Tuesday, October 30, 2012

Unthinkable

Words cannot even begin to describe how I feel right now.  Life is beautiful.  The human body is miraculous in its ability to keep even the most minute pieces of a puzzle in place to sustain life.  Within that, humans are given a brain and cognition that all combine to create a person.  A person with a spirit, mind, body, personality, and light.  But, this miracle is fragile. 

Today an integral part of our family was taken home to be with the Lord.  He was my uncle.  He was the third of six siblings in a rambunctious family born in the fifties.  In a big way, he was the glue that held us all together when life takes its toll and slowly takes away the foundation. 

The siblings began having children in the seventies and eighties.  This only enlarged the family.  Throughout is all they stayed close, always returning home.  As the world goes, with such a large family, we began to lose members slowly throughout the years; whether it be to illness, tragedy, accident, what-have-you.  The young, the old.  None of us were immune.  He was always there.

He lived a good life and made a huge impression on anyone he met.  I currently live in my family's hometown and nearly on a daily basis I get asked about him specifically because he is so memorable.  He was loud, outgoing, fearless, carefree, and an amazing athlete.....not to mention a bit of a charmer.  He dealt with his own set of trials throughout.

As a young adult he married a wonderful woman.  They had a beautiful daughter that was the center of their world.  Unfortunately, he lost his love to cancer.  As a young child, watching him with my cousin, I always thought how difficult it must have been to go through something so awful.  My heart just prayed they would one day find peace in it all.  Even though I was so young and not much was shared with me, my heart always wished the two of them hadn't gone through losing a mom and a wife.  But, he loved his daughter and faced the world head on.

Part of the humor I find in my memories of my uncle was this stream of woman years after the loss of his wife.  He always had a trophy by his side.  It never surprised me because people adored him.  As did all us cousins (minus the romance of course).  Everyone wanted to be around him.  One visit in particular that sticks out in my mind, we went to pick him up at the airport for some family gathering.  I was very young, still in elementary school, but I had a clear understanding of how charming and full of life my uncle was.  The trip to the airport was about 2 to 3 hours and I was excited the whole way.  When we got there, my uncle had in tow a beautiful blond woman with a matching track outfit on.  You know, the one's from the early nineties that were plastic with loud colors.  (When I told her this story, she tells me it was his idea for the matching outfits....and that is just like him)  My first thought was, "Here we go again."  That trip back from the airport, I quickly realized I really liked this woman.  I could also see my uncle saw her differently as well.  Soon after that, she became his wife.  

I remember being so happy that my uncle had found love again and that my cousin would have a mother figure around.  Nothing can replace your mother, but growing up with only a man to turn to for advice must be difficult no matter how much love there is.  My new aunt, who never seemed "new" to me, had three kids of her own.  They happened to be around my age, which only heightened my excitement because I was the youngest cousin at the time and always felt left out.  My uncle and my aunt blended this family together with their amazing love.  I'm not trying to paint this pretty picture of butterflies and roses.  All families have their own set of obstacles, but the love was undeniable between parents and children.

Our family has always been so large and continued to grow as the grandchildren began having kids.  Throughout it all we all stayed as close as possible living only one or two states away from each other, we all returned home for family gatherings.  As the years past, as they always do, my grandparents were taken from us and my uncle lost a sibling.  In all of it, he had his own struggles with a blended family, teenage daughters, life......he always stayed positive.  He always found joy or humor in everything.  He always pushed through with a determination as if the worst case scenario wasn't even a factor.  That was something that drew so many of us to him.  That combined with his love.

He loved his family with everything he had in him.  A mother, a father, a daughter, a wife, three additional children, brothers, a sister, nieces, nephews, soon a grandson, add in two son in laws, granddaughters to follow and not to mention the countless lifelong friends, coworkers, colleagues, acquaintances, etc.  This man loved us all and we all knew how deep the love went.

About six years ago (don't quote me), I got a call from my parents giving me the news that my uncle had cancer.  Forgive me now, it has all been overwhelming, so I cannot recall the specific type of cancer.  I was devastated.  My uncle was always the picture of health to me, but not only that, his spirit was so big, it just didn't seem possible.  At the time, I worked as a medical assistant.  I took the information to the doctor I worked for and asked him to explain it to me.  He was reluctant, but I kept pushing.  Finally, he took me to his office and got on his computer.  He also pulled out some books.  He went over all the information of this type of cancer with me, and it floored me.  When my parents told me, things were so new, we were not sure we had all the right information.  I went into denial.  I figured everything the doctor I worked for had gone over with me was useless information.  It was scary and there was no way my uncle, who was so vital and vibrant, could be suffering from that.

