I a new girl here and have been nervous about my first post. Last night while lying in bed in awful pain, I started thinking about life in general. When I was finally diagnosed last November after three years of suffering, I had the "I am not going to let this disease ruin my life" outlook. Since then, everything has changed. I have not seen any improvements with Humira, methotrexate and prendisone. My question is, how do I go back? Back to when I had hope? I am turning into someone I don't like very much anymore. I'm angry it took so long to finally get diagnosed when I knew all along what my trouble was...RA and AS. (My grandfather on my father's side had RA and was in a wheelchair by his 50's. ) Then on the other hand I get so upset and sad....I am going through a whirlwind of emotions right now that even I don't understand.
I guess I need some words of encouragement. My husband is very patient but will never truly understand what I am going through....(thank god for him)
Thank you for letting me vent....I needed it.
Hi Kateri,
I'm sorry you're going through this. I know how difficult it is when medications don't work and things look hopeless. I'm in a bit of the same boat you are, can't stop thinking of the person I was such a short time ago. All I can say is this is a good place for support, keep venting as much as you need. It has to get better, I tell my self that every day. I try to be positive even when a different part of my body goes wrong.
I went to the zoo yesterday and walked for 2 hours because I'm so damn tired of not being able to. I've been paying for it since I got home. And most of the animals were sleeping! They didn't even have the courtesy of waking up for me LOL. Anyway, I hope you feel better today. And do join in. There really are many caring, compassionate people here.
Welcome to AI Elaine. I'm glad you decided to post. Sometimes it's very helpful to hear that you are not alone and that what you are feeling is so normal. We've all been there and back many times.
I was dx'ed with RA 13 years ago and for the most part I manage really well physically and mentally but there are times where I too get down and basically feel sorry for myself. Sometimes it's hard to shake....but it's very important that you fight that off. It will only hold you back.
Just being dx'ed is really hard. Probable the hardest time you will face. It takes time to accept the changes you know are before you. Give yourself a little time. Try not to be so hard on yourself. Your life is far from over and working on a good, positive attitide and out look on life will be very important. Controlling your feelings takes time and it won't happen over night.
I'm glad you're here. Keep coming back. You'll soon learn you are not alone.
Again; Welcome.
Hi Elaine- I am glad you have posted on AI .Sorry you havent had much luck with meds but please dont give up hope.These feelings are natural with RA as are the good days and the bad.I have been throught lots of meds and am currently on Humira with no improvement but I will keep on trying.Ihave had RA for so long now that life without it would be strange.Its about adapting to different things and being kind to yourself.My husband like yours is very patient and understanding but he admits he cant imagine what the pain and fatigue is like, so its great that we have AI to come on to and talk to others who do understand Hopefuly you will some medicine or combination of meds to help you cope.
To get to a place again where you have hope is about being positive(and i know how hard that is).
Take care and look forward to seeing you on here again
I feel just like you! Was dx'd with Crohns first about 2 years ago then a year and half ago with RA and now my docs are talking about possible AS as well! All of these run in my family along with some others. I feel exactly the same as you! I try to stay so positive as I think that it really does help but sometimes it is so hard. Feels like absolutly everything is falling apart! Some days can be frustrating when it feels like this is neverending. And trying to find the right combo of meds that are effective is really difficult as everything for joints muscles are bad for crohns! Ah....
How are old you if you don't mind? I'm 25....
8 years after my initial diagnosis of RA I'm still hoping. The one aspect of this disease that keeps me going is there are people who are in worse shape than than I am and they function on a daily basis. Some are still working fulltime and have children and husbands to care for. I don't know how they do it. I refuse to allow myself the luxury of a pity party longer than 24 hours. I set an hour limit on my pity parties and it works for me.
The frustration with the disease will never go away because as soon as one thing is under control, another is out of control. One diagnosis leads to another. Just when the cocktail of drugs begin to work and you're hopeful, and starting to do things that you haven't done in years, they quit working.
I've adapted to the diseases and the most important piece of advice that I can share with you is....do not allow the disease to define you. You are not the disease. You are still Elaine, who just happens to have RA. Your dreams, aspirations, and goals shouldn't change. You may have to modify them but don't stop dreaming and reaching for your goals. If you do, then the disease will have won. Lindy
Anyway, just know that we all get down from this disease sometimes and it's very normal. Maintaining that positive, never-say-die attitude takes work but you'll get there also. Good Luck!
