http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me
A wonderful and personal article on living with autoimmune diseases.
I hope everyone is having a tolerable day. 🙂
~The Belle
P.S.- My review of the documentary and also my thoughts on the possibility of Kurt Cobain suffering from Crohn’s disease is coming soon. Also my thoughts on an article that Courtney Love gave to Rolling Stone magazine, which goes much deeper into the subject of her late husband’s health.
I am about to sit down to watch the brand new HBO documentary about the life of Kurt Cobain, “Kurt Cobain: Montage of Heck.” I have always suspected that this talented and tortured soul suffered from severe Crohn’s disease, and it turns out that it will be a large subject in this film. I will share my review of set documentary in a later post.
~The Belle
Can I really say anymore.
Dear Prednisone,
Yes, I am aware that you have saved my life on multiple occasions, including that time over well 20 years ago that I don’t doubt that your heroism brought me back from the dark brink at only 70 pounds, during a very long time battle for a diagnosis with Crohn’s disease that had already gone on for years. I am currently on more of you than I have ever been in my entire life (after spending painstaking months of getting off of your evil concoction) and I have never been so aggravated and tired of this disease more ever… thanks Obama (sorry, Mr President, you did not deserve to be brought into my own International dilemma, I know that you currently have more than your full plate on your table, bless you)… I mean thanks prednisone. After 30 years, I just want to feel better. With tears in my eyes, I wish everyone could feel the often unbearable pain Crohn’s disease can usher into your life, just for one day. After this and yet another hospital stay, this is getting more than a bit frustrating. Please pray that I can get new drug approval on Friday when I see the rheumatologist. With all of my major issues and treatment failures this is the end of the road medically for me, until a new drug or treatment is found. Hope does spring eternal, so deep inside I know there is an answer out there. For all of us. I am sure much of my melancholy comes from the fact that it is just about exactly 28 years since I finally got my diagnosis of inflammatory inflammatory bowel disease. Dum, dum, prednisone, you may be part of my life now and maybe in the future, but not eternally! (Now must keep repeating that in my mind… along with the theme from Rocky. Kids, never ever forget the theme from Rocky. Google it and thank me later.)
So take that, prednisone!
Yours (not so truly),
Belle of the Bowel “Meghan”
Bangs, not a good choice of hairstyle when you look like a cupie doll.
Time hoppin’!
Woo hoo! Happy 1st birthday to my Power Port!
I have read on many IBD support pages inquiries on port-a-caths and whether or not they should consider getting one. Let’s face it, kids, our veins are not always the best. I often find myself in an elevator, or in line at the bank and become filled with jealousy when I spot an arm and, or, hand with awesome juicy veins. Lucky! (Yeah, like that’s completely normal! LOL!) When it comes to long-term lines, I’ve pretty much had them all; PICC lines, midlines, Hickman’s and have even had short term lines, such as of the peripheral variety in my feet. I can stand being stuck for an IV about three times, but after that I completely lose it. It’s not the sticking part for me that give me a lot of pain and the heebie jeebies, it is the digging around trying to find a vein that is the real torture. Trying to explain to a nurse that I would much rather have him or her stick me again then going “gold mining” for 15 minutes can be quite the challenge. The funny thing is that many nurses first comment is that my veins, “don’t look that bad.” (As we say in the South, bless their hearts!) Six sticks later they are eating their words. My veins, like myself, are an enigma. (Just a fancy way of calling myself wacky.) lol.
The bruising of multiple failed IV attempts can make you look like you are in a tragic abusive relationship, or like Julia Roberts in that “driving nails in your arms” scene from the film Steel Magnolias. I can’t begin to tell you how many people have mentioned that scene after looking at my arms.
