To begin with I am your average mom of 4 active kids that lead very active lives. Through the years I have been known to have more than one major melt down due to over scheduling, over commitment and just plain ole inability to tell others no. At one time I was crazy enough to be the leader for 3 girl scout troops at ONE time and if that's not enough madness I have even served on 3 different PTA boards AT ONE TIME! I even have a cub scout leader title and more than one major party type event under my belt. If you hear of it and my kids were involved you can bet I was running it, organizing it or otherwise involved in it.
In September of 2008 I began having a nagging pain in my left abdomen and began feeling badly enough that I decided to make an appointment with the new family doctor that had taken over the practice when the previous one retired. I sat for over an hour to have my temperature taken and endure the humiliating weight stop on the way to the exam room. The doctor finally strolled into the room to take one glance at me and ask me what stress I was under. Not quite understanding I began to explain things going on in my life and as soon as I mentioned I was helping some members of my family displaced from a recent hurricane he said that's it. You're anxious is what he told me as he wrote a script for xanax. I was confused and dumbfounded as he patted me on the back and referred me to the "other side" of his practice.
The "other side" of the practice, I soon discovered, was the rehabilitation portion of the practice. I spent a little over 2 months visiting the therapist two to three times a week and while I will say that I loved having the little electronic thingie placed on my neck to stimulate the muscles as well as the massages from the funny tech I can't say it did much else for my original nagging pain in my abdomen.
One fine day in November 2008 was really just like any other for me. I was bee bopping along with my usual blur of speed. I had volunteered at the school and had came home to work (I worked from home at that time). I greeted the kids as they were coming home from school and was trying to get dinner together when the most horrible pain sliced through the left side of my abdomen. I completely fell to the floor and screamed in pain.
The pain was like nothing I had ever felt before in my life and let me tell you that I gave birth to my 4 children with very little drugs and definitely without one single epidural. The pain began under my left rib cage in my back and shot around the side up under my stomach area. With each breath I took it felt as if a knife was being twisted and jabbed in farther.
I was rushed into the ER and admitted with what would be my first of many bouts of diverticulitis. I was told by doctors that I was really too young to have this health issue and probably wouldn't have any more flare ups for years to come if I had any at all. But in hindsight I can now tell they did cover their asses by telling me that if a person has more than 3 flare ups in two years then surgery should be considered due to the high probability of the colon bursting at this point. (BURSTING? WTF?)
Well, anyway I was treated with IV antibiotics and released from the hospital 3 days later. I bounced back rather quickly and was actually quite annoyed with the forced time out my body had imposed on me. Thinking that I wouldn't have anymore flareups if any for years to come I went on about my life.
Over the next year I went into the hospital several more times with flare ups and began the roller coaster of what I sarcastically call the interviewing and firing of doctor after doctor. Each doctor had their own thoughts and I went through a battery of tests and procedures. Out of sheer frustration I began to research diverticulitis and wondered if I knew more than the damn doctors that sent me for CT scan after CT scan.
Through research I stumbled upon the Gluten Free Diet. I researched until it felt as if my eyes would pop out of my head in protest. In April, 2010 I made the bold choice to go gluten free. Many of my life long symptoms began to clear. No longer did I experience dizziness, blurred vision, odd pains throughout my body and most importantly my abdomen pain seemed to subside.
Well, the abdomen pain subsided long enough for me to figure out that gluten was NOT the source of pain for my gut but it WAS the source of the other pain aliments. Therefore, I had the joy (NOT!) of educating a hospital cafeteria on a gluten free diet on a few more stays caused by the diverticulitis.
(YES! I really was in the hospital THIS many times!)
Finally, sometime in May 2010 I stumbled onto a GI doctor that I felt "got" me. He shook his head in what I felt was disbelief as he read my chart of the past year or so. I had been through no less than half a dozen CT scans, a colonoscopy, an endoscopy, and even a test to check my kidney function. Together we came up with a plan of action. The plan was to start from the beginning and cross off things along the way to ensure we cover EVERYTHING that could possibly be wrong with my gut. I remember a huge sense of relief wash over me as we shook on this plan.
