I feel like I am a different person lately. My perception of feeling good has changed, I live in uncertainty, and I have new fears. On top of this, on bad days I have physical discomfort and pain that causes me to modify how I approach routine things. Is it normal to feel like you need to get to know yourself all over again? Do you think you can be the same person after diagnosis? I mean, the old me never thought of brushing her teeth has a uncomfortable task Before I was DXed I was a beuatiful African man with a wife and a pet
grooming business. Now I'm a 41 yr old white woman with a cat and a day
job! Why didn't anyone warn me?
JK, obviously. It changed my perception of myself at first but now I'm back to
who I was. I thought of myself as a healthy person who had become a sick
person. Recently I caught myself thinking of myself as a healthy person who
has RA. I was quite pleased to catch myself thinking that.
caprice, i have changed also since this disease. Its like i am in a box, and i cant think outside of it,because the box is the pain,fatiuge,stiffness. when you are in pain you cant think of anything else. Like planning events,activities. or decorating the house. because i am consumed in this box of pain fatiuge and stiffness. And than you lose who you were. Now you need to focus on getting rest,getting rid of the pain,finding energy to do the basics like get to work,pay bills,clean the house. And than we wonder why we are depressed? well due, we are in this box with no way out. we have to hope the medicine they give us finally works so we can get out of the box.sorry i guess this is depressing
kel
kel
Gimpy, that was too funny! Glad you caught yourself in a good thought. How we talk to ourselves is sooo important.
caprice, that is a good question. For me, I think the change has been mostly gradual with a few sudden shifts, but I am definitely different than I was.
First I got the fibromyalgia and for awhile it was a gradual change, and then I read a book about it, which brought home all the implications, and it was a radical shift for a month or two. Then the gradual adjustments of getting used to certain levels of pain, getting used to all the meds, thinning out my schedule to make it doable, changing or letting go of certain activities, educating those around me, accepting that my patience and memory are not what they were.
When the RA came along years later, there was another radical shift because 1) it never occurred to me that I'd have a second major, chronic, auto-immune condition to deal with, and 2) this one has the potential for real damage. Now I am back to the gradual change and acceptance for the most part, but I am eager to get the RA under control.
I think having these conditions has made me less patient and more sensitive. I make fewer assumptions about other people, because of the invisible nature of our disease. I am still learning to get comfortable saying I need help or that I can't do certain things, but I'm getting lots better at it. I have become more grateful for little things. Part of me is the same, and part of me is different.
And I'm getting used to reminding my dental hygienist that it hurts my forearm and hand to brush my teeth so to please be understanding about it if I didn't do a 100% good job. I'm pretty much the same as Gimpy-a-gogo. In the beginning, I didn't think of myself as the same person...so many things had changed. But now after having this for over 15 years. Even though I still have my struggles with pain, swelling, fatigue..etc...I'm still the same person...I just happen to have RA.One of the symptoms of RA is depression, so maybe once you get the
disease more under control you'll be less depressed. My depression went
away after about 6 weeks of AP. I am glad it's gone. In my opinion, the
depression and fatigue are the worst parts of this affliction.
Sure I have changed. Sometimes it is for the better tho. I really got a good grasp of what it means to have a family and be part of a family.
Change CAN be GOOD. Sometimes it just takes awhile to get used to the changes we have to make in our lives. Believe me...I didn't get comfortable with where I am in life right now overnight.
Even though I have RA I dont think of myself as a sick person. I just had to make some minor adjustments. I have changed in the way of being more aware of germs. And I ask myself more if I am up to doing something someone asks me to do.I've never allowed RA to rule my life. I'm still the same person. I found that I've been describing my self as healthy but I do have RA.
It helps having a spouse that won't allow me to wallow. I don't have depression, so I guess I'm just a healthy person with RA.
The state may say I'm disabled but because I can't work doesn't mean I'm disabled. The crippled, blind woman who comes to the senior center everyday for lunch doesn't consider herself disabled. Why should I?
