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.

$17,605.63................

The amount it cost to try and control my Acromegaly every month. One injection. $17,605.63

Never in a million years would I have imagined that a huge 19 gauge needle would be the highlight of my month.It is my medicinal savior. I hate it yet I love it too.It gives me life and takes my life. I hate the thought of having a large needle piercing my flesh every month....having to depend on something so painful to keep me alive.I hate the drive to the next town wondering who will be there this time to inject me. Will she know how to do it or am I going to have to explain for the thousandth time what it is, how it works and how to inject it?Is it going to go in smooth or will I cringe in pain as I feel the alcohol slipping into my new pucture wound? I used to use a cream to numb the skin before injecting but I stopped after a while. I just didn't care any more. No need to numb my skin because I myself had become numb. It was almost as if it was my way of telling Acro to go to hell, I am stronger than you. Nothing you do will break me. I can be stubborn like that sometimes.Even the I.V. nurses argue over who HAS to give me the shot. I actually like it in a sick twisted way.Maybe it is the few moments of sympathy for the girl who gets the 19 gauge needle that no one else gets.I don't know.Just another stupid highlight of my month.

When I first started on injections I was on another med called Octretide which basically does the same thing as the one I have now but with that one, I had to inject myself every eight hours around the clock, 3 times a day. I did that for over a year and I hated every moment of it.That was the first time ever I had to inject myself. It didn't bother me really, but being a cutter a while back, I was experienced in self mutilation....a shot was easy. Oh how I hated having to take the vials with me to inject on time....packing the cooler, gathering the supplies. Seems like my injection time was always at the most inconvenient times. I remember sitting in my car at the park,watching my kids play as I injected. I cried that day.The med had so many side effects. I never felt well...constant diarrhea, swelling, nausea, bloating. I can not remember the amount of times I asked myself if the shots were worth it.A few times,I threw them into the trash. I just could not do it anymore. I was happy actually, when I went in to anaflactic shock from the medicine. My body could not handle it any more. Felt like I was going to die in the ER that day. I couldn't breathe or stop shaking and oddly enough,all I could think of was how relieved I was to have a reason not to keep injecting myself with those damn things.

The injection I am on now, Somatuline Depot, is much easier on my body...very few side effects.But, it also has stopped working or not working hard enough. My IGF-1 levels have begun to rise once again and I am already on the highest dose. Lord help me. This medicine HAS to work for me.

Just a note on the cost of this med. I am so very grateful that my insurances cover the cost of my med but it does make me feel very guilty every time the statements from the hospital come. I can't help but to think of all the other things the government could do with that money.Just another reminder of how this disease causes destruction.

Now,despite the pain and discomfort, I enjoy my Somatuline injection every month. I can feel it everywhere the day the med wears out of my system which is always a few weeks too soon. All the breakthrough symptoms start flooding back into my system and functioning normally is difficult...pain and swelling come back ten-fold.Once I get my injection, I feel better within an hour. Doctors say it is not possible for the med to work that quickly. I ask them "Have you ever had Acromegaly and injected yourself with this med?". I think not. I know my body...maybe it is mental,maybe just the thought of having the med in my system creates the "feel good" until the med does it's job. I don't know really but I do know I feel better soon after and that's good enough for me.

Sending out HUGE hugs and many thanks to all those who are faced with the task of injecting those of us who can not do it ourselves. I appreciate you. I know it is not any easy task to inject someone you love, knowing that it is going to hurt them in the moment and the fact that you do it whether you like it or not shows how much you truly care about us.

Breakthrough Symptoms....horrible reminders.

 This is me just two days ago feeling good, messing around with the webcam,feeling cute! Medication flowing through my body doing what it is meant to do...controlling the symptoms of Acromegaly.

.........And here is me (below) upon waking this morning ...medication no longer flowing through my body, at least, not enough to do any good. Symptoms rushing back into my body once again declaring war. Mornings like this I do not want to fight. I just want to lay quietly in bed and pray for the next two weeks to go by quickly. Two weeks until my injection...two weeks until my sanity returns...two weeks of medical hell. Worth the wait? Absolutely! Functioning properly without the medication in my system is not impossible but also not pleasant in any way. The huge 19 gauge needle that I look so forward to having pierced into my flesh is a Godsend, an opportunity to feel a little more "normal". The needle can not come quick enough. Sometimes I wonder if the medication does not last because my body has built a resistance to it. Seems to me it used to last. With each passing month now it appears to last a day less. I am scared. This has to work. the other injections sent me into anaflactic shock. That day is embedded in my memory as I thought it was my last.

