As I sit here with my family, patiently and eagerly waiting to say goodbye to 2015, I can't help but reminisce.
This year has been a difficult one for me that is for sure, both physically and emotionally. It would be so easy to be lost in all the day in and out pain with nausea, personal disappointments, losing who I was, uncomfortable medical tests, horrendous trial and error treatments, self-doubts, and sadness of friends that collected their angel wings.
However, I choose to end the year in the same fashion I hope to live the new one - in positivity. I have so many blessings that occurred through my journey this past year. God has a reason for all of the obstacles I have come across; I just have to open my eyes and allow my heart to see them.
So with gratitude I am going to share why 2015 was a GREAT YEAR, even with my illness.
- Learning to let God carry me, when I felt like I could endure no more.
- Stronger & Deeper relationship with my family, as I relied on their assistance & love.
- Increased appreciation for the little things, that are easy to take for granted.
- Friendships formed across the world, throughout the US, Germany, UK, Australia, and beyond.
- Self-discovery through personal blogging & facing fears head on
- Learning from great inspirational friends how to be advocate, draw strength, and help others by stepping out of my comfort zone and sharing my story.
- Trusting myself, God, family, friends, and even my Drs while also having the bravery to speak up about what I needed.
So out with the old year and in with the New -
but keeping my mind set on the gratitude that's due!
This time next week I will be physically preparing for my colectomy with ileostomy surgery. As a result of severe colonic inertia, my entire colon will be removed. The end of my small intestines will be pulled to the outer part of my abdomen to create a stoma which will be covered by an ileostomy bag.
Currently, I am trying my best to prepare mentally for this surgery. If you had asked me a few weeks ago about how I felt about this upcoming surgery, I would have replied that I was very excited and ready, with no reservations or worries. I felt so brave! Though I still feel confident that this surgery is necessary and that it has the possibility of improving my quality of life while decreasing some of my troublesome symptoms, I am becoming extremely nervous.
As the surgery date draws nearer and nearer, I am becoming more and more anxious and even scared. I do not fear or even second guess the choice that my medical team and I made, but instead fear the reality of what life will be like afterwards. If there's any improvement at all, no matter how small, the surgery will be worthwhile. I am well aware that it will not be a "cure all". I will still have other issues that aren't completely resolved within my digestive system, will most likely still need my feeding tube to aide in nutrition, and still have some symptoms. BUT, less symptoms or less severe symptoms would be a very welcome change! Not to mention, the relief of no more colonic issues! What a sigh of relief that will be! It's just difficult to prepare for something you've never truly experienced.
How painful and how long will the recovery period be?
How well will my body, mind, and family accept the "new" me and my lifestyle changes?
I have faith that God and my loved ones will help me survive this upcoming battle, but it's still scary. While trying to remain realistic, I can't help but hold on to high hopes. I just pray that I don't set myself up for heartbreak or disappointment in the process.
As my new journey begins, I will try to remain positive.
I am envisioning a majestic rainbow following a severe thunderstorm. It may be a rough ride for a while, but something beautiful and calming will appear when it's all said and done.
So, I’ve spent the past week considering where I am in my “chess match.” Initially, I said that if I am more than just a bystander then I must be the board itself. I stand by that answer, for now at least. I have a feeling, after contemplating the scenario, that my answer should probably be that I’m the one moving the pieces. The actual player. I know for sure that I’m not the pieces themselves, instead they represent my positive and negative thoughts/beliefs. I understand why I SHOULD label myself as the manipulator, mover, player, etc - but don’t feel as if I have that strength, power, or control at this time. Instead, I feel as if I’m the board - just trying to contain all the pieces, keep them as steady as possible, and provide them options to change/move as needed. I don’t know if there is a “fancy” briefcase style board that not only provides the playing surface, but also a safe location to store the pieces, but that’s the style I’m envisioning. Offering me the capability of “carrying” everything with me, wherever I choose to go. Not going to lie, I would LOVE to hide the entire briefcase or simply discard it at times. I would even love to remove many of the pieces - almost wishing it was like checkers, where I could simply jump over the obstacles and then remove them - especially the dark troubling ones. I understand that life takes much more patience and strategy than any board game, that there’s not always a clear cut winner (as in games), and definitely much more difficult as you can’t just start over when you get tired or want to “replay” for different results.