I'm just me - mom, wife, friend, helper. RA/PA/OA doesn't define who I am. Lindy
Lindy's post moved me....I really wish I could feel more like that.
Unfortunately, even after having RA for years and finally getting a diagnosis 3 years ago....I'm still not dealing with it well. Perhaps that's because my RA has never been in control. I do feel like a different person. I'm angry, depressed, I hurt, I'm exhausted beyond belief, I'm lost and I'm afraid. I sincerely feel like this disease has stolen my life from me, left me spinning out of control and I cannot seem to find my balance. It's really knocked me to my knees.
I miss me, I miss my life. I miss all the things that I used to love that I can't do. The good part is...I've learned to appreciate the little things, not take things for granted and be more compassionate and understanding toward others.
Am I the same person since my DX? No, not completely but I certainly hope to find the part I've lost again someday.
Peace & Love...Neasy
GoGo - too funny!
Gramma - I have to say I agree with you wholeheartedly.
When I was first diagnosed I was furiously angry - I'd done nothing to 'deserve' this. I was a good person; didn't beat the kid or kick the dog! God had thrown one ugly curveball at me already with my stroke/adverse medical reaction and I'd already lost 10 years of my life, there was no way some idiot with a crumpled labcoat was going to tell me my life was over. There had to be another way!
And I researched to see what would work in my life. Diet? I would have done anything to get my life back.
When I found AP I about as frightened as I could be; wondering if I was losing my only chance to stop joint erosions. Nobody to talk with because nobody near me was jumping into the abyss on a hope and a prayer. By the time I said 'screw this' and booked a flight out of state to get help, 5 docs told me AP wasn't going to work.
Then I start AP and get almost the worst depression of my life. The hopelessness was unbelievable and lasted 7 1/2 weeks. Most people say the depression and fatigue are the first to leave - but not for me - of course. I hit rock bottom and without my husband I don't know if I would have made it. Sure, there are moments of wonder when I can open a gallon of milk for the first time...but...it was bad.
Now, coming out the other side, I feel like a 'new person'. This disease, bizarrely, was a gift from God. Never again will I not strive to do all that I can. I resurrected my '100 things to do while I'm still alive' list and am working on updating it. I'm giving my dreams a 'last shot'. I'm grateful for my family. For dancing with my little girl! For stars on cool summer night! I am going to live life to it's fullest until I can't boogie, oogie, oogie anymore! Or until I get hit by a bus. Which ever comes first.
So, Caprice, Neasy and anybody else rueing the changes in their lives this disease has wrought - the only thing I could do when I got so sick so fast was surf the net. Read. Research. Find something that will work for you. Grab somebody's hand and reach out. Have them help you help yourself. Anybody here will help! All you have to do is figure out what your body needs. It can be any of the meds or any lifestyle change. But it can be done!
You will find yourself again. A better, stronger person you always knew you could be.
Pip
P.S. I hope this makes sense.
Pip....that was a great post, loved it, love your attitude. Thanks.
Linda
Pip...you always make sense & I adore you.
I have no doubt I will find my way...I'm just not sure how yet.
This was a hard thread for me because I knew I would be letting things out that I try very hard to keep bottled up and tucked away. I almost didn't post because I knew letting it out would make me emotional. My post might not of been too pretty but it sure did feel good to just let go.
Peace & Love...Neasy
I didn't see or not see pretty - I saw 'loss'. Just wanted you to know you'll find you. Sometimes just knowing will help.
Pip
Neasy, I don't want you to think that it's all been a bed of roses for me. I had a period of time when RA knocked me down both physically and mentally. But I rearranged my life and my thoughts, my dreams, my aspirations, and made a new priority list.
Like Pip, I'm working on a revised list of 100 things I want to do before I die and I'm surprised at the number of items that I've checked off. Once I have my new knees I'm going to check off a few more.
This disease for me is an adventure....I have to keep reorganizing and changing my life to fit and it adds a bit of adventure to my lifestyle.
