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.

Follow Friday for Oct 19th

Oct19

This has been a busy week for me. Three blogs in one week..wow. I was going to hold off on this one, but I felt like I wanted to put down what was fresh in my mind.

Last night, I had the pleasure of being in a focus group for a brand new website. It is still in its infacy and still trying to improve itself. But from what I see of it, it will go far. The website I had the honor to advise on is www.meddik.com. If you visit this right now, please please please remember that it is still being tested out so if you have problems let them know and give them some time to improve.

The site right now is based on people with Crohn’s, Colitis, and Celiac disease. But, anyone with any medical condition can go on it. There are posts from people with these diseases looking for help and advice. You can ask questions or answer others. One feature of theirs right now is that everyone for the most part is anonymous. That was one of the features we discused in the group and this might change.

One good article about this site was written here http://mashable.com/2012/05/29/meddik-video/. Lauren Hockenson talked with the co-founder Tim Soo and I thought this article best explains the site better than I could. I got to meet Tim last night and he is a really outgoing overall nice guy.

Now I know there are a lot of sites out there to get info and many more social sites. What will make this site different and better is that it will kind of work like Google. It will find results based on your preferences. You can filter what your needs are and it will find results that are like you and others that are realted in a sense. Do if you put a filter to look for Crohn’s Disease, it will pull and show you posts for CD. It will also find ones for IBD, Colitis, etc but …it will let you know how many finds are for your direct filter and how many are sort of related.

So, go check them out and let them know how you like it. If you really have strong feelings on how to help them, you can email me and I will forward it to them. Sometimes emails are better than a message on a website.

Dark Side – What is Yours?

Oct16

There’s a place that I know,it’s not pretty there and few have ever gone. If i show it to you nowwill it make you run away, or will you stay even if it hurts. Even if I try to push you out will you return? And remind me who I really am. Please remind me who I really am

Kelly Clarkson’s songs always seem very personal. She reaches down into her soul to find lyrics and they come out as great songs. From the first time I heard the song “Dark Side” I was hooked on it. I could hear the pain in her voice and can tell she had real emotions to this song.

It wasn’t until I heard the song a couple of times that I started thinking about it. I remember I was on the subway pulling into the Times Square stop when it hit me. Kelly was talking about not having a boyfriend in the song, but that wasn’t my dark side. My dark side, like so many other things in my life lately, had to do with my Crohn’s Disease. I replayed the song on my Ipod and relistened to the words thinking about my dark side.

So much of my disease is kept inside me. There is so much that I hide away from everyone. No one in my life, not even my wife, truly knows every feeling I have when it comes to my disease. Kelly’s words started to ring true to me. If I tell all to my friends and family…will they just run away? Or will they stay and remind me who I really am?

Of course that brings on more thoughts….who am I really? Am I a person with a disease or am I a disease trying to live a life? I think a lot of people with a chronic illness think and feel this. Over time the disease starts to take over and forms our lives. Eventually, we lose sight of who we are and tend to think of ourselves as our disease. I personally like to think I am more than the disease. I have a life, am married, and hold a job. I have been lucky to not let my disease become my life. For some though this isn’t true though. I know when I was a teenager, I didn’t know what I was going to do with my life. I thought, what can I do for a living when I constantly have to run to the bathroom? No one knew of these thoughts though. Back then my dark side started to form. Over time, it grew bigger and bigger.

But….the song does continue…….

like a diamond from black dust, it’s hard to know what can become if you give up. So don’t give up on me, please remind me who I really am.

After a diagnosis, we don’t know what we will become…especially when we are diagnosed at a young age. We think…can I live my life? Will I have a life? Will people like and love me? Will I be able to work or go to school? And usually, even when we get that diagnosis, we are still sick. After saying those questions to ourselves we sometimes want to give up. We are at our most vulnerable.

