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Below are the 20 most recent journal entries recorded in SF Bay Area Chronic Pain, Fibro & Fatigue's LiveJournal:

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Tuesday, May 21st, 2013
6:45 pm
[br0ken_dolly]
Dear local autoimmune folks...

Do you (or anyone you care for) take Humira or Lialda, and have trouble paying for it?

I know the stuff costs a bloody FORTUNE and I might have a way to help you in the short-term. Comments, PM's, or email are all cool.

Saturday, December 4th, 2010
9:09 am
[mactavish]
I need recommendations for good, professional massage in Napa that's not spa-oriented, a basic therapeutic rub-down with the option of deep-tissue work if the person wants it, for a person (now adult) with chronic back pain from osteoarthritis due to a childhood injury. Any suggestions?
Monday, May 3rd, 2010
5:18 pm
[br0ken_dolly]
rheumatologist or GP suggestions?
Hi there,

I have a partner with chronic pain and autoimmune conditions, and who has recently relocated to the bay area after having the same (supportive wonderful) doctor for her whole life managing her care where she came from. You might imagine finding a new doctor to fill his shoes is going to be difficult. (I can't even imagine being lucky enough to have the same doc all my life! Anyway....) She's already had one rotten experience with a rheumatologist out here, and I was hoping I could make it a little easier for her to find a doc out this way. My GP isn't taking new patients right now, so I can't even send her that way to start, so I'm hoping you might have some first-hand suggestions.

The ideal rheumatologist (or GP) would be concerned with all the options my partner has already tried, what already works and what doesn't, (is willing to read through past records) and just generally TRUST their patients. Preferably in Berkeley, Oakland, or Emeryville, but willing to travel into SF, too.

I sure hope for some suggestions. Thanks in advance!
Wednesday, March 31st, 2010
10:12 pm
[mactavish]
If I want a thrift store in the east bay with basic jeans and other pants that *fit*, with a good selection in the 16-18 size range for women, where should I look? One of the biggest issues is that my rheumatoid arthritis is flaring, so I can't just run from store to store and wander aisles, I need to be able to go to a rack and try on at least a couple of pairs, if possible.

Ideas?
Friday, September 25th, 2009
2:39 pm
[phillipalden]
Where I'll be tomorrow:


WAMMFest VI:



Santa Cruz Medical Marijuana, Hemp, and Music Festival.



I'll be there running a table from Noon-5:00 for the Marijuana Policy Project. They are a serious, policy-oriented non-profit with a multi-million dollar a year operating budget. They have worked to help pass medical marijuana laws in numerous states, they are supporting a bill moving through the California legislature that would legalize and tax marijuana in the State Of California. This could bring in $14 Billion per year in taxes that both medical and recreational marijuana users are volunteering to pay.


MPP is also doing work at the federal level, but considering the spineless Congress and Senate we seem to have at the moment, I'm not hopeful. You would think that a Federal government where Democrats control both houses and the executive branch could end this stupid "War On Marijuana," legalize it for the much-needed tax revenue, and go after more serious problems like crack, heroin and crystal meth.


Or more likely, you wouldn't think that because our spineless and brainless politicians are more concerned about kissing Wall Street's ass than they are about seriously tackling re-regulation of those greedy criminals, or doing anything to truly help this country recover.


But enough of my soapbox.


Stop by the MPP table if you're in Santa Cruz tomorrow and you find yourself at San Lorenzo Park. The "Fest" looks like a lot of fun, (along with serious "grass-roots" political organizing.) What could be safer than a park full of stoned hippies digging on music and checking out the latest in "cannabis delivery systems?" (And they have become pretty high-tech considering their simple purpose.)


Hope to see you there!



