Hey, Emily! I just posted something to my personal blog (WheelieWifee) that was inspired by the post you made about the "Love Yourself More" challenge. Your words continue to motivate and encourage me. Thank you for all you do.
Lovelovelove it! Beautiful! Will definitely reblog and share with others. Thanks for taking the time to share this with me, write to me, and inspire me equally! It’s incredible how much power words hold, especially when used for something positive :)
I do, but I also like to keep that blog and this blog very separate. If you message me off anon and ask me for the link, I’d be okay sharing it. It’s mostly just a collection of things that inspire me in any which way. Lots of music, quotes, photos, artwork, lists.
the Q&A video had some issues, so I’ll be doing that at some point, but not soon. Not quite sure if I like vlogging— putting my face out there is a bit weird for me and I’m still trying to get comfortable with it as more people I know in real life ask about the blog.
Hello. Sorry I've been all up in your Ask lately but I had one more question. I was wondering if you use(d) a cane, and if so if you brought it up with your doctor, or if your doctor brought it up with you. I'm having a lot of trouble walking - I've gone from occasionally limping to constantly limping - and as of yet no diagnosis (suspected fibro but they aren't all that sure). I feel like a cane would help but I feel almost silly bringing it up with my doctor. Thanks for any input you have :)
I don’t use a cane because my hands are too unsteady and painful to grasp it or put pressure on them, but my legs need it. Like you, I walk with a limp or a waddle and could use the support.
My doctor actually offered me one, so I didn’t worry about bringing it up. If you’re nervous about asking, tell someone you feel comfortable with and ask them to be in the exam room at your next appointment. Tell them not to let you leave without saying something, and if you don’t speak up, instruct them prior to the appointment to say “aren’t you forgetting something?” in front of your doctor so you can’t back out! That would be my best bet. Or, can you email your physician or call his/her nurse or assistant and ask indirectly? Sometimes writing is easier than asking in person. But don’t wait to ask and don’t feel silly bringing it up. People do it all the time, and besides— you can decorate your cane and make it look badass ;) Good luck! Let me know how it goes!
I was wondering what your take is on anti-depressants and anti-psychotic medications given to patients with terminal illnesses such as cancer or AIDS? In my opinion they work if taken correctly along with the proper therapy but at what point or dose will the body be able to be happy without any of those medications? And even if the medications work, the circumstances in which the person is in keep piling up, how does one over come this?
Anti-depressants and anti-psychotics are used for an extremely wide variety of ailments; which are you referring to? If you’re referring to using them for anxiety and depression: I think they’re absolutely helpful for those with terminal and chronic conditions, especially with the crippling anxiety and depression that often comes along with a terminal/chronic diagnosis. I myself use Zoloft and it does wonders for me, but it doesn’t result in happiness; it makes it easier for me to stay positive, get through my anxiety with learned coping skills, and allows me to work through the depression that comes and goes with illness. I don’t think a certain dose alone is going to make someone happy. Anti depressants/psychotics are not magic medications. So at what dose do I think the body will be able to be happy..? I don’t think there is a dose. I think being happy, especially in the face of a dismal prognosis, has to come from within, not entirely from a pill. Like you mentioned, I think therapy has a bigger part to play in finding “happiness,” but I also think it’s important to focus on the journey to finding peace and happiness rather than the end goal. Aside from therapy, changing your lifestyle, your thinking patterns, maintaining positive relationships with people in your life and with yourself— those things help. Maybe we don’t overcome it, but rather we coexist with it. And when you can coexist with it peacefully, happily, maybe that’s when we find what we’re looking for, maybe coexisting equates to overcoming it. Have you read How to be Sick by Toni Bernhard? I highly suggest it. It changed my life and helped me learn to cope with the circumstances that continue to pile up. Whether you yourself are ill or not, it’s really a guide to living. I hope this helps, but it’s just my input and I hope you find what works for you. I’d love to know what you think. :)
I found close handicapped parking on campus and at the store
Dove chocolate at Publix was BOGO
All the groceries I went to buy were on sale
I made it through the grocery store without feeling like fainting
I sat in a metal chair for two hours, something I could not have even thought of doing before my spine surgery in September
Not needing pain medication until 6pm
It’s always the little things that mean the most to me, that give me a sense of normalcy, routine, and stability. The little things that make me feel like I can conquer tomorrow. Having new friends that understand you and are able to laugh with you always helps too :) What little things do you treasure or make pain more bearable? What makes your good day good?
"Adrienne Rich, a pioneering feminist poet and essayist who challenged what she considered to be the myths of the American dream, has died. She was 82.
The recipient of such literary awards as the Yale Young Poets prize, the National Book Award, the Ruth Lilly Poetry Prize and the Dorothea Tanning Award given by the Academy of American Poets, Rich died Tuesday at her home in Santa Cruz of complications from long-term rheumatoid arthritis, said a son, Pablo Conrad…”
Click to read more about this incredible woman’s words and legacy.
I’m often asked why I don’t post about POTS, Diabetes, Cancer, ME/CFS, Lyme Disease, etc, like I do Rheumatoid Arthritis, Lupus, Sjogren’s Syndrome or FMS. I’m asked why I don’t write “in depth” posts specific to the former disease(s) listed.
