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.

Oh Sheryl, Where for Art Thou?

I have been feeling great physically lately and my cognitive skills seem to be creeping back slowly as my IGF1 levels are dropping. I thought to myself that now would be a good time to try and get a part time job..you know, work as long as I can ,while I can because I learned that tomorrows are never promised. I have things that need to be done around my house and with my van and well, let's face it, Social Security disability payments barely pay the mortgage. Anyway, I was offered a job at the behavioral clinic that I attend but in order to qualify I had to take a training class. I thought great! I was so excited to finally be a part of something "normal" to show myself and my kids and friends that I was so much better and my life was moving forward splendidly. That acro was no longer controlling me...... Classes began yesterday....day one FAIL with a capital F

 Those of us with mental health issues understand the word "triggers" all too well. My entire day of class was filled with mental and physical triggers. Being crammed into a very small basement room with 20 strangers and just one small window too high to see out of was not exactly the training class I anticipated. It was crowded and I could not move. My space was invaded big time by those on each side of me. I desperately tried for hours to reposition my butt on the hard chair thinking that would somehow alleviate the excruciating pain radiating through my hip and lower back. I could not stand nor stretch nor scream. Getting up to stretch or leave the room would have required at least half the class standing up and moving out with me. Attention that I did not want placed on me. My anxiety was already escalating just being there. The room was very dimly lit so reading in my book was impossible. The constant squinting gave me a headache within a short time. I tried very hard to listen and focus but as the day continued the acro fog came rolling in and set the room in a haze. I continuously rocked back and forth and side to side in attempt to see the teacher so I could read his lips..something that I seemed to have picked up over the years. Hearing loss and acro fog sound like seashells on my ears moving to the beat of the ringing. I see everyone's mouths moving but I can no longer comprehend. I feel lightheaded and want to cry.

The first few hours I was able to tolerate class. Not sure how exactly but I did. During the ten minute break I could not seem to allow myself out of the folding chair that had become my torture chamber for the day. My torture and my security, a bittersweet relationship. I was afraid others would beat me back to their seats and I would have to burden everyone by moving to let me back in. I suppose this is a touch of paranoia, something else the disease has gifted me. I never have liked it's gifts. Once break was over, class began and the first thing the teacher said was that we would begin role playing. My jaw dropped and my heart sunk into my stomach. I didn't "hear" anything else that was said until it was my turn.My anxiety was thru the roof!  I heard my name from the teacher and then my partner giving me her situation. All I could do was look at the teacher, jaw opened wide and eyes welling. He must have seen the terror in my eyes because he answered for me. I have not felt that stupid and embarrassed in a very long time. It was at that very moment that I realized that Acromegaly still had reigns on me and it was tugging hard. I felt like I couldn't breathe, my chest was pounding and I desperately drank water hoping it would hold back my tears and keep my panic down....the attack was coming and I was not sure how long I could control it. Why the hell can I not control this? Why can I not just be like everyone else in class? Why can I not just open my mouth and say what I needed to? I know the answers. I know the terminology. Please don't laugh at me. Please don't think I am a mental case. .... All these things kept racing through my mind. I also thought of how disappointed I was in myself and how much I hated illnesses. Triggers make it easy to become quickly depressed and anxious and to let your mind wander with completely false thoughts.

During the lunch break I made sure to walk out of the room so I could re-focus, stretch my throbbing hip and try to explain myself to the teacher...ha! explain myself...Oh so many times I have tried to "explain myself" to the non-acro life forms. I wasn't anticipating any understanding but he was actually very nice about it. Now that I think about it, he is trained to deal with people like me who just lose it for no clear reason. He has the job I am training for. Is that ironic? So I shed a few tears, stopped on occasion to catch my breathe and think about what the most important things he should know about me during the few moments I had with him. Can't remember exactly what I said but it involved,brain tumor, acro fog, anxiety and panic. The one thing I clearly remember and I love him for...he never said "well, you look good". He gave me a high five, told me he was proud of me for my accomplishments and how far I have come.

