Beginning Our 4th Year! 5 Stunning Things I Learned & My Forecast for the Future
Three years ago today, I typed my first blog post in my back yard on a whim. My daughter had started to blog – what’s to worry about – just do it! Before that, I’d been working on ideas for months. I did have a goal: to build a website where RA patients could find reliable information and have a safe environment to ask questions and support each other. Pretty simple stuff, right?
My bad
- While I did dream of building a comprehensive website for RA, I had no idea the impact it could make.
- Or how much hard work would be involved.
- At first, I thought that I was mostly alone; I supposed that most people with RA fit textbook examples, responded well to treatments, and usually received appropriate medical care.
The biggest thing I learned was that I was not alone. It took a year to convince me it was safe enough to write my swelling confession. Since then, I’ve realized a majority of patients do not fit the “typical” RA in books. Tens of thousands of comments tell the story.
Here are 5 stunning things I discovered
1) There is a great divide in rheumatology understanding with regard to various symptoms, especially conspicuous swelling. Too many doctors are not aware of current research or treatment recommendations. There is a stark contrast between the levels of quality of rheumatology care patients receive. A standard of care is needed.
2) Most descriptions of “typical” RA presentation are inaccurate and inadequate.
3) Academic credence is given, by some, to a belief that the severity of RA pain is exaggerated. Medieval theories about women and anger are reincarnated, impeding progress, and using modern words such as hypochondriasis.
4) Highly specialized research is revealing what Rheumatoid disease often entails (such as lung involvement). However, people who live with RA are the only ones with full comprehension of its symptoms. The patient voice is urgently needed and perilously absent in the educational, legislative, research, and industry arenas.
5) Most people who live with RA are the bravest, most optimistic people in the world. People who care for them are a close second.
I’d like to meet & thank every one of the millions of visitors to the site.
Who knew I’d make friends like the phenomenal Kevin Purcell, rockstar mentor Dave deBronkart, Mayo Clinic’s extraordinary John Davis, the fearless yet gracious Donna Cryer, and meet sisters like Barbara, Nancy, Dana, Shannon, Karaleigh, Jamie, Jenny, Carol, Kim, Vi, Steph, Connie and brothers like Trey, David, Randy, Bob, Jay, Jason, and so many more… and my Twitter #rheum-mates, my Facebook family and MD’s who seek patients’ best interests, especially Lothar Kirsch and Shashank Akerkar, Carlos Caballero, Paul Sufka, and Ronan Kavanagh!
While we have 15,000 fans on Facebook, 40,000 views on YouTube, over 18,000 comments, almost 1500 completed our 1st survey… numbers can’t really tell the story. PATIENTS tell the story in their comments, blog posts, and letters searching for needed help and support and sharing it with others.
This winter, I received the WebMD Health Hero of the year award for working with patients. This week, I was chosen by Sharecare as the top online influencer in the world of Rheumatoid Arthritis for working with patients. Last month, I finally created a Press tab to collect all that info that I’d lost track of.
Forecasting the future for Rheumatoid patients
I used to make lists, but I mostly gave that up because with RA, it became too discouraging. Even so, it haunts me the dozens of posts partially written and the dozens of projects not yet completed. But when I pry myself away from that, I look forward – and I see a different future.
From my unique vantage point, I see a future in which…
- Doctors are aware enough of Rheumatoid disease that people are promptly diagnosed
- Disease treatment options are applied or adjusted without delay
- Symptoms are treated instead of dismissed, doubted, or debated
- Research dollars reflect the severity of the disease and the millions affected
- Patients are not told by loved ones to forgo treatment for cherry juice, raisins, or jogging
- RA awareness brings appropriate accommodations / assistance when patients CAN’T do things
“I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I —
I took the one less travelled by,
And that has made all the difference.”
