Day 16 #NHBPM – How You Take Time for Yourself

Time for myself. What is that?

I am sure a lot of people ask that question these days. We live in a busy fast pace world. No one seems to stop and smell the roses. We work 8-10 hours a day, spend about 2-3 hours commuting and 6-8 hours sleeping. That is about 16-21 hours out of our lives, leaving anywhere from 3-8 hours to eat, shower, do chores, etc. So time for myself…again, what is that?

Sad thing is that for us IBDers, stress is a big factor. It is know that the more stress you have, the more likely you will have a flare or it makes it harder to come out of one. We need to listen to our bodies when it tells us STOP! Let Me REST!!

For me, I make sure to factor in some time to just chill and relax. I try to spend some hours at night just vegging out. This may be watching television or playing on the computer. But it is time for my body to relax and unwind. About every 4-5 weeks, I get messages. This helps in releasing the body of stress and it is a time for me to relax and not think about anything.

There are so many ways for a person to make some time for themselves. One way is to take a class. It can be anything from educational to fitness to recreational. The reason I say a class is that they are usually scheduled ahead of time. This forces you to put it on a calendar and make the time for it.

Another way to make time (and this is more for the ladies) is instead of taking a shower, draw yourself a bath and take a 1/2 hour or an hour to soak it up and relax. If you have kids, tell your spouse to watch over them for that time. Have some wine, play some relaxing music or read a book in there.

Lastly, on the days off from work, instead of doing chores, take your loved one out and have some fun. Go to a movie or museum. Go for a hike if you like. Whatever it is, just do it. Don’t hesitate. If you don’t make the attempt, you will never do it and you will just keep yourself stressed.

Now I know some of you are going to say that they just don’t have the time to do these things. I say, you do, you just don’t know it. If you have a kid, get a babysitter. If you work real long hours, then see about taking a personal day one day. If you just make excuses of why you can’t do it, then you need to look at yourself and ask why you’re not making the time.

Crohn’s and Colitis is a tricky disease. We can go for years with no problems and then suddenly, BAM, we are sick for months on end. If we don’t take the time now for ourselves, we might regret it. No matter the situation you are in, there is always a couple of hours in the day to take as a “Me” time.

So go do it now. Step away from the computer and go enjoy yourself with a loved one and do something fun. Go bowling. Go see a movie. Go to a museum. Doesn’t matter what you do….just go and do it.

Day 14 #NHBPM – Advice for dealing with negative feedback in your community

Nov14

We end the 2nd week of National Health Blog Post Month with a topic that I am lucky not to have too much experience about. I am to give advice with negative feedback.

To start, I have only been doing this blog for a short time. So far I haven’t seemed to piss of many people and haven’t really heard any real negative feedback. No one has come after me for the things I have said and I have to say, I am lucky. However, I know we live in a cruel world and one day I will get the negativity. It is just a fact of life.

So how will I and how should you deal with it. Well, for starters, read it. When you finish the comment, read it again. I say this because not all negative feedback is bad. We look at something different from our views as negative. So, read the comment and try to be in that persons shoes. Try to see where they are coming from. Sometimes a negative comment just comes from pent-up anger and the person needed to vent, but took it out on you.

Stay calm. Don’t get all worked up over it. If you get feedback on your blog, remember you control the blog. If you truly don’t like it, delete it. I have had some difference of views in my comments and I leave them. I want my readers to see the whole picture, not just my views. I don’t know everything and if someone has better advice, then let them share it. I may not agree with it, but I can understand it.

Now you might say, what if it is something really bad, something hurtful? Well, that is a whole other story. I know some bloggers that have gotten hate sent their way. They were personally verbally attacked for no reason and the commenter was clearly wrong in what they are saying. For this I say, take the high road. Don’t give in to them. Delete their comment and if they persist, report them. And if it gets to the point where you think you might be in real danger, call the authorities.

Hopefully, no one gets real physical threats. After all, we are just trying to share a part of our lives here. Honestly, if you don’t like what I am writing, then don’t read it. You have that choice. Always remember that the blogger is here to share a story and try to help others. Negative comments take away time and energy from that purpose. So let’s keep it clean out there and remember that we are one big happy family and we need each other for support.

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 10 – #NHBPM Should people post about their (or loved ones) health on Facebook?

Nov10

Facebook. One of probably the most recognizable name in the 21st Century. Whether you are on it for the games, meeting people, or finding answers. It has been used to help start revolutions in countries around the world. For some it is a place to post pictures of their pets and loved ones. And then there are people who want nothing to do with it and never use it. There are even some of us that get fed up with the changes and vow never to use it again…but most of us return.

For many of us with chronic illnesses, we use Facebook to connect with other people in our situation. I myself belong to at least 10 different IBD related groups and pages. I probably have more IBD online friends on Facebook than I do of my close friends and family.

Of course, when I am in the groups and pages I talk to other people and post about issues I have with my CD. Sometimes I answer other people’s questions. But one big topic that a lot of people in the real world ask…is should you be writing about your health on Facebook. I am reminded of a time when a fellow IBDer, Alyssa from www.loveformutantguts.com, was in the hospital and her family didn’t want her to post pictures of herself because they supposedly weren’t flattering to her. I remember doing a blog supporting her decision.

