It has been a few years since I last posted. I really needed some support when I first starting going through this crazy journey of multiple illnesses stacking up on one another eventually being found to have APS Type II which is a fancy name for "my immune system prefers to attack me". I could find information on each disease. I could find blogs and stories of people who had theses diseases. But I could not find someone who had faced so much all at once. I could not see a light at the end of all these scary doctor appointments and tests and hospitalizations. I felt lost and alone, and understandably scared. I started this blog because it was what I was looking to find. I knew that there must be more people going through this, yet no one was talking.
 
   A few years into writing, and being very vulnerable, I was told by someone that the information I was sharing would be better put in a journal. I got another comment or two after that as well. It started to make me feel bad. Just two or three tiny statements had this enormous affect on me. I shut down. I no longer wanted to share my story. I read non-fiction all the time. I love learning the ins and outs of anybody's stories. I thought that if I shared I would help someone else. Then these statements made me feel as if I were doing something wrong.

   I started this blog with the intention of it eventually turning into a book. From the time I was first diagnosed with Type I Diabetes I was told I needed to write a book. As things played out for the next decade, the inquiries about a book kept flowing in. I continue to get encouraged to write a book. "It will help doctors." or "someone just like you needs this right now." or "it is so incredible, it is almost unbelievable." So, here I am again at my keyboard. Whether or not I ever turn my story into a book, I do not know. What I do know is, if I can impact someone I need to act.

   Without going back detail by detail, I just want to re-introduce myself. I am a 37 year old wife and mother. I grew up in rural NM. At the age of 12 or 13 I was diagnosed with Hashimoto's Thyroiditis. That is similar to having a slow thyroid except the thyroid is actually a goiter or inflamed. My father passed away from Type I Diabetes when I was very young. At the age of 20 I was found to have the disease as well. I was in college studying psychology at the time. My goal was to help special needs individuals. That diagnosis made me take a bit of a turn and I decided to also study nursing wanting to eventually become a diabetic educator. Suddenly I began to have another problem. This time it was interstitial cystitis. A condition that prevents your bladder from maintaining its mucus layer leading to ulcers and burns inside your bladder. I began medication and started to feel better. I was told, however, that fertility was going to be an issue. Not being married and only being 21, that information went in one ear and out the other. I did have a long term boyfriend, but I am a total Type A personality so babies were not on my mind.
 
   Jokes on me. I found out I was pregnant at 22. I was warned the pregnancy was not good. I continued my studies and had a healthy baby boy nine months later. Things seemed to be stabilizing. I had good blood sugar control and my thyroid medication was on point. I no longer needed my bladder medication because the IC had gone into remission. None of this stopped me from striving to reach my goal of a career in medicine. Until one fateful day my boyfriend, now husband, found me face down in the closet at 6am. I had had a seizure. Mind you, we thought we knew all of my health issues and epilepsy was not in the mix. The seizures became more frequent and continually unexplained. After about a year, we decided to move back to our rural hometown for a slower paced life hoping that would help. Unfortunately it didn't.

   As time went on the snowball rolled.  I was sent to the Mayo Clinic twice which only gave us a clear diagnosis of epilepsy. That made it necessary for more testing in our local region. I was found to have full blown Celiac disease which lead to a diagnosis of pernicious anemia, chronic atrophic gastritis, alkaline stomach, and gastroparesis. I was sent to a rheumatologist who diagnosed Lupus, but things still didn't seem right. To me or my doctors. I was sent to an immunologist. They found an array of allergies. Then suddenly, an answer.

   I was diagnosed with Schmidt's syndrome or Auto-immune Polyendocrine Syndrome Type II. That's a fancy way of saying I have an overactive immune system that is attacking my body in multiple places. This made the myriad of diagnoses come together. But as all diseases do, they progressed. I finally agreed to go to Johns-Hopkins University. From there we were told my stomach had come to a halt and I needed a device called a gastric stimulator to survive.

  Six weeks later we were in Dallas preparing for this new chapter. I got the stimulator implanted and began gaining a little strength and weight. My weight had gotten as low as 82 lbs. We spent four years in TX so I could be close to the doctors that implanted the device. Through those four years there were hospitalizations and a few bumps in the road, most of which are documented in previous posts. We eventually made the decision to move back to NM because I was becoming overwhelmed with being the patient, not feeling like a human. We chose a place on a major freeway so access to doctors would be easier because, let's face it, I do need monitoring. I also made sure there was someone nearby that could mange my stimulator.

   The past four years have played out fairly smooth compared to my roller coaster decade and a half prior. Things have progressed as most diseases do. My stomach is no longer really responding to the stimulator. The battery will last about a year or two more if I am lucky. At that point, I will have to decide whether to replace the battery or remove the device all together. Because it has been so long (2013) since it was implanted I am worried I do not remember what it felt like to live without it. Through a lot of long, hard talks with my husband I have decided to let it die. I will hopefully be mentally strong enough to leave the device in for two to three months nonfunctional. This may give me a better idea of how much of a difference the stimulator has on me. If I decide to live without it, we can then remove it.

