It’s Survey Time

May30

So as some of you know I am a fan of WEGO Health and what they have to offer the medical community. Well, starting today they are holding a survey on the online Crohn’s and Ulcerative Colitis communities. They have asked me to share the survey to make sure that they get as many patients and caregivers involved as possible. The survey will take about 10 minutes. Please take the time and come here to take it..

https://www.surveymonkey.com/s/G8S8FTY.

As a thank you for the survey, WEGO Health will be making a donation to a charity of my choice.

Thank you for helping out.

Health Activist Writer’s Month Challange – Day 1 Getting Started

Apr1

HAWMC 2012 slider 2 resized 600

Here we go again. Seems like just yesterday I was blogging everyday for WEGO Health. Well, it is a new year and a new challenge. So, without further adieu, let’s jump right into it.

Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

I have to say I was torn on whether to do this or not. Last year I got burned out from writing every day and it kind of turned me off of blogging for a bit. When I got the email for the challenge I didn’t know if I wanted to participate. Now I read this question, and I know why I am doing this.

I got involved this year because when I blog, it isn’t always about me. What I write is more to inform and help others. I am doing what I do so others can learn and know that they aren’t alone with their disease. Yes, the stories are about me and my experience but I don’t tell them to be vain or brag. I tell my stories to inform others. I share my experience with LDN and Gluten Free so anyone thinking about them can see what it is like. I don’t even write to get recognition. I just want to help.

To answer the second question..I don’t view myself as a newbie but not quite a veteran either. I have been blogging for a little over a year now. I have gone from not knowing anyone online to being part of a great community. I have met so many great people and have even been told how my blog has helped them. Since I have been blogging almost every month since starting and already doing a Writer’s Month Challenge, I can’t say I am a newbie. For me this is now sort of repetitious. But I do it for you, the reader.

Now that you have read this, and if you read my blog often, I want to ask you a question. Why aren’t you participating? Well, for some of you, maybe you are. But for the ones that aren’t why not. Why not start blogging yourselves. I can say it is definitely therapeutic and helps in releasing stress. It is a great way to meet others in the same situation. And it is a great way to help others. If you do have a blog, leave me a message telling me what your site is. Share it with everyone. Let’s make our great community even bigger.

Wego Health HAAWards Finalists

Feb23

I know I haven’t written much in the past month. I have been really busy with so many things that I haven’t had the time to come on here. But, I do now and I have great news (well, great for me) 🙂

Last year Wego Health opened up nominations for their Health Activist Awards and I was nominated for the Ms?Mr Congeniality award. This past week they announced all the finalist and I made the cut. So I am now one of 5 finalists. Sadly I am not up for any of the other awards I was nominated for but that is ok. Just being nominated is an honor.

So, I was sitting here thinking about this award and just what the category is all about. Mr. Congeniality. Anyone that knows me might say I am far from this in real life. I can be very loud at times and even rude. I would have to agree with those people because, yes, I am. I know I am and I am ok with it. But online, I am another person. When it comes to an illness, you have to be different. I don’t mean in a talk in hush tones and walk on eggshells different. It is just that I know what it is like to be sick with a disease no one really understands except for the people with it.

Part of going through life with IBD is that no one can see it and most definitely most people don’t understand it. Heck, CCFA wants to show everyone it is a pooping disease. Because of this many of us are depressed, angry and just can’t cope. It isn’t easy to deal with a disease when no one around you can help you out. I understand all of this and I know if I spoke to anyone with IBD in a nasty tone, it would not go well. So I have to alter who I am. When it comes to people with any illness, I turn into a caring person. I used to not want to deal with illness but now, I have made it a part of my life. And I am using it to grow. Because I change who I am to people online, I am trying to be a better person in my real life also. I am trying to be more caring, more understanding and less abrasive.

People online see me as a congenial person and when my wife saw I was nominated for this award she laughed. This really hit me as it was really then that I noticed I was two different people (that’s the Gemini in me). So just being nominated for this award has already helped in changing me. I am now trying to be a better person. Not just to sick people, but to everyone.

