Thanks to the recent news thatCFS patients were successfully treated by Rituximab, an autoimmune disease drug, the director of the Norwegian health department has said CFS patients deserve an apology for not being treated appropriately. The study verifies that CFS/ME is a treatable physical disease, with 2 patients who are completely recovered and back to work. Now let’s get the CDC to apologize too! Click the link above to sign on.
reblogging more for the NewScientist link rather than the petition. I think alerting people to the breakthrough is more important from my standpoint. Apologies, though necessary, can come second. First let’s spread the newest news.
My seniour year of high school was one of the hardest years of my life. In the midst of my medical and emotional turmoil, I started what has now become Project 10 Ten.
At the end of each day I would take out a journal and write ten positive things about my day. There were days I couldn’t make it to ten, but I tried. On days where I came up with nothing, I went back and read through old entries. Seeing what little things I had to hold onto in my life kept me going.
Instead of writing my ten things, I will be blogging them here on the Project 10Ten tumblr. You can also click the above image to go directly to the website.
This is a project in positivity, something that everyone needs, but especially those of us in constant pain who have a negative continuously hanging over us. It’s important to take a moment out of each day and remember why we fight through the pain.
I hope you join Project Ten. To learn how, visit the FAQ page on Project10Ten tumblr.
These are reasons for living; find them in your heart. No matter how bad a flare or hospital stay, a surgery or period of time, there are always little things to hold onto.
Please like and share the P10 facebook page here. I cannot get a like box or a username until I have 25 likes, so please help me out.
Sorry for the long breaks. I’m very sick all of a sudden and recovering from major surgery, so this will be the last and first weekly link roundup for a little bit. That said, a long-awaited Weekly Link Roundup!
Pat’s Fund— “Working to solve the autoimmunity puzzle;” Pat’s Fund is an organization that advocates for autoimmune conditions by educating, increasing awareness in our society and funding research into autoimmunity— something we all know there needs to be more of. The fund was founded in 1999 after the passing of Pat Barnes from an autoimmune condition that affects blood platelets. Check out the site to learn more about where 100% of their proceeds go to and how you can get involved.
Invisible Disabilities Association— IDA is a non-profit organization that encourages and educates others on invisible disabilities and works to bring them out of the dark by connecting people and organizations together internationally. Offering everything from awareness bracelets to books and pamphlets to educate family and loved ones on what it means to have an invisible illness, IDA is one of the leading foundations advocating for hundreds of these illnesses. They also have some great projects going on: Service Animal Awareness, My Invisible Disabilities Community, among seminars with foundations, hospitals, business and support groups. Check out their site for more information and a vast amount of resources and IDA events to help you and your loved ones adjust, cope, understand, and educate others on what it means to suffer invisibly.
Empowering Caregivers— Founded in 1999, EC provides a safe-haven of sorts for caregivers of children, adults, and elderly by providing copious amounts of resources and articles, recommended reading lists, even writing exercises to help the caregiver understand and work through difficult emotions rather than letting it damage their emotional state or relationship with their loved one(s).
Working With Chronic Illness— Struggling with finding the right job knowing you have a disease that could flare at any moment? I know it’s a terrifying prospect for myself anyway. Check out WWCI, perhaps you’ll find the advice and guidance you need to handle your career and chronic illness well.
Blog of the week: Prednisone Support— exactly what it sounds like; a blog made for others to commiserate and cope with a drug that works miracles on symptoms but causes its own awful chaos. Moon face, anyone? Check it out.
I’ve gotten quite a few messages now asking why I don’t blog specifically about AIDS/HIV, Fibromyalgia, Crohns or Multiple Sclerosis.
I don’t have HIV/AIDS or those autoimmune diseases, so while I blog about coping skills and things relevant to allindividuals with chronic illness, I am not in a position that is appropriate to write specifically in depth on diseases I am not 100% familiar with, like I am Autoimmune Arthritis, Lupus, Scoliosis, etc.I have a large audience and I don’t feel it is appropriate to provide information I am not 100% familiar with. Now that’s not to say I won’t post an article about those diseases, I just will not write in depth about them myself, for the sake of my audience.