Keeping this in mind, I tried NOT to focus on metacognition the past 2 weeks. I haven’t been completely ignoring my thoughts, but not “searching” for them either. Instead I have tried to allow my thoughts/fears to appear naturally on their own and decide then how I wanted to respond and/or handle them - trying my best not to second guess myself; just to do the best I knew how at the moment. I have tried to ignore symptoms (and my health in some regards), persevere ahead, and admittedly have even been stubborn to achieve my valued goals - which unfortunately simultaneously caused me more pain and misery physically. I have been trying to survive on fumes which has really caught up to me, as my nutritional intake has been non-existent for the most part, thanks to it creating too much additional pain and nausea. Sometimes, I can’t help but feel like a failure when my body completely decides to revolt. (Such as the severe pain and exhaustion I faced after my nephews birthday party this past Sat, even though I CONSUMED NOTHING and JUST SAT there watching the kids play. It’s so frustrating!!) It seems the more I try to do, no matter how much I emotionally enjoy what I’m doing, the worse my body fights me. I give ALL my energy, including my reserves, but it just doesn’t seem to be enough. I can’t help but wonder at times if it’s even worth it. I know the answer is yes, at least in the long run. It’s just Guilt, even when I know I shouldn’t feel guilty, isn’t easy to avoid. Infact, it’s nearly impossible. But I keep going, I have to and I choose to, for my kids and family. And yes, for myself as well.
During the past couple of weeks, I came to the realization (maybe because of the recent dr appointments) that I do actually have fears and apprehension about the upcoming surgery, that I am worried about choosing the best option for me, and that I am also concerned about how it will impact my future. I honestly feel at peace about having the actual surgery, I just don’t know what to expect afterwards. Having a wonderful trustworthy medical team that consist of compassionate doctors that truly seem to care and listen, helps reassure me greatly and helps me feel more comfortable with the decisions for sure. Talking with other patients and a loving family helps as well. I hold high hopes that the surgery will help me find some much needed relief, but I also know that it will not “fix” everything. Realistically, I feel that after the recovery period of the surgery, I will have less pain, less bloating, less nausea, more nutrition, more energy, and more “life.” I will most likely still have issues with my upper digestive system, but hopefully I will have less symptoms and more strength so I can return to activities I miss, including practicing softball & basketball with the kids, swimming, camping, and even teaching. I’m not going to lie, I am worried about the recovery period- but praying the “No Pain, No Gain” motto will hold true in this scenario. I expect that it will take a few months for me to truly heal (emotionally and/or physically) and am aware that I will need to be patient with myself. I’m also aware that there will be lifestyle changes and the possibility of self conscious issues. Now that I know my surgery will include an ileostomy, I am trying to focus on the pros for it when compared to the resection, and not allow myself to worry about the cons as they may or may not even be an issue for me. Staying positive is the key. I can’t bring myself to share all of my fears with my family. I have tried talking a little to my husband and mom about my feelings about the surgery, but find it a bit difficult. I just need them to be strong for me and to help me remain hopeful and focused on the end result. If I share my fears, I’m afraid that they will begin second guessing me - causing more confusion. I need them to stay positive, not worry about the risks involved, not to consider the what if’s, and definitely not to set me on the path of what if thinking. At the same time, I am scared to be too positive around them - as I don’t want to disappoint them if my other symptoms continue, which is what happened with the gall bladder surgery. As much as that surgery helped - that horrible intense pain removed - my family was disappointed because it didn’t “cure” everything. They had prepared their minds that it would “fix” me, that I would be able to return to teaching and possibly return to eating some. (Like them, I had planned on being able to teach afterwards, but unlike them I already expected that my eating capabilities would most likely not change.) Their pain and disappointment, my letting them down, is what accompanied me during my misguided path of depression last January. I can’t let that happen again. My goal is to determine how to be cautiously optimistic while also staying grounded to reality. Attempting to figure out how to prepare my family so they can think positive, but not set unrealistic goals and/or expectations. My current thinking (for this situation, not life itself) is that it’s better to be pleasantly surprised by surpassing what’s expected, than to be defeated from dreaming too big.
Now for this week’s question…. What is my vision of my “Middle Ground”?
