December 2011
73 posts
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posting general rheumatoid arthritis informational...
is such a hit or miss. 9/10 times the “informational article” forgets to mention a ton of symptoms: fatigue, secondary issues, uveitis, costochondritis, nerve and muscle pain, on and on and on. If you’re going to share a link on tumblr for basic Rheumatoid Arthritis information, make sure the link is providing your readers with accurate information. If the link is not up to par,...
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Embarrassment and Chronic Illness
What if you’re embarrassed or in denial about your chronic illness? I receive this question all the time. What do you do when you’re embarrassed by your body’s ailments? What do you do?
Chronic illness brings about new insecurities that healthy individuals don’t have to battle, new circumstances and fears that have never crossed their mind. From knowing where the nearest...
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Anonymous asked: Were you ever depressed when you were sick? How did you get over it and be positive like you seem now? I'm struggling with a deep depression because of chronic illness and dont know where to turn.
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Talks on dealing with chronic illness in Raritan... →
If you are in the Raritan Township area of New Jersey and are suffering from a chronic illness—from Diabetes to Autoimmune Arthritis to any other chronic pain disorder— this might be worth checking out.
Hunterdon Prevention Resources will be holding workshops to ‘take control of your health’ on Mondays, January 9th-Feburary 13th from 4-6PM. Though the workshops do not...
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8:30AM CT scan with contrast and set of x-rays to see how enlarged spleen is
Sleep 10AM-1:40PM
Awful gyno. appointment that puts me in tears with no answers 2:10PM-2:45PM
Sleep.
I don’t have a lot of bad days mentally. Physically? Rarely do I have a good day, but mentally I stay in a pretty positive and productive mindset. But not today.
Today is just one of those days. Tired of tests,...
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Weekly Link Roundup 12/28/2011
Scoliosis Links— A massive database of all resources scoliosis, from Flatback Revision surgery forums to resources to help you find a surgeon or a specialist. If you’re looking for resources and information before making treatment decisions, it’s worth checking out.
Renal Stones (Kidney Stones) in Patients with Rheumatoid Arthritis— A study that found a high(er)...
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Vaccination for Rheumatoid Arthritis and Crohn's... →
Note: the title is somewhat misleading. There is no indication of when/how/where this vaccine will be released.
12/25-27/2011: New scientific research has come closer to finding the trigger mechanism of autoimmune diseases. Based on nanotechnology and manipulating an enzyme that triggers immunoprocesses to spin out of control, scientists are developing a vaccine that will, hopefully, reach a...
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Merry Christmas, Here's an Enlarged Spleen?
Not the most ideal gift.
Christmas was incredible. Truly incredible. My mum out did herself this year and made the holiday something to be remembered. 28 guests and a huge dinner. Despite the pain I was in, I pushed through it. I used the phrase “better is not in my vocabulary” and “a day at a time” more than a few times with guests. I spent the...
200 new followers today! Incredible!
You guys are all so great and the positive messages/stories I keep receiving are so inspiring!
Off to torture my body (which is seriously paying for yesterday’s festivities) by going shopping. Thank goodness for pain killers or I’d never leave my house. 102 degree fever, you can suck it.
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seppin asked: I just discovered your blog yesterday but thank you for showing me that it is possible to be positive through chronic pain! (I'm 16 with a chronic migraine for over a year and I'm struggling to finish high school.. it's hard to find people in my age range who I can relate to..)
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yourpersonalcheerleader asked: Thanks for changing lives. You are truly an inspiration to many struggling with pain of all forms!
Merry Christmas to my AMAZING followers, friends,...
2011 was hands down the hardest year of my life. I never thought I could endure so much both physcially and emotionally all at once for so long, but I have an will continue to with the support and love from all of you. Chronic Curve is so much more than just a blog now; it is a passion a project, and a beautiful gift I’ve been lucky to have received through unfortunate circumstances.
...
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Enbrel Round II:
Just as painful as the first time and because of nerve damage from the surgery, I can’t do it on my stomach.
Doctor is ordering disposable syringes so I can control the rate of injection
Still made me cry
Still had to have someone else do it
No changes in symptoms yet
If crowded malls are your biggest problem this Christmas, you’re lucky.