The first step was to stop at my OBGYN and get a clean bill of health there seeing as how I had not been very diligent about check ups with any doctor much less my OBGYN. I mean I had my babies and my tubes were tied. So, what did I need an OBGYN for right? Thinking all was ok there I scheduled the appointment but soon discovered that would be a mini journey in itself. I ended up with a surgical procedure to clean out my uterus for old scar tissue etc. that had built up over the years from child birth, infections etc. As if that wasn't enough during the surgery the OB found that my left fallopian tube was strangling my intestine and a general surgeon was called in for repair.
I left that procedure with a definite feeling of missing pain in my left abdomen and thought that the problem had been solved.
Soon, as in not even 3 weeks later I was back in the ER with my diverticulitis. Another stay at the hospital for IV antibiotics and was then released. By now it's nearly Thanksgiving 2010 and I was determined NOT to miss the holidays with my family. So, I suffered through an infection that never quite went away but instead I masked with ibuprofen and tears in my sleep. By the time the week of Thanksgiving arrived I knew the night before our Thanksgiving gathering that I was going to the ER as soon as the next morning arrived. I silently suffered through the day, throwing caution to the wind and eating whatever the hell I wanted thinking I was checking into the hospital the next day anyways.
Sure enough, Friday morning promptly at 8am I
REALLY????????!!!!!!!! Was he fucking serious?????Was I in the twighlight zone or something?
At this point I was screaming mad. I gathered all of my strength, took out my own IV and left the hospital with a really nice Fuck you to Dr. Dumbass. The next morning I drug myself into my appointment with the GI doctor and was met with complete disbelief from him that a doctor would have released me in that condition. He proceeded with the information that he was going to admit me to the hospital that moment under his name and get treatment for me.
Now, I must take a few moments out of this story to explain to those that weren't a part of this past year of hell. I seriously do not know how my children would have been able to continue with daily life if I had not depended on my dear friend Malissa. When I say depended I mean laid on top of her and became an extra mooching family member she could not get rid of. With Chuck being out of town with the railroad every 3rd day she made dinner for us, shopped for me, drove my kids to and fro and otherwise stepped in as Janet the mom. Without her we would have fell apart.
Sitting in the GI doctor's office near what I realize in hind sight was death I truly could not bring myself to ask my friend to pick up my kids from school one more time. I had already asked so very much of her over the last year. Hell, I was surprised that my kids remembered to say Malissa after the loving nickname of Mama Malissa we had dubbed her. I just simply couldn't ask her for more help that day.
The doctor grudgingly made me swear I would go straight to the pharmacy and get the scripts for 3 different antibiotics he had written for me as well as make an immediate appointment with the surgeon. On top of that I had to promise to call him on Thursday (two days later) to check in with him personally. I later found out that when I left the office he called not only the surgeon himself but he also called my new primary doctor. By the end of the day I had 3 doctors offices calling me to check up on me at home!
My appointment with the surgeon came and surprisingly they wanted me to go into surgery the very next morning! What were they crazy? I had to make plans! With much back and forth bickering the date was set for January 5th in the new year. I wasn't about to lose out on my tradition of having a family dinner for my birthday (January 2nd) with laying in a hospital bed!
Again, hindsight kicks in here and I now realize why they wanted to get me in so quickly. On January 6, 2011 (the day after my surgery) my husband and I were shocked to hear from the doctor that sometime within the last two visits to the hospital my colon had actually burst near my left ovary. This caused a cyst to form on the ovary and thankfully I had the intelligence (or desperation?) to sign the waiver to have it removed before going under the knife. Both were clearly infected and causing major problems in my gut.
Here I sit a little of two weeks out of surgery and realize how very close to taking the walk of death I actually came. It's scary I admit but honestly what is even more scary is the number of supposed trained, licensed doctors I encountered along my journey. If I had not had the courage to stand up to them and fire them due to the lack of satisfaction regarding their diagnosis's it's a good probability that my kids would be calling Malissa Mama for real.
Take this story as a lesson learned and always, always advocate for yourself. Do NOT settle for meritocracy. If something about your health care doesn't feel right, or you don't like your doctor do not settle! Find a new doctor, ask questions and don't stop until you get an answer! Your life depends on it!
This story is dedicated to the following people:
Charles: My husband who never gave up on me, always held my hair when I was puking and still loved me!
My kids: Who were always so brave and never complained about eating dinner again in the bedroom with me so I wouldn't feel alone.
Malissa: The most unselfish woman I have ever met in my life who was more than happy to take my family on as hers and love them unconditionally.
And to Doctors Earp, Jackson and Dillworth for being what a doctor is supposed to be! I owe you my life.