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....

Even Pillars Crumble

I am a pillar.

 Definition of pillar; someone or thing that is considered a foundation or support.

I do not want to be a pillar today.

I am crumbling.

When a pillar crumbles it loses its strength, its stability.

It looses the ability to hold itself up.

Everything it holds up comes down with it.

I do not want to be a pillar today.

I do not want to be responsible for what I am supporting.

I can not watch myself crumble to the ground.

Nor see everything I hold up crash down upon me.

I am still standing today, but I am crumbling.

I am a pillar of strength

I am human.

I crumble.

I cry.

I rebuild.

I love to be the one whom people turn to when they are in need of a kind word, a hug, encouragement. People say they look to me because I am a pillar of strength. A strong woman.

They say, "I wish I were half as strong as you" "I have never met anyone as strong as you" "Your strength is an inspiration" "I don't know how you have survived what you have and still smile".

 My strength came at a cost...trials, tribulations.

 I worked hard for my strength. I am proud of my strength.....but not today.

Today, I do not want to be strong

I do not want to hold anything up

I want to crumble

I am weak

It has taken me many many years to learn that it is ok to fall to my knees and be weak, as long as I remember to get back up tomorrow. Life will not end because I have a moment or a day or a week of crumbling. My family will survive while I cry. My friends will survive while I get angry and scream and pound my fist on the ground to which I have crumbled. Because they are my friends and my family, they know me. They know I am a pillar of strength and I will be back tomorrow or the day after or in a week.

Pillars crumble.

They become stressed and things chip away from the surface causing them to become weak.

Pillars become weak if we do not care for them

Pillars crumble with harsh blows

Pillars fall completely when attacked, when thrown a bomb

I am a pillar crumbling

Tonight I will repair it

I will fill in the holes. I will strengthen the foundation

It is ok to be a pillar of strength. It is also ok to crumble sometimes. The world does not stop because we crumble. Our true friends and family do not walk away because we crumble. They may step back to avoid being hit by our falling debri, but they do not leave. They stand by and wait, ready to help us repair and rebuild. Even pillars need support. Never will you see a sole pillar standing.

I am a pillar

I am strong

I am happy

I am weak

I cry

I build myself up

Life tears me down

I rebuild

I am a pillar once again



Energy, Come back!!!

I think one of the hardest things for me to deal with on a daily basis if the fatigue that Acromegaly causes me. There is no fatigue quite like it really. Originally I was told that my fatigue was from my severe sleep apnea so I went through all the proper testing and I was set up with a Cpap machine that forces air into my lungs allowing me to breathe through the night without my airflow and heart stopping. The first few days were great! All the sudden I had energy and felt refreshed in the morning. Wow what a difference! .......but that was short lived. Granted the fatigue is much better but it is far from gone. Every night before I go to bed I make a list of everything I need to get done the following day. I have every intention of completing my list when I fall asleep at night...but I know in my heart that it just is not going to happen.
The wall of fatigue strikes fast and hard..usually without much warning. I can feel great and be working on a project or walking through the store when it hits. There is no way to stop it, no way to control it.Just have to pray there is a chair nearby....sitting on the floor at Walmart is frowned upon. Doctors ask me to explain the fatigue to them and I tell them that it is a difficult thing to describe. It is as if, all the sudden, somebody pulls a plug and I can literally feel the energy draining from my system or as if someone has placed lead weights on my limbs.My body becomes limp, my mind starts to slow down and everything takes all my energy. Even my head seems to be too heavy to hold up. I dont know if people have noticed or not but I tend to rest my chin on my hand, elbow on table or chair after sitting for a bit or I make a fist and shove it up under my chin, letting it rest on my chest...this is simply to help hold my head up. People just think I am bored or uninterested in what is happening around me. No, I am just trying to save my head from crashing down on to the table or snapping my spine when my head gives out and falls backwards. I have hit my head on many a table and the backs of a few church pews...how embarrassing was that!
In my bathroom, the way it is set up..there is a wall next to the toilet and the vanity mirror in front of it. The wall and I have become good friends. Many a time the fatigue was so bad that I would sit down to use the bathroom and I would find myself leaning on the wall with all my weight and looking into the mirror asking myself, "what is wrong with you? Look at you, how pitiful you look right now". I was right, I was a sad sight site to see. Before I knew it..half an hour would go by. Another hour lost. Ugh.. I find this horribe fatigue robbing me of countless hours of my life. I am not happy about it but, what can I do really. Nobody seems to know the cause nor the cure. Tried caffeine, that made me sick eventually. Tried cool showers to wake me up more, that gave me colds. Even tried blasting my radio thinking the music would get me moving! Not a chance. The fatigue is relentless. It consumes every part of me. How many times have I layed in my bed counting the lines on the ceiling or watching the fan spin or..... listening to the silence of my room wondering if I fall asleep, will I ever wake up. Seems like I am so tired sometimes that I could just drift into a coma. Truth be told, there were times I had wished I did. The neighbors are used to seeing me sitting in my van for  awhile when I come home. After errands, I am too tired to even walk myself to the front door. I sit and watch my kids run up the ramp and into the house. Wondering if anyone will realize I am not there.....again.
People who do not live with this fatigue are quick to judge and quick to advise....Just get off your butt and do something, drink lots of coffee, If you were more active you would not feel like that, you're just depressed, If you would go to bed at a decent hour.., you are overreacting, if you would eat better.. quit being lazy............ AAAAhhhhhhhh I want to cry and scream and tell them they don't understand how this fatigue has a mind of it's own, how it takes me prisoner and how it possesses super powers that drain me in the blink of an eye!!! I dont want to lay around numb to the world around me, I dont want to be so tired that I can not feed my family and play with my kids. I do not want to be labeled lazy and depressed.I dont want to continuously break plans because I just can't get myself up and moving! I just want to be able to function every day. I want to wake up in the morning and know that I will not see that bed again until nighttime.

