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radio ablation [Nov. 3rd, 2008|01:48 am]

roadkill0877
[mood | uncomfortable]

I just had a radioablation of my L4/L5 disc and facet joints. It is supposed to "kill" the nerves (for lack of a better word) to reduce pain. However, it has been 5 days and my pain is worse than before...baseline is 7.5, right now I'd call it 9.25 to 9.5. I asked my doctor and he said it was "not unheard of" to have extra pain for a couple weeks.

Has anyone out there had this procedure? Did it work, and how long did it take until you felt some relief?
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(no subject) [Jul. 17th, 2008|09:16 am]

adamant_turtle
In case anyone reading this happens to live in CT (or MA/RI/etc. and willing to drive) I'm starting a chronic illness support group for people in their twenties and thirties. Our introductory meeting will be held Saturday, July 26 at noon, and run probably around two hours.

I've gotten interest from people with all sorts of issues, but by far, it seems we'll have folks with autoimmune issues like lupus (including myself).

Anyways, if you're interested, or know someone else who might be, just comment here or message me.

(x-posted, sorry)
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Welcome! [May. 7th, 2008|09:39 pm]
l_is_for_lupus
L is for Lupus, an online directory of reviews and recommendations for patients by patients, has officially gone online today.

Bear in mind, this is just the beginning. This site will not be limited to just lupus-related material. I've begun to include Fibromyalgia books and websites to review, and I hope to include other auto-immune diseases as well.

I'm very excited to be ahead of schedule! Please help get this started and write some reviews! Your opinion will help others research their auto-immune disease. I hope to see you there!



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L is for Lupus - reviews+recommendations [Apr. 22nd, 2008|09:57 am]
l_is_for_lupus
Beginning May 15th, 2008, L is for Lupus will be an online directory of reviews and recommendations for lupus patients by lupus patients. An online community/bulletin board is also in the works.

L is for Lupus is currently seeking submissions for books and other items to review. We're not ready to accept actual reviews just yet--that will begin on May 15th. If there's something you would like to see reviewed on L is for Lupus, please let me know by posting below or send me an e-mail!






L is for Lupus on MySpace
L is for Lupus on Twitter
L is for Lupus on Facebook
L is for Lupus on LiveJournal



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insurance questions and small rant [Nov. 6th, 2007|03:01 pm]

palladinemoo
[mood |determined]


So I finally got to speak to someone today at BCBS Ohio.  My coverage through BCBS Illinois via COBRA runs out in January.   It ain't pretty but it is guaranteed to accept me.  Of course they could only give me a ballpark figure.  And basically will only qualify for one of their plans- conversion coverage, not a surprise.






and back to the issue at hand






ANY IDEAS or things you are doing now in the insurance/medical costs world.   figured who better to ask then those who have been there.


cross-posted to about everywhere fibro/chronic pain/fatigue group I belong to (admittedly only a handful)-- you've all been there and might have ideas.  thanks!
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a letter to the professionals [May. 17th, 2007|08:00 pm]

palladinemoo
[mood | weird]

first off i want to say hi to everyone.  i'm new and also kind of new to livejournal in general! 

this was originally posted in my personal blog by i think it fits here as well.  lots of love!

-------------------------------------------------------------------

a letter to the healthcare professional. now don't take this the wrong way but this is going to get ugly. we have tried the 'productive' method of talking with you but it was not received. so we are just going to spell it out here, what so many of us need when we come to see you in all your forms, be you doctor, nurse, therapist that deal with matters of the body to matters of the head, case managers/social workers, really any form of 'care' provider, to just name a few. now we the patient, the client, the self, hereby resolve to do our part, we will even do more if it means we can find a middle ground. but you have to do your end. somehow despite your desire to do so, the ability to give the patient what she needs has oft been lost in the process. it is also acknowledged that some of you far exceed expectations and we are grateful beyond words. we sing your praises to our peers. but to the rest of you, what keeps you from even meeting our expectations. and you cannot say it's just insurance company demands, although we do see you struggling under that heft, but together we can make the most of those 5, 10, 15 and rare 30-45 minutes. so here are some points you might want to consider.


