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Nearly 6 weeks into school and I am just getting back to blogging.  If I were my own follower, I would be disappointed with myself for being so erratic about posts.  I tell myself every time I add a new post that I will be more diligent about making this more consistent and easy to follow.  So far, I have failed at my attempts to better my posts. 

On a daily basis I think, "What topic could I make a new post about?" Honestly, I have zillions of ideas running through my head all the time.  I started this blog to share my daily joys and struggles of dealing with multiple autoimmune diseases.  It was prompted by all the questions from family and friends, even strangers, about what I go through.  I felt like I was a recorded cassette tape replaying over and over.  I also felt like when I didn't want to replay the tape and would pass out condensed versions of my story I was judged.  We are all judged, but I felt like I had to continually defend myself.  On the outside I look like a seemingly normal late 20s girl so imagine the looks I would get when I would have to turn down an invitation to a gathering or decline helping out my son's class on a field trip. 

Those closest to me would compliment my strength.  They would compliment my knowledge of my own situation.  So many patients rely solely on the professionals to handle their conditions whereas I, on the other hand, look at the professionals as human beings.  All human beings make mistakes.  All human beings overlook things, including myself.  I have always believed this needs to be a team effort and I have to be fully invested in my own health.  To be invested you must know what is going on.  With all of that said, I have been told numerous times to write a book.  A book about my experiences.  A book about how I wake up everyday and decide to continue fighting.  A book about how twisted the government is....about how twisted the health care system is....about how easily we can all get lost in the shuffle.

Well, I am not a writer.  I have never thought of myself as a writer.  English and literature were my least favorite subjects in school.  So that whole idea seemed not only ridiculous, but impossible.  My solution- start a blog.  I knew that the best way to write an essay, say for a college course, was by starting with an outline.  Due to my lack of confidence in the area of writing, a outline began looking about as successful as a book.  A blog, however, is like a journal.  My mind would like to keep it in the confines of a journal, but the reality is, it is a journal for the entire world to view (if they choose).  This, I thought, will solve two dilemmas.  One, in time, it can serve as an outline for a potential book....if I ever decide to write one or think one is warranted. And two, it can serve as my defense. I figured, I will no longer feel the need to defend myself because all the information is now out there.  It is up to the "judger" or "questioner" to seek it out if it is that important for them to know.  Kill two birds with one stone and pressure is taken off of my shoulders.

So far, I feel like it has been meeting both my original goals.  It also has acted as a journal, allowing me to release thoughts and feelings I would not normally openly talk about.  Here's where I have run into a problem.

I am a pretty positive, strong, and resilient person.  I tend to see the glass as half full.  I usually find peace in difficult situations knowing there is a reason for everything.  If there is bad, there MUST be good.  No bad situation is completely bad.  I believe the tough situations are tools for making you stronger.  I prefer to see the good in people.  Behind every smile or grimace is a story I don't know and probably wouldn't understand so who am I to cast judgement?  If you always give it your best than you will never have regrets.  I also believe that every person deserves respect.  We all have feelings, so respect what you do not understand.  Educate yourself, but knowledge is not equivalent to your place in the world.  Alas, I am human.  The down times get me.

I have been finding that the easiest things to write about are the hardest things to talk about.  When I say 'the hardest things to talk about' I don't necessarily mean that it is difficult for me to open my mouth and talk about it.  I mean, it starts to feel like there are certain things no one around me wants to listen to.  That is the feeling I get.  My mind is telling me, it is not so much that they do not want to hear these things, they may not understand or even fully grasp where it is coming from.  Or, I imagine if I were on the other side of my life.  If I were my husband, or my sister, or my best friend and every time I contacted myself all I heard was what went wrong today, what the doctors are planning next, how this med affects me or that one does.  That symptom is gone, but now I have this or I'm exhausted (again).  I would get so tired of myself.  So, I force myself to try my hardest not to acknowledge my physical struggle.  I try not to burden those around me with so much negative so that they will continue to want to come around me.  Then, I find I have nothing to talk about.

I am disabled.  I have been legally since 2009.  I officially gave into the label and allowed myself to slow down and actually quit work in 2011.  I have one 6 year old little boy.  We live in a small town in southeastern New Mexico that is definitely off the beaten track.  I have very little extra curricular activities outside of my home because just maintaining my health and my home are about all I can fit on my plate.  My son is the main focus of my life.  As long as I am on this earth and have the gift of being a stay at home mom, I want to make sure he feels like he is safe, loved, and secure. 

I was a college student before all of this consumed my life.  I started college with the intention of majoring in psychology and working in abnormal psychology.  That was inspired by an aunt my husband has who was born with down syndrome.  She is amazing and I wanted nothing more than to deal with that everyday for the rest of my life.  In college I was diagnosed with Type I Diabetes and my plan changed a little.  I still wanted the psychology degree because I knew it would be immensely helpful for someone with a chronic illness, but now I wanted to be a diabetic educator.

Before being diagnosed, I thought I was a fairly healthy person.  My own father passed away due to complications of diabetes when I was 4 almost 5 years old.  I had spent my life trying to avoid the disease.  I was an athlete.  I stayed clear of fried foods and only had sugary items moderately.  I never drank juice or soda unless it was diet.  Little did I know!!  My first appointment with my diabetic educator floored me.  There was so little I knew about food and how it affects our bodies.  With that, I was so overwhelmed by the lifestyle changes I would have to make.  Here I was thinking I was in a good position to treat this disease and I had no idea at all.  I thought about people who had never been exposed to the disease and how gut wrenching it must be for them to have to learn to deal with a diagnosis like mine.  I wanted to be a diabetic educator and possibly a patient advocate.

