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Fibromyalgia Awareness Day 2010

Today is National Fibromyalgia Awareness Day. Fibromyalgia is one of many chronic illnesses I have and I decided to make a short video to talk about it:

At this point I would like to include a link to a 2008 post I wrote about fibromyalgia. It includes videos of a husband whose wife had fibromyalgia and died, as explained in his videos. In the first video, he refers to a New York Times article that enraged many in the fibromyalgia community (myself included). My letter to the editor of the New York Times is included in the 2008 post linked below. (Please note: Lisa’s husband refers to fibromyalgia and “chronic fatigue” almost interchangeably in his videos. ME/CFS and fibromyalgia are two separate diagnoses. For more information on ME/CFS, please see yesterday’s post ME/CFS Awareness 2010).

I have included the post below because it links to the New York Times article I alluded to in my video, it includes my letter to the editor of the New York Times, and it includes Lisa’s husband’s description of how hurtful it is when patients are not believed. The New York Times article questioned the validity of fibromyalgia as a “real” diagnosis.

Here is the 2008 post containing videos of a husband’s grief over the loss of his wife who had fibromyalgia.

If you know someone who has fibromyalgia, please know that their pain is real. If you have fibromyalgia, please know that there are many fellow patients here to support you.

Finally on a brighter note… The New York Times is no longer writing columns questioning whether fibromyalgia is “real”.

Check out today’s extensive coverage about fibromyalgia:

Times Essentials: Reporter’s File — The Long Search for Fibromyalgia Support

Also, check out this New York Times multimedia program:

Patient Voices: Fibromyalgia

It’s nice to see that the New York Times has left the days of questioning fibromyalgia’s existence behind. It’s unfortunate that they ever suggested otherwise but it’s nice to see that their coverage now reflects that it is real and it is a serious illness.

This post was written by Jeanne at http://chronichealing.com. Copyright Β© Jeanne β€” chronichealing.com. All rights reserved.


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Reading: Fibromyalgia Awareness Day 2010

13 comments

1 JasmineNo Gravatar { 05.13.10 at 3:07 am }

Thank you for spreading awareness, Jeanne. Maybe your next video you’ll play the piano behind you πŸ˜‰ *hugs*
.-= Jasmine´s last blog ..Taking a positive step back =-.

2 JeanneNo Gravatar { 05.13.10 at 3:17 am }

Jasmine,

With so many awareness activities going on for so many different conditions, I only wish I could have done more.

As far as the piano, electronic keyboard, and organ that are behind me in my videos… trust me when I say that you wouldn’t want me to play. After all, your ears might bleed if I did that. I’d say that would be “contraindicated”. I’m afraid I am not the pianist in the house. I only wish. When I was younger I took lessons for piano and violin but I never did well at either. I had this little problem with… umm… reading notes. πŸ˜‰

So, when are you going to post a video, Jasmine? You’ve got a YouTube channel. Why not fill it up? πŸ˜‰

Jeanne

3 Jannie FunsterNo Gravatar { 05.14.10 at 12:47 pm }

Hi Jeanne, I will tweet this. Fibromyalgia does need a much wider awareness than it currently has.

And great news about The NY Times spreading how real this is.

Hope you are well today.

hugs.
.-= Jannie Funster´s last blog ..Jazzercise Advice & Something I Can Only Confess In A Poem =-.

4 JeanneNo Gravatar { 05.14.10 at 12:58 pm }

Jannie,

Thank you. Tweets are always appreciated since I no longer have the ability to tweet myself after closing my Twitter account.

Fibromyalgia really does need to be much better understood. It really is nice to see how the New York Times went from questioning whether fibromyalgia is real (FAIL!) to giving it the time and space it deserves and covering it in such a way that it does not question its existence in the slightest. It’s just terribly unfortunate that they ran the 2008 article… which hurt many people. I’m glad they’ve made great strides in their handling of fibromyalgia in such a widely-read newspaper.

I am hanging in there. I’m very, very drained right now.

Hugs back to you. πŸ˜‰

Jeanne
xo

5 JasmineNo Gravatar { 05.15.10 at 1:00 am }

Haha, you got me there πŸ˜‰ What do you use to take your videos? My dinky little digital camera wasn’t meant for them, and it shows lol.
.-= Jasmine´s last blog ..Taking a positive step back =-.

6 JeanneNo Gravatar { 05.15.10 at 1:14 am }

Jasmine,

OK. You got me. I got you where?

