Saturday, March 3, 2012

Erin speaks out on Endometriosis!

It has been a tough start to 2012.

As most know from my blog I am a tough cookie, bring on the pain and I'll take it on like a trooper. I have never given up at any battle and leaving school is not something I am surrendering to that easily. Eight courses and a practicum is tough enough on a normal person, add three chronic pain diseases and it becomes an impossible trek up a steep mountain with obstacles, powerful rain and sheets of snow. I had no choice but to stop climbing that mountain, it was not safe for my health.

Somewhere along that journey I seem to lose myself within school and the pain I fought daily that I barely recognize myself when I took a step back and left school. Getting lost in something you love is one thing but losing who you are because you lost joy in basic life, social and family and what about that time you reserve for yourself? It became too much. I had given up all for school.

Too many times had I been told: "How are you going to be a teacher since your sick?" The weight of it all, resting on my shoulders was too much. Its so hard to look up when so much stuff is bringing you down.

Well, I am still smiling and taking this in strides. I will not give up on what dreams I still have even if I may be sick and may never get better. Isn't true you look so much better when you smile? So, that's what I am going to do through all this. This is not the end, but the start of something else. I have to re define myself and find that part of me I lost.

School will always be there and I hope that someday I will return and find steady footing within it but as of now, I have to once again look at my health.

When you have three chronic pain diseases, everyday is a struggle. I struggle to get out of bed, to hold a coffee mug without spilling or dropping it and even the simple task of dressing yourself can exhaust you. I am not bitter about living this way, I'd rather live then be dead, so I keep trying. Keeping my head above water is the plan. Maybe I bit off too much to chew but one must always try and I had a dream and the drive.

March is the month in which we try and raise awareness about endometriosis and I hope all of you will do your part, wear yellow, share information with friends or sport a yellow ribbon.

Too many are affected by this terrible disease and too many of us are not being loud enough to bring attention to it when it affects one in ten women.

Please try and give a bit of your time this month to raising awareness. I know I don't want to live like this forever, but if it is in the cards I will make do.

What can I do?

When put in an impossible place or circumstance all one can do is dream big and believe that things can change, that one day the pain will be gone and maybe I will awake to a new world full of endless possibilities, all that I am free to partake in without carring around a disease that seems to single me out.

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18 comments:

  1. Hi! Thank you so much for blogging about this! Have you gotten into any other social media, like Twitter? Hope we can chat, what's your email?

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  2. I have suffered from fibromyalgia since I was hit by a truck in 2010 and also went through numerous pharmaceuticals and injections and nothing seemed to work. Just yesterday I was finally able to convince my gp to fill out my MMAR paper for a federal exemption to use cannabis which is the only thing that had worked without severe side effects. If you would like more info our help with the process please contact me. My name is Dylan Nickerson I am on facebook, my email is d_nickerson@live.ca and my numbers are 604-438-4313 or 250-793-2808. You don't have to suffer as much as they make you think...it is you're choice

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  3. I also suffer from Fibro and have gone through too many drugs and treatments to count. Yesterday my doctor filled out papers for me to be federally exempt to use cannabis and I have to say it it's the only thing that has worked as well as it does without the harsh side effects... If you would like more info or help with the process our just a different perspective on the condition itself please contact me. My name is Dylan Nickerson, I am on facebook, my email is d_nickerson@live.ca... You don't have to suffer as much as they make you think...it is your choice!

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    1. Thank you for your message.

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  4. Hy daughter started to suffer from endo from age 10 though it did not start to get really bad when she was 14 in 2001, just after we moved from Surrey to Los Angeles. She went through hell. Many surgeries to scrape it out, so many drugs and bad reactions, drug induced fibro and all the horror. ]I had to take over her treatment as the communications between doctors is just horrible. This is something that needs multidisciplinary treatment but the system is horrible at that.

    Eventually, her mother had a hysterectomy for her endo and it came down to either my daughter sacrifice her life and suffer for more years for persons not yet born or we clear it up and she can live a good life.

