The Health Activist’s Writers Month Challenge – Day 23 Technology

Write about how your life would change if there was no social media.

I kind of touched on this is some of the other posts that I have written. What would I do, or better yet have done, if there were no social media?

No social media. That means no Facebook, no Twitter, no Instagram, no Pinterest…etc. That would be almost no interaction with other people with my disease. Well, for most of my diseased life, I didn’t have any social media. I grew up and was diagnosed in the 80’s. There was no internet. Computers were still in their infancy. And I think by now you know how I dealt with my disease. I ignored it. I didn’t know anyone else with IBD. I didn’t talk to anyone about my disease. I just lived day to day ignorant of what my disease was all about.

In all honesty, I haven’t been on social networks for that long. I have only been on Facebook for maybe 5 years…Twitter for a little less. Since I have had my disease for about 25 years, social media has played a small part overall in my life. However, it has made a major impact. It has helped me come to terms with what I have. I have found an outlet to help speak my mind and deal with issues.

Social media has really helped me in one way. It helped me get the courage to start this blog. It was only after talking to some people that I decided to do this. I would never have met them without social media. It all started with YouTube. That is where I saw videos of inspiration. I then went to Facebook to talk to these inspirational people. Without those two sites, I would still be alone with my disease.

Social media is also allowing me to help others. One of my main goals now is to help others so they don’t feel alone with their disease….like I did. Without social media, I probably wouldn’t be successful at it. I could still write a blog but not many people would know about it or read it.

Our disease is often overlooked. It doesn’t get the best research. It doesn’t have tons of money thrown at it. Many people don’t know what IBD is. Social media is helping to change all that. Us IBD Warriors are now coming together and spreading the word. Thanks to social media, we have a voice now and maybe one day a cure.

The Health Activist’s Writers Month Challenge – Day 11 Favorites

Apr11

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I can remember being a kid growing up in the 1980’s. We would spend the day outside playing with our friends and having fun. After school we would come home and actually do homework. If we behaved we got to watch about an hour or two of television before going to bed. Things were simple and fun.

Now, I can’t imagine not having a computer and on top of that, not having social media. After I boot up my computer and checking emails, the first sites I go to are social media. If I have a question or problem, I no longer Google them, but go to a group online and ask away.

But what is my favorite? Honestly I don’t know. I spend most of my time when I am home on Facebook. I have met many people on there and belong to a number of groups…some IBD related, some not. I was thinking of mentioning some of the groups but then I realized that they are closed groups so the people running them might not want me to mention them. So I won’t. But if you have IBD, just do a search and you will find a lot of groups that deal with IBD. I have met so many great people from these groups and they really have helped me to deal with my disease. It is the one thing that was always missing from my life…meeting people with my disease.

Another great thing about Facebook is that it is Real Time. You can chat with people instantly. Not only have I met some great people, but I have talked with them one to one and gotten to know them better. I have gotten to speak to some of my IBD idols and not only have they helped me out but I have been able to help them out also. We can be there to be a pick me up for each other when needed.

Besides Facebook, I use Twitter a lot. Again, I have been lucky to meet a lot of people with IBD with this site. Again, like Facebook, you can talk to someone in real-time. The only drawback is that you are limited to the amount you can say. A tweet has to be no more than 140 characters. That may sound like a lot of letters but believe me, it isn’t. There can also be a lag at times with Twitter so it isn’t always instant.

The last type of social media site I like, but don’t use as often is YouTube. It was the site that helped get me started on my IBD journey. It is where I got inspiration when I was sick. It is where I learned I wasn’t alone. It is where I met Sara, Maggie, Kelly, and many other inspirational people. I myself tried using YouTube to start my blogging journey. I quickly learned that I was a camera person and I can do better by typing out my thoughts.

Now, there are many more sites out there and some of you might like them. That is fine. I am not against sites like Pinterest or Instagram..I just don’t use them much for IBD related things. Many people do use them so my advice is to go out and explore. Don’t just take what I have to say as an end all. Search the internet. Explore around and find sites that are a good fit for you. There are so many different websites out there. Go out there and have some fun. Just don’t forget to come home for dinner 🙂

Day 12 #NHBPM – Advice for Newly Diagnosed Patients

Nov12

Today I am using one of the bonus topics. When I saw this topic I knew I had to write about it. It is one of the reasons I started this blog.

To anyone reading this and are newly diagnosed with either Colitis or Crohn’s Disease, the first advice I can give is….Take A Deep Breath. Your life is about to change forever. You are entering a whole new world. You will have a lot going against you and years of fights to have. So take a deep breath. Relax. Stay calm because you have a very big and caring community behind you to help.

