Recognize/Focus on "progress" or what's going right each day
Don't let negative setbacks drown or mask progress even if powerful
Celebrate progress of small wins, no matter how trivial to keep momentum
Growth Mindset instead of Fixed Mindset
Example: Instead of "Plan A didn't work" think "At least the alphabet has 26 letters")
POSITIVE ATTITUDE ATTRIBUTES
- Optimistic about the future
- Helping attitude
- Proud of accomplishments
- Positive body language
- Can DO mentality
- Reflecting Self confidence
- Calm and positive reaction to criticisms
- Converting challenges to opportunities
To the outward eye, those who are not around me daily may think that I choose to avoid certain activities because I am depressed. I honestly do not feel like that is the case, at least not all of the time. There may be moments or days that are depressing, but I do not believe that I am experiencing severe or continuous depression. Yes, I am exhausted mentally and physically. Yes, I am sleeping more, not functioning as well as I'd like, and not participating in activities or going out of the house as much as I'd like. Yes I am frustrated and at times overwhelmed. Yes I admit that there are times that I get "down". The fact of the matter is - I WANT to do things, I DESIRE to do things, I FIND PLEASURE spending time with my family, and I ENJOY life. I like watching movies, though at home is my preference now, and find myself smiling and laughing. None of that has changed. I just DESPISE how my body feels afterwards (and sometimes during). The energy and strength is just not present the way that I need it to be, even for simple everyday task. It's not that I'm sad. It's not that I want to stay home. My body just completely shuts down on me, and yes, I hate that. Contrary to what some may think, I do not sit around during the day crying over what I can't do. My focus is not on my limitations. Instead, I usually take things in stride - go with the flow - and try to listen to what my body tells me. There are times that I actually rebel against my body and do things that I want to do, regardless of how my body will react or what consequences may follow. Yes, I often regret those decisions, at least partially. Yet, I also see the value and pleasure - even if short-lived- in the choices I make.
My family and those closest to me recognize the "real" me most of the time. (Even if I do try to hide my symptoms.) They see my heart, my drive, my Faith, and my positivity. My health may be compromised, but my love for others shines through effortlessly. Sometimes I have to strive harder to demonstrate what I think positivity should "look" like. Deep down, I want to appear positive and happy, I want to appear like I have everything under control. I want to appear as though I have no worries or concerns. I believe that this is my way of protecting the ones I love from seeing the reality of uncertainty and pain of continued sickness. I call this being "fake" at times, though in all honesty it's not completely the truth. My intentions are not fake, they come from a place of love, trust, and yes - even inner positivity. So while I may put on a mask to hide how I feel physically or mentally at the moment, the mask is not completely a lie all of the time. Many times it is a reflection of my inner heart and soul that's being hidden or held hostage by the fatigue, nausea, pain, or concerns. For example, smiling when I feel my absolute worst or when I feel like I can no longer go on. The smile may be "forced" or may even occur naturally, yet it's still created by the love, comfort, or peace that I feel for being around whoever it is - whether it's a family member or even a doctor. A smile doesn't necessarily have to mean that I am completely happy or feeling great. A smile from me can also represent that I'm still human, that I enjoy your company, or even that I trust in the care being provided. A smile can mean that I treasure someone so much that I don't want them to worry or even though frustrated and feeling awful, that a part of me is still alive and wants my medical team to see me as a person and actually like me enough to give their all to help me feel better. It's easier to help a kind person with a smile. In addition, smiles are contagious, so smiling (even if it is a pretend one or a front) helps others around me smile, which is undoubtedly a nice "pick-me-up" when I'm not feeling well.
I'm beginning to understand and recognize that being positive doesn't mean that I am never sad, upset, mad, doubting, scared, or unsure. I can experience all of these emotions and more and still be authentically positive. Positivity can be witnessed by smiling when in despair, hopeful in the future, or a hug when falling apart. Also positivity can simply be portraying gratitude to loved ones that are near and expressing appreciation for those that help me along the way. It's having Faith that God will pull me through, the strength to just hold on for just one more day (or even hour if needed) until things calm, and acknowledging all of the miracles and beauty surrounding me every single day. Positivity is never giving up even when everything else in my body tells me otherwise and believing that everything will fall into place one day - just as God intends it to. There may be numerous things going wrong, but there are always just as many things going right. I just have to remind myself to take a moment to breathe and guide my mind to focus on the things that are great in my life.
Positivity is internalizing that even when the battles are rough and the war within my body seems relentless and never-ending, that I am still blessed beyond measure - surrounded by an almighty God, loving family, compassionate friends, and a caring medical team.