As for the award, I share the honor the honor with some other people who have now opened my eyes to some other illnesses that I didn’t even know existed. I hold nothing against these people even though I am battling with them for the award so I want to share who they are and their site. They are:

Barby Ingle – www.barbyingle.com

Pamela Sloate – http://dystoniamuse.com/

Peachy Pains – www.peachypains.com

Tosha Sisler – www.bottledtime.wordpress.com

Good luck to everyone for the final spot and no matter who is given the award, we are all winners.

Day 7 #NHBPM – Redesign a Doctors Office

Nov7

Today I get to do a post about something new. My previous post’s for NHBPM have been rehash information that I have talked about in the past. Now, I get to talk about something new.

Redesign a doctor’s office. First let me say I am not the best decorator or designer. If you ever look at the games I play on Facebook…my farms and cities etc are all a mess and unorganized 🙂 But I will make the attempt.

The first thing I would change is the temperature. I don’t know about anyone else, but most doctors offices I go to are way to hot. It seems like none of them believe in air conditioning. What makes this worse is that I seem to do worse in the heat. For whatever reasons, the hotter it is, the worse my Crohn’s is. Also, because sometimes you have to wait forever, the heat makes waiting really unbearable.

The second thing I would change is the bathrooms. I am not sure how it is outside of NYC, but most docs I go to have one bathroom. Um, a lot of people who go to the doctor are sick and need to use the bathroom. Not to mention us patients with IBD that well, need a bathroom all to ourselves. Multiple rooms with multiple stalls would be great. Having just one bathroom with one toilet just doesn’t cut it in my book.

Now we enter the exam room. And for some reason, the room here is always freezing instead of being hot. So we get undressed and sit on a metal table in a freezing room. Again, let’s fix the A/C and get the proper temperature. And speaking of being undressed, a lot of places give you the hospital gown to put on. Here is my next change…multiple size gowns. It seems like doctors carry one size….XXXXSmall. And the gowns are so old that half of the ties are broken or missing.

So now we are in the exam room, half-naked and we wait, and wait, and wait. I would love to have a countdown clock with a time of when I am going to see the dr. I know his time is money…but what about mine. I would love to not waste my day sitting half-naked waiting for someone to come in and spend 2 minutes with me.

So lets see…so far I have a well tuned A/C unit, more bathrooms, better gowns, and some sort of waiting countdown clock.

Not sure what else I would change at the moment. To be honest, my GI doc’s office is actually pretty good overall so there isn’t much I would change. I am thinking about other offices I have been in while I write this.

So as the first week of posts comes to a close, so does my list of redesigning my docs office. It wasn’t much but it was an attempt. I would love to hear what other people think of their offices and what they would change. My challenge to you is do you think you can actually get the doc to make some of the changes you want?

Day 5 – Write a #ListOf3 Things that you’re thankful for / excited about / or inspired by

Nov5

For today’s post I had the choice to write about a Health Activist Soapbox or this…and I think a lot of people will choose the soapbox so I am going with this one.
List of 3 things. Oy. Where to start. I think of talking about 3 of one topic I will talk about one of each topic.

Topic 1 – What am I thankful for? Very strong question and with Thanksgiving just around the corner this is on my mind. I have gone through so much this past year and there is so much to be thankful for. The most recent thing is that I made it through hurricane Sandy without major issues. I can say I am still alive and in pretty good health. I have a job in times when unemployment is high. But my answer to this question…I am thankful for my doctor. First..if you haven’t yet, go read my previous blog on day 3……….ok, your back. Now you know where I am going. I am thankful for my GI doctor. So many patients have doctors that don’t listen and worst off don’t care. A lot of docs just seem to go through the motions and don’t seem real invested in your health. My doctor though is different. He listens. Not just to what I have to say but he listens to my advice. He doesn’t spew advice from medical books. Instead he bases his thoughts on current research. Recently I wanted off Humira and wanted to try out Low Dose Naltrexone. He had no experience with the med, knew nothing about it as a treatment for Crohn’s, yet he did his own research, listened to my concerns and decided to work with me on a solution to healing my Crohn’s. I don’t know if the medicine will help or even if I will be able to tolerate it long-term but my doc is letting me experiment with it and he is learning at the same time. He is great for all that he does and I can tell that if he takes the time to do research for me then he is doing it for other patients also. And for these reasons I am very thankful to have found him.

