Roller Coaster

Today I had my second appointment with my new rheumatologist. I like her. Dr. Banerjee. At my last appointment she spent a lot of time with my husband and me. She was very thorough and did a full exam and workup. I could tell the whole time that she had a suspicion about my tentative Undifferentiated Connective Tissue Disease diagnosis. I was hopeful because I hate the harsh medication: plaquenil- an anti-malarial med.

I went through the exam and tests. I accepted her referrals to a dermatologist and physical therapist. My skin is always irritated in one way or another so I would love some relief. The physical therapy I could give or take. It is for joint and muscle pain, but I have seen them before to no avail. My derm appointment is soon. I am ready to feel better with better treatment at the root of the issues.

At the appointment today I got some unsettling news. After going through my medical records/history and reviewing my lab results she does not feel there is any rheumatological disease. GOOD NEWS plus no plaquenil. But......some electrolyte levels we low; sodium and potassium. In addition to my skin irritation, hyperpigmentation, and symptoms mimicking lupus, she strongly feels there is adrenal insufficiency. That is Addison's disease. BAD NEWS.

Doctors have been dancing around this with me for years. It is part of APS Type II. But I am not ready for more tests. She suggested another skin biopsy, this time of the vasculitis on my hands. Last time I had one of the face that proved hyperpigmentation. She also is going to speak to my endocrinologist about further testing. I have been tested before, but there is more they can do.

I lost it. I broke down and cried in her office. Blubbering, telling her I was glad to be relieved of one diagnosis, I am just not ready for more. ....or more tests and waiting. I thought I could have a break for a little while. But I want to feel better.

On a happy note, today is my seven week birthday after surgery. So far, so good.

Anyone got a flashlight?

I am just going to let this be a venting session.  I have no agenda.  No particular topic in mind that needs to be discussed or addressed.  I just feel like I have completely lost myself in all that has gone on lately so I am doing a little soul searching or shall we call it "Lauren searching".  I remember being a funny, naive, innocent, ambitious, tenacious, giving, loving, honest, and positive person. That girl is stuck inside of me somewhere.

I recently had the privilege of speaking with someone who does energy work.  This is something similar to therapy, but also very different.  It is about centering the mind and body.  It's about balancing the energy in your body so that the positive energies can flow.  Granted, I am no expert so that is my very basic explanation.  Either way, the opportunity brought to my attention some things I hadn't realized about myself while also bringing to light or validating that which I did know about myself.  For some reason, however, by the end of the call I did not feel a sense of relief or calm, as many say they do.  But it did bring to my attention what things I may need to focus on to help balance me out.

You see, my health has been in turmoil for some time now.  Each time we (my family and I) feel like we gain some ground, it seems to knock something else off and the cycle starts again.  Right now, the most concerning issue is my digestion or lack thereof.  At this point, I am scheduled to see a specialist at Johns Hopkins in May.  I have been evaluated in Dallas for a gastric stimulator.  In the small town where I live, my primary care physician sold her practice to a nurse practitioner (not quite up to par for my situation), but has assured me that she is only semi-retired and will follow my case closely.  In the meantime, I am living on protein shakes, eggs, toast, and bananas.  I force down a semi-normal meal for lunch for the pure sake of feeling and tasting the food in my mouth.  I also allow myself one Zevia a day (an all natural diet soda).  All the while, I am still in pain on a daily basis, if not just plain nauseated.  I have to force my deprived body to exercise just to help move food along and to help maintain an appetite for the limited amount of food I do get to eat.

In my dreams I eat really unhealthy, hearty meals like cheeseburgers with fries and a chocolate milkshake.  I update my resume and apply for jobs as a psych nurse or a nutritionist.  I go for bike rides with my son in the New Mexico sun.  I make elaborate meals for my hard working husband.  I shampoo my carpets.  I give my dogs a bath.  I do all these things with so much joy.  Then, I wake up for a normal day, which should be joyful enough with the blessings I have.  Instead it is tainted with pain, fear, anxiety, and desire for respite.