   To be honest, my knee-jerk reaction is to take it out. The battery pack is under my skin in a pocket above the muscles. The leads go through the muscle to connect to the stomach. The battery pack takes up the entire left lower quadrant of my abdomen. For someone who is 5'3" on a good day and hangs out around 100 lbs right now, that is a lot of space. With my diabetes I have an insulin pump which is connected to the body by an infusion, similar to IV's except it is just in the fatty tissue not any veins. It needing to be in fatty tissue limits your sight options to the abdomen, love handles, buttocks, inner thighs, or back of the arm. A continuous glucose monitor, Dexcom, is also something that needs to be stuck into fatty tissue to read blood sugars through interstitial fluid in fatty tissue. All that being said, I have very little fat so I have my Dexcom on the right lower quadrant of my abdomen. That leaves the mini love handles for my pump infusions. The Dexcom and insulin pump infusions create scar tissue. Scar tissue does not absorb insulin properly and does not allow the Dexcom to have accurate numbers. We have tried other parts of my body, but these are the only places that work. Problem is, the scar tissue is building up and I have no where else to go. If I had that left lower quadrant of my abdomen available for my diabetes management devices it would help.

   The conundrum here is blood sugar versus nutrition and weight. With the paralysis of my stomach and the multitude of other digestive issues, food is not absorbed properly. This wreaks havoc on my blood sugar. A normal stomach pumps about 16-24 times per minute acting like a blender with your food and passing it on to the small intestine. If I am lucky, mine will do that in a day. Food does not travel consistently or fluidly. Sugar is absorb through your small intestine so not knowing when the food actually will get to the small intestine causes some issues when trying to manage my blood sugars. Add that to the scar tissue I have building up causing trouble with insulin absorption and diabetes management is nearly impossible. I do what I can with diet and exercise, but a gastroparesis diet is completely opposite of a diabetic diet.

   It is recommended that people get around 25 grams of fiber per day. Fat is ok, but best through plants and nuts. And protein recommendation is about 40 grams. Every body is different, this is just general. For diabetics, if you follow this diet with very little sugar you can be smooth sailing. Now for gastroparesis it is recommended to keep fiber less than 10 grams per day. Same goes for protein. And fat should stay around 5 grams per day. WHAT?! Yeah. Think about that one for a second. One egg is roughly 6 grams of protein. One slice of bread typically has anywhere from 2-5 grams of fat. A banana has about 3 grams of fiber. Now, imagine your typical day and your typical diet. Seems nearly impossible to meet all these bench marks or limits. There you have it. What would you do?

  This has just been a brief re-introducing of my health background. Let's remember, my health does not define me. Reading this is daunting and it all sounds depressing and scary. The truth is, you're right. But I am not living in a pity party. I still have a million blessings all around. I still have the crazy mom days. I still find a way to exercise EVERYDAY because I love it. It makes me feel better. It makes me happy. And it makes me feel proud and accomplished when I have conquered something. I love to read. I like crime shows and comedy specials and sports. My son is autistic and teaches me so much. We have a crazy little 9 month old Australian Shepherd mix who makes us laugh everyday.

   In an effort to not make this post any longer I will sign off for the day. My intention is to return to writing. I would love to share with you my antics, knowledge, health, and personal growth through this journey I call life. I will leave you with this little nugget. I have become friends (in my mind) with a health and fitness coach on YouTube named Caroline Jordan. She says "Smiling is an advanced move if you feel the need to kick it up a notch". I feel the need, ladies and gentlemen.

Epilepsy "invisible illness"

1. The illness I live with is: Epilepsy

2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2006

4. The biggest adjustment I’ve had to make is: getting used to the interruptions in life

5. Most people assume: I don't know that people have assumptions about seizure disorders

6. The hardest part about mornings are: they are about the same

7. My favorite medical TV show is: Grey's Anatomy, Mystery Diagnosis, House....I'm a medical info junky
8. A gadget I couldn’t live without is: My meter. And pump. And iPod- music makes the world a better place

9. The hardest part about nights are: the fear of having a nighttime seizure

10. Each day I take 12 pills & 8 vitamins: plus insulin

11. Regarding alternative treatments I: try to educate myself as much as possible

12. If I had to choose between an invisible illness or visible I would choose: neither, but if I had to chose I like that I can open up when I choose about invisible illnesses. Except when I have a seizure in front of people.

13. Regarding working and career: It is not entirely due to the seizure disorder, but I am disabled

14. People would be surprised to know: My symptoms started with my husband finding me passed out half dressed in our closet

15. The hardest thing to accept about my new reality has been: That it is not going away

16. Something I never thought I could do with my illness that I did was: have a driver's license

17. The commercials about my illness: rare

18. Something I really miss doing since I was diagnosed is: never waking up in the hospital

19. It was really hard to have to give up: A sense of control

20. A new hobby I have taken up since my diagnosis is: relaxation- what a thought!

21. If I could have one day of feeling normal again I would: feel free

22. My illness has taught me: How to appreciate the truly important things in life and not to be so superficial.

23. Want to know a secret? One thing people say that gets under my skin is: "You've been doing too much, haven't you?" (after I have had a grand mal)

24. But I love it when people: Just know I did not cause this

25. My favorite motto, scripture, quote that gets me through tough times is: Live for today, pray for tomorrow 

26. When someone is diagnosed I’d like to tell them: I'm sorry!  

 27. Something that has surprised me about living with an illness is: How painful it is the days following a seizure

28. The nicest thing someone did for me when I wasn’t feeling well was: Just spending time with me even when I am not the life of the party is the greatest gift.

29. I’m involved with Invisible Illness Week because: Well, it was back in July.  I just found this on a fellow blogger's sight and thought it was cool.  (see sixuntilme.com)

30. The fact that you read this list makes me feel: Happy that you may have a little more insight, and that you care!

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