Back to my torturous chair for the last two hour stretch in the dungeon. The teacher was accommodating and made sure to give me a reassuring smile on occasion. I could not make myself completely comfortable physically nor mentally that afternoon as I was still terrified that there would be more role playing. I don't think my mind and heart could have lasted through another attack that day. After class, I got in my van and as I started to drive, I began to shake and then the tears came, crocodile tears....a steady stream flowing out directly from my very soul. My heart had been broken that day. I expected to be "normal" that day. I wanted my first class to be great. I wanted to be great. Was I asking too much? anticipating too much? The acromonster may have reared his ugly head yesterday once again but he can not scare me away from something I really want to do. I want this. I need this. I need to be able to feel as normal as I can. I know I will never be who I used to be and that's ok. I will make a better me.

 

Finding Some of Me Again

I think for the first time in years I am beginning to feel a little bit like the old me. The me I once knew before I was faced with this whirlwind of Acro. Thanks greatly in part to my dietary changes my levels have finally dropped some after enduring six years of the monthly elephant dart. They are still not normal but they are definitely closer to normal than they were. I seem to have a glow about me because people I know and even some I don't have been telling me lately I look different in a good way and that I have a whole new peace about me. Positive reinforcements like that make me want to try even harder. I am not sure tho if the "peace" is because my body is reacting to the changes and becoming stronger and healthier or because I have mentally found "peace" with this disease... or maybe even some of both. I know my physical and even mental limitations and I am pretty sure over the last few years I have allowed myself to succumb to this disease too many times. I can't. I can't. I can't. I am tired of hearing myself say I can't or I shouldn't or I better not. I think I have become so used to having this disease and dealing with symptoms that I have subconsciously started using it as an excuse. There is so much more that I can do than what I have allowed myself to do. Just last month I walked 16.5 miles in one night whereas just weeks before that I told my son I could not walk the trail with him because of my ankles and my knees and because I get tired and blah blah blah....excuses! Excuses that have allowed me to gain weight and lose muscle and just sit around getting sicker. Being proactive is not just taking my meds and seeing the doctors regularly. It is also giving my body the best possible chance to fight disease by exercising and eating right. Three months ago I began a new diet. I stopped drinking all diet soda and eating all fast food. I also stopped consuming most foods with chemicals and preservatives. Now I am working on no bread nor tortillas. Little by little I am removing everything a body should not have. Our bodies were not made to digest or use foreign substances. I have to give my body what it needs to work properly! I am doing that now and it is responding remarkably! I wish I would have thought to or been pushed to do this when I was much younger. Focusing on today tho..today and every day in my future. No more using my diseases and conditions as excuses. I can do everything...I might just need to modify the way in which I do it!

Where Have I Gone?

Not even sure where to begin tonight. I have so much running through my mind since I came home from Tanya's, a fellow acromegalic's,memorial service. I was there for a few days and at night I was alone in the guest room...no tv, no radio, no computer...just me and a whirlwind of thoughts. I began to pray for Tanya and her family as I held her teddy bear and looked at reminders of her in the room like the star she held at her birthday party and a photo on the dresser and a small trinket with palm trees that I just knew had to have belonged to her. Soon my prayers turned into tears, my tears into sobs, my sobs into anger. I thought I was angry at death and doctors and careless people and stupid shots but now that I am looking back. I was angry at myself. I AM angry at myself. Angry that I am not doing everything in my power to change my path in life, to change my destiny. This disease...all my diseases have manipulated me into believing that there are things I can not do.I have found myself making excuses instead of making progress. This is what this disease does, it sneaks in through the back door of your brain and wreaks havoc until you forget who you are and what you should be doing. A friend of Karen's asked me this weekend if I like to dance...I said yes, but immediately followed that with,I can not dance any more. What??? Who the hell said that? It surely was not me because I can dance, I can move, I can sway back and forth. Music was always a big part of my life...when did that change? Who made me stop tapping my feet and swinging my arms? Not the doctors, not the disease...me, I did. I stopped the music. Lord, what is happening to me?? I have become my worst enemy, my worst caregiver. I am the one constantly telling my friends to find the positives, keep moving, do something, stay active with your body and mind...yet, where has my self pep talk gone? I feel like I am caught in the eye of the tornado and I am just watching my life spin around me...too fast for me to jump in and afraid of what I can not see ahead. This has to change. It took me an entire lifetime to decide that I do love myself and that I am valuable and my life means something. I can not let that go. Where is the unconditionally love for myself that I give to everyone else, even strangers? I am realizing that, as positive as I am and as hard as I work for everyone else, I do not give myself the same. I can not complain any longer about the aches and pains or the acrofog or the weight gain and such unless I am doing everything in MY power to change it. It is going to take me some time but I intend on treating myself like everyone else I love...with love and respect and dignity and only making decisions that I know will benefit my life. Every part of my diet and health situation can be approved upon. My mental health needs an overhaul too. This disease changes people but we can control some of that change. That night I made a vow to myself to make all the changes I needed to in my life NOW while I can, while I am able to, while I still have life in me. I thanked Tanya that night for listening to me babble. I knew in my heart she was sitting there with me and understood what I was going through in that moment. Life is precious....we have to make it worth living, make it last as long as we can

