Advice for Better Living Archives

How can a person come to grips with the very real probability of losing independence?

IN response to your question, I know that the thoughts of losing your independence are so depressing!  However, usually the loss of independence is such a gradual thing that you do have time to deal with it over a period of time.  I always think of people like Christopher Reeves or others who lost total independence so suddenly, with no preparation whatsoever, then I feel fortunate to have what I have.  I have a strong faith in God that has helped me to persevere through all that I've been through.  I pray that he will give me what I need to cope and adjust.  Also, I always remember that everyone has limitations in some form or another.  I have a strong mind and maintain confidence in myself in other areas of my life and I focus on my strengths. -Bonnie

I recently changed jobs from an office atmosphere to manual labor (6 months ago).  I was just recently diagnosed with RA and my joints already seem to be getting worse.  I have been on Plaquenil for the last 4 months and it seems to do nothing.  My wife and I are trying to have a baby so Methotrexate is not an option at the time.  My question is:  Is the manual labor going to make my joints worse?  Obviously it will when I am not in control of my RA, BUT once (if ever) I am able to control the RA, will the manual labor continue to hurt my joints?  Would going back to an office atmostphere benefit me in the long run?

Your thoughts?

I do manual labor for a living.  I am currently off as my employer says they don't have work within my restrictions.  I guess the answer to your question is how willing is your employer to accommodate, which joints are involved and can you safely use joint protection techniques to do your work.  But, I would seriously take this up with my doctor at the next visit.  He should have the say, he's supposed to be the expert.  -Toni

My name is Sandra... I have been diagnosed with osteoarthritis in my spine, feet, hips and wrists.  I have an appointment with a rheumotologist very soon. My medical doctor had me on Celebrex and then Arthrotec... they didn't help. I am so afraid of what I am facing.... I looked up a lot of things on the net... but this site seems to be about real people helping real people.  I would LOVE to hear from anyone ... thanks.

Any suggestions for Sandra?

I have osteoarthritis in my upper spine and my hands. I take vioxx for pain as needed. My Dr sent me to have physical therepy three times a week it really helped. Now I have to exercise three or four times a day so I wont be in a wheelchair. My hands I have thermal therapy. Every night I put them in hot wax. Cover them with the liner put on the mitts and keep them warm for 15 mins. My hands are so much better. Now I can move my fingers and the swelling is going down. I hope I have helped you and good luck in your treatments. -Janet 

Anybody have advise on how to deal with insensitive comments from Co-Workers? If I hear "your too young to have arthritis" or "Theres nothing the doctor can do for you" or "You dont look sick" one more time I think I am going to scream!!

Ewwww! How do you handle it?

To comments like your too young to have arthritis I just mention the fact that even babies have severe arthritis.  That usually shuts that person up.  To those that say there is nothing you can do for it, I simply ask with a smile "When did you go to medical school?".  I do try to ignore lots of them but, sometimes you just can't.  I find a snappy comeback usually leaves them wondering what hit them, like one morning I was having a bad day, and my boss asked me how are you, that is always a dangerous question out of him.  I said not the best, and his remark was to get over it, I happened to remember that statement and told him that comment was not helpful, but hurtful, so let's start this day over.  -Toni

This is really difficult. I am 22 years old and have had RA since I was 19, and I don't know how many times I have heard the exact comments you've mentioned. What I have come to realize is that people who make such comments are just uneducated. Now, when I hear them, rather than letting it bother me, I try to very nicely educate them. And it really depends on how the person you're "educating" takes it. Some people don't care to learn or don't like the idea that 'you know something they don't', and with those, you just have to let it go. But more often than not, I find that people do care to learn. Amongst co-workers, most of them knew of my condition. I didn't make an announcement of it, but after a month of working there, people noticed that I took the stairs one-by-one and it prompted questions. Some would forget because we have to remember that we do appear (for the most part) healthy. My biggest mistake has been pride. For a long time, I almost refused help. Now, I try, and if I can't do it myself, I'll ask for help. I worked in the Information Systems dept of our company and I couldn't haul a computer upstairs for work. But since the few others in my department knew, they usually would be willing to help and do it. If they weren't thinking and asked me, I told them I would bring everything I could upstairs but that I might need a little help. That statement would often turn the light-bulb in their head on.

What I'm really trying to say is, don't get upset, educate. I know its frustrating. I'm young and that makes the concept of having RA even more confusing for people around me. This is another reason why it is so important to educate ourselves on our condition. Sorry this was so long, you just got me started! :)   - Shelley

hi! im just looking for help all the way around. i am really new with all of this and feeling very overwhelmed, frustrated and lonely. my doc says i am not all that bad....but he dont have to live like i do! i have a wheelchair that i am very reluctant to use. if i go somewhere and take it out it would look strange...cos I drove there and then i would be toolin around in a wheelchair. i guess im just looking for some kind of direction. i am on no med for any thing arthritis related. i no longer have med ins. therefore can not afford to go to the doc much less the meds! i dont know what to do about any of this! looking for work is frustrating. im still not sure if i should tell any prospective employers of my condition. its difficult for me to stand for 4 hours at a time. i get shinsplints extremely easy! i just want help in understanding this awful disease. i understand all the other diseases i have but this one. and i am going crazy! -Denise

Do you have some advice for Denise?

denise
try the antibiotic protocal--it's inexpensive and work's just as good or better than the ra dmards or nsaids without the side effects--go to roadback.org read the protocol section & take it to your doctor.
you can also check with others there who have been using the antibiotic protocol
i have ra and have almost been killed twice by dmards-methotrexate & remicade--banged up my heart, had a heart attach & now have a defribillator/pacemaker implant.
so, checkout roadback.org
good luck
vince

I'd like to hear some ways that women in particular help
keep that all important self-esteem high. It is really hard as we swell, gain weight, retain fluids, sweat like pigs, and get gripy and irritable to
maintain that sexy glow, if you know what I mean. What works for you, gals?

The most important thing that I have found is that if I can muster up the energy to at least take a bath and put make-up on sometime in the morning, I actually feel better about myself and my self-esteem goes way up. This is going to sound a bit silly, but I also bought some pheromone-containing cologne and the pheromones apparently also offer increased confidence. All I know is that when I wear the stuff, I am very much at peace with who I am as a woman. Hope this helps. Oh...the name of the cologne is Pure Instinct Pheromone cologne. 

Ladies? Let's hear from you!