I have become accustomed to the rough choppy waters of living with chronic pain, fatigue, and more due to the uncertainty of day to day life with chronic illness. Waking up feeling awful, is not an unknown reality. Feeling decent enough to attempt living and not just existing, just to pay the cost later or without notice become overcome with symptoms is not unfamiliar either. Obstacles, pretending, making difficult choices, weighing risks over benefits, all are part of my now normal routine. It’s been over 6 years since I’ve been able to depend on my body’s response to experiencing life. Granted there have been some extremely rough waters to navigate. Unexpected swells that sent me rocking, some that have attempted to flip me under or cause me to capsize. 

During these turbulent conditions I was able to hold on, and while difficult and challenging, even if momentarily knocked down, I was finally able to regain my footing and remain upright. Surviving the unsettled and dangerous waters to slowly drift into calmer waters. Dangers still lurking around, but also able to relax a little and enjoy some of the beauty around me as well. From sunsets to sunrises, warm sun on my skin, a few clouds here and there, and the clean fresh scent reminding me that life was/is still worth living. Stormy sea conditions were still present, and not forgotten, yet were not right on top of me, weren’t pounding on top of me, all of the time. I was actually becoming able to navigate semi-safely, within limits of course, to avoid some of the storms. At times choosing a path that led me to wavy, uncomfortable, choppy waters of short unwanted storms that I knew would eventually be put behind me and a part of my past. Skills and strategies were successfully used to control the impact that the unwanted mini-storms would have on me in the “big picture.”. 

However, at times, the paths before me were not as clear. There are times that I have been caught off-guard and seriously unprepared. Recently, I felt that I was on the right track. Not perfect by far, but more acceptable. Bounced around, fatigued, still symptomatic, but choosing certain situations that were more risky to be able to enjoy some views and experiences of life with my family along the way. Mentally striving and alive. Aware that I had to be cautious and careful, not completely smooth sailing, but definitely more manageable. Thinking that finally, with support, I was figuring some things out. I did not have to sit completely still, anchored down 24/7 to remain “safe”. I did not have to completely trade my quality of life for quantity. I could take short rides to explore my surroundings, relax, and authentically smile with a sense of achievement prior to returning to my dock to rest and refuel for a few days. These days or weeks of recovering, resting, refueling, and preparing for future outings were not only acceptable and understood by me, but encouraging and peaceful for the most part because I could visualize and look forward to future outings being a possibility while also retrieving positive memories while recovering. A reminder that the consequences were at least worthwhile. Sickness and limitations were still part of my life, every single day. But listening to myself, recognizing and avoiding most dangers and not expecting too much of myself, helped build more patience when having to ride out the windier wavy waters, whether expected or not, whether when living life or while anchored down.

Just as I was gaining confidence and becoming braver, testing my limits more, and taking more risk - even if just for a day or two - a massive storm formed around me. It was as if I was trapped at sea, white caps crashing all around me, out of reach of a safe familiar place to dock. I was left feeling confused, scared, and lost. At times felt as if I had been capsized with raging waves surrounding me. My sense of safety removed, no correct choices before me. It didn’t matter which way I turned or considered treading, every direction had waves crashing hard enough to destroy me. It was almost as if I had to choose which path of destruction I preferred. Did I want to go against everyone else and fight for a new line just to risk my life for a dangerous life-threatening infection, or simply give in and literally become a shell of myself,  just dangling in the waters hoping the current wouldn’t overcome me? Partially waiting for me to completely fade away helplessly, completely missing out on the chance to reasonably experience life in spite of everything else. 

Dangling in fear that I would lose my grip completely. Part of me actually wanting to let go. A larger part of me reaching and grabbing for anything that may help me remain above the surface while feeling as if I were slipping further and further under the water. Bobbling in fear of being stranded alone and empty, no meaning left, just here until I completely disappeared. Wanting and desiring so much more! Knowing that I can’t let negative thoughts, regardless of how realistic they may seem at the time, or my fears take control as the weight of them will without a doubt pull me under. Also knowing that allowing myself to hold onto everything that I’m missing, blaming myself for where I’m at or even for where I am not at, hating parts of me that I don’t understand and are unable to understand or control, would not be beneficial as they too would do nothing except pull me deeper and deeper underwater. Eroding the part of me that wanted to remain. Regardless of my knowledge, when dangling and treading in the cold violent unstable water, it’s easy to try and escape by holding on to anything that surrounds me, positive or negative.

Most of the time, I try to reach for things that will keep me hopeful and above water. I know that I don’t want to drown, don’t want to die, and don’t want to give up. I just want relief. I just want to be me, the me that I can respect, share, and enjoy at times. The me that has meaning and purpose, can be proud of and at ease with. The me that can create positive memories with my children and family. The me that exists beyond my illness and symptoms. Time and time again, I know that there are only a few things that help me survive during these times, which helps keep me afloat when everything else seems to be hastily dragging me under. They are not immediate “cures”, they don’t offer me complete safety at the moment, but they help me through moments, or if fortunate, days at a time. Medically, and mentally, my current medical team, especially Dr K and Dr S help me stay afloat if I let down my guard and allow them. Spiritually, my faith keeps me going. Part of me still believes that everything happens for a reason. I know that God is present, and even though I may never understand what His plan is or why, I'm confident He has a plan and is always by my side. When His plan for me is over, then so will my earthly life.

My family, especially my children, are monumental in keeping me afloat. THEY are what I think about when I’m at my lowest, thinking about how much they mean to me, how much I love them, how I don’t want to do anything that will cause them additional worry or pain than I’ve already caused them. Rethinking (and at times rereading or looking through photos) of the wonderful memories that we have shared together as well as the horrible ones that I have been able to overcome with their assistance (even if they have no idea of how critical they have been at pulling me through). But I don’t just think about the past, because sometimes, as positive as it can be, it can also be a reminder of times I miss so much. I try to balance my emotions by also thinking ahead to the future. While also tricky at times because it’s easy to get sidetracked with what I can’t or won’t be able to do anymore, I try to focus my eyes on the present and future possibilities of life with them. A desire to be here for each of them currently, experiencing life with them and through their eyes and accomplishments, as well as wanting to be here to witness their careers and hopefully have an opportunity to one day be a meaningful part of my future grandchildren’s lives as well, if I can make it that far. My children are my life and I am willing to survive any obstacle for them, no matter how difficult or painful it is on me. (Other things such as music can be a helpful distraction momentarily, helping me reground myself, deafen negative thoughts, and refocus on what’s really most important to me.)  Honestly, IF it wasn’t for how much I love my kids and how proud I am of the people that they are and are becoming, if it weren’t for them wanting and needing me to be a part of their life (regardless of how I feel), I don’t know that I would even bother trying anything anymore. They accept me and love me for who I am, even if/when I don’t. 

Storms from chronic illness and life may knock me back and test my strength and will, but God, my family, and a couple of caring doctors are my lifelines if I just trust them and myself enough to reach out and hold on until calmer, more serene tranquil days can arrive. (I just pray hard that I don’t cause additional weight or strain on their lives in the process or meantime.)

