Most people who know me or read this blog know me as a dollmaker, an artist or a sculptor......even a bit of a gardener.
What most people don't know about me is that I live with an auto-immune disorder called Crohn's Disease, having been diagnosed in my late forties. Quite a lot has been discovered about Crohn's in the past ten or so years, but what causes it or how to cure it are things that are still not known.
The genetic marker for Crohn's was found a few years ago (hla B27+) - the same genetic marker that in other people causes rheumatoid arthritis, I believe. In people with Crohn's the disease is manifested in various different ways, probably the most severe and debilitating is the ulceration that can occur in any section of the digestive tract, leading to some very nasty complications. It is
this kind of severe ulceration that leads many sufferers, myself included, to require major surgey to remove sections if the intestinal tract. But it can also affect the liver, skin, eyes, joints and other bits I don't know about.
I count myself as quite fortunate - incurable condition notwithstanding - because after surgery in 2003 I have been relatively symptom-free, bar the occasional "flare-up" and I can mostly live a fairly normal life. In fact, most people who meet me casually have no idea that I live with Crohn's (even if they do know what it is).
I decided, after some thought, that I should post about Crohn's, because it is important that people understand about such things, I think. So I hope you don't mind me using my blog to raise awareness of a very debilitating condition that many people live with. If you are interested in finding out more, a quick google search will yield scads of information. Thanks for bearing with me!
I am a maker of dolls, sculpture and other art. This blog is about my daily journey.
15 comments:
...I'm so sorry and to have to go thru surgery as well, my heart goes out to you.
...My sister-in-law has Crohn's Disease and she seems to manage it okay. She seems to have flare-ups but has never required surgery, yet.
...I know it is up to us that are battling these illnesses to speak out and give the illness a face and a name but like you it is something I'd rather not discuss. I too battle an autoimmune disease, it is called Scleroderma.
...Thank you for bringing this out in the open. Sadly, other than a celebrity getting one of these diseases they are rarely heard of or discussed.
...Wishing you all the best and a lovely weekend too.
...Peace & Blessings :o)
I am very familiar with Crohn's disease. My husband was diagnosed in his mid 40's, he is now 64. Fortunately he has never required surgery, and has managed a fairly nomal lifestyle. I understand this disease can be very devastating in young people. Many people have never heard of Crohns. Thanks for talking about it. Best wishes to you.....I am a huge admirer of your wonderful dolls.
Hello Susan!
Wow, I have an even greater respect for you than I did earlier; a friend of mine also has Chrohn's and there are days...many days, where she can't even leave the house, doubled over in pain in bed. This even with medication.
So how you get as many things done as you do is beyond me. Blessings to you and I hope you are not having too hard of a time of it.
I also have a friend with Crohn's, and the aspect she has the hardest time with is the depression caused by her battle with the disease. I hope that you are not dealing with that as well. Thank you for sharing! God bless.
Thanks for sharing as it does helps us understand you better. I admire anyone who who has the strength to rise above there difficulties. You are in my thoughts.
Susie - I think it's important to share these things. I share about autism quite a bit. I know that not everyone enjoys reading about it, but it's part of who I am and the very reason I sell work online is because I need to work from home (no childcare options for outside employment).
Someone who has Crohn's will read your post and not feel so alone. And someone else who has it but doesn't know it will go see their doctor and find out ways to manage it.
Sending a hug from the US to Australia. :-)
I think it is important to talk about it too. Seems to me there are a LOT of people with Crohn's and it distresses me greatly to hear of people whose bodies are fighting themselves. You are very brave, you may not think it, but yes you are. See you Sunday x
Susie,
I'm so sorry to hear you have this challenging disease! I knew you were a strong woman, but now I see where that strength comes from. To see you continue to work and create such amazing things is a sign of that strength. Kudos to you for talking about it so candidly. Your forever fan,
Bonnie
There have been major advancements. It was hardly know when my mom was diagnosed after three years of different doctors and such.This was back in the late seventies. She managed it most of her life by taking medicines and maintaining a strict diet. I hope you are maintaing well with it and have the advantage of these advances in medicine my mom didn't have.
Kudos to you a brave woman!
hugs Karen
I too suffer from an auto-immune condition. Most of the time no one would know I have any issues. You are a wonderful, strong women. Thanks for raising awareness!!
so sorry to hear this Susie, your creativity must be a blessing to you always but particularly when you are not well.
I've actually been thinking about you a lot recently and as a result I'm sending you an award for your blog from my blog. Have a great day and keep on keeping on. TFS
Susie, thanks for sharing and raising awareness of this dreadful disease. I was already in awe and admiration of your work and amazing productivity, but now knowing that all this is achieved under sometimes very difficult circumstances, makes you even more admirable.
Thanks for all the warm thoughts my dear friends. I haven't responded because I have been away.......at string camp playing my violin with 150 other musicians, which is one of my greatest joys. But I did get carted off to hospital in the middle of the week just for a night when my heart started going haywire and needed stabilizing - that was NOT fun. (The beta blockers they gave me sure helped at the chamber music concert where I played in a quartet, though! Ha!)
Alessandra, just occasionally I get a bit down when my condition prevents me from doing something I want to do, but usually I'm pretty optimistic and happy. I've never been depressed that I am aware of and I usually just re-organize my life to accommodate the Crohn's, rather than getting too down about having it.
Yes, I have been dealt a fairly rotten hand - but there are people dealing with far worse things.
Thanks again for all the positive vibes......yuo guys rock!
What is it with we doll makers? Since 2008 I have been plagued with digestive issues as well. Doc thinks it's autoimmune but can't pin point it. Not as severe as Chron's. Sorry to hear you have been having flare ups. Stress does it for me. Stay well. Hope your felt arrived. Sue :-)
I'm getting back to the internet after a long time away so I just read this today. I too suffered for years with horrible GI issues and went through every test imaginable. Last October at the age of 52 I was Finally diagnosed with gluten intolerance and finding this out has changed my life. Your post has inspired me to do one of my own...a thought I've been "percolating" for awhile. Thank you dear and here's wishing you fewer flare ups and a healthy heart from here on out! ((hugs)) Cyn
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