Can't Keep Me Down

     This Monday is going to be a big day for me as I'm scheduled to have a new long-term feeding tube placed. It's called a GJ (Gastrostomy-Jejunostomy) Tube. For those who don't know, I currently have a NJ (Nasal Jejunal) feeding tube that goes through my nose, down my throat, past my stomach and into a portion of my intestines to deliver a special formula that gives me the nutrition I need to live but can't take in orally. This new tube will have the same function, but will be placed directly through my abdomen wall with a portion of the tube in my stomach and the rest continuing into my intestines.

 

 



      I'm not going to lie, this is all a bit scary and overwhelming. I went for a consult with my surgeon earlier this week and when he pulled the tube out to show me what it would look like I couldn't help crying because at that moment it became so REAL. "I'm going to have that TUBE in MY belly." It's hard to acknowledge some days that this is really my life. Growing up I had so many plans for my life, and this was never one of them. I've realized though that sometimes it's ok to allow myself to just be sad, it's staying there that causes a problem so here's my list of positives about my situation to help put all those fears and sadness on the shelf for now:

 

1) No more sore throat and nose bleeds.

 

2) While I'm in the hospital I can order all the free Schweppes ginger ale and applesauce as my tummy can handle! I mean come on, who doesn't like free stuff.

 

3) I'll get to spend my recovery watching movies and being waited on hand and foot. Just call me Princess Simon'e =)

 

4) While surfing the internet yesterday I saw a list of positive things about feeding tubes and one of them was that after this surgery I will have two "belly buttons" because some of the tubes are called buttons. Not many people can say that hahaha.

 

5) I have a surgeon that I love and who has taken every step he can to put me at ease and keep me comfortable during my hospital stay. Finding doctors who have my best interest at heart and go out of their way to give the best treatment hasn't been quick or easy, but each disappointing doctor has shown me what I don't want and lead me to a better replacement.

 

6) This tube will help keep me alive. I think this alone makes getting my new tube totally worth it. My life may not be all that I planned yet, but it's still worth living for and every day I get to spend with my family and friends is a blessing.

 

 

(Both picture found through Google. First picture is from: http://www.uofmchildrenshospital.org/fv/groups/public/documents/images/115616.jpg. Second picture is from: http://www.na.kccustomerportal.com/documents/upload/application/2812/learning%20center/hierarchy%20description/dh_transgastric_c18246_06%2025%202010%207%2014%2026.jpg.)

Sharing The Spotlight

I’ve never been the type to enjoy the spotlight. Growing up, I went to a school that hosted two school wide theatrical performances each year and I loved being involved in the behind the scene productions. Designing and making props, making sure everyone had their costumes and made it out on time, coordinating the sound and timing of the performances, I just loved it all. I usually had a part or two on the stage also, but the bright lights and nervous jitters just weren’t my cup of tea. Yet, here I am in the spotlight again, although this time with the bright lights of one exam table after another and the jitters of waiting for appointments, test results and future procedures.

As frustrating and scary as being chronically ill is, working hard to look for the positives in a trying experience can teach you a lot. Personally I’m learning to ask for help when I need it, and cultivating the humility to accept that help even on the days I feel I don’t need it (because if I'm perfectly honest with myself I can ALWAYS benefit from a little extra help). My faith and endurance have surpassed any level I’ve ever imagined and it gives me the strength to push through the tough times. I’m also working hard to find productive ways to pass time. Sitting around feeling sick sucks, so keeping my mind active helps me not to focus so much on how I’m feeling physically or my fears of the future.

Being chronically ill also puts you in the “spotlight” of other people’s minds, especially your family’s. “How are you feeling?” “Is there anything I can do for you?” “What’s your pain level today?” “When’s your next doctor appointment?” “Is it time to refill your prescriptions?” I am so grateful to have a family that willing and lovingly tends to me making sure I’m as comfortable as possible, but I find myself often wishing there was more I could do for them. I’m not working so I can’t help with the bills, especially my never ending medical bills. I’m not allowed to drive again yet so I can’t run errands, take myself to the doctor, or help pick my little brother up school. I quickly realized focusing on all the things I couldn’t do was only good for making myself feel pretty useless and decided to get off the pity potty and find things I could do.