   This treatment messes with my mind. Every month... for two weeks after the shot I am feeling great. I feel like I am beating this stupid horrific disease. Even have moments where I forget I have acro...very short brief moments,but moments none-the-less. I will take whatever tiny bit of normalcy I can grab on to. And then it happens, I wake up. Swollen beyond belief, sores on my tongue,dry blood trickling down the corner of my mouth, head pounding,cranial pressure, feeling like a truck ran me over in my sleep..then backed up and ran me over again for good measure. Joints are swollen, depression creeping back,heart racing,struggling just to hold my head up. Just want to lay in my bed and hear nothing, see nothing, be nothing.

  Within a few days my body will again adjust to the "new" me and I will function somewhat but not how I need to. I can hear the comments coming like a wall of water in a Tsunami. The comments will hit me hard and add to my suffering. "dont you have anything better to do than lay around all day"...I have a million things I would rather do. "Why aren't you cooking dinner?" ..because the sight of food nauseates me right now and my hands can not hold the pans. "Just take some Ibuprofen and do what you need to do" ...Ibuprofen is for minor aches and pains, not feelings of being crushed in a compactor or pounded in the head with a mallet. "Call the doctor, make an appointment"... so he can tell me I have Acro? so he can say just take pain pills and wait it out. Thanks for the insight everyone everyone but I just want to be left alone to deal with the reminders that I have Acromegaly and this is what it is. Physical torture, mental torture. I use the word suffer so others can understand the extent of what I deal with every day but I am not suffering. People can either choose to suffer or choose to fight. I am a fighter. I try not to let my life be miserable but some times these breakthrough days are enough to do in even the strongest souls.

 









Dear Doctor..

Dear Doctor,

   You have been seeing me for over a year now and I think it is about time that you get to know me. First, let me begin by telling you that my name is Sheryl Colstock, not acromegalic patient. I am Sheryl who has Acromegaly not an Acromegalic patient named Sheryl. You may think it is the same thing but, in my mind, it is not. Always acknowledge the person first, the disease second. I have acro. It does not have me. I call you Doctor out of respect because you worked very hard at being "Doctor". Well, I have worked very hard at being just Sheryl, please address me as such.
   I do not think you quite realize how important you are to me. Do you realize that you have my life in your hands? Every decision you make in regards to my health affects me greatly. I would describe our relationship as one of love and hate. I love that you are trying to help me and make my health more stable but I hate that you tend to leave me in the dark. Don't think that I do not hear you whispering outside my patient room nor see the looks of annoyance on your face when I ask you questions that I feel are important. If I understood everything about this disease and knew where you were coming from when you spoke, I would be standing right next to you sporting a white lab coat and stethoscope too. Sadly, I am just Sheryl who has Acromegaly and needs to ask questions and maybe even be told things over and over again before I comprehend it. I am sure you will agree that, the more I know about this disease, the more we can work as a team instead of the you as the captain just barking out orders! 
   Doctor, I am scared. I am angry and I am frustrated. Surely if you could step into my shoes you would feel the same. If you try a little bit, you can probably even imagine at least a little of what I go through. After all, you are the one who is supposed to know all about this! I do apologize for cursing you out and blaming you under my breath. You are an easy target for my anger because you are the one that decides if I get better or worse. You did not give me this disease nor did you ask to have me as a patient. I will try harder to be patient with you if you will do the same for me.
   I do not need your sympathy but a little compassion would be helpful. Wouldn't hurt to occasionally look at me or touch my hand or shoulder and tell me you are doing everything in your power to help me or that everything will be alright. Don't assume I have tons of support when I leave your office because I do not. I know your job is not easy. Lots of people, like me, look to you to create miracles. Some even put you right up there with God thinking you can miraculously heal people. I know you are not powerful in that way but I do know that you possess the knowledge and tools to help me. I would just like your actions to reflect that. I am feeling like I am getting the run-around, like you are tired of dealing with me. Trust me, you are not alone in that thought if you are tired of me and my case. Lots of people are, including me.... and my ex and my family and friends who used to be there for me.
   So, in closing Doctor, next time you open the patient room door and see me sitting there, please walk in with a smile to reassure me that you dont mind me being there....again! Please look me in the eye with interest when I ask you questions so I know that you are listening. Please just tell me with sincerity in your voice and your eyes that you are doing everything you can to help me fight this disease. You can still be team captain but please let me join the team. I am tired of sitting on the bench.
 
Sincerely, Sheryl who has Acromegaly

P.S. Have I told you how much I need you?

A Colo-what? A scope where!!!