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At the end of July, I was hospitalized once again for a central line bloodstream infection. I had a PICC line at the time so I could stay hydrated. My regimen was to infuse 1.5 liters of IV Lactated Ringers 3-4 times a week. Out of the blue, on July 26 and 27th, I started having severe muscles spasms throughout my body, rigors that had my body shaking uncontrollably, and intense chills that sweatshirt, heating blanket, and heating pad couldn't even touch. 

The first time this happened on Friday night was scary, as every time I've had these symptoms, I've ended up hospitalized for central line blood infections. I tried to avoid and find excuses of what else may have been to blame for how I was feeling, as an infection and another hospitalization was the last thing that I wanted. When it happened again on Saturday night, I knew the possibility of an infection was becoming evident, so I reached out to my GI doctor. Sunday, I finally gave in and visited the dreaded emergency department. 

As I explained my symptoms, I felt absolutely horrible. I made them aware that previous central line infections have been the source of these awful symptoms in the past. In addition, I went ahead and let them know that both my GI and I felt as if blood cultures needed to be drawn. They followed the suggestion and also took additional labs, which led to chest x-rays and a CTa. 

Because of my previous infections, they felt it best to keep me overnight in the observation unit. The admitting doctor expressed how confident she was that I did NOT have an infection this time. She thought it was probably just a little virus, as I was not running a temperature and not in distress while there. I responded to her by telling her that I hope she was right, but from my experience, it was likely going to be an infection. 

The following morning, I learned that my cultures were indeed positive for klebsiella, both from the line itself and from the peripheral (arm) draws. A hospitalization and PICC removal was in my future, along with a difficult decision. 

Due to my susceptibility of infections, my hospitalist, the infectious disease team, and my personal gastroenterologist all felt that not replacing a central line would be in my best interests. Having a new line was more life threatening at the current time that battling dehydration daily. This time, I had no rebuttal as my body and mind is tired of fighting infections. My family and I agreed that I would attempt to be creative and find a new way of receiving hydration. 

Unfortunately, my body is not as cooperative as it needs to be. We started implementing more fluids in the hospital by flushing 200 mL of saline 3 times a day through my g-tube. EPIC FAIL as nausea, heaving, and abdominal pain was too much. Then we tried it through the J tube, which was better, but still too problematic. The first flush of the day was manageable, the other 2 were not. After those attempts, we decided to try unflavored pedialyte on a slow drip through my J tube overnight. We set the pump for 20 mL/hr of pedialyte for 10 hours (200 mL total) and during the day continued to run my Peptamen AF formula at a rate of 35 mL/hour. This has been tolerable for the most part, though I have had to adapt the times a little and still have to figure out how to convince my body to accept more formula and fluids as I'm currently only receiving a max of 500 - 600 calories a day and much less than 1.5 Liters of fluids, which is the ideal and recommended amount. 

What does this mean? Basically, I am staying dehydrated around the clock, but thankfully not enough to require a hospital visit. I feel lightheaded, weak, nauseated, crampy, everyday and am having issues with headaches/migraines, dizzy spells, breathlessness at times, and tachycardia episodes. Regardless of how I feel, I'm having to make myself feel worse by pushing the level I can tolerate so I don't become too dehydrated or malnourished. My medical team and I have to keep a watchful eye on how my body is tolerating the decrease and lack of fluid volume. On a positive note, my body can at least remain free from another central line infection for the time being. 

Gastroparesis is a chronic invisible illness that impacts every aspect of our lives.

We may appear "fine" on the outside, but what we deal with every day on the inside is NOT.

Gastroparesis doesn't discriminate by age or size. Some will lose a lot of weight, some actually gain.

A change in one's food diet may help improve symptoms for some, some are able to get by on liquid and/or pureed diets, and others require tubes and lines to receive their hydration and nutrition.

We struggle to find better treatments and improvements in our quality of lives.
We advocate for change, because we don't want others to have to endure what we have.

We form online friendships that become very dear to us.  Our connections help us support one another during most challenging times, celebrate achievements, and unite to make a difference. 

We are saddened with each green candle as we miss the ones that pass away, fear the loss of additional friends in the near future, and worry about our own path as we experience similar health stories of those we lose. Advocacy helps keep their memories and spirit alive in our hearts.

Special thank you to Melissa Adams Vanhouten, Shanna Harjo, Corina Castillo, and all of the Gastoparesis: Fighting for Change Advocates that helped with creating and sharing these and many more collages, ​memes, and personal stories for awareness this past month as well as other times throughout the year. ​

I saw this on Twitter today.  It touched me and made me reflect on how chronic illness can impact the ways that we see and think about ourselves. 

Most of us know what it’s like to feel broken or question your worth. Having a chronic illness, whether it’s invisible or not also can have that effect. Constantly in pain, fatigued, nauseated, and so much more can bring those flaws right before your eyes and keep them there. It is not our fault, we are not responsible for the illness, but it takes so much away from us and can make us question everything!! I know it has me time and time again.

Do I have worth? Absolutely & so do you!
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But believing that and feeling that when the smallest action takes so much out of you, when treatment plans just don’t work the way you (and others) hoped they would, when careers are lost, when vacations and family events are missed that you really wanted to attend, when no one understands how much you hurt or how rotten you feel, when you think you HAVE to hide how you feel day in and day out because you can’t stand to see your loved ones worry or hurt, when you feel so awful that you have no chance of hiding it but also don’t have the words to describe, when you look down to all of the medical scars and machines doing what your body no longer can, can make it feel nearly impossible.
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Regardless - you are special, unique, loved, and important. You still deserve to be loved, broken pieces and all, just as you are. Not only by others, but even more importantly loved by you. Allow yourself to be loved just as you are. (And yes, I’m keenly aware it’s much easier said than done.)

It's difficult to communicate to others, including to our families and ourselves, that there is no fix or cure for this awful disease, at least not yet. Depending on your individual cause, improvement may be found when the reason (other illness) is effectively managed. For the rest of us, at the moment anyway, it is all symptom treatment and management. Medicines to treat, or minimize, some symptoms that can in return create horrible side effects. Medicines to treat the side effects that were created by the medicines we were taking in hopes of alleviating symptoms. Surgery interventions that make us face a risk of making our illness worse in the off chance that it may possibly help use improve. I admit, I get frustrated with myself and others at times because I'm doing everything that I'm supposed to do, yet still sick. I know that too many of you can relate.