I chose not to give up early on. After battling my disease for a year I decided I was going to take hold of my life. I wanted to go to college and get a job afterwards. My family helped me make this decision and showed me who I really am. I wanted to become a chef and they stood behind me. They drove me to look at colleges. They helped me with the applications. They stood by me every step of the way. For that I am very thankful.

So, as I am sitting on my bus heading home…listening to the song a third time, I think about my dark side. Since my diagnosis as a teenager, I have hidden a lot away. So many feelings and emotions. Thoughts and despair . Some of them I have shown you on here. Some I still hide away. I don’t know if I will ever get all my feelings out, mainly I don’t know if I could ever really show that dark side of my life. I do know, that what I have shown so far had done a lot for me and for some other people with IBD. My thoughts have made myself and others stronger…but that is another song.

One Really Cool Website

Oct12

Recently, I was going through my bookmarks and I saw one I made for a website which I hadn’t been to in a while. I clicked the link and when I got there, I saw there were a bunch of changes and all for the better. I saw there were new people to link up with and I began exploring a great site that I remember loving when I first joined.
The website I am talking about is http://www.Crohnology.com. Crohnology is a social health network for people with Crohn’s & Colitis to share and learn what treatments work, meet others near them, and track and share their health. It is a fairly new site and has been featured in numerous places including the Summer 2012 edition of Crohn’s Advocate.

So what is the site all about. Well, first off, everyone on the site has IBD. So whoever you talk to will be able to understand just what you are talking about. Second, you can look on a map and find people in your area. You can see who is taking the same meds as you, or have had the same surgery’s. You can ask questions to everyone regardless if you are following them. You can also write blogs on there and share them with everyone.

So what makes this different from other sites. Well, for one thing, the guy that started it, Sean Ahrens, has Crohn’s disease. He understands what we go through and molds his site to those needs. The other uniqueness is the map feature. On most sites you don’t know where anyone is from unless they tell you. From the moment you sign on, you can see all the people who live near you. There is also a feature where you can create a Meet Up so you can plan a get together.

Right now, it is still in its infancy so expect to see more great things from them. I can see them being a leading social website for people with IBD. No one there will judge you. They all have gone through the pain that we have at one point and many are there to help you through the rough time. I know because I have had some questions answered there myself.

I look forward to seeing what the next year brings for this great website. So, after you are finished reading my blog, head on over and join up. You won’t be disappointed. You can also find them on Twitter @Crohnology and on Facebook https://www.facebook.com/Crohnology

Guest Post: Sarah

Oct9

Imagine this scenario: It’s 7:15 am and your phone is ringing. It’s a principal, asking if you’re available for work that day. “Sure,” you reply, knowing that if you don’t take the day of work, you won’t be getting paid for that day. “School starts at 8:30, see you soon!” You hop in the shower, eat your breakfast, get your lunch packed, and oh – maybe my Crohn’s is acting up a bit this morning. You’re hoping that you can get everything out of your system before you leave for work. After all, you’re working in a school you’ve never been to before. You have no idea when you’ll have a break to go to the washroom. You have no idea where the washrooms are. You have no idea what students you will have or whether or not you will have a friendly teacher nearby who could “be so kind as to watch my class for a couple of minutes.” But it’s okay, you’re starting to feel a little bit better, so you finish packing up and leave your place at 8 am for school. You’re almost there and you start to feel that recognizable grumble in your stomach. You start thinking, “Do I have time to stop at a coffee shop on my way to school to use the restroom? Can I hold it until I’m at school? Will I even be able to find the bathroom there?” Welcome to my life.

I’m a young teacher with Crohn’s going into my third year of teaching. For the first year of my teaching career, I was lucky enough to have a full year contract. I was able to teach the same groups of children every day, be in my own classroom, get to know the staff and have a familiar environment and routine. For the past year and a bit, I have been doing what most new teachers have to do – supply teaching.