Colonoscopy....ok, so maybe it is not as bad as the picture, allthough, that is the first thing that came to mind when I was told I needed one! OUCH! Actually, a colonoscopy is not painful at all, a little discomfort here and there maybe but not painful. I guess it was about a year or so after my dx of Acromegaly that the endo said I should have a colonoscopy. My first thoughts...Aren't those for old people and men? I knew of them because my father had many done over the years. I never did ask him exactly what it was though. All I knew was it involved a really long scope and my big fat bare vulnerable rump! Really? Are you sure I NEED this? Two weeks later I found myself at the pharmacy picking up a gallon container of powdered something and a flavor packet. Oh great! I get to pick a flavor. I thought if I had to drink that much I might as well pick a favorite. I chose grape but a woman quickly interrupted me to tell me that the lemonade was the best one to choose. Ok, I like lemonade. I can handle that too. I went home and read the instructions carefully as I was told to ...light diet, no food the day before and drink this liquid at the times given...no problem...OR SO I THOUGHT! Lemonade MY ASS!!! Oh my gosh, it was the most godawful liquid I have ever tasted in my life. Even the catscan juice was not this bad! A gallon, really? the whole effin gallon??? Aaaargh!!!!!! I think I can,I think I can, I think I can, I dont want to, I dont want to. No choice, down the hatch, sorry tastebuds, lemonade will never have the same meaning again. To this day, everytime someone mentions colonscopy I automatically have that taste in my mouth and the nausea that accompanied it. Thank God these things are not yearly! Anyway. to the test....As if lying on a table on my side with everything draped except for my butt was not embarrassing enough, My doctor whom I never met walked in. Stares at my butt for a monent and says in his deep Scandinavian accent "what are you doing here?" I am laying naked on a bed surrounded by scopes and you are asking me what I am doing there. Dear Lord help me! Great, he has no idea what he is even doing? I told him I am here for a colonoscopy obviously. He replies, clearly annoyed, "you are too young for a colonoscopy" Wonderful, pass me my panties and I will be on my way! Evidently somewhere in his schooling they forgot to teach him that people with Acromegaly exist and are prone to polyps. I tell him I have acro, his response "and????" I think to myself, lay down and I will show you where to shove your scope! He was so incredibly rude. Had I not been drugged by now, I would have gotten up and left. The sedation wore off after a short while...guess he also did not know to adjust the dose for my size. No matter to me though. It was sort of interesting watching everything on the camera. There was no pain involved, just a little discomfort, which one would expect having a two foot long scope shoved up your rear :-D  A few polyps removed but they were benign, no biggie....I am good for another three to five years...which is good, hopefully by then the doctors will have less to work with lol!
Make sure those of you with Acro get your colonoscopies done at least every three- five years. Do not take "no" for an answer! It is an important issue.

Mental Illness

After chatting with a dear friend this evening, I decided to blog about a subject that nobody likes to speak about.Mental Illness.

As many as 1 in every four people suffer from some sort of mental illness. I have never been afraid to speak about my mental illness when i am asked but then again,most people never think to ask. They see my physical ailments and changes but they can not see the silent pain I endure, so they do not think to ask and I do not just throw it out there either...I mean, really, it is easy for me to stand there and say "this weather is making my joints hurt more".People understand that pain, but how often does the opportunity come up for me to say " So, do you see the walls closing in on us too?" or "So, how about those Lakers, number 19 kept staring at me throughout the entire game and I am pretty sure he followed me home".

Here is my story of mental illness..I will try to make it short. A lot of details are left out because there are way too many too list!

Just a quick background of things in my past that may have triggered my mental illness...rape and molestation, bullied my entire life from kids at school and people in the community,overweight and unattractive,left at the bottom of the food chain, used and abused by several men,diagnosed with two rare diseases...........those were the major things anyway.

Despite everything I have been through, I look back now and wonder how much of my mental illness was triggered by trauma and how much was related to physical illnesses and chemical imbalances. Sure I had more than enough reasons to be depressed and feel like I was losing my mind but I am not convinced it was all mentally/emotionally based. My problems began around the age of 5. I can remember laying in my bed at night terrified of clowns and open windows. I sleepwalked at night. My parents had to keep the doors locked because they found me outside in the street one night. By age ten I would lay in the dark and feel like the walls and ceiling were coming closer to me. Thought for sure every time that I was going to be crushed.By age 10, I was seeing things, hearing things,feeling depressed and anxious. I would rock myself when I was alone. Age 12, puberty began.I was a whirlwind of emotions every day, highs and lows.I became a great cutter. Self mutilation somehow made me feel better but I was really doing it hoping that someone would notice and ask me what was wrong.....nobody ever noticed. Nobody asked. Instead I took on the nicknames "Bambi" because they thought I was bamming into things and "clutsy".My dad's nickname for me "stinky". My Grandmother and aunt named me "brat" which I never understood because I was always the quiet withdrawn one. By age 15 I became suicidal and was having periods they called "blackouts". I was conscious but never had any recollection of what I had done during these times. Was also fainting at times and seemed to come across as "high" even though I have never in my life even tried a street drug or taken meds not meant for me. Depression was very bad now and headaches began. I ended up hospitalized for over six months in a behavioral institute. It was there that I was labeled manic depressive and bi-polar along with severely chemically imbalanced. I didn't care. I didn't care about much of anything for years. By age 19 things were looking up as far as mental issues...depression continued but meds were no longer needed. After about five years or so, I noticed that there were times when i just seemed to be in a fog, i didn't worry though. I was still in control.

