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

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

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

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

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

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

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

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

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

The Health Activist’s Writers Month Challenge – Day 10 Wordless Wednesday

Apr10

It’s often hard to like pictures of ourselves – post your favorite picture of yourself.

The Health Activist’s Writers Month Challenge – Day 9 Caregiving

Apr9

Patients, what advice or tips do you have for caregivers out there – professional or otherwise!

This is a good topic. It is so good that it is a repeat of one I did last year. So, I will pretty much repeat what I said in that post. Also, keep in mind that I am focusing on caregiving to someone with IBD.

First, and this is one of the most important things a caregiver needs to remember, is that the person they are taking care of has the disease, not the caregiver. The patient is most likely scared because they have an incurable illness. What they need most of all is love, affection and some sympathy. They are probably in constant pain and they might not ever feel “normal” again. It is your job to help them get back to normal as best as THEY can.

Second, listen to your patient. Don’t ever assume you know what they are going through or what they are feeling. If they say they have pain, believe them. Sometimes they may seem alright, but mos of the time there is pain within their gut. Think about how you feel when you have a sunburn. Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched.

Next, don’t try to force feed them. An appetite is a tricky thing for someone with IBD. One day they can be nauseous and not want to eat. Other days, they will want to pig out. Some of this is caused by the disease, some of it caused by the meds. Also, they are going to find that there are a bunch of foods that don’t agree with them. If they want to try a specific diet, let them. If they say they can’t eat a certain food….believe them. Don’t try to make them eat something because it is healthy. Not everything healthy is good for someone with IBD.

Your patient is not going to like the medications that they are on. If they are taking Prednisone, there is a good chance that they will get some depression. You should know right now, they will gain weight. Their face will swell up and this is called a “Moon Face”. Just let them know that it is normal, they are still beautiful and handsome, and that it is temporary. One day they will come off the steroid and their weight will come down. Now, sometimes if they are in a flare, they might lose weight. Try to give them some supplemental foods like Ensure to help maintain their weight. Don’t ever mention how skinny they look. They know they are losing weight and don’t want to be reminded of it.

My last advice I can give is never ever ever say they are sick. They have a chronic illness that will be with them their whole life. They know how they feel and they want to try to look and act normal. To them, it is something that is now part of their life. To them, being sick is like catching a cold or a flu. Having IBD doesn’t mean your life ends…so why should they think they are sick. Treat them as you would treat anyone else. Play with them. Talk with them. Give them hugs and kisses. Let them know that their life will move along and that they have nothing to be ashamed of.

And if ever you have a question, don’t be afraid to ask. Ask a doctor. Ask the person you are giving care to. You can ask me. There is also a huge community or people with their condition online. Turn on your computer and look for them. They will accept you and your patient into their family with no questions asked.

You are now about to embark on a great journey. Enjoy the ride.

The Health Activist’s Writers Month Challenge – Day 8 Animals

Apr8

If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe?

If my condition was an animal, it would have to be a grizzly bear. Looking at him from afar and it looks so cute and cuddly. It minds its own business and goes along its day having fun and enjoying life.

Grizzly bears are looked at to be carnivores but are really omnivores. My crohn’s is the same. I look like I eat tons of meat but the truth is that my crohn’s like to feed a variety of foods including fruits and veggies.

Grizzly bears have become iconic to the point that we buy little “Teddy Bears” that tend to represent them. When you see pictures of these bears, you just want to hug and cuddle them and that is how my CD is. Most of the time you just want to give it a nice hug.

But when a grizzly get’s mad, look out. To protect their young, they will stand tall with outstretched arms and give out a roar. They will do all they can to scare you and that is just how my Crohn’s is. On the bad days, I will feel like I am dying. My disease will make noises and it will feel like it is standing up inside me trying to rip itself free from my body.

Now, since I want to focus on the cuteness of it all, here are some pictures of one of my favorite animals.

The Health Activist’s Writers Month Challenge – Day 7 Sensationalize!

Apr7

Share a ludicrous headline or cure. Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it. Can’t find one? Write your own.

