I heard THIS recently. Amazing, beautiful, beyond relatable and heartbreaking. Phetote Mshairi has expressed in just over two minutes and thirty seconds the true horrors of what living with Inflammatory Bowel Disease is. Bravo! If you, or someone you care about has IBD, I implore you to listen.
Feel free to enjoy the soulful vocal stylings of the fabulous Ms. Christina Aguilera. Yes, I know “Fighter” is about a man who did her wrong, but I think it also speaks to those of us living day to day with Inflammatory Bowel disease, or any chronic illness warriors. I have lots of other songs that could go in this category playing in my head. Must make a Crohnie mix tape for y’all! (For all the kids out there I hyperlinked the words “mix tape” to a Wiki page that can explain to you what they are and how rad and awesome they were.)
After all that you put me through,
You think I’d despise you,
But in the end I wanna thank you,
‘Cause you’ve made me that much stronger
Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter
Keep fighting IBDers!
~BOTB
NOT!
First of all, I am one sarcastic belle. (Obvious coping method.) This is what accounts for the title of this post.
There is one four-letter word that starts with a “c” that really infuriates me to the core… CURE. What other word were you thinking I was going to say? No self respecting southern belle would never even think of that other word. Y’all got dirty minds. 😉
Anyhoo… I wake up to find this video on Facebook.
http://video.foxnews.com/v/2207487074001/cure-for-crohns
O.M.G. As we say in the South, “bless his heart.” (That’s not a good thing.) Where to start! Ari Meisel seems like a good person and I am sincerely happy that he has found something that works for him. But here comes the but. BUT don’t tell me you are “cured.” THERE IS NO CURE FOR CROHN’S DISEASE. I repeat: THERE IS NO CURE FOR CROHN’S DISEASE. This young man stopped smoking, ate less fast food, reduced his stress and had had been on strong Crohn’s fighting drugs. Yeah, I am sure this is how he was “cured.” Why didn’t I think of that! Stoopid, stoopid, stoopid me! Glory be! I must want to be sick.
I made this meme a couple of months back and I think it really speaks to the topic. Please note that herbs, acupuncture and hypnosis can be scientific and sometimes successful treatments for Crohn’s disease. Just please don’t use the word “cured.” There is where I have the problem.
I have tried lactose and gluten free diets, nutritionists, hypnosis, Doctors of Osteopathic Medicine (D.O.), vitamin therapy and I’ve even been to faith healers, among numerous other off the grid treatments. Nontraditional and traditional therapies have done little to help me. Just please don’t use the word “cure.” People look at someone that has been so deathly sick as I and think, or even tell me pointblank, that I could be healthy if I really wanted to… if I would just “put in the work.” (Someone actually said that exact phrase to me not that long ago. She also believed all cancer could be “cured” with similar “work”. I don’t normally confront people when they speak such uninformed garbage, but that time I did… and it felt SO good. lol.)
Okay, Mr. Meisel (with what very much appears to be a somewhat mild to moderate case of CD) claims that the holistic treatments he has used and ceasing smoking have caused his “cure,” not the powerful drugs he was on previously. Please! Is it just me, or does he physically not look very healthy? (Pasty and his eyes look sunk in and sick.) Maybe he is having a common reaction to serious disease, denial? I would love to see follow-up stories in coming years and finding out how all this is working out for him. Oh, and I can’t seem to wrap my mind around this “art of less doing” thing. What the heck?! Stress can make illness worse? What a concept! Duh! “Optimize, automate and outsource” everything in your life. Huh? Makes me think of a cramped, cubical strewn office in a third would country where people are being paid 20 cents an hour to manage my life and disease. If I wasn’t so morally opposed to such things I might have asked for the contact info on this service. I wish they would never even mention stress in reports that so many of the general public see. It takes our plight of informing the public that IBD is NOT a disease of the mind back years. What saddens my heart to the core is the effect this kind of gross misinformation has on newly diagnosed and young Crohn’s disease patients. We are all living on the hope that this horrific illness will be cured in the near future. I am certain Ari Meisel is a good person and just wants to help others feel as amazing as he claims to now, but information like this does nothing in making our way to this most greatest hope.
What more can we really expect from Fox (Faux) News. Pfft! (Sorry, not a fan.) I guess they didn’t see the Obama sticker in that doctor’s office or they never would have ran the story. lol.