Everyday, I deal with troublesome symptoms. I used to be an active mother and teacher, a career I absolutely loved, but unfortunately had to eventually resign from due to my health. The evening of February 16, 2013 I went to bed as a "normal" 35 year old and woke up the following morning to an unexpected life of chronic illness. One where food was no longer a pleasure, but instead a nightmare of pain, nausea, and vomiting. I spent months unable to eat anything at all, in and out of ERs and doctor offices dehydrated, in pain, and in need for someone to listen to and actually willing to help me. However, I was unable to find any answers or relief with the exception of IV fluids, usually accompanied with blame for allowing myself to become dehydrated. According to them, I just needed to drink more water, what they didn't understand was I couldn't take in anything without drastic debilitating symptoms. It took numerous different doctors and two hospitals before I FINALLY found someone that understood the reality and severity of my health issues, took my condition seriously, and admitted me for the first of many hospitalizations. Even today, I still fear meeting new doctors as a result of some of the negative, degrading, and hopeless experiences I have been through. Thankfully, through determination and God's grace, I currently have an awesome medical team of doctors that authentically care about me, my quality of life, and that I can actually feel comfortable with trusting. 

At this time, the majority of my nutrition literally enters my small intestines through my GJ feeding tube I've had since 2013 and then exits my small intestines through the ileostomy that I've had since 2016, when I had my colon removed due to colonic inertia. Due to chronic dehydration, I have had a few PICC lines and PORTS. Both are types of central lines that are threaded through a vein to the entrance of the heart, but differ in the location they are placed and how they are accessed. I, personally, have a PICC right now to infuse Lactated Ringers at home throughout the week and for a couple of iron infusions when I am anemic. (Other people may use central lines for things such as saline hydration, TPN, antibiotics, and/or chemo.)

Having central lines can most definitely be beneficial but also come at a great risk for central line blood infections and sepsis. I have been hospitalized numerous times for infections that required removal of my line, broad course antibiotics while inpatient at hospital for at least a week, sometimes longer, and then having a new line placed. I have had friends, likely you have as well, that died as a result of central line bloodstream infections. It is a scary risk, but necessary for some in order to have any kind of quality of life. 

Daily I deal with pain, nausea, and fatigue. The majority of all of my health problems can be labeled as chronic GI motility disorders, (recently being rebranded as Disorders of Gut-Brain Interaction by Dr Drossman and the Rome Foundation). The Research Enhancement Act is a bi-partisan bill that we are currently trying to have co-sponsored and passed in the House of Representatives. It is also known as H.R. 3396. If passed, it can help increase research and awareness for GI motility disorders including but not limited to gastroparesis, colonic inertia, GERD, achalasia, and pseudo-obstruction. Even if our problems are not cured in the immediate future, better awareness, more effective treatment options, and improved understandings of the causes and impact of these illnesses on our lives and our family's lives can. Our successful #DCgreen2019 Gastroparesis March on Washington patient rally, our Facebook live Virtual March on Washington event, and our attendance and participation in legislature meetings with IFFGD (International Foundation for GI Motility Disorders) at their Hill Day event show that together we can, and will, make our voices heard to make a difference. 

In closing, I want to encourage each of you to never give up. Keep advocating for yourself and/or your loved ones. Find a doctor that is right for you. If you're not getting answers or aren't satisfied with the care that you are receiving, keep searching. You know your body best. When plagued with chronic illness we learn very quickly how important it is to actually create a medical team, one that knows and understands us and wants to work WITH us on devising the most effective plan for our personal best quality of life. Communication, empathy, and compassionate care are all beneficial along with medical knowledge.

Learn from your experiences, allow them to make you stronger. Remember you are NEVER alone. You will have difficult days, we all do. You may have days that you feel like giving up, I know I have. And that's okay! If you need to take it one day, one hour, or heck even one minute at a time - do so. B-R-E-A-T-H-E. Reach out for a supportive hand or a sympathetic ear when needed. Nothing is wrong with that. There's a whole community of people that care for you and are here for you, whether it's family and friends nearby, ones you connect with online, or both. I promise you are not alone. On more tolerable days, if possible, offer helping hands or ears to others. It doesn't matter if it's in person, by mail, over the internet, or by phone. Small actions can make a positive difference in someone else's day or even life, just like they can for you. Find a way to have your voice heard. Whether it's by social media, writing, talking, attending conferences or events, contacting your legislators, or something else - you have a purpose and you have a message that can make a difference. You may even discover that sharing your experiences helps you feel better mentally and emotionally. To me it helps bring the feeling of purpose and meaning to my life. 

I know that I posts more online, whether blogs or other social media platforms, about my illness than many would like read or hear about. I try to post positive comments & pictures, usually family related, as well. The negative ones are not because I want pity or attention, it’s simply because though I am not my illness, my illness is a huge part of my life. How can it not be?? It’s because social media & blogging are an outlet for me, especially since I don’t get out much anymore. Being a private person, I usually don’t share anything at all on my worst days, I don’t go into detail about all of my continuous symptoms or struggles, but at times I do need to get things off of my mind.

Advocating, which I know some are tired of as well, is a POSITIVE act. Since having to resign from teaching due to my health, which is still difficult & painful for me to think about, I struggle with purpose and meaning to my life outside of parenting. Advocating gives me a sense of helping & making a difference, even if it’s small scale. Smiles and laughs caught on camera are positive glimpses, sometimes internal happiness, but not the entire picture.

For example: I spent 2 days with friends across the US in DC last week - both inside. Only 1 of those days (day with legislators) required me to be on my feet for extended amounts of time as we walked between offices. Lots of pictures with smiles, because it WAS a special and monumental time. But, physically it was more demanding than I would let myself believe. Nights were sleepless due to pain & over-exhaustion.

I’ve been home for 1 week and still have not returned to my “baseline”. Up until Monday, my kids were trying to convince me to go to ER or at least see one of my Drs because they were worried about me. I was worried as well, but didn’t have energy or strength to go anywhere & knew that there was nothing that could be done to help. I already have IV fluids regularly at home along with tube feeds & medications. My body just needed lots of patience and rest, still does.

The way my body reacts to what used to be a “simple” day is not caught on camera, is not usually shared, yet is my reality & is extremely frustrating. Keeping my reality bottled up all the time is destructive to mental health. I try to portray positivity, but at times break down and share the negativity of gastroparesis & chronic illness, because if I didn’t I would not remain in a safe state of mind. You don’t have to understand, only those that live with chronic illnesses truly can, but please be respectful & mindful of the need to express negativity at times. I used to try and teach myself to “force positivity” all the time, but found myself sinking deeper in despair. Being “fake” or “wearing a masks” , which I still catch myself doing to prevent others from seeing my pain & how bad I feel, is often much more draining & isolating in the long run and can lead to a more dangerous path for oneself.
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Therefore, I apologize if my posts get on your nerves, are negative or sometimes even depressing, but I do not apologize for being real, being human, and looking after me.

On June 24, 2019 gastroparesis patients from across the country came together as a united front to spread awareness and make our need of more research and better medical treatments known. This was not an easy trip by any means for me, but I felt that it was a meaningful and worthwhile trip for not only myself personally, but for so many in the gastroparesis and GI motility disorder communities. 

I am extremely fortunate to have had support and encouragement from my family, online friends, and even my therapist to remind me that it may be a risky and difficult journey physically, due to my health, but also had the possibility to be a unique, purposeful, and special opportunity to me mentally and emotionally. So with fears in the back of my mind, curiosity and the desire to meet others in my online support group, the focus of possibly making a difference, and the determination to follow through on my responsibilities as a patient advocate and friend, I traveled to Washington, DC with my father and teenage kids. Not only did we go to DC to attend the #DCgreen2019 patient-created Gastroparesis Rally on June 24, but also for me to attend IFFGD's (International Foundation for GI Disorders) "Hill Day" event which included a short conference and a day of appointments with US Senate and House of Representative offices.

