Mountains Climbed

Nine Months has gone by since my new life began. I have proudly called it my second birthday many times and truly mean it. July 31, 2013 I got an Enterra gastric stimulator implanted. A device that has forever changed my life. I had been suffering a severe case of gastroparesis that was not responding to treatment. I went from a slim frame to a skeletal frame, losing more than 30 total pounds throughout the course of the disease. It was recommended for the umpteenth time that I go to Johns Hopkins University Medical Center. After a consultation in my hometown for a feeding tube determined my comorbidities would be exacerbated, even life threatening with forced nutrition, the surgeon had an 'out-of-the-box' idea I had never heard. Leaving that appointment with little information other than an "We'll be in touch after some research..." I was devastated. I had been weakening and weakening physically, but more so emotionally. A week later, a doctor had been chosen in Dallas, TX they were sure could help. But I also had to go to Johns Hopkins in a last ditch effort to save my life.


Within a month of the consultation with the feeding tube surgeon, we were on our way to Dallas to meet this amazing doctor. That very first appointment, he made a clear decision that my only hope was the gastric stimulator and I had plenty of history to show I was a great candidate. Not only do the physical ailments have to be there for medical devices such as these, but mental state plays a big roll. They do not want to implant a device or even attach any device to a patient who is not going to follow what is necessary for the device to work. For example, an insulin pump patient (which I also have due to Type I Diabetes) goes through the same mental test, insuring the patient has the right mindset to have a device attached to them 24 hours a day. You'd be amazed at what these things effect in daily life. He needed to be sure I understood everything. The device is implanted in a subcutaneous pouch in the abdomen (made by the surgeon) and leads attached to the device are guided through the abdominal muscles into the lining of the stomach. Recovery time and full effectiveness usually take about a year. You do see the device bulge out under the skin and you have to learn to adjust you movements accordingly. The battery lasts about five to ten years. At that time it is determined if a new one can/should be implanted. While explaining this he monitored my reaction and comprehension to determine if I was a candidate. Thank God it turned out positively for me. He then needed ammunition for the insurance to agree with his findings.


This time last year I was going through some brutal testing to prove to my insurance company why I was a candidate for such rare treatment. It actually isn't even considered treatment. The FDA classifies it as a humanitarian device, which simply means it improves quality of life but does not treat or correct a problem. That is why so much is needed for the insurance companies to even consider it. I was taken off my motility medications as well as my digestive enzymes and ulcer preventative medication. I take digestive enzymes because my body absolutely does not produce them. The ulcer preventative is due to Pernicious Anemia in which the inner lining of my stomach is eaten away by my immune system as well as having an alkaline environment as opposed to a normal pH level in the stomach or an acidic much like a GERD patient may have. The alkaline state is just as dangerous, if not more, than an acidic state in the stomach. I also have Celiac Disease in which the immune system is attacking the lining of the small intestine when gluten is in your system. That all being said, you can imagine I was incredibly uncomfortable. The process took about two weeks. I had endoscopies, gastric emptying studies, MRIs, CT scans, and I even swallowed a pill with a camera and other scanning properties that traveled throughout my digestive system giving a better look at what was going on inside. That in itself was the most difficult yet interesting one of them all. I was finally told the doctor had enough ammo and I was free to return home, but it was also necessary to be seen at Johns Hopkins to solidify it all and be sure every stone had been uncovered.


Once I returned home from Texas, I had six days to prepare for my trip to the scariest place I had ever gone. I had been seen at the Mayo Clinic in 2008 following through to the beginning of 2009 (not continuous). I was terrified then. Now to be sent to an equivalent or an even more progressive facility really puts mortality in front of your face. Luckily, I had my husband and my son along as well as an amazing aunt and cousin who flew out to Baltimore just to support me. That will never be forgotten- all the support. My sister even set up a donation account to help with travel and medical expenses. I was blown away by all the love. A quick trip into the doctor's office at Johns Hopkins lead to a few minor in-office tests all coming out as expected. This gave the doctor the ok to agree with the opinion of the previous two doctors I had seen regarding the need for the gastric stimulator; if for nothing else but the increased caloric allotment. The only stipulation, we had to move to the Dallas/ Fort Worth area to be closely monitored for life. I had never lived outside of New Mexico other than the two years of back and forth to California when my dad was alive. A move that was absolutely not planned had to be made within six weeks.