That does not mean this blog is not for other diseases— it is for all chronically ill sufferers looking to empower, educate, and advocate— blogging just has to be (and should be) done with discretion and sensitivity.
Chronic Curve is about taking control of your disease to the best of your ability. It is about becoming your own advocate and finding your voice in a very big and overpowering health care system. It is about coping, resources, and knowing you are not alone. It is about writing articles that are relevant to all chronically ill, so they can be shared universally with the tumblr, facebook, and blogspot community to help each other. They are not to be copied, stolen, edited, or reposted without permission and proper citation. This blog is not to be replicated.
I work so very hard to keep this blog up to date and full of relevant resources, information, DIY tricks, tips, and to help others. When I first got sick, I found not a single blog like Chronic Curve— run by a college student who wanted to own her disease, not surrender to it. I looked for a blog that shared weekly resources and wrote articles or posts about what my world was going to become and how to cope, what to do, how to become a strong and empowered patient. No such blog existed. So I created what I couldn’t find. And I don’t say that with any arrogance or in a pompous manner, either. I couldn’t find what I was looking for so I made it, hoping the next person in my position could find what I looked for eight months ago. That is why Chronic Curve is the first of its kind.
I am a student with multiple chronic conditions. I am a jewelry designer and I am a huge science nerd. I have multiple diseases; the diseases do not have me. That is what Chronic Curve is about. Being a student, a parent, a sister, a soccer player, a musician, a warrior, a sufferer, all with chronic conditions but owning their illnesses and lives. It’s about standing up and not suffering in silence and being invisible, twiddling thumbs waiting for someone else to come up with better treatments or a cure. If there is no demand, there will be no return.
So regardless of what you suffer from, if you want to own your disease, if you want to demand better treatment and cures in our society and medical community for autoimmune conditions, if you want to read my College and Chronic Illness chapters, if you want to read about doctor education/communication and learning to be a patient advocate, if you want weekly link roundups with new resources, if you want to learn about autoimmune research, if you want to share your resources in my inbox for me to post, if you are a healthy loved one trying to learn and understand what the chronically ill have to live with or how to help yourself, if you want to empower, advocate, and educate, then you are a part of Chronic Curve.
EMPOWER: yourself, others, your community ADVOCATE: for your disease, for autoimmune conditions, for invisible illness EDUCATE: yourself, your loved ones, your community
This is not about one disease vs. another. This is about coming together in one of the first communities there is on tumblr to do so.
Hopefully this clarified why CC exists and what it stands for, why I blog and write the things I do, and who I aim to help. I’m sorry for being so slow with questions lately; please give me some time as I recover from from my surgery and cope with my own flare. I hope you all are well and as happy as possible tonight,
I listed as many autoimmune, invisible illness, autoimmune arthritis, and RA bracelets as I could find (we all know there aren’t many). I do continue to keep looking, and have a relevant special project up my sleeve that I can’t reveal yet, but in the mean time:
Well I’ve found another one and added it to the list, so check it out!
When you have major surgery involving basically being sawed in half on two different planes of existence, (add to that a flare and a shitton of medications) your hormones will go insane. Not for everyone, but for a lot of people. I am one of those people.
asking why I haven’t replied, or posted this or that, or about missing link roundups.
My body is in hibernation mode. I’m sleeping constantly and am not on the computer long enough to put together round ups. I literally keep nodding off with my laptop open. All recent posts are ones I had saved in drafts. If I have a good day, I’ll update, but please be patient with me while my body recovers from this surgery and I deal with this flare.
hey i was wondering, if there was any way you could follow me back, id love to reply to some of your great posts!! I love your blog!!!
I’ve been getting this message a lot lately. I don’t ever mind following back, but since the surgery and this flare I’ve been sleeping almost constantly and most of my content is queued. I have installed Disqus. Just click the comment button at the bottom of each post and anyone can comment whether I am following you or not :)
I have yet to experience this myself in person, probably because I do not know anyone in real life with a chronic disease similar to mine nor do I generally socialize with the people in waiting rooms (I usually happen to be the only one over 70 there) or randomly talk about my illness, but I have been a witness to a strange type of competition between the chronically ill. And it startles me.