Anyone that knows me, knows that I have a difficult time determining when symptoms increase to the point that I need to make a special point to contact and inform my home nurse and/or doctor. It's easy for someone else, like family members and friends, to suggest placing a call or sending an email when symptoms have progressed. However, for those living with chronic illnesses, it's not so easy. We deal with symptoms every single day so it becomes a trivial matter. I don't know about others, but for me, I begin second guessing whether or not the symptoms are important enough to ask for medical help or advice. My fear is that I will begin to sound like a whiner, hypochondriac, or nuisance over "minor" things which will make it difficult for others to believe me when something serious is happening. This mentality, though it has great intentions, can be extremely risky for me. There have been numerous occasions where I attempted to "tough it out" too long, resulting in dangerous consequences. It's difficult determining where to draw the line, when does survival actually become denial.
You see, the past couple of weeks my energy and strength has been more depleted than normal. I have been battling increased nausea, frequent lightheaded spells, sporadic discomfort around my PORT, moments of low grade temperatures, and occasional spurts of tachycardia. None of these symptoms are completely uncommon or new for me, so even though my family had been urging me to talk with my medical team, I didn't see the need. I mean, what could they actually say or do that would help? It's not like I was in continuous debilitating pain or completely unable to survive. I was trying to take the harsh moments in stride and hold on until calmer moments returned. I can't possibly reach out to my medical team every time I am feeling rotten. I have to learn to live with pain, discomfort, nausea, and fatigue as in some degree they have become "my normal."
Eventually, after days of persuasion, I did break down and call my Home Health nurse to let him know about the off and on again discomfort around my site. I told him that my family was concerned, though I felt like I was alright. I answered a few questions that he had and felt comfortable knowing that he would be out on Friday to de-access my PORT for the weekend. Since all my vitals appeared fine and I was not in any discomfort at the time, we decided that we would monitor the situation over the weekend. During the weekend, I began having more spells of chills and low grade fevers, with my exhaustion levels rising. When Home Health came out on Monday to access my PORT, I was still experiencing chills. Being cold is not uncommon for me, but apparently wearing my favorite sweatpants and sweatshirt while wrapped in a heavy comforter during the summer while everyone else in my house is shirtless or in tank tops is considered odd. Go figure. My nurse did not like the symptoms that I was expressing, even though I reassured him that I would be okay. However, my heart rate being elevated made him think otherwise. While in my driveway he called my GI, who immediately placed an order to draw labs and cultures. It wasn't long before my nurse returned with the supplies to begin my bloodwork. Unfortunately, he was only able to draw peripheral labs (from arm) since we were unable to receive any blood from my PORT. In order to figure out what was going on inside my PORT, I had to visit the VIR (Vascular Intervention Radiology) department Wednesday morning. This visit was rather quick and I returned home feeling rather normal, well MY normal anyway, and felt confident that everything was fine. I firmly believed that I was just experiencing another "flare".
To my surprise, I received a phone call around 8:10 Thursday morning from my GI. This was very unexpected and sent my head spinning. He informed me that my peripheral cultures from Monday were negative, however, the PORT culture from the previous day was Gram Positive, indicating an infection. All of a sudden, I was in a whirl of confusion. How could it be possible? I had been feeling rougher than normal, but not to the point that I couldn't handle it. An infection in my PORT??!! I know how dangerous PORT infections can be. I also know that having an infection there can drastically change if it enters the blood stream, placing me at a risk of becoming septic. I did not want that to happen. My GI stated that I would have to be admitted to the hospital for IV antibiotics and that I would most likely have to have my PORT removed. Red flags overwhelmed me as I began worrying about how I would be able to stay hydrated without my PORT. A few minutes later, my GI called back and told me that I would be able to receive IV fluids along with my antibiotics while I was in the hospital. I was then instructed to enter through the emergency department and let them know that he had requested that I come in due to a positive culture in my central line.
Emergency Department!!! Ugggh - I did not look forward to this at all. How long would I be stuck in the uncomfortable waiting room. Thankfully, everything went very smoothly. Registering was a breeze, as my GI had already electronically documented my expected arrival and reasoning. Immediately, I was led to a bed, the ED doctor came to speak to me, an assessment was taken, fluids were begun, and an antibiotic - Vancomycin - was started. I was rather impressed at how easy everything was moving along. Prayers were being answered.
I was even surprised and more than delighted when I saw who the doctor that was "officially" admitting me was. It was none other than, Dr M, my favorite all-time hospitalist. I had not seen him in over 3 years! He remembered me and my case very well. We spent a little while catching up, discussing new health issues since we had last spoken, and current symptoms that may have been related to the infection. I explained to him how difficult it was to distinguish which symptoms were worth noting and which were just common occurancies, especially being that none of them were truly uncommon. He completely understood my hesitancy in reaching out for help, though also reminded me that I know my body better than anyone else. After our conversation, he promised me that I would be well taken care of, that he would place me in the care of a doctor he thought I would feel comfortable with and a NP that I've become to know well. In addition, he said that he would make a note that I would be in control of my tube feeds and that I would be able to take a break or adjust the rating as I needed. He was the same doctor that I respected and appreciated years ago. Calmness overcame me until........
