Next Stop: Johns Hopkins Medical Center

My biggest connection to the outside world (sadly) is Facebook.  I only friend close friends and family members to keep things as private as possible.  This blog has connected me to a more diverse group, but I absolutely enjoy it.  I think it is important for me to update everyone because I have been vague on Facebook and in person relating to my most recent health issues.  Not only that, there may be someone out there in search of answers or a connection going through something very similar to me.  We cannot look at illness as a weakness and hide it from the world.  We need to share our stories so that real change can happen for those who are suffering from complicated cases.

My last post I mentioned that it was suggested I get a "J Tube" inserted.  This is a tube that goes into the small intestine, by-passing the stomach, to get nutrients directly in to the intestines.  This comes as a result of continued weight loss even with treatment for gastroparesis.  This weight loss has left me with very little subcutaneous fat to insert my insulin pump.  Without that tissue, insulin is not absorbed properly.  That in turn results in erratic and dangerous blood sugars.  A domino effect we would like to stop as quickly as we can because it is starting to trickle down and exacerbate much of my other illnesses.

After much debate amongst myself, my doctors, family, and my nutritionist the conclusion has been made that it is necessary.  My first consultation appointment with my surgeon will be January 29th.  To my hungry body, that seems so far away.  Also, at that time they plan to remove my gallbladder.  About a year ago they found calcification in my gallbladder but opted against surgery at the time because I was too weak to withstand it, and they did not want to make me vulnerable to infection.  Now, we can kill two birds with one stone.  In my opinion, that's a gold medal.

For more than 7 years eating has been difficult.  The last two years have been the absolute worst.  It started with some bad bloating.  Then came some sharp lower abdominal pain. (I won't get graphic but for sufferers it is important to note the following) My bowels changed in color, shape, consistency, frequency, you name it!  Slowly over time I noticed I was feeling overly full frequently.  As time passed the bloating, pain, and fullness became worse to the point of frequent Emergency Room visits with little answers.  Finally a gastroenterologist came into the picture and began knocking down one brick at a time.  At this point he has found pernicious anemia, gastroparesis, Celiac disease, abnormal cells in my colon and rectum (he is certain this is an inflammatory bowel disease but has no conclusive evidence as to the specific type yet), and calcifications on my gallbladder.  Even with treating all of this in addition to treating the nerve dysfunction (which should help digestion) I continue to decline and symptoms are worsening.  I cannot tell you how badly I want to eat an "allergen free" brownie right now that has been in my cupboard for days just screaming my name and yet my gut is telling me it is impossible.  I equate that to torture (excuse my dramatics).

The "J Tube" happens to be a temporary plan.  Once the debate amongst professionals commenced, it was strongly suggested (for the umpteenth time in the past 5 years) that I seek answers and help at Johns Hopkins University.  Luckily for me, considering my symptoms, no doctor referral was needed and they quickly scheduled me for an appointment May 22.  So, for the four months while we wait and hope for answers and relief I will use the "J Tube" as a supplemental way to add calories and nutrients to my diet.  My local doctors (NM) are leaving it up to Johns Hopkins to take it from here.  They have all thrown in the towel, admitting my case is too complicated and sensitive.  They will follow me closely and hope to pick up where Johns Hopkins leaves off.

That adds a whole new can of worms to the mix.  As if finances were not already a worry for the majority of Americans, we are not immune.  With my health issues we certainly have to budget tightly and sacrifice many luxuries.  We make ends meet, but with this most recent news we know we are in over our heads.  My life has no price tag.  I am a daughter, a sister, a wife, a mother, a daughter-in-law, an aunt, and a friend.  I will not let this conquer me without a fight.  I will not let this conquer me.  I will not let this take precious time away from my son.  With the support of great family members and offers by great friends, there has been a benefit account set up for me to help my husband and I with medical and travel expenses we are sure to incur over the next several months.  I will admit it is a desperate plea, but all pride is lost in times of desperation.

My family members have also set up a blog site themselves.  We know the coming months will be trying, but I do not want to keep people wondering.  The sight is set up for my benefit/ donation account.  The blog will be updated as information rolls in due to the fact that I may be too tired, weak, or out of touch to update my own blog.  Please visit this sight for more information http://helplaurenheredia.blogspot.com/  regarding donations, my treatment and status.  Together we will find a way.

I have hope that this will be a new chapter in my life.  I know more life changes are to come, but I have high hopes they will all be for the better.  I wish to improve the quality of life for my son, my husband, my family, and of course myself!

I am a fighter.

Technical Difficulties

As if life in general weren't complicated enough.  I have to admit that I am not too tech savvy.  I was one of the later of my generation to join MySpace just before Facebook became the big thing.  I was then reluctantly talked into joining Facebook. All the while, I had a laptop and a cell phone.  Let me notate that both were very basic models, as I do very basic things tech-wise.