I tell myself everyday, "Remember before you were this sick, as a child, you would hate getting up everyday for school.  You always felt tired and dreaded school.  Until you got up and got moving.  The days turned out fine.  This is the same thing.  It is just a new normal.  Be grateful for the joys and blessings." That's my intellect talking.  That's my logic and rational brain.  That same brain told me yesterday, as yesterday was the epitome of awful belly-wise, "What is this doing to your son?  He cannot come home from school and see you like this.  Not often.  He needs to know there is meaning and joy in the world.  If he sees his mother, a role-model, defeated and accepting defeat on the sofa with no makeup and a mess of hair, he will think this is the norm.  This will not be his norm.  He will lead a happy life with purpose and be grateful.  You have to instill that in him."  Unfortunately, the physical and emotional toll has run too high.

I can put on a good show.  I get around town independently for the most part.  I have responsibilities I take care of and follow through on.  I go to church.  I take a shower, do my make-up, style my hair, and brush my teeth.  I cannot wear fitted clothing because of the pressure it adds to my belly so my thin frame is usually in something casual, but I try to keep it nice and age appropriate.  But inside I am feeling like an out casted middle schooler who hasn't had a real meal or a good night's sleep in years.

The gastric stimulator is a possibility and seems to be my most viable option for better quality of life, but it is ultimately up to the doctors and insurance company.  When I read reports about other patients who got them, I was astonished by how close their stories were to my own. I was actually elated because many of them spoke of waking up from the procedure craving their favorite foods. It takes time for your system to be able to handle those foods, but within hours of the procedure relief is often felt.  Needless to say, this made me a little anxious to get the process started. 

I spoke with the doctor in Dallas today.  I saw him three weeks ago.  I called him last week because I had heard nothing, but he was still looking over things.  I called him today.  Surely a third week has given him time to look it over, consult, etc. When I saw him he said he generally turns people away for these stimulators, but that does not seem to be the case for me.  He kept all my medical records and said he needed some time to comb through them, to be thorough because my case is very complicated given the multiple comorbidities.  I appreciate and respect his time and attention to my delicate case.  Most doctors panic at the thought of my chart.

After relaying to the woman on the phone that I was curious about the status of my appointment because he still has my copies of my medical records and it has been three weeks with no news whatsoever.  She politely (she is very nice, as is the doctor) explained that "your case is a very complicated one..." that's where I started to tune out.  When she was done I simply said, "After three weeks I am still in the same position, if not worse than when I saw him, I would just like to know if this is even going to be a possibility for me or should I just bank on Johns Hopkins?"  She apologetically told me that he is still considering me a candidate and that's why he is still needing my information.  He just wants to be sure he doesn't rock the boat with everything that is going on inside my body.  She said she would let the doctor know I would like my records back (mostly because he has my allergy list and it is too long for me to remember, possibly leading to my increased pain) and that I was anxious.  I asked her to just let him know I am anxious to enjoy life with my seven year old.

And so I have no choice but to wait.  Intellectually, logically, rationally I know that this doctor is doing his absolute best to insure I get the best treatment.  I know that Johns Hopkins is an amazing facility and the specialist I am scheduled to see has some amazing credentials.  I know that I am on a path to respite.  I know that I am a fighter or I would not have made it this far.  I know that there is meaning and purpose to life.  I know that I am blessed to have my son, husband, a roof over our heads, clothes, and some little luxuries.  I know I am blessed to have my in-laws near to help at the drop of a hat.  I know that God has a plan and is carrying me through these trying times.  The truth is, I don't feel like myself anymore.

I feel lost.  I feel desperate.  I feel deprived.  I feel guilty for the burden it adds to my family.  I feel guilty I cannot be the mother, friend, wife, daughter, sister that I once was and strive to be.  I feel angry- if I hear one more time how "complicated" my case is, I swear I will slap someone (completely out of character).  I am also angry that things aren't moving along faster.  Did I wait too long to complain enough for someone to realize I was serious?  I feel saddened by the fact that this has consumed me.  I thought I was above that for some reason.  I thought I could conquer anything and nothing could hold me down.  This, this APS Type II, these multiple auto-immunities, this daily torture of lack of food or painful ingestion/digestion of food, this daily grind, this regimen, this has consumed me.