I changed majors and started working on courses for nursing.  My plan then was to get my RN as well as a BS in psychology, thinking they would go hand in hand with my ultimate goal.  Along the way, life intervened and I had my son.  I needed stable money and benefits to support a child, and I was not going to marry my high school boyfriend based off a pregnancy.  I quickly bundled the credits I had and with a few additional courses completed an Associates Degree in Liberal Arts.  Then I moved on to a vocational school to become a medical assistant.  My thought was to work as an MA while my son was a infant and toddler, then finish out my double major once he started kindergarten.

I did just that.  I was feeling so accomplished, so strong, and yet so worn down.  I kept telling myself it was all the work I was putting in, but I had to keep going to reach my goal.  Once I got to where I wanted to be, things would slow down a bit and I could enjoy it.  I had no idea all this was just below the surface.

It got to the point where it was so hard physically, I knew something had to give.  By then (about 2 years into it) I was married to my high school sweetheart (for love not pregnancy- I'm strong headed haha) and we decided to move home to our small town to have the support of our friends and family as well as the slower paced life.  My son was 2 so I was still waiting for him to start school before I went back to college to finish out my goals.  I worked as an MA for 11 months before everything erupted.

I absolutely loved every aspect of my job.  It was only more invigorating thinking of where I would be going and what I would be learning in the years to come.  I rarely dreaded going to work.  I would get tired, of course, and every job has its downfalls.  But this was my passion.  I fought tooth and nail with every fiber of my being to never let it go.  Alas, God had other plans.

So here we are 4 years later.  I have 7 new diagnoses under my belt, a pharmacy on my nightstand, far more symptoms, legally disabled, but blessed to be a stay at home mom.  We bought a house in our lovely little town that owns my heart.  My husband also changed his path.  His ultimate goal of becoming a pharmacist was halted, but he became a pharmacy tech which allows him to work within his passion even if it is not what he originally set out to do.  (Really, how many people end up doing what they planned?! not many)  We have a similar life to what we set out to achieve all those years ago when we packed our bags and headed to college, but it is a life so much sweeter than either of us imagined.

And that brings me back to this blog.  We have so much to be thankful for and so many things happen every day that make us smile.  With all this hardship we have to face, we still have so much joy.  For some reason, though, all I want to do when I get to my blog is pour my heart out about all the symptoms I don't tell those around me.  All I want to do is break down and tell you how hard this all is and how angry I am when no one around me seems to understand.  All I want to do is report all the things the doctors have told me.  I want to talk about how it frightens me and the dark places it sends me.  I want to complain so badly!!

What holds me back you ask?  I have been asked that by a therapist once or twice, and my answer is always the same.  WHY?!  What good does complaining do other than perpetuate the negative thoughts?  I am afraid if I open up and allow myself to do that it will be like a floodgate that I cannot control.  Not only that, I hate when I hear people complain about things when I am looking at their situation longingly.  I wonder, do they not see the whole picture?  Can't they see this could be a good thing?  Or what about the parts of it they are not looking at?  I guess in that sense, I do judge people.  Do I see it as a weakness?  Possibly.  Do I see it at an attention getter?  Absolutely!  And that is the kind of attention I do not want.

I am not in search of sympathy.  I feel like sympathy only gives me the allowance to feel sorry for myself.  And, really, what kind of a life would I lead if I was constantly feeling self pity?  I also don't need the pity.  Do you know how many wonderful things I have going on?  I have an amazing husband who is also an amazing father.  I have a beautiful son with a beautiful soul.  We have a roof over a heads, food on our table, and a steady paycheck.  We may not be wealthy or even super comfortable, but we are taken care of.  I still have my mobility.  Other than an insulin pump I am not connected to any device throughout the day.  I am mostly independent.  Only on bad days does someone absolutely have to check in on me.  We live in a nice town and have a good support system.  I have an amazing group of friends.  The sun rises every morning.  No need for pity or self pity in this life. 

The attention I seek with this blog is knowledge....guidance....perspective.  In the position I am in it is so easy to get isolated.  Not only am I already an introvert, but there is so much I feel no one will understand or want to hear.  Not only do my limitations isolate me from gatherings for a number of different reasons, but my fear of being judged keeps me isolated.  The misunderstandings about my situation seem to only overwhelm me.  I find peace in knowing that President John F. Kennedy dealt with many of the issues I have, but he is no longer with us.

I have never met or even spoken with anyone who deals with APS Type 2 or any of the underlying autoimmune diseases.  In the time of JFK medicine is not what it is today so he was looked at in a completely different light.  He also had money.  A great deal of money can aid in disguising a disease or getting exceptional treatment.  I am amazed at the work he was able to do.  I am astonished at the stress level he was able to endure.  I have so many questions, and I look for a role model.  It always feels a little more comfortable to walk a path someone else has forged.

With that I will end today.  I end with the hope that someone out there will connect.  I end with the hope that my own heart and mind will allow me to open up enough to heal inside but not enough to open floodgates.  I end with the hope that the constant feeling of uncertainty is replaced with peace of mind knowing it will all be OK, even if I do not know how the story will go.