Some Call it a Miracle and Some Call it Strength
Posted by juliebernal | Filed under Cardiac Pacemaker/Ablation, Diabetes/Blood Sugar, Recovery & Coping, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Nov. 29, 2011
I tend to keep to myself when I’m at the doctor’s office. But for some reason every time I get lab work done, I always have at least a few people that end up talking to me. Maybe because I’m young and they wonder why I’m waiting for blood work. Maybe because everyone is so bored while waiting for their turn to be stuck. Maybe it is because I’m almost always smiling. Maybe it is the way the chairs are all lined up in a row. I’m not sure what it is, but I always seem to meet the nicest people while waiting for my turn. Today I went to the doctor’s office to have my three hour glucose test that I’m required to have every three months to check my A1c along with other blood work for a study that I’m a part of. My appointment was set for 9:30 am. I was fasting since 9 am the night before. It took forever to see the doctor. And then it took forever waiting to get my blood drawn.
By 11:45 am I got up and said, “Is it going to much longer? I need to either get started or I need to do it another day because my sugars are dropping and soon they are going to be too low.” 15 hours fasting for a diabetic is not a good idea, plus my blood sugars always drop really low by noon if I don’t eat plenty of carbs. They said it would only be five more minutes because the computers crashed. The lady next to me told me of her grand daughter who is also diabetic. I had told her that I had my pancreas removed along with a transplant. I watched her month drop and she just simply said, “You are a miracle!” She wanted to know more about it, so we talked some. She told me about her family. And it was nice talking with her, it calmed me and took my mind off of the fact that I had been waiting way too long. I started to find myself having trouble focusing in on the conversation and my mind started to feel blurry. So I checked my blood sugar…91. I started to get sweaty and shaky, then cold. Finally they called my name. They stuck me twice with no luck. My hands where cold and I was a bit pale. Then I started to cry, “I need to do this another day. My sugars are down too low now. I can’t wait any longer for someone else to try. I’m shaking too bad. I need to eat.” They gave me two juice boxes and some crackers. I checked my blood sugar levels again and it was at 45. In a matter of 10 minutes I went from 91 to 45. I always feel silly when I cry like that in front of people. But I had no control over my thoughts, my vision was blurry and I just felt so helpless. The kind lady who I had been talking with earlier was next to me getting her blood drawn, somehow it felt comforting to have her sitting there by my side. She said, “It’s okay, you don’t need to feel bad, you have been through so much.” Wow, she was right. It hit me. Yes, I have been through a lot.
I went home, ate, and spent the rest of the day feeling a bit sick. Curled in a ball, feeling like I had the flu – but without having the flu. What a disappointing day. I just managed to take two steps forward just the other day. And somehow I managed to wake up today to this – taking two steps back again? This sick feeling of overwhelming tiredness and a dull aching pain.
I was so proud of myself because I had four great days in a row. I thought things were looking up again. The past month has been a struggle. Mainly because of my heart. It will take time for my heart to adjust to my new heart rate and pacemaker. I’m happy with my heart rate staying above 60 but it has also been jumping all over the place. And it’s been going way too high at times. They say it takes time to adjust and we are working on getting it to where it should be. But I’ve been pretty limited to doing any kind of activity lately and I get tired easily. Along with all of that, I had been getting chest pain. Very bad chest pain and pain in my abdomen. Feels like a spasm and it takes my breath away. I think that the heart stuff tends to trigger the GI issues – nausea and pain. So, I had to start taking pain medication again. Almost had to go to the ER a few times last week, but luckily my medication helped enough. I had a few hard days here and there. But thankfully Thanksgiving was a great day and I even had three more nice days that followed that were I didn’t need any pain medication. I was all smiles.
But just as I was happy thinking that everything was finally getting better, I had a day like today. So upsetting. But, I’m doing fine now. My spirits are up. I know that healing takes time. I’m so used to setting deadlines for myself – goals, winning, being the best I can be…I forget sometimes that the body heals on its own time. It doesn’t matter how many times I tell myself that I will be well this day and that day, my body and heart does not follow my mind’s orders.
It’s really weird. For the most part, I don’t think about being ill. So sometimes it just shocks me when something happens. Others times I just think, “What else is new?” But I much rather spend time thinking about something else. Some days I forget that I don’t have a pancreas, or I look down and see my pacemaker scar. Wow, that’s so strange. I live for today and for tomorrow. I move on from the past. I’m not sure if it’s denial or if it’s something I just want to let go of. It’s hard for me. When is the past truly the past when I continue to deal with ongoing issues? I still have dreams about my surgeries. I still remember the crazy moments of feeling like I may die. But when I have a good day or spend time with friends and family, I find myself so surprised when when I get sick. It’s like I’m in shock that it could hit me while I’m trying to have fun. Or like today, I was disappointed that I got sick when I was at the doctors. I felt like I failed because I wasn’t able to complete my blood work test. As if it was something that I could have helped.
So today I’ve been thinking about my surgery, about my pacemaker, about my life really. This is who I am, where I’ve been. And a year ago I was in the hospital unable to have Thanksgiving with my family. I had gone 5 days without any food or nutrition – just water and IV. My family stood over my hospital bed praying for me to make it. I’ve never seen a doctor more concerned about the state that I was in. And I never felt closer to death. I knew I had a lot more living left to do and I fought the battle. A year ago I was almost dead…and this year I ate Thanksgiving with my family. I ate! I had a great, perfect day.
So what am I Thankful for? Everything! My life – some call it a miracle and some call it strength. I think it’s a little bit of both.
