|
|
Wednesday, March 4th, 2009
| |
4:44 pm - A shot in the dark....
|
lberghol
|
So...lately I've been freaking out because since this past fall my right knee has become less and less mobile. On really bad days, it's extremely painful to bend it beyond a 45 degree angle. I was diagnosed with JRA when I was 3, and it's been in almost all of my joints for the past 27 years. The thing is I'm not entirely sure that this latest development is from the JRA. I don't think it's a flair because it's really isolated to my one knee, and that knee doesn't appear to be overly swollen or hot (infact it's the least swollen of the two). Also the pain seems to be located on the sides and the back of my knee, not really in the joint itself, and often has a 'tight' and swollen feeling without actually BEING swollen. I've talked with my Rheumy, and we checked for a cyst of joint fluid, but the sonogram showed nothing. He now wants to get an MRI done, but we're still waiting on approval from my health insurance. It's really starting to freak me out. I am TERRIFIED of loosing ROM in this leg...I've already had an elbow fuse on me (my right one..natch) and my wrists and ankles are pretty much frozen. The thougt of loosing another joint, and one I REALLY depend upon to get around independantly is almost too much for me to bare. It's really starting to affect my mobility and my daily routine....I want to KNOW and I want to know what I can do to fix it!
So I thought I'd ask here on the off chance that someone else might have experienced a similar thing? I'm just paniced and frustrated and worried here and I can't stand sitting and doing nothing while more damage is potentially being done.
x-posted
|
|
(comment on this)
|
| Monday, January 26th, 2009
| |
5:18 pm - Labor and Delivery with JRA
|
jillkatherine
|
Hey all!
My husband and I are expecting our first child in March. Having had JRA my entire life (diagnosis at age of 17 months), my first gut reaction to the idea of labor pain is "give me the drugs!", because I've sought relief immediately for pain for almost 27 years. On the other hand, I've always chased CAM treatments first before I consider pain meds (warm baths, massage, etc).
So, my question is, have any of you given birth, and with or without pain meds? Half of me wants to be an active participant in my labor and wants to try other positions, but I'm affraid the arthritis pain plus the pain of labor will make me want to lay flat on my back for the duration. The other half of me just wants to throw in the towel as soon as I get to the hospital and get the epidural, and enjoy the time pain-free with my husband and family. I have no shame in asking for pain meds, but my instict tells me not to lay flat on my back for the duration of the labor.
Thanks to all who have any input! :)
|
|
(1 comment | comment on this)
|
| Tuesday, January 6th, 2009
| |
10:09 am - Happy 10th Birthday Knee Replacement
|
titaniumhip
|
It seems like only yesterday I was screaming for the sweet release of death from the pain that you caused me.
They say that time heals and you forget all the agony.
Nope.
Not true.
I still totally remember the blinding torment that you caused me.
Hehehehe
|
|
(comment on this)
|
| Sunday, December 14th, 2008
| |
4:09 pm - newbie.
|
the_diving_bell
|
*What's your name? sky.
*How old are you? 16.
*Where were you born? ft. wayne, IN
*Where do you reside now? michigan.
*What are your hobbies? i am really into films/filmmaking, photography and reading.
*Married, children, pets? i have a cat and a dog.
*What kind of work do you do (if you work)? i don't work. lol.
*Do you go to school? If so, what grade level? i'm a sophmore.
*When were you diagnosed with JRA? around the age of 2.
*How did your diagnosis come about (in other words, what's your JRA story)? well, i already knew how to walk pretty well then, my mom noticed i was back to crawling so she took me to the doctor.
*What medications have you been on to help you? i've been on naproxen but, was taken off after a couple of years because, it caused me to have an ulcer. now i just take motrin.
*Any comments on those medications (likes, dislikes, side effects)? listed above. :]
*Have you ever been on any other treatments for your JRA? If so, what? i have had cups put into my shoes. i also had to go see a doctor about 5 years ago because, my foot froze up (it literally couldn't move) so, i had to get therapy for that.
*What's your biggest difficulty with JRA? my knees and ankles.
*What's your greatest triumph over JRA? i rarely complain so, i'm pretty proud of that.