Topic 2 – What am I excited about? This up coming year I am excited for so much. First, instead of walking in the Take Steps walk I want to volunteer. I want to be able to give back some. Also, I am not great at fund-raising so this is my way of helping out my cause. I am excited to work at the walk and talk with others affected with IBD. But my excitement doesn’t end there. In 2013, for the first time, I want to volunteer my time at Camp Oasis. This is a camp that is held for a week in the summer for kids with IBD. Most of the staff and medical team have IBD and the kids can look up to them and see that there is hope to living a normal life. This is the reason I became a health activist. I grew up alone with my disease. This year I said to myself that I didn’t want anyone to have to go through what I did. I wanted to help people, especially the kids know that they are not alone. What better way to do this than to talk directly with them at Camp Oasis. I hear so many stories from people on how much fun it is working there. I want to finally experience this joy and if all goes well..I will. Just thinking about it now gets me excited.

Topic 3 – What has inspired you? For me it isn’t a what but who. Again, if you read my blogs, you probably know this answer already. So go ahead and look back over my previous blogs. If you don’t have time, just look at the guest post I did for WEGO Health. All the names are there. Sara, Kelly, Maggie, Charis, Jackie. These were just the first batch of people to truly inspire me to speak up and do what I now do. As time goes on, I have met other people and heard their stories. Now I have other people inspiring me….Alyssa, Pat, Amanda, Michael, Peter, Claire, and so many others. Now, I don’t want to put last names because I don’t know who wants their name out there..but if you run in the circles I run in, you probably know these names.

Day 4 – Write about what’s in your bag / purse / backpack every day

Nov4

Ah yes – the Go bag, or our version of the Go bag. Almost every person with IBD knows about this bag. We all kind of differ on some items but for the most part we all share the same products. So, what is in mine you ask.

Well, to start off, my bag is a normal book bag. I use this because, 1 – it is easy to carry..just put in on your shoulders. 2 – it is big enough to hide any embarrassing items – you will see what I mean. 3 – it is big enough to carry everything and I can use it to carry other items like packages, umbrellas, kindle, etc.

Now, I don’t always carry this bag with me. When I go to work, I size everything down and put the bare essentials in my work bag. If I am going out and doing daily chores..and feeling great, I will not bring anything. Then there are the bad flare days where I can’t get off the toilet. Then the bag is glued to my back.

Here is my list of products:

Travel Size Toilet Paper
Travel Size Toilet Seat Covers
Hand Sanitizer
Extra underwear
Plastic bag with underwear
Latex Gloves
Immodium/Tylenol/Tums/Gas X (all in a pill dispenser)
Waterless soap
Travel Size Wet Wipes
Flashlight

So there it is. My IBD Go Bag. What is in yours? I would love to hear your comments and compare. Do you have something essential in yours that I am missing?

Day 3 #NHBPM – A Conversation with my Doctor

Nov3

Day 3 – I like this topic. I have talked about this one also but I would love to reshare it because it can give people hope.

About 3 months ago, I decided I wanted off Humira. I was getting really bad psoriasis on my legs and it was starting to spread to my stomach. I had had enough. I knew the conversation with my GI doc was going to be rough. First, I have been on pretty much every type of medicine out there so there wasn’t really anything left for me to try. Second…what doctor wants to hear that a patient is refusing their current treatment.

I did a lot of research beforehand on a new drug therapy and I decided that I wanted to try Low Dose Naltrexone or LDN. It has been gaining popularity within the IBD community for having great results with little to no side effects. That was what I needed because I seem to get all the side effects. The main problem though is that it is not a standard treatment for Crohn’s right now and is still considered experimental. I felt like I had tried all the conventional therapies so maybe it was time for something new. I printed out some information and a case study done on the drug and brought it with me to my appt.