    It took two years to convince the system to do a hysterectomy. On December 16th at Vancouver Hospital. On December 28th she announced to me she was totally pain free. With no drugs.

    Now, 5 years later, at age 24 she is on a full ride fir her PhD in civil engineering at a top university in Pennsylvania, has a wonderful fiance who understands and more job offers for top money that she knows what to do with.

    It totally turned her life around.

    The doctors did not like the idea but really, they are not the ones suffering. I suggest that anyone who is suffering from endo bad enough they cannot work full time or go to school full time and who need strong drugs to get through every day that they should look at a hysterectomy and then getting on with life.

    Contact me if you want to communicate.

    Dan Fraser

    dmfraser951@yahoo.com

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  5. Dan I'm really happy to hear that your daughter is pain free but hysterectomy does not work for everyone or trust me we'd all be lining up to do them. Erin, I will definitely keep you in my prayers. I'm an endo sufferer as well, new to BC and would love to know who the doctors are that I can see. I just had my second surgery in November 2011 but the pain is still there. Would love to meet you. You can reach me at winterkist@yahoo.com.

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    1. Thank you for the message. I have seen many doctors. I have great respect for a lot of them. Dr. Allaire is my current doctor and has been working very hard with endo patients. She and her team have started information sessions that are free plus free therapy for pelvic pain and other support. She is at the UBC reproductive clinic which is at women's health center at women's hospital. I am working on my own project to start a positive support group. I hope to have it started in late April and if your interested to be a part of it or help me get it started, I would love that. Keep in touch. -Erin

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  6. I am an endo sister too. I just wrote a post about if only Disney made movies about our "fairy tale." I am about to have an oopherectomy (ovary removal) and am also considering egg harvesting in case I want children later. Stuff a 28 year old should not be doing. Sending yellow thoughts and yellow energy your way. Endo Awareness Month Day 7. Hug.

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    1. Thank you. Sending you positive healing thoughts-Erin

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  7. I have been suffering from the pain of Endo for about 10 years but was only diagnosed 3 yrs ago. The unexplainable pain for so many years was frustrating to say the least. And since I have known I'm frustrated that it took the Dr's so long to diagnose this common disease. I had my first surgery Feb 2011 and I was only pain free for about 5 months. I try not to take to many pain medication as Im aware of the adverse effects.

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  8. Hey! I was searching online a couple days ago and came across an article on a new pill called Visanne. It is specific for endometriosis. It only became available in Canada in the last few months. I'm talking to my doctor about it to see if it'll help. I send my sympathies because the pain is debilitating especially with other illnesses. We all need support and to raise awareness. :) thanks for sharing Cheers

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    1. I wanted to say first of all thank you for your support. I was one of the first to try visanne. I had terrible side effects. The drugs helped my endo but added other problems to the point where I could barely turn on the taps in the morning because my hands where going numb. It would last hours and I was dropping things all the time. I would say try it but be aware if there are changes or side effects to stop. I now have carpel tunnel since I stopped treatment. Please keep in touch and good luck.

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  9. Erin, I wish I had the internet so many years ago to connect with others that were going through the same nightmare I was. My hell started when I was 14, being hyped on narcotics, and being told all the pain was in my head. Schools wanting to expel me for my lack of attendance, passing out from pain, vomiting, spending weeks out of each month debilitated. It wasn't until age 19 I met my saviour Dr who sent me to a gyno that finally told me it wasn't ALL in my head and was real. I had endo, finally a diagnosis! Not that I could find information on it anywhere, or a diagnosis actually helped with pain, but thank god it wasn't it my head! Less than a month later, I had my first surgery. With many to come thereafter, along with drugs I would react to and so on. After a long and agonizing journey, 3 beautiful children later I just had a partial hysterectomy 4 weeks ago. I turn 39 next month and was counting down the weeks, days, hours and minutes until the item that plagued me was finally gone. Please know you are not alone, you will get through this, always keep your mind on your goal in life and never loose focus on that. Take the pain, day by day knowing one day, when you choose, it will be gone.

