Sunday, December 27, 2015

My results from my roller coaster life

I have a glimpse of how Jesus felt with he was betrayed.  The greatest disappointment in life is knowing that the ones we care for are the ones who don't try to understand and turn their backs towards you.  Having rare diseases that are invisible are extremely hard for anyone to deal with.  People judge you by your appearance.  They look at you like you are great, beautiful and normal.  Yes my diseases are invisible but they have scarred and damaged me for the rest of my life.  I try to stay strong, work hard and act like I am normal but there comes a time when you ask yourself when is it time to just rest and tend to my health? I can't manage everything and everyone but there is no shame putting myself first. 

Food is one of the main comforts to everyone.  I never would have thought it would be my worse enemy.  There is no comfort with eating.  Taste buds love it but my stomach and intestines beg to differ.  Its like a constant roller coaster and I'm ready to get off this ride.  Lately the pain under my right rib cage has become extremely bad.  I went to see my gastroenterologist recently, had lots of blood work done but the results were all within the low normal range.  Soon I will be scheduled a CT just to make sure we are not missing anything. If anything it will be categorized as a spastic colon.  Doctor prescribed me 50 mg of tramadol to see if it would help with my pain. I was really apprehensive about being placed on pain medication because it really shuts down my whole system. Meaning, I could go for days without running to the bathroom.  With also having IBS, its not in my favor.  I noticed its help ease some of the pain but not all. 

I have lost another 5 lbs.  I am now 130 lbs.  I am not trying to loose the weight and I can see the weight loss in my face now.  My cheeks seem to be caving in a little. Which brings me to another subject... Recently I saw my dentist to take care of a small cavity.  It wasn't until after digging and digging she realized the tooth was actually dead.  She took another x-ray and it also showed an abscess. I was never bothered with that tooth.  A day later I am in the office of an oral surgeon.  The surgeon had to remove my tooth along with the abscess. What I thought was interesting was during the whole surgery, I was given an IV injection of 100 mg of cortisol to prevent an adrenal crises.  He wanted to be safe than sorry, which I really appreciate.  Two weeks went by and it was time for a recheck with the oral surgeon.  During those two weeks he had another specialist look closely at my x-rays.  I was told there is an area in my gum line and jaw bone that looks suspicious and needs to be addressed.  I am scheduled for another surgery next week.  A biopsy will be performed to see if I have periodontal disease.

I am on a lot of support groups on Facebook for every single one of my diseases.  There have been so many that have died with just one of my diseases.  I don't know why or how I am still alive with the 7 diseases I have.  I know for me, I have many disappointments in myself.  I can't do all that I want to do.  I can't walk long distances without leg pain, fatigue and dizziness. I can't bend over without having extreme nausea. I don't have the strength I used to have.  My blood pressure is always low to the point to where my doctors become concerned. I foresee my future to be gloomy with one ray of sun shine peaking though the clouds.  That one ray will be my reminder that God is still with me.  Our Lord has a plan for us all.  Tell me Jesus what is our ending? Will our ending be beautiful?  Will I be remembered?

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.

Thursday, July 23, 2015

fighting the fight

God gives you blessings along the way.  Realizing those blessings gives you the courage to continue fighting the fight.  These past 5 years have brought me so many health problems but even to this very day, I keep pushing forward and surrender all my troubles to him. 

