Rheumatoid Arthritis Guy is pleased to announce the launch of the RA Information Library!
In the handful of years in which I have lived with rheumatoid arthritis, some of the most useful advice and helpful information that I have received has come from others who are also living with rheumatoid arthritis. While I appreciate the wide variety of clinical information that is currently already, for me – at least – nothing is quite a useful as the experiences I have been able to share with others who also live with rheumatoid arthritis.
This RA Information Library is a community site that will allow the voices of all of us to be heard. Whether you’re looking for information, want to share some information or advice, have a question to ask, or can answer somebody’s question – this is the place to go.
Launching this RA Information Library is my humble attempt at establishing one convenient location where we can share information about rheumatoid arthritis and other related diseases. The library as easy to use – all you have to do is browse by topic.
I hope you find this RA Information Library useful! I look forward to sharing more in the future, and I can’t wait to see what others have to contribute.
The library home page displays a list of available binders. Click on a binder, and you will see the info sheets that it holds. Once you open an info sheet, you will be able to read information, questions, and answers related to that topic.
In order to add comments in the RA Information Library, you must create an account and be logged in. (No account/log in is required to read the RA Information Library, or to comment on the other parts of the blog.)
Please find the “My Account” section at the top of the far-right side column. From here, you can register for a new account, log in to an existing account, change your profile, and receive a temporary password in case you forget your current password.
Registration is easy and takes only a minute. All you need is a username and a valid email address. A temporary password will be sent to the email address you provide. Once you log in, you will be able to change your password.
Latest Updates and Subscriptions
The library home page displays a list of the ten most recently updated info sheets. You can use this to find the most recent comments that have been added to the RA Information Library.
Below each binder and info sheet is a RSS feed link, which can be used to subscribe to certain topics via your favorite RSS reader.
I’ll meet you in the RA Information Library! Please let me know if you have any questions.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Louis Armstrong was born on August 4th. Be sure to listen to “What a Wonderful World” – I don’t think this song can be listened to enough times!
Louis Daniel Armstrong (August 4, 1901 – July 6, 1971), nicknamed Satchmo or Pops, was an American jazz trumpeter and singer.
Coming to prominence in the 1920s as an innovative cornet and trumpet player, Armstrong was a foundational influence on jazz, shifting the music’s focus from collective improvisation to solo performers. With his distinctive gravelly voice, Armstrong was also an influential singer, demonstrating great dexterity as an improviser, bending the lyrics and melody of a song for expressive purposes. He was also greatly skilled at scat singing, or wordless vocalizing.
Renowned for his charismatic stage presence and deep, instantly recognizable voice almost as much as for his trumpet-playing, Armstrong’s influence extended well beyond jazz, and by the end of his career in the ’60s, he was widely regarded as a profound influence on popular music in general: critic Steve Leggett describes Armstrong as “perhaps the most important American musician of the 20th century.” Flea once proclaimed that “Louis Armstrong was probably the greatest musician that ever lived…one note implies that if he wanted to he could play ten billion notes, but just one simple note is a beautiful thing.”
Me and my operation: I was in agony – so they sawed off my ankles and gave me new ones
Hip and knee replacements are among the most commonly performed operations in Britain. Now patients are being offered ankle replacement, too. Ailsa Bosworth, 60, chief executive of the National Rheumatoid Arthritis Society, was one of the first to benefit. She talks to LUCY ELKINS.
During the past month, there was a certain thought that was frequently floating around in Rheumatoid Arthritis Guy’s head: “I hope my RA doesn’t come back, because if it does I don’t think there is anything more that I can possibly do to help, on top of what I am already doing.”
During these past few days, I am proud to say that I have proven myself wrong.
Up until a few months ago, my reaction to any recurrence of pain of stiffness was the same – try to deny its presence as long as I can. As long as the symptoms continue to remain internal and I can hide their effect from those around me, everything is going to be okay.
