Well, if I had to pick an autoimmune disease, in an almost sickening yet delightful way I'm glad it was RA since I'm surrounded by so many women :)....gotta look at the positives in this.
Anyway, I was reading many of the posts and I found out more information here than in other info web sites so I thought I'd introduce myself just in case my perspectives could possibly help anyone.
I was diagnosed with RA seven years ago after a bout with pnemonia prompted blood work. Of course I didn't have tome for that and went on about my life. I am now 45 years old and extremely atheltic. I have an extremely high pain threshold ( which evidently I'm going to need ). I pushed this threshold so I could play sports and deal with the repercussions after the endorphins wore off. Well, I had to give up hockey last year beacuse I could not bend my me knees afterwords and it would take the rest of the day to recover. I have two daughters 12 & 10 and 3 year old twin boys. Taking an afternoon nap is not an option. I'm the dad you see who's always wrestling or playing with his kids. A little while ago I caught myself saying no to playing with the twins just because I was so tired and hurting. I guess the fact that I couldn't fit my feet into my shoes also forced a little realization also. So I went back to my rummy, denial over.
My wonderful wife has changed my diet. More fruits, vegetables and everything else I hate. God love her, she's a big scaredy cat though. God Lover her, she's also a physical therapist which will help.
Okay that's my bio: I'm hoping to find a place to vent. Being full of male bravado I want to be strong for my family or at least give them the sense of no worries. But....I've ripped, torn or broken many bones, ligiments & cartlidges in my body. I've felt the pain of repaired joints and pinched nerves and dealt with it.
BUT this RA thing is getting the best of me. It's as if in addition to the pain the disease takes away all your ability to deal with it oh and by the way the pain is constant and it will only get worse. It doesn't help when they give you the diagnosis and it sounds like a death sentence. And for an eternally optimistic person this increasing fatugue, lethargy and depression is a ton of fun.
Thanks for letting me rant, if allowed I will do more but I'd like to ask a few questions if it's alright.
Is anyone kicking this thing without meds?
Anyone able to play any sports without taking a day to recover?
Are there any business help aids: grants, loans, assistance, etc.?
Thanks in advance:On a positive note, I whacked the snot out fo my hand with a hammer yesterday and I don't even realize the pain of it because the pains in my feet, knees, hands, spine and shoulders dwarf it by comparison.
Matt
Hello Matt Welcome
Hi Matt, welcome!
Are you being treated by your Rheumy? It's important that you start on meds that can slow down the disease's progress. You'll get lots of suggestions and tons of support from all the wonderful people here. Best wishes....
Tell me about it...let's see if this works
Hello New Guy Matt. Sucks for you that you fit in here, but then it sucks for all of us. I mean, not that YOU fit in here, but that we all fit in. Yeah, you know what I mean. I think this board is a good outlet for ranting cuz who wants to be whining to their friends and family all the time? Plus, everyone here knows what your talking about. And their are lots of super people who know tons of info, so it's great that way too. What meds are you on? Oh, and about sports..I'm just starting to run again after my diagnosis...RA hit me all suddenly and kept me down 4 months. Now my meds are in control of it and who knows, maybe I'll at least be able to run the half marathon in the fall. The first run was only a mile, but it felt very very good.
Linda
Hello Matt, newbies always welcome, it'll be good to have another man around here!Welcome to AI Matt! Glad you're here.
I've had RA for the last 13 years and I wouldn't say "I'm Kickin it" but I've been controling it fairly well the majority of the time with proper medication. It's an up and down struggle at times.....but it is doable.
Hope we see more of you here. Again, Welcome.
And we do have several men here....I'm sure they'll be happy to see you here as well. We far out number them....buy they too like it that way
You have one great thing going for you and that is a loving wife and great kids. My hubby helps me no end and its a big advantage to have the immediate family support. Even so it is a strain on the whole family and we have to come up with ways to cope.
The fatigue is the worse thing but try to pace yourself and maybe do a few quieter things with the boys that will still benefit them.
Hope to see you on here again.
Hi Matt and welcome. I have only had RA for a year, but I have learned so much here from everyone. My meds are still being adjusted and as I am a go getter, the fatigue (there has to be a better word than that to use, it is so much more) has really been the most difficult. I am getting help for that too.Hello and welcome, Matt! I'm a recent victim of good old RA and am a pretty new AI member. Make sure you get on meds ASAP. They can't cure the RA, but they can slow the booger down! As far as the fatigue portion (and I agree "fatigue" doesn't even cut it), I'm hoping it gets better once I start Enbrel. Right now I'm making do with weekly methotrexate injections, vicodin and flexeril. What a lovely cocktail, eh?
Welcome to the group!
I see the doc again in two weeks, I guess we'll see what meds I'll be taking. I lliked to hear the running stories. I would love to be able to run again. That's a source of hope.