From The Road Not Taken (1916) by Robert Frost
Related posts
- List of posts about Patient Reported Outcome Measures
- Blog’s 1st birthday: History of Rheumatoid Arthritis Warrior Blog
- Blog’s 2nd birthday: Elephant Jokes for a Happy Two Year Birthday RA Warrior
- I’m Not All Better, Just Too Polite to Whine; Yet Victory Is Still Sweet
- My actual birthday: My Birthday Cards to Make You Smile
I love that someone is further advocating for this disease and the many thousands of us! I’m a recent diagnosis of this horrible disease and at present am in remission or it’s dormant. I know that can change at any moment…so I try not to take my life, as I know it, for granted!
Thank you. 🙂
happy 4th anniversary RAW! may you continue to be the voice of millions of #rheum patients out there…thank you for the encouragement & a place to “belong”.
God bless! 🙂
Good Morning BIRTHDAY GIRL > rawarrior KELLY!! GOT TO SPEND TIME W YOU BEFORE I GET TO WORK, WONDERFUL as always THANK YOU! #RHEUM #RA
To sum it all up: Kelly, you rock! 🙂 Whenever I feel down, frustrated, alone, happy, optimistic… you name it, I can come and read your blog and I ALWAYS find something that hits home with me and makes me feel better about fighting this disease. Sincere thanks hardly seem adequate!
Thank you for taking such great strides in advocating for yourself and others, for giving those lost newly diagnosed someplace to find information and not feel alone, for listening through all the posts and various mediums that you use, and finally thanks to RAW for inspiring us to do the same in our own lives.
rawarrior wow how time has flown.
Happy anniversary, and congratulations on a totally terrific website.
I’m new to all of this, diagnosed a couple of weeks ago with unspecified inflammatory polyarthritis. All labs negative, swelling minimal (my doctor saw a lot more than I do), and all the unmeasurables- pain, stiffness, loss of ROM- present, along with bone loss on x-rays. How not one but TWO orthopedic surgeon/hand specialists missed it . . .
I realize that I was lucky to find a rheumatologist on the first try who takes me seriously and started treatment right away. At the first visit she asked me to go online and read up on methotrexate before starting it the next week. Your seven-part series was just what I needed. It didn’t minimize or exaggerate he risks or the benefits but just laid it all out. I love the way you link one article to others with similar content. The lack of dogma or a party line is refreshing, as is the professionalism with which you approach this nasty subject.
Brava, and here’s to many more years.
This blog is a source of comfort that I turn to when life with RAD gets me down. It’s amazing how much we’ve learned already by sharing our experiences with each other. It’d be praiseworthy enough as pure support; your dogged determination to understand the disease process has led to a phenomenally impressive contribution to the evolving medical science as you continue to fight for the patient’s perspective.
I simply can’t say enough good things about you or this site!
Congratulations on all you’ve accomplished! It’s been wonderful to take this journey with you and I look forward to the future!
You have been very courageous in taking on this task. I wish I could the same for my illness. It is quite shocking how much even the people who are caring for us are unaware of what works and what advice to give. The patient is usually the best specialist and can provide a lot of information about their condition. I have had negative comments or unhelpful advice on several occasions and sometimes it leaves you questioning the people who are trying to give you the care. congratulations for making this big headway towards realising something very tangible results out of your blog.
I’m not sure this is the spot to ask this question, but I am going to anyway. How do you know when it’s time to give up and get help? I’ve had to get my husband to hang up clothes. If you’ve never had hurt shoulders, you can’t imagine the pain of trying to get them on those flimsy things, and then to lift them up to the clothes pole!! But my biggest concern right now is my knees and feet. I feel like I am balancing fat thighs on top of sticks. Like the pirate with the wooden leg. Sometimes I can’t walk from my bedroom to the kitchen without crying and stopping to sit. What gives? How do I make the decision to use something artificial. I don’t even know what to get. I know Kelly will use a wheelchair. But I can’t. No room in the house. No real caregiver. I am the caregiver in the family. Everyone works. I work. From home. My husband and I have a small business. I do the bookkeeping. I know most of you have even worse problems than mine. I don’t mean to whine. I am thankful for what I can do. So, how do you know? My doctor doesn’t talk about what I can and can’t do. Check swelling and blood work, that’s it. I feel very alone right now. I couldn’t think of anyone to talk to but y’all. Can any of you help?