Current Mood: mellow
Saturday, November 1st, 2008
3:30 pm
[pillpopper]
Chronic Pain Group Starting in SF!
SF Chapter of American Chronic Pain Association starting soon! For those struggling with chronic pain, please reply with your email and I will contact you with further information.

crossposted to sfbayarea
Sunday, September 28th, 2008
2:52 am
[kckardor32685]
Do you have information about the UC Berkeley support group??
Hey guys, I have Fibromyalgia and I just started college in the Bay Area. I met up with a doctor at the UC Berkeley health clinic and she told me that there is an FM support group for students here... the problem is that I can't seem to find anything about it! Do any of you know anything? I would really appreciate any info at all... thanks a bunch!
Wednesday, June 11th, 2008
11:21 pm
[mactavish]
From Local Forage:
I wanted to let everyone know about a fantastic class being given by nutrition guru Julie Matthews on June 22 in Berkeley. The class is not only for people with health challenges. It's for anyone who wants to know how to prepare food in the healthiest possible manner and understand why certain foods are better than others for maximum digestion, nutrient absorption and assimilation.


I know nothing about this other than what's shared on that blog, which I read somewhat regularly.
Thursday, March 27th, 2008
11:07 pm
[zombified]
The dynamic between ill/healthy people
I'm doing a little research just for the hell of it. As a formerly "healthy" person who once had a lot of friends and an active social life, I'm now struggling to meet anyone at all and cannot seem to start any new friendships. When meeting new (healthy) people, the communication almost always dies after I tell them about my illness, yet it flourishes with fellow chronically ill people. I'm curious about your experiences, and would really like to hear about them.

I'd like to contain all comments within one post, so please go here to answer: http://zombified.livejournal.com/807498.html

Thank you!
Wednesday, November 14th, 2007
9:06 am
[gtpooh]
Exercise and Knowledge Relieve Fibromyalgia
Fibromyalgia is literally a nagging persistent pain felt throughout the body that often includes specific sites of hypersensitivity. The ailment is ill-defined and difficult to teat with medications. New research suggests an exercise program that incorporates walking, strength training and stretching coupled with development of self-help skills to manage the illness can improve daily function and alleviate symptoms in women.

Read more at Psych Central.
Friday, October 5th, 2007
1:13 pm
[cjsmith]
Blue Curbs
Handicap placard holders in San Francisco, you can park here!

Since my foot problems, I've found cities an absolute nightmare. Hat tip to my beloved rfrench, who found this for me for an upcoming drive into San Francisco.

Current Mood: impressed
9:03 am
[phillipalden]
From the moderator - I have not removed anyone:


The procedure for taking oneself from the group is on the profile page.

I have not removed anyone from this group and I would not unless they were abusing other members. I have not received any reports of such abuse, for which I'm grateful. I appreciate the civility of all the members in this group.

I hope you all have a wonderful weekend, without pain but with the energy to pursue your dreams.

Phil Alden - Moderator
Redwood City, CA

Current Mood: mellow

Tuesday, October 2nd, 2007
8:37 pm
[phillipalden]
From the moderator - crazy week:


Hello Everyone:

I'm sorry I have not been more attentive as moderator of this group. There's things I still need to learn and I need to give this group more attention than I have been.

FYI - This is a terrible week for me. I have to be out of my house by 8am (with my dog) so they can re-coat the decks of my condo building. That means I haven't been home from 8am-8pm all week, with a bunch of stuff that needs doing when I do finally get in.

I will not be online much this week. I promise I will remove the person who asked, once I understand how to do that. (As I said, a lot to learn.) But my access to a computer and the web is tenuous at best this week. Please be patient with me. I will try to fix and catch-up by this weekend.

It's hard to get out of the house and be gone all day when one lives with chronic pain. If not for my dog I'd just stay in one day and catch up on everything, but the little guy needs walks and such, and I cannot do that at home this week.

Thank you in advance for your understanding.

Current Mood: crazy

Monday, October 1st, 2007
11:22 pm
[paradiz]
To Moderator
phillipalden    I have sent 2 or 3 emails to you since your the moderator and you never responded. Can you please respond?? I've used this email address under the cut to email you.    