Here’s why: I do not have POTS. I do not have Diabetes or Cancer, ME/CFS or Lyme Disease. When I write, I write an article that can be relevant to all or most chronic illnesses, but I will not write an in depth post about a disease that I do not personally have experience with and therefore am not knowledgeable about.
I will post outside links/resources for diseases I am not familiar with, but not without doing some research and talking to people who have the diseases to make sure I am posting accurate and appropriate information. Generally, I will not post a link related to signs and symptoms of a certain disease. I will, however, post a link related to a genetic discovery or new finding/research.
It is a huge problem when chronic illness blogs post a “General Symptoms/Signs of ______” when the writer does not have any experience with the disease. Anyone can go on to WebMD and learn about a disease, but not everyone can write an article about a disease and really know how to best describe it or do it safely. Especially with Rheumatoid Arthritis. Most articles that come up via Google search fail to disclose over half of common symptoms: fatigue, weight loss, fevers, organ involvement, etc. Sharing the wrong information online can be harmful.
I have written about this before and I’ll reiterate it again: I once found a Scoliosis-related tumblr run by some teenage girls who were claiming milk could cure and prevent Scoliosis. Anyone with Scoliosis should immediately realize this information is a load of crap, but for a handful young, impressionable, adolescent patient-followers that were believing this without doing any research, consulting with parents/physicians, this pseudo-science was harmful. Now magnify that kind of situation with more complex conditions and thousands of followers. See where the concept of doing more harm than good comes into play?
DO & DON’T:
DON’T post outside resources that do not adequately portray a certain disease, lack information/symptoms, or suggest a cure for an incurable condition (discussing a treatment is different than a cure)
If you’re unsure about an outside link, ask someone who would know if it is a good resource or not before you post it.
DO refer a follower or anon to a blog that is specific to the issue if you are not qualified to answer it.
DON’T just do some reading about a condition online and write about it as an expert.
DO send a message over to Cranquis for some anonymous physician input (assuming his ask box is open ;)
DO have a disclaimer on your blog that addresses the purpose of your blog’s content
DON’T copy and paste a blogger’s post; reblog and cite the source
DON’T steal an idea and use the same title and content unless it’s medical information-based rather than opinion/personal, and even then: write it in your own words and cite the person who inspired you to write the post/gave you the information.
DON’T change the name of a post when you reblog
DO alert other bloggers when you include their links, information, or quotes in your own material
Most of you are not young teenagers and those of you that run blogs similar to mine in purpose need to be aware that you can do harm through the internet, especially when blogging about chronic illness. It’s disheartening to see people rely on poor information or the internet instead of seeking out a physician’s (or multiple) opinion or taking that information to the physician. It’s disheartening to watch impressionable adolescents dealing with a scary diagnosis receive false hope. It’s sad.
If you’re an Autoimmune Arthritis blog, stick to writing in-depth articles about what you know. If you’re a Neuroblastoma-related blog, stick to writing about Neuroblastoma. I wouldn’t go writing an in-depth post about cancer; I would instead post a link to a blog with an author that is qualified to write about cancer.
If you’re going to be a chronically ill blogger and post more than just your own personal experiences (i.e. sharing outside information), you have a responsibility to not misinform people, or correct your content when a mistake is made. As a follower, don’t be afraid to question what you read, discuss it with physicians, and take everything with a grain of salt. It’s okay to send a message to a blog pointing out that an article they posted is flawed or ask a question about something you’ve read. I have followers do it (and I’m grateful for it!), and I do it to other blogs. It’s not about being pompous, malicious, conniving; it has nothing to do with competition or being negative. It is about making an online community of chronic-bloggers a safer, more knowledgeable and aware place. This is another part of being a patient advocate. No chronic illness is a one-fits-all deal and any blog that doesn’t acknowledge that in their content is only doing their followers a disservice.
You've probably been asked this before, but how do you deal with being called a hypochondriac or being constantly told you're exaggerating (or when it's being said behind your back)? For that matter, how do you deal with it when it's *a doctor* telling you it's all in your head? (Also, thank you so much for your blog. It means a lot to your followers, or at least it does to me.)
I went through this for years. The only thing I know to do is fight through it. Most importantly, never settle. Find a new doctor. Keep searching. Seek out third, fourth, fifth opinions. Finding a doctor to look out of the box isn’t easy, but it is possible. Your best bet is to read up on physicians, ask around on forums and look at various online organizations for well recommended physicians. Hold onto hope, hold onto your sense of self, stay strong, stay focused on finding answers, and find an outlet. Take things one step, one day at a time. For me, when the hypochondriac remarks were made behind my back, I just let them go. If the person making the remarks is someone you consider a friend, perhaps it’s time to reconsider their presence in your life. Chronic pain and illness taught me that valuable lesson, that letting things go was necessary or the emotional stress would just make the physical ailments worse. Confronting it made it worse. Seeing a psychologist who I could discuss it with helped me too; have you considered this? It’s helpful to have an outside perspective and someone to teach you coping skills. Thank you for reading :) I’m glad it means something to you. Let me know how things go, don’t give up, and best of luck.
Exams weekly through the rest of March, through April up until finals week
Seven papers to complete
Plus typical course load work
With a side of brain fog/fatigue.