A feat I thought was impossible slowly began to play itself out. Years and years of pain and suffering with little to no answers in terms of relief- just diagnosis after diagnosis with treatments but relief was hardly part of the equation. My prayers for respite had been answered, loudly. But as those moments of change began, all I could think was the world was moving too quickly. Again, with the incredible support of my sister and extended family we found a place to live that fit all of our requirements. With the help of my parents we were packed and ready to go within those six weeks. My husband had to stay behind to continue working until logistics got worked out. Thankfully, he was only there three weeks before he could join us. He made his move two days before the beginning of this new life. All the while I was wasting away even quicker because life had gotten away from me. I couldn't believe it all fell into place so easily yet so inconceivably.


Entering the hospital, I was down to 80 such pounds. I did not ask the exact number. I had to fast as you normally do with most procedures involving anesthesia. I have had to fast so much in recent years, I will be glad to never see lemon-lime soda or Gatorade as well as lemon or lime Jello. The next day, all I remember was being excited to finally get the stimulator and then, waking up. I woke up in incredible pain as if a fire had been started in my abdomen and nothing was there to stop it. I am not talking heartburn type fire, I am talking roasting-chestnuts and accidently falling in the fire. A nurse immediately came to the rescue with pain relief pushed into my IV. My husband was allowed to see me shortly after that and I remember him asking how I felt. I said, "Like I have been hit by a truck....but a good truck!" He must have passed that along because that phrase has followed me since and I love it.


Those first few days were difficult. I was expecting or strongly hoping I would be able to eat right away. I actually could only handle smoothies but quickly moved on to tiny doses of pizza and French fries. What else would you chose after not being able to eat solid food for so long? I thought life was going to be better, but that I was going to be weakened and forever changed by the surgery. The timeline was given to me, a year towards recovery and full effectiveness. As the year passes, I have reached many milestones, but in the back of my mind every month I think "Look what this has done for you. This is the best it can be." I am proven wrong time and time again.


I recently have reached milestones I have dreamed about for years. You may get tired of blog post after post talking about the unthinkables I have reached, but that's the reality of my journey. And isn't that incredible? For the first time in two to three years I was able to put jeans on with little to no discomfort this past weekend. Previously the waistband and button that have no give would only cause pain to my constantly full and distended belly. Then, in the past nine months, I would try jeans on every now and then, but it would still cause pain, only now it was the device sight and the belly discomfort. I have saved my favorite pairs of jeans out of hope of one day wearing them. As I was doing laundry on Saturday they caught my eye while putting away my normal attire of yoga pants. I stopped in my tracks and decided to try them on. I put on a loose pair first and they felt alright so I moved on to my favorite pair. They felt fine. I squatted, I bent, I twisted, I sat...and no usual pain.

The pain at the site had now turned into just slight discomfort. That's normal with jeans considering none of us ever find the perfect fit. I danced around with my son for a little while and the jeans still felt alright. I made him take a picture out of sheer glee. I have not challenged myself to wearing them all day, but I will get there. I felt so accomplished, my mind has been reeling about what else I may be able to do. This morning a challenge was calling my name.


