“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.”- Eleanor Roosevelt
Courage over Fear. To reach a truly ideal state, you must become self-aware. Know who you are and where you’re going. For the last year I’ve been working on developing my own identity. I’m learning to love myself while gaining confidence. My heart and mind have been aiding in mending my body. I’m just learning to love…me.
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I almost gave up on this journey. Its tough for me write this because I know I’m stronger than that. I cried all day because I felt so hopeless and my surgeons kept saying you’re fine but in my heart I knew my body wasn’t right since surgery. I was constantly question above the Lord and his plan for me. Literally saying “why me? What is your plan for me?* So I went to my gastro doc and he walked an told me what was wrong. I’m my mind I was thinking that he’s just going to agree with my surgeons and imply that I was just “crazy and it was a mind thing”. Well true, I am having trouble mentally dealing with this major transition. To explain my feelings I just have to use this example….I felt like I was penguin taken out of the cold and snow and placed in one of the hottest places imaginable. I felt out of my element and unaware of how to survive such a huge physiological change. For some reason, I would often forget that my ileostomy is only temporary. I forget that my decision to go ahead with surgery will probably be the best that I have ever made. The quality of my life will be increased and I will feel “normal” again. It’s typical of us humans to focus on the negative things in our lives rather than the positive. My friends and family are here for me but there are times when I feel totally isolated because I’m different. On some of my many emotional rants, I’ve cried and said, “you don’t know what this is like! I have pain every day and you don’t have a bag on the outside of your stomach!” Yes, I have said this to my family. It easy to say that my emotions got the best of me.
Now back to these thoughts of “giving up”. I’m told everyday to keep fighting and to stay strong but it’s tough. I’m only human. When I visited my GI, he validated my pain and thoughts that something was “off” with my body. I have an overactive ostomy. I empty extremely faster than other ostomates and can become dehydrated within 24-48hrs. This explains my frequent and traumatizing trips to the hospital. For me, drinking Gatorade won’t do the trick. According to my doctor, he has other patients who experience the same condition and have to come to the office for fluids every other day. My body has this vicious cycle in which it gets pumped with fluids for 3-7 days in the hospital, I then leave and go home, I drink my fluids and try to stay hydrated however my body and it’s output don’t understand it. My brain and my small intestines aren’t communicating to each other as they need to. As my doctor explained this I finally felt hopeful and excited about my future. I felt as though a weight had been lifted off my shoulders….the weight of the UNKNOWN.
So where do I go from here? How do I change my thinking? I can’t even think of an answer but I do know that I don’t want to give up on myself. I don’t ever want to feel like my mind, body, soul are at the bottom of an endless pit in which they can’t be fixed again. It doesn’t feel good to think that I even thought about giving up. I can’t give up now because my fight would then be in vain. I can’t give up because my new spiritual connection with the LORD is fresh, new, and trusting. I’m still working on placing my faith in GOD with no equivocations. So for anyone who is reading feels like giving up, quitting, and losing faith…..DON’T. Understand that your struggle and test will become a testimony. Remember that there is a plan that you may not understand just yet. I still don’t have my “Why Me?” question answered yet but I know that there is a purpose. I just have to follow and trust my GOD. …Until next time….
When you’re in and out of the hospital like me it’s easy to build a relationship with your nurses. Now of course I have my favorites but there is one nurse that I have been working with who is like the most dope nurse that I have worked with at Candler in Savannah. Her name of course is Ashley and I feel like she provided me the relief that I needed when I was admitted. I worked with her everyday except one this last time was I was in. I wanted to take a picture with Ashley but I wasn’t able to because I became upset for various reasons during my discharge. I just want to thank Ashley for her compassion and empathy that she had for me. I really want to thank her for the compassion as well. Somehow I will let her read this post. Did I mention she also went to UGA for a short time and we sort of had this DAWG bond if you know what I mean… I miss her but hopefully I don’t see her again until my next surgery date. Until next time Ashley….