I’m behind on email and messages so if you haven’t heard from me yet this (^) is why, but I will get back to you. Yes, I am in fact procrastinating studying for a large extremely ginormous and important exam tomorrow by creating this post… Lots of queued posts, but expect some delay in returning emails/messages.
This may sound like it doesn't help, but I have an aunt who is an RA and who was able to do my injections for me when I trialled both Enbrel and then Humira. If you can, use a syrine and not a injector-pen, it's much easier to control the rate at which it goes in and lessens the pain. Also, it sounds lame but deep breathing DOES help A LOT, along with counting down from a high number and wiggling your toes all help to distract and lessen the pain.
I actually did switch from auto injectors to syringes when using Enbrel and it did make a difference, but I stopped Enbrel because I developed an adverse reaction to it. Right there with you about the deep breathing! Thanks for the tips!
Wego Health Activist Writer’s Month Challenge— Starting April 1st, 2012, health activist writers who take the challenge will have 30 days to complete 30 prompts! Interested in taking the challenge? Click to know more. If you’re signed up and ready to go, don’t forget to share your posts on the WEGO health facebook page and tag your posts on twitter with #HAWMC
Lupus Research Institute on Hill Advocating for Professional Training on Lupus— The need for widespread education has been confirmed by a new study of ~1,000 people including lupus patients, loved ones of people with lupus, and rheumatologist, that shows patients often downplay their symptoms to physicians and loved ones. The findings? 87% of patients report downplaying symptoms to their families. 52% report minimizing symptoms to their physicians. Nearly 3/4, or 72%, of physicians did not believe their patients minimize symptoms. Read more to learn about how the LRI is working to close the communication gap.
Calling All Rheumatologists— The number of patients is growing, yet the number of rheumatologists is dwindling. Did you know there is a shortage of rheumatologists? Though this article is dated 2011, the shortage is still around, perhaps worse than before (something I will write about shortly) and especially so for pediatric patients. There are as many as 10 states that have no pediatric rheumatologists whatsoever, but there is hope. Click to read about what the American College of Rheumatology and other groups are doing to encourage an increase of rheumatologists!
Are there any blogs you think should be considered for Blog of the Week? Send me your links!
The Human Pin Cushion: Tips for Making Self Injections Easier
No one likes having to do weekly (or daily) injections. Some hurt, some sting, some smell, some make us sick, and all make us uncomfortable to some degree, but I’ve picked up a handful of tips over the past eight months that I hope those of you just starting injection therapy might find useful.
Do you struggle using your hands to hold a syringe or vial? Talk to your doctor andpharmacist about alternative options for syringe types and vial sizes.
Always have someone else watch and learn how to administer your injection, just in case you for whatever reason are unable to do so yourself.
Before you inject yourself, practice on a plum. I am completely serious. Ask your doctor for an extra syringe, take it home, and practice darting the needle into the plum. The consistency is much like your own thigh, arm, and stomach, and will ease a bit of the nerves prior to your fist injection. Do it as many times as it takes to feel confident in your darting abilities, then move onto the real deal. Ask the close friend or loved one you want to learn how to do injections to practice with you.
Use water to get an idea of how much medication you’ll be drawing up into the vial. Get comfortable with the tools.
Create a clean set up with a band aid, alcohol swabs, a sharps container, all of your materials, and make sure your hands are thoroughly washed. After hand washing, use hand sanitizer for extra measure (tip from a nurse).
After cleaning the injection area properly, allow the alcohol to air dry before you inject. This will minimize burning from the alcohol going into your skin with the needle.
DO NOT blow on the area to make it dry. This defeats the entire purpose of cleaning it with an alcohol swab
Have someone with you for your first injection, especially if you know needles make you feel even the slightest bit queasy or dizzy.
Reward yourself after you complete the injection(s). You deserve it.
If you are sensitive to preservatives, do nothesitate to ask your physician and pharmacist about preservative free medication. The set-up process may be different, but the option is out there.
Specific to Auto-Injector Use:
DO numb the area with ice if you feel the need. There are also prescription creams available to help numb the injection area.
If you find the speed of the auto-injector or preservative to be painful, DO count the seconds out loud, perhaps yell them, while the injection is taking place. Focusing on something specific, like the seconds until you hear the click of the pen, helps if you find the injection to be painful.
Specific to Refigerated Medication:
If directed to let the medication come to room temperature prior to injection, roll the syringe or auto-injector in your hands. This will warm it faster and more efficiently.
When taking Enbrel, I let the auto-injector pen sit out 15 minutes longer than instructed per advice of an Enbrel assistance nurse. It made a difference, so don’t be afraid to call up your pharmacy and ask for advice!
RELAX. If your muscle is tense during the injection, you will find it more painful. Use deep breathing exercises, visualization, and relaxation techniques to help your body relax. Imagine your actual muscle in a relaxed state.
Calm music or a quiet environment is key if you are nervous or tense. Ask any distracting loved ones to leave the room or go into a secluded area.
What are some tips you would give to others just starting a new injection therapy?
Hello, not really a question but a comment. You will likely think me crazy but I thought I would share anyway. I believe that there is a spiritual component to most if not all disease. That said I believe that there is a strong connection between Arthritis and Bitterness/Unforgiveness specifically. I have watched a person release some of these things and they did gain some relief from doing so. If nothing else we all know stress is not good for the body or the strength of the immune system.
