Thursday, June 26, 2014

Days Like These

I’d planned on writing this post earlier this week, but have been so busy with my last week of school that I’m just getting to it. Side note, I am so glad to be done with school and ready to enjoy this summer! Anyway, last weekend was amazing. It’s difficult to have any kind of social life when you’re chronically ill. Making plans knowing there’s a high chance I’ll be sick and have to cancel is pretty depressing. Having to pack a backpack full of medical supplies just to step out of the house can be quite a burden at times. Finding outfits that don’t look ridiculous with my feeding tube hanging out is quite a challenge. Yet even with all the trials I face to simply get out of the house, days like last weekend remind me that it’s more than worth the effort.
Saturday I was able to get dressed up (I even wore my heels!) and go to a reception where I danced all night. I was able to catch up and laugh with people I haven’t had the chance to see in ages and it was so refreshing. Then Sunday I had the privilege of attending the second annual fundraising dinner for Gastroparesis and Dysautonomia hosted by a fellow GP fighter. She did such a wonderful job despite all the health setbacks she has faced recently, and was able to bring together chronic illness fighters from multiple states to give us a chance to raise money for research and to simply have the opportunity to share stories, tips, and hope. It was pretty surreal to not be the only person in the room with a backpack and feeding tube. It was also a nice change that no one looked at me funny while I ate applesauce for dinner instead of having what everyone else was eating haha.
Its days like these which help remind me that although bad days can outnumber good days, we have the option to not let the bad overshadow the good. Dues to being ill, I wasn't able to make it to the wedding, had to leave the reception early, and had a tough ride on the way home from the fundraising dinner, but taking the time to reflect on the good moments made it worth it. We have to personally make the decision to find ways to be happy, no matter how hard it is. Even if you can’t have a whole weekend, or even a whole day, actively search for just one moment of happiness and reflect on it throughout the day, and I bet you’ll find yourself smiling just a little more than usual.

Sunday, May 4, 2014

Tube Changes and a Mic-Key

A couple of weeks ago I had the dreaded experience of waking up to a leaking tube, and not just an open port cap. The J portion of my tube had a hole that no amount of tape was able to seal, so I decided it’d be best to call my surgeon. Turns out he was on vacation, but Interventional Radiology (I.R.) was great and fit me in with a different surgeon that afternoon. Since this was not a planned procedure and I had eaten that morning, it was not safe for me to be fully sedated which made me very nervous. Throw in a sudden allergic reaction to Zofran (my daily anti-nausea medication which I can no longer use safely), and I was just a ball of tears and stress. Thankfully, my mother was able to calm me down and by the time they took me back I was feeling a bit more confident.

Although I couldn't be fully sedated, I was told I would receive light sedation using Fentanyl and assumed I wouldn’t remember a thing. Boy was I wrong! The nurse gave me the Fentanyl as promised and I was suddenly dizzy, nauseated, and feeling generally unwell, but patiently waited to drift off to sleep. Instead, with many prayers for strength and calmness, I endured shots of Lidocaine into my tube site to combat the pain, and the forceful pulling and pushing as the surgeon removed my faulty tube and replaced it with a new one. Needless to say, I was a bit overwhelmed but overall it was not nearly as bad as I had imagined. The Lidocaine made the procedure almost painless, prayer kept me calm when I wanted nothing more than to hop off that table and go running for the hills, and the trendy music playing lightly over the speakers was just the distraction I needed.

When the procedure was over I was a little upset to have gone through all of that for the same PEG/PEJ tube when what I really wanted was a Mic-Key (low profile, more discreet tube), but my size was on back order so that wasn’t an option. I headed home hoping to get some rest but was very distressed when I realized the G port on my tube was leaking because of a faulty cap….REALLY?!? Yeah, I was not a happy camper. The next business day I called I.R. and we decided to try fitting me with a new cap to hold off until the Mic-Key tube arrived. They ended up receiving it that day and the next morning I was back at the hospital. Since the Fentanyl hadn’t helped at all and I was hoping to get out of the hospital as soon as possible, I decided to pass on all sedation and choose only to use Lidocaine shots for the pain during my second tube change. The procedure went smoothly and I am the proud new owner of a G/J Mic-key Button that I love!