Needless to say, the morning of my GI appt, I was very nervous. I didn’t know what my doc would say or think. He started out talking to me about how I am and then did his exam. Then we got down to brass tactics. I told him I was at the point where I need to control the psoriasis first rather than the CD so I wanted off Humira. Before he could talk me out of it, I went into suggesting LDN to him. He then told me he was familiar with the drug (as a low dose form) and he doesn’t currently have any patients on it and he has never used it. My heart sank. But…(wait, did he say but..) he would do some research into it and let me know within a week. I was shocked at this. I have never had a doctor say he would research something just for me. I think every doc should do this for every patient…I just never had it done before. All my past doctors were know it all docs who didn’t want to hear anything.

I was so excited. I was going off Humira, had a doctor that cared, and might get something that will really help me. A week went by…and I heard nothing. I knew my doc was going on vacation so I gave him another week. After 2 weeks, I messaged him and he told me that he would do it. YEAH!!!

When I went back to him about another 2 weeks later to get my script, we talked a little. Now I never gave him the information I had because I didn’t want to be pushy and scare him. When he said he would do the research, I knew he would find the same info. I however brought it with me again just in case. He did admit that this was all new to him and he wasn’t even sure just how much to prescribe. Thankfully I did my research and was able to help him with that. After I told him…he then says that the dosage matched what they used in the study. I think he really knew and was testing me to see if I really looked into the med. Gothcha doc 🙂 So we talked a little more about this and afterwards I got my script.

I walked out of his office head held high. I was in new territory now and was proud of myself for sticking to my guns. But what I learned from all of this is that you should never ever ever be afraid to talk to your doctor. I think your treatments should be a 2 way street. You should have as much say as your doctor. I have been very lucky to have found such a great, caring and resourceful doctor. He is open to suggestions and doesn’t think that he knows it all.

And that is my message to everyone. Talk to your doctor. Sometime they will be stubborn and when they get like that, insist some more. Don’t ever back down or give in. Remember, your body is your body…not theirs. You know your body best and how you react to things. Make your voice heard. And if your doctor won’t listen to you…find another one. They truly are a dime a dozen.

Why I Write About My Health

Nov1

So here is my first of many posts for Wegohealth.com National Health Blog Post Month. The challenge for this is to blog about different things (they give us the topics) every day for a month. So here is my first post and the topic is Why I Write About My Health.

It all started in 2011. I was going through the worst flare up of my Crohn’s Disease in my life. I was going to the bathroom a good 30 times a day and really couldn’t live my life. I had been on numerous medicines throughout my life for my Crohn’s but nothing seemed to really help me. By the time January 2012 came around, depression had set in. I felt so alone with my disease and felt like I had no one to turn to. I knew very little about my disease and knew no one with it.

I was diagnosed in 1988 and didn’t have the internet back then. Whatever I learned about the disease came from outdated books and pamphlets. For most of my life I survived and got through my problems. My disease never really interfered with my life so I let it be. Now, that it was taking over my life, I didn’t know where to turn to.

Like most people with problems, I turned to the internet. In all honesty, I was so bad I thought I was going to need surgery and was looking up just what an ostomy bag was. I had never seen one before and knew nothing about it. I wanted to prepare myself mentally for what I thought was to come. My first searches took me to YouTube where I found some great videos from other people with Crohns. The people I found in these videos would go on to be my inspiration.

One thing these fellow Crohnies showed me was that no matter how bad things were, we could overcome the bad times. I soon realized that I had ignored the internet all these years. I started doing more searches and found so many websites. I then turned to one of the biggest social networks out there, Facebook. I started to see how people were coming together with their disease and helping each other. I thought back over my life and wished that I had something like this growing up. It was then that I decided I wanted to help out. I made up my mind that I wanted to help others out and let everyone out there with IBD know that they don’t have to be alone like I was.