sincerely,
patients everywhere
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SoulfulEncounters.com -- X-posted [Apr. 26th, 2007|08:46 pm]

adamant_turtle
I'm volunteering my services to help with some PR for a personals/support site called SoulfulEncounters.com. Essentially, it's a pretty unique site, because not only can people with various disabilities, chronic illnesses and other life challenges look for romantic partners, but also friendships with others who can understand their situation. There are also regular chats and tips from professionals, such as doctors, psychiatrists and social workers about the special issues that center upon living and dating with a challenge.

Below, I've included a press release I wrote for the site's first anniversary, which comes up in a few weeks. Please take a few moments to read it and check out the site, or pass on the word to a friend who might be interested -- there are members from all over the Canada, U.S. and other countries, and more are joining each day!

Read on )
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(no subject) [Feb. 19th, 2007|10:44 pm]

areyoucominhome
basically if you know of any medicine or vitamins that helped you deal with soft tissue swelling, arthritis,or joint pain comment you dont have to read the whole thing )
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Save the OUCH podcast >> Protect Crip Media [Oct. 8th, 2006|10:29 pm]

owlcatowl
This just in from Liz Carr, co-host of the Ouch Podcast:

Even if you're not into Ouch, please consider supporting it with your electronic signature.

Thanks!
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Osteoarthritis Study [Jun. 23rd, 2006|02:19 pm]
neurinat
Hello!
  In case you or a friend are interested, the following osteoarthritis study is currently recruiting:

We’re trying to get a leg-up on osteoarthritis

 

Call 866.PAIN.006 (1.866.724.6006) or visit our website: www.arthritisoftheknee.com

 

The purpose of this study is to evaluate the safety and effectiveness of taking two doses of the investigational agent 8 weeks apart at one of four different doses or placebo. 

 

There is a 4 out of 5 chance of getting the investigational agent. 

 

Except for emergencies, neither you nor your doctor will know if you are taking the investigational agent or the placebo.

 

Qualified participants will receive study-related medical exams and study infusions at no charge.  Approximately 10 visits are scheduled over the entire 6 month study.  There are approximately 35 centers in the US expecting to enroll up to 375 participants in this research study.

 

You may qualify if:

 

§         You are between the ages of 40 and 75 years old

§         You have been diagnosed with osteoarthritis (OA) of the knee

§         You are willing to discontinue all relevant medications except rescue medication during the trial

§         You are willing to attend all clinic visits during this up-to six (6) month study

 

If you would like to learn more about this study, or are interested in finding out if you may pre-qualify, please call 866.PAIN.006 (1.866.724.6006) or visit our website: www.arthritisoftheknee.com.

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Returning to work after disability... [May. 7th, 2006|04:43 pm]

adamant_turtle
In early March, I quit my job as reporter at a small daily newspaper and moved back home, 'cause polymyositis and lupus were kicking my ass. Even though it's been barely two months, I'm already starting to feel greatly improved, thanks to eating better, sleeping as much as I need to, and of course, the fact that I am without the physical and emotional stress of a workday. My goal right now is simply to relax and give my body the time it needs to recuperate.

However...

How do I go about ending this hiatus? Right now, I'm planning to be home for about a year. I'm basically waiting to see how it all goes, and if I continue to improve and remain that way, I'd probably start looking for another job in spring '07.

My question now is how to explain the hiatus to potential employers. I'm afraid that if I tell them the truth, adding that "now I'm better," they might think I'm lying and be afraid to hire me. However, I don't want to lie (i.e. tell them I took some time to care for an ailing relative) because I'd be afraid that might come out as well. Also, if I'm receiving disability, will there be any way for employers to find that out and thus deduce that there was something serious going on with my health?

