A Little Kindness

I had my consultation appointment with the general surgeon for the J-Tube insertion we have been talking about.  Let me just say that I am astonished.  I have had auto-immune diseases since I was in middle school.  I have seen countless doctors.  I went to college for a health care profession and worked with a few doctors.  I realize that doctors come from all different backgrounds and all go in to the profession for different reasons.  Somewhere along the way, whether in school or during their career, doctors often allow their egos to take control of their patient care.  I believe I am a clear picture of this in this particular situation.

I have at least 7 different health care providers following me currently.  I have, for years now, asked that they communicate because I am no expert.  I cannot always tell what symptom is a red flag or what disease it may be affecting.  They all assure me they are/will work together.  January 7th was the first day I heard about the J-Tube.  By January 11th, I was told it was the "general consensus" to go ahead with the feeding tube to sustain me until I could make it to Johns Hopkins Medical Center in Baltimore in May.  In my last post I mentioned how far away the consultation appointment seemed because the doctors who had spoken to me directly made this seem urgent.  I believed them because I know I have been force feeding myself uncomfortably for a while now.  I was just looking for respite.

Normally, I am an information junky.  If I get a diagnosis or a new treatment plan, I usually rush home and research it until I can find no new information.  This time I didn't.  This time I was just too overwhelmed and frightened to know what would come of all of this.  I decided instead to allow the doctors to do their job.  My plan was to pray, focus on my family, and put one foot in front of the other until it got easier to look up.  That's exactly what I did.  Throughout the month, I suffered, but I prayed endlessly for God to guide the doctors to make the best choice for me.  I prayed that God allow me to be open and accepting of the decisions the doctors make and remind me that the journey I am on is His plan.

January 29th rolls around and my nerves were at their highest.  I didn't sleep soundly the night before.  We walk into the appointment expecting to hear when surgery dates are set up, but we left blown away.  The surgeon explained that the state my digestive system is in is not suitable for a feeding tube.  It would be a temporary solution for a permanent problem that has the potential for making the current situation much worse.  You see, a J-Tube is normally inserted for a short period of time for people who may have difficulty swallowing or an acute injury.  My entire digestive tract is not working properly, so force feeding food directly into the intestine could damage it worse.  In addition, my immune system is attacking my system so he explained that cutting a hole in an intact intestine could lead to countless complications, including needing the feeding tube permanently while constantly addressing the complications.  That brings us to my gallbladder.

My primary care physician found calcifications on my gallbladder over a year ago.  At the time she sent me to the current gastroenterologist.  She has been insistent on getting it removed and thought with the feeding tube being inserted we could get it out at the same time.  I agreed because I feel like I have no room in my abdomen for what is currently there anyway, so I am all for taking out anything that may help.  The surgeon reiterated what the gastroenterologist said last year, he would not remove the gallbladder and submit my body to surgery due to fear of introducing infection.  His suggestion was an electrical gastric stimulator.

This sent my head spinning.  It was clear that these doctors had spent the last month hounding me with information about this feeding tube and the urgency for my blood sugars to get under control and my weight to go up all the while none of them actually communicating with each other or looking at the whole picture.  If just one of them had spent a little more time looking into the benefits versus risks of the feeding tube, they would have stopped the process dead in its tracks.  As I have looked further into this option of the feeding tube, I realize it was never a viable option for my situation to begin with.  How did 7 doctors overlook a referral for such a drastic yet dangerous "solution" for someone who has been nothing but compliant and continually in distress?

With all of that, I looked at the surgeon and told him, "I don't know where to go from here.  I have an appointment with Johns Hopkins in May, but what should I do for the next four months?"  I was feeling too betrayed by my other doctors and overlooked to turn to them for more help.  I was scared I may not make it the next four months with the little amount of food I have been taking in.  The surgeon said his office would research the stimulator, find out who does the placement, and get us referred there.  He explained it would need to be within driving distance for follow ups and calibrations so Johns Hopkins was not ideal for the management of the stimulator, but he certainly agreed I need to get to Johns Hopkins as soon as possible before my body declines even more.

So, with that information and money out of our pocket for a visit that was only more traumatizing than the 22 days that came before it, my husband and I walked out of the office.  In the car I broke down.  Not because I was disappointed I wasn't getting cut into, but because I had been pressured into this plan I was never really comfortable with to begin with only to find out it was more dangerous than what I am already going through.  It was also another slap in the face by reality of the magnitude of my illnesses and the havoc they are wreaking throughout my body.  By now it has been about a week and I have had some time to decompress.

I have done some minor research, but have made a decision.  I have looked into the closer facilities that have the technology for the placement of the electrical stimulator.  Luckily, there are a couple within driving distance and close to family members I would love to take advantage of, but I have to think of every possibility.  At this point, I have an appointment with a hospital who is ranked #3 in gastroenterology as well as specializes in research of Schmidt Syndrome (which the surgeon openly said he had never even heard of).  I feel that the best thing for myself and my family is to wait until I get to Johns Hopkins.