I see my “Middle ground” as being a place that is stable. Where the land is mostly flat, with a few rolling hills and valleys, but high enough where floods are not an issue. A safe place where I don’t have to fear drowning in fears or pain. A place full of laughter, fun, and happiness with my family. A place where I am actively living, participating in the moments, and able to receive nutrition without horrible pain or consequences. The “middle ground” would allow me to recognize when I need rest breaks and take them before reaching completely exhaustion. I would be balanced, not at the extremes, with guilt as a distant memory. I would be able to hold on tight to my values without sacrificing my own well being, while also taking care of myself without seclusion or withdrawal. On the “middle ground” I would feel surrounded by comfort and care while also being able to successfully provide others with the attention and love that they deserve. I would spend much less time curled up in pain, discomfort, nausea, and fatigue. Additionally, I would be able to “play chess” and create strategy plans, but not let the pieces and/or results overwhelm me. If one strategy failed, or if the “dark side” started gaining control - I would be able to stay calm and collective while revising my “positive” plan of action. If I was residing at the “middle ground” I would be able to successfully manipulate and rearrange my “chess pieces” to meet all of my physical, emotional, and mental needs.
Goals for upcoming weeks -
-Enjoy the holidays with my family. Find time to treasure memorable moments, even if I don’t physically feel up to it.
-Mentally and physically prepare myself for surgery as best I can, including continued attempts to improve my hydration and nutrition.
Living with Chronic Illness is undoubtedly a roller coaster ride. Day in and day out there are so many ups, downs, twist, and turns. For me, and many others I've met, we've been on some torturous rides. The ride can become so intense, quickly moving at a nauseous stomach riveting pace, or slowly begin inching up toward improvements with a hope to rest, only to be caught off guard in a torpedo downfall. Dizziness, confusion, regret, and sickness can quickly intensify with no quick escape.
Like everything else in life, the roller coasters we experience throughout life change from one ride to the next. Sometimes, there is just enough thrills that you can actually enjoy the ride, laugh after the drops, and breathe a sense of relief. Others may have us screaming and terrified for a short period of time, but we are able to walk away with the pride that we "survived". Others seem to never end, the bumpy ride just keeps throwing us from side to side, flipping us upside down, and no matter how much we want to get off - we are stuck until the ride eventually ends.
Regardless of which "roller coaster" we are on, we have to learn to "live" until the journey ends. Trying to find something or someone to hold on to, find something to help steady us, and even stride to find some enjoyments along the way. Because one day, the ride will end. We WILL make it to the end.
And when we do..... a beautiful, calm, relaxing, and exhilarating celebration will await us. So stay strong, keep fighting, and never ever give up!
What do I value? How can I allow myself to be emotionally connected, present, and alive but also allow myself to be vulnerable, sad, and an emotional wreck or disaster? Is there a way that I can protect myself, kids, and family from heartache and additional pain while not distancing myself from the very people and relationships that I treasure?
Over the past couple of months I have been losing who I am. I’m not the me that I used to be, should be, or want to be. I love my family so very much but sometimes feel as if I am emotionally distancing myself. I don’t know why. They are the most important and meaningful part of my life. They are my world and I would do anything in my power to protect them. Maybe I just love them so much that I don’t want to hurt them or disappoint them. I don’t want to be the reason for their sadness. I hate seeing them hurt, especially if it’s because of something that I could prevent or control. At the same time, I know that this time of their life is so influential to how they will look at life as they get older. When they are older and reflect on their childhood - I want them to see and remember how much they were loved. I want them to be able to reminisce and cherish fun and happy memories. I don’t want them to see my illness or the limitations that have occurred as a result. I know that no childhood is absolutely perfect, I get that.
I just spend so much time and energy fighting my physical pain and fatigue, that I don’t have the strength to fight the emotional battles that come with it. I feel as if that’s wrong but at the same time I feel like it’s the only way that I can survive. At times, I feel so fragile, torn, weak from having difficulty getting by physically that I honestly don’t want to face the reality of how it’s impacting me emotionally. But at what cost?
I miss my life. I’m not talking about missing the “old” me necessarily. I think I have accepted my illness for the most part. I miss the spark that I used to have for life. I miss the laughter, genuine smiles, love, and relationships. I miss enjoying life with my family and creating memorable experiences. But I don’t know how to retrieve that part of me. All my available energy is exhausted with day to day survival. My “good” days are opportunities to build up a little reserve for the all too often “bad” symptom days, which are more common than not. I honestly want and need to rebuild and reconnect, truly reconnect not pretend to, for not only my personal sanity but for my kids as well. I just don’t know how. It’s so much easier to pretend than to be real. But definitely not as pleasurable.