Bone-marrow transplant cures girl’s inflammatory bowel disease – http://www.theglobeandmail.com/life/health-and-fitness/health/bone-marrow-transplant-cures-girls-inflammatory-bowel-disease/article6177105/

This article I found online from The Globe and Mail which is a site based in Toronto Canada. To quickly sum up the article, a 4-year-old girl was suffering from numerous health issues, with IBD symptoms being one of the problem. Doctors say she had some form of IBD, but didn’t respond to any treatment. After doing some test they found that she had a rare mutation of her interleukin 10 receptor which is the body’s off switch for inflammation. The way to cure this problem was to do a bone marrow transplant. When they did this, they found that she was cured of her IBD problem.

Now, I don’t say this isn’t a true story. I am sure this little girl is real, was suffering, and is now a lot healthier. I am happy for that. But there are things about this article that I have to hold at length. First, the doctors say she had some sort of IBD but it seems like they don’t know what she had. My question is why not. I know we often get misdiagnosed, but the problem is usually a UC diagnosis that changes to CD. This girl didn’t even get that. So, I question did she really have a IBD problem or was it more of a body inflammation problem.

My second concern is that only 20 patients have had this procedure done. For me, that is to little of a group to start saying that this is a cure. For all we know, this little girl could just be in remission. But again, if the doctors don’t know what she has, how can they say she is cured.

Now I know there are more sensational articles and blogs out there. I chose this one because even though I question some of it…I think that there may be some truth to this and possible a real cure there. I guess I want to believe that there is real hope for a cure for IBD. Bone marrow transplants have become pretty common and I can only hope that one day we get it as a treatment and cure for IBD. The future right now looks a little brighter.

The Health Activist Writer’s Month Challange – Day 6 Letters

Apr6

Write a letter to your condition – what do you want to get off your chest?

Dear Crohn’s;

We have known each other for about 25 years now. We have had some good days and we have had some bad days. We have laughed together and we have cried. Well, this letter is to put you on notice.

I have learned a lot since the early days. I remember when we were first introduced to each other. It was at L.I.J. hospital and I was just a scared teenager. I thought I was going to be sick forever and then the doctor told me about you. After bothering me for the next 2 years, we called a truce and you left me alone for my college years. I was very thankful for that. What I didn’t like was that you never told me about yourself. You remained a mystery to me and I never really got to know you.

Flash forward many years to the year 2010. For some time now we were reintroduced and you have given me trouble, but I had learned to live with you. Then tragedy struck. Your cousin, Ulcerative Colitis, was very cruel and took my father in law from us. This hurt me very deeply. To add to the hurt, you decided to start causing trouble. For 2011, there was nothing but pain and despair with you. You were nothing but cruel to me. I wanted you gone once and for all.

Little did I know that the pain you were causing would help change my life. When you gave me my darkest days in January 2012, I would see my life change. Your cruelty would cause so much joy in my life. Something awoke inside of me and I decided to finally learn about you. I did my research and while doing that I got to meet some of the greatest people in the world. Not only do they live with your relatives, but they would be some of the most inspirational people I would get to know. They would show me that you don’t run my life but I do. No matter how hard you try to cause me problems, I would no longer let you.

These people you forced me to meet, and I am thankful for that, would give me the strength to fight back. They would show me that the foods you wanted me to eat were not good for me and my health, so I would change. I know you don’t like me being gluten-free because you won’t survive. Sorry, but I have to look after my health.

I know you loved all the meds I was taking because they didn’t seem to hurt you, only me. So once again, I am not sorry that you don’t like the naltrexone that I am taking. Those people you force me to meet, well they told me that this drug would be great for me and would maybe help you make the decision to move out. Sorry, I have to listen to them. You have stayed here for too long.

I know have learned what you are. I have learned that I don’t have to let you run my life. So I am putting you on notice. I know you will never leave me, but you have to leave me alone. I will not take any of your “crap” anymore.

Health Activist Writer’s Month Challenge – Day 4 Sharing Resources

Apr4

Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy!

I won’t say much here today. I am going to let my fellow activist to all the talking. So here are some links to some great people and great sites. Some you might know, others you are finding for the first time. Enjoy.