Actually, I don’t think you’re crazy at all. It is known fact that stress worsens and contributes to autoimmune conditions and general health and wellness. Bitterness/unforgiveness is just emotional stress and I know personally that eliminating stressful people and situations from my life has helped my health tremendously! It is by no means a treatment for symptoms or a cure, but stress management is vital to anyone dealing with any kind of chronic medical condition. Thanks for the input :)
I fell while mopping the kitchen floor last night. I fell hard, without using my hands to take the fall, directly on my knee and then fell back onto my left side/hip. And now I feel like I’ve been attacked by a steam roller. Ever have days like this?
My knee is huge.
Today is a bed bound day, and I’m not fighting it for even a second
Unexpectedly, study results suggest increased body fat induced by a high-fat diet did not influence the severity of colitis, despite changes in hormones that are known to increase with obesity and influence inflammation. In fact, researchers found calorie-restricted mice had a higher mortality rate…
For the few of you (Hannah) that this will be of interest to: click the title to read more at Science Daily.
I saw my rheumatologist on the 5th. It was a long appointment (that I wrote about here)— we spent just over an hour discussing just about every aspect of my chronic illness and state of being. If you have been following this blog for a while now, you may be aware that I have been in a downward shift since my surgery in September, and even more so since I moved seven hours north and went back to university.
As my doctor and I discussed this downward spiral and the first half of Spring semester, I saw something in her I had not seen before: cracks.
I confided in her about having to sacrifice my lifelong dream of medical school and explained that I am failing a relatively easy class due to the brain fog and cognitive decline. I could tell it disappointed her to hear this. She looked up from writing in my chart and said, "It might not always be like this."
It’s just that one word: “might.” Up until this point, my doctors had all been very firm in language that I would find a medication that puts me into remission. Was very firm in her comments that I will get my life back. She was fighting for me and has been a true RA Warrior right along with me. This was the first time it clicked for me that she and I both are on the same page: the disease is incurable. There’s nothing like having seven words put your denial in check. For the first time in a long time, I was literally frozen with a moment of panic— What if I continue to get worse like this for the rest of my life? The fear, the panic…it’s paralyzing. It truly takes your breath away to think about another sixty or so years of suffering and pain, of hair loss and rashes, of brain fog, of doctors, tubes, tests, needles, infusions, surgeries, scares, hospital stays… The only thing I can compare the feeling to is the most terrified you have ever been from a single thought: perhaps the first realization that death means not existing, perhaps the though of losing a loved one. That moment when you (literally) shake the thought out of your head because the fear of something so unknown, so unprecedented is fully encompassing? That was what I felt in that moment and at the same time, I felt my own confidence crack; what if I’m one of those patients that doesn’t respond to any medication, ever?
And then of course I go back to repeating to myself: well, what if I am one of those patients that does respond to medication? And I go back to holding onto that little bit of hope that remission—whatever “remission” really means— is possible. I remember that there are gems to be found, people to be treasured, things to enjoy despite a lifelong battle with my immune system, and I’m okay again.
Seeing my physician show her disappointment, however startling, let me know that I have the right doctor— someone that understands this disease— the real disease, not the seemingly benign list of symptoms you read about in the news or see on pharmaceutical commercials— and cares enough to be disappointed when I don’t respond to treatment and decline rapidly. But it also made me think back to that article I posted last month written by a physician to patients with chronic disease and how my own physician must feel, knowing that her patient is not responding as well as we hoped to her treatment plan. As hard as it is for us as patients, we cannot deny that it is equally difficult for others to watch many of us lose parts of our lives, dreams and much of our identities in the process. That’s not to say we don’t gain new life lessons, opportunities, and identities—we do—but there is a constant cycle of loss and grief that our loved ones and perhaps our physicians, in their own way, endure with us.
This also leads me to a recent NY Times article I read discussing the struggle physicians face over telling the truth and finding a balance with transparency and truthfulness. Where does a physician draw the line between giving a patient false hope and taking away hope?
While a majority of the nearly 2,000 doctors polled believed that physicians should never lie to patients or fail to inform them of the risks and benefits of a procedure or treatment, a large number also revealed that they had not been completely honest or transparent over the past year. More than half had described a patient’s prognosis more optimistically than warranted. More than 10 percent had said something untrue.
I appreciated my physician’s honesty and transparency, and studies suggest that most patients prefer this to be the case as well. When dealing with terminal diseases in both senses of the word, a lack of transparency feeds not just false hope (which isn’t always a bad thing. Hope in the face of suffering gives patients a reason to persevere), but a lack of understanding of the disease and its severity. When I was initially diagnosed, I had no idea that this had no cure, could impact every part of the body, and often does not respond to treatment in the way I thought it was supposed to. I wish someone had been upfront with me about this rather than me discovering this over time and by interacting through other patients. I was hardly emotionally prepared for this journey when first diagnosed, and I do believe that even just a bit more honesty and transparency would have been helpful, perhaps with the suggestion to seek out a psychologist to help me cope with the upcoming challenges I was about to endure.
