I am looking for any suggestions regarding balancing work, social life and this disease. I am a 911 dispatcher and I als have a part time job building electronic control boards for a friends business of converting vehicles to emergency response vehicles. I live in an area that most people have 2 jobs to survive. I also have been a dedicated volunteer at the local rescue squad for 7 years. Most of any free time I have is spent running others to the hospital. I am an advance dlife support tech. I can't imagine not doing this any more as It is a passion for me. I know my primary job is filled with stress...'911 what is your emergency?'. Anyway, I have been on a lot of meds, changes to the various therapies and have muttled through until now. A couple weeks ago I had some stressors in all areas of my life. I had been doing ok...last Tuesday I noticed a lump at my right wrist...then the lump I ahve had on my ankle got bigger, both knees both feets started hurting. By Friday night I was in terible pain. I took Saturday off, now tonight also. I usually work 2 days 12 hours and then 2 nights for 12 hours. I have an appointment with my rheumatologist this Tusday. Not sure what to sy to him. I have been told I must accept this as life for me now. That one I am having trouble with. Diagnosed 4 yrs. ago. Then toldd that was not it etc. Last year in January 05 they said that without a doubt it is RA. I ahve always been active and stubborn to give things up. Any suggestion would be greatly appreciated.
Sorry for the novel here..
Lisa
Lisa, you just have to keep going. I think staying as active as possible is theDear sptddog, Oh my gosh yes, we'll all be interested in hearing what you doc says! Honestly, I am amazed that people on this board take so many meds.....what a line up!
sarah
Yeah some of us take a handful of pills every morning and then don't forget the injections that we have to do too. Those could be once a week or 3x a week. Depends on the biologic.
Here is my list...and it isnt even as much as some other people take daily. Chlorthalidone and Lisinopril for high blood pressure, Prozac, folic acid, 4 fiber pills, Miralax, morphine, percocet, lyrica, prednisone, advair, albuterol, Lidoderm patches, multi vitamin. Every week 15mg injection of mtx and every other week humira injection.
None of these I can go without. Without the high blood pressure meds my blood pressure is at stroke level. I like to breathe so hence the advair and albuterol lol. I like to manage pain so I can function. I like walking again so I have to take Lyrica. You get the drift here. RA causes so many other health issues with us that sometimes you just cant avoid taking all this stuff.
Hi Lisa,
I have the same struggles with balancing. It is so hard to know if it is time to give something up or better to keep going. I feel like I have lost a battle when I let something go, but appreciate the ways it makes life easier too. Do you have anymore med options? I am on 7 rx now and I don't like it but it keeps me going. I am probably going to add more next time is see the dr. Take care,
Laker
Hi Lisa
Yes you do need to just keep going but at the same time you need to be kind to yourself.Give priority to the important things but also balance rest and exercise. Do what you feel able to but there might be times when you dont want to do anything at all but rest so do it.
Good luck at the doctors
Lisa ( me too)
I've found that what Pin says is good advice. I've learned that I have to balance rest with all the activity or I drop hard. It's better to slow down before you over do it. Dedicate certain times of the day or days of the week where you do nothing but take care of you. Your body needs time to regenerate. Your ming maybe going a mile a minute; but give your body a chance to just be still.
It's not always easy when you have so many things you want to do but in the long run it will keep you going longer. You can go full speed until you burn out.....or you can slow it down a bit and be able to stay active and in the work force for that much longer. Alot of it will depend on you.
Good Luck....and welcome to AI.
Welcome!
The most valuable lesson I have learned in the past 6 months is to LISTEN to my body. My mind might want to keep going, but my body has the final say. I have learned the hard way when I ignore what my body is telling me.
You are carrying a full load! I did too for several months and I crashed and burned. I'm not saying this will happen to you and I'm not trying to be negative. I'm just telling you what happened to me. Best of luck and keep us posted.
Phats
I'm a supporter of the Work Less Party and I strive for slow living and slowWell the doctor visit is over...nto much he said he could do at this point. I am going to switch from enbrel to humira. He has other treatments planned if this does nto work...all the way to the prosorba, blood cleaning treatment. He says he is limited some what due to my intolerance to some drugs. MTX was a real killer on th estomach and he fears that others like it would do the same so he is waiting to see how things go. He also is saying that a regular schedule like all days would be best but he does not want to rock the boat with work just yet so if they won't allow that change on my request he is not writing anything to request it. I guess his thought is it would be best to let other things go in order to keep up the work. I realize that the job is a necessary thing for the insurance but I am having some great difficulty accepting life as...work...home ...work...home and only occasionally being able to do something for fun and wondering how much pain it will cause.
It just does not seem like quality of life is that important...and who wants to live that way. Before all this I would hike, rock climb, bike, all sorts of stuff....now all I have is the rescue stuff and that seems to be a problem. What a pathetic loser to be so worried by that and to only have rescue stuff ....must find something else or go completely nuts!
He has added more meds...like zyban....I have smoked all along..not much but it was never an issue with him..now this last visit it was lecture city. I understand it is bad an i should quit but jeeze....
Anyway...I'll have 6 weeks to see if the switch helps. Of course it all has to get approved first so once that is done it is a waiting game.
Pain from last weekend flare is better but still up there on the scale.
I just started MTX injection form and had no stomach trouble! Just a thought you might consider.
I try to look at RA as I have RA but it doesn't have me. Sure there are tons of things that I cannot do anymore including work but I have learned that I can do other things. I try to email and talk to others that need a compassionate ear and volunteer whenever possible helping women conquer alcohol and drug abuse. I have found it amazing how much I can do from home and even my bed via a laptop.
Those that answer posts on this board are doing a very needed service. I remember when I first found this forum and appreciated everyone that answered my questions and that makes you all special.
Everyone is right that we need to listen to our bodies. I sure hope that you find the right meds soon and can continue to work as I know what a blow it is to not be able to work anymore.
Twelve hours on the job in one stretch is a lot to demand of our bodies...even a sedentary job like mine can take it's toll. One thing I do to help is to take short 5 minute breaks every couple of hours, to get up, walk a bit, stretch, and change my scenery. It seems to help reduce the stiffness. I'm sorry enbrel didn't work for you...it has been my miracle. I hope you have excellent results with humira.
The work you do is important, and I can see why you struggle with the idea of changing. Maybe some small adjustments to your schedule, or taking more frequent breaks can make a difference.
Best of luck to you.