I spent the morning of June 24th with a few friends that have similar health issues as me, as well as with other digestive motility disorder advocates. Some of these other advocates were parents, medical professionals and IFFGD staff members and volunteers. The speakers during this morning conference were very interesting and informative as they shared with us the reason for advocating, important medical related information about doctor-patient communication, and how patients can be more proactive in raising awareness and pushing for legislative bills that can improve patient healthcare and treatments. Some of the speakers that we listened to were Ceciel Rooker (IFFGD president), Dr Baha Moshiree (GI motility specialist), Hayley McCorckle (IFFGD's public relations), Dr Frank Hamilton (chief of Digestive Disease programs branch in Division of Digestive Diseases and Nutrition at NIDDK), Peter Herzog (Washington representative for IFFGD), Dale Dirks (Washington representative for IFFGD, and Susan Chittooran (Patient Engagement Project Manager of FDA).

At lunch, those of us in the Gastroparesis Support Group who were attending the rally, left to go to our rally location. Originally planned to take place on the Capitol Grounds at Union Square, the rally was moved to an indoor venue, Ivy City Smokehouse, due to the threat of severe thunderstorms. 

The energy level increased as everyone began arriving at the venue. Hugs of joy, physically meeting friends met online, and making new friends that actually understand and share the desire to inspire positive change for our community led to a comfortable, exciting, and personal atmosphere. Often feeling out of place, like a "freak" due to health issues or awkward because of health accessories needed such as feeding tubes, ileostomies, central lines, etc  - many found this environment allowing each of us to feel "normal" as we were not alone and could truly understand and empathize with each other. As great as uniting and visiting with each other was, the afternoon would consists of even more encouragement and motivation. 

Melissa Adams Vanhouten, an amazing friend and advocate welcomed everyone to the rally and shared a moving, inspiring, and focused speech, which is linked below. Dr Michael Cline of the Cleveland Clinic spoke next, sharing important and beneficial facts about gastroparesis, treatment options at the present time, diagnostic tests that he finds most helpful and that should be done by all patients to check the motility of the entire digestive tract as well as autoimmune testing was suggested. He was kind enough to stay and answer questions from our patient community. His informative speech is also linked below. We also heard from a fellow gastroparesis advocate, Debbie, as she read letters of support and encouragement that the Rome Foundation and Dr Pascricha from Johns Hopkins sent to our patient community for this occasion. A dedicated, loving, and grieving father, James shared his daughter Nicole's personal story. He shared beautiful memories of her, the heartbreak of her illness, her love for life and her desire to make a difference and help others even during her own struggles, as well as his determination to keep her dream and memory alive by advocating for the gastroparesis community. A beautiful memorial service was then led by a fellow gastroparesis patient, Kristine. The rally ended with numerous brave patients sharing their stories. They included a child, a young adult with active sepsis, support group members that overcame obstacles to make it to DC, and a daughter expressing concern for her mother while also explaining that they are fighting so hard to advocate not only for her but even more so for the young children that are having to live and deal with this debilitating illness.

Two of the speeches can be heard here by clicking on the speakers name:
Melissa Adams Vanhouten 
Dr Michael Cline

Many gastroparesis members attended the #IFFGDHillDay event the following day, June 25th, alongside IFFGD (International Foundation for GI Disorders) staff members and other GI motility disorder advocates. We were divided into small groups based on our state prior to our arrival at our scheduled appointments with US Senators and House Representatives (or their staff). My North Carolina group had a busy and meaningful day meeting and talking with the offices of Senator Burr, Senator Tillis, Representative Butterfield, Representative Price, and Representative Walker. We were supposed to also meet with Representative Foxx, but due to unforeseen circumstances in the schedule, we just left a packet of information with her staff. During each of the meetings, we discussed the house bill 3396, also known as the Functional Gastrointestinal Motility Disorder Research Enhancement Act of 2019, that we hope will be supported and passed, as well as why it is important to our health community. We personally shared a portion of how GI Motility disorders has impacted our lives. (Unexpectedly, tears escaped when I was sharing my personal story with them, especially when I spoke of how it affected my kids and my career.) Other discussion points, besides HR 3396, were our pleas for them to increase NIH (National Institute of Health) funding, increased Department of Defense Gulf War Illness funding, and a FGIMD program for the CDC (Center of Disease Control). 

By far, regardless of how purposeful, meaningful, and powerful these two days were, it did not come easily. It took a lot of energy that many of us struggle for daily. As people living with chronic illness, attending these two important events required us to put our health at risks. Many of us chose to power through debilitating symptoms and add additional physical stress to our already worn bodies, all with the hope that our sacrifices would be worthwhile and make a difference, if not for us, for the gastroparesis and GI motility disorder community as a whole. 

In conclusion, we left feeling a sense of pride, encouraged by new connections and deeper friendships, and inspired to continue forward with our advocacy efforts. Feeling a sense of accomplishment, we are now in the process of determining what our next courses of action will be.

#DCgreen2019  #IFFGDHillDay

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When chronic illness first appeared in my life, I went through a period of grief. Not only were awful debilitating symptoms and uncertainties plaguing me, but guilt overcame me as I began to feel like a burden and failure to my family. Life had changed. The activities that I once enjoyed, looked forward to, and partook in drastically changed. I was constantly feeling like I was a disappointment for not being present or able to do the things I loved, having to cancel out of events, or staying at home while they actively lived their life. 

As time moved on, my illness and symptoms continued, but my family and I were able to reassess and redefine what qualified as important quality time together. Sure, I still feel sad about and miss the me that I used to be and regret some of the activities that I miss, but there are other activities that are more conducive to my health and more accepting of my limitations. (Yes, I still take chances at times, pushing my luck, and testing my boundaries, but have learned to better listen to my body's needs so consequences are more manageable and less harsh.)

So what are some of the treasured times with my family, especially my children?

We enjoy watching Netflix series together, sometimes binge watching style, watching sporting events on television, and are at-home (and occasional theater) movie buffs.

My kids (17 &15) and I also enjoy going out for afternoon one-on-one drives. We have enjoyed going out driving on occasion, with the sole purpose of trying to get me lost, and then together figuring out how to return home. GPS on the cell phone has admittedly come in handy a few times. These times are limited, but treasured. In order to take a drive, I have to be having a low nausea, low pain day with a decent night's rest the night before. There have been times when the planned drive had to be canceled or ended early. Besides a few unexpected "events" like my feeding tube becoming disconnected or most recently my ileostomy springing a leak, these outings have been pleasurable. Must admit I am blessed with how understanding my kids are.

Over the past few years, my kids and I have also returned to playing games together. Some of our favorites include CLUE, CRAZY 8, UNO, JENGA, ZOMBIE-OPOLY, SORRY, and video games such as NASCAR. We also have meaningful as well as silly conversations. 