Hi Anna, I hope you’ll get some more replies, but I’ll also post this link in case you haven’t read the discussion here on the comments page (58 comments on this topic) https://www.rawarrior.com/when-should-people-living-with-rheumatoid-disease-use-a-wheelchair/ . I’ve only used a wheelchair in large places like airports, but it has its own problems. The chairs are usually uncomfortable and I end up w/very stiff hurting hips, knees in a short time. I know a lot of people use electric carts in large stores. Anyway, I think there are several items that in between using nothing and being in a chair. There are assistive devices to help you reach (if they don’t hurt your hands & shoulders even more – only you can know) and several types of canes or rolling walkers you could use to steady yourself when needed. Also, I’m wondering whether there is something medically that can be done to help your knees. What does your dr say when you tell him how hard it is? I know just what you mean about appointments – that’s how it often is – just blood work & prescriptions is all there is time for. I’ve never been asked about what I can’t do or been given a questionaire that we read & write about for measuring disease activity. I know it’s hard, but you probably need to bring it up. If the dr wont address your questions, you may need to find one who will. I’m sorry it’s so hard.
This is a reply for Anna. I am so sorry for your situation. Having RA is bad enough but then to be the family caregiver on top of that is too much. I too am a caretaker for my disabled dau who is autistic and in a wheelchair. First, I would suggest sitting your family down and explaining to them exacting what RA is. They may have a misconception about the disease (many do). Solicit their help and assistance. You might be surprised by their desire to help you more. Also, if you can take one of them with you to your next drs appt they may learn more about RA and see how it is effecting you. That brings me to Drs. if you don’t already have a good Rhuematogolist-please try to find one. A good one can make your life so much more bearable. It may help to explain the details to your dr about what your life is like and get him to help you towards being able to function better. I find that I have to push and be my own avocate with RA. The right meds can make all the difference in the world. I am on my 4th biological med and it has helped tremendousiy. Find a Rhummy who is open to trying different meds until you find one that helps. I wish I could say this is all easy but it it is not. I believe there is help for you out there. Keep a good attitude. A sense of humor has helped me when I thought I was falling apart.
Hi Anna! RA is such a task master. It tells us what we will or will not do each day. I was a fiercely independent person. I fought using assistive devices for a long time and all i did was cause my joints more damage. Almost 4 years ago my feet and ankles got to the point where they just would not hold me anymore. I fought using a wheel chair for a long time. My hands, wrists, elbows, and shoulders will not take the strain of a cane, crutch, or walker. I had to finally face the fact that I either started using a wheel chair, stay in bed full time, or sit in my recliner the rest of my life. I chose the wheel chair and discovered a whole new world! I could go out to eat with my family and not come home feeling like I had been through a war. I could spend time with my young daughter outside and watch her play again. I am not saying it is always easy. I had to get used to being stared at by people who just don’t understand. It can be difficult to load or unload my chair as it is a power chair and weights 235 pounds. However, it is all worth it for my quality of life. Anymore it is the only way I can do anything. I also have a reacher as Kelly suggested which has my joints a lot of pain and suffering. I finally get it that all those devices are out there to help me, not make me weaker or look weird. I really don’t care anymore what people think, I need the devices I use just like I need my medications to treat my RA.
By the way, you are not giving up when you ask for help. Most of our loved ones are only waiting to be of help to us and do not know how to ask us if we need help. Many times it is a great relief to our loved ones because they can now be involved with our journey. RA is a family disease and they feel left out many times as we struggle to be as independent as possible and shun offers of help. So ask for that help. Let your husband feel a part of your life and the journey you are on with RA.