Just when you think there is no cure, a little determination and guidance things began to change. I know it has been awhile since my last blog but I wanted to gather more information on recent test results.  About a month ago I had another gastric emptying test done to determine if the pyloroplasty surgery was a success or not.  For my gastric emptying test I had a difficult time finishing the radioactive eggs and toast.  I can't eat a large amount of food without getting nauseous and have abdominal pain.  After a week of patiently waiting, I finally got the results.  I had improved with some symptoms during the last 6 months since pyloroplasty surgery.  Vomiting has decreased 90%, bloating decreased 75%, hunger increased about 50% and I am now able to tolerate salads and more regular foods.  Pain and discomfort are still present. Weight has stable for a couple of months now. The results on my gastric emptying test after eating radioactive eggs and toast: 0 minutes I was at 100% retention, 60 minutes normal range is (37-90%) I was at 66.1%, 120 minutes normal range (30-60%) I dropped to 17.1%, 180 minutes normal range (10-29%) I was at 4.8%, 240 minutes normal range (0-9%) I was at 2.4%.  So in simple terms the positive aspect, I no longer have any food retention. Which is good.  I don't have to worry about food left in my stomach for 6 to 8 hours later after eating!!  The negative aspect, I now have dumping syndrome.  I switched from one thing to another.  With the pyloroplasty surgery my pyloris is permanently open, therefore foods are dumped into my intestines without fully being digested.  Now I know my stomach still is paralyzed because of it not being able to expand but what about my stomach rhythm?  Well in a few months I will have another electrogastrogram to test my stomach rhythm. I am praying my stomach rhythm is okay.  I don't want to have to get a stomach pacemaker.  On the other hand, I still have massive right upper quadrant pain, which I have had for over 4 yrs now.  My doctor seems to think the pain is coming from some other organ.  He suspects it is my colon.  My medication of bentyl was increased and started me on Citrucel.  If pain persist, which I am sure it will, my doctor will want to do a full body MRI with contrast to find out what exactly is causing the pain. 

I recently went in for a follow up visit with my endocrinologist to discuss the concern I have with dumping syndrome, energy levels basically dropping and absorption concerns with medications for my adrenal insufficiency.   After explaining to her what I was diagnosed with she immediately became concerned yet was at a loss.  You see, having dumping syndrome foods, medication, fluids not being properly digested in my stomach and going directly into intestines puts my body into stress and I'm not getting the nutrients I need.  For 8 weeks, I had to go to another one of my doctors office every 2 weeks just to get a B12 shot.  I am vitamin D deficient again. I am extremely concerned because if my body isn't getting what it needs, I am going to be in a world of hurt.  You see if I am not absorbing my hydrocortisone for the primary and secondary adrenal insufficiency then I could become so weak, very sick to my stomach, faint or end up in a coma.  To my surprise after bouncing thoughts back and forth between the both of us she was at a loss as to what I should do.  The only thing she kept saying was just stress dose.  Take 15 mg in the morning instead of 10 mg and in the evening take 10 mg instead of 5 mg of hydrocortisone but don't do it all the time because I could develop crushing syndrome.  She said to increase medications if I am extremely weak.  I know for a fact there are other ways to make sure I am getting enough hydrocortisone so I won't go into a downward spiral.  When I walked out of my doctors office I knew I needed to find another endocrinologist.  I can't just take a chance like that with my life.  I need to know what I should do and how to handle it all.  Not just wing it like she basically put it.  So when I go back to my other doctor next week to get rechecked on my B12 levels, I am going to ask for a referral to a new endocrinologist.  I really hate to do it especially considering she really saved my life by testing my cortisol levels and finding out I have 3 additional diseases. 

I'm just tired.  I am tired of going to all my doctors appointments when I have a day off of work.  I am tired of having to constantly remember to pop another pill for this or for that.  I am tired of not having any energy anymore, constantly hurting.  Being 41 years old I never knew I would end up with so many diseases.  Yet I know God is with me.  So I will continue fighting the fight.