I talk to my husband.  I talk to my family members.  I occasionally talk to a friend.  You know, with every person there is something different you can share.  With some you feel comfortable laying it all out there.  With others it is more difficult to be open.  I can honestly say I have not told one person everything.  I have not been completely open with anyone.  I don't feel like I can.  It has gotten to this place of such despair that it is easier not to talk about it.  Yet, it is consuming me.  It is bringing me down and keeping me in this dark place.  I decided a long time ago I would always pick myself up.  I promised myself I would never allow myself to go so far in to the dark I could not find my way out.
Anyone got a flashlight?  

Worry Wart

Over the past several years this giant snowball has seeemed to engulf my life.  More recently, particularly the past year or so, this snowball has begun to overpower me.  I've brushed it off, pushed it under the rug, beaten it down, ignored it, and tried to look at everyday as a new chance to shake it off for good.  To my own dismay, nothing has helped.  So now, I turn to you, oh powerful blog..........to air it all out and hope the release will spark change.

I wouldn't normally "air my dirty laundry" for the whole world to see.  I am beginning to understand that those of you out there who read my blog are generally people who are important to me and/or going through something so similar, judgement is never an issue......and I suppose if it is, my ignorance is bliss.  I don't have enough money for a therapist.  A journal is a good outlet and much cheaper.  A blog is somewhat of a combination.  Although, there may or may not be professionals reading it and offering up advice, a release coupled with the potential of a comment coming in with a perspective I cannot currently see may be more beneficial than thousands spent at a therapist.

I have been to therapists in the past.  I have always been told I have good coping skills.  I went to school for psychology and was stopped short 11 months before completing my bachelors.  (That is a goal I intend to keep and complete when I am able!)  I know a little about how the brain and emotions work.  Very little; nonetheless, I have a background.

I am a stay at home mom and so I have plenty of time for introspection.  I work my rear off with doctor appointments, insurance dealings, volunteering, and being a mom, but it is all done solo.  For a while, literally up until today, I thought I suffered from anxiety and depression.  I have been on medications for this in the past, but I prefer not to take medication.  It was first brought to my attention in my mid teens.  I mentioned to a professional that fights, whether physical or verbal, terrify me and always have.  I do not have to be involved in the fight.  It doesn't even have to have anything to do with me.  The outcome could have no effect on my life whatsoever, but when I see or hear people fighting I go into panic mode.  That opened a can of worms that could never be contained.  I was dubbed a sufferer of social/general anxiety as well as depression based on what my parents told the professionals and placed on medication.

As the years passed, I saw several different doctors and therapists and went on and off several different treatments.  Of course, as I got older the anxiety tended to fade a little (maybe it is better to say it got redistributed).  The things that would terrify me then no longer terrify me, but I have a whole new set of worries.  I never liked the medication.  It would take away my symptoms, but it would also numb me out completely.  I couldn't feel the good feelings or the bad feelings.  I was usually the one who initiated the termination of treatment time and time again.

Once I was sent to the Mayo Clinic and these diagnoses of these chronic, autoimmune diseases started rolling in, I started to notice that a lot of what I complained about as a child that probably motivated my parents to continue to seek help for me was more likely due to these illnesses not a mental or chemical imbalance.  Many symptoms have been explained away or treated as each disease has been diagnosed.  Along with any chronic illness diagnosis, chemically imbalanced mind or not, comes anxiety and fear.  If a major life change is caused by the diagnosis, it can also lead to depression.  As I was moving further and further away from the anxiety sufferer and falling into a chronic illness sufferer.........some where along the way the two collided.

I have to be honest, losing so much of (what I thought was) myself sent me into a grieving process.  Many people don't realize that making a life change of any nature requires you to grieve the loss of the old life.  Often, with illness, the person actually does grieve the loss of themselves on a path to finding their "new self" or new comfort.  The last 4 years has been me meandering in and out of depressed states.  I'd like to think that I am not a depresssed person because so much of what a clinically depressed person suffers with, I do not.  I do not want to take away from or discredit the real sufferers of clinical depression.  Just like diabetes or lupus, it is a real medical condition with some serious complications.  Clinical depression just does not seem to fit the bill for me.