Inflamed and Untamed – www.inflamed-and-untamed.com

Blood, Poop & Tears – www.bloodpooptears.com

The Great Bowel Movement – www.thegreatbowelmovement.org

The United Colon Blog – www.ucvlog.com

I Have UC – www.Ihaveuc.com

Girls with Guts – www.girls-with-guts.org

The Crohn’s and Colitis Foundation of America – www.ccfa.org

Love For Mutant Guts – www.loveformutantguts.wordpress.com

Intense Intestines – www.intenseintestines.org

Chronology – www.chrohnolgy.com

Karen Langston – Mind, Body, Soul – www.karenlangston.com

Crohns Disease Warrior Patrol – www.crohnsdiseasewarriorpatrol.org

My Journey With Crohns – http://www.myjourneywithcrohns.com

The Crohn’s Diaries: Living Sick with Inflammatory Bowel Disease – http://livingsick.com/

There are so many more that I could put down, but I would be typing for days. So go check out these sites and from there you will find many others. Have fun and let them know how you found them.

“Ah The Sweet Nectar of the Gods”

Mar8

Every morning I think this as I take my first sip of coffee. Ever since my days working in Starbucks I have had a love for coffee and I look forward to it every morning.

But this post is not about coffee. Today, this phrase will be said about another liquid, a liquid that has been around for centuries. This liquid is used in every culture in one form or another. It is so old that it is even mentioned in the Bible, I believe starting with Noah. He drank this after he found land when the flood receded. This sweet nectar is of course wine.

A couple of months ago on Twitter someone wrote that wine seemed to help their Crohn’s. For whatever reason, whenever they drank wine, they felt better. Another person and I started joking about it but it got me thinking. What if there is some connection between wine and IBD. What if drinking a glass a day somehow could reduce symptoms and help.

By now most people know of the health benefits of wine. We know they have tons of antioxidants.

“Antioxidants in red wine called polyphenols may help protect the lining of blood vessels in your heart. A polyphenol called resveratrol is one substance in red wine that’s gotten attention. Resveratrol might be a key ingredient in red wine that helps prevent damage to blood vessels, reduces “bad” cholesterol and prevents blood clots.” – http://www.mayoclinic.com/health/red-wine/HB00089

Lower Your Cholesterol

Alcohol also can have a very powerful effect and increase HDL “good” cholesterol by 20% if used moderately and in the context of a healthy diet along with regular physical activity, says Rimm. Higher HDL levels are linked to lower risks of heart disease.

“The research evidence points to ethanol, or the alcohol component, of beer, wine, or spirits as the substrate that can help lower cholesterol levels, increase ‘good’ HDL cholesterol,” he says.

Boost Your Brain

A recent study shows a boost in brain power for women who enjoy a little alcohol. The study, published in the Jan. 20 issue of The New England Journal of Medicine, evaluated more than 12,000 women aged 70-81. Moderate drinkers scored better than teetotalers on tests of mental function. Researchers found a boost in brainpower with one drink a day. Moderate drinkers had a 23% reduced risk of mental decline compared with nondrinkers.

source – http://www.webmd.com/food-recipes/features/wine-how-much-is-good-for-you

Now of course as you can see, none of these studies have anything to do with IBD…so I decided to do my own experiment. I have never been a big wine drinker and when I do drink wine, it is usually white wine. Over the years though I have wanted to get into red wine so now was a good time to start. I have a bunch of reds just sitting in my apt. Many were gifts that I received and of course never drank. So I took one that was supposed to be really good and cracked it open. (Yes it was really good..best red wine I have ever had) I limited my self to only one glass per sitting so it took about a week for me to finish it. Funny thing happened…I started feeling better. I had been having a flare and it was now going away. My trips to the bathroom were slowing. Could it be the wine was actually helping. I decided to go a couple of days before my next bottle.

In the non wine days, nothing bad happened but I didn’t feel like I was reaching some great breakthrough either. So, crack open another bottle. This time I started spacing out the days I was drinking it. There were days I just wasn’t in the mood for it, other days I had work to do and didn’t want to drink that night. So it started to become a rarity that I was drinking and I have to say, I have started to feel bad again. The past couple of days I have had some depression. My bowel movements have increased again. I have been having some pain in the mornings.

