Hello. I'm a recent victim of the cruddy RA diagnosis. My name is Melanie, and I am a 28-yr old married mother of two sons, ages 6ys and 4mos. My husband is the most amazing, wonderful, incredible man on the planet... just in case you were wondering.
When the doctor first told me I had rheumatoid arthritis, I just sat there and stared at him. The first thought that went through my mind was of a book I read when I was younger. It was about a boy who had RA before anyone really knew what it was. It talked about how some days he couldn't walk, use his hands, get out of bed, etc. The townspeople also thought whatever he had was contagios. Subsequently, he spent a lot of time by the river alone because no one wanted to be near him and his gnarly hands. This being the extent of my RA knowledge, I just sat there in shock.
Of course my doctor explained the basics of the disease to me and the fact there is no cure. He gave me a lovely informational pamplet and an Rx for prednisone and MTX. Nothing really sank in until I did my own research on the internet. Then I just cried.
Things are getting better now. I guess. I hurt, I'm inflammed, I'm tired, blah, blah, blah. Ya'll know the drill. Hahaha! Anyways...
My questions is this: How do I explain this disease to other people? The "arthritis" part is completely misleading. When people ask my husband why he is tired and he replies he had to take care of the baby last night, they immediately want to know why I couldn't do it. They know what I have because he's had to miss work because of me, but they don't understand everything that comes with this disease. I also get people who say, "oh I have arthritis in my hands, too" after they learn of my diagnosis. They just don't get it!!
Maybe they should call it, "Death by auto-immune rheumatoid disease" instead.
Thanks for any help you can provide. I really appreciate it.
One Frustrated ColoRADo chick,
Melanie
Hi, Melanie and welcome to your Home away from HOME. These ladies on this sight are wonderful and reassuring even though they have been through the worst of it like all of us. We are in this thing together.
I understand your question, and there is so many myths about what RA is or PsA(which is what I have, it is in the same family). I was talking to a very dear friend of mine and she said, oh so your hands hurt and they are curling up a bit. Hmmm! I did educate her, because she has been a friend since High school, but if they are not important to me do I really care??? I guess for me it takes so much energy to keep up with my life that if they are not close to me they can think what they may. The only thing that hurts is when someone very close to you says, "suck it up and deal with it everyone has to live their life now just deal with the pain and go on." Which happened to me on Thursday night.
Hi there Melanie. I am so sorry this darn disease got you too but there are some wonderful people on here to help you through the bad times and laugh through the good. Your little ones are so young and that must be hard for you as motherhood involves so much running around and energy ( mine are 13, 16 and 19) my youngest was 2 1/2 when i was diagnosed) .Your husband sounds like a wonderful man and thats great, my hubby is a godsend to me.
For a great explanation to friends and family etc there is a website www.Butyoudontlooksick.com and read the spoon story, it explains so much.
Good luck with everything.
Hope to see you posting again
I know the feeling. It was a shock for me too. Just a few words of encouragement. There's no guarantee, but for me, the first year was by far the worse. Now, 5 years later, I feel much, much better. It took a while to find meds that worked, MTX and now Humira, but they do work extremely well. Hopefully, you will quickly find a treatment plan that will allow you a normal life. It's never perfect but modern meds can work wonders.
Good luck, Alan
Hey Melanie!! I'm new to RA too. I'm a bit older than you. My youngest is 15. You have struggles that I haven't had. But please don't feel like you've been handed a death sentence. You'll figure out a way that works, and I bet if you think about it, you always have in the past when something has seemed too difficult. You're young and smart and have a great husband! Everything will be ok.
Linda
Hi Melanie,Thank you so much for the encouragement and words of wisdom. This is by far the best support group on the web I have found. I hate that this disease is what ties us together, but appreciate all of you who are willing to share. Thank you, thank you, thank you!!
Pin Cushion - I read the spoon story immediately and shared it with my husband as well. He had a look of realization and said, "Oh, wow..." He has been very understanding and supportive, but I think this story really hit home for him. I'm sure it will work well for those who ask, too. Thank you so much!
Hi Melanie and welcome!! Sorry that you did have find us...but there are many wonderful people here that will be there for you to help you thru all of this!
Hi Melanie & Welcome!! Hi Melanie,
Welcome to your newest best friends list. You will find compassion, help, support, wisdom, laughter, and much more here.
Visit often.
Pam
Hi Melanie, so sorry you have this terrible disease but at least you came to the right place to get advice and encouragement. I hope you find the right meds soon to get you feeling better.
take care
dear Melanie, You are so welcome to the group and I'm excited about reading your posts. Love to hear about your children and what it is like to 'keep up with the little ones', we had one grand daughter and babysat her all summer for 12 years. (well she wnt home to her parents in the evenings! except when she insisted on coming back for dinner!) Oh my gosh it took my husband AND I to follow tht little girl around. A normal day was like summer camp....she never sat down! We loved it to death and now she's 16 and doesn't 'need' us any more. that's kids.