When I was diagnosed with Acromegaly in 2007, my world seemed to come crashing down on me. My mind was uncontrollable as were my emotions.I found myself very mentally and emotionally vulnerable. Within six months I was declared SMI by the state of Arizona. For those who are not familiar with the term SMI....it stands for Severely Mentally Ill. All the old feelings and symptoms I had crept back into my life and brought their friends with. I began having nightmares on a regular basis, all centered around my death. Anxiety got the best of me too, I began isolating myself in my bedroom. It was my children that had to force me out to cook food and take them places. I was content sitting all day in the dark, laying down wrapped in a blanket, holding my giraffe and crying. My life lost meaning for a while.Even the times I would go out, I felt alone. I knew people were around me but I could not really hear them or see them. I remember times that I would just become so outraged for no reason. Thank God I could feel it coming. I sounded the warning to my children every time to stay away from me. My babies were so confused by all I was going through that there were times that I just knew they would be better off without me. I had wished Acro was a fatal disease.Suicide thoughts crossed my mind a time or two and I cut for the first time in over 15 years.Damn this fucking disease! How dare you ruin the lives of my children! You want me? Take me now. I would do anything to not hurt my children in any way. Thank God my daughter knew me well enough at her young age to tell me when she saw changes in me. "mom you are not eating again. Mom, you need to bathe, Mom, you have to feed us every day. Mom, you have to come out of your room." That lasted about a year or so. I am so grateful for my children staying by me and not resenting me.

Stress is powerful when not controlled. It makes the mind do and think crazy thoughts. With the help of therapy, psychiatrist and counseling, friends, my children and God, I have found peace in my life. I still fight the depression and sometimes the cutting too. Mood swings come and go on a smaller scale and the anxiety still comes to visit.Sitting in church I have to be in the very back row, I can not concentrate on the sermon if anyone is behind me. I feel like my mental state at times is in fact mental but other times I feel like it is Acro/hormone related, especially the times where I cry apparently just to cry or get angry for no reason.

I hope that by me posting this, others with mental illness will understand that they are not alone and it is ok to talk about it. Mental Illness is just as much an illness as Acromegaly is. There are no cures for either but they can be controlled. Love yourself. Understand yourself. Take the time to be your own best friend. Things can be better but you have to work at it. Like any other disease, if you ignore your mental health issues they will get worse, not fade away.

****For those who have been messaging me since I blogged this..I am doing great now. There have been no more issues with suicidal thoughts or cutting. I love myself and my life. I have come to terms with many things, the biggest one being that this is my life, this is who I am. Everything in life happens for reason. The reasons for all my happenings, I believe, was to make me the strongest person I could be and to put me in a position where I could not just empathize with people in need, I could sympathize with them. I believe with all my heart that my "title" in life is Caregiver. My unconditional love for people began at a very early age for me. Nobody in my family is like me in any way so it is not something that I learned, it was embedded in me. I look back and I am not bitter by all the trauma, I am blessed. The only thing that has ever made me truly happy in life, besides my children,has been helping others. I am honored God has chosen me to work along side of Him. Do not feel sad for me. I am not suffering but, there are many others who are. Please take your compassion and concern for me and gift it to someone who really needs it. There are many people in this world who have not found peace. I love you all!

Really?? You Screwed up again!