As most of you can imagine, teaching in an elementary or secondary school is not an ideal job for Crohn’s sufferers. You’re in class for up to two hours at a time, as well as standing outside for yard duty a few times per week, and you’re not allowed to leave the children alone. You have a limited number of sick days and you’re responsible for planning the days when you’re away. Not that Crohnies who work in other environments have better sick days, but at least their morning isn’t spent thinking up a lesson that is manageable for someone who doesn’t know your students and school routines.

Crohn’s is unpredictable. Teaching is unpredictable. Not the best combination. When I was applying for teacher’s college and teaching jobs, however, this thought didn’t even cross my mind. I didn’t want my Crohn’s to affect what I did with my life – why should I limit myself to a desk job if my passion is working with children in a classroom setting? When I would get asked, “Are you worried about your health with teaching?” I would respond with, “Sure, but it’s what I want to do.”

My choice to stick with teaching has left me with a few obstacles which I must continuously work on.

As a contract teacher, I was at the same school every day. I had a great daily routine – I could wake up, eat, clear my bowels, and move on with my day. Knowing the routine, if I felt my tummy rumblin’, I could check the clock and I knew when the bells would ring and when I could quickly make it to the nearest restroom!

As everyone with Crohn’s has probably had experience with, even when we talk about Crohn’s with co-workers or friends, a lot of people don’t understand what we’re dealing with. Working with the same group of teachers throughout the year, I felt I was able to open up more about my illness. For the most part, the staff at my school were very understanding of the illness. The closest staff members to my classroom knew that, on occasion, I may pop my head in and say, “Watch my kids!” while I sprinted down the hall to the staff room washroom. They knew my situation a little bit and weren’t surprised when things like this happened.

I also had many dealings with my principal about my Crohn’s. The schedule of the teacher, being very much an 8:30 am – 3:30 pm type of job, doesn’t always allow for easy scheduling of appointments. My teaching contract was in a small town 2 hours away from my GI. In order to make it to an appointment, I would have to take a whole day off work. My principal was very understanding every time I had to take a sick day for a doctor’s appointments or colonoscopy, but I always felt like I was wasting my sick days on appointments. Shouldn’t I be using these sick days when I actually am feeling sick, instead of when I need to go for testing or checkups?

With Crohn’s, we also all know that a lot can change throughout the course of a year. September and October of 2010 in my classroom were great. In November, the stress of the job, being away from my family and friends, and the unpredictability of my Crohn’s, made my health go downhill. As I look back now, almost two years later, I still wonder how I survived November and December of 2010. I was waking up at all hours of the night to use the washroom, I was making an hourly trip to the washroom between every class, I had lost 15 pounds, and I wasn’t eating well, especially during the day because I was worried of having to make even more frequent trips to the washroom. After all, I can’t leave my students alone in the classroom. Meanwhile, I was trying to plan entertaining lessons for my students, mark assignments and tests, and write report cards. I had to work my hardest at staying energetic in the classroom, knowing that I hadn’t slept through the night in weeks.

Coming back after a much needed Christmas break, my new double dose of Humira and my large quantities of prednisone were keeping me on track. Many people did notice the puffy face – but I guess that is a small price to pay for feeling healthy.

The rest of the year went as smoothly as I could have hoped for my first year of teaching. My health stayed on track for the most part and I planned, marked, and taught my way to the end of June. I had survived my first year of teaching full time.

Since that full time contract, I have been put back into a supply (or substitute) teaching environment. I am basically on call every teaching day and replace teachers when they are sick or when they have a meeting. When I walk into a new “work” environment every day, I’m forced to meet new staff, learn new routines, and figure out a new environment. This, on its own, is a stressful situation. Add in a group of students and a full day of activities, and you’ve got yourself a normal day in my life.