Not too long after that, I started getting calls from my uncle urging me to get help for my ailments.  I had been dealing with symptoms and frightening episodes for a couple years and he wanted me to get treated or at least evaluated.  I argued with him all the time.  I was too young.  I was working too hard.  I was a new mom.  He was being overbearing and making a big deal out of nothing.  One day, as I was driving to work, my uncle's doctor called me.  Imagine the look on my face and thoughts going through my head.  The gentleman spoke with me in detail about my diabetes and the symptoms I was having.  He recommended disability.  He urged me to look at the whole picture because it was more serious than I was treating it.  He even offered to help in any way if I decided I wasn't going to push back anymore.  I thought about it for a few days, and the whole time I was amazed that my uncle was going through testing and who knows what else for a form of cancer and he was worried about little ol' me.

Of course, after some time and continued urging, I followed my uncle's advice.  As soon as I did, he jumped on board.  He gathered anyone he knew who could help to get me, my husband, and son in a situation for me to start getting better.  These past four years with diagnosis after diagnosis for me, he has been there every step of the way.  Sometimes, even living 8 hours away, popping up at my door just to check on me while he was in town.  All this time, he was dealing with his diagnosis and all that it entailed.  Never once did he complain or show any signs of weakness.

I remember many nights crying to my husband in fear that we would lose him.  I didn't understand the diagnosis they had given my uncle.  As you can tell, with me giving no details, I still don't understand it in totality.  Which is so not like me.  I am an information junkie, and I feel that information gives you power.  If I cannot fix something, I will learn about it until I find a way.  Something about my uncle being ill and it being so fragile was so overwhelming, I believe I was in denial because not a single piece of useful information stuck in my brain.  I just knew he was very ill and I was terribly worried, but he was my uncle, the rock, nothing would take him.

When treatments started getting more intense, I would call to let him know I was thinking about him.  I also wanted details.  I wanted to know he was going to be alright.  He would never allow the conversation to be focused on him.  I would call and ask if he was OK.  His answer was always, "I'm doing great, darlin'.  How are you?"  I'd try the same trick and push again for him to lean on me, but he wouldn't take it.  He was concerned with me.  He would give me advice and tell me what doctors to call or what he thought I should do for my own health and well being.  He always asked about my son and my husband.  Then, we would leave the conversation with an "I love you."

That did the job.  He would calm my nerves enough.  My denial would only solidify with his upbeat, positive, and lively personality.  I know my illnesses changed me a lot so I began to assume that if he wasn't affected by this illness, I shouldn't be scared for him.  The fear was always in the back of my mind, but I would always tell myself that the cycle of life takes us all.  I never believed this would take my uncle.

He raised his daughter.  That in itself is an honor many men take for granted or completely disregard.  He loved with everything he had.  He found his perfect match in life.  He helped raise her kids as his own.  All the dysfunction, trials, and tribulations never broke him or backed him away from loving his family.  He helped raise his grandson who worships him.  He has taken care of those around him in any way he can find.  He has seen his share of heartache, and yet none of it ever broke his spirit.  I attribute that to his amazing personality, but also to my aunt who stood by his side.  She matches him perfectly.  The joy and heartwarming feelings I get when I think of my uncle, I get the same feelings thinking of my aunt.

She did not have to join this crazy family.  She did not have to put up with all of our antics.  She did not have to take us all in with an open heart.  She did.  From day one, many moons ago, she has been someone I look up to.  She is gorgeous.  She is smart.  She is just as charming and crazy as my uncle.  She is loving and caring and so giving.  She has been through some major tragedy these past few years.  I believe she is glad to see my uncle's suffering come to an end, but I also believe that God must have his hands carrying her through this all.  She has been through enough.  She deserves us all to be here for her.  She deserves the world. 