If holiday traffic is your biggest annoyance this season, you’re lucky.
If not getting everything you wanted for Christmas is your biggest problem this year, you’re lucky.
If you have a roof over your head and food in your kitchen, no matter how small a salary you might earn, you’re lucky.
If you...
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Canadian Scoliosis Resources
I’ve received a bunch of requests for Canadian Scoliosis organizations. Unfortunately most of them do not have a website but I’ve found some forums and contacts to the organizations that might be helpful:
Scoliosis Association of British Columbia: contact Llweyn Friars at scoliosisassn.bc@shaw.ca
Scoliosis Association of Ontario: Marion Primeau at...
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When the Art of Distraction Fails: A Question For...
It’s 4:23AM. I haven’t slept and I’m absolutely exhausted. My eyes want to close but I can’t lay comfortably in this bed without pain. The couch is too soft for my back and the lounge chair just doesn’t work. I have a separate A/C unit in my room that is going to keep me cool because my fevers spike at night, so leaving my room means a different sleep space but a...
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“As you grow older, you will discover that you have two hands, one for helping...”
– Audrey Hepburn
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Progress is Progress
Today I was finally able to drive the new car I (fortunately) got a few weeks ago. My side had been too swollen and painful to get in and out of the car comfortably, wear a seat belt properly, etc.
I figured since my jeans fit (albeit tightly, but we’re getting there!) now I’d go tackle the new car next. And I did it! It’s a beautiful ride, sooo smooth and so much better than my...
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Weekly Link Roundup 12/21/2011
Antirheumatic Drugs and Pregnancy: A Primer— A great overview of the consequences some antirheumatic drugs have when trying to conceive. The article covers drugs such as Methotrexate, Leflumonide (Arava), Hydroxychloroquine (Plaquenil) and others including some biologics. Thrive With RA, this one is for you, since you asked me a while back if I knew of any information. I’d also...
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Mystery Diagnosis: Pelvic Pain Edition
My issues with pelvic pain started nearly five years ago. My pain was ignored for years and what was deemed a non-issue became a serious case of Mystery Diagnosis. In recent weeks, even more so.
I was fifteen when I knew something wasn’t right. My periods were not like the ones my friends got. While they had cramps and could take Tylenol and move on after the first day, I got cramps,...
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FACT:
Rheumatoid Arthritis affects over 300,000 children in the United States alone and over 50 million others with autoimmune arthritis. Yet most people mistake this disease for an “elderly disease.”
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I Need Your Help!
My goal with Chronic Curve is to get it out there. For obvious reasons: CC represents a forgotten majority of people suffering like us with insufficient treatment and no cure(s).
I’m asking my followers to nominate Chronic Curve for the Wego Health Activist Awards in hopes of reaching more people and a bigger platform. It only takes a...
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Endometriosis Increases IBD Risk →
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Please help me reach a new platform and nominate...
Since starting ChronicCurve it’s become a mission of mine to spread awareness and make some noise for myself and for other patients suffering from the same ailments. I’ve been lucky enough to have had many doors opened for me because of ChronicCurve just since the summer, and I have most of you to thank for that.
The messages, comments, and emails I get full of feedback and love is...
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Autoimmune Truths
When I text you saying I am “too crippled to go out” and you may have to come to me, I’m actually not joking
Yes, this disease cripples. It has me confined to my house, to my bed or a chair, for most of my days (though I am hoping with treatment this will change)
Unfortunately people don’t realize that this disease is more than taking tylenol and moving on. And for...
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took a little trip today
MY JEANS FIT. The swelling is down enough that I am almost back to normal size. They weren’t exactly comfortable, but I made it work.
Visited Joe DiMaggio Children’s Hospital where I had surgery in September to bring cookies to the pre-op and peds. unit nurses. When I was talking to the nurse who helped me in pre-op, I completely lost it. No idea why; it’s not like me...
