Auto Immune Disorders

Okay so I have decided that this is something that I would like to blog about.  I have had so many different heath issues for many years.  Mostly with my stomach.  I have had my appendix and gallbladder taken out and have been on antacid medication for more years than I can remember.  Over the past three years I had been going downhill steadily.  It began with upset stomach, diarrhea, weight gain, depression.  Then accompanied by lack of energy and all over body pain. When I speak of diarrhea I mean 6 to 10 times a day and waves of nausea for no apparent reason.   I believe that my weight gain came from the depression I was feeling with not knowing what was wrong with me, but knowing something was!  The biggest problem came for me with the lack of energy and all over body pain.  I just couldn't figure it out.  I could sleep all night long and wake up feeling like I needed to sleep all day long.  The pain I would feel in my body was unlike any pain I can describe.  Right above my breasts there is a pressure point and that would hurt so badly.  My knees, ankles, back, thighs and so on.  I found it very difficult to even get comfortable but once I could make my way between sheets and pillows I would not move for hours.  Still not knowing what this was I continued to work and see specialists of all kinds.  I had every test you can imagine and had been diagnosed with several different diseases including cardio/pulmonary Lupus.  I even had an MRI on my liver and was told I had a cyst about 2"x2" and then was told right before my "procedure" (endoscopy) that they were wrong it wasn't that big.  I was told I have several cysts but none that were the size they first thought.  REALLY???

To back track a bit; at this point I was so weak that I collapsed at work and was taken to the ER by ambulance.  Not one doctor could find anything wrong.  I followed up with a cardiologist and gastrointerologist whom was performing the above mentioned "procedure".  I also saw an infectious disease doctor and they could not find anything either.  I was tested for everything you could imagine.  Finally, out of desperation a friend suggested that I see a nutritionist.   I went to Natural Grocers and found out they have a certified nutritionist on site for FREE.  I made an appointment.  This lady looked over all my blood tests and history and told me that she thought I might have a disease called Celiacs Disease.  It is a wheat and gluten allergy disease.  She recommended that I get tested for it.  She told me to stop eating all wheat and gluten products and gave me all sorts of nutritional information and natural supplements that would help my body absorb nutrition.  I began taking these things right away and also cut gluten and wheat out of my diet.  By the time I made it to the doctor to get a blood test for Celiacs Disease I had no wheat or gluten in my body so naturally I tested negative for the disease.  My nutritionist told me that when I had my "procedure" that I should have a biopsy done and that would give me an accurate diagnosis. 

I had the "procedure" done and after it was over the doctor told my girlfriend, Elizabeth who was my advocate that day because I didn't have anyone to go with me, that there was no evidence of Celiacs however I had a lot of inflammation in my stomach and upper intestines.  In the end she had NO answers.  Later on a follow up visit I found out that the biopsy they did was POSITIVE for Celiacs Disease. 