*How do family, friends and others around you react to your JRA? it's pretty normal because, i've had it for so long.
*Who or what has been you're greatest "crutch" (in other words, who/what have you really been able to lean on)? my mom. :]
*Do you have any home remedies or things of that nature to share that work for you and your JRA? i have these sweet ice raps that fit around your ankle or knee perfectly. :]
|
|
(2 comments | comment on this)
|
| Tuesday, November 4th, 2008
| |
1:48 pm - Knee draining?
|
lberghol
|
So I've been having a horrible time with mt right knee lately, very difficult to straighten or bend it, a loss of range of motion to the point where I can't bend it to sit properly and have to stick it out in front of me to avoid pain and discomfort (very hard to do on the subway I have to say)...at first I thought it might be a flare, but since none of my other joints were affected and the pain didn't seem *quite* the same (located in the back of my knee rather then the front etc) that diagnosis didn't seem quite right...
I saw my Rhuemy yesterday and he felt it might be a Bakers(?) cyst...so on Friday I go to get an ultrasound, and if a cyst is found they're going to drain it and inject it with steroids...
I was just wondering if anyone else has had a similar procedure? I have no idea what to expect..if it will be painful, if I'll be able to go into work afterwords etc etc.. I've had JRA for 28 years and I've never had something like this done before so any info would be appreciated! :(
x-posted
|
|
(1 comment | comment on this)
|
| Tuesday, October 21st, 2008
| |
11:38 am - JRA friendly Yoga / Exercise DVD?
|
lberghol
|
Hey all...
I've been rather alarmed by how stiff and sore I've been lately, and I wanted to try and do something about it... Alas at the moment I don't have the time or funds to join a gym or a class (though I would like to) So I thought the next best thing might be a low impact stretching/yoga/exercise video that I could do in my own home. Do such videos exist for RA/JRA sufferers? Do any of you have some that you would recommend?
Thanks guys!!
x-posted
|
|
(comment on this)
|
| Wednesday, August 27th, 2008
| |
1:52 pm - Hey!
|
passion_heart
|
*What's your name?Genny
*How old are you?15
*Where were you born?Phoenix, NY
*Where do you reside now?Mattydale, NY
*What are your hobbies?singing, reading, making vids, writing fanfiction
*Married, children, pets?one dog, names Bear
*What kind of work do you do (if you work)?student
*Do you go to school? If so, what grade level?yep. 10th
*When were you diagnosed with JRA?7th grade
*How did your diagnosis come about (in other words, what's your JRA story)?I started getting really stiff in the neck.
*What medications have you been on to help you?Methotrexate
*Any comments on those medications (likes, dislikes, side effects)?It works great!
*Have you ever been on any other treatments for your JRA? If so, what?nope
*What's your biggest difficulty with JRA?Not being able to do things i was able to do before
*What's your greatest triumph over JRA?nothing
*How do family, friends and others around you react to your JRA?they treat me the same
*Who or what has been you're greatest "crutch" (in other words, who/what have you really been able to lean on)?my mom
*Do you have any home remedies or things of that nature to share that work for you and your JRA?nope
|
|
(11 comments | comment on this)
|
| Saturday, August 2nd, 2008
| |
3:56 pm - RA scholarship
|
flyfreeizzie
|
Hi All, Anyone need a scholarship for college or technical school? For the first time in the world of arthritis, I am happy to announce that 10 scholarships up to $10,000 each will be awarded to a person with RA or their family member. The company is UCB, one of my clients who is new to the rheumatology field. The Scholarship Program is being announced in this first year through rheumatology centers and Arthritis Foundation chapters in select states (CA, NY, TX, MD, MA, AL, MI, PA) as well as through other channels so anyone in any US state is eligible who is a student in an academic or technical school. Time is short. The deadline for applications must be postmarked by September 5, 2008. Attached is the application and program description. If you cannot open the files, please email me ASAP with your name, address and phone. I will make sure an application is sent to you right away. Please forward this announcement to anyone affected by RA who you think may be interested. This is a fantastic opportunity to help a person affected by RA. Thanks so much,
Amye
Amye L. Leong, MBA
President & CEO, Healthy Motivation
Spokesperson & Director of Strategic Relations,
United Nations-endorsed Bone and Joint Decade 2000-2010
Santa Barbara, California and Paris FRANCE
*******please let me know if you are interested and I will give you the email of Amye, I just didn't want to post it all over the web randomly.... *****
|
|
(4 comments | comment on this)
|
| Wednesday, July 16th, 2008
| |
11:52 am - New Community
|
|
| Monday, May 26th, 2008
| |
4:15 pm - *waves sheepishly*
|
zansa_san
|
I'm a newbie - to LJ and this community. But I wanted to say hello, and post. Honestly, I'm excited to meet (sorta) other people with JRA.