The world is a cruel, cruel place.  To us, at many times, nothing makes sense.  Right now, the only sense I can make of all of this is that I am grateful for every memory I have of my uncle.  I am grateful for the extended family he has given me.  I am grateful for the way he cared for so many.  I am grateful and honored to say he was my UNCLE PEBO.  And he will be missed greatly.

This will not break us.  This will strengthen us all.  We will band together and surround my aunt and my cousins with the love, comfort, and support they need at this time.  The world does not stop turning, but we can take on what they cannot.  That's what family is for.  That's what family is.  God is with us and now we have a beautiful guardian angel to help guide us.

My only concern, my uncle was a jokester.  He is now in a place where he is healthy, young, and free.  What havoc will he wreak down on us in laughter showing us his love?  That gives me hope.  Knowing his joyful spirit will surround us all.

Monday, October 15, 2012

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.    

Friday, October 5, 2012

Chance Meetings

Yesterday I went to my son's soccer game.  I have to say that watching kids as young as 3 years old try to figure out and play the game of soccer, in itself, is a joy.  He has been playing since he was 5 and he is about to turn 7.  At this age they still do not have a full field or team.  The coaches are allowed on the field to guide and direct the players.  It is total chaos with plenty of smiles, laughs, trips, and spills.  Best way to spend an hour of your life, in my opinion.  The kids joy is contagious.

Building on that, I volunteer to help out during lunch at his school once to twice a week.  It's almost like an addiction.  I used to volunteer in his head start classes as well.  I could never be a teacher.  I have so much respect for those who take responsibility for our kids for 6 to 7 hours a day.  They put in so much work, it is remarkable.  Volunteering, however, is at my own will, and I am not held "accountable" for much so the stress aspect is removed.  I get to just fully enjoy the innocence and joy of children.  Even in their little arguments or temper tantrums, you can feel their emotions.  It really keeps you grounded, and can help remind you what is really worth focusing on in life.

Although, I am supposed to keep my life as "easy" as possible, we all need something to look forward to everyday.  I look forward to sharing joys and trials with my son. 

Last night, at the soccer game, my mother in law said hello to the woman who sat down right next to me.  They seemed as if they knew each other.  My mother in law is much more outgoing and vocal than I am, so I brushed it off as her being extra friendly.  Within a few minutes, they started up a conversation.  It turns out, they knew each other because they worked together at an elementary school a few years back.  My mother in law had been there 30 plus years until last May when she retired.  This woman I had never seen so I assumed it was a short term working relationship they had.  I was right.

As the conversation went on, they got to the topic of "What are you up to now?"  My mother in law talked about her retirement and the freedom she enjoys these days.  The other woman said "my lupus began to flare up so my husband suggested I just stay at home to take care of myself.  I work a few days now at the college, but....."  That's when my mother in law gave me the look.

She and I had just been discussing the frustrations of all the medicines, appointments, tests, and maintenance I go through with all these diseases.  While waiting for these most recent neurology episodes to be figured out, it seems to make things more difficult.  I am one big, giant Jenga game on top of a high wire.  I am one symptom or one medication away from the whole thing toppling over.  I have to be so careful as to what I chose to do and what treatments I decide to use because one inevitably affects another.  I was telling her that sometimes I think that modern medicine is a cop out and we should let natural selection do its job.  BUT I want to be here for my son and I truly see the treatments as a gift.....I'm just tired of the mary-go-round.

I do not, especially with strangers (face to face), openly discuss my illnesses unless directly asked or it is a necessity.  My mother in law's look was her nudging me to speak to this woman.  I opened my mouth, "Is it just too tiring to work with your lupus?"

That began our conversation.  Turns out she was having very similar neurological problems that preceded her leaving her job.  She is old enough to be my mother because she was there watching her grandson who is on my son's team.  She talked about the years of mystery she went through with doctors not knowing what was wrong with her.  It wasn't until after her 3rd child, I believe to be about 25-30 right now, did doctors finally diagnosed her with lupus.  As the conversation went on, I realized what a mirror I was looking into.  It was almost refreshing....if nothing else, validating.

I explained to her that I have never actually met another person with lupus.  I have seen them on TV, read about them online or in magazines, heard my doctors stories of other patients, but NEVER have I met anyone with lupus before.  She was very friendly and kind.  She told me I would be in her prayers.  I was so intrigued by every word she said, yet it was this casual conversation during our kid's/ grand kid's soccer game.