As far as the camera is concerned, I’ll have to get back to you on that question. I can’t find the camera. πŸ˜‰ My hubby moved it and I’m not sure where but at 1:08 am… I’m not going to wake him up to ask him. He’d be less than thrilled. It’s a video camera my in-laws gave us when they bought a newer model. Lucky us… because this one still works fine. If I forget to get back to you, please remind me. All I can find right now is the cable that was attached to it. (It’s still attached to my PC). The camera “took a walk” because I tripped on it. (I have a really bad sense of spacial relationships and I’m famous for tripping, stubbing toes, etc. I think part of it is my balance but it’s more complicated than that). So, my hubby nicely moved it to… somewhere.

It’s in “mystery camera land”.

lol

Jeanne

7 JasmineNo Gravatar { 05.15.10 at 1:39 am }

After I said you should capture yourself playing the piano, you reminded me that I haven’t posted a video in a while. I thought to myself, “I probably shouldn’t talk” haha!

I feel more comfortable writing versus speaking because I have time to think and I can ‘backspace’ my boo-boos. Can’t do that with live taping. Then again, you can edit, but I just rather not bother. Maybe I will soon. I’m on a weight-loss journey again, so recording myself may just motivate me more.

No rush on the camera info. I honestly can’t afford to make any purchases thanks to medical bills. Because my husband’s been out on disability six months, he has to start paying for insurance out of pocket. I’m considering dropping from his and making Medicare my primary. I need to look through all the different plans to see what fits my needs. I have zero prescription drug coverage at the moment because primary covers it. To be honest I’m so done with prescription meds – the only thing I can really tolerate (because of sensitivities) is my migraine abortive, but that causes rebound anyway. And I don’t need coverage for medical marijuana, since that comes out of my pocket. Decisions, decisions…
.-= Jasmine´s last blog ..Taking a positive step back =-.

8 JeanneNo Gravatar { 05.19.10 at 9:40 am }

Jasmine,

I apologize for keeping you in suspense. It has been far too busy for my liking the last few days. OK. Here is the camera I use for videos:

Sony Digital 8 – Steady Shot (USB Streaming Handycam)

Like I said, it was a hand-me-down that we received when my in-laws upgraded to a newer model camera and gave this one to us. πŸ™‚

Trust me when I say that you wouldn’t want to hear me play piano. Really. I am not the pianist in the house.

I would love to see a video of you! You know I’m going to bug you about it now, right? πŸ˜‰ lol

I understand what you’re saying about being able to correct writing errors before publishing. When I first started making videos, I was very nervous because I didn’t want to have to do multiple takes and I definitely didn’t want to have to mess with editing it. (It’s hard enough to add captions, label it with topics for YouTube to pick up, upload it, etc.)

Now that I’ve done a few videos, I am so much more relaxed. This last one was the most relaxed one yet. I had nothing at all written down and I didn’t mentally rehearse. I just knew what I needed to say and said it. My husband generally sets the camera up on the tripod. This last video I was very exhausted and in my sweats. I simply didn’t care. It was a “come as you are” type of video. All I really cared about was getting the message across. Sometimes I think people pay more attention to a message where they actually see the person speaking. Also, I was too darn tired to write a detailed post for Fibromyalgia Awareness Day but wanted to do it justice. So, I thought it would be a good post to use a video clip to say things faster than I could write them. In this case, it took less energy to have part of the post be a video.

Good luck with the new plan you are following to lose weight.

I understand all about medical bills. When we did our 2009 taxes, our out-of-pocket medical expenses were over $15,000.00! That’s WITH insurance. We pay the full premium for the insurance since my husband is self-employed. It’s expensive! Don’t you hate having to compare all of the plans to try to figure out what costs least but covers what is needed? Wow. I haven’t heard of anyone with a zero prescription drug coverage in a long time. I wouldn’t mind that! I’m sorry that it’s not doing you any good anyway. πŸ™

I hope your decision-making process goes smoothly!

Jeanne

9 tandyNo Gravatar { 06.28.10 at 11:09 pm }

i have been diabetic for 30 years and on insulin pump which saved my life l breast cancer in 0408 and 7 weeks of radiation and now i have fibromyalgia and my husband told me the other day that he wants to leave me because he didn’t know i would get this sick. neither did i . i don’t make enough money to leave on my own, we own a small little townhouse he doesn’t understand the pain and the good days and the bad days, i have no family at all, no mother no father no sister no brother… no one in this life, except my husband. i pay the bills on time and try and keep a clean house and do his laundry and fix his lunch every day and try and fix dinner most nights. i am not a bar hopper, i just stay home and watch tv and rest and when he comes home and starts yelling for no reason, he is a drinker and works in the heat all day, i am at the end of my rope and if i were to do die tonight it would be fine with me. He is a sex offender and fixing to lose his job so all he wants to do is pay some heap of a motor home and hit the road without me, he used me to buy this townhouse as sex offenders just can’t live anywhere. [Editor’s Note: I have removed this reader’s email address to protect her privacy]. i hope i have used the right form to vent thank you.