I avoid telling my medical doctors when I am frustrated or down because they immediately jump to medication.  Most anxiety medications are also anti-depressants.  When a doctor hears I am having a hard time, their first thought is an anti-depressant.  I hate these medications.  I will do anything and everything I can to avoid them.  The truth is that it is hard.  All of it is hard.  Life is hard in general, but add these diseases on top and this juggling act becomes incredible.  Who in the world could deal with it all without ever feeling overwhelmed?!  My guess is, not a single soul.  Does that make me weak or "imbalanced" just because I am having a natural reaction?  While it is a negative reaction, it is still a natural response.  My thinking is, that is healthy.  It would be of concern if I floated through these trials without so much as a grimace.  So why the need for "help" with these medications?  Especially, when the negative feelings are not interfering with my daily life and are not lasting weeks or months on end.

I was out for my morning walk this morning and it hit me like a ton of bricks.  It is not depression per se' that is making me feel this way or that I need help with; it is anxiety.  I have been explaining to my husband recently that the world is beginning to frighten me.  Every where I turn there is a danger or a contaminate or a risk for myself.  Every step I take, every move I make, a complication could occur.  This is starting to affect my daily life. 

Let's go into this a little deeper, if you will.  When I was diagnosed with Type I Diabetes I remember the fear. I had Hashimoto's for about 7 years at that point, but symptoms were easily controlled and stability was easily reached.  No fear necessary.  As I have said before, my own father passed away from complications at the young age of 35.  That has never left my mind.  Then I was diagnosed with interstitial cystitis.  I had to pay attention to everything that went into my mouth as well as how much of it to help stabilize and control the symptoms for each.  Sleep, stress, excitement, sex, infection, exercise, etc. affected each.  After a few years, I fell into a grove.  It didn't stop there, though.

I never felt well.  I assumed that living with these illnesses was hard plus my plate was full with school and work and eventually a new son.  Then, the seizures started and progressed steadily.  I was finally sent to the Mayo Clinic.  That was traumatizing because I had only heard of lost cases going to the Mayo Clinic so I thought I was dying at the age of 25.  The seizures were treated, but no other explanation found for all my symptoms.  I was sent home knowing my journey was not anywhere near being over.  Gradually, we started getting answers. 

Celiac disease.  That means cutting wheat, rye, barley, and oats out of your diet as well as be aware of cross contamination when eating outside of your home.  Initially, this terrified me and infuriated me, but I read a lot of books.  I educated myself as much as possible to make this change as easy as possible.  The unfortunate part about it, I discovered I was one of the lucky one's that feels cross contamination within minutes and the symptoms do not let up for hours if not days depending on the severity and other factors.  Imagine digesting broken glass.  It is a painful, ripping and tearing sensation combined with cramping, nausea, diarrhea, constipation, etc.  Any uncomfortable stomach upset symptom, I get it.  I sometimes even get headaches and joint pains along with all of that.  When people ask why I don't cheat I ask them "Would you rather eat that piece of bread and wake up with the worst hangover you have ever had or just look at it longingly? I choose the latter". 

Undifferentiated Connective Tissue Disease.  So much of the treatment for this disease has to do with reducing inflammation.  To reduce inflammation they generally use steroids or NSAID's (non-steroidal anti-inflammatory drugs).  Steroids raise your blood sugar to dangerous levels.  Doctors advise against this treatment in diabetics, unless the benefits out-weigh the risks which is rare.  NSAID's are rough on your stomach.  Not only that, they thin your blood so they are dangerous for people with ulcers.  Celiac disease causes damage in the small intestine lining, sometimes going all the way through the intestine wall, so NSAID's are not recommended for patients with Celiac disease.  It can cause internal bleeding.  Our only option was an anti-malaria drug.  I do not know the science behind how it works, but somehow it does.  In the rare case I suffer a flare up, I dread the steroids necessary.  In addition to the threat of an anti-inflammatory drug, steroids leave a patient more susceptible to infection (which for myself, the danger is already grave), can cause bone loss (which for myself is already a concern due to malabsorption), and can trick the adrenal glands into thinking they no longer need to work which is a disease called Addison's.  My doctors have been on high alert for Addison's since 2009 based on symptoms and the progression of the other illnesses.  All of which seems like a ticking time bomb to me.

