May 2011
1 post
April 2011
8 posts
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Question for anyone with a head fog:
Okay so mine has been really bad these passed few weeks and I thought I’d ask you guys about this. You know how, sometimes, when you take narcotics, you get totally wired? Not sure if this is normal but that feeling can last a day for me after taking something really strong (like Demerol). It’s like I don’t even have a head fog. But I know I can’t just pop one of those when...
idoodle-beta asked: I smoke dope regularly, I have done since I was 14 (a massive 19 years ago!!).
I find it does help to dull the pain of the arthritis. But also, importantly, it helps with my depression. I have not found any bad side effects & would recommend you try it. You might find it's not for you, but it's natural so it has to be better than meds.
I find it does help to dull the pain of the arthritis. But also, importantly, it helps with my depression. I have not found any bad side effects & would recommend you try it. You might find it's not for you, but it's natural so it has to be better than meds.
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secretsofmyhart asked: Wondering if anyone has used medical marijuana to help with lupus pains? I'm seriously considering it and would like to hear from any lupus patients who've used it. Thanks!
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“You feet are so cold…ARE YOU DEAD?”
– Mom (talking about when my Raynaud’s was acting up)
“Fibromyalgia sufferers do have the ability to be happy despite the pain. This...”
– Cristina Olvera, “5 Misconceptions of Fibromyalgia” (http://factoidz.com/5-misconceptions-of-fibromyalgia/)
So, so, so true.
(via missgingerlee)
March 2011
36 posts
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Chronic Pain Harms Brain's Wiring
Constant firing of neurons can cause permanent damage, researchers say.
Chronic pain can disrupt brain function and cause problems such as disturbed sleep, depression, anxiety and difficulty making simple decisions, a U.S. study finds.
Researchers at Northwestern University’s Feinberg School of Medicine in Chicago used functional MRI to scan brain activity in people with chronic low back...
shivrs-deactivated20111215 asked: Hi. So In 2010, I suffered two massive flare ups. My rheumy finally decided to put me on Rituximab as Benlysta was not FDA approved yet. I was wondering, now that It is approved, would it be alright if I did Benlysta? Anyone ever try it within 6 months of Rituximab infusions and still on prednisolone? I've been on prednisolone daily for about 3 years and a bit now. I sort of have a love/hate...
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The journey of a thousand miles begins with a...
-Confucius
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“There are two types of Fibromyalgia: Primary Fibromyalgia and Secondary...”
– Cristina Olvera, 5 Misconceptions of Fibromyalgia
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My grandparents are the coolest grandparents in...
Allow me to explain. I just received my Easter present from my Mamaw and Papaw; it was a bunch of little stuff they found on sale, but the one thing that really stuck out was this book. I’d seen it before and I was speechless when I remembered where. I hadn’t asked them for it. I hadn’t told them there were books on Lupus.
Remember this book?
That’s the one they got me....
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Walk for Lupus
I’m joining a walk for lupus on May 14th, 2011 in Hollywood, FL. I was diagnosed with Lupus when I was 10, I’m 20 now, and it would really mean a lot to me if you guys could donate at least $1, walk with me, or reblog this to help me support the Lupus Foundation of America. To donate
If you’re in the South Florida area
Thank you
Carrie :)
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Here. →
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Okay so Chronic Illness Cat is loading on...
It’s not very creative, using a cat, but whatever.
momojuliet asked: I had more to say on the last answer I posted but I accidentally pressed enter!
anyways to continue what I was trying to say, I was at the mini-conference hosted by the LFNC yesterday(maybe you saw me, I was the small Asian girl with a white cardigan ? sitting next to my dad? maybe not?) and I just wanted to say, listening to your story really encouraged me to stay hopeful. And I was even...
anyways to continue what I was trying to say, I was at the mini-conference hosted by the LFNC yesterday(maybe you saw me, I was the small Asian girl with a white cardigan ? sitting next to my dad? maybe not?) and I just wanted to say, listening to your story really encouraged me to stay hopeful. And I was even...
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I'm thinking of starting a Chronic Illness/Chronic...
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Since we're talking about terrible diagnoses...
My first doctor told me that I didn’t wear high heeled shoes often enough. Yep, that’s right. All I had to do was go out and buy a pair of fancy shoes and all my problems would be solved. Needless to say, the shoes made no difference to my health.
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Hello
Hi, I just wanted to say that I love your tumblr and it makes me feel like I am not alone. I’ve had Lupus for about 4 years now. I was disgnosed in my first year of boarding school and it’s been a tough couple of years but I’m trying my best to live life to the fullest.
I just wanted to say thanks and that I will keep supporting your Tumbr :)
Shivani
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Benlysta Cure: Not Overnight But Over Time
Benlysta: Patience and Healing
by Tory Hartmann
Benlysta is a drug invented by Human Genome Sciences, a pharmaceutical company that has been in the forefront of autoimmune research. Their latest drug, Benlysta, which at this writing is on the verge of approval, has been in clinical trials for the past seven years. I know. I’ve been on it since February of 2004 under its first name,...