current mood:  groggy
current music: "Dammi tu forza, o ceilo" - La traviata
|
|
(6 comments | comment on this)
|
| Tuesday, May 20th, 2008
| |
4:55 pm - Hello I'm new
|
daina76
|
Hello, I'm new here and just wanted to introduce myself. I've recently moved to a new state and am currently in the process of finding yet another rheumatologist. I hate that because it took me five years to find the last one. Wish me luck
*What's your name? Daina
*How old are you? 32
*Where were you born? Columbus, OH USA
*Where do you reside now? Syracuse, NY
*What are your hobbies? Scrapbooking, crochet, knitting, cardmaking, reading
*Married, children, pets? Married (will be 6 years the end of June). I have one three year old man-child who is the greatest son ever.
*What kind of work do you do (if you work)? I'm a stay at home mom
*Do you go to school? If so, what grade level? Still trying to get that elusive college degree
*When were you diagnosed with JRA? I was around 9
*How did your diagnosis come about (in other words, what's your JRA story)? When I was about 4. I complained a lot about my feet hurting. After bunches of tests and about 5 years I was diagnosed with polyarticular JRA. I have it in every joint of my body. I have only had to have surgery on one of my feet and my jaw, so far...
*What medications have you been on to help you? Currently taking Enbrel and Methotrexate and Ibprofen and other pain killers when needed, but not much help right now. I've been on just about every drug out there..
*Any comments on those medications (likes, dislikes, side effects)? Most of the Nsaids really upset my stomache. Aspirin is horrible.
*Have you ever been on any other treatments for your JRA? If so, what?Cortisone injections, PT, OT, the usual
*What's your biggest difficulty with JRA? Caring for my son. He's very active, sometimes it's hard to keep up..
*What's your greatest triumph over JRA? I was told at age 8 that I wouldn't be able to walk by the time I was twelve. Still walking....
*How do family, friends and others around you react to your JRA? My mom (she passed away last year) always tried to stop me from doing anything that would cause me pain. My Dad wasn't really in the picture, when he was, he didn't believe that I was in pain..
*Who or what has been you're greatest "crutch" (in other words, who/what have you really been able to lean on)? My friends
*Do you have any home remedies or things of that nature to share that work for you and your JRA? Not yet, but open to suggestions
current mood:  cynical
|
|
(1 comment | comment on this)
|
| Wednesday, May 7th, 2008
| |
11:44 am - Anti Inflamatory Diet?
|
lberghol
|
I started physical therapy recently and my PT was concerned by the amount of medication I'm on (which I personally don't think is a lot from what I've seen..I'm currently on Humira, Methotrexate, Mobic and stomach medication, and it's been jeeping my JRA in check quite nicely.). He wanted me to try an anti inflammatory diet to try and reduce my meds. I have to say I'm skeptical, but I'm willing to research anything! I thought I'd check in with you guys to see what people with first hand experience have to say!
