Monday, September 30, 2013

150th Blog Entry: Importance of Peer Support Online

Why did I start a blog? What is the point of this blog: catching up on little things.


I started writing this blog in Feb of 2012. A year and a half a go! I have written 150 blog entries, I've had 14,906 visits to my site. ( breaking it down that = 784 people visiting my site per month. However, that monthly count increases each month. For the month of September I had 981 visits). 

Why does this matter?

 It means, I'm not completely boring and perhaps it means other CFers have found my blog and enjoy reading and relating to topics I discuss. I love getting comments from people, I have met many people through blogging and I love this idea of networking. 

( fun fact: this is latest views I've broken down by location)
United States 11818 
Russia 760
Canada 309
Germany 251
United Kingdom 194
Ukraine 151
Australia 137
South Korea 89
France 87
Spain 83

I especially feel it is important to network via computers and other electronic devices for CFers. Since we are discouraged from being around each other, we have no where else to turn to talk to others who can fully relate to what we are going through.

My family and friends (non-CF) of course are an amazing support system and I love them very much for this. But, in most cases there are support groups of peers for people with Chronic Illnesses. Such as AIDS, cancer, etc.s We do not have this type of outlet. 

I'm fortunate in some ways, and not so much in others. When I was growing up doctors had no idea about these "bugs" that break down our ability to fight CF and progress our disease faster. Now we do understand the risks associated with being around other CF patients. 
For more info on the bacteria we can spread and harbor -> look at these two significant "bugs" that the CF community is trying to avoid like the plague--

 Cepacia B. click HERE and for info on the newest "bug" MRSA click HERE!

This discovery was made around 1996, when I was 12 years old.  I went from hanging out at regularly with my CF friends, to not seeing them. Most of them did catch various "bugs" and within 2 years, 3 of my 4 best friends had passed away. This was difficult, but I wouldn't trade getting to know them, be with them. Now, CFers do not know many other CFers face-to-face. Instead the generations younger than me, who were NEVER allowed contact grew up only getting to know others via facebook and social media sites. Which is helpful, but not the same. Peer support is a very big challenge in the CF community.

This is one of the many reasons why I'm focusing my Grad School Research and future career to CF Social Work. Even though, I will not be able to use direct services to provide support for CF patients (since I can't be around them), I can still use reaerch, funding, advocacy, and policy change to help better the social needs of CFers.

My blog I started 1.5 years ago, was my first step in this direction. It wasn't a big step, but it got me out in the world sharing and advocating. Shortly after, I started doing CF Stand Up Comedy, and I become increasingly more involved in CF Walks and Fundraisers each year. 

Also- UPDATE: My liver enzymes were normal last week at clinic, the Cipro and Prednisone helped my lungs and I'm feeling a lot better. So here's hoping my lung function goes up in Oct at my next clinic. Also, been thinking a lot about my friend Laura! She has CF, she is the 4th of (those 4 childhood friends), she got married is last week! But, I've been thinking about how much she has been struggling this year. I wish I could make it so she didn't struggle. She is back in the hospital, more infections, more battling of MRSA, and waiting for transplant coordinator to get her case put together, so she can be listed for new lungs. She always has a go-get-em attitude and can smile through anything. She is absolutely amazing! I made a video for her awhile ago. It is posted in this blog : Video for Laura to keep a smile on her face :-)


This is the purpose of this blog: To understand CF and how it affects me (perhaps other patients even) daily. My blog is very personal, I share a lot. I don't discuss only hard-core CF topics or controversial topics. I want the people who read my blog to get to me and how CF affects me. Hopefully, in return this blog affects some of my readers.


AND lastly, I'm doing a CF walk in Peoria on October 5th! Feel free to join me or donate at this link: Cheriz's CF Walk Page!
 (the GreatStrides Pic on the left side of my blog will always have most next CF Walk linked to it)

I hope you understand why I wrote my blog and have been enjoying reading. Thank you for your support!

2 comments:

  1. Hello Cheriz! I don't know if you remember me but, my name is Traci Sanchez (a.k.a. Mom Sanchez) mother to Tyler and Jason. We are from Stanley Garrity Chapter. Nancy Bailey posted your blog on Facebook and I couldn't help but comment. You are absolutely an amazing inspiration to others! I always remember you being a happy and outgoing State Sweetheart, not realizing the journey you were going through at the time. I remember Mom Scanlan saying what a remarkable girl you are, and she couldn't be more right. You have truly grown to be a beautiful young lady and could not be more proud of you!

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    1. aw, thanks! Of course, I remember you and the boys! I'm still in touch with T.J from Stanley Garrity :-) I loved those years, great times. Everyone always understood about my CF, chapter advisors, even the boys in the chapters made sure I had my meds and helped take care. I can't tell you how many times, Frankie, David or Johnny would try to get to eat tons of fast food to gain weight. Haha, great memories. Thank you for reading, I'm glad people enjoy the blog! Take Care, and maybe now that I live in the burbs I could attend some Garrity stuff!

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