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Below my mom who has stayed in the hospital with me a majority of the time is serving as my first guest blogger. She has written about her experience as serving as a primary caregiver for myself. This is the perspective of a mother who is a primary caregiver to a daughter with a chronic disease. Enjoy!
Anyone that really knows Chanda and myself you would think that we are like oil and water! Well WRONG! LOL. We will argue about the color of grass and the sky! We bump heads about everything! Sometimes we just argue to argue! Well guess what? We figured out that we are so much alike. Does Chanda love me? YES! Do I love Chanda? YES! Well I heard a sermon a few months ago “The Other Side of Through” So now when things get tough I remember that sermon. Now you just can’t think this is a one time thing! You may be going through several things at one time but it still applies! I have been going through a lot these past few years, but nothing could have prepared me for “THIS”. Day after day watching my daughter in pain, vomiting and crying just rips my heart out! Feeling so helpless. All I wanted to do was take her pain away! Chanda, the one who wants to save the world! Chanda, the sassy confident, beautiful young lady. Chanda, the one willing to put everything on the line if she is right! Chanda, the one with that big grin on her face! Chanda, the one that believes in God, Family, Friends. Chanda, the fashionista! Chanda, the one just like her late grandmother who’s favorite show is The Food Network! Chanda, such a smart women! Chanda, the spoiled one. Chanda, the good friend! Chanda, the great sister! Now one more thing I can add Chanda the STRONG one! She maybe 26 but when I hear her in the middle of the night in this oh so quiet voice say” mommy my bag leaked, I’m sorry” She did not ask for this to happen to her body, but she is just rolling along one day at a time. On one of the many trips to the hospital since the 18 th of November I watched the nurses attempt to start an IV 6 times and Chanda did not say a word or complain. I can’t even remember how many times the IV infiltrated and to find a new site to start a new IV.
I tell her this is just a test and when it’s over she will have a testimony!
On a lighter note you should see us changing her bag! We looked like the two stooges!
Till I blog again……
I’m currently in the hospital and it’s not fun. It’s so easy to get depressed up here. I’ve been here so much that nurses and other staff know me! No bueno. I talked with my doctor the other day and was informed that I will be staying in the hospital until about February 18 because I am unable to maintain while at home. At home for about 4-6 days I will be fine and hydrated but soon after my body begins to give out and my it’s too hard to keep up with my output and I get dehydrated. By the way, I’m still not a pro at this bag thing either, I’m so slow…anywho I asked the doctor about my reversal surgery so that I can actually poop like a “normal person”. His answer was “sooner than later”. Why must doctors be sooo vague sometimes?? Thus far, my nurses have been pretty dope buuuuut nothing beats being at home and working. Yes making money is fun! I went to work for one day and it took so much for me to just be there. I wasn’t ready physically nor mentally. I always seem to forget about that important thing pertaining to mental strength and stability. I know I put a smile on my face and laugh with my family and friends but truthfully….I’m hurting inside and I feel like a traitor because I’m being fake….
I’ve decided to feature a few guest bloggers on my blog to give their point of view of my journey. These individials will be very near and dear to my heart. Be on the lookout! I’m EXCITED!
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Okay, so you all might be wondering since my last post. Basically I have been in and out of the hospital post surgery and it seems like my doctors aren’t really sure what EXACTLY is wrong. However, what they do know is that I am depressed and my body is and mind is just overwhelmed. The feeling of being overwhelmed has kept me from writing because I haven’t had the mental and emotional capacity to do so. The amount of times I have been admitted and in the ER is bizarre to me and to be honest the other day I was thinking about just giving up on this fight. What if I said just “F*ck It”? How many of us know what it feels like to feel hopeless and the loss of power and control over YOUR body. It’s been tough for me. Now on the flip side, I have had amazing support from my family, friends, and medical staff. I’ve been hoping however to link up to more ostomates so that we can share our stories and support each other.