    I have had 4 weeks of absolutely no pain. No bladder inflammation and spasms, no excruciating colon pain, no stabbing knife pain in my abdomen. Somehow I made it through, although it was not pretty. And from what I have read you have the most amazing family behind you which must help so much. Putting yourself out there, to help others and create awareness will help more than you know.

    My mom gave me the article your step Father wrote and I just had to contact you in support. Not sure why knowing others understand what you are going through helps, but it just does. You are a true inspiration and keep on pushing. Life still has lots of wonderful things to offer you!

    Sincerely
    Shelley Verbeek

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    1. Thank you so much for the message. Please keep in touch. I hope I can bring more awareness over more time. It is my goal to turn this experience into a positive one. Thank you again for the kind words.

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  10. HI Erin,
    Lovely article and I hope my words can give you some hope. Many of my followers call me their endo angel. I used to suffer from endo pain daily. I had it bad and was living on pain killers. Eventually, i had enough and got fed up with my gyni's repeated advice of this hormones, that hormones, this operation and more than likely more painkillers. I just couldn't do it anymore and decided to do my own research. I discovered a whole other world. A world of real healing - though I know it is hard to believe at first. I started with a guy called David Wolfe and so much became clear to me abou the body, disease and healing. I know this is hard to hear and you probably think I want something from you or am someone trying to sell you something because it is hard to hear these things, when you have been suffering for so long. Thing is, there is a way forward. it is just not in drugs or hormone treatments. It is in healing the body naturally. Getting to the root cause and flushing out the toxins and giving hte body a real chance to heal. I want to spread that message this month with endo - a message that there is a better choice for endo besides hormones and drugs - it is holistic natural healing!
    i hope you find my blog and open the door to the information that can help you.

    Much love and hugs,

    Melissa

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    1. Thanks Melissa! I have two healers I see. One moved away but I will be seeing her when she visits in a month. The other I see every two weeks and she is amazing. I do acupuncture. I find it helps a bit, but doing trance work is very good. Good luck to you. Stay in touch.

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  11. Hi Erin
    I just wanted to stop by and thank you for your courage. I have had endo for 3 years now, one unsuccessful surgery (another one in a few months) and have unsuccessfully tried several hormonal treatments. I'm a new teacher who completed the BEd program last Sept and I too often think to myself, how am I supposed to crawl out of bed and perform in front of my students each day, especially the really tough days? Some months in the BEd program were a struggle for me and some days out on practicum were difficult to say the least so I know how you feel. Ive been really down on myself lately and I shouldnt be, my endo, while stage 3/4 is not (yet) as bad as what you describe. I also have the incredible support of my doctor who happens to be a colleague of Dr. Allaire. I went online looking for someone else like me since I don't know anyone else who has endo and therefore have no one I can relate to. Luckily I found your blog and I just wanted to let you know that your strength has given me strength to try to lead a normal life as much as possible and to stop feeling sorry for myself. In fact, after reading about your struggles I now feel stupid for having felt sorry for myself. Thank you, you're in my thoughts.

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  12. Erin, I am so proud of you fornot only holding your head up, following your dreams and blazing through with a smile, but for sharing your story and trying to fill a void in Vancouver that can unite and help so many of us. I am a teacher in Vancouver and a long-time sufferer of endometriosis. My passion and focus were two of the things that has allowed me to escape dark shadows and white towels, along with unbelievable support of friends and family. I love how you talk about smiling through the struggle...waking up and putting a smile on my face (almost) every morning reminds me of the things I have to be grateful for and improves my mental strength exponentially. Although I would have loved to learn these lessons anorher way, my suffering has taught me patience, acceptance, mental strength, courage, and generosity.....it seems we all have reaped those gifts. Good for you for listening to your body and taking a break. I have no doubt you will accomplish your goals and be a magnificent teacher. If you ever have questions about teaching, practicum (maybe we could have it so you do yours in my classroom), or need help setting up support groups, I am here. Thank you for all your time and effort in raising awareness and connecting us sisters together. Peace and health to you x. Jacqui

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