Anna, it sounds like your Rhematologist is not listening to you – hopefully you’re voicing the same complaints to him. As you’ve probably seen on this site, some are definitely better than others. Sometimes it’s as easy as finding the right medication, but that is hard too – I’ve been on methotrexate, humira, tried Cimzia getting ready to try Orencia. But my hope is some kind of relief. I believe there is something out there that will help. I’ve had steroid shots in my shoulders and that helped tremendously – after a time. And if you have to stop and sit, you have to stop and sit. Don’t give up!
Hi Anna, I am sorry you are having such a hard time right now. It sounds like you have already decided that you need to try some assistive device(s) or you need more help from your rheumy with disease/symptom control. At home, I don’t have room for a wheelchair either, but I use a cane, it helps me feel more “balanced” when my knees and feet are really bad and I had taken a few falls in the house before I started using the cane. My rheumy put me on my Lorcet every 4 hours about 9 months ago (rather than 3 times a day which is the way I had taken it for over 4 years) and this has really helped to keep my pain at an acceptable level instead of the highs and lows on the “pain scale” I was dealing with for so long. Try talking to your rheumy next time you see him, if he is not willing to do more to help you, I might start to look around for another one. Or if you have a good Internal Medicine MD, sometimes they are very helpful where the rheumies leave off, especially on symptom treatment. I wish you the best, I hope things start to get better for you, but in the mean time, this is a very good and safe place to be, and you could not be in better company!
Anna, It is such a hard thing to lose your mobility after being the caretaker. As much as it hurts physically, it also does a real job on your mind. I do know this for a fact and so do many others on this site. You may want to make your own simple chart on a scale of 1 though 10 on the pain level in each joint for like a week or so and take it to your next appointment. Maybe even ask for cortisone shots in the shoulders. I hate the shots but I do get them and it is like a mini miracle for some pain relief. I also have every kind of ace bandage for wrists, ankles, elbows, knees which help a bit. I take an ultra light cane with me places even though I can’t really lean on it, but it does help others around me to know I will be moving slow. I have used the electric carts in stores when totally necessary and I do own a wheel chair that I will bring with to the zoo and my husband and I take turns pushing each other. Every day is a new adventure with this disease and it’s like you have to deal with it as it hits you. It is so important you find a good RA doc to help you with your pain and help you get moving. I am so sorry. We are all here for you to talk with. Hang in there…
Anna…I do not have a lot of advice to offer in addition to what has already been said. i just wanted to wish you
((((gentle hugs)))) and hope you try to take care of yourself through this journey.
Kelly you’ve hit the nail on the head! Keep going, you’re making a difference!!
ooh, didn’t mean to seam insensitive to your current pain – just read to quickly … feel better – and thank you for al that you do – you are making a difference!
I do not see you as insensitive! My pain is pretty constant & I’m used to no one commenting on it – that’s fine. I just took this opportunity to reflect back and forward. Sometimes, I stay so buried in whatever is current – the piles of emails, headlines, and deadlines… that stopping to reflect is a good thing.
No wonder my grandmother and my own mom for that matter were never diagnosed with RA despite the crippled hands, the fatigue that I remember with my own mother (she’d blame it on narcolepsy…which is an autoimmune disease in itself) and grandma also had autoimmune hemolytic anemia. No blood work was ever done to test for RA mom was given valium for her “nerves”. I look back and just by the physical symptoms I just knew it had to be RA. Women back the were so much more stoic that they are now….not stronger just stoic. That in itself makes me cry inside for them that they suffered in silence, alone.
I’m sorry Leslie. I wonder if the incidence of RA is really increasing or we are just diagnosing it more readily. No way to be sure. Many still take years to be diagnosed.
Congrats Kelly on the success of the fantastic website and blog, especially with all the hard work that you do in spite of the constant pain that we live with each day.
Thank all of you for the kind words and advice. I will try some of those things and see what happens. Thank all of you for being here to reach out to. Thank you Kelly for making this possible. Gentle hugs to all of you.