Although that was a rather stressful and busy few days, my amazing family was by my side every step of the way and I thank God every day for blessing me with such a great support system. They’ve seen my good, my bad, and my absolutely crazy side and love me anyway. No matter how often this battle knocks me down, I know I can always get back up to fight another day with a hand like theirs waiting to pick me up.

Local reaction to IV Zofran.
Happened very suddenly so I was happy
to be in the hospital at the time and I received
prompt care.

Old PEG/PEJ Tube with one
of my favorite Tube Pads=)
Brand new G/J Mic-Key Tube
Just in time for Spring and Summer!

Thursday, March 27, 2014

I'm Alive!

I know it’s been a long time since my last blog post and I apologize for that, I’ve just had so much going on physically and mentally that it got pushed to the back burner for a little bit. Sometimes taking a little “Me Time” is just what the doctor ordered. So for a quick update I just wanted to let everyone know that I’ve been recovering very well from my procedure and so far this tube has been waaaay more comfortable then my last feeding tube.
Honestly, the recover was not the easiest and dealing mentally with having this tube in me was tough. I remember looking down at my tube quite a few times and needing all my strength to not rip it out because I couldn’t believe I had let them do this to me. I wished that I could go back in time and cancel the surgery. I wanted the pain to stop and to be normal again. It was tough, but my family was there every step of the way and each day was a little better than the day before. I’m happy about it now, and that just goes to remind me that no matter how hard things may be it can turn around and no matter what life goes on. Sometimes all you can do is take life one day at a time and that’s ok.


Saturday, February 15, 2014

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.

Monday, February 10, 2014

Tools of the Trade Tubie Style

I have officially been a Tubie for two months! There have been plenty of ups and downs along the way, but the fact that my NJ Tube is keeping me alive makes it all worth it. This week is the third annual Feeding Tube Awareness Week so I figured it's the perfect occasion to share a few tips and tricks I've found to keep this feeding tube as comfortable as possible.

1) Buy a humidifier- A dry tube rubbing against a dry nasal cavity can be painful! Keeping the air moist helps keep nasal passages from drying out too much and ease the pain a bit.

2) Saline spray and saline gel- The spray helps moisturizer deep in the nose and the gel can be applied in the nostril around the tube to prevent any rubbing. I was getting a lot of nose bleeds and this helped a bit. PS. DO NOT USE PETROLEUM JELLY ON YOUR FEEDING TUBE!! I just happened to mention to my nurse that I was using Vaseline in my nose (before I got the saline gel) and she informed me that it will break down the plastic used to make feeding tubes.

3) Sip on drinks or suck on candies- This helps keep your throat from drying out leading to less throat pain and feeling gaggy from the tube tugging in your throat.

4) Buy some make-up remover- I had an awful time trying to get leftover tape residue off my face from using silk tape to keep my tube in place. One day I decided to try my make-up remover and it works wonders!

5) Find a good tape- Having a good tape is so important because there have been a few times where I've accidentally snagged my tube and it was the only thing preventing it from being ripped out. I've tried silk tape because that is what they had in the hospital, but beside the awful stickiness it left behind I also had to change it multiple times a day because it would never sick well for me. Tegaderm has been pretty great and no matter how long I leave it on there's almost no sticky residue left behind. I've also tried Hypafix and love it. It does leave a bit of residue, but keeps my tube in place so well that it's worth it.

6) A good pill crusher- Feeding tubes are often very tiny and clog easily, so if you will need to take medications through your tube and can't find it in liquid form it needs to be COMPLETELY crushed into a powder and dissolved in water. It's much better to take the time to crush your pill well than to end up in the ER getting it replaced.

That's all for now, but I will update with any other tips I find and feel free to leave any suggestions of your own. =)

Saturday, February 1, 2014

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.)