I usually rotate walking and yoga for exercise about five to six times a week. It's a great time for centering myself. My walks includes my little dog Chewy. He is a Dachshund/ Chihuahua mix, that's what I mean by little. This morning I took him for our usual walk at a walking trail at the college across the street. It's a one mile loop and we normally do two. Today, as I normally do, I saw a few joggers along the loop. I used to be a long distance runner so that itch is always there. I haven't been able to run for at least two and a half years or more. Today I thought "could I run a mile? I could try....but stop if it doesn't feel right. Stop." So, I had this little discussion in my head the whole time I was on my walk. Chewy couldn't run with me for certain so I walked him home. I told my husband what I was going to try and he was reluctantly excited. I went across that street, I got on that path, and I ran. I thought I would surely wimp out a few steps in, but my body just fell into natural motion. I didn't get out of breath. I didn't push myself. I just ran a mile. I felt ecstatic. I walked home feeling more powerful and accomplished than I had in years all the while knowing this incredible device is helping me climb mountains.


Not only have I been able to do these things; eat more solid food, go to restaurants, wear jeans, run again, even build strength with yoga not just maintain the little I had; but my heart and mind have grown exponentially too. Years and years of day in and day out malaise is so exhausting. Imagine waking up feeling like you have the flu everyday, but you still have the same responsibilities and expectations on you as any other person in the world. You put on your best face and muddle through the best you can. Every now and then a burst of energy comes and, a phenomenon described by doctors, you go into this manic state, trying to accomplish as much as you can while the energy is there. So, I may be glued to the bed one day and the next day a little feeling of increased energy has me rushing to the store, cleaning the bathroom, washing dishes, vacuuming, etc. until the energy fades. You crash and burn then pay for the overexertion for a few days thereafter. Now, I often still feel puny, achy, nauseated, flu-like but it has lightened up enough for me to notice. I sleep through the night sometimes feeling refreshed in the morning. All in all, the humanitarian device has done exactly what it is intended to do.


The thought I'd like to spread to the world is open your eyes to the world, don't focus on the daily grind. When I stop to write my blog or in my journal at night, I am often tired and in need of a release. As I go about my writings I start to uncover all the little jewels I missed throughout the day, the week, the month. This makes me turn to my son and see how far he has come. Not a day has gone by with him on this earth, that I have not seen a miracle up close and personal. But to know he has lived his entire life with a sick mother only speaks volumes to who he is today. At such a young age he has more compassion, wisdom, and intelligence than I see in the average adult. He challenges me intellectually on a daily basis. Sometimes I get so wrapped up in responsibilities I forget to slow down to embrace him fully. When I open my eyes, I see the glory of the world. I see how amazing he is. I see how beautiful the trees and the sky are. I feel all the improvements in my body. I see lights at the end of the tunnels when physical ailments overcome me. These mountains I have climbed will be in clear view for years to come.


I will actively continue and strive to keep my eyes wide open. The happiness I have felt these past few weeks is close to the elation I felt the day my son was born and the day I got married. How can the unimaginable continue to happen only to remind you how grand life can be?

Sweet 16

Today marks 16 sweet weeks after surgery to implant the Enterra, a gastric stimulator. I have to say it has been on my mind all day long just how far I have come in these 16 weeks. Then I start to think how far I have come since this time last year. Although this path has been long and often painful emotionally and physically, as I look back I can see how every person, every doctor, every step along the way has been so crucial in my journey to this point.

I talk a lot about how there were not as many resources for me in New Mexico. This is a true statement. I lived in New Mexico for 30 years. Lived. My very first pediatrician was almost a part of our family. He referred me to my first internist when I was a preteen. She told us then that the big picture of my health would take time to come into view, but there was definitely a quirk they weren't catching. In college I was bounced around for a little while until a really great endocrinologist began chipping away at the pieces. Moving back to small town New Mexico had its share of challenges, but I will say this as firmly as I can, those small town doctors saved my life. They got me to specialists who sent me to the Mayo  Clinic. That opened my eyes to realize I really needed to take this seriously. I am no immortal. Those small town doctors eventually put puzzle pieces together to refer me to Dallas for this very procedure. Then, they referred me to Johns Hopkins to be sure their plan was the right plan. So whatever little resources New Mexico had, it once again is the Land of Enchantment because a few gems saved my life.