Tags: Blood Sugar Levels, Cardiac Pacemaker/Ablation, Recovery & Coping, Surgery
December 4th, 2011 at 12:42 am
HELLO JULIE, I JUST READ YOUR POST AND I MUST SAY YOUR WORDS ARE BEAUTIFUL. I AM GLAD TO HEAR THAT YOU ARE HAVING SOME GOOD DAYS,YOU EVEN SOUND BETTER. HANG IN THERE JULIE BETTER DAYS ARE COMMING. I AM STILL CONTROLING MY SPHINCTER OF ODDI DYSFUNCTION BUT ITS A BIG JOB, ONE SLIP UP AND I’M IN PAIN. YOUR FRIEND BOB
December 7th, 2011 at 11:03 am
Hi Julie,
Hang in there my friend. Thank you for sharing your struggle so honestly. It is so refreshing to hear someone go against the everything is great, I’m in control and the family is fine always. I know somehow your honesty will help others…especially me, as i am having the TP/AIP done next week Friday. I know I owe you a phone call (it sounds like you maybe havent felt much like chatting anyhow…so maybe its part of Gods time I havent been able to call yet) and I will call! My school finals are tonight (Wed) and then I will have time to take a deep breath and call you.
I hope you take it easy on yourself, and take the time you need to heal. You have a lot of folks pulling for you, including me! Talk to you soon!
ps…what time zone are you in?
December 8th, 2011 at 4:59 am
Hi Susan. I can’t believe your surgery is so close already. Wow! I’m so happy for you – as to hoping this will better your life in many ways. And at the same time want to say that I will be praying for you and I hope you are able to stay strong during surgery and recovery. You will be in my thoughts. I will be free tomorrow (Thursday) afternoon and evening if you would like to chat, or anytime you are free please feel free to call me. I am doing well and always up to talking. Hope your finals went well.
Talk soon.
Julie
December 15th, 2011 at 4:20 pm
Praying for you Susan for a successful surgery and a speedy recovery. Many thoughts to you and your family.
Julie B
December 25th, 2011 at 7:26 pm
Happy Holidays, Julie. Wishing you a very happy New Year.
Julie
December 27th, 2011 at 1:43 pm
Thanks Julie G. Wishing you happy holidays and a new year that will be filled with healing and a chance at a new life (without a pancreas).
Julie B.
January 5th, 2012 at 4:23 pm
Hi Julie:
I just read your post, please know that you are truely an inspiration of stength for many people. You will always be in my prayers and thoughts. I hope that you continue to have more days of feelings great and have less days of pain and frustration.
Just know, that you are truely an amazing person. You are not only a survivior, but a leader that helps guide others through your experiences.
Stay strong and safe! Happy and Healthy New Years to you and your family.
Kathy
January 10th, 2012 at 3:22 am
Thanks Kathy. Your words are so kind
Julie B.
February 20th, 2012 at 12:10 pm
Hi Julie, I have a qustion, after all the years of suffering do you wish you had the op earlier. I started my nightmare journey of Chronic Pancreatits over a year ago. They thought it was my gall bladder, had that out but things are far worse now than ever before. I’ve lost so much weight and didn’t need to. .Although it’s not been diagnosed I am on Creon and still in pain. Anyway back to my question. I read a report from one of the hospitals in America (I’m in the Uk)ithat it may be a better option for thoswe who are suffering from CP should consider TP/AIP at an earlier stage, so the damage is limited and the islets can be saved and transplanted. There is quite a good website, check it out, good info on nutrition and vitamins http://www.overcomingpancreatitis.com. you may have already come across it but although you had SOD , the nutrition info is very useful. At the moment I would like everything out the nausea and pain i can’t stand. Anyway i do hope you improve every day and you start to get really healthy and get back to your life.
February 20th, 2012 at 10:17 pm
Hi Vicky,
Oh, I’m so sorry you are suffering from CP. Well for me, it took some time to finally get diagnosed with CP. Same thing, they took the gallbladder out hoping it would help. It didn’t. Then was told it was SOD. After 4 years of many surgeries and tests, finally was told it was CP. Even then some doctors were trying to say it was recurrent acute pancreatitis (which to me is the same thing if it’s pancreatitis everyday). I would do everything the same. I had 3 out of the 9 markers for CP. So, I got my surgery early on in CP. But my health went downhill really fast within months before my surgery. I think if I had waited even 4 more months, I don’t think I would be here today. Yes, it’s better to do the TP/AIT at an earlier stage. It seems the longer living with CP, the higher risk of having colon problems (before and after surgery) and the more complications with GI issues. And better outcomes of islet count, as you said, happens when the pancreas isn’t too far gone yet. Plus, preventing pancreas cancer. I know someone who was getting ready to have the TP/AIT but then couldn’t because it turned out that there was cancer before she was even able to get the TP/AIT. My heart is breaking right now just thinking about it. But as far as your question, I’m very pleased with everything I did. I tried everything like taking the gallbladder and ERCP’s first. I tried to make it better. Then when there was nothing else, I went for the TP/AIT. I’m glad I had it done when I did. I feel that the TP/AIT is being improved everyday. I’m part of a study that is helping my islets survive. A year ago, I don’t think I would be doing as well as I am now because they weren’t doing the study back then. But when I found out I had CP, I didn’t wait. I made sure that I got in to talk to doctors about getting that sick pancreas out. Do they have any hospitals in the UK that are preforming the TP/AIT? I know a few others in the UK that may need it in the near future. Hope that you are able to regain a healthy weight. Nutrition and vitamins are the way to go. And don’t be afraid of getting a feeding tube if it gets to that point. It’s good that you are on a pancreatic enzyme too. It won’t help the pain but should help you digest some of your food. If you are in pain still, you may want to look at a medication to help control that. Pain control is very important for your body. I would love to hear more of your story if you would like to share. Many thoughts to you. And thank you for the kind words. I’ve been doing really well.
- Julie B.