I haven't written in awhile. I know I should be here a bit more to share and to vent the frustrations I have with have this disease! I hate having RA somedays and others it is a blessing to those I meet.
Right now...I am stressed out...and that doesn't help my pain. Money is funny...bills are due...body is hurting and brain is tired of thinking. I know things will get better...BUT...today...I just need to vent it all out and move on. My faith is keeping me sane and the fact that I know this is only a test of my faith.
Yet...it does get hard when your family is going through it with you and you can't pay for things you need and you are too afraid to say it...even my medicines...God, let's not get into that.
I am ANGRY
I HATE...not being able to help my family more and I HATE being SICK! I HATE that people don't understand that when you say you don't feel well...and when you try to explain to them your pain...you get the...AWE BABY CRAP and they start to complain about their knees get stiff and their hands get achy from time to time...YET they have no idea what it is to live in chronic pain ALL THE DARN TIME and ...instead of undestanding my body is Tearing itself up from the inside out! They ignore my silent screams for the pain to let up at least one day so I can breathe. I HATE that I am stuck in this job I have because my husband is too afraid I won't find a job that will be as understanding as this job is...BUT IT IS DEAD END and I can't help my family out of this Financial Crisis in this DEAD END JOB! I know I am by no means ever to stay in the cycle of where I am...sometimes...It just gets frustrating! Roblyn I've had a bad week too. So lethargic, cortisone injection has just worn off, house is a mess, depression has hit, flare up starting. But I thank all the stars above that I live in the UK and don't have to pay for medication, that must be so bad if you live on a tight budget, it doesn't seem fair. And yes, stress does make it worse and is why I gave up work 10 years ago. Again, our national health system helps and I have an early retirement (through ill health) pension. It makes me humble to hear how hard some of you have got it. The disease is bad enough, without all the others stresses. Keep your head up and try to keep smiling. My thoughts are with you. Dawn
I have some good news and some bad news... The bad news first, we all feel pretty much the same way and we don't really have a solution to end the multitude of problems that RA brings... Now the good news, we all feel pretty much the same way and don't really have a solution to end the multitude of problems that RA brings...but then we come here and we realize we are not alone and that others just like us are getting by every day and living their lives and even finding alot of things to be joyful about. Keep coming back here, consider this part of your therapy...This really works, it doesnt hurt or have any nasty side effects, you can take a small dose or a large one, and you dont have pay extra, get a perscription or leave the comforts of home to get it! Welcome Back
It always great we are...but your right...we aren't alone in this...and that brightens my day. Roblyn That is why this is such a great place...I guess it is like group therapy
It makes me feel better about things when I read what somebody else is going through and I can relate to it; it also makes me happy to hear about the triumphs that members have. I think it gives me hope when I am having a bad day---I know that the next day, something good can happen for me! I am relatively new, just found this site after many years away from it. I have forgotten my old screen name, must be the RA or the pain meds huh? I just wanted to reply to say, I know how it feels and I too go through the same and for some odd reason your post made me feel better. I could cry with you because the similarities are so vivid, the pain so restricting, the misunderstanding of this disease so ridiculously real. So many times I have wanted to give up, so many times I wanted to just walk away from my body. I dread a storm coming, can tell without the weather report if there will be rain, and am able in all accuracy pinpoint snow fall, and high winds. I too hate the lethargic days, hate that my daughter has to endure me like this, hate that she had to grow up this way. I also hate that my life is so controlled by this disease, hate what it is doing to me inside and out, hate that meds are so expensive for those who choose to use them, and I really hate it when people cannot take their medications due to finances and more health care restrictions are plummeted on our society each day. It is really nice to know, though, that I am not alone in a world that isolates some of us. badbones from RA This is a good thread. It sure helps me to know I am not alone. Yesterday I had a cry baby day because my husband gave me the news he might have to leave for work for a couple months. Here I am crying and I have just myself and two dogs and three cats
I wrote my boss a letter asking for another medical leave of absence. I work as a ranger with a union and everything has to go through the proper channels. He wrote me back and said "I will think about it and look into the alternatives and get back to you". If I lose my job too to RA I am going to be devastated. I keep telling everyone I know that it takes time to get stable and get your life back after RA diagnosis. I was diagnosed last May. Now I am even having a hard time believing it myself when I say it. Thank God for this board and you guys. I dump so much on here but it helps to not obsess about what has changed and the what ifs. I let it out here and then try to get on with my life the best I can. Thanks you guys. AMEN to everyone's post...Are we all related?...LOL. Waddles, it does feel like we could all be related. I always look forward to getting together with my Grandma, aunts, mom and sister because when we do, we sit up untill 3am drinking coffee and talking and laughing. That is how I feel when I get on this board. Even though yall may not be online at the same time as me it is just all of the sharing and story telling that I enjoy so much. We tell each other things here that we don't tell other people b/c other people wouldnt understand. I really feel that if we all were face to face, we would still talk as openly as we do here. It is not the anonimity of the internet that brings us together, it is having a group of people that do not doubt or judge each other. That is how I feel about my family, and yall are my RA Family!