In the fall of 2011 I was finally seen by a gastroenterologist for all the stomache issues I had complained about for years.  Once they Celiac disease was diagnosed and treated then found to be stable based on blood tests, there was no explanation for my continuing symptoms on a daily basis.  I was literally not digesting food or absorbing it.  I spent the majority of my time for many months in bed, in pain, and very weak.  Over this past year it has been discovered slowly that I have pernicious anemia, chronic atrophic gastritis, colitis, proctitis, and lastly gastroparesis.  In layman's terms that means my immune system is eating away at the lining of my stomach causing ulcers and malabsorption.  My stomach produces no acid which is as bad as having too much acid.  This causes messages to get lost so my pancreas does not produce digestive enzymes.  The undigested or imporperly digested food then tears up my colon.  There is some immune reaction in the colon as well, but no definitive terms other than those I previously stated.  As you can imagine, this adds a whole other level to the Jenga game we have going on here. 

Food is a source of contention for me.  I am a Type I Diabetic on an insulin pump (plus I am human) so food is a necessity!  Due to the Celiac disease and the diabetes my options are pretty limited.  Add to that the digestive issues and we have to cut out even more.  Proteins and fats are the hardest things to process and fiber is too bulky.  I am limited to soft foods that are easy to digest, often liquids.  I have to find the things with the highest nutrtional value in the smallest package to insure I am getting everything I need.  Almost like getting gastric bypass without the gastric bypass.  Plus, I had to stop running because it was too much for my body and my digestive system.  I turned to alternating walking my dogs and yoga.  Running was my passion.  And still, it didn't stop there.

I was sent to an immunologist because it was becoming apparent that my immune system was very confused about its job description.  At this point everything but the seizures were being caused by an autoimmune response.  Plus, I had the rare disseminated histoplasmosis infection in 2009.  The immunologist diagnosed my Autoimmune Polyendocrine Syndrome Type II based on blood tests and symptoms and history.  He also discovered several allergies.  Everything from cats, mold, and pecan to grass, mulberry trees, and cedar.  They started me on allergy shots shortly thereafter, but warned the shots are only to help strengthen the body but they do not eliminate the threat of the allergen.  I was prescribed an epipen and told to avoid my allergens as much as possible because my immune system is in such high alert all the time.

At that point, I started feeling like the girl in the bubble.  It was explained to me that as long as my immune system is in attack mode, it will continue to do just that.  It obviously is confused as to what is foreign and what is not so the idea is to avoid as much of the dangers that we know about as possible to try to prevent further progression of APS Type II.  By the spring, I started to fall into a grove and by early to mid summer I hit stability, like many of my doctors had been hoping for across the board for years. 

Like anybody else in this world, I am not immune to everyday struggles, trials, and tribulation.  I had my own set of personal mishaps over the summer and into this fall.  These more recent neurological episodes are our new mystery to solve.  As I wait for these appointments to come and wonder what the outcome will be.  I wonder if we will get any answers or just more questions.  I wonder if relief for my headaches and disorientation will come soon. 

Last week I was washing dishes and a glass began to fall.  I went to catch it before it fell into the stainless steel sink, but my reaction time was not fast enough.  I ended up tearing up my ring finger on my left hand.  I had to go get it treated at the Emergency Room.  I hate the hospital in general, so I was even more irritated that I was there for something as mundane as a glass cut.  Trying to not make a big fuss over it, I declined the numbing of the wound before they fixed it up so the whole experience was ridiculously traumatizing.  A week later I still am unable to get the finger wet or use it.  I usually take my dogs when I walk (we have two), but I cannot hold a leash so I cannot take them.  It would just be cruel to take one and not the other.  Of course, I cannot do yoga.  It's amazing how much you use that one finger.  The week has been a little rough.  Not to mention how badly it hurts. 