I came home and told my husband all about it.  I felt so good knowing that the symptoms I have are not a mystery.  They are a mystery to us, but this other lupus patient has them and is being treated so there is hope.  I am not crazy or a hypochondriac because she talked to me and told me these things first hand before I even let on that these symptoms were bothering me.  It is a feeling I cannot describe.  A feeling of, "I knew I wasn't alone, but now I am really not alone.....not even in this town.  There is someone else who understands from the inside."  That was enough for me to walk away with some peace. 

My husband and I got into the deep talking.  I told him it was almost bittersweet meeting her.  I am glad to feel validated.  I am glad to not feel like such an outcast.  I am glad to see this woman being able to go see her grandchildren play soccer.  She got to watch her 3 children grow up to adulthood, get married, and have kids.  That's something I thought was impossible for myself.  Then, to know she has had similar symptoms and problems that have been determined and treated gives me hope.

The flip side to this all is the look in her face.  She was just as tired, frustrated, and depleted as I.  She and I were the only two wearing hoodies and shivering.  It was an evening game in New Mexico fall so even though the temperature was 65-70 degrees, the breeze was cold.  Lupus patients, especially on treatment, are very cold intolerant.  I'll spare the science behind it, but it has something to do with vasoconstriction.  She also talked about her "wasted degrees" because she can not work due to her illness.  "All the wasted time and effort and knowledge" she said.  (My husband has always told me "knowledge is priceless, a degree is never wasted") She even spoke of the misunderstanding from the outside world.  We look like normal people on the outside so we are often judged when a flare up occurs.  I could tell her emotions were so very similar to my own on the inside even though neither of us went there when talking to one another.

That fear of this constant struggle.  It haunts me.  It used to haunt me before I had any diagnoses, wondering if I would ever feel like myself again or get some relief.  Now, I have plenty of diagnoses combined with some stability in many areas, yet I still feel physically bad more days than not (4-5 out of 7 days in a week).  That look in her eye and that unspoken understanding of how hard it all is, broke my heart.  I told my husband, "I would love to see our son grow up and live to see his children grow, but I cannot imagine another 40 years of this day in and day out."

That is something I will need to mull over the next few days.  I will see her often throughout the season so maybe she will be somewhat of a role model.  Her grown kids seem very happy and love her dearly, so she did something right.  Plus, the family is so close knit.  All things to strive for in my future.  It is so hard to compartmentalize the negative aspects out of all that good.

As I laid in bed last night thinking about the days events I told myself I needed to blog about this chance meeting I had because it was so impactful.  I sat down at my computer to get this novel of a blog (as they all are) out, and I had an epiphany- there have been more chance meetings I was not so astute about.  The woman who works in the cafeteria at my son's school had a daughter with Type I Diabetes.  Unfortunately, the daughter has since passed away.  I believe she would be in her early 40s by now.  October is particularly hard for the mother because her daughter passed on Halloween.  Nonetheless, yesterday she had us decorating up a storm in the cafeteria for the kids to enjoy this month.

School has been in session for about 6 weeks and I have been volunteering for at least a month now.  Throughout this month we have shared small talk that gradually leads into personal short stories.  She has shared with me several stories of her daughter.  Mostly good.  All the little quirks she had and the funny things she would say or do.  She also talks about the dog she inherited from her daughter.  This lunch lady has seen so much trouble in her life, and yet every time I show up, there she is with a smile on her face and a friendly greeting. 

In the short month or so I have been working with her and getting to know her she has taught me so much.  I also enjoy the fact that she is not judgemental or insensitive to me about any of the limitations I have or special requirements that may be necessary. 

I look at this now as a way God is walking me through this, if not carrying me.  I may not always take notice, but he is sending down subtle signs here, there, and everywhere that, no-matter-what, we are all going to be OK.  That, in its own right, gives me peace and puts a smile on my face.  I feel horrible today, but I feel taken care of and watched over as well.  That makes the pain a little easier to take.

I do have to note my son goes to a Catholic school so every Thursday morning they have mass as well as complete their catechism requirements during school hours.  The other day he came home from school and told me he was so happy to learn that I will not be sick in heaven.  "In heaven, everyone is young and healthy.  At their best." he said with a beaming smile.  To that, all I could respond was "You're absolutely right." with a big return hug and an equally beaming smile.