Now for an update about life with a temporary ostomy…it sucks. I initially thought I was mentally prepared for it and its not that it grosses me out but it just doesn’t make me feel beautiful. Yes I am now insecure and for goodness sake I keep having nasty leaks. I’ve been having so many issues that aren’t related to the surgery. The surgery itself was successful but something in me was triggered to tell me body to screw up even more. So I’ve had daily pain, nausea, and even vomiting. It hasn’t been nice. I mean I don’t “feel” sick but when it comes on it hurts like hell. Since my surgery my parents have been here to help me but my mom mainly stays with me. She watched me in the night when I sleep….weird lol.
I’ve learned something important..well many things but I’m just going to express one right now…Don’t give up. It feels so easy for me to just throw my hands up in the air and say just forget it. It feels so easy to say I don’t want to fight anymore. It feels so easy to just say “GOD I don’t trust your will”. However I don’t give up and I KEEP my trust in the LORD. If anything I’ve built a better relationship with Him. It has made me STRONGER.
I’ve finally gathered enough strength to start posting again. My surgery was on the 18th and since then I’ve felt like I was so out of it. Of course my surgery was defined as successful despite being in the operating room 5 hours longer than expected. Okay so I was prepared for this change but to actually be living with this physical change is a challenge. As it stands right now I’m feeling pretty good except for pain, soreness, and lack of appetite. I have a doctors appointment shortly to take the rod out of my stoma and this dang rod is quite annoying as far as changing my bag. So I guess you could say I’m quite excited right now…I have a series of posts coming so be on the lookout
So I’m feeling pretty good today with minor abdominal pain. I was taken off of Humira and it seems as though a lot of my symptoms are coming back. My doctor took me off so that they could make sure they took out everything that they needed to during the surgery. So anyway…this post is strictly dedicated to my sister…my twin sister. Listen here, being diagnosed with a chronic disease doesn’t just affect the individual but the families as well. I mean technically our families can grieve the loss of our health or the loss of power/control of our bodies. My sister lives in Texas and unfortunately won’t be able to come down for my surgery to see me until Christmas. I told her I was fine with it as long as she skyped all the time because I know that I will be very bored during my recovery. Now my sister doesn’t have Colitis just me however sometimes I wonder can she feel my pain and can she sense when I’m emotionally downhill. I mean we are twins right? After talking to my sister the other day I realized how actually she has taken the time out to research my surgery, the ostomy, and other helpful blogs. So what my sister doesn’t know if that I’m truly grateful that she has become familiar with the disease. I don’t have to feel alone when talking about my concerns following the surgery or before or even when I’m thinking of clever ways to conceal my bag. She’s never too busy to talk and is actually interested in those ostomy underwear. She’s realistic when facing this disease and isn’t in denial about it. So what my sister doesn’t know if that it means the world to me that she is the biggest support system I have. She’s my other half…literally. I don’t like to look weak and I certainly don’t like for my family and friends to be concerned about me. I don’t want others to worry about me. I don’t like when people ask me how I’m feeling because of course I smile and say, “I’m fine” and minimize my pain. Isn’t that what strong people do…even with tears in our eyes we manage to smile and say that we’re okay? Sometimes I think this is something my sister (or anyone) doesn’t know. Or maybe she does..What my sister doesn’t know is that I know that it’s hard for her to be away when I’m sick or having surgery but I know she has my back. Why am I saying these things?? Because what my sister doesn’t know if that even though she the farthest away she’s the closet one to me.
Alright so I went and did my pre-op today at the hospital. I kind of just left and went across the street for yet another appointment. They go over all your health history and instructions. So the nurse then goes over the surgery that I will be having and the name of the surgery has like 15 words in it! Now they werent even GRE words if you know what I mean (insert laugh here). OK so here it is folks…on the 18th I’m having a Laparoscopic Total Major Abdominal Colectomy and Protecmy with ..blah blah I don’t remember…j pouch something …reversal…GRE word…ileoanal anastomisis…something something… Alright so there it is loves…stay blessed! Oh and don’t worry I’ll explain it all later! 😛
*no dictionaries (just brain cells) were harmed in writing this post. I take no responsibility for misspelled words.