When I was first diagnosed in the 1980’s, I was given some pamphlets to read and sent home from the hospital. I didn’t know what the disease was all about or what was installed for me over the years. Now, there is the internet. In a matter of minutes you can find out all the information you want, see tons of videos, and meet hundreds of people living with the disease.

So, now after you have taken that breath, take another and another. Now sit down and create a journal. Write down your symptoms, your medicine, your diet. This will help you later on in life when you have problems. Try to keep track of every medicine you take and how it helps or doesn’t help you. Keep track of the side effects.

Now that you have done some work, let’s go have some fun. Search the internet. There are so many people out there to help you out. There are a lot of video’s on YouTube to watch. Some are funny, some informational. Some are just video blogs. After you have watched some of the video’s, come on over to Facebook. There are tons of groups with people who have IBD. You will soon find that you are not alone. You will also find that most of these people will be very open to accept you in.

Now that you have had the time to see what the disease has to offer you, you have to take a mental step. You have to toughen up. This disease is a disgusting and descriptive disease. Many people with it are very open and there is a lot of disgusting things. If you are squeamish and don’t like dirty things…well, you will have to change how you are. You yourself will go through some tough disgusting times and it will be easier if you are ready for it mentally.

After all of this your head is probably spinning. There is so much information to take in. You are probably wondering if you will ever have a normal life again. I am happy to tell you that yes, you can. I myself hold down a job, I have gotten married, and I live life to its fullest. Some people do have severe complications and find it hard to live a normal life. But nothing says that this is going to happen to you. Stay strong and stay positive.

The next big thing you have to do is find yourself a really good gastroenterologist. If you are under 18, you will need a pediatric gastro and in a couple of years find a regular GI. It can take years until you find a good doctor. Don’t despair. They are out there. I myself have had at least 6 GI’s before I found a really great one.

So now, do you feel better? You may have a disease but know the disease does not have you. If you ever have a question or problem, there is always someone out there to help you out. And if you want, just ask me. I will do whatever I can to help you because my motto for this disease is “You are never alone”.

Day 6 – #NHBPM – News Style Post

Nov6

Since the explosion of the world wide web, many people have turned to going online to look for help for problems. For many people with IBD, going to a doctor doesn’t always help. They treat the physical problems, sometimes, and very rarely treat the mental problems. Because of the lack of a bedside manner, patients with IBD look for treatment online in the form of forums, social medias and medical based sites.

One new site designed to help those with many illnesses, including IBD is http://www.meddik.com. This is a new site which just came on the scene. It was developed by 2 medical students, one of which has a relative with IBD. The site is a user based site but also carries links to medical articles. The design behind the site is that you can research not just the inner workings of your disease but get first hand help from people who also suffer from the same.

Another site, with a heavier user base is http://www.crohnology.com. This site is made so that you can connect with people who not only have your disease but live near you. You can also ask questions to everyone on the site. You can look up people taking the same meds as you or have the same side effects or even symptoms.

If you are looking for an upbeat site with a dose of comedy, turn to http://www.ihaveuc.com. Adam has UC and treats his disease with comedy. He believes that laughter heals. He also has on his site a place to post and answer questions from other IBDers. Adam also post informative information about the disease and the treatments used.

If you’re looking for a feminine side to IBD, there is no shortage of that either. Sara at http://www.inflamed-and-untamed.com is probably the most recognizable face for IBD. She talks about a lot of personal dealings with Crohn’s and having a J-Pouch. She has become an inspiration to so many people and when she is ill, she in overwhelmed with well wishers.

Another person who is big on helping others is Kelly. She has a page on Facebook called I-Have-A-Bad-Tummy-With-An-Optimistic-Mind-Chronic-Illness-Support. Kelly is the face of being brave and strong with IBD as she has been very sick this year but still manages to come online to help others. She is yet another big inspiration to many.

If you have an ostomy and love videos then check out Maggie at www,youtube.com/LetsTalkIBD. She shows everyone that just because you don’t have part or all of your intestines doesn’t mean you can’t live life. She shows that you can do whatever you want to do, whether it is swimming in a bikini or going to college. Your life doesn’t stop just because you wear a bag on your side. In fact she shows just how life is just starting after surgery.

Are you athletic? Do you have IBD? Well, your life isn’t over. Brian at http://www.intenseintestines and Heidi from http://www.ostomyoutdoors.com both show that just because you have a disease doesn’t mean you can’t enjoy exercise. Whether it is hiking, running or biking..you can do it all.

With so much help out there online doctors need to step up their game. They can’t give the advice that any of these sites can offer. Most doctors don’t have enough time to spend with their patients to find out what is going on in their minds. It is no wonder why everyone turns to the internet now.