I still have moments when I'm frustrated, cry and am angry but those moments don't last long. They're normal and I think that's one of the secrets....allow yourself those down times but put a time limit on them. My time limit is 24 hours. After 24 hours it's back to life and all it's joys. I've lived three quarters of my life and I don't have a lot of time left to be depressed, angry, and frustrated. When you're in your 60's the perspectives are all a little different. It's hard to explain but I hope that you understand. Lindy
OMG Gimpy...I laughed so hard at what you said, i think i got a dirty look from hubby like "what in the world are you laughing at" THank youPip & Lindy....thank you!
Bedtime for me...Have a great night all.
Peace & Love...Neasy
Thank you all for your responses. I just needed to know I wasn't crazy or something. My mother feels I should just suck it up and move through. Then there are friends who feel like it will be over soon. I used to love to play with my niece and nephew, and now sometimes they want me to hug them and pick them up and it hurts to do so. Other times I don't have the energy to play with them. I am single and I don't see how I could even date in this condition. I know things can and will get better. I think eventually I will stop feeling like I am watching this happen to someone else. On the bright side, I got to do low impact aerobics this week. So things are looking up. I hate that MTX makes me so tired the 24 hours after I take it, but it is starting to give me my life back.RA has changed me, but so much of it is for the better. It has made me more determined and, funnily enough, less of a control freak! I had to make a conscious decision not to let RA define me - It's a bit like living with a really annoying brother or sister, who constantly wants to tag along with whatever I'm doing and trying to stop me from doing it. I've become more focused about what I want from life and how I'm going to achieve it and much better at standing up for myself.
I guess RA taught me that if I don't fight my battles, no one else will. I've had some very rough times and it took some very stern words from my family to help me through those. I almost consider myself lucky in that I had severe depresson when I was younger and learning to cope with that, fighting back against that prepared me for having RA. I don't think I would have survived those few months after diagnosis if I hadn't already been through a serious, debilitating illness and the therapies that went with it.
Caprice - you're not crazy! Congrats on the aerobics class!
Caprice,I guess what I am hearing from the group to give yourself and myself some time to grow and get used to this disease. I guess it is like what I tell my kids at school if you are trying something new on, it may not fit right away, but you will get used to it in your own way.
I am recently diagnosed as well, so I feel a lot like Neasy, and some days I feel better. I wish the disease was under control, so I can do more and be more like me. There is always an adjustment time and this is it for me. I do not want this disease to leave me angry and bitter for a long time. I want to have my sense of humor and see the good in everyday life, because good still happens.
Take care of you,
Of course having a chronic disease of any sort changes your life. But so does every personal realtionship good or bad, every job, every birth every death. Your entire life is filled with encounters and events that affect you. The issue comes down to HOW it affects you.
And that is something that each of us can choose. We may not be able to change all the physical aspects but emotionally it is 100% up to us. For me the first step to taking control was to control how I let the diesease affect my phsyche.
How did RA change me...it empowered me, it forced me to make decisions that I would otherwise avoid,, I don't sweat the small stuff and I learned not to let what others think influence what I need to do for me. Its a choice..lemons or lemonade
This is just beautiful -
One we understand what is happening to us we can and do figure out how to take command of our lives back!
Pip
P.S Caprice, if I remember once you posted that diet was something that interested you. On the IPRS there is a new 'healthy' section. The woman posting the most is Patricia and she's the woman that completely controls her PRA with diet and natural herbs etc. The site is supposed to be for PRA peeps - but nothing says you guys can't at least read. Or post and see is somebody complains. :-)
It takes TIME for each individual to process the enormous amount of emotions we go thru having this disease. The best thing we can and the people in our lives can do is to let us prrocess everything in our own way in our own time.
Yes, people will tell you drink this juice it will cure you. Or eat this food it will cure you. Or you don't go to church enuf. Or why can't you do this or that. It is up to us to explain to them why and that there is no cure and only control. If people refuse to accept us or our explanations then that is their problem. I know who I am and that stands for itself.
Go Grammaskittles!!! Love your last paragraph...absolutely correct. My journey with this disease has been standing solidly as who I am, knowing who I am and standing up for myself in a new way.I not only have RA, but multiple chemical sensitivity which is a cause of my RA (rare disorder).
