who has too much time on her hands, spends way to much time googling and needs to be treated with antipsychotics and sent for a psychiatric evaluation. (Because clearly I love coming up with new ways to feel worse- spend less time with my family- and let my husband down yet another night. ------- That was sarcasm incase you weren't sure)

No, this time will be different. I will tell you my endless amount of struggles and symptoms for the last however many years, and you will be quick to give me a diagnosis. I will take a deep sigh of relief and brace myself for the next stage of

my life: slow but hopefully steady RECOVERY....

Oooops sorry!! That is how my fantasy always goes.  Now back to reality........

Reality becomes the bitter sting I am quite use to. Reality is quick to remind me that doctors have become jaded in the world we live in. Overworked, utterly exhausted, the corporations that pay them have unrealistic expectations of how many patients the doctor can see in a day,  and patients that were once people have now become figures of sales and dollar signs as pharmaceutical reps come and go with their pitch and take of the doctor's time that an ailing patient actually needs.

The doctor has learned to rely only on what is seen on those mysterious papers set before him. Nothing in your blood work, then you must be fine. "I don't see any of the issues you are telling me. You look healthy. You're staying busy." Why are you wasting my time? - I often wonder if the doctor in his or her checked out stage is actually thinking that about me, because all too many times have I been left to feel that way. Leaving the doctor's office trying desperately to hold back tears because Lord FORBID you give them another reason to say it is all in your head. Because the pain I feel, the ache, the stabbing, the burning, the extreme exhaustion that is crippling my life is NOT in my head. It's not something I can "positively talk myself out of" - but thanks for the suggestion.  What you can't see because I look fine to you is how hard I am trying to feel normal. I wear makeup because I feel like a garbage can on the inside. I smile and am cheery to you not because I don't hurt or am not exhausted and dying for help, but because I am hopeful and holding onto the last bit of normalcy that I have left. And one more thing..... I am also strong. I have struggled for endless years chronically fighting something. So the pain that 7 years ago I would have rated as a 10 is now only a 4. So if I seem to be downplaying how I feel, it is because I have become use to feeling sickly. I'm so use to feeling sick that I no longer recognize the feeling of "coming down" with something. Because I always feel like I am coming down with something, weak, exhausted and riddled with pain. Always.

However, I am grateful and fortunate beyond words that after 7 years of being given the wrong diagnosis, having muscle relaxers thrown at me & calling that treatment,  I finally found a doctor that believes me when I say I feel bad.  He doesn't want to see the pictures I've taken to prove the things I go through. He says what I say is enough. He wants me better. He wants to help. He is treating me with auto-immune disease modifying drugs and when necessary --- gasp--- even steroids. Steroids when I'm not even showing inflammation in my blood work. Why? Because inflammation doesn't always show up in the test results. And just because it doesn't show up-- doesn't mean it doesn't exist.

  Just like the wind. We feel it, we hear it - but we cannot see it. We just feel the pain that cannot always be seen.

So to the doctor out there that saw me and the thousands of others, the doctor who made up their mind about me because I appeared to be "just fine", or maybe just more work than you would like, please read this with an open mind, as a kindly reminder that we the patient are not just numbers, insurance issues, or someone else's problem. We are human. Real and ready to be helped.