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The Other Diagnoses
The “other diagnoses” than lupus ranged from autoimmune hepatitis, drug-induced hepatitis, spondylomyelopathy, and synovitis. I saw a gastroenterologist for about 2 months that seemed to only collect a co-pay from me and ignored my complaints of joint pain and a referral to a rheumatologist until I finally explained I am going to college soon and need something to treat the pain...
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I’d like to submit a brief anecdote from my diagnostic process. It’s taken me awhile to find this truly funny, but I think almost seven years and relatively good health can go a long way. ;)
The first signs of my deteriorating health began the summer I was sixteen. I got the flu. I’d only had the flu once before and I was honestly unaccustomed to getting sick; it was awful. It...
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Benlysta Side Effects
What to expect with Benlysta
by Tory Hartmann
Benlysta, a new drug about to be approved by the FDA, is the first new drug for lupus in over five decades. The excitement over Benlysta is tempered by the study’s mixed reviews about side effects. There is also a question as to the efficacy of the drug compared to steroid use, the traditional treatment for lupus.
Personally, I find all of this...
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Benlysta: How I Got Lucky
Benlysta: I’ve been on it (LymphoStatB) since 2004
by Tory Hartmann
In 2004, depressed and sickened with lupus, I felt myself spinning lower and lower. When I found out about a study concerning a new lupus drug, I wrote to an address provided in an advertisement and long story short, was offered a place in the study.
Frankly, it was pretty scary as it involved infusions of a mystery...
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Before they diagnosed me with DLE, they went...
They seem ridiculous now that I look at them.
Mosquito bites.
Ant bites.
Flea bites.
Food allergies.
Sun/grass/tree allergies.
MRSA.
Cancer.
In the end it came down to Cancer and DLE. That was when they finally took a biopsy of my skin.
If any of you have ridiculous stories concerning diagnoses or doctors, feel free to share them.
Science Daily: Powerful New Painkiller With No... →
butterflyzz:
prettyboygenius:
dkfhdlkshfdfjdhfjds
just, oh my god, it works directly on blocking pain signals
is this the answer to all my prayers? is god finally listening?
i am seriously crying
That makes two of us!! Phase II clinical trials is a way off but UK, US & Canada involved is just a dream come true!
(PLEASE, make this happen. Get this through Phase IIII and on...
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Lupus Foundation Applauds FDA's Decision to... →
whatthejules:
March 09, 2011 (Washington, DC) Today, the U.S. Food and Drug Administration (FDA) approved the drug, BENLYSTA®, for the treatment of lupus, an autoimmune disease. Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA), has issued the following statement regarding the FDA’s decision: “This is a historic day for the millions of...
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Ellen: It's awesome that you're back at school. This time, try to stay here. *laughs*
Me: It's nice to be back.
Ellen: Just don't get sick anymore, okay? *smiles and leaves for her class*
Me: *blinks* I'm always sick.
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Can I Blame Lupus?
Can I Blame Lupus? How to Deal With Confusing Complications and Concerns By Mary Dixon Lebeau
Marlene Thames clearly remembers cleaning her Charlotte, NC, home and heading to the space under the stairs to retrieve her Christmas decorations. The next thing she remembers is waking on the floor beneath the stairs, unsure of how long she had been there or just why she was there in the first place....
foreverseptember asked: Hi! I Found your blog searching tags that are similar to my issues. I've started a blog to basically talk about my life with AI diseases thought maybe you could check it out. I know sometimes it helps to know "well fuck there's someone out there feeling just like I am!"
http://livingwithautoimmune.tumblr.com/ :)
http://livingwithautoimmune.tumblr.com/ :)
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“You gotta let the phone ring more than four times when you’re calling a...”
– House
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“‘I’m okay,’ she told them, although she felt so tired, like...”
– Blue Bloods by Melissa de la Cruz (Chapter 41, Page 283)
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Using Alcohol to Stop Pain Can Be Dangerous
A fibromyalgia patient I know in person got to talking to me about pain relief and what we’ve found that works. She’s more…traditional, to say the least. She suggested natural remedies and - big shocker here - tequila. So here’s a bit on alcohol and pain for you:
The use of alcohol to depress the effects of pain is as old as the fermentation process itself. Alcohol is...
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NSAIDs
These are non-steroidal anti-inflammatory drugs, and they can do more than some people think. I assume you can get all of these over the counter. Here are the common NSAIDs and their different names.
Aspirin
Celecoxib (Celebrex)
Diclofenac (Voltaren)
Diflunisal (Dolobid)
Etodolac (Lodine)
Ibuprofen (Motrin)
Indomethacin (Indocin)
Ketoprofen (Orudis)
Ketorolac (Toradol)
Nabumetone...
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when
you’re watching house and one of your chronic illnesses is suggested for the patient’s diagnosis:
you thought of it first:
you start getting your hopes up that the world will learn more about what you deal with because of this episode:
they end up REALLY having something completed unrelated and CURABLE by the end of the show:
February 2011
49 posts
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Raynaud's Phenomenon
Thought I’d make a post for a condition some of us end up with along with Lupus:
Raynaud’s phenomenon is a condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose.
Causes, incidence, and risk factors
Raynaud’s phenomenon can be associated with other conditions. This is called secondary...
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That awkward moment when the nurse asks what...