The Day We've Been Waiting For

“We dream to give ourselves hope. To stop dreaming - well, that’s like saying you can never change your fate.” ― Amy Tan, The Hundred Secret Senses

I waited to post until today because this has been the day so many of us have waited for, the day my mom sees a doctor that has diagnosed and successfully treated a patient with SMA. It seems like all of our hope and answers were relying on this doctor and his diagnosis. Unfortunately I was not able to be with my mom for this appointment and at this second I am still a little in the dark and do not have all of the answers. I may never have the whole story of what happened in that office. My friends knew how stressed I've been all day and that I've been anxiously awaiting news. I had such high hopes...at this moment it feels like we will never have any answers. The doctor in Tampa stated he did not believe my mom had SMA Syndrome. I guess there wasn't enough evidence to support our previous diagnosis. What I want to know is why her SMA is at a 10 degree angle, shouldn't that be causing some of her pain, that supports the SMA Syndrome diagnosis, but because some symptoms were not present he has decided to rule it out. He wants to run more tests on her, but those wont be done until Nov 5 which means more time waiting, more time stressing, more weight that will be lost, more depression, and maybe even the desire to give up. This doctor thinks it might have something to do with the pancreas, but didn't explain further what the problem might be or why it is causing all this pain. 

I feel hopeless and upset that there is nothing I can do to help out my mom. At this point part of me wants to stop dreaming. My family is having such a hard time and this is just another blow to us after news of my mom's cousin. My mom is sick and no one can figure out what is wrong while my Aunt was given only a 15% chance of beating her cancers. How can you find hope when doctors are not providing answers or solutions?

The Emotional Roller Coaster

"Don't waste a minute not being happy. If one window closes, run to the next window-or break down a door." -Brooke Shields 

  It seems like we had looked for everything imaginable and seen so many specialists, but slowly started to face the reality that we may not ever find out what was causing my mom all her pain. She started telling my dad, "they'll find out what's wrong with me when they do the autopsy." My response was that we'll just put her under and do an exploratory surgery. From May until August the doctor visits had stalled, but the family continued to do their own research to see if there was anything we could find.Then one day we got a call out of the blue from my grandmother. An ultra sound tech, who works for my grandmother's doctor's office, came up with a diagnosis. The woman told us she thought my mom might has SMA Syndrome, better known as Superior Mesenteric Artery Syndrome. SMA is very rare and there only about 500 documented cases, but unfortunately many doctors do not believe this is a real syndrome which is an issue we ran into at the Mayo Clinic. Despite Mayo ordering more testing, "Approximately 0.013-0.78% of barium upper GI studies evaluating for superior mesenteric artery syndrome support the diagnosis." (http://emedicine.medscape.com/article/932220-overview) SMA Syndrome can be caused by a trauma incident or caused over time by someone that's always been very thin. Learning that a bad accident could initially trigger this caught my attention. Remember, in January 2011, my mom was in that bad car accident and then lost weight. The fat pads hold up the mesenteric artery keeping it at a minimum 50 degree angle. When weight is lost, there is trauma, or compression on that artery, it pushes on the duodenum which then pushes against the spine causing pain. All the pieces began to fit, but my mom remained skeptical. Thankfully we were soon headed back to Florida and had an appointment with "Dr. Death."

Sept 21, 2012
I went with my mom to meet "Dr. Death." That man drove me nuts. He didn't seem to know my mom's history despite her seeing him for almost a year. He asked her several times if she drank or smoked, asked what medicine she was taking, and even with us trying to show him the article on SMA Syndrome he basically brushed us off. In the meantime the ultra sound tech had been in contact with "Dr. Death's" assistant and together they figured out what test my mom would need to maybe show the SMA. I'm still not sure what made "Dr. Death" decided to do this test. Maybe it's because there were 3 women sitting in the office in tears because no progress was being made. Either way I'm thankful that this new CT scan was ordered. That following Monday my mom went in to get her CT scan done. I know my stress level was through the roof and I can't imagine how my mom was feeling. By Monday afternoon we received her results. The radiologist determined that nothing was wrong with her. I was still a little hopeful because I had read that most people didn't know what SMA was or how to recognize it in tests. My grandmother's office called him back that same day and asked him to specifically look for SMA Syndrome. We needed the results back asap because we were going back to "Dr. Death" the very next day.