Vacations are sparse and much less active, requiring mostly just relaxation at the hotel or cabin for me. If they are going somewhere more physically exhausting, I will either remain at home or if nearby, hang out at the hotel. 


I would love to hear ways that others living with chronic illness enjoy life with their loved ones?

​On June 24th and 25th, 2019 a #DCGreen2019 rally will be held to bring awareness and knowledge about #Gastroparesis and #FunctionalGImotilityDisorders to Washington, DC. This will be held in conjunction with IFFGD (International Foundation for Functional Gastrointestinal Disorders).

For those that are unable to physically participate in person, a virtual march will be held as well. Everyone will be able to participate, whether in person or from the comfort of your home. 

Thank you to all involved in the planning phases! If you'd like to join in the planning please feel free to join us at https://www.facebook.com/groups/GPMarch/?fref=mentions&__tn__=KH-R! More specific details will be available at a future date. 

The tentative schedule in my friend Melissa Adams VanHouten's words:
"Monday will consist of an IFFGD-sponsored speaking event focused on Gastroparesis-related presentations in the morning (at a central hotel conference site) and our Gastroparesis rally (at the Capitol, within walking distance of the conference site) in the afternoon.

Tuesday will be the day we meet with legislators. We will meet briefly with the IFFGD in the morning to cover tips on engaging and conducting a successful office visit and then break up into small groups and head back to the Capitol for meetings with our individual representatives. At the end of our sessions, we will meet back at the conference site for assessment and some closing remarks.
Please keep in mind the itinerary is tentative, but the dates are now concrete. You are welcome to attend any or all of these events. Additional details to follow!

Let's go create some change!"
​

I know that I have not written quite as often over the past few months, or to be honest, last year as a whole. It's not that I didn't want to, in fact I really felt the need to share and process the mental anguish that I have been dealing with as a result of my physical illness, medicine side effects, trust issues, and complete exhaustion. I just have not been able to find the right words to accurately express my thoughts and experiences.

During 2018, I tried to persevere through my low moods, discouraging seemingly unbearable days, fears, and sadness for the sake of my children and family. I tried hard to focus my attention on the "more tolerable" days and the creation of positive memories on those days, to help me survive the unfavorable and undesirable days. I attempted to be present with my kids and family as much as I could, accept and respect my body's limitations, and pursue the highest quality of life that I could, regardless of the side effects I would face later. (And yes, they have been and continue to be brutal and last for days.) But what is the point of being alive if I don't allow myself the opportunity to live and experience moments with my family?

During 2018, I lost touch with an important part of me. I spent months feeling numb and lost, but during the foggy moments I still tried to remain true to my goals and intentions. Yes, it was incredibly hard and at times I wanted to quit, wanted to give up, wanted to disappear - but the love from God and my family, as well as some a few close confidants, didn't allow me to drown. They remained by my side and gave me the encouragement to hang on just one more day, to strive for the beautiful moments in life, and to relive the meaningful and special memories in my mind when days seemed too dark or painful to continue. 

The final month of 2018 ended up being a realistic summary for my entire year. Health issues. Mental worries. Emotional lows. Physical and emotional exhaustion. The feeling of living in a daze. Injuries, from falls, that I was determined to handle on my own. Ignoring medical needs momentarily as I tried to "figure it out" or "allow it to fix itself" on my own. Challenging and taking risks outside my comfort zone, in search of treasured memories with loved ones. And days of consequences that made me rethink and appreciate the meaning behind each of my chosen actions. 

I ended 2018 with my kids, husband, and dad at a football game. My youngest kids are high school students, avid sports fans, and have attended numerous ball games with their father and grandfather. However, I decided to attend this game with them. It was the very first time that I have ever been with them to a football game. Was it easy? Definitely not! I was beyond exhausted. I was nauseated. My body ached all over. My heating pad was necessary at the hotel. I humbled myself and agreed to riding in a wheelchair from the parking lot to our seats. With the exception of the game we remained and rested at the hotel. (Which admittedly was more than worthwhile, because it helped me reserve that much needed energy to sit at the game and bring in 2019 with them by my side!) Due to my feeding tube splitting and leaking, I had to go a few days without running my tube feeds - which added additional strain to my body. My IV fluids were infused in the hotel room and during the car ride. My body definitely hated me, my mind questioned and partially criticized me, while my mind, spirit, and heart were full of love and pride! My life is not ideal, that is for sure, but miracles still surround me, and for that I am most grateful. 

2018 has had its ups and downs, achievements & letdowns, laugh & tears. Every year will. Emotionally & physically I have been challenged, but through it all God & family have remained steady. My goal for 2018, will continue throughout 2019; Striving through difficult days with the memories created during the more tolerable ones. One thing I’ve learned through my experiences, through saying goodbye to friends & loved ones that have rejoined Christ in Heaven, is that life is too short and treasured memories are too important to waste. (Even if I have to deal with terrible physical consequences afterwards.) Our online GP support group said goodbye to 50 young souls in just 2018 alone, 50, and that does not include any of our friends that passed on prior to 2018. I'm sure that there are probably others that we are not aware of.  A friend I was close to in high school and another school classmate ended their lives at the age of 39 and 40 a few months ago. Family members and family friends have passed away this year, some of which were unexpectedly, due to illness and/or accidents. No one is promised tomorrow. 

Happy New Year everyone! I'm sure that we all will have hard and difficult days during 2019, but may we also be blessed with so many more enjoyable ones to share with our loved ones and friends.

I have learned that vulnerability scares me and chronic illness has added to the fears. Throughout my life, I have built walls and reinforced them more and more as the years have passed by. I avoid letting others get too close in an attempt to protect myself physically, emotionally, and mentally. I do not like to let other people know the most protected aspects of my inner self and personality. Being vulnerable, in my experience, often provides others with too much power that in turn ends up harming me in some form or fashion.

Vulnerability as a patient, literally scares the hell out of me, especially with doctors that have not earned any of my trust. Vulnerability requires transparency, reaching out from my comfort zone, and taking risks that I will be dismissed, doubted, questioned, or mocked from the very doctors (or nurses) that I am trying to receive help from. Past medical experiences that I've endured have led me to retreat further and further, and created new apprehensions, memories, and fears. 

I've been dismissed, ignored, told it's all in my head, etc various times since being a teenager. Those same doctors, the ones that were supposed to be treating me and helping me get better, instead told me that there was nothing else they could do to help me. I believed them, because what they said was supposed to be right. They had the medical degree, not me, so I tried to convince myself to work through the symptoms, stop complaining, and to stop being a wimp.

And you know what? After months of dealing with the same issues with no improvement and often worsening symptoms, I finally ended up seeing different doctors which eventually led to answers and relief. In some cases, I had to deal with the ignorance in emergency and/or hospital rooms until a new doctor was assigned to me or my vitals went haywire. Each of these times, I had known that my body was not right - but was simply not listened to or not believed - and taught to doubt myself and my reasoning when I had been right all along.