Craziness overwhelmed me. All of a sudden, not even 10 minutes after my doctor walked away, I began feeling really strange. My heart began thumping really loud in my chest. It was pounding harder and harder as my heart rate steadily rose higher and higher. My head felt like pressure was continuously building, heat radiating from flushing, and according to my mom changing to darker and darker shades of red. It honestly felt like my chest and head were going to explode at any time. As I tried to stand up and walk to the bathroom, my blood pressure dropped and dizziness overcame me. Standing there, depending on my mother and nurse to hold me up, while waiting for someone to grab a wheel chair for me.
What was going one? Why was I all of a sudden feeling so awful? Come to find out, I had a reaction to Vancomycin. They call it "Red Man's Syndrome". I had never heard of that before, but learned really quickly that it's something I never wanted to experience again as well as something that the nurse's were fearful of. Apparently, it can be extremely dangerous, even lethal, if the reaction was to continue. After a break from the medicine, we were able to restart it and successfully administer it at a very slow rate.
Everything else during my hospital stay was rather uneventful, which I did not mind at all. My PORT was removed on Friday, labs were monitored, tube feeds managed, and IV fluids with Vancomycin were administered. Absolutely everyone that I came in contact with during my stay - doctors, nurses, nursing assistants, etc were extremely helpful and pleasant. I honestly left without having any complaints at all regarding the care I received from the hospital staff. My GI even came by to visit me during my stay, which means a lot. I can't begin to explain just how important and reassuring it is to have a GI that truly cares about me as a person.
All in all, I had a positive experience with a situation that could have been much worse. Once again, I was reminded of the amazing support team I have surrounding me. I am truly blessed!
Life is full of choices, but how do you know which choices are the best for your health, mind, and spirit? Many times I found myself faced with decisions that I don't know how to answer. Sometimes I choose to follow my heart while other times I use my logic, sometimes decisions are made in the best interest of others, but then there are times when I try to look out for myself. At all times I try to consider which option, which road, God would want me to follow. I'm not always successful with making the absolute best choices. I mess up sometimes, but usually have good intentions. So what are some of the choices that left me Torn?
Medications v/s Side Effects - outweighing which offers more benefit and less risk
Accompanying family to store, movie, or restaurant v/s Staying home - trying to find the balance between enjoyment with loved ones and energy reserves and depletion afterwards
Fight it out v/s Ask for medical assistance - struggle that happens often as I sometimes allow my "bravery" to actually become "stubbornness" due to fear of what medical attention may mean
Surgery or not - Luckily for the most part I feel like I've made the best decisions possible here, but once again considering possible benefit v/s possible risk
Living v/s Giving Up - pretty self evident choice there. Left considering how much am I willing to allow my family and I to endure. Luckily Faith and Love has helped me pull through, though some days are much more demanding than others.
The largest and probably the most difficult decision in my life, currently, revolves around working. For a long time, according to my family, too long, I attempted to continue teaching while trying to figure out my health. I was not as effective as I wanted and maybe should have been, but did the absolute best that I could do under the circumstances. I struggled, was required to miss a lot of work due to health and health related appointments, and found myself prioritizing my students class experiences before my personal well-being. I truly ran myself into the ground until my body finally crashed. After being out on short-term disability with the school system for almost a year, I was forced to decide by July 1, 2015 if I was going to be able to return to work or if I needed to apply for extended short-term with the school system.
Hesitantly, I made the difficult choice (even though my health was not truly giving me a choice) to give up my position at my school. I loved being the 5th grade science teacher there, but going on extended sick leave to achieve better health was requiring me to not only lose my 5th grade position, but also my school. I was told that when I became able to return to work, Central Office for my school system, would determine which school I would be assigned to based on vacancy needs. Due to my health, pain, energy, and upcoming surgery at the time, I bit my pride and tearfully cleared my classroom. As difficult as the decision was, looking back I know for a fact that it was the best option for me as the surgery did occur and recovery was, well, quite a challenge physically and mentally. As heart-breaking as it was, closing that chapter of my life and putting my health first was a necessary and worthwhile choice.
But here I am again. My extended sick leave is ending in a couple of months, and once again I am left with a choice. A choice that is dependent on not only myself but also my medical team. This choice is leaving me torn and fearful. I have to decide if my medical team and I believe that I should apply for long-term disability from the school system (which would heartbreakingly require me to resign from my dream career at the age of 38) or attempt to return to work before December. Honestly, as hard as it is for me to admit, I understand that long-term disability for now is quite possibly the best and only reasonable option at this time. I am still struggling with my health, energy, and at times emotional state. I currently require IV hydration a three times a week, which requires home health to come out twice a week to manage my PORT. In addition, I have medical appointments that are necessary for monitoring my health status, managing my medical devices, and maintaining mental stability. All of which would require a lot of time away from the classroom.