Kidney Stones:Stabbing Pain is an Understatement!

 Aaaaargh!!! Kidney stones....I cringe at the thought! My first experience with kidney stones was when I was 15 years old. I remember spending five days in severe pain, trying to sit,lay and stand in every position possible and not finding any comfort. My mother had tried to convince me that it was PMS...two days later, the flu...two more days later I was being rushed to the ER. She thought I was dying.I thought I was dying too! I was given morphine, lots of morphine :)  and a medication that helped to break up the stones. Too late for surgery so I had to let them just pass. Despite the enormous amount of pain,the stones were quite tiny. Boy was I happy when that was over!

Over the years I would pass very small stones which, allthough painful, passed pretty easy. Then in my eighth month of pregnancy, the pains began...nurses thought I had gone into labor. After two days in they hospital they figured out it was stones. They had infected my kidney. Doctor pushed antibiotics.....not much else he could do with me being so close to giving birth. For one month I had to endure a constant dull throbbing pain. Two weeks after my son was delievered via c-section, I woke from a dead sleep screaming and doubled over in pain. It was the worst pain I have ever felt in my life. I have nightmares about those stones to this day! I am rushed to the urinologist to find out that the stones were trying to pass and became lodged in the ureter and the opening to the kidneys. My side was swelling because I could no longer even pass urine. I was almost yelling at the doctor to get them out when the nurse took me back. Good news...he could remove them! ....Quickly followed by the bad news that there is no facility in my area that can do the surgery I needed. I nearly fainted! Doctor said not to worry, they could do the surgery in two weeks. Really?? Two weeks????? I kept thinking that I would be dead by 6 o'clock! My fears were settled a bit when he said they were going to immediately, right then, put stint tubes in so the urine could flow and the pain would stop. Oh Thank the Lord, Praise God! Hallelujah!! NOT....you will soon read why. Doctor left out a little pertinent information. He made it sound so simple. I should have known when they strapped my arms and legs down in a gyno type stirrup chair and popped valium in my mouth that thi would not go easy. Nurse says don't worry. Nurse says wont hardly feel it. Nurse says just hold my hand and it will be over before you know it. Let me start by saying I dislocated her ring finger! Doctor failed to tell me that that stint tubes are pushed through the urethra and used to shove the stones back into the kidney! I was screaming on the table, begging the doctor to stop and squeezing the crap out of the nurses hand. It seemed like it took forever. Mind you, I have a very high tolerance for pain but there is no pain that even comes close to passing a kidney stone.....or having them shoved back into your kidney! At some point I passed out. When I woke up the severe pain was gone and just an uncomfortable feeling lingered. I remember being so pissed I would not talk to anyone in the office. In the waiting room my parents told me they could hear me screaming. I am not convinced they gave me any valium but I was glad the intense pain was gone for now.

Two weeks later I am on my way to Cottonwood to have the stint tubes taken out and have laser surgery to destroy the stones. I was told a little about how it worked. I knew it was done with lasers so no cutting and I was assured and re-assured and re-assured a few more times that I would be completely knocked out. What I was NOT told was the process leading up to the laser. One of the most embarrassing days of my life. I layed down in pre-op...removed all my clothes, put on an ugly gown three sizes too small,had an IV put it. I am never given tranquilizers because surgery never bothers me...no anxiety.I wish I would have taken them. Nurses come for me (male nurses). They roll me into the procedure room and all I kept thinking was that those are the two biggest nurses I have ever seen in my life! Looked more like body builders. They ask me to stand up...so I do thinking that they are transferring me to another bed........*sigh*...no bed, oh no, not a bed. They remove my arms from my ugly gown and just let it hang from my neck. Ok, this is awkward. Next thing I know they are picking me up butt naked to set me down into this contraception that looks like some sort of weird sex sling or dominatrix torture device.It is just straps everywhere holding your limbs and head up. Everything is exposed...EVERYTHING. I tried very hard not to make any eye contact at this point. Now, here I am just gently swinging back and forth with my ugly gown barely covering the top and my rear end hanging out the bottom getting cold from the air conditioning below. Talk about feeling vulnerable. I was ready to just die in that thing.I kept wondering why on Earth they could not have just knocked me out before all that part. The nurse proceeds to tell me that the crane I am hanging in will take me over and lower me into a pool of water where the lasers will be used. I ask why the water? Nurse says, so the lasers do not burn a hole right through me. Have I mentioned that this facility had no bedside manners and they are very good at embarrassing you and scaring you to death??

Well, all went well in the end...the stones were crushed down to dust and were passed without feeling it. Unfortunately, the lab lost the few stone samples I managed to catch so I do not know what is causing mine. They can analize stones and tell you what part of your diet is contributing to them. I now religiously add 3 tablespoons of lemon juice to my diet every day to keep my kidneys clean and to break down any stones starting and, allthough I still get stones, they stay small enough to pass without feeling like someone is shoving razor blades through me.