I get it, we can't expect to be "cured" or "healed" when we don't know what the issue is, but making patients feel like they are making it up or not experiencing what they most definitely feel within their body, is more damaging and sometimes downright dangerous. In some cases even life threatening. If a doctor doesn't "see" the problem, if the test(s) aren't discovering the definite problem, the least one can do is reinforce with the patient that you believe them and are going to continue trying to help them find a solution that will help them feel better. It may take a while, it may take patience, it may take monitoring or trial and error symptom management, and that's okay.

It appears at times that Doctor's will suggest a possible issue, may (or may not) conduct a test or two to rule out a possible diagnosis, may try a medication, but then if you don't improve, it comes back as being the patient's fault. The patient is blamed for how they are feeling or blamed for not getting better yet. Many doctors can't seem to accept that they may be full of knowledge, but they still don't know everything. Some (thankfully not all) doctors carry too much pride or arrogance to admit that they don't have the answer or the cure.

As a patient, most of us gain respect from a doctor that admits this and follows by saying that they will not give up on helping us find improvements, even if symptom management is all that we can do. And trust me, there are some rather awesome doctors around! I can admit that. 

A little suggestion from a patient, please don't tell patients that they are not feeling what they feel, or that it isn't real, and then send them away or drop them as patients. This doesn't help! Patients remember and internalize the way they are treated and begin to resist and doubt the intentions of doctors in the future. They begin to lose hope, withdraw, and at times give up on not only the medical field, but on themselves. When we begin to feel as if no one or nothing can help us, that we are at fault for being sick and feeling as awful as we do, we lose our perspective. Many of us carry around the weight of being (or feeling like) a burden to our families, losing the careers that we worked so hard for and even loved, watching our family worry too much, or even begin to feel worthless. Who wants to live like that? We are all different, how we think and process things may be different as well, but at some point the resiliency and desire to keep trying so hard diminishes. 

We are expected to trust our doctors, sometimes more than we trust ourselves. We are expected to expose our vulnerability. But how? 

According to urbandictionary.com, the definition of Vulnerable is
"Someone who is completely and rawly open, unguarded with their heart, mind, and soul. Being vulnerable happens when you trust completely. Rather its vulnerability by pain or joy, it's being exposed with all of the emotions that make it easy for someone (someone you trust) to really do some emotional damage or healing.. Vulnerability is the surrender of all control and personal power in regards to letting someone close enough to destroy you!" 

Vulnerability as a patient is most definitely daunting. and intimidating. Placing your self care in someone that you are expected to trust, when so many other medical encounters have proven otherwise, is a difficult challenge. The frustration of some doctors minimizing pain and sickness, condemning you for not "getting better" or allowing your disease to interfere with your life, condemning or blaming secondary gain if you try to hang on to blessings or portray optimism - is a no win situation. Unfortunately, some doctors create more harm than good. 

Don't get me wrong - there are magnificent doctors around as well. They are able to "see" and "understand" their patients, are beneficial, and truly make a difference in healing or improving their patients' health, and in return life.  

The thing is, when a someone is already struggling and falling apart from illness and it's impact on daily life, a doctor has the power to throw the life line to help or the anchor to make one drown faster. Sometimes the tide that moves us, is set in motion by the personality of doctor that treats us. Literally, our lives can depend on the luck of the draw or flip of the coin. 

For example, 
I spent months dealing with severe off and on lower back abdominal pain and nausea as a young 32-33 year old adult. I had extreme pain spells that would take my breath away and bring me down to my knees. My primary continued to tell me that if I lost weight it would help. According to him, my pain was a result of my eating habits and lack of exercise. I was told to take tylenol. There was nothing else he could do. Labs were fine. Could be a pulled muscle. Probably just stress. Etc.... (Chronic Patients know the routine.) I was made to feel like a fool. But once again, doctors are "supposed" to know best. So I continued teaching through the sporadic pain spells. Tried to ignore them. My young kids (a first and third grader at the time) massaged and walked on my back to help relax the muscles. Labor Day weekend 2011 my symptoms became too extreme to stand or sit. I couldn't stop throwing up and heaving. I could no longer ignore my body's messages. I could no longer convince myself that the doctor was right and that nothing, besides my weight, was wrong with me. Hours later, I gave up and drove myself in the middle of the night to the local ER. (I have no idea how I made it there in the condition I had allowed myself to get in.) Treatment in the local ER was inadequate as well. My pain level was off the charts. I couldn't stop vomiting. I couldn't find a comfortable position. The pain was making me extremely restless, dizzy, and weak. They discovered that I had a 9 mm kidney stone. We were told that I would be sent home with medicine and would just have to wait it out. While there my body was literally shivering out of control. My teeth chattering so hard that I was unable to get them to stop or even slow down. I was FREEZING internally. But I had no fever, so the nurse berated me, telling me that it was "JUST a kidney stone - stop being a baby." My husband left to go pick up the medication while they went through the discharge procedures. My mom was concerned and kept telling them that they could not send me home like this. Apparently, my coloring did not look good to her. Something was definitely not right. They ignored her. I was in too much pain to talk. They took my vitals one more time before discharge to find that my blood pressure had dropped to 60/30. I went from being rushed to discharge to raced upstairs to the ICU, had emergency surgery, and upon being placed in a recovery room, my blood pressure crashed again so I was rushed back to the ICU. A day or two later, after I stabilized, I spent nearly a week hospitalized in a regular room. My mom told me that it was like I was in a coma (though wasn't). I didn't talk, move, or open my eyes for days. The "just a kidney stone" that I was such a "baby" about was actually impacted and had caused a major kidney and bladder infection. My body was going into septic shock and my family was told that my kidneys had been in the process of shutting down. My doctors later told my family and I that I would likely have died if I had been discharged from the ER. I was fortunate. During the madness, someone did step up, listen, and take care of my needs.

I have other memories validating the fact of medical professionals doubting and dismissing my health concerns, only to later find out that I did indeed have something going on that could be corrected, contrary to their belief that "everything was fine."

From gallbladder stones, to severe constipation and impactions as a result of colonic inertia, pain and problems from pelvic floor dyssynergia, esophageal spasms from hypertensive lower sphincter, and central line infections (including bacteremia for at least 2 weeks while searching for answers and help while extremely sick), my experiences have varied over the past few years. Doctors have proven to me that vulnerability is a risk that I may NEED to take, but still fear greatly, because of previous medical experiences. Stating that, I must give credit to the doctors (and nurses) that did listen and help me in the midst of the negative experiences. Additionally, I must remember that, like us - doctors are human. Like us - doctors  choose how to react and will make mistakes sometimes. Like us - doctors have good and bad days. Which unfortunately doesn't make being vulnerable any easier.

I have had and currently have some wonderful and greatly appreciated doctors. Even though I may trust them, how much I actually open up or let them know depends, as I find it pointless to keep repeating the same issues/symptoms over and over when I know that there is no simple fix. But knowing that there are knowledgeable and compassionate doctors that are willing and wanting to help is most definitely reassuring.

