Twenty days ago I celebrated my 5 month birthday/ anniversary. I had a gastric stimulator implanted on July 31, 2013. Although I have explained this in prior posts, I would like to reiterate myself due to confusion and misunderstandings along the way. A gastric stimulator is a device that is implanted in to subcutaneous tissue in the abdomen. This tissue is the fat or loose layer between outer skin and muscle. Electrodes or leads are then guided through the abdomen into the lining of the stomach. These electrodes emit electronic stimulation of the stomach muscles much like a pacemaker does for the heart. Unlike a pacemaker, the gastric stimulator does not make rhythmic motion occur in the stomach. It does allow more movement of the paralyzed smooth muscles that aid in digestion.
This confusion or lack of knowledge became very apparent to me recently. After dealing with the most horrific stomach virus I had ever seen attack my 8 year old, my magnificent immune system allowed the demon in. One minute I was fine, the next minute I was emitting everything I had ingested and more..and more...and more. I called my aunt and husband within minutes of onset and within an hour I was nearly incoherent when my aunt came to the rescue. I will cut details, but within four hours I arrived at the hospital where my surgery had taken place.
By the time the ER staff triaged me (no more than 30 minutes after arrival) I was severely dehydrated to the point where even my limbs were stiff as a board. I had never experienced or seen this. During triage, I cannot tell you how adamantly my husband and I were in informing the staff of my complicated history but more importantly the stimulator. Initially, we were treated like all other patients and herded along like cattle until they saw the level of dehydration in combination with the diabetes and we were rushed to a room.
I had called my surgeon/ gastroenterologist as soon as the virus showed its face. He was out of the office in conferences with very bad phone reception, but the office staff did alert him of my condition. Celiac disease, inflammatory bowel disease, gastroparesis, and a gastric stimulator do not bode well in these conditions. He called my cell phone as they were putting an IV in. He spoke directly with the ER doctors to instruct them on what to do. He asked that they admit me for the night to be observed to make sure I was stable, but ultimately left the decision up to me telling the ER doctors I was a good patient who knew my body well (pat on the back). I was given fluids and medicine to stop the dirtiness and pain. After about 4 hours, the ER doctor checked in on me hinting at getting me to a bed upstairs, but I stood my ground and asked to be discharged to rest at home and be with my son. That's just what I did.
The days after I began having a strange revelation. All these years of disease and diagnoses and I still viewed myself the same as I always had. I mean, don't all of us miss the gradual changes as we grow and age? Suddenly I realized, what could have taken my son three days to get to (severe dehydration) yet never seen because his treatment came sooner than that, only took my body less than four hours. I was in such a state that I was unable to walk, struggled to talk, barely hanging on to consciousness let alone coherency. And here I am a week and a half out still struggling to balance my blood sugars and gain some normalcy in my gut. Rude awakening.
For the last 8-10 years I have complained of symptoms I had no idea were related to gastroparesis. I had never even heard of this condition before. I had these symptoms since I was young, as long as I remember. As I got older they got worse. I was diagnosed with Type I diabetes at 20 years old, which is typically linked to gastroparesis when management of the disease is lacking for a long period of time, often years. I believe these symptoms were not followed up on because I was young, my diabetes was/ is under good control, and it is highly unlikely. Thank goodness, the greater plan got me to doctors who found a good path for my treatment.
I have been through the ringer with these diseases. It has been one on top of another since the age of 12 or 13, but the snowball grew quickly these past five years. Moving from my college town back to my small hometown for a slower pace of life, thinking that would help somehow turned out to be a blessing and a curse. At the time I only knew of Hashimoto's disease, Type I diabetes, and Interstitial Cystitis. I had a baby boy and suddenly began having unexplained seizures. I was sent to the Mayo Clinic and the answers started slowly showing themselves as time went on, but those small town doctors often did more than they realized by giving pieces of the puzzle one at a time making it easier to see the bigger picture of what was necessary.
For the longest time, even now sometimes, I thought I was a victim and couldn't catch a break. I will be honest and say that it is difficult to manage 10-12 chronic illnesses at one time. On good emotional days, I see this as a great learning experience. On bad emotional days, I feel as though I cannot catch up or continue to juggle so many balls. I am lucky as a patient to have some very useful background knowledge of psychology and the medical field. Add to that, being the patient and knowledge goes up exponentially. Intertwining the science, logic, faith, hope, and emotions is a beautiful disaster.