(If I were a Family Feud contestant trying to name one of the top five answers to the questions “What’s the best way to respond to RA pain and inflammation?” I would now have a big red “X” being shown over my face. Actually the producers of the show would probably decide that this answer was so bad that it deserved three strikes!)
I’ve since realized that denying what is going on inside my body and mind only makes things worse, and that I would probably be better if I pushed up my acceptance letter a little…sort of like early admission for college.
Well, in the past few weeks I have tried to implement this new piece of self-advice, when – BAM – I felt like I was being smacked in the face by fear. (And for those of you who read my post a couple of weeks back when I had a bad day, you know that this fear was indeed as real as it could be.)
That’s my prize for doing the right thing? I can’t be…it feels like I’m being punished when I should be rewarded. Something is obviously wrong here. Things were much easier when I tried to deny them instead of confront them head on.
So I’ve spent the past couple of weeks drilling into myself that was important was not the absence or presence of fear, but how I reacted when any such fear entered my life.
And it served me well, I think.
Let me give you the play-by-play commentary of the past few days, in my best John Madden voice. (Football anyone?)
1st Down/Friday: During the evening, I noticed that my right elbow was hurting quite a bit. I pulled up my shirtsleeve in front of the mirror, and saw a big bright red circle (not even Sharpee marker red is as red as this was…) Bummer! (Okay, that’s not exactly the word that came out of my mouth.) Well, what can I do? I put on my proprietary blend of Peaceful Mountain Joint Rescue Gel and Aspercreme. An hour later, things seem to be a little improved.
2nd Down/Saturday: I wake up in the morning, with some pain in my hands, elbows, and one ankle. Double Bummer! (One again, not exactly – you should know the routine by now…) Maybe if I get some bed rest in the morning things well get better. (Wishful thinking.) Around midday I roll out of bed and stumble into the bathtub. In the back of my head I hear the voice of my physical therapist: “Call me anytime during the weekend if you’re not feeling well, and I will meet you in the clinic.” Before I was even fully dressed, I had fifteen minutes to arrive at my impromptu physical therapy session. (Can you believe it???) Two hours later I come back home, and while my pain and inflammation were still present, they were considerably lowered.
3rd Down/Sunday: Things are looking good. Maybe all of that was just a false blip on the radar. I am so glad that I requested that extra physical therapy session on Saturday and didn’t try to tough it out through the weekend, as I would have done in the past. (And way in the past, I would have tried to tough it our for much more than just a weekend.)
4th Down/Monday: The first thing I noticed when I wake up is that my ankles are stiff. Triple Bummer! (See above.) While I’ve had some pain and inflammation during the past couple of months, it’s been much longer than that since I’ve experienced any symptoms of morning stiffness. This is not good news. I just want to lay in bed and not face the day….fast forward two hours, and I am just wrapping up a serious session of pilates. I certainly didn’t do anything that pushed my self too far, but I did manage to work past the limitations of the morning stiffness in my ankles. And in the afternoon I had my regularly scheduled session of physical therapy.
Score! (Okay, maybe it wasn’t a touchdown, but at least it was a field goal – the important thing, after all, is to get points on the board.)
So I guess my new modus operandi when pain and inflammation appears is to respond as quickly as possible. The fear is still there, I would be lying if I said that it played more role whatsoever. But I’ve tried to relegate it down to a supporting actor role…and maybe in the future it can become just an extra on the set.
There are a lot of things about living with rheumatoid arthritis that are outside of my control, but I am determined that my acceptance of and reaction to any reappearance of pain and inflammation will remain within my control. I’ve worked to hard to get where I am, and I’m not going to lose it all to fear.
So rheumatoid arthritis, beware – RA Guy has just added “rapid response” to his list of superpowers!
(Moral of the story: there is always something more that we can add to our list of superpowers.)
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Rheumatoid Arthritis Guy received an email from Mur the other day, recounting the adventures of her first solo outings with her wheelchair. I laughed so much when I read this story, that I cried! Mur was kind enough to give me permission to re-post her message here on my blog. Enjoy!
