Dead Silence.... Afraid to Speak?

After having my acromegaly injection refill refused by my endo and being left to suffer with symptoms for weeks as I fought to get it back, I had so much anger built up in me. How dare someone just take away a med that had given me a quality of life back, that had allowed me to be able to function in this world and be somewhat of a good mom again!! I was furious beyond words and anxiously awaited the day my endo appointment fell on so I could tear into her and let her have it. I had spent days playing it out in my head exactly what I was going to say to her. With each conversation about it, with each pain and each headache and every moment of fatigue, my anger and stress kept adding to the mountain of rage I had built within me and I cursed her name with joy. I envisioned myself  in her office refusing to sit down, standing tall ,arms crossed demanding answers for her incompetence and lack of compassion. I envisioned the nurse coming in to ask if all what alright and what the yelling was about. I even envisioned myself taking a gansta position with head tilted arms out to the sides, all up in her grill! You name it, I envisioned it for that appointment!! I even made myself a written list of points to be sure to make in case I lost my thoughts in that anticipated moment of rage and stress release....
And then it happened, "Sheryl, room 4 please" .. I politely greeted the nurse as I followed her and then my tension grew as I walked closer to the exam room. I could feel my fists tightening and my jaw clenching (well the best I could) ...my lips pursed tightly as to hold in my words and save them all for the doctor. The nurse said the doctor would be in shortly.. so I sat down to wait, trying to conserve my energy for what was coming. Boy was I ready to lay into her! Arms crossed, knee bouncing rapidly with anxiety, heart pounding...I waited. and waited.. and waited... Finally, the knock.. that stupid little warning knock to let me know that it was on! It was a knock but I think my mind heard more of a boxing bell ring tone to it. I stood up and took my stance. Here we go, c'mon Sherry, don't kill her... just scare her. ............ and then it happened, I saw her face. My mouth opened, I quickly pulled my fist out and bam!! I let her have it ....my hand to shake that is.. Ugh... ok, Sherry, now tell her everything you had to say, get your list , start talking..don't let her say a word!! Here goes.. and bam! " Good morning Doctor, nice to see you again" .............Lord what is wrong with me! I said nothing, nothing. I was pleasant. I was calm. I was patient. Everything I had planned to say and do all went right out the window as soon as she walked in. What it is that people find so intimidating about doctors? What do I find so intimidating about THIS doctor? She is kind and young and beautiful and polite and mild mannered and knowledgeable and truthful. Why can't she be a hag? Why can I not just speak my mind when it comes to complaints? Could it be because this woman holds my life in her hands? Do I really want to bite the hand that feeds me per say? She is it.. she is the one that is able to help me. I have been through four endos, all of whom made my life miserable. I fought for two years to get to this one because she is among the best, most knowledgeable with acromegaly. I have no fear of asking her questions and asking her to repeat things or explain things, but I can not bring myself to be aggressive towards her in any manner. I did not even MENTION to her about not refilling my injection script! Not one damn word!!! I was proud of myself for keeping my composure but not proud for not at least telling her how she made me feel for those three weeks... how sick I was. I didn't even ask her why. I only know what the nurses were telling me. I need to not be so passive I suppose. I just keep going back to the thought that... what happens if I piss off the doctor? Does my care remain the same... or does the care diminish because I have made myself not as worthy of compassion and great care as the other patients that behave accordingly. Care should be the same regardless of who I am or how I behave, but is that really how it works? I always feel like I need to keep my negative opinions or remarks to myself. I do not want to compromise my health care in any way. Truth be told, I NEED the doctors..they do not need me. I am a replaceable patient, but not all my doctors are able to be replaced when it comes to being knowledgeable on rare diseases. At least for now, my meds are back and my care is moving forward again... but boy, she better not EVER keep my med from me again or I will, I will just... I will probably just go and greet her with kindness all over again. Ugh....