From the bottom of my heart I thank you, Kelly, for helping me to stay as sane as possible. I look forward to your posts and am always impressed with your ability to take time to write knowing how much is on your plate. I have a question and you may or may not feel okay about answering it, but I had an AWFUL experience with Mayo (Jacksonville) and would really like to share the story with someone (preferably at Mayo), but who would that be? Is there a patient services quality control dept? I probably am thought of as the problem patient now so I may not have much credibility. I would feel remiss is this situation happens to other patients and we accept is as the norm. Thank you again for all that you do. Take care, Lynn
Anna, I am a caregiver, too. My rheumy absolutely doesn’t ask any questions about mobility, either. My rheumy is basically an mtx dispenser. My ortho (and physical therapist) does more for me and mobility issues than him by a long shot. Physical therapy is a turtle, slow, but sure. Just one thing: in my experience, you will need to educate your therapist a bit. For example, the bands she has me pull are these skinny things and it kills my fingers. On really bad days, I will not use them at all, and just tell her I can’t. On good days, she’s now trained to get me wash clothes to put inside the part where you hold the bands, so that there is more to it, and my fingers don’t have to take the brunt of the force of pulling. Another one I have to do depends on how bad my elbows are that day. The therapists who work with me are very understanding, though, and don’t push me when I say, “I can’t do that one today.”
But I couldn’t do PT if I were in a constant flare, so the disease process has to be slowed down. That’s where your doc comes in. He’s got to get you on the right meds to get that under control if possible (I am very lucky, and that’s been an easy task for my dr, but I know most are not like that). But I’m totally swearing by PT -while I can do it-. Maybe talk to your doc about that, and if he just wants to blow it off, maybe see an ortho.
It really sucks when someone else needs care and I just feel like screaming “I HAVE A LOT OF PAIN, TOO!” Anyway, you’re not alone. Hope you are able to get some relief soon.
Trill,
Just to refer to your comment, to make an important point: “But I couldn’t do PT if I were in a constant flare, so the disease process has to be slowed down.”
I think that any of these discussions are really difficult when there are a some patients who are in constant flare and at least 34% who are unresponsive to treatment. In spite of that, the comparing by the doctors or family members who don’t recognize that or don’t take it into account, is meaningless and unfair to those patients, who usually have a very hard time getting help because of the mis-understanding.
Oh, P.S. I’m looking for a walker for my mom now that might help you. I haven’t found the brand or which one I’m getting for her yet, but it’s basically a walker which allows you to be able to stop and sit down. I guess there is a seat behind you. I keep hearing about them, but haven’t done any research yet. I think it is something like this: http://www.walgreens.com/store/c/hugo-rolling-walker-w/-padded-seat/ID=prod6000812-product
But her occupational therapist is supposed to bring a couple walkers by soon so she can try them out, and I’ll post here about what we end up doing. We have a pretty small house, too, so….not sure.
You are a phenomenal woman, Kelly! Thank you for all you do.
This message is for Trill. Thank you from the bottom of my heart. Your concern and care brought tears to my eyes. Good luck to you and your family.
I found this site due to a friend’s Facebook post. I didn’t read all of the posts, just some. Wonderful work you’re doing here. I’m not sure how you reach the general pop. with awareness. I suspect the name is somewhat misleading (the arthritis bit) and people just lump it mentally in with osteoarthritis which isn’t even close. I first learned of RA and the resulting effects from a friend at work. Her MIL had it and she spoke of the issues of not only being in bed for long periods of time and the results of inactivity but the problems with her heart. I’m grateful to her although she moved across the country and I haven’t seen her in over a decade. I’m grateful because when my own Mom started exhibiting symptoms, I told her what I thought it was. She ignored me. It was a long time before she was willing to go to her doctor about it. She thought it was part of aging (she was in her mid-60s). She came to visit and we went to look at assisted living facilities. There were days she couldn’t get out of bed, brush her teeth or hair, and days she thought she was going to die. She started giving sentimental things away. Finally, when I told her I was pregnant, she went to the doctor…who dx’d her with RA. Unfortunately, if she had sought treatment earlier, she might have been on an oral med, instead she went on Remicade immediately. Fortunately, it worked…for a while. She has since tried a few others that didn’t work and for now is on Rituxin. She doesn’t use the Internet so pretty much the info she gets is from her dr. or from us. I’m so grateful she finally sought treatment and that for now it’s working so my children have a chance to develop a relationship with her.