I am blogging this morning out of pure anger and frustration. A few weeks ago my doctor ordered an OGTT (oral glucose tolerance test)..GH based. That is the test where they make you chug 75mgs of pure sugar water and then draw your blood every hour for three hours. Not fun for for anyone but way not fun for a diabetic like me. The test is meant to spike your sugar, then make you crash........and I crash big time, every time. This test takes four hours but I pay the price for it for a few days after. Anyway.....I had this test done two weeks ago only to find that they forgot to include my GH levels. So i go back again and once again they screw the test up. This morning I go to the lab, now very frustrated, wait for an hour for my name to be called, already feeling shaky because I have not eaten. Having prepared myself for the days to come mentally. I figure, this time I am going to make sure they do it right! Sheryl Colstock? Yes. "are you fasting?" Yes. Have a seat. :o)  I sit in the dumb chair that sucks your butt down and seems to create a seal to hold you in..uncomfortable to say the least. She draws a tube of blood and says "ok, you're done.have a nice day". Wait a minute! Where is my liquid bomb I am supposed to drink? I have two orders today. She just forgot, I am sure sure. I brought an order with me and another that was called in. She walks away to check, obviously bothered by the fact that I am questioning her thoroughness. She shows me the paper work......... Failure number three. The doctor screwed up this time and ordered a GH and Insulin level instead. My insurance already hates me and wishes me dead because my medical bills are already well over 20 grand a month. I am sure one of these screw ups in going to be the straw that broke the camels back! It takes me weeks up to months sometimes just to get certain tests ok'd by my insurance. I am working with a neurosurgeon, PCP and a lab. How is it possible that at least two of the three can not get their data straight and order me the f***** right test! These are the people who have my life in their hands? These are the people that decide my fate? I am doomed. I mean, c'mon! It is a frickin blood test, not rocket science!!!!!!!!!!! Situations like these are the things that trigger my anger and frustration and make me want to say , enough already, I have had enough.........no more needles, no more meds, no MRI's, no testing, no surgeries....no nothing! Just leave me the hell alone. Thank God for giving me and abundance of strength and patience because, without it, I may be here.
............Back to the drawing board...call the receptionist and ask her to once AGAIN get an authorization for an OGTT w/ GH draws and then call the nurse and ask her to ask the PCP to call the nurse of the Neuro to get the right lab codes. Then fill out the lab order correctly and call it into the lab. Lastly, wait another few weeks for permission to go have it done. Two more weeks to wait for results. Another few weeks for the neuro to call. Good thing I do not have any other responsibilities to tend to and can dedicate all my time to my health. OH WAIT, I almost forgot I am a single mom, chaffeur, housecleaner,cook, bill payer, grocery shopper, dog walker, errand runner,caregiver and support system. Imagine that.

My Medical Issues

Thought I would make a list of my medical issues to let others know what I am really dealing with. Here goes! 

• Acromegaly
• Multiple Endocrine Neoplasia Syndrome type 1
• Neuropathy
• Carpal Tunnel
• Degenerative Disc Disease
• Degenerative Bone Disease
• Osteopenia
• Hyperparathyroidism
• Vitamin D deficiency
• Hyperinsulinemia
• Diabetes 2
• Asthma
• Allergic Bronchitis
• Scoliosis
• Eczema
• Bone spurs
• Calcified Ribcage
• Arthritis
• Osteoarthritis in back/hips
• Bi-Polar
• Depression
• PTSD
• Fibromyalgia
• Hypoglycemia
• H palori
• Vision Loss (dx unknown)
• Hearing Loss
• Temporo Mandibular Joint Disorder TMJ
• Migraines
• Nausea
• Chronic Fatigue Syndrome
• Prognathism
• Frontal Bossing
• Hemmoroids
• Skin Tags
• Boils
• Kidney Stones
• Bladder Control
• Sleep Apnea

  Have had in the Past

• Endometriosis 
• Polycystic Ovarian Syndrome
• Cavity Tumors
• Right Sided TIA
•  

Well, There ya have it! That is my list of health issues that I deal with. Every day is a combination of health issues. Some days I deal with a few. Some days I cope with a handful. Some days they all gang up on me and I just want to curl up and cease to exist for a little while.

•  



Multiple Endocrine Neoplasia Syndrome

Multiple endocrine neoplasia, type 1 (MEN 1), sometimes called Wermer's syndrome, is a rare disorder that causes tumors in the endocrine glands and parts of the small intestine and stomach. In MEN 1, the endocrine glands — usually the parathyroids, pancreas and pituitary — grow tumors and release excessive amounts of hormones that can lead to disease. However, the tumors are usually not cancerous (benign).
The excess hormones can cause symptoms such as tiredness, bone pain, fractures and kidney stones, as well as stomach or intestinal ulcers. Although MEN 1 can't be cured, if regular testing detects problems, doctors can provide treatment as needed.
MEN 1 is an inherited disorder, meaning people who have the gene mutation can pass it on to their children. Each child has a 50 percent chance of inheriting the disorder.