The Death of a Friend, an Awakening of Sorts

 

On January 14th the world lost an angel on Earth. I lost a dear friend. The Acromegaly Community lost a hero. Tanya Angus lost her battle with Acromegaly when her heart gave out....the very same heart she used to reach out to the world to spread awareness for the rare disease that controlled her life as an adult: Acromegaly. She will be missed dearly. Her smile is engraved in my memory, her inspirational words engraved in my heart.
When I first heard of Tanya's passing I was heartbroken and in shock...the shock has worn off but my heart still hurts. I have not cried so much in years. As much as I loved Tanya and admired her, not all the tears were for her. I began to realize that I also cried for those with acromegaly that are still fighting and suffering, wondering how this news would affect them. Were they in tears too? Would their depression take hold of them and draw them further in? I didn't sleep at all the first night after the news. The second night I finally fell asleep around 4:30 am...no longer had I fallen asleep, I was awakened by a shortlived dream of me seeing bright lights at the end of a tunnel and hearing Tanya call my name. Scared me so much I ripped off my cpap mask and literally jumped right out of my bed ,shaking and once again crying. I was so exhausted that day and I don't think that it was until that night that I realized why I was not sleeping. Like Tanya, I had a TIA in my sleep about three years ago. I woke up to half of my face drooping and by the time I got to the Emergency Room my right side began to feel heavier and heavier. I was terrified. How could this happen? How could I not feel a mini stroke happening? Well that was back before my severe sleep apnea was diagnosed. Without my cpap machine, I stop breathing and my heart stops for brief periods. When I had that TIA, it took me months before I was able to sleep through the night again. I was afraid to sleep for fear that I would have another mini stroke and maybe not be so lucky the second time. Hearing that Tanya died after a TIA during the night had brought back the memories that I had tried so hard to bury in my mind. I was afraid to sleep again. The common sense side of me said, I am not Tanya. Each person is different. Each case is different, but of course my fears had already got the best of me. It was not until Karen, Tanya's mom and I spoke that I was able to calm my fears a bit, enough for me to start to sleep again. I still didn't sleep through the night but I got enough sleep to be able to function for the day. Tanya is the first person I personally know to pass away who had acromegaly.....I never want to go through that again. I miss her and think of her every day. Sadly, her death has been a rude awakening to the reality of Acromegaly for many of us. Uncontrolled acro can lead to major complications. I received several messages from friends with acro this past week expressing their fears, similar to mine. This is our reality. These are things we think about. Other people go to bed planning their next day. I go to bed praying for another day. Nothing is guaranteed in anyone's life but for those with rare diseases and severe medical conditions, we tend to see things differently from the rest of the world. We have different things to worry about.
Rest in Peace Tanya.... thank you for everything you have done for me and for everyone else with acromegaly. Love you....