Maybe being a supply teacher, though not an ideal job since I’m not working every day, has been a blessing in disguise for me this past year. I am a strong believer that everything happens for a reason and I think this has been a good chance for my Crohn’s to settle down. Being on call, I know that if I’m feeling sick on any given day or have had a bad night, I don’t need to accept any teaching work. And when I do need to teach and have to have that awkward, “Will you watch my class for a couple of minutes while I run to the washroom?” moment, I just have to think to myself, “Well, everyone has to poop. And for me it’s just right now. I have a reason, and it’s ok.”

While there are many challenges to being a teacher with Crohn’s disease, I think I’m proof that it can be done. As with any job, I think it’s a matter of knowing your routines, your environment, and your co-workers, and finding a way to make your job work for you.

You can check out Sarah’s blog about the novels she reads at http://www.bookstacksarah.blogspot.ca

You can also follow her on twitter @Sarah_Bo_Bera

LDN – End of Week 2

Oct7

It has been 2 weeks now of Low Dose Naltrexone. Looks like my body is starting to adjust to the med. I am starting to sleep better as I am not as tired. I still feel like I am up half the night but I think I am in some weird dream state. As long as I can get through the day without thinking I need sleep, then I am ok. The headaches are also going away. YEAH!!
The big thing I am noticing now, and this could be from going off Humira, is that a lot of my body pains are back. It is mainly muscle pains. My biggest pain though is in my feet. They seem achy when I am in shoes and at work, the shoes can’t come off 😦 I use the orthopedic insoles and I just got new ones. Let’s see if they help. Also, got a massage today so let’s see if that helps the body pains.

So far, after 2 weeks, life has been good. Still no change in my Crohn’s but since I wasn’t that bad, I might not see a difference. I won’t know until February when I go for a colonoscopy just how well it is working.

Well, that is all for now. Not much new to write. Just wanted to update everyone on my journey.

LDN – End of Week 1

Oct2

Today marks the first day of my second week on Low Dose Naltrexone. Looking back over the past week I have noticed just how rough I have had it.

First off, I just want to say, I am not trying to scare anyone off of this med. I knew of the side effects going in and still proceeded. I knew I was going to have the problems I am having so it isn’t like they were unexpected. Before anyone starts any med, you should do your research and learn all you can about it.

With that said, my main side effect right now is insomnia. What is weird though, is that I can’t tell if I am sleeping or awake. I feel like I am in an in between state at times. I am conscious of the time, yet I am having some weird dreams that seem real (another side effect I had heard off). I know I dream normally I just never remember them. On this med though, I am very conscious of my dreams and they seem like just thoughts in my head. Like today for example. I dreamt that I was part of the gang on the TV show How I Met Your Mother. Lily and Marshall had bought a restaurant in Bushwick, Brooklyn and it was failing. I sat there with them after closing to offer my professional advice on why it was failing. Everything seemed so real to me..but hello…it is a TV show. They aren’t real. It is so hard to describe the feelings on here. Also, throughout the dream, I am conscious of tossing and turning and being up throughout the night.

So, that is by far the biggest and worst side effect that I have. But, in turn, it is causing others that I don’t like. I have noticed my personality has changed for the worse. I am more irritable and nasty. I have a low tolerance and seem to get pissed off very easily now. I know this is caused from not sleeping well. I try to catch myself when I get in the bad mood but it is so hard to do anything. I am just so tired all the time that I am at the point of not caring about what I say or do.

I am a fighter. I don’t give in to things easily. This is just another challenge for me and I won’t give in to this either. I know this is temporary. In another couple of weeks, things should normalize and I should start sleeping again. I know there is an end to this. It is that hope that keeps me going. This isn’t permanent.

So like I said in the beginning, I am not trying to scare anyone. All of my symptoms right now are normal for the drug. I wasn’t prepared for the reality of it but I move on. I don’t let it stop me. We IBDers….we are all fighters. Many people have gone through worse situations. Just know, that if any of you choose to go on LDN, it is a rough road in the beginning, but from what I am told, it is worth it. I hope to find this out myself real soon.