Sept 25, 2012
My mom, grandmother and I were headed back to see "Dr. Death." We still didn't have an updated report from the radiologist and things were once again looking like we had hit another dead end. About halfway to the doctor's office we received a call from my grandmother's office and when I heard her on the phone I knew...the radiologist had changed his report. After re-examination the radiologist determined that my mom did have SMA Syndrome. Not many can understand that feeling you get after finding out what's been causing your mom so much pain. Unfortunately the next hurdle was dealing with "Dr. Death." Even with the revised report in his hands, "Dr. Death" continued to ask my mom if she drank or smoked, but this time asked if she was anorexic or bulimic. Are you freaking kidding me??? He caught my grandmother giving me a look, but we were beyond caring what he thought at that point. While we were in his office he was on google looking up what SMA Syndrome was and what to do to treat it. He thankfully decided to refer us to see someone at Shands and said he'd be willing to put in a feeding tube if my mom wanted. Meanwhile my mom was researching her own doctors. There was a doctor at Mayo that we wanted to see, but ended up with a vascular surgeon. He was the one that has upset me the most. He made me feel like he didn't care that my mom was in pain or that she had this diagnosis. He was the one that said many doctors do not even believe this is a syndrome. He ordered more tests which annoyed me because I wanted something done. As I quoted earlier the barium tests will rarely show SMA, which is what happened in this case. I felt like more time had been wasted by another doctor that didn't seem to care. 

In the meantime I'm trying to stay positive for my mom and just trying to help her in any way that I can. It's difficult to see her struggling and not eating. I'm always trying to watch her and make sure she's okay. I rush her through stores because I know being on her feet too long will trigger the pain. I fall apart when I see her not eating or knowing she cant keep her food down. 

At this point I'm looking forward to Oct 15th. My mom is headed back to Florida to see a doctor in Tampa that has diagnosed and successfully treated someone with SMA Syndrome. I pray that he has the answers we are so desperately needing and hoping for. No more closed doors or windows for us we need a resolution with positive results.

The Many Answered Questions, but the Largest Remained Unanswered

“Every sickness has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it.”―Siri Hustvedt, The Shaking Woman, or A History of My Nerves

As promised, this is where things really began to just fall apart. Around November 2011 my mom started losing weight. Doctors just brushed her off saying she must be stressed over my brother's deployment. By the time January rolled around her abdomen was really bothering her. Tests were done and gall stones were discovered. Everyone thought this was the cause of her pain so her gallbladder was removed. Unfortunately this didn't solve the pain issue. My mom was still hurting on her left side. More tests were done, but we had no answers. I think one of the hardest things up to this point was receiving a phone call early one morning from my grandmother about my mom feeling really sick. My grandmother was in tears and didn't know what to do. She was really worried because my mom hadn't been eating and lost more weight. A few hours later I found out she had been admitted to the hospital. By this point everyone knew it definitely was not stress because my brother made it back home from Afghanistan. My mom was referred to see doctors up at the Mayo Clinic in Jacksonville, but like every other time, we were left disappointed. Several tests were run from MRI to CT scans, to blood work. I remember my mom going in for a P.E.T. scan. It's horrible to say, but I was praying for something even if it meant cancer because we would then finally know what was going on with my mom. I mean...who prays for cancer? Thankfully an ultra sound showed something. A gynecologist discovered pelvic varices that were pushing her organs to one side and referred her a surgeon. The surgeon, at first, didn't want to preform the surgery. He believed that they weren't bad enough. Thankfully I was able to be there for that procedure. The surgery had taken longer than expected, turns out the varicose veins were far more extensive than what had originally shown on the ultra sound. We were hopeful that this would solve her pain problem and were told she should feel a large amount of relief in two weeks, but again, we were disappointed. Meanwhile my mom had been seeing a gastroenterologist who didn't seem to believe anything my mom said about having pain after eating. I think this doctor just blew her off and thought she had an eating disorder. Once my mom was told, "have a nice summer" by this uncaring doctor we decided to write her off. Which makes me think of "Dr. Death." Dr. Death is a GI doctor in Ocala. During one visit he asked my mom about 5 times, in 20 minutes, "do you drink? do you smoke? are you anorexic or bulimic?" I wish things were that simple. Every test continued to return normal results, she didn't have cancer, so what was causing all of the pain?

It's so hard to watch someone you love feel so weak. To know that you must limit your time running errands because your mom will start to feel horrible. It's torture seeing someone you love in pain, to see how hungry they are, but must make a decision...eat and be in pain or starve and lose more weight. How do you comfort your little sister that tells her mom, "I'm afraid you're going to die," when you are just as worried. So many people were unaware of what we were going through. My dad's family didn't even know that my mom had been so sick until a few days ago.

I just want to take a break here and thank everyone that spent countless hours reading hundreds of articles to try and figure out what was causing my mom so much pain. If it hadn't been for their persistence I honestly believe my mom would've given up by now. Even after someone came up with a great theory she still didn't believe that was something she could have. 