For my physician readers, how do you find this balance in your practice? For my patient readers, what do you prefer in a physician? Someone that acknowledges that the disease often does not respond to treatment and has no cure? Or someone that is less likely to acknowledge these hard facts and feed you the hope you may or may not need? Is there a balance?
Have you experienced a similar moment? Share your thoughts below!
It’s been a busy month for all things rheumatic/autoimmune diseases.
For those that haven’t heard, March is Autoimmune Diseases Awareness Month, started by the American Autoimmune Related Diseases Foundation. Click on the link to find an Autoimmune Disease Awareness walk near you or get involved.
With the spotlight on autoimmunity this month, celebrity Nick Cannon has generated some much needed awareness and attention for Lupus and despite his very recent diagnosis, is already working with the Lupus Foundation of America. You can read about his ordeal here or follow his or the LFA’s twitter for quick updates.
A new breakthrough medicationthat “blindfolds” white blood cells from causing damage seems to be promising for Rheumatoid Arthritis/Rheumatoid Autoimmune Disease patients.
Also new on the RA/D front, Airway Abnormalities May Represent Preclinical Rheumatoid Arthritis. Author Bruce Jancin of Rheumatology News reports “increasing evidence [suggesting] that RA is smoldering in the lungsduring this preclinical stage, which can last a decade or more.” The article goes on to discuss the role of Methotrexate as a preventative agent and the significance of the findings.
News Rheum Action: Looking for some easy ways to get involved?
Registration for the very first World Autoimmune Arthritis Dayhas begun. WAAD will be held on May 20th, 2012 as an international online awareness event. Registering and participating in the event allows you vendor discounts, a chance to submit your story, and much more. Get involved!
A Feminist Perspective on Rheumatoid Arthritis— It’s a known fact that autoimmune diseases such as RA, Lupus, and Fibromyalgia tend to strike women much more frequently than men, but why haven’t we figured out the specific reason for this? Would this disease be closer to the forefront of more research if it impacted the same amount of men as it does women? How does the psychologizing of women’s symptoms contribute to Rheumatoid Arthritis, Lupus, and Fibromyalgia? This is exactly what author Leslie Scott wants to find out. A thought provoking read for all gendersthat poses some interesting questions.
UF Researchers Target Traitor Proteins— Researchers at the University of Florida have concluded that roughly one American out of 10 has “traitor proteins” thought to cause lupus, scleroderma or other autoimmune disorders in their blood, while also finding that the autoantibodies were less common in overweight and obese individuals than in people of normal weight.
How Would You Design an Arthritis Clinic?An ideal autoimmune arthritis clinic as designed by rheumatologist Dr. Irwin Lim. Read what Dr. Lim would like to see included, and add your own input/answer his questions in the comment section.
Blog of the week:Rheumatoid Twenty Something— Meet Joseph, a 23 year old Rheumatoid Arthritis/RAD warrior. His blog is relatively new and comes with a perspective that is not so common in the tumblr community, seeing as the majority of RA/D bloggers (and patients) are female. Be sure to follow his journey and check out his post on why social media is essential for support.
Since I’ve received some not-so-nice/appropriate emails this week:
There was a postage screw up on ALL of the bracelet orders and they were returned to sender (me) last week after having been sent out sitting who knows where for weeks at a time. I will not be using the same post office since they gave me the wrong postage amount (utter ridiculousness) and ALL bracelet orders will be, once… again, shipped tomorrow (3/14/2012). This is just as frustrating for me as it is for you and I apologize for the amount of time it’s taken for these orders and the mix up that caused such a time gap. Feel free to email me with concerns, but I ask that we be respectful to each other in our interactions. I will not respond to inappropriate emails.
“I was laying in bed one night and I thought ‘I’ll just quit— to hell with it.’ And another little voice inside me said ‘Don’t quit— save that tiny little ember of spark.’ And never give them that spark because as long as you have that spark, you can start the greatest fire again.”—Charles Bukowski
Being Chronically Ill and Believing in the Bucket List
I had one of those rare go go go all day long amazing days a few weekends ago. It was the kind of day I hadn’t seen since high school. Though having a good day generally requires me to be hopped up on pain medication to accomplish anything outside of my bed, I spent four hours shopping (WITHOUT A WHEELCHAIR), went for lunch on campus, and spent a few hours photographing an old historic cemetery in the cold.
This is a huge accomplishment for me. Being behind the lens is has become a less and less frequent occurrence since becoming so sick. Any time I get to spend nurturing that creative part of myself is treasured.
So this got me thinking and ask you on Facebook, what do you do on good days?
Good days are to be treasured and used wisely. For those of us with incurable illnesses, these good days often give us that little bit of strength and hope to push through the next however many months or weeks of bad days. I will never spend a good day in bed. Instead, I’ve decided to create a bucket list.
Why believe in the bucket list?
Pick something off the list when you’re having a good day and do it. Include things you want to do when you “get healthy,” even if that’s an impossibility. Likewise, add little things here and there that you can do on an ‘okay’ day to your list as well. Don’t forget about your bigger dreams and goals regardless of how impractical they might be. I’ve been forgetting about those dreams and goals lately. This is a reminder for myself and for anyone else reading this; especially the sick, but the healthy too.
So here is my bucket list. Care to share some of your ideas in the comment box with others? I’d love to hear yours!