This is why I celebrate my port-a-cath today, and everyday. This is actually my fouth. The longest that I have had one in is seven years, and all of the others were in for years at a time, too. That’s because this Belle has mad sterile technique, yo! I have had two port infections in the 20 years that I have had port-a-caths (both, caught in the hospital, through no fault of my own), so they are definitely carry a risk, but studies have shown that the rate of infection is much lower. This is because, unlike a PICC line or a central line, when you are not using your port there is nothing hanging out of you to get infected. The port-a-cath is under the skin and you don’t even know it’s there.
My port in all of its glory! I was looking for a off the shoulder Flashdance kind of look. I had to skip that iconic scene where Jennifer Beals pulls that chain and she is doused with wateer, because I can’t get my port-a-cath wet.
My poor little port-a-cath has gotten quite the work out lately, due to the fact that I have been on TPN (all of my nutrition intravenously) for the last couple of months. As always, please consult with your doctor concerning which option is best for you.
~Meghan, Belle of the Bowel
This was number six of seven of my major bowel surgeries. I remember it being especially scary, due to the fact that number five almost took my life. If I didn’t have such vigilant parents that recognized before my hospital medical team that there was something drastically wrong (my mom even had one of those “Terms of Endearment” moments at the nurse’s station), I am positive that I would not be here. Thank God all went well with the surgery mentioned in this Timehop. Other than the cold/flu delay and yet another slight delay; this time thanks to a nasty wasp bite reaction. The waiting was so frustratrating, but all went as well as it could and I thank for that.
-Belle
Yes, I still fully intend and personally need to write on guilt and IBD, but this Timehop from five years ago today hit hard. This was a scary time because my previous surgery (numero cinco) quite nearly took my life. It was later determined that was mostly due to the extremely poor physical state of my body when I had my fifth surgery. That is why TPN was started. I did the same before my seventh surgery also, and, thank God, the devastating complications that plagued my fifth surgery did not occur after either of my later two major bowel operations. Currently, TPN has been brought up again. Does that mean I will need the just five feet of small bowel I have left hacked on once again… who knows? I am currently awaiting approval for a brand new drug (with the help of God)… and that does give me hope. Hope of getting off of this wicked, never-ending carousel that is my 30+ year battle with Crohn’s disease.
This was my sweet little Nummy Muffin that I mentioned in my Timehop post. After a long life she has very sadly since passed, but she was always the best little kitty. She never even came near my TPN tubing and was always my best nurse.
Love to all!
-Belle
but I am just too physically, mentally and spiritually exhausted to post on a subject that is just too important for me to fumble through in these wee hours. Here is a preview:
I pray this Belle will feel like explaining more tomorrow, or at least within the next six months.
For the two people that maybe check in on my tiny corner of the internets every once in a while; I thank you.
-Belle
Strangely, I was happy to have a low hemoglobin four years ago (and still do most of the time), because the blood transfusions work so much faster than the iron infusions for me.
And, yes, I had to have my seventh surgery a few months later. This came only after my doctor told me I would never eat again if I didn’t have yet another operation. At the time I was depending on TPN for all of my nutrition, so that was that. Over two years later, once again, I find two of my doctors recommending that I should go back on TPN feeds. Gee wiz, easy for them say! LOL! I have a huge family obligation this weekend and will consider it more thoroughly when I get back.
I hate going on long trips when I’m sick, but I am just going to have to smile and suck it up… yet again.
I hope and pray that everyone is doing better than I am.
♡ you!
-The Belle
Gee wiz. The Timehop app once again reminds me just how many times I’ve been hospitalized for my Crohn’s disease; this time in the ICU four years ago. Dad (bless him) brought my laptop and, thank God, I didn’t have a reaction to my blood transfusions.
I hope and pray all are well.
-The Belle
Today… well, really this week… well, really this life has been hard. I have so many blessings in my life, but miss out on so much I want to be doing. That includes blogging more than a handful of times a year.
I hope and pray that all of my IBD sisters and brothers are feeling better. You are always in my thoughts. Keep up the good fight!
-The Belle
Belle of the Bowel 