Current Mood: okay
Monday, August 20th, 2007
7:23 pm
[phillipalden]
Volunteers Needed for Stanford Fibromyalgia Study:


From the group moderator: I received this email in my capacity as LJ moderator and thought I'd pass it along. I know nothing more about this study than what's in the text below. (Phil)


Subject: Volunteers Needed for Stanford Fibromyalgia Study:
Date: Wed, 15 Aug 2007 22:38:32 -0700

Hello,

My name is Liana Gefter, and I am a fibromyalgia researcher at Stanford University School of Medicine. I am contacting you because you have either participated in a fibromyalgia study previously, expressed interest in being a study participant, or have volunteered to help recruit study participants.

We will be conducting a new fibromyalgia study using acupuncture that will be starting in the next few weeks. Please see attached flyer for details (I am also pasting the information below). If you are interested in being a study participant or know someone who may be interested, please contact me. My e-mail is lgefter@stanford.edu. and my phone number is 650-438-4428.

I look forward to hearing from you. Thank you.

Sincerely, Liana

Stanford University School of Medicine, Dept. of Anesthesia


Needed: Female Fibromyalgia Patients For Acupuncture Study. We are conducting a study looking at skin sensitivity before and after six acupuncture treatments. We are using a non-invasive device that measures sensitivity to heat and cold. We are looking for premenopausal female fibromyalgia patients (using no opiate pain medications, with no other neurological or rheumatologic conditions, and not pregnant) to participate in our study.

Time Requirement: Six acupuncture treatment sessions, twice a week for three weeks. Each session will last for approximately one hour. There will be no charge for the acupuncture treatments. You will also need to complete one QST session before and after your treatments to measure skin sensitivity. Each QST session will last less than two hours.

If interested, please contact Liana Gefter, Stanford University School of Medicine via email at: lgefter@stanford.edu or phone 650-438-4428.

Wednesday, June 20th, 2007
12:24 am
[abcripcouples]
Study for women with disabilities and their male AB partners
                                                    

Are you a Woman with a Disability involved with an Able-bodied man?




Or an Able-bodied man involved with a Woman with a Disability?




Is your Disability Visible to other People when you are out in Public?




If so and you live in surrounding Bay Area of Northern California and have been in a monogamous relationship for at least one year:




You are invited to participate in a Study conducted by a psychology student at California School for Professional Psychology which Explores Your Relationship.




If you are interested Contact through this LJ page.




I am a graduate Student at Alliant International University, where I am getting a doctorate in psychology. I am looking for WOMEN with a VISIBLE PHYSICAL DISABILITIES who are with MEN who are ABLE-BODIED. THE WOMAN HAS TO HAVE HAD A VISIBLE PHYSICAL DISABILITY WHEN SHE FIRST MET THE MAN.




 




**This study has this particular criteria because it is studying certain factors and is not meant to be discriminatory towards anyone that does not meet this criteria. If you are a person or couple that does not meet this criteria  but would like some referrals please contact me.*:




 




 



Wednesday, May 30th, 2007
11:29 pm
[paradiz]
Which Fm Support Group Is Closer??
Hey everybody, I'm moving to Concord, CA in the middle of June and I was wondering distance wise, which fm support group would be closest to get to from Concord, CA??  Berkeley Support Group? OR.... ???  Please respond.

Also, I would love to begin a friendship with someone in the bay area that has fm and understands but likes to do things on their good days. Friend me if you'd like or email me at the email(paradiz@livejournal.com) on my user info page :-)

Thanks in advance.

~Myka~


Current Mood: bored
Monday, May 28th, 2007
9:40 pm
[phillipalden]
Thursday, May 24th, 2007
11:58 am
[phillipalden]
Explaining my back injury, (for better understanding)


About four or five years ago, (it's been so long I cannot remember exactly,) my lower back started hurting. A lot. I don't know how I injured it but a mistake at the gym is a prime suspect.

(So be careful and isolate your back at the gym. Also don't pull more weight than you need. Only an idiot is impressed by someone pulling too much weight, and I've seen too many of those idiots at 24-Hour Fitness.)