So as one can see, vulnerability as a chronic illness patient can be very challenging and frightening. Our lives are put in the hands of others, we have to be transparent in order to have a chance of some relief and healing, while knowing in the back of our mind that we are placing ourselves at risk for additional harm as well as lack of understanding or relief. This is just a portion of the reason that vulnerability fears invade me in regards to healthcare.

Unfortunately, not everyone has been encouraging, understanding, or supportive. There are people, some that know nothing about me, and some that were responsible for helping me, that bring me down with their irresponsible judgements. Admittedly, I too, have passed harsh judgement on myself. Most of the time I can forget and forgive those that pass judgement because I know that they don't know what life behind my front door looks like; but the hurt of being judged still appears and is still unnecessary. Even more so, the heartache of people in the chronic illness community, being denied help or dismissed from medical doctors or nurses that lack compassion or willingness to truly listen is inexcusable; Which brings me to the other song I found today by Stine Bramsen, "Don't Judge Me." 

Cruelty and judgments, even when deceivingly done behind my back, hit hard. Not only does it devalue or minimize the impact of my illness, but it also sends me down a misguided path of shock and despair. Just because one does not have the capability of feeling my pain, feeling my nausea, living the negative consequences of my illness, or witnessing the decisions and choices that I make (disregarding the costs that I will have to accept later in exchange), does not give them the right to judge. Trust me, I would have no reason to pretend or exaggerate. There are no gains that would make it worthwhile. Why would I choose a life of torture? I can't undo the painful truth of how horrible my body feels, I can't undo the honest truth about how much pain food causes, I can't undo how much fatigue I experience, I can't undo the amount of nausea and lack of sleep that I endure. I can't undo the reality of my health. I can't undo the harm that some judgments have on my spirit.

As Stine's beautiful and powerful lyrics say,
"I can't undo the painful truth, I can't undo, God knows I wish I could.
Don't judge me, cause I can't have, I can't have your blame on me,
cause you were not there, you were not there;
so don't judge me, I can't take it anymore."

Sometimes, I "need to hide my pain away" to try to reclaim and live life. It doesn't mean that I am not hurting. Sometimes, when smiles and laughs are seen by you, inside I feel like I'm crumbling apart or that my insides are about to explode at any moment from pain, or feel like I will soon begin heaving by the aromas around me or intense nausea, but I choose to hide it in order to help those I love enjoy moments with me. I sometimes hide my miserable symptoms to strive for something meaningful and cherished in my life.  I choose to hide my symptoms, to protect others from worrying about me, or in attempt to protect my own mentality and spirit, if only for a few moments. So unless you live with this illness, you will never know how life-changing and terrible this illness can be on one's life.

"You'll never know how I hurt inside. You'll never know how I've cried and cried and cried."
Unless you live with the daily pain and consequences of chronic illness, don't judge me or others.
"I don't deserve you hate on me." Neither do they.

Trust me, those closest to me, know that "I am hard enough on me" already. I already downplay and minimize the symptoms I experience more than I should. I judge myself harshly by what I can't accomplish but desire so much to do. I judge myself for what I miss out of in life (especially when it comes to my kids), for what I have had to give up (like my career). I judge myself critically for why I am not better yet. I judge myself unkindly for judging myself on things that are outside of my realm, outside of my control. So please don't judge me, I can't take your judgement or blame anymore.

I do NOT write for sympathy. I do NOT seek sympathy from anyone.

I do NOT write for attention. I do NOT seek attention from anyone.

I simply write to record and process my personal experiences
and post in the off chance that they may help someone else.

I simply strive to discover a better quality of life;
to figure out a way to help my body feel better while living with illness.

If you do not understand and accept that,
then step out of my way, taking your false accusations and judgements.

​The morning was fairly normal, 
when compared to my normal at least.
My fatigue and nausea, more pronounced,
but in my experience they are always a beast.

I rode with my son on an errand
looking for where at his school he's to park.
Not knowing what lay just ahead
was my body preparing to spark.

I infused my regular lactated ringers
using my PICC line, like every other day.
Fueling my body with needed fluids
to keep my dehydration at bay.

But hiding beneath my skin
were embers that were no longer dormant.
Out of nowhere chills overcame me
with pain in my legs a boiling torment.

The internal blaze combusted
My body radiating such heat.
Intense freezing yet also burning
Fever scorching over 103

Unable to sit still or even to walk
I was in such tormentuous misery.
An infection was clearly simmering,
uncontrolled wildfire burning within me.

I tried denial and avoidance
For at home is where I wanted to stay.
I didn't want another line infection
My mind unsuccessfully tried to will it away.

But, my family saw through my anguish
urged me to get promptly checked out.
Sluggishly I made my way
for another hospitalization, no doubt.

Real Life Diaries: Living with Gastroparesis by Lynda Cheldelin Fell and Melissa Adams Vanhouten, includes personal heartfelt and thoughtful responses to inquisitive questions that other gastroparesis patients, as well as patients with chronic GI illnesses, family members, friends, or even medical professionals may have regarding life with Gastroparesisis and/or other chronic digestive disorders. 

The narratives provide readers with an inside view of the impact that chronic illness can have on one's physical, mental, and emotional health as well as their day to day lifestyle and the connections with those around them. Each of the stories are different, unique, and individualized while also sharing insight that others can appreciate and relate to. This book is not intended to diagnose or treat conditions, but rather an opportunity to learn more about some of the various symptoms, treatments, and knowledge that we've learned from our health experiences. The intention of the book is to make others more aware of their condition(s), recognition that they are NOT alone, and share ideas about treatments or procedures that one may choose to discuss with their personal medical team. 

If you are expecting to read a cure all, happy feel good, happy ending book - this is not the book for you. Instead, this is a realistic look into what patients feel, see, think, hear, fear, and even hope while learning how to live and cope with being chronically ill. Not only will you discover the impact that being sick may have on the patients' personal lives, but in some cases, how it impacts their social and family circle as well.

In addition to this book, I have also found the following books to be enlightening, educational, thought-provoking, encouraging, and/or helpful along my health journey. I will add to this list as I read and discover new books that I find to be beneficial.
(Clicking on the title will take you to the book's amazon page.)

Gastroparesis Healing Diet by Tammy Chang
Info regarding healthy eating and recipe advice from nutritionlist and patients.

Changes that Heal (Book & Workbook) by Dr. Henry Cloud
Book and workbook for deeper understanding in developing and healing yourself emotionally.

A Blessing In Disguise by Kristen Fox and Mel Kenaston
Blessings in Hidden Places by Kristen Fox and Mel Kenaston 
Both autobiographical books are from Kristen's personal perspective and experiences. Sadly, she has passed away since publishing her books. Kristen was also an online advocate, writing numerous articles for various sites, one of which was MTV.