My first attempt was to make some videos but this wasn’t for me. I felt very awkward talking to a camera. I also couldn’t interact with anyone doing this. So, I decided to write instead of talking and turned to Tumblr. This was fine for a little while but I soon learned that the site was more for sharing Memes. Finally I turned to WordPress and now I have this website. I have my own space to share my experiences and a place for others to feel comfortable to open up about their experiences.

Here it is now at the end of 2012. I have come a long way in such a short time. My main goal from the start has not changed though and that is why I write about my health……I don’t ever want anyone with IBD to feel alone.

My First Interview

Jul9

Recently I was contacted by the good people over at WEGO Health. They wanted to do a little interview with me to help get my message out. In exchange, I would help get their message out.

First off, here is the interview.. http://blog.wegohealth.com/2012/07/09/featuring-health-activists-jeffrey-of-a-guy-with-crohns/

For anyone that doesn’t know who they are, WEGO Health (www.wegohealth.com) is a site dedicated to bringing awareness to just about any health issue. They do articles on different topics, highlight an illness for a month, hold Twitter chats and help bring people with same the same illnesses together.

Now, for anyone that knows me, knows I won’t advocate for something I don’t believe in. I am true to my word and beliefs. I wouldn’t spread WEGO Health’s words if I didn’t believe in them. So, check them out and maybe you can find some answers to some problems you might be having.

I have to say, I was so happy to be asked to do this interview. One, I love getting the guy’s view of IBD out there and this is a big step in that direction. Second, it is showing me that people are seeing my posts and like what I have to say. A big reason I liked the interview, is I got to publicly thank some of the people who inspired me to get on with my life and to speak up. Thank you Sara Ringer, Kelly Frick, Jackie Zimmerman, Charis Kirk and Maggie Baldwin for setting me down this road.

Of course there are so many others that have been an inspiration to me and that is why I do the Follow Friday thingy here. It is my way of saying thank you. I can’t go and list everyone because the list would just keep going. Every week I seem to meet inspiration people and if you read my blog, you would see that.

Now, I don’t do what I am doing for fame. I hate being in the spotlight. I do it so anyone with IBD would know that they aren’t alone. I grew up all alone with this unknown disease. In the 80’s and 90’s before there was the internet, it was hard to now only learn about Crohn’s Disease but to meet people with it. Now, I can meet someone new everyday. And hopefully, no one has to feel like I did. That is why I do what I do. And if you ever feel alone, just look me up and say Hi.

My biggest thank you I have saved for last. It is to everyone that reads my blogs and Tweets with me and is there to keep me moving. It is to all the people who are there to pick me up when I’m down. It’s to everyone that leaves me comments saying thank you. Mainly, it is to YOU, the reader. Thank You.

Follow Fridays is Back

Jun29

I realized this morning that since I changed domains from Tumblr to WordPress, I hadn’t done any of my follows on Fridays. I have been preoccupied with my blogs and haven’t focused much on them..so I apologise.

So, to restart the follows, I am going to highlight a website that I have been looking at a lot more lately. This one is http://www.wegohealth.com and it doesn’t just focus on IBD. The great thing about this site is that they cover almost any health condition out there. It is an interactive site, meaning there are groups where you can write and connect with other people. What is great is since a lot of people with IBD suffer from other ailments also, you can connect and get information from all your ailments on this one site. This site also has articles to read and they seem to highlight and talk about different diseases every month. If you are on Twitter, they can be found at @wegohealth and every Tuesday they run an interactive chat.

Another site that I think is really good is http://stopthinkingstartwriting.blogspot.com/ This one is written by a woman named Amanda. She, like so many others with a disease, is having a rough time. She has been undiagnosed now for almost 4 years but is a tough trooper and is still fighting. A lot of her symptoms point to IBD but as many of us know, sometimes it is just hard to pinpoint the area that is affected and causing the problems. Her blog is very well written and one day she will be a famous writer. For all you caring people out there, don’t be scared to reach out to Amanda if you think you can help or just want to lend some support. Too much support never hurt anyone.

Well, that is my picks for this week. Enjoy your weekend and stay safe this July 4th.