Life is short…

There seems to be a lot of sorrow going on in my inner and outer circle of friends right now. In the last few months, I have seen (either in person or over Facebook) so many people dealing with some sort of major suffering in their lives; from diagnoses of diseases, to car accidents, to heart attacks, etc., which have often resulted in losing someone they love. The last week or so has been the worst, and a lot of devastating things have happened to people that I care about.


Hearing about all these tragic circumstances have really reminded me just how precious life really is. People say this time and time again, but it is really is so important to live your life to the fullest. Life is so unpredictable and things can change at any moment. It is so important to go after your goals, to be the person you want to be, to do the things you want to do. It is so important to live the life you have dreamed about, and if you don’t like something, change it! Love with all of your heart, mend broken friendships, and be a better person, friend, partner, parent, etc.

Thinking about all the different things I am seeing people struggling with right now has really brought me back to my experience with GBS. It’s been 4 years now since that time in my life and I almost can’t believe it even happened; it seems so long ago. But it did happen and I can’t believe how much it did change me. Reading through my past blog posts really shows me just how much I got out of my experience with GBS and I really hope that when others read through them, especially those going through a hard time, they get something out of it as well. 

Here are a few passages from past blog posts that I wanted to repost; some things that I have written in the past that really ring true to me, and might for those people experiencing pain as well:


“I think it is very important (for everyone) to take a look at the situations we are put into; at the struggles that we are faced with, and keep moving forward. Yes, of course there are going to be hard days, but what will get you through those days, is trusting that you will make it through them, and trusting that everything happens for a reason.

 

I constantly get asked how I am coping and how I manage to stay so positive through all of this, and the key to my happiness, is accepting where I am in my life, and making the best of it every day. And that doesn’t just apply to my situation, it applies to any situation. Life isn’t always perfect, but as I have learned from GBS, it is most definitely worth it.


I realize, and I hope others realize that even when things are going so terrible you almost can’t breathe; it won’t always be like this. Things will get better. And not only will you get through it, you will be stronger because of it. You just have to take each day, one obstacle at a time. 


Because of my experience with GBS – knowing everything that I made it through in the past- I have been able to maintain a very positive outlook in the challenges I am faced with, which really helps me to live my life to the fullest.


And you don’t have to do what I did – wait until you get some terrible disease to start living like this. Now is the time to be that amazing person you have always wanted to be. Now is the time to be happy. I had my entire life taken away from me for months, and then…I was given it all back. You can’t imagine what that feels like – to think your life is over, and then one day you realize that it isn’t. That is a feeling I wish you could all experience, because it gives you a sense of appreciation like no other. And one day I hope you get the chance, to live like you were dying.”

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6 Responses to Life is short…

  1. lovinlife38 says:

    I just watched your video again for the 3rd time in 3 years. I was diagnosed with CIDP in January 2013. I thought my life was over, I was told by my neurologist that there is no cure, only medications and treatments for the rest of my life. I would pray everyday for God to just take my life so I wouldn’t have to live in this misery and be dependent on a wheelchair or someone else to take care of me. I developed drop foot, my hands were useless, I couldn’t straighten my fingers, I had no balance, I would trip and fall all the time and was always in pain due to my nerves. I reached out on Facebook to some CIDP groups and one day a lady mentioned HSCT. I had no clue what it was, but she made it sound like a miracle. She shared her blog with me and I saw that chemo was involved. That scared me and I put the thought in the back of my head. I realized one day that I was not going to get better unless I tried and made an effort. I asked her if she would do it all over again if need be and she said “In a Heartbeat.” I figured it couldnt be that bad then so, I reached out to Dr. Burt in Chicago who is doing a trial/study with stem cell transplants. I was called to come to Chicago for an evaluation and was told I was a great candidate. A month later, I flew back to Chicago for pretesting and passed everything. No other underlying issues, I was healthy except for CIDP. 3 months later I flew back out to start my journey with HSCT. A round of chemo and 5 days later I had to inject myself with a drug to mass produce new stem cells to come out of my bones, that was a very painful process, but worth every minute of it. On day 6 of the shots I was admitted for the day to have my stem cells harvested. The goal, to collect at least 2 million stem cells. After 6 hours of harvesting, we collected 5.5 million. Two days later I flew home to wait for the last part of the journey and thats when my hair fell out. I was devastated, but took the power into my own hands and shaved my head completely bald. I then flew back to Chicago after 11 days ot be admitted back into the hospital for 2 1/2 weeks. The first 5 days consisted of chemo, rATG, steroids and other fluids and I felt like death. March 5, 2014 I had my stem cells transplanted back into me and then it was 10 days of waiting for my white blood counts, platelets and red blood counts to come back up to a safe level. At 5 months post transplant I was able to walk again unassisted, 6 months post transplant I was able to get back on my bike and ride again, 7 months post transplant I was able to run again and today, 20 months post transplant I am on top of the world, my CIDP is in remission, completely symptom free, no longer on any medications or treatments and grateful for everything I have been given, the good and the bad. I thank God everyday for not granting my wish of taking me from this earth. I know what it feels like to be near death, not be able to take care of myself and be given a second chance at living again. In the process of my recovery, I too lost my relationship of 16 years. He was by my side throughout my illness and transplant and once I was better, we just took different paths in how we see life. I am so happy to hear that you have gotten so involved in the GBS/CIDP foundation and spreading the word about this horrible disease. You are in inspiration and thank you for sharing your video with the world. -Stacey Dematos- CIDP/HSCT Survivor

  2. Leanne says:

    Holly,
    Words cannot describe the emotional I went through whilst watching your video, as a mother of two young children I cannot comprehend the overnight changes you and your family went through. I have nothing but admiration for you and you have made me think about the way I look at life, I want to make a postitive change for myself and my family, your determination and strength is astonishing. So I thank you for being the true reminder that life is too short.
    I will cherish each moment thanks to you and your powerful video.
    XoXo

  3. Jean says:

    I am a survivor of GBS, At age 52 in 1998 I was luckily diagnosed within 24 hours of my first symptoms. I lived in a small town in Northern California, there wasn’t a neurologist in the area, so thank god there was the internet. From Ukiah CA I was sent to University of California in San Francisco. There I received a brand new treatment that had only been used 1 or 2 times before me. They gave me a phony disease, causing my white corpuscles to react the correct way. This IV treatment lasted for 5 days. It kept the disease from progressing and virtually stopped the numbing in it’s tracks. All these years later, I still have numb spots on the bottoms of my feet, and a few other odd things that never went away, but I am living my happier after.

  4. Maddy says:

    You are amazing! I have just watched the video of your journey in awe! You should be an inspiration to everyone!

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