So why do I support her decision and where do I stand on the topic question? Well, first let me say your body is your body and you have the right to do or say what you want to and about it. If you are willing to share your health to other people and open yourself up to strangers..then that is your decision. Everyone has the tools to leave the site if they don’t want to read about it. Do I support Alyssa on posting the picture…most definetely. If that is what she wants to do..then so be it. Also, I think everyone with IBD should learn and see the bad side of the disease besides the good. Nothing should be hidden. I myself have learned to really open up and share a lot about my health online, not just on Facebook. I am a little more cautious on Facebook because I do have friends and family that maybe doesn’t want to hear or see some things about my disease. I try to censor my public posts so as not to offend anyone. But if I am in a private room (which most IBD rooms are) then I feel I can open up as we all understand the issues.

But what about loved ones? Well, are we talking about just mentioning our loved ones or are you an advocate for one. If my wife is sick, I won’t go on rants about it. I don’t talk about any of her problems because it isn’t my place. If she has some horrible disease, it is up to her to say what she wants about it, not me. Just like I wouldn’t want her to constantly talk about me without me knowing about it. But…if your and advocate for someone…that is a whole other story. I see so many people who are parents of little kids with IBD and they talk up a storm. But should they? If the kids are real young, shouldn’t they have some privacy rights? I think this is a very big topic. I am happy that there are parents out there looking to learn and share in the lives of their children and really learn about their disease. I sometimes wish my parents had done that when I was young..hell, I wish I had learned more when I was young. I was kind of lucky as there was no internet when I was growing up so my parents couldn’t tell the whole world about me. But if there was would I have wanted them to go online and talk about me and my disease without me knowing it. Probably not. I would feel a little violated. At the same time though, I know they would have meant well and were trying to find answers to help me.

Looking back at all of this..I realize I haven’t really answered the question. I think that is because I am torn on the answer. For myself..if I am comfortable with talking about my health and want to open up..then yes I should and people should just be happy with my decision. As for posting about others..I think there is a big gray area and I don’t know. Part of me says yes and part of me says no. I guess it is how they post and where they post about their loved ones. If they are in a private room where everyone is in the same boat and can really offer help and advice..I guess that is ok. Should they do public posts for everyone to see…maybe not.

Day 8 #NHBPM – Write about how you choose to write about others in your blog.

Nov8

Here is a topic that I have never talked about. In fact it isn’t one I had ever thought much about. Thinking back over most of my post, I rarely talk about my friends and family. Mainly I talk about myself. When I look at my life and my disease, I look at how most of my life I spent in solitude with it. No one in my family really understood what I was going through. I remember a time when I was a teenager when my parents were practically dragging me out of bed to get dressed and go to school. They couldn’t understand what I was feeling mentally or physically. I don’t hold this against them because in all honestly, there was no way for them to understand. I myself didn’t understand the disease. As far as friends go, I hid my disease from them. I opened up a little but never really let anyone into that part of my life. My wife…my rock…she is the only one that has seen me at my worst. She has been there for the good and the bad. And yet, I don’t mention her much. Hmmm, that has to change.

So, how do I choose to write about them. Well, the truth is that I don’t think about it. When a story comes into my head I write it out. I don’t think about who I am writing about. When I finally see a person appear on the screen, that is when I will stop and think. I don’t want to make anyone look bad on here. So when I do mention someone close to me, I will look at what I have written just to make sure it is all good. Overall though, I try to keep my post about me just so I don’t offend friends and family.

Now, as far as online friends. That is a whole other story. I have mentioned other people before. Honestly, I always feel weird doing it. I try not to put last names and sometimes I will not put a name at all. But some people are so big within the community that if I just put a first name you will know who I am talking about. For these people, I don’t worry. I won’t write anything bad about them, that’s for sure. I know some people don’t like to be mentioned and if anyone tells me not to say their name, then I won’t. I look back on the guest post from Sarah. She told me at the last-minute not to use her last name…so I didn’t.

As far as the content that I write, I just write what pops into my head. Sometimes nothing pops in which is why I can go a week or two without a post. But I never focus on other people for my blog. Overall, it is me and me alone that I want to focus on. Well, except for my Follow Fridays..but that is to promote other sites where the people have already put their name out there.

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 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.

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 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.

Find a quote and use it as inspiration – #NHBPM

Nov2

Day 2 – This is an easy one. I had previously posted about songs that relate to me and my dealings with Crohn’s. One singer that I find weirdly connected with is Kelly Clarkson. Her gripe is love, mine is CD. Both are a love/hate relationship.

So, the quote I pick as my inspiration comes from one of her songs – “What doesn’t kill you makes you stronger”. Now, I know she didn’t coin the phrase but I just relate to it so much more with her music 🙂 . As you know from my last post, I had it bad last year. I was in pain, couldn’t get out of the bathroom, was depressed and really didn’t want to continue. Looking back over the past year and seeing how far I have gotten, that pain really made me stronger. It helped me learn more about my disease. It helped me to connect with a lot of great people I would never have met otherwise. Most of all, the pain I had turned me into a health activist. A year ago I would never have thought about blogging.

I have talked about how many people helped to inspire me to do what I am doing. Truth is, they helped me on my recovery which was the first step. Without getting sick though, I would never have started the journey. In the past I was content to say “I have Crohn’s Disease. It’s an inflammation of the intestines that makes me go to the bathroom more than normal people.” That is it because that is all I knew about it. Now I can say “I have Crohn’s Disease but more specific I have Crohn’s Colitis.” I can go on for hours talking about my disease now. I have gained so much knowledge about it. I am on experimental medicine thanks to all the research I have done.

What doesn’t kill you makes you stronger. Such a powerful quote. At times last year it felt like I was dying. At times I wanted to die. Instead though, my disease made me stronger. Kelly – thank you for showing me that there is always more to life. I am a fighter and will never be alone now with my disease.

“What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone

What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone” – Lyrics from What Doesn’t Kill You by Kelly Clarkson