let's get educated

I woke up this morning, jumped on my computer, and was taken aback by the enormous response I got to starting this blog.  Very exciting.  Changes need to be made, and the only way for that to happen is for people to aware and working together.

I thought I might give y'all some layman's definitions of all the confusing terminology.  Many of these diseases are not well know.  I am not a professional.  I am not a doctor or a scientist.  I just consider myself a professional patient.  I will post links to sites with professional/ scientific definitions. 

I'll start with Hashimoto's.  I was 13 when I got this diagnosis.  At the time, the cartoon Hunchback of Notre Dame was in theatres.  I always thought of the hunchback "Quasimodo" when I heard I had this.  It is an autoimmune disease of the thyroid gland.  Autoimmune diseases happen when your body's own immune system begins attacking healthy tissue instead of fighting invaders.  The soldiers are the antibodies.  Doctors can identify specific antibodies to diagnose different autoimmune diseases.  The thyroid gland produces hormones that help regulate many things in your body, primarily your metabolism. 

Next we move on to Type I Diabetes.  Also, an autoimmune disease.  Many people are familiar with diabetes in some sense because Type II is running amok.  These are two very different diseases.  Type I, formerly known as juvenile diabetes, is when the antibodies attack the beta cells in your pancreas that produce insulin.  Insulin is a hormone that controls blood sugar levels.  Type I diabetics require insulin injections on a daily basis.  I personally use a pump.  It is a device that has an infusion set that is attached to my abdominal area for a period of 3 days at a time.  It is the size of a pager, and it works very similar to a pancreas.  I just manually tell it what to do with buttons.  This is the greatest invention, in my opinion, because it prevents me from having to do multiple injections everyday.

The next diagnosis I heard was Interstitial Cystitis.  This is not something I would normally, openly talk about.  When it comes to health issues, however, there should be no shame.  No judge zone.  It is not our fault.  Again, this is an autoimmune disease.  In this case, the lining of your bladder is attacked.  This can reduce or destroy the mucus lining.  The bladder fills with urine, as every body's does, and without the protection of that lining, the acidity causes lesions and ulcers.  You could imagine, this is a painful process.  In some cases, nearly debilitating.  This disease actually goes through active times and times of remission.  Thankfully for me, I have been in remission for about 11 months at this point.  Remission can last anywhere from a few days to a few years.  Treatment is usually oral medication.

At this point, you may be thinking "do autoimmune diseases come in clusters?"  Well, some do.  Many patients with autoimmune disease have 2, 3 or 4 different diseases.  To my knowledge, that is the typical max.  In my case, overachiever that I am, I didn't stop at 3.  We fast forward to the diagnosis of epilepsy.  Epilepsy is not an autoimmune disease, however it is chronic.  That means I will have it for the rest of my life.  As are all the autoimmune diseases.  There is no cure.  Epilepsy is simply defined as having more than one recorded seizure in the span of one year with no obvious cause such as head trauma or high fever.  I personally have grand mal, petit mal, and partial complex seizures.  We have not found a cause at this point.

On to another autoimmune disease?  Yes, we are.  Celiac disease happens when antibodies attack the lining of the small intestine  causing damage when patients ingest gluten.  Gluten is a protein found in wheat, rye, and barley.  Celiac patients are warned to avoid oats, due to the fact that oats are usually processed in the same facility as the other grains.  There is a difference between an allergy to gluten, an intolerance to gluten, and full blown celiac disease.  Full blown celiac disease can cause severe reactions to the consumption of gluten.  A digestive issue that is certainly not fun!