Hi Kateri
Welcome to AI. Sorry the meds you have tried have not done much for you. There is 1 good thing about that - there are lots more to try. The early years are the hardest...
Kateri1077, I know what you are going threw myself. I have been on so many things I can not count and you know what I am still not better. I am in allot of pain and sometimes I cannot stand it so I know how you feel my heart goes out to you. My husband is understanding but has no clue what I am going threw some days I do not want to even talk to him cuss some times all I want to do is cry and I don't want him to feel sorry for me I just want him to understand that I am hurting so bad and if I am not talking it's because I feel so terrible and I don't want him to worry because there is not a thing he can do. This is my bruden to carry myself not his. And I'll tell you it's been really bad for me lately. I keep thinking someday things might get better but it doesn't look like it will . I want some relief from pain and to just sleep one night all night. I toss and turn all night long. My hands, feet, knees, wrist fingers hurt very bad so I feel for you if you been on meds and they are not helping. God Bless you and I hope you get better real soon. JoanElaine, I am so sorry that you are suffering so much right now. Bless your heart, it really is difficult when you are first diagnosed. I know that at times I was glad to have a definite diagnosis, but scared when I realized how much my life was changing.
I am a lot older than you and have had pain in my bones for most of my life. I am now on Plaquenil for RA. That is the only RA drug I am on at the moment, but I also have a wonderful pain management specialist who makes sure that my pain problems are addressed.
It takes a while, but eventually you will become more accepting of your limitations and just find different ways of doing things. Or new things that may interest you.
Sometimes I feel like the only thing I have to talk about is my health, doctors, meds. Just keeping track of my appointments and meds is a full time job some times. But I try to find other things to do or read; just anything to keep me from being obsessed with my health problems. Remember, you still have a life and are still the same person you always were, you just have some new challenges.
Your emotions are going to be all over the place for a while, as you adjust to things. Has your doctor recommended an anti-depressant for you? It is not unusual for people with a chronic illness to become depressed because of their health problems. I have been on anti-depressants for many years, and I think you will find that many of the others here are also.
Welcome to the board. We are always here if you need someone to talk to, or just want to chat.
Hope you are feeling better very soon!
Gentle hugs,
Nini
Dear Elaine , WELCOME!! Honestly, I don't know why these meds take so long to work....but I hope they do. it is that waiting period that is so hard, even if what you are taking doesn't give you 'instant' relief I think they will be attacking the disease!? Can you call your doctor's office and tell them how you feel? Will they listen? Sometimes they adjust the amount of the drugs...I've changed doses about every week for 4 months! Finally, after increasing everything (Remicade went up 3 times the original! and MTX 3 times) ....it's all a shell game. Guessing what's best for our bodies is the key here. I hope your meds 'kick in' soon , please let us all know how your are.....we've been there. Never suffer in silence we are here! SarahHey Elaine...
Hi Elaine!
Welcome! You are NOT alone. I haven't been going through this for very long, had a very active life and go through times of not dealing with my "new life" very well. Fortunately, eventually I have been able to snap back into a more positive attitide now and again. It's hard. It's okay to be sad, pissed, etc. because you have lost a part of your life. The good news, your life can still be wonderful. It just takes work to change your attitude and find things that you can do, and not just think of things you can not do. Easily said, hard to do.
I think once you find a cocktail of drugs that make you feel better physically, mentally you'll be more positive.
Hang in there....and vent all you want. We're all in the same boat and there are people here that have been going through this for a long time that have some great ideas.
Hi Kateri, welcome. I thought you might like to read a thread I started last night. Look for the topic acceptance. We are all going through your struggle with this fickle disease. Most of us were control freaks and what a challenge to face being "out of control" everyday. Keep connected here, they have helped me many times, RainHi Elaine and welcome to AI. Oh hunny we all struggle this fickle ridiculous disease and you are not alone with that.
Vent all you want. That is what we are here for. We all have at one point or another and probably will again too.
Take your time working thru everything you are going thru. Do it at your own pace. One step at a time. My experience with working thru all of this is that one morning I got up and it was like a light bulb went on in my brain and a weight was lifted off of my shoulders. It will happen to you too.