So this up coming week, I will try to drink more wine again and see what happens. It is hard to believe that something that is so simple can be a big help. I will keep you updated on how the experiment is going. If I start to feel better again, I might start actually keeping a journal to document this as it might be a real worth while experiment.

Today is Friday. It is snowing outside. It is cold. This week at work has not been good. I can think of nothing better than ending the night and week with a little libation. Let’s raise a glass of vino to our health and hope that maybe one day we can all literally drink our troubles away….or at least our diseases.

Gluten Free Beef Stew

Jan28

It’s been awhile since I said I would post recipes so, here is another gluten-free recipe which is pretty IBD friendly..or at least for some IBDers.

Being that the temperature has been in the 20’s and I have been freezing my butt off lately, I wanted something that would be satisfying and warm me up. I was getting tired of my usual weekly menu and needed a change. When I was online one day, I saw a recipe for beef stew for a crock pot and I thought, I don’t have a crock pot but I can still make the stew. So, I went out shopping, got the ingredients, and made way to much stew. But is was so worth it because it was soooo good. And the cold will be around for a while so I have meals for another day.

Now, for the recipe, I didn’t measure out anything and it made about 8 servings. This is a dish that exact measurements aren’t needed and you can add whatever you want.

Ingredients:

1 1/2 lb cubed steak
3 Carrots – peeled and rough chopped
6 Celery Stalks – rough chopped
1 Parsnip – peeled and rough chopped
2 Large Potatoes – peeled and rough chopped
1 Onion – peeled and rough chopped (pearl onions work well also and require no prep)
1/2 Frozen Peas
64 oz Beef Broth
2 cans Diced Tomatoes
Olive oil
Gluten Free Flour or Corn Starch

Take your steak and coat in either the corn starch or flour. I decided to use flour just out of personal preference. Heat oil in a large stock pot and sear off meat. You don’t want to cook the meat all the way through, just brown it. You are sear it to seal in the juices. Also, you can do this in batches if the pot isn’t large enough.

After the meat is browned and removed from pot, add onions and more oil if needed. Saute the onions until soft and translucent. If you are using pearl onions, do not do this step. They will be added at the end.

When the onions are done, add some flour to make a roux. Cook this for a couple of minutes until the roux starts to brown. Add carrots, celery, parsnip, potatoes, beef, and stock. Stir well. Add any seasoning you like. They can be fresh or dried. I added some basil, oregano and salt. Again this is to your preference. Bring the stew to a boil.

When it boils, reduce heat to a simmer, cover and let cook for about 1 1/2 hours. When the stew is done, add the canned tomatoes and peas. If you are using pearl onions, add them also. Bring back to a boil and remove from heat. If the stew is still thin and not to your desired thickness, make a cornstarch slurry to add to it to thicken it up. Serve with some nice crusty bread.

My Take on the Escape The Stall Ads

Jan11

Yesterday I read a blog by another blogger, Marisa, which can be found here. This lead me to a post written by Sara found here.

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/). The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet. It is great to have another face to the disease. I am also very happy that the CCFA is finally putting ads and stories out there nationally. IBD is usually talked about quietly in dark corners. CCFA is now bringing out into the open and I am very happy and thankful for that.

I had read the reason for why they went with this campaign and at first it didn’t bother me. I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD. Crohn’s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that the CCFA ads are not a good idea.

So many people with IBD are sick. They have no energy. They can’t do simple things like get out of bed. Some people are in constant pains. Belly pains, joint pains, muscle pains…just overall pain. There is nausea, fevers, rashes, and eye problems. We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer. Many people with IBD have numerous scars from many surgeries. Some people spend months in a hospital bed hooked up to tubes. Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking, “Wow, people with IBD have it bad”. Well, yes we do. But looking at the new ads, all you would think is that we spend a lot of time on the toilet. When people put out ads for cancer we see bald people hooked up to chemo. When there are ads for emphysema we see broken down people hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible. So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot. Help them out”. I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease. Where is that fact in the ad.

I am grateful for all that CCFA has done and continues to do. I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis. But I have to say that I am shamed by their new and first national ads.