Comments on: What I Learned About My Health

By: What I Learned Today… » Blog Archive » An update on me

What I Learned Today… » Blog Archive » An update on me — Sat, 29 Nov 2008 18:19:38 +0000

[...] summer I updated you all on a condition that has been plaguing me for years. Five months later, I’d like to give you [...]

By: jessamyn

jessamyn — Sat, 19 Jul 2008 18:54:26 +0000

Hi Nicole, thanks for posting this. I’m so happy to hear that with the help of GOOD INFORMATION you’ve been able to help heal yourself and help others at the same time. Mazel tov.

By: Michael Stephens

Michael Stephens — Sat, 19 Jul 2008 10:26:49 +0000

A very brave post. I really believe this is one of the most important aspects of blogging and other tools: sharing, openly and honestly– and getting support. I agree with the above that you’ve helped people and we need more of this type of sharing

Best, M.

By: Alex

Alex — Fri, 18 Jul 2008 16:34:50 +0000

Thanks for posting this, Nicole. I know it took a lot of courage but it’s important, as others have more eloquently said above, for us all to talk more frankly about our health.

I can’t imagine what it’s like to live with chronic pain, but I can say I’ve been through unusual medical diagnoses myself: I’m 27 and I have osteoporosis. Nope, I was never anorexic or a chain-smoker, just got dealt a crappy genetic hand! I’m lucky to have great medical advice from professionals who take my case seriously – we need more of that, and we need to be more open – and less embarrassed – about health issues.

Again, thanks.

By: Alexandra Carmichael

Alexandra Carmichael — Fri, 18 Jul 2008 13:11:31 +0000

Hi Nicole,
Thank you so much for sharing your story!! I also have vulvodynia and it took me 10 years to get a diagnosis, so I can appreciate your struggle. I'm so glad you're on the road to feeling better!! For me, naturopathic care and an estrogen cream have worked wonders. I hope you continue to live pain-free!

I've also just started a website called CureTogether (http://www.curetogether.com) to help find a cure for vulvodynia - right now people can rate and review what worked best for them, so we can all learn from and help each other, and eventually patients and researchers will come together to do research studies.

Thanks for letting me mention it, and thanks for posting about vulvodynia! The more we can get the word out, the better it will be for everyone suffering in silence.

Alexandra
Co-Founder
CureTogether.com

By: Stephanie Zimmerman

Stephanie Zimmerman — Thu, 17 Jul 2008 15:41:12 +0000

I sure do appreciate your willingness to “put yourself out there”. I know it has already helped someone out there. I will keep your continued recovery in my thoughts.

By: Karol Bell

Karol Bell — Thu, 17 Jul 2008 15:09:36 +0000

Thank you for being brave enough to share that story.
It makes the point that no matter what our symptoms, that we educate ourselves about our health and not give up in trying to find an answer.
I have had various health problems over the years, and have had to push through a lot of bull to get to someone who could help me.
I have also seen people who go to the doctor and are given several prescriptions, most of which end up causing MORE problems because of side effects. Then more medicine is prescribed to handle the side effects and they end up worse than they were before they consulted a doctor!
Lastly, (or maybe I should list this first), prayer, for me, was the thing that helped me through the times when I was in pain and could not find any relief.
Bottom line, educate yourself and keep trying doctors until you find the answer!

By: Roy Tennant

Roy Tennant — Thu, 17 Jul 2008 02:50:45 +0000

As someone who has had little to complain about physically, you have my complete sympathy. I cannot imagine living with the kind of chronic pain you and others have reported here (besides putting my back out upon occasion), and I hope I never have to move beyond trying to imagine it. I particularly appreciate you mentioning being at certain conferences when you were dealing with specific painful episodes. This serves to remind me that you never know what the person in front of you is going through at any one time, whether it be a painful back or a painful divorce, and it reminds me to not assume too much about the health or well-being of people with whom I interact. We can all use tender mercies, but even more importantly when we are feeling at our most vulnerable and least able to deal with the world around us. Thanks for the reminder

By: Jennifer Hanson

Jennifer Hanson — Thu, 17 Jul 2008 02:06:37 +0000

Thanks. This is a great post. I guess my main thought is about the “all in your head” thing. Anybody whose doctor is telling them this needs to find a second opinion. I’m glad you were able to find a way to something that works for you, but sorry that it took so long. Hang in there.