10 JeanneNo Gravatar { 06.28.10 at 11:26 pm }

Welcome Tandy!

Let me start by saying that I want to post this phone number for you first and then I will post a more detailed reply. This is the National Suicide Prevention Lifeline:

1-800-273-TALK

If you look at my blog, you’ll see that I have posted about this lifeline number on numerous occasions. I refer people to this number often.

I happened to see your blog comment as it popped in and wanted to reply immediately with this number, based on your comment. I’ll post more info soon but wanted to get this number to you in case it might be helpful. They operate 24/7, 365 days/year. So, if you need to talk with a trained professional for free, this is a great place to call! I’ll be writing more shortly.

Hang in there!

Jeanne

11 JeanneNo Gravatar { 06.29.10 at 12:02 am }

Tandy,

My mom has diabetes and I know it can be challenging. I’m glad you’re getting the treatment you need for your diabetes. I have several friends who are breast cancer survivors. I myself have fibromyalgia (along with a slew of other illnesses).

I’m very sorry that you are under stress in your relationship with your husband. You had no way to know you were going to get sick. My husband and I have come to truly appreciate the “in sickness and in health” part of our vows more than we ever dreamed we would. (I was chronically ill before we got married but nowhere near as sick as since getting married).

You can’t be blamed for being sick. It’s not your fault.

At the same time, it’s not uncommon for spouses of chronically ill patients to simply not know how to deal with it. I’m sorry your husband doesn’t understand your illnesses and the whole “good days” vs. “bad days” aspect. There are lots and lots of fellow patients online who DO get that concept! Networking with them might give you great comfort! If you have a local (in-person) support group in your area, that too can be very helpful. It sounds like you are doing the best you can with the health problems you have. I’m sorry that things are so rough for you now. πŸ™

As far as being at the “end of your rope” and saying “if I were to die tonight it would be fine with me”, I don’t quite know how to take those comments because I just “met” you. However, I have learned to treat comments such as this with the utmost seriousness. That’s why I sent you the comment before this one with the lifeline number. I know that may have been a “figure of speech” but nevertheless I have to take it seriously.

You are clearly under a massive amount of stress. That can make it hard to think straight (and easy to slip into a panic). I know it’s easier said than done but try as best you can to calm down because the stress will only worsen your illnesses. I know this may be easier said than done.

Do you have access to an affordable community mental health center where you could get matched up with a therapist to help you deal with all of this stress? Or do you have a large teaching hospital that’s reachable from where you live? The large teaching hospitals typically have a sliding fee scale for therapy costs. The sessions’ costs are directly tied to the patient’s income (or lack thereof). So, some patients even qualify for free treatment.

You have listed an enormous amount of major stressors. If there is any way of getting matched up with a therapist to help you sort through everything you mentioned, it could really be beneficial! If your husband has a substance abuse problem that is affecting you, you need a support system in place to help you through it. That’s another reason I bring up therapy. Also, some therapists are specially trained for helping patients with chronic pain – to best manage their symptoms.

Tandy, I can see your email address from where you entered it to make a blog comment. So, I took the liberty of editing your email address out of your blog comment to protect your privacy and reduce the chances of you getting spammed. (Google robots scan blogs and pick up email addresses).

In any event, if you can give me idea of your primary goal(s)… (finding fellow fibro patients, navigating the health care system – especially tricky for mental health sometimes, just connecting with people who “get it”, etc)… That will help me to see if I can help you more easily find resources that are likely to help you. I can’t promise I’ll be able to find what you need but I can do my best.

If you need to vent, you know where to find me.

No matter what’s happening with your chronic illnesses, marriage, housing situation, husband’s issues with alcohol, etc… things CAN get better! Please hang in there and keep me posted! OK?

I’m sending positive energy your way!!

Take care,

Jeanne

P.S. I don’t mean to jump to any conclusions or make you uncomfortable in any way but I wanted to provide you with one more hotline number JUST IN CASE it should be applicable for your situation. Here is their site:

National Domestic Violence Hotline

Take care!!!

12 tandyNo Gravatar { 01.25.11 at 10:51 pm }

Jeanne,
thank you so much for your concern, It has been along time since I have been to this webstie.
I apprecatie your caring about my illlness. God is Good and he leads me though each day. God bless and keep you

13 JeanneNo Gravatar { 01.26.11 at 12:56 am }

Tandy,

It has been awhile since your last message. I hope you’re doing OK. Thanks for stopping by.

Take care,

Jeanne

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