So I went to my doctor, who is an immunologist, not a sports medicine physician. I was put on pain-killers and sent for an increasingly complex series of radiology procedures. None of the diagnostics determined what was going on.

But the worst part was the pain-killers were not working. I ended up being under-treated for my pain for close to 33 months. I was a bear. I fought with my doctors and grew more and more angry when they failed to bring my pain under control. I went from favorite patient to the guy they dreaded seeing. My back hurt all the time. I couldn't sleep well or focus on my art or even work part-time.

After 33 months of this situation I was finally sent to a pain specialist. This guy was a godsend! He explained that I had "disk material" leaking out of my spine and inflaming the nerves around my lower back.

(This is not a full explanation of what is wrong with me. To find out if there's a surgical option I would have to see another specialist in SF that would likely be expensive.)

But the pain specialist did something that changed everything – he put me on Lidocaine trans-dermal patches. Lidocaine is the stuff the dentist shoots into your gum before drilling. The patches (two of them) are about 4"x6" each and I change them approximately every 24 hours, (shower to shower.) The one downside is sweat can make them come off, so when I hike I sometimes have to bring an extra pair with me.

When I left the pain specialist's office and sat in my car, I was pain-free for the first time in 33 months. It felt so good that I cried. I was so grateful to have the pain brought fully under control.

So this is where I stand today: I take a combination of opiate-based pain-killers (PK) and the trans-dermal patches. My pain is fully under control, but the PKs can make me forgetful.

(That's why Erik handles all birthdays and anniversaries for our friends.)

I can exercise. I can hike. I can do everything short of help move your furniture. I cannot work a regular job because the PKs make me miss small details sometimes, and some mornings my stomach feels terrible for the same reason.

I can, however, write and edit, so my life has been given over mostly to my art, which is novel writing. Writing gives me purpose and brings me pleasure.

I also have a life-partner who works very hard, so I take care of the domestic side of our life together so he can focus on work. I'm very happy doing this and feel like I'm really helping. Erik works very long hours and travels a lot. When he comes home he's usually exhausted and needs a little pampering, (which he totally deserves.)

I may go see the specialist in the City someday. I don't know at the moment. My pain is under control and I have a very full and rich life. Even though I'm living with chronic pain I am very happy overall. Some days are better than others, but isn't that true for everyone? There's no guarantee the specialist can "fix" my back problem, so we could be talking hundreds or even thousands of dollars for a diagnosis that might not change anything. I need to go back to my regular pain specialist to see if there's anything new on the horizon.

So as I said, if I forget your birthday or anniversary, please don't take it personally. I have to work very hard to remember many things. I also make an occasional mistake. I drive very carefully. I get enough rest, (most nights.)

So that's me. This post will probably be cross-posted to a couple of pain groups, so forgive me if you see it more than once.

Tuesday, May 8th, 2007
9:22 am
[twostepsfwd]
Fwd: Hayward Screening of "Living with Fibromyalgia"
From: "Dawn Atkins" <dawn@therabbitwarren.org>
Date: May 5, 2007 10:29:04 AM PDT
To: <babn-events@babn.org>
Subject: [babn-events] Film and Discussion on Fibromyalgia at the Warren - May 12, 2 PM
Reply-To: babn-chat@babn.org


May 12th is National Fibromyalgia Awareness Day. There is a new documentary called Living with Fibromyalgia. Our family will be hosting a showing of the video and a discussion on that day beginning at 2 PM in our Hayward home. (The Rabbit Warren, a bi-poly-Pagan home.)

If you would like to attend and need directions, please email me. If you already know The Rabbit Warren in Hayward, please let us know if you are coming so we can know how many people to expect.

Dawn, Lon & Troy (aka The Rabbit Warren)


Info Links:

Wikipedia on Fibromyalgia: http://en.wikipedia.org/wiki/Fibromyalgia

National Fibromyalgia Day: http://www.fmaware.org/may12.htm

Film Living with Fibromyalgia: http://livingwithfm.bravenewtheaters.com

The Rabbit Warren: http://www.therabbitwarren.org
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