I have been mentally motivating myself since this awaking has begun. When the days are physically tough they become emotionally tough and this cycle is hard to break. I enjoy walking or doing yoga for overall health. I could go into the details of how this aids digestion with good blood flow, gravity, and massages the digestive tract....but I won't (wink). This morning as I was walking and feeling down because every once in a while the routine falls out of place and our bodies pay for it. Missing pills here and there. A bad infusion sight with my insulin pump leading to grossly high blood sugars. All of this is under my control so I am really hard on myself when I make a misstep. This morning I thought 'Be realistic in the moment'. Of course, with two of us in the household incredibly shaken by this stomach bug, my husband just starting a new position at work and all the while trying to tend to us sickies, there is going to be some upheaval. 'Don't be so hard on yourself'.
As the thoughts were running through my head, the past few weeks kind of circled as well- good and bad. All the acute illness layered on top of the chronic illness layered on top of emotions and fears had my mind reeling. I realize that I often get stuck in my head. This tape keeps going when my days are tough. These thoughts take me too far in to the future with all these 'what-ifs' or 'statistics says' only bringing me down further leading me to try to take tighten control of what I am facing. Do you see where this is going? That's when it gets overwhelming and my mood is forever stuck in this terrified, determined rut. I am in this rut and the world is still going on around me as if nothing can stop it. You know what? Nothing can. That's when my mind said 'Be in the moment of what is really in front of you'.
While I waste time stuck inside myself trying to navigate this terrain, I miss the things that are so crucial to life and happiness. My son's contagious laugh every time his Daddy does something even remotely crude or embarrassing or when he sees a funny commercial. My husband's insatiable need to make jokes at ever turn while I try to act as if nothing he does is funny anymore. My own incredible accomplishments that I do not see while I am longing for those of my peers. The beauty that is showing itself outwardly as my body is gaining nourishment. All the new and interesting sites to take in around us in this new environment. So much to be seen and enjoyed, why waste time stuck inside the darkness? I realized that this is what may be my biggest fear. The moment.
All my life there has been a goal, a door, a window to reach. As a child you go through school waiting to get out of elementary. Then, excitedly making it to middle school and going through changes that allow more freedom and excitement anxiously awaiting high school. In high school, new love, new privileges, new experiences all leading up to college or a job. At each stage, working to make it to that next level. The whole way through it, we are planning our next move to get us to that next level. As a child, adolescent, and young adult we are so wrapped up in ourselves that we often live in the moment without a care in the world. I was abruptly stopped midway through this path that most of us take. I had to stop focusing on the joy and the path to suddenly focus on mortality.
Well, no one wants to face their own mortality. Did that become my Achilles heel? The moment at hand suddenly became too scary to face so my coping mechanism became ignoring it all together hoping to move past it. The unfortunate thing about this coping mechanism is that it is horrible and more importantly detrimental. Losing site of what is right in front of you is blinding. So I say, (in the great words of P!NK) stare fear in the face and say I just don't care.
I still have goals. Maybe not traditional but goals nonetheless. I still have dreams. They are not the dreams of my high school self nor my college self, but my 'now' self. I still have stages and levels yet to be reached. I still have faith. I still have hope. I still have joy. I still have love. What I don't need is to forget all that I still have while focusing on all the don't-haves.
I wrote a post a while back talking about my dad and sister. My dad has passed and my sister lives in California. They both have Type I diabetes. I do not know or cannot see clearly if this disease has precedents over the others. To me, it is the biggest after APS Type II. Possibly because I have seen it in them and it has terrified me and haunted me my entire life. I miss them both terribly ALL THE TIME. In that post, I wrote about how the longing is so painful and the disease so devastating yet when I shift my perspective I see how this is one thing that ties us together no matter our distance. This is one thing that we all understand about each other in unspoken ways. That perspective is what I have held on to since that realization. (Sometimes the greatest things come from that darkness)
Deciding that I am the champion here has lead me to this point. Embracing the battle scars I have on my belly and gold medal you can see poking out of my lower abdomen. Looking at old pictures of when I was a star athlete or competitive long distance runner shows me what I was when I was considered to be in peak physical condition. Knowing I am stronger now yet thinking 'I can get back to that'. That, in this case, meaning weight or size. Still telling myself 'but it is ok if you don't' knowing that as long as I continue to do the best I can, I cannot get down on myself. I can't expect more from myself than I do from others. My victory badge will remind me of all that keeps me grounded.
Within days of getting my victory badge it began taking on a new meaning. I have been contacted by others who share my struggle. Some of them even asking me questions of guidance and inspiration....ME?! My blog, my words, my life in the flesh is reaching people and making an impact. The thing I had strived for, thinking it would be done in the medical field with scrubs or a white coat, has been replaced by my inner thoughts and outward strength and resilience. That is the best feeling in the world. This victory badge not only ties me to my sister and dad, but to all of those who share my struggle and victories in their own lives. My medical alert, my victory badge, my connections, ME.