It's a sticky situation, as I knew it'd be...but of course I got to the point where I had no other options. If you have any advice to give in this matter, it'd be greatly appreciated!

While you're at it, feel free to check out my user info and add me if you think we've got anything in common...while I've already got a substantial group of friends, I'm always happy to find new folks who understand the burden of living with chronic illness :-)

(X-posted to a few different communities)
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A few questions [Mar. 19th, 2006|02:07 pm]

merelyadream
Hi, I was wondering if anyone has any suggestions on controlling and easing pain and stiffness? I am not currently on any medications and don't yet have an exact diagnosis. My doctor at first said RA but now she is referring me to a Rheumatologist. I'm still waiting for an appointment and was told when I called that they were currently booking for the end of summer. But in the meantime though I am in a lot of pain mostly in my wrists, fingers, ankles, elbows, knees and for some reason just my right hip. The last week or so my hip has been bothering me so much I can barely walk. I'm stiff and sore (actually I'm stiff and sore pretty much all day)in the mornings and sleeping at night is impossible. I've tried all kinds of over the counter meds. Advil, Advil LiquiGels, IBProfen, Extra Strength, Tylenol, Tylenol Arthritis, Excedrin, and Extra Strength Asprin. Nothing seems to do any good at all. Unless I take way more then the suggested does (asking the doctor first of course). Is there other things I can do either on their own or with the over the counter stuff that might help? I tried heat compresses and they do help but aren't very practical at work. And I've tried hot baths etc. Which again work. But it's mainly at work and when I'm out that I'm having problems. And sleeping at night through the pain. Is there any herbs and alternative stuff that might help? Any suggestions would be really really really appreciated!
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Arthritis, Fibromyalgia Study Seeks Volunteers [Mar. 7th, 2006|02:23 am]

bluesfan77
From http://healthfinder.gov/news/newsstory.asp?docID=531242

Home-based disease management will be focus of research

MONDAY, March 6 (HealthDay News) -- U.S. researchers are seeking volunteers to take part in a study of a mail-based, self-management arthritis care program.

People aged 18 and older with arthritis, fibromyalgia or joint pain are invited to take part in the yearlong study of the "Arthritis Yes I Can!" program, being conducted by researchers at Stanford University School of Medicine and the University of North Carolina-Chapel Hill.

Volunteers must by willing to spend eight to 12 hours in self-study over four to six weeks. The program is designed to enhance regular medical treatment by providing patients with the knowledge and skills they need to lead healthy lives. It does not conflict with existing treatments or programs.

The program toolkit includes: tips sheets on topics such as pain, exercise and fatigue; relaxation and exercise CDs; and a new edition of The Arthritis Handbook, which is also available in Spanish. The tool kit and study questionnaires will be mailed directly to study participants at no cost to them.

The "Arthritis Yes I Can!" program addresses the following areas:

  • Techniques to deal with problems such as pain, fatigue, frustration and isolation;
  • Exercises for maintaining and improving strength, flexibility and endurance;
  • Appropriate use of medications;
  • Effective communication with family, friends and health professionals;
  • Healthy eating;
  • Planning to take action.

More information

To learn more about the study or to enroll, call 1-877-668-0682 or send an email to selfmanagement@stanford.edu.

(SOURCE: Stanford University, news release, Feb. 23, 2006)

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(no subject) [Dec. 28th, 2005|04:25 pm]

adamant_turtle
Anyone know of any good Web sites dealing with clutter-busting for the disabled? I live alone, but thanks to lupus and polymyositis complications, I am pretty much unable to bend down or reach above my head. I'm essentially a neat and organized person, but it's gotten pretty impossible to keep up with things over the past couple of years.

(To give you an example of what kind of thing I'm talking about, I can't even bend to pick up my shoes off the floor, so they usually end up kicked off in a corner. The standard shoe tree is difficult for me to use, so I've tried to adapt with one of those that you velcro over the clothes bar in a closet, and let hang down...though again, I can't really utilize the lowest ones too well.)

