Hi. I guess I’m not really asking a question just needing to get some stuff off my chest. I’m having a much harder time dealing with this diagnosis than I thought I would. It’s not just the physical pain but mentally I’m just really down in the dumps. I don’t think I’m depressed and God knows I don’t want to go on anymore meds it’s just that everything is so unknown. I don’t know from day to day, sometimes hour by hour what next or will I be able to participate, go to work, get out of bed. It’s just the unsurity of everything. I just started seeing a new Rheumy that I really like so medically I think I’m getting good care but it’s been a real stain on my marriage and my job is really up in the air. Pre-RA I had a lot of energy and and was able to function well in my job but now I can barely get out of bed and make the 35 minute drive. Half the time I’m exhaused after my shower and want to go back to bed. Everyone tells me it will get better since I’ve just recently started taking Plaquenil and a sleep/pain med and it will take some time to start working but these are people who don’t have RA so there’s no comfort there. I know no one can guarantee that it will get any better and I now that life as I knew it is over and I guess I’m just having a hard time of it. Thanks for this forum and for taking the time to read this. I’m open to any suggestions and advice from people who do know what it’s like. Thanks again.
Cynvee wrote: I think I’m getting good care but it’s been a real stain on
my marriage and my job is really up in the air.
Ardeith writes: You need to encourage your husband to do some research
about RA for himself. The Arthritis Foundation website is a good place to
start. In all probability, he aches for you, wants to do something to make
it all good again, and there is really nothing he can do except give you the
emotional and mental support you need. The good ones always want to fix
everything, and have a hard time dealing with something they can’t fix.
As for your job…without knowing exactly what you do…I can throw a
few general suggestions your way. First, stop off at your doctor’s office
and grab some of those pamphlets about RA…take them to your immediate
supervisor with the request that he/she read them, then talk to you about
what can be done in your work place so you can continue to do the excellent
job you’ve been doing for them.
If you’ve been lifting heavy things, or you have to be on your feet a lot,
maybe some aspects of your job can be changed so that you can do your job
without damaging yourself. If your wrists and hands are affected, and you
have to type a lot, see if your bosses would let you get a different
keyboard. I don’t know the exact name of mine, but it is a Microsoft item,
has risers to set it at any angle I want, and there is a wedge shaped space
from between 6 and 7, down to between B and N…the highest point of the
keyboard is at that wedge, and it slants a bit to either side. I can’t use
a straight keyboard without a lot of pain in my wrists, but this one is a
dandy. What would be ideal for my hands and wrists would be to have the
keyboard wrap around a big ball…setting the keys at an even greater
slant…so I wouldn’t have to try to twist my wrists even the little I do
now…
Last job I had, I was on the phone all day, and my neck gave me hell. So, I
asked for, and got, a headset phone that didn’t require me to try to hold
the handpiece between my ear and my shoulder. Maybe something like that
would be a help for you too. If you are doing a lot of writing by hand,
see if you can find ball point pens in fat casings…the fatter the pen,
the less strain on your hands…Bic makes a four-color ball point in a
fat casing…and my Dr. Grip is my true love…
Cynvee wrote: Pre-RA I had a lot of energy and and was able to function well
in my job but now I can barely get out of bed and make the 35 minute drive.
Half the time I’m exhaused after my shower and want to go back to bed.
Ardeith writes: Have you tried taking a shower at night instead? With,
maybe, just a touch up if needed at the sink in the morning?
Cynvee wrote: Everyone tells me it will get better since I’ve just recently
started taking Plaquenil and a sleep/pain med and it will take some time to
start working but these are people who don’t have RA so there’s no comfort
there.
Ardeith writes: It will get better…I’m a people who has RA, and I know.
Cynvee wrote: I know no one can guarantee that it will get any better and I
now that life as I knew it is over and I guess I’m just having a hard time
of it.
Ardeith writes: No, no one can guarantee that…but with proper
medication, and proper care of yourself, it doesn’t have to devastate your
life. So, you can’t bang away with a hammer and chisel to sculpt granite
anymore…bet you can still sculpt clay…or whatever the equivalent
things are in your life. So you can’t play the grand piano with the
Philharmonic Orchestra anymore…you can still enjoy music.
Like that…
As for your husband and marriage…some men aren’t going to be able to
adjust to something like RA that changes their wife…some will…I hope
yours can. You may find that some sexual activities hurt more than they are
worth these days… but if a man is willing to experiment, there are a lot
of things that can still be wonderful between you…ask him. He may have
worries about that…and about hurting you.
Honey, I’ve had RA for about 34 years now…and I guarantee you can enjoy
loving …with some willingness to experiment. Contact me privately if
you need to know more explicit things…
Ardy
Dear Ardy: Thank you so much for your thorough response and your kind words of support and encouragement. Some of what you suggest (like just shower the night before) is so obvious that I realize I’ve allowed myself to be overwhelmed by the diagnosis. From now on I’ve vowed to just take this one day, sometimes just one hour at a time and to believe I can do manage this and have a wonderful life.
My job is very demanding as I work as a college recruiter/advisor and so much of my time is spent on the road but I do like your suggestion about the pen and the phone headset as it has become very difficult to grip anything for extended periods. Driving has been a challenge as much of my inflammation is in my ankles/feet and hands/wrists/fingers so I’m finding that I have to allow for lots of rest breaks but I’ve been “stuck” on more than one occasion where I’ve been far from home and just too exhausted to drive back safely. I have to make sure I always a credit card on me in case of emergency stays.
Thanks especially for your encouragement about my marriage and that my life doesn’t have to be devastated by this. You’re right on about my hubby – he is a fixer and I’m sure you’re right, his not being about to make me all better is very frustrating for him. Thanks for helping me see his side of it–I needed to hear that! Your positive attitude after dealing with this for so long means more to me than you can imagine. Hearing from someone who has walked it out for so long gives me great comfort. I am a Christian and find much comfort in my faith and believe that your email is an answer to a prayer. Thank you again and I just might contact you regarding more specific relationship questions. Thank you again and know you are in my prayers. Cynthia
Cynvee wrote: Driving has been a challenge as much of my inflammation is in
my ankles/feet and hands/wrists/fingers
Ardeith writes: Avoid lifting things with your fingers…look for ways
to use your whole hand. For instance, I realized I was lifting coffee and
tea cups with just my littlest finger and causing it to “drift” 'way to the
side. I quit using fancy cups with neat little finger holes…mugs with
handles I can get several fingers through stopped that problem.
Cynvee wrote: Thanks especially for your encouragement about my marriage and
that my life doesn’t have to be devastated by this. You’re right on about my
hubby – he is a fixer and I’m sure you’re right, his not being about to
make me all better is very frustrating for him.
Ardeith writes: Consider yourself blessed indeed. I had one who thought I
was just being lazy when my feet hurt too much to stand long enough to sweep
the floor. Got a better model these days…
Cynvee wrote: Thank you again and I just might contact you regarding more
specific relationship questions.
Ardeith writes: Feel free to do so…