I get it - you have to have thunderstorms to appreciate the rainbows, you have to have sadness to appreciate true happiness - but the big “what if” (I try so hard to avoid “what if’s”), but this what if can’t be hidden. What if I can’t handle my emotions? What if I destroy myself or my “image” in the process? Am I willing to chance that? In my heart, I know that it is more than worthwhile - but my mind apparently doesn’t always agree. I fear that if I do allow myself to be vulnerable, I will push away the ones that I love or create unnecessary sadness in my family. I do fear that my mind will be flooded with negative and scary thoughts, which for the most part I feel as though I could handle. But what if the thoughts overwhelm me to the point that I don’t think rationally? I would like to believe that would not be the case, but what if they burden me on a really poor physical day when I’m at my weakest? How can I prevent that? Will I be able to sidetrack them?
My current goal is to test my boundaries. However, that is so much easier to say than do. I will continue to force myself to watch movies, participate in family activities, in hopes of rediscovering myself and “living” in instead of just “being” in the moment. I hate to say the word “force” because deep down I do want to do these things, but it’s so much easier and less daunting to just be there sometimes, not investing myself totally, or avoid completely.
I just feel like I’m always walking on eggshells trying to decide either how much I’m willing to share about how I’m feeling or if I should even bother to share my thoughts/feelings for that day. I don’t want others to see me as a “downer” and I don’t want to be responsible for always ruining their positive moods. I don’t want them to feel guilty about the positive experiences or moments in their lives. I don’t want them to feel as if they have to “downplay” special events or moments because they know I’m not feeling my best. They deserve to be happy and joyful and it’s not my right to deny them of the opportunities to share and bask in their joys. Sometimes, the only way that I can ensure that I’m not the one bringing others down is to pretend to be ok. I admit that this isn’t always the case. On days when I feel decent, I actually can find joy and be genuine, just wish these days were more often and more of the norm instead of an exception. (Hopefully, surgery will help me have these treasured days more often.) On days when I feel my absolute worst, my family can tell because I don’t have the strength or energy to pretend or hide. I do try to open up to them, just more hesitant sometimes. But there are so many other days when I feel horrible and distance myself because I don’t want to disappoint them again. I hate having them see me like this. I know they love me just as much as I love them, but I don’t want them to worry about me all the time.
This illness has changed me so much, both in some positive and negative ways. On a positive note, I cherish or treasure simple moments much more. I’ve learned to put in perspective what is most important to me. I’ve always had a great relationship with God, but I feel as if the relationship has strengthened even more. On the negative side, I feel awful the majority of the time (with decent/good moments sprinkled in), I’ve become a pretty decent actress, I’ve just misplaced my zest for life. Sometimes I am either too patient, to the point of not caring, while other times I’m not patient enough causing the smallest things to irritate the crap out of me. Thankfully it’s not all the time, usually during “bad” times, but why is this? I want to be involved in conversations. I want them to enjoy life and have fun, as do I. Is it simply because those are times when I’m feeling at my worse physically and all my focus is on surviving the moment? Is it because during these times I’d rather close myself off than accept what I’m feeling? Is there just too much going on that I’m overwhelmed? I personally believe that sometimes it's just from pure exhaustion, but I don't know.
What I do know, is that I’m NOT always the strong person that everyone else sees in me. I try to be, but I’m not. I truly believe that others, especially my family and friends, greatly overestimate my strength. I try to live up to their thoughts and perceptions, but the more I try the less I agree. If I possessed this strength that they think they see in my, then why do I have to try so hard not to give up on myself? True, I do have some strength, God entrusts me with it, and I do feel at peace and do feel comforted and supportive the majority of the time. But I’m not strong enough all the time. And that’s okay. God’s ok with me not being strong enough, that’s when he can carry me. I’m sure that my family would be alright with me showing my weaknesses and vulnerabilities at times. They are aware that it’s impossible to meet all expectations all of them time. So why is it so hard for me to just let it be, go with the flow naturally, instead of pretending to calmly roll with the tide? What am I so afraid of?
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
More Blog Entries