*Side note: this is also a great activity when you’re feeling down and need something to do: add to your list!
For whatever reason, a post office worker gave me stamps that did not equal the correct amount of postage needed to send all of your bracelet packages despite me bringing them to the office and asking for correct stamps! The packages were returned to my complex so I do have them in my hands and once again, they will be sent by Wednesday of next week, period. And I will be using a different post office to avoid another mixup.
I apologize for the screw up. I know you’ve all been waiting weeks for them and I promise you— you will get them!
Rheumatoid Arthritis Breakthrough Press Association— the latest breakthrough in RA research! A new drug that stops destructive cells from migrating to the joints by “blindfolding” white blood cells could be the next new way of treating rheumatoid arthritis. Though the drug is in its early stages, the next step is clinical trials! One step closer!
Few Rheumatoid Arthritis Clinical Trials Compare Results— an article discussing the findings from a recent study that found no comparison among RA/D clinical trials., the problem being that participants may suffer and physicians will lack evidence to determine whether or not one treatment works better than another.
Nick Cannon Announces He Has a “Lupus-Like Condition” But What Does “Lupus-Like” Mean? A post written by Christine over at butyoudontlooksick.com that asks the question of why celebrities do not just come right out and say “yes, I have Lupus.” For those of you that have a definitive Lupus diagnosis, it is black and white, but for many of us that are seronegative or “complicated,” we are told that a “lupus-like” syndrome is a possibility but not definite. What are your thoughts?
Blog of the Week: Still’s Life— One of the first blogs I found when my rheumatologist told me I likely had Still’s Disease, the blog details this lovely lady’s personal story while sharing great information specific to Still’s Disease, much like Chronic Curve does. Her most recent flare landed her in the hospital and in lots of pain, so take a moment and send some positive thoughts, prayers, whatever have you her way.
Do you have a blog you think should make it to Chronic Curve’s Blog of the Week? Feel free to email me a link if so!
Fighting the Fog From Pain With Narcotic Medication? New Study Reveals What We Already Know
I went out last night. I went out like a normal person at a late hour and hung out at a bar with friends. I laughed and enjoyed myself and met some interesting new people. And by 4 in the morning, I was regretting the entire night. The regret has carried over into today, and with the added pain from rain I ended up having a moment. Who am I kidding? I was having a full fledged pity party for about an hour. I hate them. I hate pity and I hate when my depression creeps up and strikes, but as usual, I got through it and am back to my normal self now. But while teary eyed and browsing facebook, resenting friends who are spending the break at the beach with beer in their hands like typical 21 year olds, I stumbled across a Facebook post by What the Jules (who if you don’t already follow on Facebook and on Tumblr by now I don’t know what you’ve been doing with your life). This lovely lady postedthis link about fatigue, Fibromyalgia, cognitive function and the connection between your pain killers and your brain fog.
The consensus? A German researcher initially hypothesized that Fibromyalgia patient participants who took opiates would suffer more cognitive impairment than those who were not on opioid-type medications.
But the hypothesis was wrong.
This researcher confirmed much of what we patients already know, but struggle to convince others and- if we’re being honest- ourselves: patients who took their pain medication hadbetter cognitive function than those who suffered through the pain. Why? Because pain is more detrimental to our cognitive function than the “loopy-ness” of our pain medication.
"Pain is an attention-demanding condition; one may suppose that *central nociceptive activity detracts from cognition by requiring enhanced neural processing resources."
I needed to read this and it came up at the perfect time: I had been fighting taking a pain killer all morning and beating myself up for relying on so much medication. How many of you know that guilt? That feeling of not wanting to be drugged, that nagging doubt in the back of your mind that others have planted in your brain through judgment and doubt: do I really need this? Does my pain really warrant this pill? If I could just go one more day without narcotics…
So stop fighting yourself. Whether your brain fog is from Fibromyalgia alone, or from multiple sources like myself, stop forcing your body to suffer through acute pain and give yourself some relief. Let go of the guilt and allow yourself to feel some relief. Remember that so long as you are responsible with your medication and keep an open line of communication with your doctor, you are going to be okay. If this study isn’t a reason to make you feel less uncomfortable and insecure about having to rely on narcotic medication (however often), I don’t know what is.
The next time you are on the opposite end of the stigma of pain killer use or a victim of pain killer paranoia, pull this little article out of your back pocket and hold onto what you know: Fibromyalgia is real. Pain is very real. Cognitive dysfunction is very real. Your strength is very real. Ultimately, the nagging guilt and rude remarks do not matter— your quality of life does.
A new treatment for Rheumatoid Arthritis/Autoimmune Disease might just be right around the corner. This new drug works differently that Anti-TNF and other biologic medication— it is able to halt destructive white blood cells from migrating to inflamed tissues/joints and thus prevents further damage altogether.
How is this different from the biologic medications out there already? Those medications work by “blocking the signnals in the body which activate the immune system to attack.” This drug will prevent the destructive white blood cells from entering joints in the first place.
The next step is preparing the drug for clinical trials. One step closer, another reason to be hopeful! I’ll be including more information about this in Friday’s Weekly Link Roundup, so stay tuned.
Keep in mind that every doctor works differently and each person presents their disease differently.
