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.

You're So Sweet

The last few months (who am I kidding, years) have been rough.  The snowball only seems to be growing bigger, and I seem to be getting smaller and weaker trying to hold it back.  Recently, I have had some set backs, partly dealing with life and partly dealing with my illnesses.  I have openly blogged about the "life" issues so I should quickly fill you in on the health side of things.

In October I began seeing a new neurologist because I continue to have unexplainable symptoms my other specialists, mainly my rheumatologist and endocrinologist, wanted to look in to.  My primary referred me to someone who is fairly close and highly recommended so I jumped at the opportunity.  My prior neurologist rarely did any type of examination, based everything solely on what I told him, and his answer to everything was increasing my anti-convulsant medications.  I have to admit I was terrified to see a new doctor.

With every new doctor it is like a blind date.  Will this person be compassionate?  Will this person be a good listener?  Will this person have a big ego?  Will this person take into account the whole picture?  What tests will this person want to run?  Is this person the right choice?  I went in with my husband, an open mind, and mentally prepared for anything and everything I have been through in the past.  To my surprise, this neurologist is unlike any other I had seen in the past.  He went through my entire medical history (I brought a file cabinet's worth).  He listened to not only myself but my husband as well.  He examined me.  Then came his thoughts.

It seems to be a dysfunction of the autonomic nervous system.  He said he did not have the technology to test for the actual disorder, but they have the technology at the Mayo Clinic if that is something we want to look into for the future.  For the time being, he gave me a pamphlet on fibromyalgia.  He told me in reading the information, I would probably find myself thinking, "It's like I am reading a book written about me".  Then he began talking treatment.  At that point I stopped him.

In the past I had been complaining of the symptoms to a primary care physician.  At the time, she nearly jumped with excitement and said, "I have something that will fix that" and she quickly scribbled a prescription for Lyrica.  I began taking it.  I felt agitated.  I felt swollen all over.  I felt weighed down.........But it helped with the symptoms.  I remember an aunt asking why they hadn't tested for fibromyalgia, but I was disgusted by the idea.  In my head fibromyalgia was an excuse diagnosis for lazy people who wanted to complain about phantom pain.  I was numb, tingling, and achy all over.  Sometimes my feet would feel like they were on fire and all I could do was rub them back and forth over the carpet gently to get some relief.  I would have sleep disturbances.  It just didn't seem to fit what I thought of fibromyalgia.  Plus, even though the Lyrica was helping the burning in my feet it was adding to all the other symptoms.  I thought Lyrica was THE treatment for fibromyalgia.

He explained in a little more detail what his thoughts were, and again mentioned the Mayo Clinic for further testing if we wished to do so.  He then calmed me down by starting me on a low dose of an actual nerve pain medication.  He told me to report back to him and we could slowly go up in dose if necessary and if it helped.  I left the office feeling a little hopeful in that this guy seemed to have a plan, compassion, and thought outside the box.  I also left feeling like a fool who had just been played being told I was getting treated for fibromyalgia (a made up disease).  I felt like a hypochondriac (because of my own ignorance, I know that now).  Then I started reading the pamphlet and he was right. 

It read me like a book.  It talked about the numbness and tingling.  It talked about the burning sensation sometimes combined with a cooling sensation.  It talked about sleep disturbances.  It went into how it affects your digestive system and your bladder function.  Then it went into the biology behind it all, and it made even more sense to me.  Once, we got home I looked up the disorder he was talking about that the Mayo Clinic had technology to diagnose.  I realized why he hadn't just written me a referral to the Mayo Clinic then.

Autonomic Nervous System Disorder (ANSD), also called dysautonomia, is quite similar to fibrolmyalgia.  It is a dysfunction of the nervous system that can trick the brain.  The major difference in the two disorders is that ANSD actually causes nerve damage whereas fibromyalgia has no record or research showing progression or nerve damage, just dysfunction.  Here's the clinger (and why an instant referral had not been written) the only way to treat ANSD is pain management along with treating the underlying cause (if the doctor can pinpoint it).  Pain management for ANSD is the same as fibromyalgia treatment.  So, no rush because the outcome will be the same for the moment.  I am sure in time, if he truly becomes concerned with damage being caused he will push a little more for me to go to the Mayo Clinic.  His exact words as we left his office were, "We don't want to do too much at once.  One foot in front of the other and we will slowly break down the wall."  I like that thinking.

That has been a lot to take in.  I actually haven't even talked much about it to anybody or even explained it in detail.  My belly is constantly giving me trouble and last week I ended up with a stomach flu (shortly after just having strep).  Then, my blood sugar starts going crazy.  To keep this post as minimal as possible, I went through three infusion sets for my insulin pump in one day.  Problem being, the catheter is getting kinked.  I do not have enough fatty tissue for the 6mm catheter to go in to.  The manufacturer of my pump recommended I contact my health care professional to talk about alternatives.  Luckily, I had an appointment with my Diabetic Educator/ Nutritionist today. 

I go into the appointment prepared with my log book in hand and running through everything that has gone on since I have seen her so that we can put all the pieces of the puzzle together.  Her suggestion and we literally came down to our "all else fails" plan, a j-tube aka feeding tube.  Due to all my illnesses, take into account my medication and the medication schedule, along with my ability to take in food- the amount as well as how often, my weight diminishing leaving me no place to put my insulin pump, and the precise amounts of insulin I need (I am seriously sensitive to it) we need to think about by-passing my stomach and putting nutrition straight into my small intestine.

Let's not get too dramatic here.  This is not a permanent feeding tube (as far as I know, I haven't looked into it and the appointment was just a few hours ago).  This is a port, essentially, that will allow me to have my normal 3 meals a day, but this port will also allow me to supplement my food intake between meals without affecting my medications or other treatments.  Also, on days when I am not able to take in any food, this will allow me to get nutrition without torturing myself by forcing food into an already uncomfortable belly.  Her goal is to add weight which will give me strength and energy and a place to put my pump without the fear of not absorbing the insulin.

So, WOW, right?!  But my attitude remains positive for many reasons.  One, God has me in his hands.  Two, my beautiful son.  Three, a comment someone made to me yesterday.  The heart of this whole blog.

There is a man around our small town who is smiley and friendly.  You can tell he is a little off though.  I worked part time at a bank when I was first put on disability.  He would frequent the bank.  He is always very nice.  He tries to be charming, but I do have to say it comes off a little creepy.  You can tell he means well though.  Recently, I started noticing him going to my church.  Yesterday he greeted me as I came in.  He offered me a piece of candy which I politely declined.  He insisted but I explained I could not have candy.  His follow up question, of course, was if I was diabetic. I confirmed.  He then leaned in and said, "You know why you're diabetic?" I waited.  He said, "because you're so sweet."  I told him thank you and quickly sat down thinking how uncomfortable that encounter was.  As the church service went on it began to hit me.  He is right.  I am diabetic because I am so sweet, and that is something to be proud of.

I face all these struggles every single day.  Mine are mostly health struggles.  But I would not have been given this life if it weren't meant to be.  God knows I can handle this.  God gave me gifts that I may not see through the struggles but He is showing me that He believes in me.  I see that if I were not sick I would still be this Type A over-achiever.  I bet I would be hard to handle (as if I am not now).  My ego would be enormous and I would look down at all the "average" people in disgust as if I were something great.  I would not be the mother or the wife I have become.  I would not be as compassionate.  I would be more bitter and less forgiving.  I would not be who I am today.  So, he was right. 

I am so sweet!

-keep in mind I am no expert and have not fully researched the new information my doctors have given me so it may not all be accurate. Please, see your doctor for more accurate information.