hey guys, being new to a diagnosis and starting to cope and live with a chronic condition, i have had many pitfalls and epiphanies in the last few months, and weeks. i was wondering aside from all the medical lingo and education what you all have learned in the way of life lessons about living with RA. ya know the funny little catch phrases you tell yourself on a bad day, or the hard learned living in the trenches advice you can offer a newbie like me. i am really interested to hear the positive aspects and wisdom from people who really live it, thanks btw
Dear Erica, your post was so uplifting to me....I'm gonnna go shopping tomorrow! Just for me! What a grand idea. I've had a long recovery, so all of my night gowns and robes have been worn to a frazzle, so I started replacing them , I found some nice 'chamises' in Kohls and robes that are sooooo soft and cuddly that I bought 2!! (pink and aqua).
I am planning to get back on the golf course with my hubby, so that is my 'big' goal. I also get to play with my son in the summer. I plan and count on that.
I like garage sales, and go every Saturday , in my speedy silver ford Focus. I have so much fun. I go where ever I want to go, and hang the gas!! San Luis Obispo is the best place to find bargains the college students(from Cal Poly University) 'give away' the nicest things.
I like to walk the beach, 2 blocks away from my house, so without warning to my husband I announce 'come with me to walk the beach'!! We take off, and especially enjoy the sunsets. Lovely.
I gained weight on the prednisone (which I'm off of completely, rah! an accomplishment!! It took tapering slowly for 7 months, from 15mgs ) Hoping I'm not going back on it. But, the reason I brought this up is I try to avoid 'pleasing myself with FOOD" , so I can't chow-down and treat myself that way. (I love choc. sunday's with nuts)
I found so many dear friends on this forum and respond, chat with them everyday, that's so important to me. So many people here really understand what we are all going through and are supportive and when we need a boost over a rough spot, they are there!!. I'm so happy for the support I've gotten about my tests lately. I'm very thankful.
Erica, I'm so glad you started this thread , i appreciate all your good ideas for making yourself feel better. We need your cheerful help.
Lynda
There are a few things I have learned about myself, and people in general because of ra. 1) Just like there are really wonderful and supportive people out there, there are otherwise good people who just dont get it...and maybe never will. I dont like them any less for their lack of understanding (at least not anymore I dont), but have accepted the reality that not everyone is gonna get it. 2) Rest when you need it...defend your right to be a slug when you need to be a slug. 3) Do stuff when you feel like you can...defend your right to go out on the first day that you are feeling well and shop till you drop, go for a walk, go ride roller coasters...whatever. 4) Never resign yourself to the idea that it's all downhill from here. RA has ups and downs. Some people go up and down from one day to the next..for others it is weeks, months, even years at a time. 5) Always remember that no matter how bad you feel, someone out there is dealing with more pain and grief than you can even imagine. It always puts things in perspective. 6) Reach out to others who need a kind word, a good laugh, or a shoulder to cry on. The begining is always tough. There is a lot of waiting involved. Waiting for diagnosis, waiting for approval of meds, waiting to see if meds work...sometimes repeating the process a few times..but it gets easier. You adjust as do the people around you. Hope this helps. I've only learned one thing worth repeating... Nothing in life can define who you are. Unless you let it. This is the kind of thread that helps me deal with RA. I took the past couple days off from work to rest, to rejuenvante and to think about who I am and what I want. One of the things I have decided to do is to embrace those things that are important to me. I have learned a whole lot from RA. Although I have had it for 15 years, it has only been the past year that I have really struggled with it. I have learned it is ok to not be Supermom or Superwife. My children and husband are capable of doing things for themselves despite what my brain tells me. I have learned that it is ok to ask for help or to ask someone to get something for me. If I do not ask for help, I tend to overdo things and that puts more of a burden and stress on my family because then my RA wants to really bug out. I have learned it is ok to whine. There is a ton of stuff to whine about with this ridiculous disease. If I don’t vent it, my hair will stand on end and electrical charges shoot out the ends of my fingers destroying everything around me. I have learned it is ok to be completely and utterly frustrated. I have learned it is ok to be depressed every now and then. I have also learned how to pull myself out of that funk and that no one else but me can do that. I have learned it is ok to ask questions to your doctors. When I ask questions to my docs, I expect and demand answers to the best of their abilities. If they do not have an answer for me right away, I expect a phone call within a couple of days with an answer. I have learned to really take a good look at myself and make some life changing and personal growth improvements. I have learned to laugh at myself and with myself. Sometimes things can be very comical with RA. I have learned just how valuable my beloved husband is and how hard this disease is for him also. I have learned that my children love me despite my limitations I have in life right now. It doesn’t matter to them whether or not I attend some school event. What matters to them is that I still am “mom” and will always be that one special person in their lives they can turn to. I have learned to love myself despite the physical, mental, and emotional changes that come along with having RA. Most importantly, I have learned that RA doesn’t have me…I just have RA. I have learned to take the time to do something that I truly enjoy on those days that I feel good, instead of trying to do all that things that have to be done all in one swoop. I love to cook with my kids--we have so much fun together and sometimes it just gives them a chance to talk to me and let me know what is going on in their lives, what they think about, what they worry about. I love to do cross stitch. Sometimes my hands will not cooperate but even if I can just look through a couple of my stitching magazines it gives me a lift. I love to go offroading with my husband in his Jeep. When I know we have a trail ride coming up, I have learned to let the house work slide a little so that I have built up enough reserve energy/strength to go with him and enjoy our time in the woods. I agree--superwife and supermom are things that I do not have to be. I am Andrea--wife, mother, friend, volunteer, etc. that has to deal with RA. Not an RA patient that has to deal with being all those other things. Agreee with you all. We all lead such busy busy lives with too much to do that we dont really look after ourselves properly. Cordy told me not to rush to do everything I normally do when I'm having a good day or two. This initially felt totally alien to me but slowing down and savouring the day is a much better idea. Having a clean freak obsession, I've been learning to leave the dusting and hoovering... only my family will know what an achievement that is
More MEMEME time is very important. I've learned to live in the present. I learned that I'm not defined by my career but by the kind of person I am. I learned that what you put out in the world is returned to you three fold. If you want people to be good to you, then you must be the example. I knew it before RA but I have had it reinforced that my husband is the most important person in the world to me. I've learned new skills and crafts, taken classes, and the importance of not letting my brain become mush. I've found that a sense of humor sometimes is the only thing that will get me through the day. I laugh at myself and the disease. And if none of the above work, I've learned that pain control can be good for you.
I still plan for when they find a cure.
Crunchy.. I agree with all your points..
The big thing for me is to slow right down. The less rushed I am the better for it.
I have learned not to hoard life, instead I enjoy something, one thing, anything, everyday even if that means I have to force myself to search for that moment like a lost, shiny button in a weed patch.
I have learned to be patient, forgiving, and accepting…
of myself
rather than just of others
I have learned, but not without great struggle, that asking for help is socially and emotionally unobjectionable. Additionally, I have learned that sometimes one must first be selfish in or to be selfless.
To life’s lessons: prosit! HappI have learned what amazing, admirable people there are on this board! You are people I want to learn more from - your insightful attitudes are inspiring. Thank you!
Copyright ArthritisInsight.com