For example, now that I’m gaining more energy I can help with the chores. Washing towels, making beds, and emptying the dishwasher may seem like little things, but I saw a quote recently on Instagram that said “Little things add up.” When my family is coming home from a long day of work or school, it’s nice that they can relax and have one less thing to worry about. I’ve also been working hard to put the spotlight on them. “How was your day?” “How are you feeling today?” “Is there anything I can help you with?” Family and friends of people who are ill spend so much effort taking care of that person that it’s often a great way to return the favor by simply showing interest in them and working hard to support their goals. That could mean being their sounding board for new ideas, helping manage their to-do list to keep them organized, or making breakfast or lunch so they can get out of the house on time. Again, the little task truly do add up to save time for them and to show how much you care. We Spoonies may not always be able to do much, but using our energy to support those who support us is never a waste of spoons. (See “Hi, My Name’s Simon'e and I’m A Spoonie” to learn about the Spoon Theory.)

A Dose of Love and Support...Just What the Doctor Ordered

     I forgot. No, that's not right. I was way past forgetting. I didn't know. I didn't know that I could ever smile a genuine smile again. I didn't know the joy I could feel from busting a move to my favorite song. I didn't know what it meant to complete a coherent thought and have a conversation. I didn't know there was life outside of my own home. My heart was beating, my lungs were taking in oxygen, but my mind was dead to the world. By the time I made it to the emergency room for the umpteenth time, my poor body was so dehydrated and malnourished I could barely drag myself inside. It blows my mind that if it hadn't been for my amazing family and doctor stepping up and saying that I needed more than anti-nausea medications and fluids that I might have been sent home, again, to continue suffering. I'm so grateful for the people in my life who were willing to take over my care when I didn't have the strength to do it because they helped saved me.
     My first night in the hospital was so scary because I finally realized how far gone my body was. I weighed 76 pounds and couldn't maintain safe vitals without medical intervention. My blood pressure stayed so low that I required bolus (or large amounts) of saline fluids just to keep it at acceptable levels. There were nurses coming in and out of my room all night but with my sister sleeping by my side and my mom sleeping in the chair next to me, I was able to make it through. The next challenge tackled was my blood sugar. Since I was unable to take in much food by mouth I was always dizzy and weak so spent a lot of time on "fall watch". I felt like the most annoying patient having to page the nurse to walk with me the ten steps to the restroom every time I needed to go, which is about every 45-60 minutes when you're on a bolus I.V. drip!
     Early one morning after a relaxing hot shower, fresh jammies, and a comfy new I.V site I was ready to settle in to a good movie when the nurse came in to check my blood sugar and it was in the 50's. For those who don't know, that's not so great. The normal range is about 80-120, so they gave me four glucose tablets (which are delicious by the way) and took it again. My blood sugar had dipped even lower to 44. At the time I didn't realize this was such a big deal since managing blood sugars was new to me, but the number was blinking in red and that was the first thing that alerted me. When my nurse walked in with other nurses for help and guidance, I was a bit freaked. They said they were just going to give me a bolus dose of Dextrose fluid (really concentrated sugar water) in my IV. Initially I was happy that they could solve the problem without involving my stomach since too much sugar at once is no bueno for my tummy, but because the Dextrose is super thick like honey it just blew my vein open which was extremely painful. The IV technician blew three more veins before getting another access site and we tried the Dextrose again. Thankfully it went a lot smoother and my blood sugar was stabilized for the moment.
     My biggest challenge of this hospital stay was my feeding tube. This was a decision that was hard to make, but truly necessary to save my life. About five days into my stay I had a nasojejunal feeding tube placed which is a thin flexible tube that travels through my nose, down my throat, past my stomach and ends in my jejunum (a portion of the small intestines). This type of tube bypasses my stomach to give my body the nutrients that it needs without causing all of the symptoms I get from eating food. My hope is to gain some weight and get my body healthy while I work closely with my team of doctors to find a plan of treatment that will get my stomach functioning to a degree where I can maintain my health and weight by eating orally.
    It's taken some time to begin noticing the effects of having a nourished body, but I've slowly been feeling myself return. Although I still struggle with my Gastroparesis symptoms daily, I smile. I sing. I dance. I crave life! I look forward to the day I can have the energy to hang out again and even...I can't believe I'm saying this...get a job. I've learned so many lessons along this journey and felt my faith grow exponentially.  I want to send out a huge thanks to everyone who visited, called, sent cards and gifts, supported and cared for my family, shared scriptures and encouraging words, and just sat with me when that was all I could give back. I loved when the nurses would walk into my room and comment on how cheery my room was with all of the cards on the wall, balloons with their get well messages, and my bed full of stuffed animals keeping me company. Having so much love and support truly kept me going, and I know it will continue to help me move forward one day at a time to reach my goals.