So now what?  It's been a little over a year since the diagnosis and while my inconsistent intestinal issues have gotten incredibly better I still could not get my energy back and could not explain the pain I was feeling in my body.  I worked a job that required me to be on my feet for 8 or more hours a day.  At the end of the day I could barely stand up for anything.  I began hitting my room and putting my feet up and waiting for time to go by so I could just sleep.  Then I would get up the next morning to start all over again.  Getting up was so hard!  Then I would find that the pain would subside for a while and the fatigue was not as bad so I began to monitor what I would eat to see if food was bringing on my "attacks" of pain and fatigue.  As far as I could tell it was not food.  I was like a new baby... took food out of my life and then introduced each new thing a little at a time until I knew what I could eat and how I would react to it.  Work was very stressful for me as I had to stand in one place for many hours.  My job title had changed and I was not longer moving around like I had done previously.  My new job was to stand at the door and greet customers.  Office Depot calls this the “X” position (expert position).  Believe it or not I began to feel really badly for those old people who greet you as you enter Wal-Mart and I also understood their need for stress mats to stand on.  I never got a stress mat I had to stand on the concrete floor.  For many people this is not a very hard job but for my body it was breaking it down.  I decided to put in for a transfer to another store whom would use my skills and talents in a better manner.  I got a transfer to one of the busiest stores in the district and it also had the most potential for Copy and Print growth.  I was put in that department to manage it and that is what I did.  I found that as long as I was moving around and not stressed out my body did well.  Keep in mind this store was a highly dysfunctional store and had a lot of management issues being in Copy and Print left me in my own little world with just my customers and not really having to deal with the staff.  I worked in this store for a little 16 months and have had three different store managers.  That in itself is stressful however in August 2010 my manager from the store I transferred from came to this store.  On his third day he wrote me up for being tardy.  I feel this was his way to keep me in the store because once you are written up you cannot transfer out to another store for six months.  Simultaneously to this my mother fell seriously ill in Florida.  I was so torn about going and seeing her and the stress of my job.  My mom and mines relationship was tenuous to say the least and I didn’t know if me being there would help or hinder.  Finally, I made the decision to go to FL.  In order for me to have five days off of work my store manager made me work ridiculous shifts.  A seven day straight shift and then a ten day straight shift.  On the eighth day of my ten day shift I collapsed.  I just couldn’t handle it anymore.  I found myself at the doctor once again in tears and pain and very weak.  My doctor and I felt it was best to take an FMLA to go to FL to see my mom and to take time off to get myself healthy again.  It was then that realized just how much mental stress can affect a person. 
I took three months off of work.  Two months were spent in FL helping my mother heal.  While I was there I found myself going through ups and downs.  The pain in my body never ended and a girlfriend of mine suggested that I see the doctor she goes to Kayzor Dah Dah.  I went in for a consultation and after a thorough physical she diagnosed me with Fibromyalgia.  As it turns out Fibromyalgia is not something you just get it is a disease that is secondary to something else.  In other words your body is stressed out by other problems that Fibromyalgia happens to creep in there because your body is not able to fight it off.  Fibromyalgia is what was causing my fatigue and pain.  My body would feel like Jello it was just the strangest thing.  I was treated with Tenz therapy, heat, cold, adjustments, Biofreeze and so on.  This Doctor was helping me. 
When I got home to Colorado I had one more month off work.  I found a doctor here who could treat Fibromyalgia, Kelly Schockley.  She is absolutely amazing.  She explains this disease so easily and has empathy and understanding of what I am feeling. Sometimes I think she is in my body because she knows so much of what I am feeling.  Kelly made me realize I was not crazy and that what I am going through is really real! 
What I have learned is that when I am under stress of mental or physical kind my body will tend to flare up more so then when I am not.  I have problems with inflammation which also causes my pain associated with Fibromyalgia.  The best thing is to keep moving and rest when your body says to.  If you over load your system it will shut down and usually it will stay shut down for days.  I keep a positive attitude as I am not going to let this disease win!  I am going to fight it with everything I have inside me.
Both Celiacs and Fibromyalgia are auto-immune disorders.  It’s very important for me to maintain a wheat free and gluten free diet.  When I do eat wheat or gluten I get very sick.  Diarrhea and sometimes throwing up, and I get so tired I can barely stand up.  I also, take supplements like plant enzymes to help my intestines absorb nutrition and an iron free multi vitamin.  All supplements I take are all natural, vegan, and easy to absorb.  I have learned how to cook gluten and wheat free and eat out the same.  It is sometimes a challenge but as long as the people I am around are not embarrassed or intolerant I am just fine. 
Because I have had a tremendous amount of stress at work since returning from my FMLA my health is going downhill again.   I saw my both my doctors yesterday and they both feel it is time for me to get another type of job with less stress.  In this economy it is rather difficult and it is very scary to be without a job.  I am putting my faith in God right now that He will do what is best for me and my family.  I am just along for the ride.  My doctor started me on a new medication called Savella for the Fibromyalgia.  I am to start it slowly and get myself up to the desired MG over a two week timeframe.  I started it last night and so far I am okay without side effects, however I am hopeful it will do the trick and take the pain away enough so I can start doing some core exercises again.  My doctor suggested that I go back to using my CPap machine along with my oxygen at night and he also order a huge panel of blood tests. 
Because of my Uncle’s recent death my cousin Wendy has made the family aware of a liver disease that is hereditary.  Because of this I have been tested for this disease also.  My son Adam will be tested as he seems to be following in my same footsteps, he will be tested next week. Below is an email she wrote to our entire family.