After the Diagnosis: from Crisis by JoAnn LeMaistre
Written by a clinical psychologists, the reader is introduced to the six stages of emotional response to chronic illness that they, as a patient, may experience. The reader is walked through the stages of crisis, isolation, anger, reconstruction, intermittent depression, and finally renewal.
​
Gastroparesis: A Roadmap for Your Journey by Chelsey M McIntyre
As a pharmacist and person living with gastroparesis, Chelsey McIntyre shares what she has learned and experienced along her health journey. "Topics covered include foundational material on evaluating information, understanding what is happening to the body, and navigating medications, nutritional supplementation, and alternative therapies." 

Gastroparesis: My Personal Journey by Patricia L Rosati
Autobiographical book about Patricia Rosati's personal experiences with gastroparesis. As a nurse living with gastroparesis, she describes how gastroparesis entered her life and how she managed to accomplish her goals while dealing with symptom management on a daily basis. "From doctors who told me it was all in my head to doctors who took the chance and gave me a new lease on life."  
​​
After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter
Dr. Julian Seifter was awakened to life with chronic illness when he discovered that he had diabetes. His life changed in many ways as he began seeing and experiencing the patient experience. In this book he "teaches you how to contend not only with the physical problems, the social stigma, and the emotional fallout of illness, but also with the medical establishment. Convinced that a deeper understanding of the spiritual, emotional, and physical challenges will bring not only comfort and support but also better care, he emphasizes truths rarely acknowledged in medical writing."

Eight Days by Scott Thompson
This book is not about illness itself, but I found it to be spiritually comforting as you journey with the character through thinking back over his life, prior to death. "Life's short when compared to enternity, but eternity is only worth it because of life."

30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans
Daily devotionals and prayers about life with chronic illness.

​Miracles from Heaven by Christy Beam
This book, also made into a movie, was a true account written about Christy's and her daughter's experience with Chronic Intestinal Pseudo Obstruction and a form of gastroparesis. She describes not only the physical impact that illness had on her daughter, but also the emotional toll that it had on her and family, the dismissive attitudes from medical staff. The mission and advocating she had to do for her child  as a result. But all is not bad, when faith is involved and certain people enter your life.

If you have a book that you have found to be effective with coping and/or understanding life with chronic illness, please post in the comments below. I'm always looking for new thoughtful and helpful books to read.

​Video from my friend Melissa VanHouten, urging the medical community and public to listen, hear, and support the GP communities need for awareness, care, and better treatment options.
​It can be shared from the Youtube link.

"I know my storms are not over, but I also know that my God is faithful. With every storm, there will be a rainbow. What an awesome God we serve! Just when we think we have had all we can stand, the clouds break and the sun shines through. It's as if God is sending us a hug, to encourage, strengthen, and bless us on our journey."
(30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans )

How fitting this quote is! As I was riding down the road, with my kids in the back and my dad driving, I came across these words in the book I was reading. I stopped and reread the quote to myself, taking it all in, before I shared what I had read out loud. 

God is Great! God has so much Love and Grace for each of us, every single day! Life is not perfect for any of us, some roads are trickier and bumpier than others, but we all have obstacles that we will face. I feel like I've been through the ringer physically, emotionally I have been pained, and mentally I have been exhausted. But through all of this, no matter how it feels at the moment, deep down I know that I am not alone! God is with me every single step along the way. I may overly doubt myself and mistrust others, but God is loyal, loving, dependable, and constant. 

The devil tries his damnest to bring me down, to help me cast negative judgements against myself, and attempts to make me feel like I'm running solo down a path of pain, sickness, and heartache. 

But GOD is UNSTOPPABLE. HE pulls me through time and time again. 

The past couple of weeks my fear about an upcoming trip was becoming louder and louder, almost causing me to freeze and cancel. I wasn't expecting to feel "well" for the trip, but became fearful that it was going to be too much on my body. My husband tried to warn me, make me rethink my decision. But I held steadfast. I put my Faith and Trust in God that the trip would be not only memorable, but positively treasured. Physically, I was expecting to have my normal symptoms and illness related restrictions and challenges, but mentally and emotionally, I needed and wanted this trip. 

You see, this was the first vacation that I would be partially sharing with my children, my dad, my brother, his wife, and my adorable little nephews. I, personally, have never been on vacation with my nephews, who are 4 and 6. The weather was perfect with nice breezes and little/no humidity. My family was so accepting and mindful of my personal needs. Early on we saw how easily my body would give out on me as we walked from the parking lot to the museum. But my family didn't let it bother them at all, which kept me feeling comfortable and at ease. My afternoon and evenings were spent at the hotel running fluids and relaxing, while they did other things together - such as swimming or walking around the town. My dad and son even went on a ghost walk together. My kids stayed up late with me to make sure I didn't fall asleep while running my IV fluids since my PICC line wasn't cooperating at all! When I was out with them, I was in a wheelchair/scooter, kept in the shade, or sitting in the AC of the car while they explored some of the sites we stopped at. No pressure, no judgements, and no expectations were placed on my body or me. I was truly able to enjoy and live in the moment, carefree of what anyone other than my family and me thought.

We had fun! My nephew took charge of pushing me in the wheelchair as he enjoyed it so much! Must admit, he made the ride very interesting. The sickness I experienced was typical, the recovery period a little more than expected, but the experience of this vacation was oh so worthwhile! We all enjoyed the vacation and the memories from it will most definitely remain for a lifetime!

I believe that God knew I was in desperate need of some encouragement and motivation, so HE ensured that a comforting "rainbow" was sent to me during the "storm" in the form of a wonderful vacation. My body may take time to refresh, but, emotionally my heart and mind was rewarded.

Look at the outer me, 
really look! 
Do I look fine, to you?
In some ways I am fine,
but not fine as well.

Moving around the house,
tube feeds for nutrition,
IV hydration, 
Couple sips or spoonfuls here or there.
So yes I may be fine,
​But not fine as well.

Do you see what's beneath the cover,
what's in my soul,
the scars upon my body,
physically and deep within?
Yes, I may be fine,
But not fine as well.

Have you experienced my pain, 
my nausea, or constant fatigue?​
Silently trying to avoid outsiders
from seeing my inner struggles.
Yes, I may appear fine,
But not fine as well. 

Have you ever given up, 
not wanting to bother talking to a doctor?
Already knowing there's no relief to be found,
no new way to describe or explain.
Yes, I may act fine,
But, I'm not fine as well.

So when you see me
smiling, laughing, joking, loving
Know that I'm also
crying, struggling, pretending, trying.
As sometimes I may be fine,
​But, also not fine as well. 


​
​

Mystery Evening, hazy and blank.
Hour or more simply forgotten.
Apparently watched TV and conversed with kids,
while snacking on Italian Ice, they thought I was alert.

When all of a sudden, my words and actions were slurred. 
They couldn't understand a thing I was saying,
and noticed when standing that I was weak and unstable.

Kids told me the following morning that they had been worried,
especially when they witnessed me weak, confused, and jittery.
My daughters had called my son in to help, 
scared that I'd fall since I wouldn't stay in chair as instructed.

The following morning
I tried to reflect on the night prior,
How could I be present and semi-normal with my kids,
while having no recollection of the evening at all?

​