I wrote you a real long well composed note about 'not trying to explain to people who don't have this 'yukky chronic disease' and what it is like for those of us to have it, but some how it got lost when I tried to post it?!! That seems to be my life lately....anyway we are here 24/7 as most of us hardly sleep (one of our burdens to bare), I open my forum page before my emails!, .
I'd say people who don't have this stuff can't possibly understand, the dumb stiffness, the pain for no 'reason', the weird drugs (a bit of the cancer teatment some of us get, antibiotics for others, mobics, the list is endless , and Oh, Prednisone a steroid!) We don't looooook sick! we hear over and over....'you look so good , they say' , hummmm. Sometimes someone needs to open our jars, open car doors, drive us places, get the groceries, it is endless.
I've had this for 15 years and I didn't understand how awful it could get until 3 months ago, after a heart operation, my arthritis went ballistics. It has been a roller coaster of meds (some didn't work), doc's apptments, 3 hour infusions (IV's) of the powerful drug Remicade....which I'd never heard of before. And endless waiting for relief from finger and feet stiffness, pain and swelling.
However, I inherited this disease and watched the pain an suffering of my grandmother. I am grateful for the new meds we all have available, and medicare which pays 00 a month! to treat me! Yes 00! We are the lucky ones to have so much help.
I know you will be treated and do well with this dumb disease, it takes courage to sort it all out but we work at it every day.
Sorry this got so long, take care, Lynda
Thank you for all the welcomes and well wishes! This is so great - the bonding experience, not the disease.
Lynda - my older son (6) knows that I hurt and understands for the most part when Momma needs to rest. The youngin (5 mos) though, ugh. That's a whole other story! I feel so guilty when I can't pick him up as often as I like and it's very disheartening when even the simplest task like changing a diaper is a chore because I cannot work the snaps on his onesies. I know he has no way of comprehending why Momma is so slow. (sigh) I also feel guilty sometimes because my husband will work a full day and then come home and have to take care of the baby because I've used all my spoons (REALLY liked that story!) It's so unfair! Hopefully it will get better soon though as I am to start Enbrel as soon as my pharmacy receives a shipment. I'm terrified of the possible side effects and the many dangers of the drug, but I believe the benefits will outweigh both.
Hi Melanie -
I too struggled with PRA and a 5 year old when I was diagnosed. It does get better!
Cordelia
You said "There is a serious lack of ignorance about RA and people don't understand always". I beg to disagree - there is a heck of a lot of ignorance out there about RA.
Pip Hi and welcome. There are several of us with small kids on the forum. I am a 54 year old gramma raising our 2 grand kids. Ally is just 5 and Jake is 21 months. Your hubby is a keeper!! when people ask why HE was up with the baby just say "well naturally he was up..hes a parent too!!" I know how hard the onesies are lol. Jake fights getting his diaper changed too. and I just dont have the strength in my hands so a lot of his diapers are kinda droopy. while the baby is small. ty to spend as much time as you can with him in your bed. you can talk to him, read to her nurse him there. just cutting down on the amount of moving around and lifting can help. If you have questions come ask. there is a lot of experience here. Melanie....I sure hope the enbrel works for you, it made my life livable again. Let us know when you start it, k? Linda Hi & welcome to AI How to explain RA....hmmmm. That's a tough one. Personally I think they should take arthritis out of it and just call it Rheumatoid Disease. People hear arthritis but the never hear or begin to comprehend Rheumatoid. I tell people I have an auto immune disease and that my body attacks itself. They still don't quite get it but I have found that I don't hear as much of the "oh I have arthritis, you just need to take advil and keep moving". I also love the Spoon theory and have shared that with those closest to me. I find that although they will never completely understand, it does help quite a bit. Good luck to you on your journey and remember that we do know what you're going through and we are here for you. Peace & Love...Neasy Things get easier once people learn about it and make sure you do tell everyone who concerned. By letting everyone know, it will be far easier on you. They will be aware that you could get worse, they will become more helpful or distant (best to know now) and you one day will not have to tell anyone anymore what you have which is nice. I do have the occasional person over 50 in the store asking why someone so young is using a cane or walker, but i just tell them i have RA and they do the rest of the talking about how i am too young to be sick lol. I am very very very very very happy you have a great husband. I don't have young children, but have a rare chemical problem so i can't take regular meds for RA. So basicly i am stuck in chairs or bed most of my time unless one good day each month comes along. My husband is a god sent person. He cooks, cleans, runs the family business, takes care of our daughter etc. and never EVER complains, not even once and I am into my cripled 3rd year now (starting August). It's scarry, but the drugs today to work on most people and before you know it, you will be holding that baby, changing dirty diapers etc. It's a great thing what these drugs can do for most. It just sucks that i can't use them lol. I wish you well and that a drug works perfectly on you.
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