AWWW Crunchy....What a wonderful thing to say.
I have the same relationship with my family members, so I know just how you feel and how right you are about how we feel free to come to the OPEN INTERNET and AI, use this board to let it all hang out and not worry about anything. Becoming friends with people, who are going through all the same ups and downs as we go through...is a plus... few people ever get to share all the camaraderie with such wonderful people, as we do. Barb I am on enbrel and arava to keep arthur at bay and naxporin for pain I only take the naxporin now when I am having a flare up. Otherwise that is it. I take a good multivitamin, trying to eat good, and am now getting back into physical exercise, not aerobics, but like walking, yoga, swimming and am going to get the old bike out too. I am going to start working with horses again this summer but that I will take slow and easy, I am not going to be an idiot and get on a dink horse that will decide to throw me. xoxoxo memePrecious Sister Roxy ... Ooooh dear one
I hope you get that day to breathe, to maybe soak in a hot tub and take
a nap. Find a small refuge in the little things that make daily
life more bearable. I have been going to the hot tub at my
parents house almost daily to get relief. It is the one time of
day I can always count on feeling halfway decent.
It is very hard to express your pain when people don't realize how
serious it is. I always feel like people think I am a malingerer,
so I don't say much at all. I hope you get some relief and
peace of mind soon. I wish I had some employment suggestions for
you. Perhaps you could find a side way of making money, like on
ebay. I know some women that do that and supplement their incomes
nicely. I have always thought if I get too desperate, I will do
that.
My heart goes out to you and hope that tomorrow is a better day for you.
Wow! Sweetie, YOU have just *vented* for BOTH of us ...
THANK YOU! You have expressed your feelings and they are the very same feeligs that I have been having MYSELF!
It seems to make this *journey* worse, when folks just LOOK at us and say things such as "Oooooh or ahhhhh!"
and just shake their heads. Thing is, MOST folks that say this, have NO IDEA what kind of suffering that we ARE going through! I believe they ALL truly mean well but just have no idea! I have always been someone that HATES pity! Until NOW, I have NEVER allowed folks to know about my pain. (this board is a blessing!)
It is sooo wonderful to have a place to come to and simply say ... I AM HURTING!
Mentally, physically AND even spiritually at times.
(God help us!)
{{{{I HEAR YOUR HEART}}}}} and, you are not alone ...
We are all in this together and we all can relate!
You are loved dear one!
Barb
PLEASE tell us more! Is "Orencia" the generic form?
Is it by Prescription?
Thanks for your post!
Hi Meme!
Thank you so much for your support when I first posted here.
You are such an inspiration!
Please tell me (us) what meds have helped YOU.
Thanks so much!
Barb
I so understand - My husband wants to change jobs also. (he NEEDS TO soooo bad!)
We TOO are locked in because of ME!
Roxy, my heart HURTS because of the way my husband is treated at work and there's nothing at this time that we can do about it.
Yes, you are sooo right, Arthritis IS expensive.
I feel sooo bad for the folks that don't have insurance and how they suffer. We can only imagine their suffering-by the way that WE suffer WITH insurance.
As far as yor husband having to leave for awhile - just find peace in knowing dear sister, things NEVER remain the same - they change!
Just enjoy your little pets and continue taking one day at a time and soon, your situation WILL change.
THAT's what also keeps ME going!
Thanks for your support when I first posted here.
I am on my way out the door for my SECOND appt. to this rd. I'll let you know what I find out today.
Please try and *make* yourself have a good day amnd think on the *good* things that God is doing TODAY!
{{{{hugs! }}}}} Barbwillwin2,
I totally agree with "crunchy". What wise words!
I feel all the same things you do. I am having a bad week as well and feeling really crappy! I felt good for one day last week. I told myself, I totally forgot how it felt to "feel good". I tend to stay home alot and not want to be around people. I don't like to talk to people about RA cause even if I try explaining what it is, they are just plain ignorant!!!
It's a nice comfort to talk on this site and to share with other how I feel.
Luckily, my husband is supportive and I don't need to work so finances is not an issue with us. But I was feeling sorry for myself the other day and then I tried to think about what I needed to be thankful for.
Thank you for listening and letting me vent as well!
I hope everyone will be feeling better....: )Gosh what a luxury it would be if I didnt have to work! I was a stay at home mom for about 3 years and I just couldnt sit still. I decided I wanted a career, went to school, got a job, got in debt, and now it is like a ball and chain. I dont think I will be free of it untill my kids finish college. Seeing as how my baby is now in kindergarten, Ive got a llllooonnngggg way to go. Boy, who ever said hindsight is 20/20 sure knew what they were talking about!
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