Let #3 and the immune specialists do their full work up.  Let them come up with the best treatment plan.  From there, I will ask them to delegate down to the closer locations.  There are a million possibilities, but what I do know is that I have been to two major educational hospitals and still have no real answers.  I am no longer willing to let doctors grasp for straws trying to solve this intricate puzzle.  I will not be a trophy for a doctor to hoist on to their mantel at the end of their career.  I will not be a pin cushion or guinea pig either.  I will live my life to the fullest every day that I am given.

In the meantime, my gastroenterologist changed up some medications in hopes that we can at least sustain the weight I have now until I get to Johns Hopkins.  I cannot tell you how many different times in the last few years, but certainly the last week, I have heard "Johns Hopkins is going to save your life."  That's a hard pill to swallow.  No one wants to hear that, but at the same time it gives me hope.

In light of all this turmoil, the donations have been rolling in.  I am so grateful to all the people out there who have heard my story and want to help.  Having the support of my husband and son in Maryland will make a world of difference.  Not worrying about finances while trying to get the treatment I need is a gift I can never repay.  But I think it is important to tell a story of an amazing little man that I believe God has put on this earth to teach us all a thing or two about life.

Last week my son received an invitation to a friend's birthday party.  He and this little boy have been friends since headstart.  They played soccer together and were in Taekwondo together.  They also attend the same school.  On the invitation it said, "Instead of gifts he would like for you to bring a monetary donation.  He is going to donate the money received, to a special friend."  This party was going to be held at a local pizza restaurant.  Not only was I feeling exhausted from the month I had had, the week I had had, but the last several parties I have taken my son to I have gotten sick.  My husband worked that night so I would certainly have to take this task on alone if need be.

I talked myself into it.  My son thinks the world of this little boy.  My son has been taken out of Taekwondo because of my health and has been house bound, other than school, the entire month of January.  I needed to let him have this.  I needed to let him be a kid and enjoy his friends.  I needed to push my exhaustion aside and try (again) to make it through without falling ill after.  Plus, I think the world of this little boy's family so I had to not let my health hold me back again.  This is my thought process often, health can only hold me back so far.

We went to the birthday party.  It was nice.  I love the pure innocent joy of children.  I love the brothers and sisters.  I love their excitement.  I love to see my son smile and laugh as if he has not a care in the world.  And that's what he did.  The birthday boy is so poised beyond his years, he stood on a chair at the end of present opening and thanked everyone for coming to celebrate his birthday.  He also thanked everyone for the donations.  I was just taken aback by him and his family and how the kindness seems to flow from them even in casual conversations.

As I was getting into our vehicle, helping my little man organize all the little goodies he had gotten at the party, someone rushes up behind me.  I turn to see the birthday boy and his mom in the dark, cold parking lot.  They handed me a box.  The mom explained to me that it was the birthday boy's decision, but that he had really wanted to help his friend out.  They had heard about our situation and the donations and wanted to help.  I just about lost control of myself, but I did not want to scare the birthday boy with tears.  I held my composure long enough to give him a BIG grateful hug and tell him how special he is.  I thanked them, I don't even know how many times, before I finally got into my vehicle and drove home.

I got home and told my husband the story.  We both broke down (in our own ways), but spent the next several hours- scratch that- the entire weekend talking about the amazing kindness and compassion this little seven year old holds.  This little boy is wise beyond his years.  He has a kindness in his heart and his eyes that is a true gift from God Himself.  I believe we all have so much to learn from this precious little angel.

This past Sunday, I donated a portion of the money he donated us to my church.  I always give an offering, but it is never much.  This time, I felt it was important to pay it forward.  Not just what this little boy had done for me, but for every single penny we have received from the pockets of others.  We do not deserve this money.  We have not worked for it.  We have nothing in return to offer for it.  But we need it and we asked.  Kind and generous folks are hearing our story and offering a helping hand.  Kindness is contagious.  Support is healing.  Love is never ending. 

I may be facing the most difficult calling of my life, but there is a reason.  I am being taught lessons everyday from unexpected places.  We do not suffer in vain.  If I do not come out of this on the other side on top, I will be a stepping stone or a mystery solver for the next sufferer.  My daily life may be difficult beyond comprehension (even my own), but my life is being molded as we speak.  I will come out of this so much wiser, hopefully more compassionate, and stronger than I ever thought possible.

And that one little boy opened my eyes to that more than I could have ever imagained before. Thank you!

The Best Days Of My Life

Hello all.  Another week down.  Another appointment under my belt.

