Tuesday, November 10, 2015

It's okay not to be okay

There is a purpose for every one of us.  Do you listen to the word of God and lead your thoughts, feelings and actions towards him or against? I know for me I try to listen, try to determine what my purpose here is and its hard to know if your doing right in Gods eyes.  I try to stay positive and to give my very best at everything I do.  My body would always tell me differently.  For me its a constant battle.  To everyone's surprise I still work a full time job as a store manager.  Yep, 7 diseases and other health conditions and I still work.  Not sure if that's considered dedication, stubbornness or just plain stupidity.  With that said I question myself, am I doing the right thing? Am I pushing myself too much? I haven't updated my blog in the past couple of months because of a change with work.  I was promoted and it has surely been a struggle. I have the following health diseases/conditions: Gastroparesis, Thyroid Disease, Primary Adrenal Insufficiency, Secondary Adrenal Insufficiency, Empty Sella Syndrome (flat pituitary gland), Raynaud's Disease, Irritable Bowel Syndrome, Dumping Syndrome, GERD, Anemic, Pylorospasms, Colon Spasms, Vitamin D and Iron Deficiency.

Lets do some catching up...
From my last blog I mentioned I wanted a second opinion from an endocrinologist. When your doctor tells you they don't know how to treat you and never returns your phone calls, its time to make a change.  You see I have to take medications to keep me alive.  I can't take a gamble on my life just because you don't know. I got a second opinion and I am so glad I did.  Hydrocortisone is basically measured on your body weight since there no real accurate test to test cortisol levels.  It is too dangerous for me to stop taking my medication or use a different medication to test.  Doctors determine the amounts of medication by looking at your body weight and height. Doctors use a table which shows ample amount of medication to be admitted.  If you get too much cortisol it will break down bone marrow and possible breakage will occur. I am 135 lbs at 5'3" I was told I needed to be on 20 mg of hydrocortisone daily; 10 mg in the morning, 5 mg early afternoon, 5 mg evening.  I must say making this change the extra 5 mg in the early afternoon has really helped me tremendously.  I knew something wasn't right because I was having a difficult time remembering things.  With the extra 5 mg, I am doing so much better.  My doctor also rechecked my thyroid and also tested me for celiac.  Thyroid is good and no signs of celiac disease.  I am happy with the results.

I recently had a physical including all blood work.  Some results came back completely normal which I am very thankful for, others were abnormally below like protein, glucose and creatinine.  Iron is still low even with me being on iron pills for over 5 months.  All of this doesn't surprise me. I know my body isn't working right and it's okay not to be okay.

Now my stomach is a different story.  I had another electrogastrogram which studies your stomach rhythm for digestion and intake volume.  The results were not what I had hoped.  The test showed that my intake volume is pretty much the same. Normal volume intake is 600cc, I could only consume 300cc.  My stomach will never be able to expand, therefore I can only consume small amounts of food at a time.  If I try to consume more food than it can hold, I become extremely sick, abdominal and colon becomes excruciating painful.  Since my pyloroplasty surgery, my stomach rhythm has also suffered.  Normal stomach rhythm is 3 per minute.  My stomach rhythm reduced to 1.  So even with my stomach rhythm is still very weak I am thankful I still have some movement.  Things could be so much more worse and I know that.  There are so many people out there that are going through so much more.  So many have died to even 1 of my diseases.  What amazes me is I am still alive.  I listened to my body and listened to God, I knew something wasn't right with me.  I have no shame whatsoever for gong to any doctor when I have a concern. What is your body telling you?  Don't ever wait to see if the symptoms you are having go away.  Don't second guess yourself or listen to others when they say you look fine.  I meet people all the time and no one can tell I am sick.  You know that old saying, don't judge a book by its cover? Our appearance covers up what is deep within our story. 

Leave your worries with God.  If it wasn't for our Lord and Savior I would have been lost. 
I will continue living life to become closer to him and strengthen my will to keep fighting my fight.