Before I got sick, my husband and daughter and I would go places. We would travel to other towns every weekend, hit the restaurants and have tons of fun.
We shopped daily, spent lots of times out of the house just having a great time.
Since I have been sick, I am very close the same person around everyone with laughter etc. because that is something I "have" to do to help keep family moral up.
But, on the inside I am crying. I am disabled now, having to use canes and crutches (i use crutches instead of walker as i can fit in areas better, just have to be careful as I fall sometimes).
It is extremely hard. I want to cry because i can't take regular RA meds due to their toxicity in my body, I basicly get 100 times worse. It leaves me with no doctor because she dropped me since she can't seem to help me.
I am scared, hurting and crying a lot. I spend all my time in the same room as traveling from one to another hurts.
It's hard. I am thankful my family doesn't stop their living and have great time with me. I am not ruining their lives and that is wonderful.
God bless you all, even the smallest RA can effect everyone on such a large scale.
Living life with a chronic disease is to travel a road that goes up and downhill. There are smooth paths but there are also areas where obstacles slow us down or block our way. When the road is easy, we forget how difficult it had been for us. When we're stymied by those roadblocks, we wonder how we'll ever keep going. But somehow we do. And we do it again and again.
Reading all your posts is a testament to the courage that you have facing each day, each roadblock, each uphill battle, and each rock in the road. I saw that many of you were diagnosed in the past year or two..or months.
Can I reassure you that it does get easier? I've been diagnosed for over 7 years and have been on good meds for 6 of those years. I can truly say that I am able to work full-time, take care of the house (with some help from hubby), and pick up my two grandchildren. But there were times when I worried that I would not be able to do any of those things.
God bless each and every one of you, too!
These posts are very encouraging. Thanks.
First let me say wow... these posts have been so moving!!! I am very newly diagnosed. First, I felt genuine relief. I was beginning to think I was mental and all the pain was in my head. Then came the overwhelming fear... can I die from this? will I be in a wheelchair? will my hands end up deformed like my grandma? will my husband leave me? But I have chosen to be empowered. I used my computer to become informed and educated and to find the support of people like you. I changed my diet, which for me has helped if only that I have lost weight. I have embraced the medicines with a positive outlook because I truly believe that my mental state can influence the effectiveness of these drugs. Yes, I am scared of the day they may not work.
Is life what it was before? No. Am I pain free? Somedays are better than others. I have a different normal than I had before. I am in someways living so much healthier than I was before I was diagnosed. But just like all of you there are days I want to curl up and cry. But thankfully I am married to a retired military man whose motto is "use it or lose it" and he refuses to let me wallow.
Thank you all for sharing yourselves with me and everyone else here!!! Now I think we need a group hug
Connie
Connie,
Right back at you! When you called your life a "different normal" I think that was a great way to put it. Because things are never going to be the same. But we can choose our response to the situation that is in front of us. Yes, it is very hard indeed not to feel sad or down when pain and fatigue have us in their grip. But just to recognize that we will get past that moment...that rough spot...and get to that place where the RA takes a back seat. When I am distracted from the symptoms, I find it much easier to cope. A good book...a visit with a friend...playing with a child...
Group hug accepted and reciprocated!
So does having a baby, geting married, realizing a dream, learning to drive, travel, losing a loved one.
It's how we CHOOSE to deal with these changes that is important, not the fact of the changes. Life is all about change.
I made a decision way back 100 years ago when I was 20 (feels like it) that I was going to stop being negative, pessimistic and cynical. I CHOSE to change into an optimistic person. Yes I have had to deal with serious health issues, the deaths of 2 daughters, the loss of a love.
There are times when we all need to go lock ourselves in a room and just cry and rail at the gods for our lot in life. so do that. wallow for a little while, then wipe your tears and go out and do something anything nice for someone else. that will make you feel wonderful, and like your old self.
Great post KathyI thought this might be helpful to all...maybe I should post it separately as well.