Fatigue is also a big problem because of this, so any overall time-savers are more than welcome :-)
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Introduction [Nov. 3rd, 2005|06:11 pm]

eyeblog
Hi folks, just wanted to introduce myself. My name is J and I've been on Live Journal for awhile but I decided to move a lot of my old LJs from another blog into this new blog, dedicated to iritis. Iritis as you probably already know, is a complication of spondyloarthropathic (spinal arthritis) diseases such as ankylosing spondylitis.

I don't seem to have a lot of the manifestations of the spondyloarthropathies but I am HLA-B27 positive, pretty sore and I have had a bunch of iritis episodes. Currently being evaluated by a rheumatologist. I invite you to take a look at my blog at http://www.livejournal.com/users/eyeblog

Cheers!
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Hello [Aug. 6th, 2005|05:41 pm]

merelyadream
[mood | annoyed]
[music |Jason Mraz - The Remedy]

Hi, I'm new here. My name's Kirsten and I'm 25. I was diagnosed with Rheumatoid Arthritis about 6 months ago and was put on Arthrotec for pain in my wrists and elbows as well as hips and occasionally my knees and ankles. I've since started having pain in my fingers too. I've been through a series of testing for things like Lupus, MS and other things. I find some days I just don't want to get out of bed. I hurt all over. There is like a burning searing pain in the affected joints. I'll admit I don't know a lot about arthritis. I knew it was something that younger people could get and I had mild Juvenile Arthritis when I was little but nothing like this. Right now because of restrictions here supposedly I can't get Arthrotec anymore which was working. Right now I'm relying on Tylonal and IB Profen. Any other suggestions?

I work in a call center so I type a lot. The people around me don't know much about what's wrong and I don't necessarily mind telling them yet I don't want it to become a big *issue*. I have a hard time sitting down for any length of time. And my co-workers find that odd. They figure someone with arthritis would be more comfortable sitting. But I get stiff and sore. Moving around helps. Any suggestions on how to deal with that? Also I don't like to go out anymore. I find it embarrassing going to clubs and not being able to dance or drink (I'm on anti-depressants and drinking with them and with any other meds well it doesn't mix well usually...). I feel like such a freak sometimes. I want to have fun like other people my age. I want to fit in. I'm tired of being the one left out. Anyone else feel that way?
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(no subject) [Jul. 5th, 2005|03:08 am]

arachne8
[mood |sweaty skeleton]

greetings to you and your bones,

I'm 21 and was recently diagnosed with undifferentiated spondyloarthropathy. currently residing in Florida and the humidity is brutal. how are you all coping with the summer weather's wear?

-jenn
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(no subject) [Jun. 23rd, 2005|04:21 pm]

adamant_turtle
I live in a tiny apartment alone, and have a lot of trouble bending. So, of course, my bathtub gets kinda nasty before I force myself to do it, painfully and slowly.

Anyone have any suggestions on getting the job done easier? I can't be the only person out there with this problem...
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kitchen utensils and arthritis [Jun. 16th, 2005|05:18 pm]

isibael
I have arthritis in my hands and wrists. I have recently started cooking for my family, just as a way to keep busy and try new things. Mostly I manage alright, but there are a couple of things I really have trouble with, such as using can openers, opening jars, and cutting bread/bagels. I feel like there is probably a line of kitchen utensils out there which are specially designed to help people with disabilities--I think I've seen can openers with thick handles and things like that. Does anyone know if such products do exist, and where I would be able to find them? Thanks!



(cross-posted)
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|| Original Limu || [Jun. 9th, 2005|12:44 am]

junienicole
My grandmother has told us all about this product that has helped her arthritis and joint irritations amazingly, and I thought I would present it to you guys and let you know that there is something out there that just might work for you!

[info]original_limu
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