Bad Things Happen in 3's and 7's

"I believe that bad things happen in life to teach us how to look at good things in a whole new light."-Unknown

For as long as I can remember I've always believed that bad things happen in threes and sevens. I always wish this wasn't true and the best thing I've been able to do is to stop counting. After my grandma was diagnosed with breast cancer I tried to deal with life the best I could. I put a lot of my focus into coaching with my summer track club. I love coaching, I love my athletes, and I enjoy being able to focus on that and get my mind off of life's stresses. I met a great guy during my last semester of college. He was my upstairs neighbor, Tron, and as much as he could annoy me, he always knew the right things to say. This guy had a 6th sense, always knew when my cookies or brownies were done baking, and would show up at my door with his glass of milk ready to steal some treats. :) The most important thing Tron taught me was not to sweat the small stuff, something I still struggle with, but I know it can be a major waste of time. Tron and I didn't always agree on everything, but I knew he was always there for me. He was a great person that I could talk to about my grandmother's cancer and unfortunately in July 2011 he passed away. I know life has a way of working out and I was so thankful I was able to say goodbye to him. Two weeks later we had to put down my dog of 12 years. At this point I was beyond upset. I had lost a great friend, a sweet dog, my grandmother was battling cancer, and the awful car accident was still weighing heavily on my mind. You would think that after eight months of one thing after another life would turn around, things would get easier, but it didn't and this is where I regretted my decision not to move to Florida. Instead I found a coaching job in Houston and a great retail position. My brother had left for Afghanistan and if you've never had a loved one overseas you'll never understand the additional stress, but I was still, mostly, holding it together.

Now, bear with me, because we are now getting into the roughest part I think any child could go through...the thought of losing a parent.

Confusion, Uncertainty, and Another Hurdle

"Sometimes God has to break us to make us. It's just a bend, it's not the end. We're all like glow sticks, no matter how much we're bent and broken our light still shines." DeAndre Carswell

One of the hardest things for me to talk about, which is why I didn't write about it in the last post, is what my sister went through the night of the crash. She had been living with my grandparents for a year and a half. Immediately after the accident happened, she woke up, but everyone else was still unconscious, there was blood everywhere and she thought everyone else was dead. I can't imagine what that would've been like. My heart still aches for her and as her older sister all I've ever wanted to do is protect her. She doesn't talk about it and I'll never ask. I just hope she knows that I'm always there for her. Thankfully, everyone did recover from the accident and we began to move forward. My mom moved out to Florida, my dad started a great, but very demanding job, and the only thing looming was knowing about my brother's upcoming deployment overseas. Once my mom was settled in Florida she and my grandmother went on a diet and lost a good amount of weight. I was so proud of my mom for losing the weight, looking great, exercising and keeping it off. I felt like things were really starting to improve in our lives, but life knocked us down once again. I received a phone call and learned my grandmother had breast cancer. Without the help and support of a wonderful coworker I'm not sure I would've made it through that tough time. My mom's cousin had died the previous year from cancer and that was still very fresh in everyone's mind. I was considering quitting my job and moving out to Florida to help with everyone and now looking back...I wish I had because more health issues were about to hit our family.

*On a side note, I recently learned my mom started a blog. She is unaware that I know her blog site, but I like it that way. It's a way to see what she's really thinking, feeling, and going through since she dont always open up to me. I know it's a way of protecting me.

The Beginning

“No man ever steps in the same river twice, for it's not the same river and he's not the same man.”

-Heraclitus

Everyone has a story and every family goes through tough times, but it's how we deal with what life throws at us. These posts are just a way for me to get out what has been on my mind for almost two years now. It's a way for me to reflect and share my thoughts and feelings that I might not have expressed otherwise.

This entire journey began on January 1, 2011. Little did I know how much life was about to change for myself and my entire family. I believe most people have their own little rituals and in my family we always have a spoonful of black-eyed peas on New Year's Day for good luck in the new year. Now, I hate black-eyed peas and this year I was going to skip on the spoonful. I had already been out to dinner, was headed to bed, but at last second I decided I better eat some. My thought was "better safe than sorry." I know it's a stupid superstition and there's a plan for everything, but I'm glad I sucked it up and had a spoonful. 24 hours later my dad and I received a phone call from a hospital in Florida. My mom was calling and telling us there had been a bad car accident. She wanted us to try and find out where my grandmother had been taken. I'm not sure how much of that night she remembers, but the thought of losing a large part of my family is still sensitive. My grandparents, mom and 13 year old sister were headed to see the baby horses around sunset. They were trying to cross a dangerous intersection when a truck t-boned them. Both grandparents were care-flighted and my mom and sister were taken by ambulance. The driver of the other truck actually saved their lives with some quick thinking. He managed to turn his truck just enough that it struck between the two doors instead of directly on. Little did we all know how much damage that accident would really do in the long run.