It has been a rough week to put it mildly.  As many of us know, stress is becoming a major epidemic in today's society and culture.  Not only do those of us with chronic illnesses have things to worry about everyday, but the entire world is going through so much economically, politically, etc.  I always feel so overwhelmed with what I have on my plate, I find it hard to keep up with current events and pop culture because it adds a whole other level of worry.  My family, of course, is not immune to any of this.  As a prime example, I believe as a family, we had a nervous breakdown this past weekend.  In the days following, we have been trying to pick up the pieces and mend the residual damage.

In doing so, I have been avoiding modern technology.  I find, for myself, that refocusing my thoughts and priorities is usually what it takes to get my mind back on the right track.  I find myself resenting what I see on television or on the computer that I desire but do not have.  I find myself getting emotionally involved and attached to news stories from across the world, and in turn having a strong desire to do something about it.  In reality, I have no control over politics.  I have no control over natural disasters.  I have no control over who's cheating on who, or who's lying about what.  No control, must let it go. 

Today, I actually sat down and watch television.  I allowed myself to relax and watch an entire show.  John Ramsey was on this particular program.  He was discussing what has gone on in his life over the past 15 years, since the death of his 6 year old daughter Jon-Benet.  He lost his daughter, he and his family were looked at as having something to do with the tragic death, he lost his wife,  after her death the family was publicly cleared of any wrong doing in the death of Jon-Benet, and finally he found a new love, a new wife.  He has written a book about his ordeal.  I could imagine it would help so many going through any type of struggle in life to put things into perspective.

He said one important thing that stuck out to me.  He was asked how he was able to find happiness after so much turmoil.  He said that a few years ago a good friend asked him, "Do you think the best days of your life are behind you."  John said, "Well, yes.  How could they not be?"  His friend replied with a comment similar to: You have to think the best days of your life are ahead of you.  John explained why that made so much sense.  There has to be something to look forward to.  This is what we call hope.  You must believe that the best days of your life are ahead of you.

I quickly jumped to my desk to write this down.  I thought, "There has got to be some way I can use this.  Is it possible for the best days of my life to still be ahead of me?"  An honest question.  Ironically, as I'm talking to myself and jotting this down, John is still on the TV in the background explaining it may not be what we expect, it may not be what we planned, it probably isn't what we think will make us happy right this very moment, but if you don't believe there is something better out there for you...... God puts us on this earth for a purpose.  That lead me to one of my favorite thoughts, "God does not cause suffering in vain.  He would not put us through something so hard for no reason."  It started coming together for me. 

Still, even writing this blog, hoping someone out there is reading and actually getting something from my ramblings, I still don't feel that peace.  I am seeking it, actively.  I want that peace of mind that it is all going to be ok.  I am doing my best in every possible way, and that is all I have control over.  I have begun to pray outwardly.  I actually get down on my knees and open my mouth and speak my prayers.  I consciously decide to find the good in every situation, which actually starts becoming second nature quite quickly.  I actively slow my snowballing negative thoughts to grasp reality and look at things more rationally.  Yet, I am still not whole. 

I mentioned that I had another appointment this week.  This was a follow up with my immunologist, whom I am beginning to love.  No big news, thank goodness.  We are making an attempt to control the allergies he discovered in hopes that it will help with my energy levels and daily feeling of malaise.  He along with my primary believe that many symptoms from the combination of diseases I have may subside once my body is not under so much stress.  I believe they are right.  I have hope that the allergy medication along with allergy shots will help lift some of the weight off so my body can gain some strength and control. 

I also wanted confirmation on the most recent diagnosis.  It is new to me as is the terminology surrounding it.  I wanted to be able to relay the information on my blog as well as understand what I am facing.  I have APS II or autoimmune polyglandular syndrome type 2 aka Schmidt syndrome.  It is a rare disorder in which the immune system attacks several different organs or glands throughout the body.  Most typically it is seen with someone who has been diagnosed with Addison's disease (a condition where the body does not produce enough cortisol) along with Type I diabetes or Hypothyroidism.  I, however, have not been diagnosed with Addison's.  It has been thrown about and I have been tested for it, but no diagnosis has been made there.  Since it is a rare syndrome there is little information on it.  There are also very few doctors who understand the scope of it.  Even my immunologist consulted with doctors at a university to insure the diagnosis.  As I learn more, I will write more and inform more, but I would like to back away from that at this time to prevent misinformation to needy people.

I only want to inform, inspire, and release.  I hope that my new saying, "The best days of my life are still ahead of me" will begin to become a natural part of my thinking.  I hope that it can inspire me to do something positive with the nervous energy that builds up, as it always does.  I am always looking for inspiration.  I am always looking for that one thing that is going to spark the passion in me I had before it swept so quickly away.  I am here for a reason.  I am here for good.