Post NJ placement





Feeling much better after a few weeks of NJ feedings!

Choosing Life

     Your body needs energy to survive and food provides your body with energy, so logically everyone needs to eat food to survive. Enter the eating disordered mind: FOOD IS THE ENEMY AND I DON'T NEED OR WANT IT! Let me try to explain.

     Growing up I've always had a fear of vomit. I can remember one specific episode when I was around eight that I was vomiting and just thought I was going to die. Obviously I didn't, but that didn't stop the fear from forming. Any time I was around someone who even mentioned feeling nauseated I'd start hyperventilating and shaking all over, it was a physical reaction I had no control over because the fear was that strong. So I'm sure you can imagine that being diagnosed with an illness that among many things can cause chronic nausea and vomiting was my worse nightmare come true. The day my GI doctor very bluntly told me I had Gastroparesis I cried and cried while he sat there rambling on and finally stopped to ask "Does this news upset you?" Yeah, I didn't continue seeing him for very long.

     He sent me home with a crushed spirit and a sample meal plan that didn't work at all. Before I was officially diagnosed, I dealt with the symptoms as best I could when my GP would flare really bad and tried my hardest to eat through the "normal" level of daily nausea and bloating. I lost a decent amount of weight but nothing to be overly concerned about. Once I learned about the GP friendly diet though (low fat and fiber, avoid indigestible foods like popcorn), it was like a switch was flipped in my head. Instead of viewing the diet as a way to manage my symptoms, I was looking for it to RESOLVE my symptoms and when it didn't I moved on to NO fat and fiber. I cut out one food after another until I was down to a couple "safe foods." That may be ok during a flare, but to stick to that long term is not healthy. When even those foods caused symptoms I cut my portions down to just a few bites every few hours, just enough food to stop my hunger pains or prevent myself from passing out. I wanted so desperately to feel better that I was willing to completely cut out what in my eyes caused all my suffering, food.

     At the time, I thought this was just the normal route of any person with GP because of all the horror stories I had read online. In my search for relief I had read story after story of people with GP who couldn't eat or work or function and I assumed that was what would become of me as well. It's true that for many people with GP it truly can be disabling, but doctor after doctor told me my case was mild and could be managed if I tried x, y, and z. I'd try their suggestions and still experience flares so assumed they must be wrong since I was still suffering because I wanted to be cured not managed. Instead of enjoying the good days and learning to manage the bad, I let the bad overshadow the good and they slowly began to take over. All I could do was sit at home and despise food because of how it made me feel. I would literally put food in my mouth and couldn't swallow it because I could only think of how it would make me feel in the short term rather than working to find ways to MINIMIZE my symptoms while still nourishing my body.

     It took a long time for me to be able to step back and see that although I had a legitimate health problem, it had somehow spiraled into something that I had no control over and needed help to recover from. It seems pretty common for people with GP to develop problems and fears toward food and I remember reading early in my diagnoses about seeking treatment EARLY for such problems and wish I had really taken that to heart and done so. I know many people may look at me and wonder how I can be afraid of food, but it's just like any other type of negative reinforcement I guess. Take those invisible fences for example. You put the zapper on a dogs collar and place those orange flags where his border is. Over time, he'll realize "Hey, I get to close to the flying thing and get a zap. I should probably avoid it." Well, I eat food and very often get negative symptoms. The only difference is that as much as I would love to never have to eat again, food is something I just can't avoid. I remember my therapist telling me "Even if you do throw up once every twenty five times that you eat, so what." In my mind it had never been that simple, but I was willing to try and make it that simple.