Has anyone ever tried an anti-inflammatory diet? Did you have any success with it? Do you know of any sites with good info on them? I'm curious!
x-posted
|
|
(2 comments | comment on this)
|
| Tuesday, March 11th, 2008
| |
9:23 pm - meds and nausea?
|
le_lac_monstre
|
hey gang,
I need some suggestions/advice for dealing with/minimizing nausea from NSAIDS. I've been on them since I was 2 (with breaks for steroids) and have never found one that didn't come with some degree of nausea. Lately things have gotten to the point where I'm so nauseous I can't even fall asleep. (I called my Rheumie last week and got switched to a different one - so far I've had one dose and I'm struggling to keep my dinner)
I try to eat a lot of yogurt and drink a lot of milk to keep my stomach coated - lately I've taken to carrying applesauce and pudding cups around with me. Any other thoughts, suggestions or similar experiences?
thanks
|
|
(6 comments | comment on this)
|
| Thursday, March 6th, 2008
| |
3:37 pm - Shoes for thought?
|
lberghol
|
I have the hardest time finding good shoes thanks to my JRA (which I am sure you guys can relate to!). Nothing I try seems to make the aches and pains any better... recently however my doc got me custom orthodic inserts for my shoes, and put me in a larger shoe size. I've really seen an improvement since that change, my feet and legs seem to hold up a lot better after a day of walking. However, this also means that at the moment I only own one pair of shoes that I can actually wear....
My New Balance 992s are SUPER comfy:
Alas, they are also super casual and don't "dress up" very well. I really need to diversify..so I thought I'd ask you guys (since you would know best!)
What are your favorite comfy shoes?? Bonus points if they have a removable sole (for orthodics) and are adorable (I've been wearing ugly shoes all my life thanks to the JRA, I would like to have 'cute' footwear for a change)
Thanks guys!
x-posted
|
|
(7 comments | comment on this)
|
| Monday, January 28th, 2008
| |
1:53 pm - HI!!!
|
x0_baby_doll_0x
|
Hi everyone! I am so glad I found this community...I'm glad I'm not alone.
*What's your name? Colleen
*How old are you? 20
*Where were you born? Princeton NJ
*Where do you reside now? NJ still
*What are your hobbies? going to class (I'm boring lol)
*Married, children, pets? single, no children, wonderful miniature pinscher named ginger
*What kind of work do you do (if you work)? unemployed--full time student
*Do you go to school? If so, what grade level? sophomore in college
*When were you diagnosed with JRA? when i was 1
*How did your diagnosis come about (in other words, what's your JRA story)? my ankles swelled up really bad and they tested me for lyme and everything else
*What medications have you been on to help you? non so far
*Any comments on those medications (likes, dislikes, side effects)? naproxen never has ever worked but they keep prescribing it for me in higher dosages
*Have you ever been on any other treatments for your JRA? If so, what? no they won't do anything to help me, only keep prescribing naproxen
*What's your biggest difficulty with JRA? it affects my knees and left wrist and i'm a lefty go figure and having to see a eye dr, rheumatologist, get xrays monthly, bloodwork every 6 weeks, it hurts to walk sometimes
*What's your greatest triumph over JRA? i can still walk and see :-)
*How do family, friends and others around you react to your JRA? sometimes i dont talk about it because a-no one seems to care b-i hate complaining
*Who or what has been you're greatest "crutch" (in other words, who/what have you really been able to lean on)? my mommy demands the best medical care for me
*Do you have any home remedies or things of that nature to share that work for you and your JRA? working out seems to work
|
|
(12 comments | comment on this)
|
| Friday, August 3rd, 2007
| |
10:32 pm
|
baumanii
|
Hi folks! I just wanted to say what a thrill it was to discover this community. :)
*What's your name? Liz
*How old are you? Just turned the big 3-0 in May
*Where were you born? NC
*Where do you reside now? NC
*What are your hobbies? Reading, painting, drawing, cross-stitching, playing way too much World of Warcraft
*Married, children, pets? In a long term relationship, no kids yet, but we do have a very spoiled kitty
*What kind of work do you do (if you work)? I'm a medical technologist...or more plainly put, I'm the person who performs all those lab tests that your doctors order on you(well, some of them. :) ).
*Do you go to school? If so, what grade level? I've been all the way through college and then some.
*When were you diagnosed with JRA? at age 12
*How did your diagnosis come about (in other words, what's your JRA story)?
I was very fortunate all things considered. My polyarticular JRA had a very aggressive onset, and it spread to each of my joints with amazing speed, starting with my hands. But luckily I had a very good pediatrician who recognized my symptoms and immediately sent me to Duke Medical Center where I was treated in its pediatric rheumatology clinic. I had access to wonderful doctors and therapists and also to very good treatment options.
