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.

My Support Band

Last year the Acromegaly Community came out with bracelets we could purchase to help support the community. One side says Acromegaly Community and the other side says "Cure Loneliness". Lovely shade of blue and it fits me! It really fit me! That in itself was exciting for me. I truly thought it was something I would have to hook to my keychain. Most jewelry does not fit me because of the size of my fingers and hands. Anyway, back to my story...
My bracelets arrived in the mail that day. I immediately and proudly put it on. Grinning from ear to ear the entire time. You would have thought it was Christmas morning! Later that evening I ended up in the ER. I went by myself, as usual. As I was sitting there waiting an older gentleman came and sat in the chair right next to me. I was waiting probably 45 minutes or so when all the sudden he says "Is it working?". This man has not said one word to me all evening and now he asks me if it is working? I wasn't sure how to respond because he caught me off guard. I slowly said..excuse me? He said again "Is it working?". My reply "Is what working???" He points to the bracelet and asks me if I am curing lonliness... I smiled, My response to him "You are talking to me aren't you?" He smiled back and proceeded to ask me about Acromegaly. We spoke for quite a while until I was called back. He was very curious about acro and I was very eager to share :o)
I love my bracelet ♥

Killing Myself with Kindness...

.... in the form of chocolate...and sweet rolls...and Oreos...and donuts and all the others crap I know damn well I should not be eating!!!!!!!! The carb attacks are getting worse the higher my IGF1 levels climb. I am beside myself with anger. I am angry at myself over something that I really do not have complete control over. My second endo once told me that it is impossible for people with Acro to lose weight. I proved her wrong. I did not lose buckets of fat but I did lose about 15 pounds. My first endo told me that the more I try to lose the weight, the more my body will work against me because my body thinks it needs more to grow since my stupid pituitary tumor keeps secreting large amounts of growth hormones! Sadly, that does make sense. I could always tell when my kids were having growth spurts because they would eat like there was no tomorrow. Here I am at 41 years old....going through growth spurts and eating everything in sight at times. Not only does it cause me problems physically, it also causes me problems emotionally. I get so angry at myself. I used to have great self control. Now I sit down, make a diet plan, an exercise plan etc... and I just can not follow through with it. The harder I try, the more I fail. Failure never used to be an option for me.
I know it is not a physical hunger that I have. It is the inbalance of hormones...I can eat a meal and feel stuffed beyond belief yet, I immediately crave chocolate as soon as I stop eating. Mentally I know exactly what I should be doing but my body rebels against me. As hard as I try the cravings consume my every thought and literally drive me to insanity. I can not distract myself from wanting the effin chocolate! I have even been craving and eating food I hate...like parmesan cheese, coconut even peanut butter which I am allergic too and could put me in the ER. The other night I ate ice cream because it had chocolate in it! I knew damn well that I can not eat dairy products and it would make me deathly ill but I could just not stop myself. I sat there and cried with each bite I took and then spent the night in the bathroom with a swollen belly, diarrhea and vomiting....all because my body demanded the chocolate. Lord, what the hell is happening to me? Who is this person? This is not me. Sherry is strong and has will power and loves to eat healthy. I am so disappointed in myself even though I am not really fully to blame. The inner struggle is creating depression and anxiety within me.I pray this will stop soon. The last time my IGF1 levels were completely uncontrolled, I weighed over 300 punds. I can not go back to that time of my life.
I hate this disease.
I hate not having control.
I hate the mental struggle with food.
Sugar is my enemy...Acromegaly must be Christian because it is teaching me to love thy enemy!! I consume sugar foods and it makes me feel worse, causes more pain and more swelling. Makes my sugars out of whack (remember I am diabetic). The more sugar I consume, the more infections I get. I am fighting three right now thanks to my week long binge because I attempted to quit all sugar for four days. This is almost like having a split personality, trying to deal with this disease. It is Sherry against Acro-Sherry. I am losing right now but I will win. This disease can not have me.
The sugary snack foods have been used up and what is left has been hidden by my children with strict instructions not to give it to me even if I throw a tantrum! They like this power, but that's ok. Someone needs to have some control around here!
With the help of my fellow Acro cravers I will beat this too. Together we are stronger ♥

I am Beautiful...............

I just can not seem to convince anyone else of the male species to believe me! I have two sides to me, I will touch on the sad side first that seems to surface on occasion. Part of me is sad because I have spent my life trying to find someone to love me unconditionally, just the way I am. Sure I was in a relationship with my children's father for 16 years but it was not a relationship built nor witheld by love and compassion. Even during all those years I longed for someone to love me. I still do. Why is there not anyone out there that wants to be with me. I have friends that love me to death and they see the true beauty I behold but there is always the friendship line that is somehow forbidden to be crossed. On the nights when I am lonely and cry, my mind breaks free from my reasoning and wanders into troubled waters. All the negativity comes out...Who will ever want me? I am not very attractive, deformed a bit actually. I am always sick even though I try very hard to hide that...some days it is very obvious. I have a crazy ex and teenagers. Not many men want to jump into a relationship with kids, especially teens! I don't have sex. I have mood swings. I go through alot of treatments. Sometimes I get mad for no apparent reasons and I can get very irritable at times. There are days I feel like dying because the pain and sickness gets so bad. I am overweight and underpaid.Who wants this sort of package deal? Would I want all of this in a man? Am I destined to be the old woman that everyone at church delivers meals to on holidays and sends occasional "thinking of you" cards so she doesn't die of lonliness? When this side of me surfaces, It does not matter how much my friends tell me how beautiful I am and how amazing I am and how any man would be happy to have me.......because truth is, Actions speak louder than words and this woman is not getting any action! I just want to be loved.

Now, the other side of me which is more prevalent and I enjoy immensely is the side of reason. I am beautiful! I know I am. It is not my fault if men do not see that. I love who I am and how I am. Why on Earth would I want a man to "put up with me"? I want a man to SHARE my life, my glorious life, not take care of me. I have proven time and time again that I am very capable of caring for my family and supporting us 100%. I have amazing children, a great personality, I try to be funny :O) and as far as looks go....I am cute! I do not have to be a rail thin runway model with perfect cheekbones to be beautiful. I am not looking for love now. I am sitting back and letting love find me....letting God choose for me because I obviously suck at it! I may end up that old woman but I will not be lonely because I have amazing friends and I will not allow myself to suffer.