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Some RA Remission Criteria Underestimate Foot... →
December 15, 2011: “For patients with rheumatoid arthritis, remission criteria based on 28 joint counts underestimate foot involvement, compared with criteria which assess full joint counts, according to a study published online Dec. 1 in Arthritis & Rheumatism.”
More interesting thought-provoking research on this complicated “RA-remission.”
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I was invited to speak at a business 'thing'
on Friday about the past few semesters and what’s come to be with my health, what I’m working on, etc. It’s a great opportunity to spread some awareness and fill in the people that are literally giving me an education, but because of surgery/swelling…I still can’t wear pants.
This sounds so stupid, but how are you supposed to dress up when you can’t get out of...
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Weekly Link Roundup 12/14/2011
The Comparative Pain Scale — Ever find that a 1-10 scale just seems so vague? My RA pain might be at a 7 while my pelvic pain is a 3 and the muscle pain is x and back pain is y: where does that fall on a 1-10 pain scale? This puts the numbers into an easy to understand perspective, for anyone that is interested.
Better & More Affordable Treatments for Sufferers of Autoimmune...
I was reading an article on CNN Heath about a woman with an autoimmune disease here in FL who was dealing with insurance nightmares. Turns out we have the same doctor. I always smile when I see my physicians in the news. I am so lucky to have such a wonderful team of physicians that go out of their way to do so much good in the community. So lucky.
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“That is all I want in life: for this pain to seem purposeful.”
– Elizabeth Wurtzel
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Anonymous asked: I'm confused about the awareness colors.
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Endo and the Girl.: After reading a few articles,... →
endoandthegirl:
After reading a few articles, I’ve found that, apparently, the endometriosis-ridden woman tends to be a career woman with a high drive to succeed, prone to anxiety who puts more effort into looking after others than themselves.
It reads like an odd stereotype, having been a stressy perfectionist…
I’ve read this multiple times too! I wouldn’t say I’m a...
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Chronic Curve news: projects, new places, and a...
What you can expect throughout the next month, a project for my followers to participate in, and a surprise to be revealed shortly:
I’m working on at least seven new pieces that will hopefully fill up the Christmas/moving back to Tallahassee period of absence you’ll soon be aware of.
Chronic Curve is also expanding! Into something a little bigger, a little more professional, and a...
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Have I Spoken Too Loudly? Being a Survivor & Being...
Terminal illness vs. chronic illness; a lack of publicity. Refuse to be a part of the forgotten majority.
I blog to be honest. I blog to create conversation and make people talk, to spread awareness, to empower, advocate, and educate. I don’t blog to tell people only what they want to hear; I don’t know a blogger that does. That said:
...
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A Chronic Christmas: Gift Ideas for the...
Since it’s the Holiday season, here are some gift ideas perfect for the chronically ill loved one in your life:
Comfy PJ pants or boxers. Secretly behind closed doors, many of us live in them. I know I do.
Mix CDs/tapes with a great playlist: Music is a great tool for relaxation and a personalized playlist is always a thoughtful gift.
Netflix subscription or DVDs
Blankets/pillows: be...
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One Woman's Climb to the Top: "I'm a walking... →
A beautiful success story of someone plagued by Still’s DIsease (systemic RA/JRA) who, thanks to biologic medication, has turned her life around. Though there’s no cure, it’s always wonderful to hear a success story of someone with the same disease.
Here’s to hope for the rest of us.
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Latest Still's Disease News:
Whenever I go looking for new updates or research on Still’s Disease I am consistently disappointed with a lack of information. It is such a confusing disease with too many names that truly all mean the same thing, and leads to some serious confusion for patients and doctors alike, despite the symptoms being the same.
In the past month I’ve found a few articles, specifically ones...
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Dear Mum,
I was recently contacted by a few parents of children with JRA that have shared so much love for Chronic Curve, and I can’t being to explain to you how much it truly warms my heart to know that a simple blog has given a parent a better understanding of their child’s disease and how to better understand the complexities of chronic illness.
I went years in and out of doctor offices,...
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physical therapy didn't happen
Spent all of last night sick to my stomach
Spent all morning throwing up
Spent all day sick to my stomach
PT and vomit don’t mix.
but at least I have saltine crackers?