        I was diagnosed with this rare disease two years after my Acromegaly diagnosis....Again, on my birthday! I guess I was not as devastated with this diagnosis because I was still numb from the acro diagnosis two years earlier. As I became more sick over the years the endocrinologist began to question rather or not there was more going on with me.I had symptoms that did not coincide with Acromegaly. She sat me down and asked me, what seemed to be a thousand questions, but I am sure it was not and there was no way humanly possible for her to ask me 1000 questions in 15 minutes, the maximum time I was allowed for a visit. Questions answered, tests ran...." You have Multiple Endocrine Neoplasia Syndrome type 1, it is a very rare and serious disease" Great! If one does not do me in than the other will.
The basis for my diagnosis this time. The three P's are affected..Pituitary (Acromegaly), Parathyroid (hyperparathyroidism), Pancreas (diabetes 2 and hyperinsulinemia).Basically your entire endocrine system becomes affected and pancreatic cancer is very common. Some of the symptoms I had been experiencing that the doctor felt were more fatigued than the usual fatigue, sensitivity to hot/cold. Summer time I wore hoodies and winter, my kids froze while I was cozy in a tee. Also, began having alot more GI issues than normal, kidney stones frequently, nausea,weakness and the onset of Osteoporosis...often felt like I had a horrible flu as well. In my earlier years I had endometriosis and polycystic Ovarian Syndrome as well. All related, now I know.
There is not anything that can be done specifically for MEN1. It is just constant monitoring, tumor searching, lab testing and treating the symptoms as they arise.

http://en.wikipedia.org/wiki/Multiple_endocrine_neoplasia_type_1

My Many Faces of Acro

These are my many faces of acro. To the left is a photo of me at 19 years old, the time when I began to grow again. The photo on the right is me at my heaviest,age 26, before acro diagnosis. I was eating carbs like crazy. The cravings were controlling my life. I would gorge myself with food and then sleep 16 to 18 hours a day. I stopped weighing myself at 312 pounds. I was always too tired to do anything. On top of being so overweight, I was also having problems with major depression, Endometriosis and PCOS.

This photo below was from 2008, just 6 months after my diagnosis...levels at 976,I was just beginning injections to control symptoms. I never had surgery because nobody could find any tumors. I remember the woman taking the picture telling me to try to open my eyes. I was so swollen, my eyebrows made my eyes look like slits.

This is me now. Still no surgery and my levels are out of control at 512. The swelling is not too bad but my jaw does continue to grow. I still have frontal bossing but all in all, I am pretty darn cute :o) My face has definitely changed a lot over the years but whose face doesn't change over the years!

The Magic Maker

A friend of mine, who also happens to have Acromegaly, jokingly said I should blog about him when I posted in our support group asking for suggestions on subjects. Be careful what you ask for Mike!

Here goes! I will keep this short and sweet. Mike is cool and awesome...two words he favors in conversation. He has a laidback easiness about him which I enjoy as well as many others in our support group do. Mike is an awesome magician, or so I hear. Haven't had the chance to see his magic in person..yet...but I will soon enough in Vegas! I have experienced a bit of his magic though. He probably does not even realize that he is performing when he is. I know this much.. Mike can make coins disappear, but not his Acro. Mike can make cards change their appearance, but not his own. There is one thing that Mike can do with his magic though that he has complete control over, knows by heart and can perform anywhere in any way on anyone. Mike has the magic to turn his friends' tears into smiles and despair into hope. That is magic embedded in his heart and in his soul.That magic is not something he learned from a book or can teach to a crowd. It is special magic performed by a magician like no other. I love Mike for his unconditional love for others like him, like us that are struggling with this, not so magical disease. My wish for my favorite magician in the world... Abracadabra Kalamazoo **POOF** Acro Be Gone!!   Luv Ya Mike♥

             

Lost in a Crowd

Growing up, no matter where I was or who I was with, I felt lost, like I just did not belong or fit in. Loneliness and isolation were nothing new to me but it was not overpowering, I was still able to find some enjoyment in my life at times. Somehow when I was diagnosed with Acromegaly, loneliness took on a whole new meaning to me. Those three haunting words "You have Acromegaly" sent me spiraling into a depression that locked me up and threw away the key. Just when I thought I was old enough and mature enough to know who I was and where I was going with my life, this disease entered my life, completely uninvited and took over. After my diagnosis I tried very hard to find support, someone who could understand me. I looked to my family and only found silence. I will never forget the day I went to tell my parents about my diagnosis. I waited a few days to regain my composure. On my way to their home I kept re-enacting in my head, how I would tell them what I had. How do you tell a parent that their youngest child may be dying? I felt like I was dying at the time. Upon arriving at my mom and dad's house, I turned the van off and sat there for a moment giving myself a pep talk silently "c'mon Sherry, you can do this" I pictured my mother bursting out in tears and my father holding me and telling me everything would be alright and that they would help me the whole way. I took a deep breathe and walked in. "Mom, Daddy, sit down..I need to tell you something. I went to the doctor a few days ago for my results" now in tears, "I have a brain tumor. I have a chronic disease called Acromegaly and there is no cure" I sit briefly and wait for the tears and embraces....nothing. Ok they are in shock,I will give it a minute to sink in....anytime now, is that a tear? No. No tears.No hugs. No questions. All I got was a few words from my mother "Oh well,(pause)What can ya do.(statement, not asking me).My father asked if my van ran ok on the trip down to the doctor. I was numb. Can they not hear me! Do they not see my tears and feel my heart sinking into my stomach? I knew at that very moment that I was going to be alone in this journey. Sure I tried other avenues for support...friends, other family, church...but it was "cover-up" support. Ya know "call me if you need anything" "I will pray for you" "make sure your kids help you around the house" There were a few exceptions to my lack of support. These people would do anything for me if I asked but I do not see or hear from them hardly ever. In the beginning people were kind and had many well-wishes and helped a lot financially but I think I wore out my welcome in their lives in a very short period of time. Little by little my friends and family disappeared completely. Was I a burden to them? Were they tired of my complaints...even though I never complained much out loud? Do they think I was miraculously cured and no longer needed them? Were they using me for brownie points with God? I had a lot of questions and doubts and concerns running through my mind. I could never walk away from someone if I truly cared about them.