To get to the business side, for those of you interested in my progress as well as this incredible technology behind the gastric stimulator, today is a good day. Last week I had an appointment with my surgeon/ gastroenterologist and the Enterragator. I tell my husband I am like Iron Man and the Enterragator, which helps the doctor control my stimulator, is what keeps me running. I am still working on the lingo so forgive me for not talking technically about the device and what happens at the appointments that leads to adjusting the stimulation and whatnot. I have hit a plateau since my last appointment and blog post. Not to worry though, a plateau is level not a decline! I am still worth a buck, but no more. My appetite has decreased as well as an increase in nausea and discomfort. Based on that as well as what the Enterragator told my doctor, he bumped up the stimulation just a bit once again. This is normal, as with anything in your body there is an ebb and flow that we are manually trying to keep in equilibrium. The discouraging part, I have to slow down on challenging my diet and return back to "safe foods" for a while. "Safe foods" meaning things I could eat before the procedure without too much trouble. I am welcoming the nutritious smoothies, fruit bars, and eggs...not that I ever cut them out completely, but they are again replacing more indulgent meals. I suppose if anytime is a good time, now is because they have become comfort foods for me. Autumn is perfect for comfort foods.

I am getting more used to having the device in my abdomen. The pain from the surgery is starting to lessen more and more everyday. It is still a little tender right at the site of implantation. If I do too much, my stomach muscles get sore. Bending and twisting along with certain clothing irritate it. But overall, these little inconveniences are nothing compared to what I was dealing with in the past. I rarely get a distended belly anymore. I actually feel food moving along my system in a more natural manner. Gas and regularity are not an issue. The biggest blessing is being able to eat three meals a day without feeling like I ate the entire McDonald's menu in one sitting.

Thanksgiving is coming up and everyone is wondering what I will be doing. I will gladly tell you, I will be doing the same as everyone else. I will be relaxing, spending time with family, and enjoying my son's time off from school. I will not partake in the traditional turkey, stuffing, and pumpkin pie meal that most Americans are accustomed to for Thanksgiving. Too many years have past with me trying to conform to a world I no longer fit in always ending with me in tears and pain for nearly a week thereafter. This year I decided to cut myself some slack. Why am I forcing down food that is only satisfying when it is on my tongue for a few short seconds? Instead, I think I will make a meal the day before to cut down on stress. I will make something that is a treat to myself as well as my family, but it will be a feast in my sense. I am sure there will be enough left-overs for me to enjoy the next day. On Thanksgiving itself, I will join family and friends for their feasts and enjoy their company with no pressure and no misery nightcap. Maybe some Thanksgiving in the future (next year?) I can enjoy the traditional meal and if not, oh well. I will make my own traditions and still enjoy life just as much as the next gal.

All in all, I can genuinely say this is my sweet 16!

Shine

One step at a time and we find our way.  As many of you know, I have been dealing with unknowns for years now.  More recently, about 4 or 5 months ago, my condition and weight became a much greater concern for my doctors and myself.  The doctors started to push again for more answers.  It began with an idea to insert a feeding tube because most of my symptoms throughout my body were flaring up in addition to continued weight loss on an already very thin body.  The feeding tube turned out to be a no-go but that got the ball rolling in other directions.  A referral to Johns Hopkins Medical Center in Baltimore, Maryland with the #3 leading gastroenterologist/ functional medicine doctor in the country along with a referral to an internal medicine doctor/ gastroenterologist in Dallas, TX to be evaluated for a gastric stimulator.  I have trudged my way through this jungle of unknowns and we finally have a clear view, I am so proud to announce.

I was worried that I would not be able to make my uncle's memorial services after his death last month because I was feeling so awful and so weak.  God has His hand on everything.  The Dallas gastroenterologist called just days before the services and wanted to begin the testing necessary to be approved for the gastric stimulator.  I was able to attend my uncle's service as well as take care of the testing.  "What did the testing show?", you might be saying.  Well, I am in need of the gastric stimulator.  After fasting for more than 12 hours, I still had food in my stomach when he tried to conduct an endoscopy (most people move food from their stomach to the small intestine in 30-90 minutes).  A Smart Pill study was conducted as well.  It showed that food stayed in my stomach for 17 hours or more.  When the results were reviewed I was able to come home, just in time to prepare for Baltimore.

