Sunday, December 1, 2013

My Life with 5 Diseases

I started this blog with all intentions to revolve around my stomach disease, Gastroparesis.  However due to other health conditions taking a dramatic toll on me I have decided to join them all together in one blog.  I do hope my fellow readers on Gastroparesis continue to read because I have learned that all my diseases are linked together, cause similar symptoms and you just might find it extremely interesting, even helpful. 

Its amazing how one thing can lead to another and cause so many complications for your body.  These past of years have been on a constant roller coaster ride for me.  Honestly, I am ready to get off this ride and pleading to have my life back.  I have been recently diagnosed with my 5th disease and I feel like I am loosing.  I tend to question myself all the time.  Why am I going through so much right now? I heard something on a local radio station WMHK, a Christian radio station, and they were discussing how our Lord gives us things to make us change. For me, I know Jesus is my Lord and Savior but how does he want me to change for him? I started this blog initially to help others and maybe gather information from my experiences to help others cope and to help raise awareness to others who have never heard of a rare stomach disease called Gastroparesis.  But now I am expanding my blog to not only include my experience with Gastroparesis but also Primary Adrenal Insufficiency, Secondary Adrenal Insufficiency, Hashimoto Thyroiditis and Empty Sella Syndrome.   

I'll give a little recap.. I was diagnosed with thyroid problems 17 years ago.  Over the years of having constant change in medications and going back and forth between having hyper and hypo, it was determined I had Hashimoto Thyroiditis Disease.  I knew not having your thyroid levels not correct over a long period of time could cause harm to my body. After many years seeing different Endocrinologist and baffling every one of them as to why I could not get leveled out, I finally have the reason why.  It wasn't until I was referred to a new Endocrinologist that she discovered something strange with my blood results and wanted to run more tests.  After doing a cortisol test injection and finding out my body had no reaction to the injection was one missing piece to my strange puzzle.  My adrenal glands are not functioning properly.  Adrenal glands are above your kidneys,  They release a hormone to stable your body under stress, whether the stress is caused by infections, physical stress, etc.  However mine doesn't work properly due to my autoimmune disease, Hashimoto Thyroiditis.  All these years finally caught up to me.  Some symptoms include chronic fatigue, dizziness, low blood pressure, muscle aches, loss of weight, nausea, vomiting and diarrhea.  Which brings me back to Gastroparesis...  One of the many reasons for causes of delayed gastric emptying aka Gastroparesis is Adrenal Insufficiency. Yep.. you read right.  During my research I discovered that if my doctor had not discovered my Primary and Secondary Adrenal Insufficiency, I would have only had less than a two year life span left.  Now I have to keep hydrocordisone oral medication on hand at all times.  I take 10 mg in the morning and 5 mg at night, which is a low dosage.  If I am sick, such as diarrhea, have a fever of 100 or more or if I have an infection, I have to double or triple my hydrocortisone.  If I am too weak, vomiting and can't take the medication orally, I must be given an injection of cortisol and immediately be admitted to the hospital.  Recently I had to show my kids and boyfriend how to give me an injection using medication and syringe which is kept with me at all times and now have to wear a medical alert bracelet.  Possible complications for adrenal crisis, coma, seizures, shock and even death.  Side effects from the medication I am on is too long to type out.  I was told by my thyroid specialist its extremely important that I keep constant communication with them.  Doctor is on call 24/7. My life revolves around a tiny little pill to keep me alive for the rest of my life.  In the picture below is the injectable and oral medication of hydrocortisone with syringe that is with me at all times.

In my last blog I mentioned I had Empty Sella Syndrome.  My doctor informed me I had to have had it since birth due to my pituitary gland being flattened.   It just took this long for my body to shut down.  The pituitary gland makes several hormones that controls other glands in your body.  I have two out of four glands that do not function, adrenal and thyroid glands. 

Recently I went back to NC for a small intestinal bacterial overgrowth test.  That was a nasty tasting test but the results were what I expected, no bacterial overgrowth!  I am happy about the results, even told the nurse she made my day.  I didn't think I had a bacterial overgrowth because I would have serious side effects and I wasn't having any. 

I get so depressed writing my blog.  I know there is always at least a month span between each post but I get to the point to where I loose hope.  Sometimes its better to ignore your troubles and feel somewhat normal.  Many of us who have Gastroparesis, Primary and Secondary Adrenal Insufficiency, etc., don't feel normal.  We never will.  Many friends and family think its all in our minds, don't believe us when we express our emotions or concerns.  Many of us have lost so many friends because they would rather not deal with people like us.  But you know what?  We have gained so much more!  We have gained knowledge and help each other out.  We have gained friendship with others who suffer with diseases.  We have gained something that other average people wont ever acknowledge, the value of life.  When your constantly being told you have one disease after another life tendency becomes more valuable.   On a day to day basis, I put a smile on my face, treat others the way I would want to be treated, hope and pray I made a difference in someone's life and hope I continue to live longer.