So, here I am five years later, still not much of any support here where I live. I can be standing in the midst of a crowd of a thousand people and hear nothing and see nothing.I am alone in my mind. Sometimes I felt like I was not worthy to be cared about or to be loved.I have decided that I just need to surround myself with positive people who truly care and love me unconditionally. I do not expect pity or sympathy or favors or great acts of kindness because I have a chronic disease. I just want someone to listen to me when I need to say something or give me a hug when I am down or just hang out with me sometimes. I do not need those people in my life that walked away when I needed them most. I do not hold anything against them and I am not bitter. Some people just can not deal with those who are very ill for whatever reason. Some may feel guilty for being healthy or for being able to do the things I can not. Nobody has ever told me why they have left me. I can only speculate. For every door someone has walked out and closed in my life, someone awesome has re-opened it and walked in. I may not have much support at home but I have tons of support from others just like me who have Acromegaly. What more could I ask for?

A Little Resentment Maybe?

Breast Cancer Awareness, Relay for Life, Jumprope for Heart, Jerry Lewis Telethon, yellow ribbons, pink ribbons, green ribbons........So many organizations raising awareness, raising funds, getting answers, finding cures. Awesome!....but where does Acromegaly fit in? It doesn't and that is a problem for me. I realize that Acromegaly is a rare disease that most have never heard of it but my heart does not remember that when I see all the huge campaigns running to raise funds and awareness for other diseases and conditions. What makes their diseases more important than ours? Who cares if we are dying or suffering? Who wants to help US find a cure? Don't get me wrong, I am elated that people with cancers and Alzheimer and MS and MD and so on are finding funding for research and cures because I know now first hand ,how important it really is, but it does not stop me from feeling a little bit of resentment though. I want to see ads for Acromegaly Awareness month and receive phone calls asking for donations to help patients with Acromegaly. I want the damn ribbon of support, just a stupid little ten cent ribbon ......something to wear on my shirt and slap on my car for all to see to show my support and hopefully trigger people to ask me what I am supporting.
I know all this will happen some day, but we need it to happen now. We need research now. We need a cure now. I am listening to friends with Acromegaly saying they want to just give up. They are tired of fighting.  My eyes tear up every time I think about Acromegaly taking another precious life. I THANK Wayne Brown, founder of Acromegaly Community, for all his endless hard work. He is moving us to where we want and need to be. Have you asked Wayne lately what you can do to help raise awareness? Be proactive!

Let me add before I close that I do proudly wear my Acromegaly Community blue bracelet and my Acro t-shirt. A little story about my support bracelet. It was my first day wearing the bracelet. I was sitting in a waiting room waiting to be called back. A man sat quietly next to me for the longest time. All the sudden he says "Is it working?" Bewildered, I say"Is what working?". He replies, "are you Curing Loneliness" (written on the bracelet)My reply" You are talking to me aren't you?" I love that story! I went on to tell him about Acromegaly and he was genuinely interested.
My prayer for tonight, Acromegaly in shining lights for the world to see!
     "Alone we are rare, together we are strong"

Aren't You Embarrassed?

A friend of mine messaged me last night to ask me how I could post the pics I have posted on my blog. He said "Aren't you embarrassed?". Mind you, he said it lovingly and not in a way that I took it to mean embarrassed to show my genetically altered jacked up face. He simply meant, am I not embarrassed to be so bold as to show the world my "flaws". My response; I am not flawed in any way.
Flaw; physical blemish: a physical disfigurement that prevents something from being totally perfect and detracts from its value              I am perfect just the way I am. This is what God has made me and God dont make junk! AND my physical features certainly do not lower my value in any way, shape or form. Regardless of what I look like or how I change, I am still the same loveable, caring ,compassionate me and I would not change "me" for the world! I like me.