About a week after returning from Texas, I was headed in Baltimore's direction with high anxiety about Johns Hopkins and what this doctor would say.  His name is Gerard Mullin.  He wrote a book, Inside Tract, that was recommended to me a few years back.  He is a functional medicine doctor, which means he uses not only western medicine but also nutritional and holistic treatments as well.  I was afraid he was going to offer me some outrageous diet that would be impossible to adhere to in rural America or that something even more remarkable would be recommended.  To my surprise, he agreed with the path I am on.  He agreed with the Dallas doctor saying, "The gastric stimulator is a must." He went on to offer a recommendation that I see a naturopathic doctor as well as a nutritionist specially trained in diabetics and gastroparetics.  His explanation was, food stays in my stomach so long without the aid of stomach acid or any enzymes to break it down or kill bacteria.  The food ferments in my stomach before moving on to my small intestine, carrying dangerous bacteria.  The goal is to balance out the bacteria in my gut all together and with that I should feel better on a day to day basis.

So, here I am.  Five years after being sent to the Mayo Clinic thinking I was only a Type I diabetic.  Five years after thinking that everyone around me, including my doctors, were being dramatic about my health.  Five years after being terrified by hearing the words "Mayo Clinic", thinking only people who are near death go there.  I was wrong.  I was ignoring many symptoms and trying to push through.  I was the dramatic one thinking only people near death are seen at the Mayo Clinic.  Five years of diagnosis on top of diagnosis on top of life style changes and more life style changes.  Five years after thinking no one would figure out what was wrong until it was too late.  Well, guess what!  We have answers.  Not just partial answers, but the full picture is finally in view.  The full picture is now in view AND all the specialists, with all their egos, agree.  Now, I can exhale and it is such a relief!

The end result? Can you relate to any of this?  We can help each other.
I am Lauren.
I am 30 years old.
I have Autoimmune Polyendocrine Syndrome Type II (Schmidt Syndrome).
I have Hashimoto's Thyroiditis treated with hormone replacement medications.
I have Type I diabetes treated with insulin through an insulin pump.
I have Interstitial Cystitis in remission currently.
I have Epilepsy treated with anti-convulsants and natural remedies.
I have Celiac Disease treated with a strict gluten free diet.
I have Undifferentiated Connective Tissue disease treated with an antimalarial.
I have Pernicious Anemia treated with B-12 injections and an ulcer preventing medication.
I have pancreatic insufficiency treated with digestive enzymes.
I have gastroparesis currently being treated with Erythromycin, but soon to be treated by the gastric stimulator.
I have inflammatory bowel disease (not currently labeled as Crohn's or Ulcerative Colitis) currently being treated with pain management due to it likely being caused by the lack of digestion in my upper digestive tract.
I have an autonomic nervous system disorder treated with anti-convulsants as well.
I have a husband and a beautiful son.
I enjoy music, the outdoors, and family.
Learning is a passion.
I like to read.
Finding the good in every person comes naturally along with naivety, but I wouldn't have it any other way.
I am Lauren.

We have answers.  We have direction.  We have something tangible to hold on to and move forward.  I feel like I can finally accept what is going on.  I feel like I can relax and let the doctors take over.  I can settle in to a new normal.  Life is ever changing, but a life style is the hardest thing to change.  I feel ready to take on the world and hopeful that my strong mind will strengthen my body as we begin new treatment.  I feel empowered.  Five years ago, getting to the bottom of this seemed so far off, impossible really.  I struggled, I suffered, I whined and complained, I had melt-downs, I denied, I kept going, and I finally feel myself starting to shine through again.

This little light of mine
I'm gonna let it shine
Let it shine
Let it shine
Let it shine

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!

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.