     My journey has been long and the end is still far off, but I'm ready to get off the side line and back into the race. Some days I look back and wonder whether my GP got worse or if my lack of nutrition and eating caused an increase in my symptoms, but I've been told that for some people, especially those like myself with Idiopathic Gastroparesis (the cause is unknown), over time the body can heal and GP will resolve on it's own so I'm hopeful that by giving my body the love and nourishment that it needs there is a chance I will one day be rid of this trial. Even if that is not the case, I hope to over come my fear of food and learn to manage my GP and get back to living. Just because life may be hard doesn't mean you can't enjoy it. I have confidence that through my faith and the support of my family and friends I can succeed and look forward to sharing my journey with you.

Hi, My Name's Simon'e and I'm A Spoonie.

     Having Gastroparesis is...interesting. It's considered an invisible illness because the symptoms can't be seen just looking at me and this fact has it's pros and cons. For example, on a good day I can pretend I'm normal. I can go out with my friends and not have people staring or judging me. People who don't know me or my story don't treat me weird or ask a bajillion questions. Sometimes it's nice to forget about my pain and daily struggles even if it's just for a little while. On a bad day though, my main symptoms may be invisible to most, but the trickle down effects every aspect of my life. There are times that I'm hardly able to eat for days causing my body to be weak and my mind to move slow. It's like trying to swim in a pool full of peanut butter and absolutely exhausting.

     So I'm sure you can imagine that on my good days I used to try to take full advantage and do all that I could, but that's where this Spoonie thing comes into play. As much as I want to do all of the things that I used to be able to do, my "spoons" are limited. The Spoon Theory was accidentally created by a woman who was chronically ill and asked by a close friend "what's it like?" She grabbed a bunch of spoons and handed them to her friend. She went on to explain that most people start the day with an unlimited amount of spoons while people who are chronically ill start their days with a limited amount, and it varies from day to day. EVERYTHING that we do in a day must be carefully thought out in advance because even the simplest task can use a spoon or two and when you're starting the day with only ten for example, they can go pretty fast.

     Before I read about The Spoon Theory, I had trouble accepting this as my new reality. I'd work myself until I was exhausted trying to live my life like I used to and then spend the next two to three days worn out. When my family would tell me to take it slow and offer assistance, I'd proudly refuse. I'd never needed the help before and in my mind I was the same person I had always been, why did they think I suddenly needed help all the time? After learning about it though, I was finally able to take a step back and realize that accepting my new Spoonie status didn't have to me that I liked it, and I may do less but I'm not useless. I've learned to do the best that I can at a slower pace than I used to and that my family is more than happy and willing to help me when I need it. On the way home from my last vacation, my family and I where stuck in an airport for three days and they pushed me around that airport on wheel chairs and luggage carts the whole time and as tired as they were, they never complained or made me feel bad about it. If you ask me that's some real love right there=)

     Trying to live at my new "normal" is still a daily struggle that some days I win and some days I lose, but each day I learn. I'm learning to be patient with myself and others, to speak up, and to appreciate the small accomplishments in each day. Sometimes it's the little things, like checking off a box on your to-do list or a small act of kindness, that can really keep you going through the tough times.

Give In, But Never Give Up

     Some days I give in. I give into the fear, I give into the exhaustion, I give into the anger, and for the longest I saw this as a failure on my part. I believed that I should be strong enough to rise above negative feelings and felt that I just needed to toughen up. I rationalized that there are so many people who have a life worse than mine and still manage to function and be productive. I envied those that could put a smile on even when everything that could possibly go wrong had.

     I worked so hard to force my feelings into a place where I wouldn't have to deal with them, but that didn't make them disappear. Allowing my past bad experiences and feelings to build up was like running a marathon with one hundred pound weights on my ankles and expecting to win. Once I finally decided to deal with my emotions rather than ignore them, I was so much happier! True, dealing with emotions are not always pleasant or easy, but it's worth the effort in the long run. Everyone faces trials in their life, but the way you deal with it makes a world of difference in the effect that it will make in your life.