Arrive early and assess the waiting room. If you have a hard time sitting up for the duration of your wait or you find the chairs to be causing you discomfort and pain, kindly ask the office staff if there is any alternative or a room available for you to lay down in.
Try to find the new patient paperwork online. Lots of practices will have websites with printable forms. This will save you time in the waiting room and hopefully get you in and out faster. Also helps if you have a difficult time with painful hands and writing pages of paperwork at a time! You can also call the doctor’s office and ask them to fax or mail you the forms.
Bring all necessary insurance information and your insurance card
Make a Health Information Sheet— write a list of all your symptoms and considering including date/period of onset and note which ones are the most severe and how they have changed over time (try to keep these notes short), current medications/vitamins/supplements with the actual dosages and how often you take them, current medical history: any diagnoses/diseases/conditions and treatment for them, current physicians with contact information, family history, your personal contact information and your emergency contact’s information. Also list any current or past treatments for anything rheumatology-related. Make three or four copies of this sheet and allow your doctor to have one for your chart. This makes
taking your history significantly easier for the nurses/physicians in the office. I also suggest giving one to your emergency contact person and carrying one with you at all times in your wallet in case of emergency. Keep it updated as your health changes.
Consider your symptoms in detail and be honest about them. Be prepared for questions about when your symptoms started, how they have changed over time, what makes them worse and what makes them better, if they are exacerbated by physical activity, etc. Do you have fevers? When do they spike? When do they break? Do they come with chills/sweats? Be honest when discussing symptoms, no matter how embarrassing or uncomfortable it may be to discuss things like your sexual history or bowel movements. If it weren’t important, your doctor wouldn’t ask!
Make a mental (or literal) note of how your symptoms impact your daily life and what tasks seem to be most difficult. This is a common question on symptom forms and from the doctor too.
Put together a list of concerns/questions and make sure you ask all of them, and continue to ask questions as your rheumatologist goes along. Don’t hold back your questions even if asking so many questions makes you feel insecure— it’s crucial to your health that you completely understand what is discussed in the appointment and you leave feeling like you have a clear idea of what’s going on. Make sure you leave understanding the doctor’s general consensus and plan of action— what is the next step? Treatment plan, if any? Lab results, if any? What is the diagnosis or
suspected diagnosis, if any? Make sure you leave feeling informed.
Bring any relevant medical records from other doctors and make a copy for yourself to keep as well.
Bring a notebook and take notes! If you feel comfortable with someone else being with you throughout the appointment, have someone with you to take notes or jot down important info as you meet/talk with the physician. The appointments can be overwhelming, of course, and sometimes it’s hard to remember everything when you’re not feeling well, in pain, and overwhelmed. Having someone to write down important information, or doing so yourself, is a huge help.
Prepare for a long appointment. The first consult is generally a lengthy one, so dress in comfortable clothing and prepare to put aside a few hours of your day. Bring something to keep you busy in the waiting room. Chances are, you will spend a decent amount of time with this new doctor going over your entire medical history. You may also be asked to have labs drawn or x-rays done right there on site, so prepare accordingly and find out if you need to be fasting before your labs are done. Consider driving/transportation arrangements if you know that you will be unable to drive yourself after a long day. Bring a small snack and a bottle of water.
Expect to be poked and prodded. If you’re being examined for joint involvement, the doctor will more than likely examine you and lightly press on/move various parts of your body. Your doctor will likely use a stethoscope and listen to your heart/lungs and bowels. They may or may not palpate your abdomen. Anticipate being asked to wear a gown and consider appropriate clothing in case you do have to change into a gown.
Avoid wearing nail polish or covering up rashes with make up. Rheumatologists look at the skin and nails. Make up and nail polish can conceal significant physical findings that make a difference when seeking a diagnosis.
Always ask for a copy of any blood/lab results after they come in and if no one calls you with the results after a week, call them. Doctors mix up labs all the time— having a copy is key, really.
Finding a rheumatologist is a lot like dating. They might be super smart and well educated, but a poor communicator. They might be super nice, but not the greatest at looking at the whole picture. If you don’t feel comfortable with the doctor after your visit, if you feel disrespected or are not taken seriously, don’t be afraid to find another one. Your health is yours to take care of; don’t be afraid to doctor shop until you’re confident that you’re in the best possible hands. Some tips on Finding Doctor Right here.
Best the best patient you can be. What does that mean? Find the balance between being an advocate for yourself (asking questions, voicing concerns) while still remaining respectful and courteous to your doctor(s) and office staff.
Rheumatologist update, adderall, more questions, more doctors, no concrete answers, and new medications
And a question for my followers at the end, so please check it out and leave your feedback!
Saw my rheumatologist here at home on Monday. Dr. S and I discussed the findings from my visit at the Mayo Clinic. Obviously this is something autoimmune and it is important that it’s treated as such so I am going ahead with her plan and will not be returning to the Mayo Clinic’s rheumatology department. We discussed all of the new symptoms (the rashes, thebald spots) and this downward spiral since surgery in September, but all of the questions that have hung over us since I got sick still remain unanswered. As for the Fibromyalgia diagnosis, Dr. S agrees it is definitely there. Unfortunately, there’s no real way to tell how much my pain is from the FMS vs. the Rheumatoid Arthritis/Still’s Disease since the inflammation is so out of control at the moment.