Celiac disease can cause malnutrition to the point of effecting other body symptoms and creating widespread symptoms.  When these symptoms didn't slow even with eliminating gluten completely, it was determined that I definitely had a connective tissue disease.  It has been classified as undifferentiated, mixed, and full blown lupus.  Depending on the doctor and the test results.  It is considered a rheumatological disease.  That covers many autoimmune disease.  Rheumatological diseases are more difficult to identify because the antibodies are not always present when patients are tested.  It is usually a combination of signs, symptoms, and blood tests that give the diagnosis.  Whatever you call it, a connective tissue disease is just what it sounds like.  Any connective tissue in your body (skin, bones, ligaments, tendons, etc.) can be attacked and damaged.  Treatment is usually steroids, anti-inflammatory medications, anti malaria drugs, or immunosuppressants.  This is where things get complicated.  Steroids can greatly affect blood sugar so they are not recommended for diabetics.  Anti-inflammatory medications usually cause some sort of digestive reaction so celiac patients cannot use them.  It can cause ulcers, stomach bleeding, and even cancer.  Immunosuppressants can cause liver and kidney damage so they are not typically recommended for lupus patients or diabetics.  So I currently take an anti malaria medication.  I am not sure what the science behind it is, but it seems to slow symptoms and make them bearable.  Whew, I'm getting tired just laying this all out.  Hahaha

In the mix of all that I was diagnosed with an infection I mentioned yesterday called disseminated histoplasmosis.  Please read this whole paragraph.  I know what my initial reaction to the explanation was, and it was not pleasant.  Histoplasmosis is a fungus.  Mold and fungus spores fill our breathing air everyday.  We inhale these all the time.  Most often they are filtered out or the bodies immune system attacks them before we even know we've inhaled them.  Often time healthy people will get a cold or chest congestion for about 2 weeks if they get histoplasmosis, but the body deals with it.  In a person with a suppressed or compromised immune system it can be much worse.  The fungus gets inhaled into the lungs and begins to grow spores.  Eventually it spreads throughout the body, dissemination.  It is not contagious.  It can cause brain damage, lung problems, spinal problems, skin lesions, etc.  The treatment usually consists of a strong anti fungal taken for about 1 year.  There is a chance of relapse after the year of treatment, but that is rare.

We move on to the final diagnosis of Pernicious Anemia.  This apparently is when antibodies attack the lining of the stomach and prevent the body from absorbing vitamin B12.  B12 is important for the central nervous system.  We get b12 from animal products mostly.  With a deficiency, patients feel tired and weak.  They often have nausea and vomiting because the nerves are being damaged in the stomach lining.  With B12 injections, these symptoms usually disappear fairly quickly.  In times of high stress, whether it be physical or emotional (even excitement), it is recommended that patients increase their B12 to prevent symptoms from returning.

We are now currently awaiting an evaluation for yet another autoimmune disease.  Appointments are coming in the following weeks so I will fill you in as I get information.

To end on an inspiring note: I decided to call this "Antibody Ninja Girl" as an homage to my beautiful, amazing angel of a son.  He has a difficult time seeing his mother go through so much.  He feels helpless, but just wants to make things better.  He has taken on an very strong interest in super heroes.  To ease his anxiety about his environment he is constantly saving the world!  It is adorable, and he is certainly heroic.  If he believes super heroes can change the world, let's give it a shot.  These antibodies are like ninjas in the night sneaking in and destroying healthy tissue in my body.  We are out to end their destruction.  Join me in the fight.  Power to the people.  Hahaha ok that's a little dramatic, but you gotta laugh at the little things in life.  That's what makes it all worth while.

Here are some links for real information 

Hashimoto’s Disease  www.edocrine.niddk.nih.gov/pubs/hashimoto-thyroiditis.cfm

Type I Diabetes www.diabetes.org

Interstitial Cystitis  www.ichelp.org

Epilepsy  www.epilepsyfounation.org

Disseminated Histoplasmosis  www.mayoclinic.com/health/histoplasmosis/DS00517

Undifferentiated Connective Tissue Disease  www.hss.edu/conditions_14568.asp

Celiac Disease  www.celiac.org or www.digestive.niddk.nih.gov/ddiseases/pubs/celiac

Pernicious Anemia http://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/

Autoimmune diseases aarda.org