I am coming out, persay, and showing everyone the real me. No more photoshopping photos (except for the wonderful teeth whitener option). No more lookin for just the right light and finding just the right angle to hide my portruding jaw and my big nose. No more smiling with my mouth closed to hide the gap and jacked up teeth. No more taking pics from far away or chopping them off at the waist to hide my rump or pointing my legs inward to make my thighs appear more thin (learned that one from Tyra Banks).
How can I be a true advocate or role model for someone else if I am not proud of myself in my entirety. If I do not show the real me in my pics I post here, then how do I educate both those with and without Acromegaly. I want those with acro to see that they are not alone and it is ok to not hide what they think are "flaws". I am just like them. And for those who do not have acro, I want them to see what we deal with but at the same time I want them to know not to feel sorry. Someone loses their sight, they adapt. Someone loses a limb, they adapt. Acromegalics grow and change physically, we adapt.........it is not the end of the world, even though at times it sure does seem like it. We are human. It is ok to miss what we once had. Do I ever wish I had my body back? Sometimes yes. Sometimes no.I was never in the running for beauty queen, nor was I "quite the looker" or even a magnet of any kind. I was plain Jane and the girl no guy wanted to even be friends with let alone be with romantically involved with. I am just grateful  to have a body to house my wonderfully gorgeous heart and soul. I am beautiful as are all my friends.
        

Who Hi-Jacked My Teeth?

........or should I ask" what jacked up my teeth? Yes, "jacked up" perfectly describes a little more havoc Acro has created for me. I used to have a close to perfect smile...straight white perfectly spaced teeth, no underbite, just right. Now I look like Jack-o-Lantern gone bad! lol  First let me say that I whitened my teeth with photshop. The medications have yellowed my teeth to the point where there was no way I was posting the true color of them here up close! With that being said...everything else is real. I am not, repeat NOT missing a tooth! My jaw has grown so wide that my teeth have seperated and crammed themselves together on the bottom. I have noticed recently that my upper set of teeth are now beginning to seperate too. I have had to have many teeth pulled in the back because the shifting of my jaw and growth got to the point where my molars were being grinded down and eventually crushed. My teeth are all loose due to the spacing so I have to be careful with what I eat. My jaw no longer comes together. When I close my mouth, only two teeth actually touch and only on the left side. Chewing food can be difficult at times. Things like steak, porkchops I avoid eating in public because I look like a cow chewing cud when I eat them. They are also choking hazards for me because I can not grind the meat down enough to a safe size bite. Spaghetti, tortillas, lettuce...flat foods are hard too. They slip right through my teeth! I have to use my tongue to push the food up against my teeth to break it down. Guess I would say that I choke at least three times a week on food. Not great statistics! Eating a big meal can be exhausting and tends to cause me alot of jaw pain afterwards.There is not really anything that can be done at this time to fix my teeth in any way or my jaw because I am still growing. My levels are not under control. I could go through a very risky painful surgery to try and fix my jaw but it would grow right back. So, until I have been under control for 18 months, doctor says no fixing anything. I have gotten used to the way I look and I have adapted with eating. As long as I can eat my Oreos, I am good :o)

Good Thing I have a Big Mouth!

I have been accused on occassion of having a big mouth throughout my life. Little did I know that my "big mouth" would eventually become necessary to house a huge tongue...yet another sign of Acromegaly. The pictures depict my tongue on a good day. On a good day, I can close my mouth and swallow with no problem. Sadly, good days are few and far between.On a bad day my tongue swells so large that I can no longer close my mouth. It just sits in there resting between my upper and lower teeth..well, what's left of them...and the tip of my tongue slips thru my lips. Biting my tongue has become common practice for me and every morning I wake up with bite prints across the tip of my sore tongue. I am often caught literally with my tongue hanging out out of my mouth, almost chimp-like, with an occassional drool running down my chin. How embarrassing is that! Drooling mid-conversation is just something I have adapted to. I tell people, "excuse me, I'm teething". I have a fear of my tongue swelling to the point where my airway is completely cut off, I do not breathe through my nose at all. Wonder how much more my tongue can possible grow? Hopefully not too much more; it is already wreaking havoc in my mouth.Oddly, I can remember about ten years ago, 5 years before acro DX, entertaining my children and my nephews by sticking my tongue out and letting it flail back and forth while shaking my head. Kids thought it was hilarious. Little did I know at that time what was behind the enlarged tongue.

I used to have a big mouth, now I bite my tongue :o)