There is still a big question mark with Still’s Disease, too. I have the symptoms that fit Still’s Disease, yet the blood markers that indicate Stills— a high white blood cell count and ferratin level— remain unremarkable. Regardless of whether or not I have Still’s Disease specifically , it’s generally treated the same way (Anti-TNF).
Dr. S and I decided Remicade would be the best next step. There’s only one problem (because there is always a complication when it comes to my health care…)—I can’t get the infusions up in Tallahassee (where I go to school) unless I have a rheumatologist up there as well. If you’ve been reading this blog for a while, you’re likely familiar with my struggle to find a local rheumatologist, which is why I sought out a physician at Mayo Clinic. So in the mean time, it means I have to drive seven hours three times over the next six weeks to have an infusion (loading dose for infusions are not initially six weeks apart), and eventually it will require this long trip just once every six weeks. Keep in mind I’m no longer able to drive more than two hours at a time, so I do not actually have any idea as to how I’m going to make this work. Ultimately though, it has to work. There is no other option.
In addition to Remicade being added to my medication list, I’ll be trying out Voltaren Gel to hopefully ease some of the pain I have been experiencing in my left hand, which has become less and less useful in recent weeks. As my doctor put it, using Voltaren Gel is like “smearing liquid Aleve onto your painful joints.” There is, however, a shortage of this medication so I am hoping that I won’t be unable to get it. I’ll find out tomorrow when I pick up the prescription. For more information on the shortage, go here.
I am fortunate to have physicians willing to spend time discussing school, pre-med, medical school, and look at how my disease affects each individual aspect of my life. Dr. S and I discussed me dropping my major and essentially forfeiting my lifelong dream of medical school due to the brain fog, which has become extremely severe since starting classes again.
We had discussed Adderall to help me focus in the past, but put it off because it wasn’t truly necessary when I was just home taking time off. But now, I am failing classes and failing them fast and need to do something to change this. Tutoring only does so much good when the actual problem is not being able to focus, memorize, or think analytically. So, a low dose of adderall should be helpful. The problem? Florida drug laws. I’ve written before about painkiller paranoia and the stigma of narcotic use; this same stigma rings true for those of us that use Adderall. Notoriously, this medication is abused by college students for obvious reasons. Florida makes it so that it’s a red flag when adderall is prescribed by physicians other than psychiatrists. So, Dr. S will be writing me a letter to take to a psychiatrist. I can only hope that the psychiatrist will understand the physiological cause of the brain fog and prescribe me the medication rather than diagnose me with something like ADD or give me a difficult time— something I’ve encountered with psychiatrists in the past. It’s frustrating, these Florida-specific laws. I have to seek out yet another physician that is completely unfamiliar with chronic illness and autoimmune conditions to prescribe me a medication for an autoimmune condition, while having to pay again another high copay and insurance fee when I really should be able to get the prescription from a physician I am already seeing that is familiar with how the medication is used! These laws, while necessary, are costly and time consuming for patients, and ultimately leave us subject to unacceptable discrimination and judgment from legislators, doctors, and pharmacists. On top of the fact that this prescription is apparently difficult to obtain in Florida, there is a serious shortage of Adderall in the United States at the moment, though hopefully this won’t prove to be a problem (fingers crossed).
So this is where I stand for the time being. I feel a little lost with treatments and my health at the moment, so hopefully a new biologic will get the ball rolling in the right direction again.
How many of you use medication to help you combat the brain fog, cognitive dysfunction, and fatigue? What medication do you use? What coping skills do you use? I’d love any input, suggestions, and I’m sure there are others that would too soshare in the disqus box below!
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How Rheumatoid Arthritis Affects the Lungs— a comprehensive look at the way RA/D can cause pleurisy, nodules, pulmonary fibrosis, and interstitial lung disease. Great article and the quote physician notes the discrepancy between the disease’s name and the actual disease course!
Lupus & Rheumatoid Arthritis Affect Birth Rates— A new study finds that women with autoimmune diseases frequently have fewer children than desired, while examining how infertility and other factors influenced the finding. RA was found to be associated with higher infertility.
Rheumatoid Cachexia— Ever heard of it? How many of you experience muscle-related symptoms but are told muscles are not affected by the disease? This might be of interest for some of you. "Rheumatoid cachexia, loss of muscle mass and strength [..] is very common in patients with rheumatoid arthritis (RA). Despite great advances in the treatment of RA, it appears that rheumatoid cachexia persists even after joint inflammation improves. In this issue[…] demonstrate a link between rheumatoid cachexia and metabolic syndrome, further reinforcing the need for therapy directed beyond inflammation and at the metabolic consequences of RA”
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It was one of the most incredible messages I have ever received and I am truly without words to appropriately describe how happy I am that someone found the spark they needed to keep going here on Chronic Curve!
I received an email from this lovely lady anon who ended up making a Love Yourself More collage! And she has so kindly let me share her creation with you:
How beautiful is this!?! It is currently my desktop background and I just love this so much. I may even make one of my own, what about you? Let’s show this wonderful woman some solidarity, support, and reblog her collage and what her personal strength represents: hope for each and every one of us.