By: Cheryl

Cheryl — Thu, 17 Jul 2008 01:12:14 +0000

Thank you for sharing this. I read your blog because you never fail to introduce me to great online resources, but I never expected to be moved so deeply by a personal story. It can be hard to share details like this, but it truly was for a good cause and I’m grateful that you were brave enough to share it. Take care of yourself, and keep us updated.

By: Emily Lloyd

Emily Lloyd — Wed, 16 Jul 2008 22:47:09 +0000

Awesome, awesome, awesome post, Nicole. I’m so glad your pain situation has gotten better. I second Jenica’s comment about it being sad “how frightened we are as a culture to talk frankly about our health” [including mental health--and also to talk about things going on in our lives]–it seems so unnatural to me, one of the hardest things about work culture–that you can’t really share how you’re feeling, yet you’re with these people all the time.

Anyway, good on you. I’m sure this will end up helping not one, but many.

By: Michelle

Michelle — Wed, 16 Jul 2008 21:07:09 +0000

Thanks for sharing your story, I really appreciate it what it took to do that. I am so happy that you are finally getting the care that you need and hope that everything continues to improve every day so that you can get back to a normal life.

By: David Bigwood

David Bigwood — Wed, 16 Jul 2008 20:21:14 +0000

I also live with untreatable pain, from an auto accident about 5 years back. Physical therapy helps, I do mine every night. Find a good therapist, shop around. It is a very important decision. Alpha Lipotic acid reduces my pain but does not remove it. No side-effects I can detect. It works on the whole body. When I forget to take it in the morning, I know all day long. For specific spots I use a few drops of Oil of Oregino. Stops nerve pain close to the skin. Don’t use on sensative areas. I got a few Vicadon (Rx) I save for really bad days, but those put me in a fog. It has been quite some time sine I had to take one.

Pain is real and suffering with it or the treatments does affect the quality of our lives. It is a serious problem and one that should be taken seriously. I wish you well in your treatment.

By: JanieH

JanieH — Wed, 16 Jul 2008 20:19:41 +0000

Thanks for sharing this Nicole and I hope that you continue to feel better each day. I have a very similar story about my own health — it took me 5 years of misery and 7 doctors telling me it was all in my head before I was diagnosed with PCOS. Once I started on the right medication and learned how I could control the condition, I felt so much better. Living with a chronic condition is not easy, but knowing what you are dealing with is half the battle.

I am so glad that you kept searching and that you have found an answer. Hopefully others who are struggling and not getting a diagnosis will take this as inspiration to keep trying until you do.

By: Cindy

Cindy — Wed, 16 Jul 2008 19:59:11 +0000

Yikes! Quite a story. I’ve had vvs for 20 years and make a run at the doctors every few years or so. This time I can afford the PT (that won’t take insurance) – but she can’t seem to soften my tensed pelvic floor. (I wasn’t able to handle the shots). Sounds like you found a good PT. Good luck and thanks for your story.

By: Abigail

Abigail — Wed, 16 Jul 2008 19:41:45 +0000

Thank you for sharing this with us! It is truly what you have been learning about your health and the health of others. Glad to hear you are finally on a path towards being pain free!!

By: Jenica

Jenica — Wed, 16 Jul 2008 19:31:50 +0000

It’s sad how frightened we are as a culture to talk frankly about our health. So brava to you for sharing, and offering your experience as a help to others. One step at a time, and maybe someday we’ll get to a place where we aren’t afraid to be honest about real problems.

And I hope you continue to find good people to help you feel better!

By: Brandi Tuttle

Brandi Tuttle — Wed, 16 Jul 2008 19:16:17 +0000

Nicole, thank you for your honesty and willingness to share. I hope that you continue to get better. If you only help one person, it’s worth it, right?

By: Chadwick Seagraves

Chadwick Seagraves — Wed, 16 Jul 2008 19:06:15 +0000

Thanks for being brave enough to share your story. I know it will help others. Sometimes we realize that there is still so little that we know about medicine & the human body. Glad to hear the treatments are working. As someone who has dealt with chronic pain for over 10 years, I REALLY can understand.