Whose symptoms are worse, whose labs are higher and whose kidney function is worse; whose pain is more intense. There’s this competition to prove that one’s chronic suffering is worse than the other person’s.
That is one competition I would gladly lose.
But if you sit down and analyze the phenomenon, is it really all that surprising that there is an air of competition? Perhaps competition is the wrong word; maybe the right word is desperation. A desperation to legitimize and prove that their pain, illness, suffering, deformity is in fact real. Why does this come off as a competitive stance? Because the chronically ill fight to legitimize their conditions to those that are not sick every single day. We have to convince our friends, family, and often doctors for months, years, decades, before someone takes us seriously and for many individuals it takes decades to simply get a diagnosis, all the while we have to fight to prove our suffering is legitimate. We have to prove that our pain is real even when there is no blood or wound to visualize it; to prove that we are not drug seekers when we fill prescriptions for large quantities of medication; to prove that we are not malingerers. Sometimes it is difficult to remember who we don’t have to prove ourselves to. Sometimes chronic illness creates a bitterness in one’s heart.
So the next time you encounter another chronically ill person who puts on their boxing gloves and puts up that defensive wall, try reminding them that you’re on the same team. You’re in the fight together to end the invisibility in our community and bring the sick and healthy together in education, understanding, and awareness. Let them know they can put those fists down; it’s not a competition.
If they aren’t receptive, who knows, maybe it will sink in later when they are alone and vulnerable. Or maybe not; maybe they honestly do think they have to one-up everyone else. But if that’s the case, that is one ball of negative energy I do not want any part of.
Brownies are in the oven, Valium is in my system. Hoping the lovely smell will spark my appetite. I’ve been sleeping about 17 hours a day since I saw my doctor on Tuesday. Here’s an update: First post-op doctor visit, hiccups, and the weirdest referred pain ever…
On Tuesday, I saw Dr. J, my spine surgeon for my first post-surgery appointment. It was actually two appointments in one— my sister has a slight curve and was being checked as well— and it was nice to have her with me for the long, painful, yet productive four hours.
After four x-rays and being poked and a car ride, I had hit my pain level limit. They removed the staples while my mum video taped it (yes I’ll post it). Other than a few staples that got stuck the actual removal didn’t hurt too bad.
The steri-strips originally applied to my back after surgery had all fallen off, so they re steri-stripped my back (for those of you that don’t know what steri-strips are, they’re like adhesive stitches that hold the skin together and help the scar heal faster and make it more aesthetically pleasing). They steristripped the side incision as well.
The x-rays looked good; no abnormalities. In fact, there is some speculation that removing the rods actually increased some disc space (where I still have discs, that is) and that is excellent news and could prevent further nerve impingement. I’ll know for sure if that’s the case next week when I call my doctor for confirmation. The rice crispy feeling I’ve been having when I breathe is from air and fluid trapped in the cavity between my lungs and incision that accumulated because I did not have a chest tube after surgery. At the time I lucked out and didn’t need one and the trapped fluid and air will go away in time. It’s not enough in quantity to cause a problem other than drainage and an uncomfortable sensation.
Since the surgery I’ve had excruciating pain on my shoulder blade, so severe that up until the other day, I wasn’t able to have any fabric (hospital gown) even lightly touch the area or it felt like my skin was being lit on fire. I knew it was nerve-related, but it turns out it’s actually related to my diaphragm healing. Talk about strange referred pain. It’ll take some time for the nerve to heal (along with other ones that were affected by the operation), but such is recovery.
By the time I got home from the appointment I was exhausted. I took a painkiller and slept from 5PM-8AM, and then awoke to find my body was paying for the ordeal. It was a bad day today, probably the worst since being home. After some tears and enough drugs to kill the awful pain, I slept nearly the entire day away. In the past two days, I’ve probably been away for nine hours total, not consecutively. I’m up now because my fever is spiking (RA related, not infection) and I’m trying to lower it, but I’ll be asleep again soon.
It’s a bit weird; normally when I flare like this I’m equally as exhausted but I have a hard time sleeping. Thanks to the meds, I’m sleeping like crazy. Way past hibernation at this point.