I got into MySpace and then into Facebook.  They are very addicting.  As Facebook took over the world and MySpace faded away, I was sucked in even more.  Especially just becoming disabled and suddenly having minimal connection to the outside world, this gave me a way to feel connected to all the people I was distanced from by my new situation.  Not only that, I was able to connect with old friends I had lost contact with as well as family members who lived out of town.  That was a highlight for me because at the time my son was very young and I felt it was my obligation to keep my family updated on him.  I liked being able to post pictures and status updates to the masses rather than singularly text message or picture message my family or friends.  Let me be clear, my page has and will always be private, strictly for family and friends.

Remember I said I had a cell phone this whole time.  The problem was that I had a basic cell phone.  I have had a cell phone since I was in college, granted that journey began over 10 years ago.  That was when texting became the big thing.  I am a texter.  Smart phones came out, but I never had the money to afford one.  By the time my son was born, I was getting mocked a bit because I would send picture messages around.  My basic little cell phone took pictures and could send them, but when those who had smart phones would receive them they would be tiny little, sometimes unremarkable, pictures.  I got mocked.  Eventually, someone bought me a digital camera.  Full circle, Facebook allowed me to use my camera to send these pictures.  All the while, I held on to my basic cell phone.

I cannot explain my resistance to technology other than it overwhelmed me.  More recently I am starting to gain ammunition as to why I do not want to embrace further technology.  Although, I see its importance in medicine, I do not see the importance to constantly add more "conveniences" to our lives considering we are all overwhelmed by multi-tasking.  Add that to the growing obesity rates and I'd say some of these "conveniences" are more detrimental than helpful.  Scratch that, I should say the user of the convenience has the control to use it wisely, but the vast majority are falling prey to the evils.  It is human nature to follow the crowd.  Hindsight is 20/20.

So much has happened with my health, our family, our nation, etc. in the past several months.  For myself personally, some relationships have been seriously damaged if not ruined, by the evils we do not always see in technology.  Now that I have not only watched marriages end, friendships end, family drama being stirred up.....the list goes on, I am just astonished by the fact that so many of us have not backed away to repair the damage.  I myself have had my share of troubles. 

Last spring I lost a friend over several months of Facebook posts that were misunderstood.  We obviously did not communicate well so the misunderstandings turned into hurt feelings and anger ensued ultimately ending the relationship.  I blamed that on my friend that I had just lost, sure it was her and not me who let Facebook come between us. 

Just last week I commented on a post I apparently misunderstood and offended a family member.  That family member's comment in turn offended me.  My solution to that was to end the communication for that conversation on Facebook and actually get a hold of my family member to make sure this person knew I really cared.  Honestly, I should have called her directly.  But rather than make a big deal out of a simple Facebook post, I texted unrelated conversation in an uplifting manner and made sure I let the my family member know how important they are to me.  I have to admit, I am a little shy and my thoughts and emotions come out much better in writing than in talk.  My go-to for any problem as long as I can remember is to write it out.  A little more than a decade ago, a hand written note was acceptable.  Even with that, it can be misinterpreted.

Finally, last night I fell prey to the very thing I misunderstood about my family member's post a few days before.  I finally got a smart phone a few weeks back.  I discovered the Facebook app.  I should have seen it coming.  Facebook sucked me back in and the next thing I know, I am commenting and status updating left and right.  Yesterday I was taking my son to Tae Kwon Do and listening to a song that has brought me a lot of peace this past month.  The line that gets me every time came on at a stoplight which gave me the opportunity to quickly post it as my status update.  Problem being, I did not use quotation marks or sight the song writer.  Within hours, I had an influx of phone calls, text messages, and emails asking if I was "OK".  Apparently, the way I had posted that particular update made it look as if I wanted to end my life.  Damage control continued for an hour or so and I finally updated my Facebook page with more information to end the confusion.

I should have vocalized this thought several months ago when it first occurred to me.  I have stated I am not the best with vocalizing.  I should have, if nothing else, written a blog about it then to get it out.  Instead, I kept my little epiphany to myself and landed in the position I was in last week and last night.  Technology and it's conveniences are meant to be enhancements to our lives.  Social media, email, and texting should enhance an already stable relationship not replace it.

I am much better at writing than talking.  I can express myself much more freely in writing.  I am definitely much more articulate in writing.  Writing is like a thought.  No one else can hear it.  The difference is, a thought is kept inside the mind whereas writing can be displayed.  In the display it is impossible to completely set the emotional tone of the words.  Anyone who knows the writer well may be able to "hear" the writer speak the words as they read the writing.  It is those fragile relationships, maybe new or distant or from the past, that fall victim to the tragedy that is misunderstanding and lack of real communication.

Little ol' me in lil ol' small town USA is calling the masses to open their eyes to the devastation lack of communication causes.  I heard once to be kind to everyone because behind that smile is a battle.  Everyone of us, whether it be illness, finances, divorce, what-have-you is going through a great struggle.  Some of us are hanging by a thread.  The lack of communication adding to the misunderstandings and overthinking that comes with social media and technology can break that thread in an instant.  It is so hard to "communicate" what we are really trying to say in 160 characters on a screen.  Don't take the ones you love for granted.  Let's enjoy these conveniences by enjoying how they enhance our lives before we all become hermits tapping away at a keyboard or touchscreen all alone.