Monday, October 6, 2014

And so it continues...

Sometimes I get lost by digging deep into my thoughts and symptoms dealing with my diseases that I feel like I forget my loved ones around me.  I can only hope and pray I have done what I could for my children and that they know I love them so very much.  There's so many people who I see everyday and they have no clue that I am sick.  It's amazing how all my diseases are so completely invisible.  I don't like discussing my diseases because it makes me tear up while telling others my story.  Writing this blog, I can cry behind my words so that my tears may also be invisible.  My diseases is slowly killing me, spiritually, emotionally, mentally and physically.  I am learning I am not strong after all.  
So many nights I wake up in pain. Pain can be located in my abdominal area, either across the upper part almost like a burning sensation or like someone has punched me in the stomach.  Other times its my upper right side where my pyloric spasms or in the middle of my chest when having major acid reflux burning my esophagus and throat.  I try to reposition myself to reduce the pain.  I've even tried to get up to eat a piece of bread with small amount of tea to try to calm my stomach down but it just makes my symptoms worse.   No matter what I do nothing helps.  Inevitably its ends up being a restless night with work hours ahead of me.  Even taking ambien, I might get about 4 to 5 hours of good sleep. 

I know I have said this in the past, but its simply amazing "sarcastically speaking of course" that doctors find something other than what I am complaining about. I have had ear pain for about 4 months now but the pain comes and goes.  I recently saw an ENT doctor and had an CT scan with contrast done to help figure out why my ear hurts.  Well the findings was a tonsil that is 10 x's bigger than my other one.  The only thing is, its not on the same side I am having pain and the doctor doesn't know exactly why my tonsil is so big.  Visually looking at it, you can't see the difference between the two.  He believes the cause of ear pain is arthritis and TMJ.  He informed me that if I don't stop smoking I could develop throat cancer due to my lack of immune system, etc.  I am due to return within 6 months to see if my tonsil has worsen.  Honestly, I had no clue I was even having an issue with my tonsil.  I had no symptoms over than difficulty in swallowing.  Since then and having the scare of cancer thrown at me, I am determined to stop smoking.  As far as the TMJ, I don't think that is it.  I have had TMJ for 17 years and the pain I have in my ear is totally different.  I give up trying to figure me out.  I'm wondering if it has anything to do with me being ANA positive and my antinuclear antibodies are attacking my tonsil.   

Recently, I had another botox and balloon procedure on my pyloric.  My doctor indicated that I was a special kind of Gastroparesis patient.  He believes my main issue that caused me to have Gastroparesis is my pyloric.  He said I could continue having the botox and balloon procedure for the rest of my life or we could always look into having surgery to permanently fix my pyloric.  I reminded him that my youngest son had pyloric stenosis when he was 6 weeks old.  He thinks that's so ironic and fascinating.   My concerns with surgery, 1) I would have to be out of state in a hospital for God only knows how long 2) With having primary and secondary adrenal insufficiency I would be required IV cortisol and pray my body heals normal.  Having primary and secondary adrenal insufficiency I take longer to overcome illnesses and/or surgeries.  On a good note, my esophagitis is completely gone!  Doubling up on my Protonix really helped.  Hiatal hernia is still present.  Guess that sucker is never going to leave me. 

You would think I would know all my diseases by now but I don't.  For example, I was trying to figure out why is it when I have a bowel movement, I vomit as well.  I did find out that with IBS no vomiting normally occurs when having a bowel movement.  So why vomit?  Could be a reaction from constipation, perhaps related to my Gastroparesis. Whatever the case my be, its extremely annoying to have activity coming out of both ends at the same time.  Sorry to be so graphic but unfortunately this is my life now.  Things one would think its absolutely disgusting, becomes normal talk for people like me.  I do know my doctor was not pleased at me for not letting them know sooner I was at times having difficulties having a bowl movement and vomiting.  Needless to say, he expressed his concern and prescribed more Linzess for me to take daily.  Having IBS, is certainly no picnic.   

I am still not sure why I was chosen to carry the burden of all of my diseases.  I know it has brought me closer to our Lord and to be honest, I am ready to go when he is ready to take me. There are so many of us who are sick and diseased.  You never know if its a person who sits beside you on a bench at a park or that man or lady who in the check out line at the local grocery store.  When you look at my face, do you see beauty or do you see hurt, pain and all of my diseases? Please help spread awareness.  You never know who's life you will touch.