     A few weeks ago, I was sitting in one of my school's counselor offices filling out the paper work for my Associates Degree, and looked up to see a sign on the shelf that said "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." I sat there reflecting on all that I had been through in the past year to be sitting where I was in the moment, happy and feeling the best health wise that I'd felt in quiet some time.

     At the age of twenty, I had to quit working. I no longer had the energy to continue at my fast paced waitressing job, and although there had been plenty of times in the past that I'd wished I didn't have to work, I never thought it'd be because I couldn't. I had to drop multiple classes when I was sick so often that I missed more classes than I attended. Thankfully, some of my teachers were very understanding and worked with me so that I didn't have to drop all of them and was able to graduate on schedule. At one point, I was mostly house bound because I barely had the energy to walk from the den to the kitchen, not to mention just the idea of riding in a car sent my stomach spinning. After months of medical testing locally, I faced a trip to the Mayo Clinic for a very rough week of testing that not only tested my physical body, but my mental strength as well.

     Yet here I am, fighting. Every day with GP is a battle, and yes some days I give in, but I never give up. I am beyond grateful to have so many people in my life who love and support me through the good days and the bad. On those days when I do give in and feel that I just can't fight, I know they've got my back and will fight for me until I'm strong enough to get back up. They help me "dance in the rain" when I'm feeling terrible by doing everything they can to make me comfortable and bring a smile to my face. They help me "dance in the rain" by sitting and watching movies with me when I have the energy to do nothing else. Most of all, they help me "dance in the rain" by loving me unconditionally and letting me know that even when the best that I can give is 20%, it will always be enough for them. So for all you GP fighters and people facing the various trials of life, find those people, or reasons, to help you "dance in the rain" and never give up.

Back to Normalcy!

"You never know how strong you are until being strong is your only option." -Unknown.

     Now, I know most people who come across this blog are asking themselves gastroWHAT?? You read right, GASTROPARESIS. Simply put, Gastroparesis is a paralysis of the muscles of the stomach. It can cause some pretty frustrating and debilitating symptoms such as nausea, vomiting, bloating, constipation, abdominal pain, weight loss, and even malnutrition. It's mostly compared to having a stomach virus 24/7, and I would definitely second that description.
     Because there is no cure and the few treatment options that are available are generally ineffective, my initial reaction to this diagnosis was to sit around the house, nauseas and depressed. I eventually decided the best way to deal with the nausea was to stop eating and began losing weight rapidly. My health spiraled downward for quite some time, and I kept waiting for any doctor to find a way to fix me and give me my life back. I finally realized that although having Gastroparesis sucks, there was so many worse things that could have happened!
     Yes, I have Gastroparesis, but it's not nearly as bad as it could be. My stomach is slow, but it still works. Sure eating makes me nauseas, but so does not eating. If I'm going to be sick anyway, might as well enjoy some food! Although my diet is still very limited, it is definitely a work in progress and I'm confident that with trial and error I will find a balance that works for me. I've decided that not only do I need to focus on my eating and nutrition, I need to focus on my whole self and that is where this blog comes in.
     Me and My GP is like a life raft that serves two purposes. One, to help me document my journey back to normalcy. Although I have Gastroparesis, I'm still the same person that I was before and REFUSE to let this condition dictate what I will do with my life. So to get back to enjoying all the hobbies that I use to love, I will be writing lots of post about things such as arts and crafts projects, natural/DIY beauty remedies, drawing, cooking, and something new that I plan to try this spring and summer, gardening. Basically whatever I can do to stay occupied and keep my mind off of my physical symptoms will pop up here.
     My second reason for this blog is to hopefully help others who are struggling with GP and the effects that it can have in daily living. Eventually I'll get around to posting my whole story, but for now I want to focus on the present and how I'm learning to conquer this condition and be happy. (Now, I'm not a doctor so any advice that I give is based solely off of my own experiences and anyone wanting to try them should definitely check with their doctor first.) My goal is to show people that not only can you live with a chronic illness, you can actually have a life!