Sunday, April 5, 2015

Adding New Desease to long list of conditions,

There are always twists and turns when dealing with health issues.  Nothing is ever the same, every day is different.  Some good days always follows with bad days.  Having so many health issues it becomes extremely hard to focus on other things such as your family, work, etc.   Only because your constantly thinking of how you feel, the pain, the multiple symptoms you feel and how your suppose to treat them.  Your constantly asking yourself when am I going to get a little relief or peace.  More changes have occurred with my health.  I must be the lucky one in my family who received all the bad genes. 
My recent visit with my gastroenterologist was surprising.  I informed him how I have been feeling since I had pyloroplasty surgery.  He asked if I had anything positive to say about the surgery, well doc besides vomiting less, no.  He doesn't think I have Gastroparesis anymore but thinks I developed Dumping Syndrome. Dumping Syndrome is when undigested contents of your stomach move too rapidly into your small bowel.  Symptoms include nausea, vomiting, abdominal cramps, diarrhea, feeling of fullness, cardiovascular - flushing, dizziness, lightheadedness and heart palpitations.  Symptoms could develop within 15 minutes to 3 hours after eating.  He suggested that I change my diet to be the opposite of Gastroparesis and to stay away from refined sugars.  With Dumping Syndrome if you consume refined sugars it rapidly absorbs water from the body causing more symptoms.  In response, the body releases large amounts of insulin to absorb the sugar, leading to low levels of sugar in the body (hypoglycemia). To be honest with you, I am scared to eat foods I haven't been able to eat in the past 5 years.  I have attempted to broaden my foods and so far it seems to be okay with my stomach.  I still don't have the nerve to eat a salad or raw vegetables.  I have tested myself with a small slice of coconut cake.  Boy that was a huge mistake!  For about an hour after eating it, I had massive abdominal and chest pain and kept vomiting a sugar substance. I had never experienced that feeling before.  It was totally weird and now I am scared to have anything sweet.  Its amazing how your fears control you.  We honestly wont know for sure if I have Gastroparesis still or Dumping Syndrome or both until I do another 4 hour gastric empting test in June.  So until then the guessing game on food continues. 
For about a month now I noticed something strange going on with my feet, especially my toes.  My body temperature tends to be low to begin with due to thyroid disease.  Normally if I am at home, I would take a bath to warm by body temperature.  I started noticing that my toes would start turning blue and had numbness in my hands and feet.  It became more alarming to me when I noticed it more frequent.  I saw my rheumatologist, told her what was going on and even showed her pictures of my blue toes, she had no clue what was going on with me and dismissed me.  After about a week pondering her words and still having blue toes at times, I knew I needed to get a second opinion.  I then decided to see my general practitioner and I am so glad I did.  I informed him of the numbness in my hands and feet, showed him the pictures and he immediately knew what was wrong.   He informed me that the numbness in my hands was from carpel tunnel syndrome and the numbness in my feet was due to tarsal tunnel syndrome.  Needless to say I have to have a nerve test done to determine the severity.  As for my blue toes, well I have yet another disease, Raynaud's Disease.  This makes 7 diseases that I have.  Raynaud's Disease basically means the arteries in the fingers and toes go into vasospasm when exposed to cold or stress, narrowing your vessels and temporarily limiting blood supply.  Over time, these small arteries may thicken slightly, further limiting blood flow.  I asked my doctor what is the worse thing that could happen with this disease.  His response, you could loose your toes.  Well that was all I needed to hear.  Sign me up doctor for whatever I need to be on.  I was prescribed 5 mg of Norvasc a day which is a calcium channel blockers.  The medication relaxes and opens up small blood vessels to help with circulation in the hands and feet.  I will return for a check up within a few weeks after my nerve test.  I did some research on Raynaud's Disease and imagine my surprise when I read being  ANA Positive has a connection with Raynaud's Disease.  I have been ANA Positive for over a year now.  What I need to do is to contact my endocrinologist to inform her of my new disease.  I wouldn't think my medication Hydrocortisone would  need to be adjusted considering I have Primary and Secondary Adrenal Insufficiency but to be on the safe side.
Lately my purse has been getting pretty heavy.  I take a total of 15 medications now and take my medications everywhere I go.  Wow, 41 years of age, 7 diseases and other conditions and I keep moving forward.  I know my limitations but I am not ready to give up this fight.  This strong willed woman wont allow these diseases to cripple me down,  I will continue to pray to  my dear Lord for his guidance and his healing hands to heal me so that I may live life to the fullest,   