The Runaway Wheelchair
By Mur Shuker
Well friends, I almost met my maker today…and as with most of the events in my life, it would have been a hoot…and it all began because of a lost left contact…
As I was going to Lens Crafters in the Altamonte Mall to pick up my new pair of contacts (I somehow managed to lose my left contact from eyeball to eye case…go figure), I was bummed to discover that there were no handicap parking spots available. For those of you who may not be aware, I have been diagnosed with Rheumatoid Arthritis. I have difficulty walking any distance, and I was prescribed a ‘Companion Wheelchair’ (the doc didn’t want me to get a scooter…he was concerned that I would become too dependent on the new ‘wheels’…as if I relish the thought of not being able to walk on my own two feet, but, I digress…).
Anyhoo, I found a spot a bit of a ways from the front door of the mall. Knowing that I wouldn’t be able to walk the distance I decided to pull out the wheelchair and ‘wheel’ myself in. The boys are off at camp, so no ‘companion’ to wheel me. But, seriously, how difficult could it be? I am woman, hear me roar…
…ok, maybe hear me SCREAMING (in my head!). You see, it seems that where I found my parking spot… well, it was slightly uphill. Being new to this blasted disease, and all of the gadgets I use to keep on, keeping on, I am still on a learning curve…
Have you ever tried to stop a ‘runaway’ wheelchair with your bare hands? It ain’t as easy as it sounds. I probably looked like I was skiing, veering right and left (Benny Hill music would have worked perfectly here)…thankfully, there was no oncoming traffic.
After what seemed like hours, I finally hit level ground. I am sure I must have had that ‘Botox Shock Look’ on my face along with a windblown head of hair. Feeling a bit embarrassed (and exhausted) I continue to wheel myself towards the building. The Mall doors are in my sight…almost there…
Well, trying to get through the Mall door was harder than I thought! I almost did a major face plant. Seems the doors have a bit of a lip/hump on the bottom. And when you have picked up some ‘rolling speed’ and you come into a full and complete (unexpected) stop, that whole ‘physics’ thing comes into play. Thankfully, there was a kind soul who ‘skootched’ me in.
A bit embarrassed at the whole ordeal, tired and exhausted (not to mention bemoaning the loss of several layers of epidermis from my hands), I make it to my appointment on time.
Got the new contacts in, bara bing, bara boom, I am out the door…Reality doesn’t hit until I realize I have to go UPHILL in search of my parked car! Ok, if I thought coming down the ‘Mall slope’ was bad, imagine my dismay at the prospect of ‘rolling uphill!’
I kept thinking of that ‘Lil’ Engine That Could’…”I think I can, I think I frickin’ can! And I did! I was feeling pretty impressed with myself when I realized my car was not parked on this aisle! My car was on the other flippin’ side!!! There was no way in hell, I was going to ‘Mall ski’ downhill and come back up again…screw that little engine…
After a few breaths of ‘good air in, and bad air out’, I started looking for an ‘in’ through some of the parked cars. I needed to have room to get the wheelchair through and not scratch up any of the cars…when all of a sudden, I heard an engine either approaching or backing up…it was right then and there, that I realized sitting in a wheelchair in between SUV’s in a parking lot is not exactly one of the smartest things I have done. I kind of felt like Daffy Duck during ‘Duck Season’…
Thankfully, I make it to my car, wheel chair in tow and I head straight to the Mobility Scooter Store next to TooJays…Got me one of them there Scooters…to hell with what I was told. I know my body, and I know I have a life to lead. And if I have to use one of them little scooters from time to time to get through daily life, ain’t no one going to stop me! There is too much life out there to let it pass me by!!!
And btw, I got the little flag too…at the moment it is orange, however, I will be altering it to make it look like a pirate ship flag…with a pink bow…
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy and Mur!