Hello All –

Just a note to let you all know the test results came in for genetic marker for hemochromatosis which Dad(Uncle Roy)  was diagnosed with.  He tested positive for the heterozygous marker (versus the homozygous one) which according to the Dr. was a milder version of the hereditary marker.  I still don’t understand everything about the condition, or the impact on offspring, siblings, etc. 

 My Dr. has suggested that I have a genetic blood test done by the end of the year to see if I have inherited this marker.  He has also suggested that siblings and their offspring be made aware of this condition and get tested as well.  This condition is treatable if detected early enough. 

I have copied a portion of an article below which I found on the internet.  It describes a little about hemochromatosis.  Dad’s death certificate described the cause of death as “non-alcoholic cirrhosis.”   I will pass along any additional information as I happen upon it. 

 Love you to you all, Wendy

What is hemochromatosis?
Hemochromatosis happens when too much iron builds up in the body. Your body needs iron to make hemoglobin, the part of your blood that carries oxygen to all of your cells. But when there is too much iron, it can damage the liver and heart.
The most common type of hemochromatosis runs in families. But people sometimes get it from having a lot of blood transfusions. Certain blood problems, liver disease, or alcoholism, or from taking too many iron pills.
Men are much more likely than women to have too much iron built up. Women get rid of extra iron through blood from their menstrual cycles and during pregnancy.
What are the symptoms?
Symptoms often don't appear until a person is 40 or older. This is because extra iron builds up slowly throughout the person’s life.
The early symptoms are somewhat vague or subtle. So this disease is sometimes mistaken for another condition. Early symptoms include:

·         Tiredness.

·         Weakness.

·         Pain in the joints.

·         Weight loss.

·         Pain in the belly.

·         Decreased sex drive.

·         A change in skin color (it gets darker).

·         Urinating more often.

How is hemochromatosis diagnosed?
Your doctor will do a physical exam and ask about your medical history. If the doctor suspects hemochromatosis, you will have blood tests to see if you have too much iron in your body.
Most of the time hemochromatosis is caused by a gene that runs in families. It can be found early with a blood test. If you have this disease, you may want to have your children tested to see if they have it. Other family members may also want to be tested. Talking to a genetic counselor will help you decide whether genetic testing is a good idea for you and your family.
How is it treated?
Treatment can reverse most symptoms and prevent damage to the liver, heart, and other organs. It involves getting rid of the extra iron in your body, usually by having blood taken out of your body on a regular schedule. Most people need to do this for the rest of their lives.
Sometimes medicines called chelating agents are used. These medicines gather up excess iron and remove it through the urine or stool.
Don't take extra vitamin C pills if you have hemochromatosis. Taking too much vitamin C can cause your body to absorb more of the iron you eat. But it’s okay to eat and drink foods that naturally contain vitamin C.
Can hemochromatosis be prevented?
Having hemochromatosis in your family doesn't mean that you will automatically get it. If you find out that you have inherited a gene that causes hemochromatosis, early treatment can sometimes keep you from getting it.
And if you do get it, treating it early can reverse most symptoms and prevent future problems.
Getting this disease by eating too much iron in your food is rare. But it’s always good to pay attention to how much iron you are getting in vitamins and the foods you eat.

I found it very interesting to see the symptoms as these symptoms mimic so many different types of diseases.  I truly feel it is best to know than not to know so I can take care of myself.  In the mean time I will most likely lose my job at Office Depot because of my attendance and lack of energy.  I have applied for jobs at Children’s Hospital where I can have a steadier schedule and not be on my feet for 8 hours a day.  Sometimes in life you just have to do what you feel is best for you and don’t look back.  I have spent the first 50 years of my life pleasing and taking care of others now it’s time for me to be selfish and take of myself.  This is continuous battle but one I am not going to lose!  I will fight and keep on going because I love to work, love to be active and want to be healthy for my grandchildren. 
I welcome any experiences advice or insight!  Hope this is helping someone besides me!