Oh, and if anyone makes me laugh I immediately get the worst case of hiccups imaginable. Problem being that my healing diaphragm does NOT appreciate the spasm and it is possibly the most painful thing ever. Only valium makes it stop, and I can only take that every six hours, so…
Despite the rough recovery, I’m healing well, can wear t-shirts now (albeit absolutely giant ones), escaping infection, and staying positive. Oh, and my sister’s curve remains small and unchanged :) No bracing or surgeries for her (she got the good genes).
Hope everyone is well & had a happy World “Arthritis” Day!
“When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history it becomes more beautiful”—Barbara Bloom
Recently Dr. Phil made the statement that obesity can cause Rheumatoid Arthritis, suggesting that obesity is a risk factor for the autoimmune disease. Obviously this statement is 100% false.Thanks for the effort of hundreds of volunteers who sent letters and comments asking for correction, Dr. Phil has publicly retracted his incorrect statement and information on his blog here.
By the way, if you recently heard me discussing obesity and rheumatoid arthritis (RA), another devastatingly painful form of arthritis, on Dr. Phil or The Doctors, I actually misspoke. I meant to say obesity can complicate RA, not that it can cause RA, which is, of course, an autoimmune disorder that is systemic, affecting the whole body, not only joints, but soft and connective tissues and, in some cases, organs.
So thank you, Dr. Phil, for not only correcting incorrect information but for spreading awareness and educating those who read your blog on what autoimmune arthritis is. :)
World "Arthritis" Day 2011-- The Forgotten Majority
While I love that this movement exists, I am once again frustrated that Osteoarthritis and Autoimmune Arthritis are being lumped into the same category. It’s true that even when I explain the difference, 9/10 it is disregarded and my autoimmune disease is still misunderstood and mistaken for an elderly “naturally occurring” disease.
On October 12th, it’s World “Arthritis” Day. IAAM puts the word “arthritis” in quotations to highlight the fact that over the years the word has become a generic term for all strands of arthritis. This has led to a gross misunderstanding that ALL arthritis can be treated by over-the-counter medications or simple diet adjustments (see example below), that ALL arthritis is merely joint pain and that ALL arthritis is caused by old age, wear and tear, or injury. In fact, seven out of over 100 types of arthritis are classified as Autoimmune Arthritis diseases, which are serious, systemic diseases that involve the whole body, including organ involvement…
After reading about the campaign on the Arthritis Foundation’s website here, it is unfortunately and painfully obvious that World “Arthritis” Day is focused on OA. To quote: “Join the Arthritis Foundation community in supporting the 27 million people living with osteoarthritis.”
It seems that once again, the forgotten majority exists in silence. So as a part of the forgotten majority, it is our responsibility to step up and join IAAM in their mission. Here’s how:
Please forward/reblog along this post
Please highlight the differences between Osteoarthritis and Autoimmune Arthritis
Please advocate for your cause, write a quick blurb about what it means to have autoimmune arthritis, or post resources that explain your disease
Purchase a wristband from IAAM
Wear blue AND purple to represent all types of arthritis.
Please STAND UP and be an advocate for Autoimmune Arthritis.
the events of the past two weeks are finally catching up with me
and between my immune system and the surgery, I’m absolutely depleted. In and out of sleep constantly, so please excuse my lack of posts for the next little bit. I see my surgeon for my one week follow up to see how the incisions and whatnot look. For a few days there the side incision looked a bit infected, but with diligent cleaning I think I’m in the clear.
if you haven’t liked Chronic Curve or The Leighton Pearl facebook pages, I’d lovelovelove if you would like it and share :)
The Leighton Pearl: it has been a long time coming...
but I am finally relasing a full jewelry line,The Leighton Pearl. Etsy shop is up and running so please please please like and share the facebook page with your friends lists— this is my job/sole source of income and I would appreciate any attention I can get.
Click through for the facebook page, which will also direct you to Etsy:
Posting my personal recovery/surgery-related posts under cuts. When I’m home and better able to I’ll go back and make these easier to read. For some reason this layout requires extensive html editing and that’s too much effort for me right now ;)