When considering my options, I have numerous questions that enter my mind. What can I do to return to better health and once again become the teacher I pride myself in being? Is it still within my realm of possibilities? How can I be the best possible teacher, providing my students with the leadership and knowledge they deserve, and still be available for much needed medical appointments & therapies? How can I be a positive role model, effective teacher, and successful in the "working" world when I can't even attend a movie or short errand without drastic physical consequences for days? Due to my lightheadedness and often symptomatic spells, without warning, my family (and I) still don't feel safe enough for me to even drive. How could I be responsible for a class of 30 kids? Would I create more harm for myself? Would I put children's well-being at risk? Deep down, I know the answer to the majority of these questions. It's just very difficult for me to completely accept the reality sometimes.
But then the decision is not completely mine to make, is it? I am going to have to place my trust in my medical team once again. I have to trust that they know what is in my best interest and will help me make the most appropriate decision for my health and well-being.
In this video I am sharing what alternative nutrition may look like for those with Gastroparesis and Functional GI Motility Disorders.
Many in our community are literally starving and dying from complications from these devastating illnesses. Some are able to survive on small "bites" of food throughout the day or liquid only diets, still suffering the pain, nausea, and other relentless symptoms. Others are dependent on Feeding Tubes, IV fluids, and/or TPN to receive the nutrients that they need, but still facing many of the awful symptoms on a daily basis. There are very few treatments available, many of which are unreliable, carry black label warnings due to severe side effects, or not even FDA approved in our country. Please help us raise awareness! We're not invisible. We're tired of our watching our friends and members in our online communities DIE from malnutrition, dehydration, starvation, organ failure, sepsis, etc as a result of the debilitating disease.
How can you help?
Sign to show your support and ask congressional members to support research and funding for Functional GI Motility Disorders.
Donations if interested can be made to
IFFGD at https://www.iffgd.org
or AGMD at http://www.agmd-gimotility.org/
#TakeABite4GP and share on Social Media
Learn more about GP from both the medical and patient side by checking out www.curegp.com
I may bend, but I refuse to break!
Everyone faces their own trials through Earth's journey. Whether it's relationships, health, finances, inner struggles or a combination of all, we have choices to make. Some will be easy, some will be hard. But regardless, we hold the power to decide how we will handle the challenges.
I choose to be ME! You can like me, love me, or even hate me, but I will remain true to myself.
I choose to remain kind. I choose to openly care. I choose to advocate for my health community.
I choose to maintain my faith in God and humanity. I choose to provide hope and inspiration to others when I can.
There will be haters. There will be those that believe the world revolves around them. There will be backstabbers and fakers. There will be "friends" that appear to be around, but when called upon are nowhere to be found.
See the thing is - though I may care what others think - my life does not depend on others' approval.
If you don't love me for me, or respect me for what I stand for, then you can step out of my way.
Life is not full of happiness and joy 24/7. Pain, sorrow, sickness, and tears are inevitable.
I choose not to sit silent! Criticism will not stop me. Mocking will not hinder me. The hurtful comments and words may put a dent in my spirit, but they will not break me. I will regain composure and continue marching forward.
One thing I've learned in life is that nothing is perfect, no matter how hard you try. We must be willing to stand up when we fall, fight for our own wellbeing, be flexible, and willing to bend.
I will not lie! I have experienced life struggles that have cracked me. More times than I can count I've depended on God to help heal my mind, heart, and soul when I felt like I was falling to pieces. Life has wounded me, my health has bruised me, people have disappointed me, tears and sorrows have drowned me.
Faith in God and HIS plan has saved me numerous times.
So while some sit high on their thrones, throw insults to injure, or make their judgemental accusations, I will stand tall! I will remain strong!
I have an amazing team of warriors in my corner and GOD as my leader.
So attempt as you may, I will take your heat. I will bend, twist, and maybe even crack.
I will survive through disappointments. I will take my health one day at a time.
I will live from my heart.
The devil and his messengers may try to destroy me.
God may send me on journeys that I don't completely understand or lead me into battles that are a test of my faith; All with a purpose of developing me into the masterpiece that HE envisions.
I'll continue to accept all challenges and overcome any obstacles that become a part of my journey.
I have an everlasting trust that God will not allow me to fully break!
HE will continue to send calmness and support during my storms, even carrying me when I become too worn to endure any further.
God is my maker and HE is my protector.
I may bend, but I will NOT break!
© 2015-2017 Trisha Bundy ALL RIGHTS RESERVED
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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