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.