Monday, February 16, 2015

Recent surgery

I can face uncertain days because he lives.   I find my strength through Jesus Christ. 
Since my last blog post, I had faced my fear.  Fear of not knowing how my body would react to a stressful situation.  Fear of wondering if I am making the right decision. Fear of how recovery from surgery would be.  So I laid my fear in Gods hands.  I had a discussion with a surgeon regarding pyloroplasty surgery in December. My gastroenterologist apparently is very good friends with my surgeon.  The surgeon already knew every detail about my health.  It was nice to know my doctor sought him out to inform him of my conditions.  After my talk with the surgeon, I decided to take a chance and have the surgery the day after Christmas.  The scared side of me wanted to run far away from that hospital but then my strong side said how much worse can things actually become, you can do it Sherry!  Initially I was told that I would have maybe 3 to 4 incisions on my abdominal area and surgery should only last about 2 hours.  However they wanted to do an endoscopic as well to make sure they did not puncture any holes in my stomach from surgery.  While waiting to go into surgery, I looked at Scott and you could see the worry in his eyes.  I gave him a kiss and the feeling of his love helped me be stronger.  
When I woke up after surgery, I discovered I actually had a total of 6 incisions on my abdominal area and the surgery took longer than expected.  So of course I couldn't help but wonder what in the world went wrong.  Apparently, my pyloric was attached to a lot of scar tissue from my gallbladder surgery back in 2010.  They had to detach it in order to proceed with the surgery.  Pyloroplasty consists of dividing the pyloric muscle and reconstructing the pyloric channel to improve gastric emptying.  Below is an example of how they refigured my pyloric. 
There is no guarantee that the surgery will be successful.  I was told I was the 9th person with their practice to have had that surgery.  Knowing that they see other patients out of state and in NC seems pretty fascinating, wouldn't you say?  They are eager to see how the gastric emptying and electrogastrogram tests will show in the near future.  If the results are better, than the surgery was a success.  I stayed overnight after my surgery.  They had me on morphine, which didn't do anything for my pain.  I cried when I had to move to go to the restroom.  Tears filled my eyes as I tried to move. The pain was so unbearable.  My chest hurt to breath.  It felt as if my ribs had been crushed it hurt so bad.  I finally told the nurse I couldn't handle the pain anymore and needed something else.  That's when they finally put me on Norco which was a life saver and kept me on it after a week from surgery to help during my recovery time.  That first week after surgery was really rough.  Sure I had pain medication, but as we all know pain medication can cause constipation when you have a stomach disease and IBS.  The pain was extreme.  I couldn't find a good position when trying to sleep.  If I slept on my side, it felt like my whole abdominal area was ripping out of me. 
It took about 1 1/2 weeks for me to get back on my feet and get back in the groove of things.  I was determined to be back to work on the 5th of January.  I knew I had a few limitations but I refused to give in to anything.  I had to be on a liquid/puree diet for 6 weeks after surgery.  Once 5 weeks came around I had already lost another 5 lbs.  I tested myself every now and then with small amounts of whole foods.  By the time 6 weeks came around I wanted to eat everything in sight!  At that point I didn't care if I would hurt or not.  I cant really tell totally if the surgery was a success.  I still have pains, acid reflux, only vomited twice since surgery and I still am not getting the nutrients I need.  I guess time will tell.  As of today, almost 2 months after surgery, I haven't gained any of the lost weight back.  I am able to eat foods but still can't consume more than a cup of food, so that hasn't gotten better.  I see my gastroenterologist in March and I'm sure he will schedule more tests.  I am trying to stay positive.  I refuse to give up.  I give everyday my best. 
On another note, my recent visit with my rheumatologist she couldn't stress enough the importance for me to be aware of any changes with my health.  Such as, becoming too sensitive to the sun, develop a rash, mouth sores or joints becoming red or inflamed.  She told me if symptoms show to notify her immediately in fear of lupus.  I've been watching out for signs but I am not going to stress out over every little symptom that I have.  I can't!  Stress alone cause so much havoc to my body dealing with other diseases, I certainly don't need to add anything more. 
Speaking of changes, my endocrinologist informed me that yes, once again I am vitamin D deficient.  Which of course explains my leg pains.  I am now taking 2000 units of vitamin D.  However, my thyroid levels are completely normal!  Which is awesome!   
Until my next blog, I will continue to pray, strive to keep going and hope to become better. I would love not to have any health issues.  Hey, I can dream right?