~BOTB
Starting a blog in the middle of a move is a STUPID IDEA.
That is all. Hope to be back soon. ~BOTB
No 13 year old wants to find out they have a very serious, incurable, chronic illness, but I was so relived to finally be getting some answers and that I was not crazy.
I don’t remember the exact date, but I finally got my diagnosis of Crohn’s disease 23 years ago this month. After years of childhood illness, countless pediatricians, 2 pediatric gastroenterologist, hospitalizations and even an emergency blood transfusion, we at last had an answer. My family and I were more than ready for a diagnosis, any diagnosis. Even though I knew virtually nothing about Crohn’s disease I was just happy that I wasn’t crazy, and I now had proof. I had the overwhelming urge to rub this information in the face of people, inside and outside of the medical field, who thought my condition was psychosomatic. IN YOUR FACE! BOO YA! (Too much?)
Just a month after my diagnosis in 1990 I celebrated my 13th birthday. We were happy to have answers, but this was just the beginning of my fight. I weighed 70 lbs. at the time of my diagnosis. I HATE Prednisone, but it saved my life in the the beginning. I actually doubled my weight in just a few months. I spent 6 YEARS, my ENTIRE teenage years on high dose Prednisone. Just what every teenage girl wants; a moon face, mood swings that make PMS look like a country picnic, acne, hump back, etc. I think I should have gotten an award for all of that. Seriously, where is my award? At 19, I finally successfully got myself off the Prednisone. I remember feeling so accomplished when I made my goal of being steroid free (another reason for that award). I did it so very slowly and it took me close to a year to get completely off of it. A few years ago Jerry Lewis went into drug rehab to get off of Prednisone. Some people thought that was odd, but not me; it’s hard stuff to come off. What a love/hate (mostly hate) relationship we have with steroids!
I was not planning on writing that much about Prednisone. Same thing always happens at support group. Some meetings can end up being no more that a flippin’ hate Prednisone rally. My mind went there organically today, so I guess you just have to go with it.
Blessings of health to all!
~BOTB
I have always believed that the very first post in a brand new blog is the hardest one you will ever have to write. It should be something unique and powerful. Like the first line of a good book, you have to grab those readers before they ever even knew what hit them. That being said, I have been pondering this post for a couple of days and I have absolutely nothing. Instead of the razzle dazzle, I will just tell you why I started this blog.
This blog is my thoughts on being a nearly lifelong Crohn’s disease patient. Crohn’s disease is one of the two forms of Inflammatory Bowel Disease (IBD). It is an autoimmune disease that causes my own body to reject and attack my digestive system. Many people ask how it feels to have active Crohn’s disease. Think back to the worst stomach flu or food poisoning that you have ever had. Now imagine waking up feeling like that not just for days or even a week, but feeling that way for months or years. This time last year I could never have started a project like this. My whole body was completely concentrated on survival. I was being fed through an IV for 12 hours a day and coming to terms with the fact that I would indeed have to have a seventh major surgery on my small bowel. I had my surgery in May and am finally feeling like I’m coming out of the survival mode fog. If my history is any indication, the fog could fall upon me again at any time. I do hope my awesome fellow IBD survivors enjoy my blog. The selfish truth is that I really need to share my experiences when I feel capable of doing it. I love to write, but my brain turns to mush when I am sick. I need to get a lot of this out of my system in case “mush” overtakes me once again. Mush brain does not RSVP and can show up at any place at any time. With a fresh new year, this journal gives me something positive to think and act on. There are so many amazing blogs, vlogs, social network sites, etc. for folks with IBD. Because of that, this blog does seem to be quite redundant to me. Oh, well. I came up with such a clever alliteration for the title, Belle of the Bowel, how could I not start a blog! I was first going to be The Countess of Crohn’s, but BOTB is so much more me. (Please know humor and sarcasm have been some of the best medicine I have found. If you have no sense of humor; this may not be the right blog for you. Thanks for stopping by!)
Being trapped in a pirate’s booty chest is exactly how it feels to have a serious chronic illness. The mind and soul want so much, but the body screams out, “HELL NO!” (Ironically in a pirate voice. ARRR!)
I’m still trying to find my way through WordPress, so I hope to post much more very soon. As any good southern belle would say, “y’all come back now, ya hear!”
~BOTB
Belle of the Bowel 