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| Erin Coward - Georgia Straight photo |
You can read the article at: http://www.straight.com/article-374700/vancouver/awareness-brings-end-suffering-silence
We really appreciate all the kind comments from all around the world and hope this will be the start of creating a support group in Vancouver!
Erin says:
Thanks again for all the support and sharing your stories with me and others. I have been sick for over a week and I'm sorry for the late response. I hope in a few months we may be able to collectively, if your comfortable that is, come together and create our own support group. Maybe even meet face to face and help each other deal with our suffering.
I can tell you I have been through the ringer. Just came off all my opiates and have been dealing with an Endo attack with no masking of the pain for the first time since I was 18. It has been extremely scary and painful, but I was on so many meds and it was time for me to look at alternative ways of dealing with my pain again. This is not easy for anyone. I can tell you, I've cried everyday since stoping the drug therapies. Many people who have been present this week say they can see a different person in me since I've stopped taking the drugs and I see it too.
I know this is not a complete long term option because the pain is so sever, but I'm at least going to try and make a go of it. I have a great support group and wonderful friends who have been there this week encouraging me on. I guess this is going to be a new journey for me. I know I can't control the pain, but maybe through alternative medicine I can find new ways of trying to make peace with my pain. I guess i'm ready to feel now and not be doped up all the time. There is no other option for me I can't return to the ways I've been coping, because it was too deadly and made me a whole other person. If you can find the strength to do it, please try. I can tell you from the deadly experience I faced, sometimes drugs aren't the answer.
It totally sucked going through this last week. What has kept me motivated is that I'm not alone and hearing all of your stories. If you say to yourself you can do it, you can do whatever you set your mind to do. I've been telling myself this all week. I can do this. I can fight this. My grandma Ellen, if she were still alive would be incredibly proud of me and as we all use to tell her, "Your a tough old bird," I can now say I'm a tough young bird for trying this.
Please keep going and maybe one day we won't have to be in so much pain and suffering. Maybe one day there will be answers. We can only get these answers if we all keep pushing for them, so don't give up, find the strength to push through your pain. The answer is out there, we just have to find it and we can only do that by sticking together and not giving up.
Erin
Just read the many moving comments about this article on the other posts on End Endo BC - thanks to the Georgia Straight and Gail Johnson for bringing attention to this painful and misunderstood illness
ReplyDeleteI read anything to do with endo everyday from google news. I was pleased to find your article. Sadly enough it seems people do not care about this disease because males do not suffer from it. Once infertility comes into play, then people care a little bit because of breeding. But it seems that us women are left to suffer because we are not as important. I've suffered with many surgeries, awful treatment plans and like you hemoraging on a street corner. Nothing really works. Why doesn't anyone take care of a disease that we only refer to as cancer when it kills you? Thanks Dixie Carter.
ReplyDeleteI wish you health and strength.
Thanks so much Erin, for starting this up! Yes, opiates have their place when things are really unbearable, but I agree, ultimately it doesn't solve anything and the side effects are in some ways just as crippling as the pain.. not to mention they are addictive, and become less effective over time. I know when I had to take them, I'd just give up and be a zombie for three days, trying to sleep through the ordeal. I've been able to improve things a lot for myself by drastically reducing the sugar, wheat and dairy in my diet. As long as the "yum" factor is still there, it's actually been pretty easy for me to switch, and I've been getting by on NSAIDs and Tylenol since, for the most part. I've also managed to find out how to make some truly decadent and delicious foods that heal instead of hurt.. such as, believe it or not, chocolate cake (made with organic cocoa, oat, barley and spelt flour and sweetened with apple sauce and stevia, and iced with coconut butter icing.. I'm not kidding: it's soooo good. Amazing, the difference a good quality stevia makes..). I'd be happy to share more about this, and recipes if anyone's interested. Also, a ton of information about alternative approaches to endo can be found at www.endo-resolved.com, which is also written by women with endo.
ReplyDeleteThanks, Giselle
Hi again,
ReplyDeleteAnother thing I forgot to mention that has been helpful for me has been NAET therapy, which is part energy medicine, part acupressure, and kind of an allergy treatment. Has anyone else tried this? Another thing I've found helpful myself is Mayan Abdominal Massage and herbs.. you can find a practitioner, and the herbal remedies through arvigo.com. There is also Pelvic Floor Physiotherapy that can help by treating the internal connective and supportive tissues and muscles that can become chronically tensed against the pain, which often makes it worse. I have not tried this myself but have heard from other women with endo that it helped.
We are all different of course.. in my case, none of the hormone meds prescribed by my doctors helped at all, in fact, I got extremely sick on them and was hospitalized for 5 weeks from the damage they did to my system. Chinese medicine, acupuncture and naturopathy did not help me either, but the NAET, diet changes, abdominal massage, and Brazillian herbs have. I am not by any means out of the woods yet, but it is getting better. I hope everyone starts healing and feeling better soon!
Giselle
Hope you feel better soon, Erin.
ReplyDeleteSending love from the UK!!!!
Great article! I would love to join a support group here in Vancouver too. I'll email my contact info.
ReplyDeleteIn case anyone who is reading this is also struggling with infertility, I would like to recommend a Canadian website: www.ivf.ca. It's a great resource and place to get emotional support. Many of us have endo and exchange information there.
Erin,
ReplyDeleteYou are not alone. Thank you for being brave and taking part in the Georgia Straight article. Dr. Williams has been one of my angels for a decade now and, as it took 3 decades to find her, I know she is a genius and a gem.
I took part in the HEROES show during the Paralympic Games, exhibiting two paintings that express how it is for me to be disabled by Endo, you can check out my artist's statement on my website:
rosewarriorarts.com
Great idea for some of us in Van to get together and share resources for pain management and ways to cope with this incurable disease.
take care,
Rose L.
Hey Erin,
ReplyDeleteFantastic article, I can relate so closely with it.
I'd like to be a part of the support group if that's possible. I'm all the way down here in Queensland, Australia.
Keep smiling.
Girl in Baggy Greens