Tuesday, March 10, 2009

Awesome Servants In The Fibro Community

Hello Everyone,

I had a doctor's appointment yesterday and I came home feeling very frustrated and even MORE bound and determined to find a way to get our voices out there and our cases heard even MORE both in the medical community and in mainstream media!

First, let me say that my mood had NOTHING to do with my medical team. I have 2 of the absolute BEST people in the medical community on my medical team in my opinion. I see John R. P. Tesser, M.D. and Scott Brown P.A.-C. here in Arizona and I have to tell you that they are phenomenal! Every appointment, my team takes time with me as if I were the only patient they are seeing that day. (Great communication, compassion, information, and help.) They are willing to adjust medications and treatments to make life more manageable for me and allow me to be in control of myself instead of them assuming control over me as a patient. If I say I've experienced something new, they want to know all about it, they don't scoff or act incredulous over it, and they don't treat me like an invalid. I LOVE my med. team!

Having said that, something I admire a great deal about both of these men is their integrity and their extreme dedication to the Fibro community. That has turned out to be a double edged sword for them AND for me and their other patients because they are unwilling to say "You are disabled and unable to work" on paper or in person.

Here's why: When they are interviewed by Social Security, they are asked "What proof do you have that "so and so" is disabled medically?" "What tests show the disability?" and you can imagine the other sorts of questions. The answer to these in all honesty is "NONE" and these men are backed into a corner professionally because there are NO definitive tests that prove Fibromyalgia, no screenings or labs that show "Yep, there's the culprit in his or her body". We don't have ANYTHING other than symptoms and effects to show we actually have Fibromyalgia and we CAN'T prove it definitively.

Now my team will provide every record, every document, and anything else that records my appointments, symptoms, medications, etc.. to support an application for disability, but both feel that writing "disabled" without any provable tests and conclusions is not being completely honest. And may I say that both work very hard to find those answers and what we need so that someday they CAN prove it.

I don't hold any of this against them and I completely understand where they are coming from. At the same time I am SO frustrated for us as Fibromyalgia patients and for those of us who's symptoms are so painful and debilitating that working a mainstream career is just not an option. The possible employment we could obtain is narrowed a vast amount because our fatigue is unpredictable, our pain is unpredictable, our medication side effects are sometimes prohibitive, and the list just goes on...

I'm just bound and determined to find a way to SHOUT about Fibro the way society shouts about other diseases like Cystic Fibrosis and Breast Cancer. The numbers don't lie...there IS something substantial going on here and it's time we move from "Syndrome" to definitive "Disease"!

Ok.... I'm done ranting. For now. :)

I just want to highlight an AWESOME resource for you men living with Fibromyalgia and your spouses and loved ones. MenWithFibro.com is an incredible website just for the forums alone! It's not "preachy", it's honest and it's real.

The founder Bob Hall is a magnificent person. Bob is one of us and he is dedicated to reaching out and helping the male fibro community. We've spoken by email on several occasions and Bob is one of those peers that I have been blessed to meet that keeps me encouraged and keeps me going. He and I agree that it's a HUGE undertaking to keep reaching out and keep going in order to make sure the FC (Fibro Community) has good and usable information, especially when you're experiencing your own flares and days when the FibroMonster is kicking your butt.

MWF has leaders who hang in there and make sure that the men in the FC and their loved ones have an open and accessible place to turn at all times. If you go over and visit, let them know you found them here at P.O.F. We work hard to tell our individual readers and visitors about each other's site in order to make sure you have the MOST available information and resources we can give you. Plus it gives us a little boost to our day to hear that one of our visitors has come over from one of our sites. It's good encouragement. :)

Now a word about Serrapeptase:

I have not had any ill side effects while undergoing my experiment with SerraGold. I feel that it's going to take some time to see any long term relief that will come from it, but in the mean time on a daily basis I do feel some pain relief, and a definite change in my ability to breathe. I am happy with Serrapeptase so far and will continue to take it and keep you posted.

Well everyone, I've bent your ear long enough today. Please feel free to email me if you have ideas for ways to get our case out there, if you have questions, or if you have things you'd like to share but not necessarily here on the blog.

Here's To Your Success!


Becky said...

Hi, Sherri! Thank you so much for your comment at Something Good about how your husband serves you tirelessly and nobly while you are in pain. I have fibromyalgia as well, so I know the kind of husband-sacrifice you're talking about. At my blog, http://abbastories.com/, I will soon begin a forum called Facing Fibro. It will be focused on finding joy in the midst of chronic pain. I'd love for you to contribute! I'll let you know when it's up and running. In the meantime, I'm going to subscribe to your blog in my feed reader. What a great site!

Sherri said...

Hi Becky! I LOVED LOVED LOVED your comment and I thank you so very much! I would be blessed and honored to contribute to "Facing Fibro" when it is up and running! Absolutely!

I'm so glad you stopped by Becky and I look forward to linking arms with you to encourage and uplift others living with Fibromyalgia!

May you be blessed today,