It was rough going in the beginning though. I'd had twelve years of being normal. I'd always been athletic and was just discovering that I had a fairly good aptitude for track(I could actually run under a six minute mile in those days. ;) ). Going from perfect mobility to crippling pain was more than frustrating. I was angry and depressed for a long time. But thankfully I had an incredible family(who are still incredible) and wonderful friends(who still don't always understand the arthritis but sure try) who helped me get through those less than happy times.
Eighteen years later I've finally found a cocktail of drugs that works almost perfectly. I do have some finger and feet deformities and a good deal of airline grade stainless steel in my left hip thanks to a fracture, but on the whole I have my mobility back. Painting and drawing have become my new "six minute mile." I have a job that I enjoy and someone special to share my life with. There are still bad days(we all have them), but all in all, it's a pretty good life. :)
*What medications have you been on to help you? Currently I'm on Enbrel, Arava, and Plaquinel. But I've been on Methotrexate(pill and injection), Gold shots, aspirin, Naprosyn, Voltarin, Sulfasalazine, Daypro, Prednisone and others.
*Any comments on those medications (likes, dislikes, side effects)?
The aspirin treatment was GI torture. Methotrexate made me sick to my stomach, both the pills and the injections, but worked brilliantly on the JRA. I had a brief six month remission while on Gold shots, but at the time the shots had to be given intramuscularly in the rear...so a little embarrassing. It's been twelve years, so hopefully that has changed. Enbrel works amazingly well, but I always get a red itchy bump(like a bug bite) at the injection site for a few days afterward.
*What's your biggest difficulty with JRA? Believe it or not, it's not the pain or the limitations. It's the ignorance of others. Growing up I can't tell you how many times someone looked at me in complete disbelief and vehemently insisted that I was much too young to have arthritis. There have been days I've wished that I'd had JRA information pamplets to hand out. Look! Take that! It is SO real!! ;)
*What's your greatest triumph over JRA? Enjoying my life. Not letting it hold me back by making the most of every day and growing as a person.
*Who or what has been you're greatest "crutch" (in other words, who/what have you really been able to lean on)? Definitely my parents.
*Do you have any home remedies or things of that nature to share that work for you and your JRA? I had a Chemistry professor in college who swore by raisens soaked in gin, but I've never actually tried that myself.
|
|
(1 comment | comment on this)
|
| Saturday, July 28th, 2007
| |
6:21 pm - Gardasil
|
1politicalsong
|
I recently got a preliminary diagnosis for rheumatiod arthritis. I'm 18, and the symptoms came on VERY suddenly. The doctors told me it might have something to do with a vaccination I got about a month ago for Gardasil, the new product that "protects against HPV." I was told that this vaccination was necessary for my health and that all teenage girls should get it. Now that I'm reading more about it, seeing that many of the young girls who were vaccinated developed various types of arthritis, I realize that I should have done more research before accepting it. Does anyone have more knowledge of the adverse effects of Gardasil?
Thanks in advance.
|
|
(1 comment | comment on this)
|
| Thursday, July 19th, 2007
| |
1:36 pm - A New Member
|
sweet_sugarplum
|
Hello all, I was just surfing around my LiveJournal areas and came across this JRA sight. I was impressed to find a sight dedicated to JRA. So, I had to join.
current mood:  tired
|
|
(2 comments | comment on this)
|
| Tuesday, July 17th, 2007
| |
2:30 pm - Arthritis Foundation
|
libramd
|
Hey everyone I got an email from the Arthritis Foundation talking about donations. Right now till September any donation will be doubled so if u donate $50 its actually $100. I know alot of us are busy spending our money on medications and whatnot. I just wanted to let everyone know encase you know anyone looking to help out with research. I hope everyone has a good day.
current mood:  hungry
|
|
(comment on this)
|
| Monday, July 2nd, 2007
| |
4:06 pm - new member ^^
|
|
|
|
|
|
![[info]](http://l-stat.livejournal.com/img/community.gif){kind=small}
j_r_a
productive