Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
so thanks to members like RASally, i've really become active in my healthcare crap. i dug up an old plastic folder that has like eight sections and use it to keep my current medical stuff: all my current scripts, bloodwork, X-rays, etc. i also started keeping a medical cheat sheet on my computer's desktop. between appointments, when i think of something i want to address, i add it to the cheat sheet. today before i leave for my appointment, i'll print it out and slip it in my medical folder thingy.
i thought i'd share what i have on my list for today, and then when i get back i'll report back. i've found this helps me - i don't forget what i wanted to talk about and my rheumy is pretty open to it. we do my vitals, we do the 'normal' visit stuff, and then i ask the stuff on my cheat sheet if we haven't already addressed it. here's my breakdown:
01/29/2014
Whats with this bump on my left index finger? Has been there for years, sometimes it hurts but not all the time. (originally my rheumy said the DIP joint is *never* involved in RA. i know better now and am going to call her on it.)
Can I get a handicapped parking permit? Walking long distances is becoming troublesome. (i am NOT happy about asking for this. but parking at my school SUCKS and walking at a normal pace before my RA got this bad took about 7 minutes - just to get from the parking lot to the building. now it's practically excruciating. i already found the right form, added my personal information, and printed it out for her. hopefully she can fill it out today and i'll go to the appropriate town office.)
Ive been having some pain on my right side, cannot link to any food or activity. Gastritis/ulcer? Also had a spasm on left side for a few hours one day, has not repeated. (i posted about this in another thread; not sure what it is but hoping to get some idea today.)
Eyes feeling dry after wearing contacts for 8-9 hours; used to be able to wear for 15+ hours without dryness. Should I see an eye doctor? (i've worn contacts for 18 years without problems. some days i can only get away with wearing them for 6 hours.)
I've been experiencing some issues swallowing; not painful but feels like i have a bit of a lump in my throat to swallow around. Also am experiencing some hoarseness apparently unrelated to anything else. (i only just possibly linked this to RA. i've been experiencing it since mid-summer.)
Am taking the following supplements daily: womens multivitamin, 5mg biotin, 13 million probiotic, flaxseed omegas, calcium +d when I remember with a meal. (always verify this day of the appointment when i take my morning meds.)
my rheumy also has me fill out a rapid form every time. i've been filling it out mostly 6-8 on the scale because i've been answering it like 'when it hurts the most, this is how much it hurts'. like, when my wrists hurt (like they do now, mostly the left) it's a constant 3 or 4, but regularly spikes to an 8. i know these rapid assessment forms or whatever they're called are helpful, but they're confusing to me because pain is so relative. if you asked me how much my nose piercing hurt, i'd say a 3 but it was over quickly and then didn't hurt again. when my wrist is a 3, it's CONSTANTLY a 3 and makes me feel stabby and i want to shout at people.
i thought i'd share what i have on my list for today, and then when i get back i'll report back. i've found this helps me - i don't forget what i wanted to talk about and my rheumy is pretty open to it. we do my vitals, we do the 'normal' visit stuff, and then i ask the stuff on my cheat sheet if we haven't already addressed it. here's my breakdown:
01/29/2014
Whats with this bump on my left index finger? Has been there for years, sometimes it hurts but not all the time. (originally my rheumy said the DIP joint is *never* involved in RA. i know better now and am going to call her on it.)
Can I get a handicapped parking permit? Walking long distances is becoming troublesome. (i am NOT happy about asking for this. but parking at my school SUCKS and walking at a normal pace before my RA got this bad took about 7 minutes - just to get from the parking lot to the building. now it's practically excruciating. i already found the right form, added my personal information, and printed it out for her. hopefully she can fill it out today and i'll go to the appropriate town office.)
Ive been having some pain on my right side, cannot link to any food or activity. Gastritis/ulcer? Also had a spasm on left side for a few hours one day, has not repeated. (i posted about this in another thread; not sure what it is but hoping to get some idea today.)
Eyes feeling dry after wearing contacts for 8-9 hours; used to be able to wear for 15+ hours without dryness. Should I see an eye doctor? (i've worn contacts for 18 years without problems. some days i can only get away with wearing them for 6 hours.)
I've been experiencing some issues swallowing; not painful but feels like i have a bit of a lump in my throat to swallow around. Also am experiencing some hoarseness apparently unrelated to anything else. (i only just possibly linked this to RA. i've been experiencing it since mid-summer.)
Am taking the following supplements daily: womens multivitamin, 5mg biotin, 13 million probiotic, flaxseed omegas, calcium +d when I remember with a meal. (always verify this day of the appointment when i take my morning meds.)
my rheumy also has me fill out a rapid form every time. i've been filling it out mostly 6-8 on the scale because i've been answering it like 'when it hurts the most, this is how much it hurts'. like, when my wrists hurt (like they do now, mostly the left) it's a constant 3 or 4, but regularly spikes to an 8. i know these rapid assessment forms or whatever they're called are helpful, but they're confusing to me because pain is so relative. if you asked me how much my nose piercing hurt, i'd say a 3 but it was over quickly and then didn't hurt again. when my wrist is a 3, it's CONSTANTLY a 3 and makes me feel stabby and i want to shout at people.
again, i was told RA does not affect DIP. if i didn't like her as much as i do, i'd be looking for a new rheumy.
she signed the paperwork for a temporary handicapped permit (good for 6 months, will reevaluate then). the pain on my right side she has no clue about.
six weeks ago my liver function was perfectly normal; she said as long as today's blood work is normal, she wants me to go to my GP.
she says the eyes are probably not related to RA because eye issues usually present as more noticeable than dry eye; however on the drive home i remembered i started wearing a different brand of contacts over the summer - that could be the issue.
she is not happy with the course of my treatment. my swelling and pain seem to be increasing and are not responding to mtx and enbrel. she said if there is still no improvement in a month, we'll start looking to try another anti-tnf. i made my next appointment for 6 weeks so my husband can come with me.
i also finally remembered to get a copy of my blood work from december. my esr (sed rate) was 39 (was 33 in september) and my c-reactive protein was 1.1 (was 0.9 in september). so the blood work supports the idea that my swelling is increasing.
as glad as i am that i'm not crazy and that things are getting worse, things are getting worse.
the DIP thing is still bothering me. my finger is visibly turning. maybe i should ask my gp to get me an ultrasound of it - is that how it would be imaged? an X-ray showed nothing.
Stay warm
Bluedogs2
Good luck!