So, as I was walking this morning, irritated because I wanted to take my dogs.  Irritated because I'd rather do yoga since I have been deprived of it for a week now.  Then I thought, "Everything I enjoy gets taken away from me!" As I talked myself down from that negativity, reminding myself the finger injury is only temporary, that's when the light clicked on.  I was starting to beat myself up over being depressed when I realized, it is not depression at all.  I have the mindset to walk myself out of that hole.  I have the mindset to see the positive in all the negative.  That's not the mind of a depressed person.  Often, clinically depress can not even fathom positive thoughts.  They do not see a light at the end of a tunnel or any hope.  The anxiety of my fears is crippling me.  As that thought came into my head, I started to examine recent events and my reaction to them.  I started to notice just how badly the anxiety may be affecting me. 

I am low on energy as it is.  I prefer to utilize the energy I have for my son and husband.  They are my priorities and therefore they deserve my best.  My second priority is exercise.  Without exercise, digestion, stress, and energy would be huge concerns.  Exercise gives me more energy.  It loosens my joints and muscles with lubrication and blood flow.  It allows me this time to myself to just be me, and that is a huge stress reliever.  Without exercise, it seems as if nothing moves inside my belly.  Of course, exercise stabilizes blood sugar.  All other energy just trickles down.  If I have enough energy for fun with friends or family, I'll take advantage.  Usually, the latter is what suffers the most.

I have noticed, moreso lately, that I haven't had a whole lot of energy left over for extra fun.  I have declined invitations by friends for many things.  Partly and mostly due to the fact that I do not feel well enough to get out and do something.  Many times it is because I am just zapped completely of energy.  While thinking back, I think anxiety has a lot to do with my lower than normal energy lately.  I am so consumed by what may attack me next or what may be affected by external factors I cannot control, I have resorted to staying in my bubble as much as possible. 

Spontaneity is not in my vocabulary currently.  I have so many medications, diet restrictions, and physical limitations that picking up at a moment's notice is nearly impossible.  If I do not have food prepared, I cannot just walk in to any grocery store or fast food restaurant and order something.  Believe it or not I have been contaminated many times from just ordering a fountain drink.  These restaurants are full of contaminating foods.  Most packaged food has some sort of preservative or chemical or gluten that I cannot eat.  My diet consists mostly all natural, whole foods.  That's hard to get on the go.  I need to be close to my insulin and testing supplies as well as my emergency medical devices.  Although, many of this stuff comes in a portable form, I would need a suitcase rather than a purse to carry it all with me at all times. 

The shear totality of what I face on a daily basis and the fact that I am completely competent and aware of it all leads to some overwhelming feelings.  I tell my husband from time to time, I wish I didn't understand it all so well or that my awareness will fade a bit.  I am already a bit of an introvert.  I have always been a bit of a worrier so I guess that would classified as anxious.  Pile on all these illnesses, their complications and their treatments, I've got myself in a bit of a beautiful disaster waiting to happen. 

I move on to thinking (as my problem-solving, take the bull by the horns mind works) how do I fix this?  I do not have money for a therapist nor have I ever felt like they help.  I do not want to be classified as depressed considering I am grateful for the gifts in my life and see them on a daily basis.  I do not want to burden friends and family with these thoughts.  They run through my head continuously.  If I were a friend or family member of myself, I would run at the thought of constant complaining or worrying.  We all have things to worry about.  What makes me different?  Different worries, of course, but my worries are no more important than the rest I would assume.  How do I tell myself to have faith in God's plan and stop sweating the mall stuff?  How do I tell my heart to listen to my head?

And with that, I end this.  It is long enough to begin with, but really how much deeper can we get into worrying and anxiety?  All the worrying in the world never fixed any crisis.  Worrying has never solved any problem.  Anxiety seems useful in a dangerous situation, but to have that "fight or flight" response on a constant basis is exhausting and seemingly useless.    

Open

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.