Tears for All Occassions

I cry when I am sad
I cry when I am angry
I cry when I am happy
I cry when I am scared
I cry when I am lonely
I cry when I am hurting

These days I find myself crying for all the above reasons which are normal things that would trigger someone to cry.... but I also find myself crying at times when there really isn't anything to cry about. Nothing obvious anyway. I realize that I have a disease that affect the bodies hormones and when those hormones are imbalanced there is a great chance that my body will release that stress through tears. I think maybe more times than not, when I cry out of the blue, it is because I have just reached my mental/emotional limit of what my body can handle... my tear threshold if you will. People like me who are sick most of their lives are self taught to be strong... and maybe taught by the world around us too. "Don't cry, be strong, You can do this, No more tears"..... my favorite "don't cry, you will upset everyone". HA! I am so sorry if my tears bother you. I will try very hard in the future to hold my stress in and just bite the bullet when I feel like someone is pounding a chisel through my left temple..... as to not upset anyone else, of course! I hope I am the only one that gets told that but I have a feeling that I am not! I try to never tell anyone to not cry. Instead I tell them to cry and just let it all out. Tears are natural stress reducers which is why we often feel so much better after  a good cry. Maybe my body requires me to cry at random and awkward times and places because it can no longer hold the physical and mental stress it gets put through every day. That would kinda make sense because most of the time I really have no idea why I am suddenly crying. Once I start crying...after  a bit, my mind takes over and starts coming up with reasons why I should be crying. The mind is so powerful.... just as easy as it can pick us up and pull us through a situation, it can suck us in and hold us down.
I often cry at night after my kids have gone to bed and I have some alone time. For me it is purely related to releasing stress.. I have made it through the day, I have nothing more to do so I can just let my body and mind go. I no longer need to be strong or hold back the pain because my day is done. Some of those tears are because I have made it through another day and I am grateful.
Holidays are the worst for me. No matter how happy the occasion is for me I find myself fighting back tears and drinking lots of water. I learned years ago that drinking water is a great way to hold the tears in! ... not that I am advocating for holding emotions in. Just for me, during Christmas season especially, I am a total mess! Everything makes me cry nowadays during this season.. carols, movies, Santa Claus, bell ringers, wrapped gifts.. you name it, it makes me tear up! ...and I can not control it. I try hard to fight off depression now during every holiday. This has been over the last five years maybe. It has come to the point where I do not want to go anywhere or do anything most holidays. I never used to be like this.
 On top of my own tear sessions... I have become an empath of sorts and I feel the pain of my friends.. when they are hurting, I hurt too. I am so in tune with my body and this disease that when someone with acro tells me something they are experiencing physically or emotionally, I know exactly what that feels like and my mind and body will take me to that place. It is an awkward feeling, but it does help to support someone when you know exactly how they feel! I have acro friends who experience the same empathy.
Crying releases stress
Crying cleanses the soul
Crying is a sign of being alive
Crying is ok

Uncertainties

Well, I opened up my blog tonight and I am not sure what I even really want to write about. I saw this picture earlier and that is what prompted me to want to write. When I saw this pic I immediately thought of a group of patients with acromegaly working together to figure out the "puzzle" and the specialist off to the side holding the missing piece of the puzzle.. that missing piece that holds our future, our cure, our peace. I thought to myself, "just connect the damn piece and get it over with". I mean, the piece is right there and it is so close, yet, so far away. Too far away to grasp but close enough to try and reach out to. Why can't life just be that easy. Why can't a cure just be that easy? Why? With all the medical advancements in this world they have not found anything. They can grow a human ear on a pig's butt but they can not control a gland the size of a pea?? I get so angry and so frustrated sometimes because something so tiny can wreak such big havoc on our systems when it is out of whack.
A friend called me today excited to tell me that she is now eight years cancer free. The doctors have turned her remission into cure because of this special eight year mark. She was so excited and could barely contain herself. I was truly honestly happy for her yet I sat there silently, quickly falling into some sort of a trance, briefly pondering the thought of my remission, my day to celebrate and would that day ever come? I guess my silence somehow triggered her because she quickly apologized and said she shouldn't have called me with such excitement. I assured her it was fine and that I was truly happy for her...and that I just got lost in thought for  a moment. We laughed and shared some inspiring words with each other...... It was then, she felt the need to mutter the words to me
"Sherry, I wish you had cancer instead of that disease you have... at least that way you would have a chance at a better life, a chance at being cured". I was dumbfounded. Mind you, she did not mean this in a cruel way even though it sorta came out that way.  I did not take offense but it did make me wonder. I spent many years of my younger life terrified I would get cancer because there is so much of it in my family line and now here is someone wishing it was cancer instead of Acromegaly for me. Was I fearing the wrong disease? I spent so much time worrying about the big C when the big A was already in motion within me. Bad health is just scary, period. I would never wish this disease on anyone.. or any disease for that matter. Disease is life altering.
My thoughts about acromegaly have been all over the place lately much like the writing today. I guess at times things become overwhelming for me and my brain becomes overloaded with thoughts..so many thoughts it can no longer sort through them and process them properly. I have so many unanswered questions.