Thank you for sharing your mom’s story, Debi. There is so much misinformation about this disease and a lack of awareness that has never been addressed. A little over a year ago, we created a Rheumatoid Patient Foundation to address some of these issues and promote education about RA and research as well.
Please give your mom my best wishes. I’ve been on Rituxan the past 8 months too. Good luck to her.
this website has been so helpful. Thank you for all that you do. My mother was diagnosed over a decade ago. Back in the beginning no one wanted to listen. Here I am at 32 going through the labs and specialists to get a magical diagnosis. Thankfully with the family history Drs actually listen to me even though I am RF negative. Still not diagnosed, but my dr has started me on mobic until everything comes back.
This is an awesome site, I hoped I wasn’t the only one out there that has had issues even getting diagnosed! I’m 28 and was diagnosed this past February. It got to the point I couldn’t even lift my arms up or get out of bed and my toes are already starting to twist, I just wanted to crawl under a rock and die, figured it would be easier. So I had my first RA doc tell me I had a low pain tollerance and to take advil (as she squeezed my hands and feet)Ouch! Got a second oppinion and was told that I have 36 inflamed joints, and now my tendons are starting to get inflamed, I have to go for regular chest x-rays cause my lungs are struggling a bit, my one blood tests were ridiculously high at 175, yet I tested negative for RF. So many people have told me to just deal with it or that it can’t be that bad. Thank you all for posting you thoughts and experiences, feels good to know that I’m not alone, this disease sucks, it hurts like hell and if another person says “I understand” or “maybe it’s your diet” to me I think I will punch them in the face!(probably not but it would feel good!) I’m one month from starting the Biologics and was wondering if anyone has had a bad experience with them? Concerned as I am already on a whole crap load of meds!
I look forward to future posts and comments!
Dealing, but frustrated with ignorant people!
Welcome, Lonney. Yes, what a difference between 1st & 2nd opinions & yes, such ignorance about this disease…
We respond differently to the meds – and there’s no way to know beforehand – I wish there were. The only thing that I’m certain of is that the disease itself is usually aggressive enough that treatment is usually the better option. It is a nasty disease. I hope the treatment works well for you.
I have one more question, has anyone had issues with their fingers? Mine started “locking” a few months ago and got to the point where I couldn’t even make a fist in either hands. They are feeling better now but my little finger and middle finger on the other hand still “click” and “lock” when I open and close my hand. Does anyone have any advise on how to treat this?
this is pretty common, Lonney. Hopefully it will improve when you start treatment. Sometimes heat or ice can help to loosen it up. It’s probably the tendons as you mentioned above & the same thing that makes you feel your toes “starting to twist.”
You women are amazing! Such an inspiration! Thank you all for being honest and you! Makes it a bit easier living day to day knowing there are people just like me!
Kelly, the day you decided to write this blog was the day we RA supporters and all RA and JRA patients won the lottery and the sun appeared brighter on the horizon! You’re the best! Happy Anniversary!
Vi, can I be adopted into your family too? They are so lucky!!
Finally, a group that I can relate to. I’m tired of minimizing how lousy I feel much of the time…so tired literally. Thank you, Kelly!
Hello , Good Afternoon depending on where you are located. Came across your wonderful site while researching the “water issue” when taking metho. I was told to drink 10 to 16 glasses of water on “my day” in order to flush out the toxins from kidneys. Been doing that but find I think I do something to my electrolytes. Now the meds info I get when I refill prescription makes no mention of this huge amount. Pharma says everyone should drink 8 glasses per day anyway so he was no help. Wondering if there is a consensus on this topic? Reminder to self. Self ask your Dr.
Looking forward to reading your blog, going forward. Was diagnosed in 2000. Been on metho since then.