As far as insurance goes. I'm a commercial broker as well as home & car and yes, I sell group health insurance so I feel everyone's pain as far as that goes.
Matt
Hi Matt, and welcome. You have come to the right place. Weep and laugh with us . Some great positive replies for you, and I can only endorse what the others have said. You are among friends!Hi Matt and welcome to AI!
Stay away from hammers! OUCH! LOL
Hey Matt!
Welcome to AI! First thing I noticed is the pneumonia, it's one of the biggies for those of us who believe in the "infection connection". See, there's two basic schools of thought on what happens when we get an AI disease. The big one is the 'autoimmune" that somehow your body goes wonky and starts attacking itself. Those of us into the other theory - the infection connection - believe a weakened immune system allowed a mycoplasma (in your case probably c. pneumonia) to run ramphant. These myco's are cell wall deficent and are really adept at avoiding death by your white blood cells; mainly because they co-opted them. Anyway, if you want more info please go to www.roadback.org and lurk and learn.
Either way you decide to be treated, you went a long time without meds. Please think about getting x-rays and starting some med ASAP.
You asked some questions -
Is anyone kicking this thing without meds?
I know a woman who is doing it all with natural herbs and supplements and major diet changes. She's doing great! If you want more info please PM me.
Anyone able to play any sports without taking a day to recover?
Well, I was never sports oriented but I did manage to boogie board for the first time in years and years. I've been pricing getting one too! AP has me almost to the point I was before I got sick.
Are there any business help aids: grants, loans, assistance, etc.?
Interestingly, I was seeing an ADA for an unrelated matter today and realized places like I was visiting must be all over America. There were a lot of people being helped with disability paperwork and the requisite legal stuff. These people are going to be contacting me tomorrow so I'll try and figure out what kind of umbrella organization would be able to help us. It was a Center for Independent Living.
Pip
Hi Matt & Welcome to AI
Is anyone kicking this thing without meds?
Not that I'm aware of. Heck I can't even kick it with Meds. There are a lot of options out there though. There are a lot of us here on conventional medications, some that add in homeopathic and some that go with antibiotic treatment (Pip is a good one to talk with regarding AP). Whatever you're interested in, I'm sure you will find a fountain of endless information and wonderful people to share what they know and have experienced.
Anyone able to play any sports without taking a day to recover?
Unfortunately sports of any kind are out for me...I even had to give up the occassional bowling. However, there are people here that are still very active. Lynda (Hurts) goes golfing all the time although I know there are times that she's had to cancel due to RA. It just really depends on how RA affects you and what limitations it throws your way.
Are there any business help aids: grants, loans, assistance, etc.?
I'm not really sure about grants and loans. The only assistance I'm aware of is prescription drug assistance if that's what your question was pertaining to. The only other option I'm aware of is SSI and SSDI.
Again, welcome and good luck to you. Although I'm sorry you've joined us here because of RA...I did enjoy your post and look forward to seeing more from you. Being diagnosed and coming to terms with RA can be a real emotional roller coaster to say the least...just remember, you are not alone and we are here to help you every step of the way. Feel free to vent, ask questions, express concerns or just yadda yadda yadda...that's what we're here for.
Please let us know how your next appointment goes and how you're doing.
Peace & Love...Neasy
Hi Matt, and welcome. Please know we are always here. Some of us never sleep....but that's another story. We all go through this first stage of being dxed with the RA, then what to do (others have said DO get some real medication to stop the damage to your joints), it helps if we know what you are taking when we answer your questions. (I don't believe we can fight this disease without medication)
I've had this stuff for 15 years, was taking only a mild amount 10mgs of methotrexate a week plus some mild pain meds. I was on a women's golf team and played weekly with the group. THEN, this last Nov I got pneumonia, and they found a heart condition at the same time. Operation in Dec, which went well, but my RA went ballistics. I'm on a lot of drugs now (below), but still manage to play golf a couple of times a week, walk the beach and go through my normal days activities. My doc is baffled by what happened to me and thinks I should be responding to the 'super drugs' better. He tells me to be patient! I'm trying.
I'm sure it will take a while for you to sort out the right drugs, in the right amounts and you will be fine. Probably as you say the fatigue, the depression....is the worst. It all goes along with this, but it isn't insurmountable. The meds (when they take affect) will help you.I hope you have found a good doc. (your family sounds terrific, twins what fun) Let us hear more about your treatment, this is the greatest group of listeners in the world, they support you and encourage you to keep trying, no one considers what we say here as whining, we've all been through 'it' ourselves and you'll probably here it all back, and again...WELCOME. Lynda (hurts) the golfer.
Hi Matt. Welcome to the Group. We're always glad to see new people, but, of course, so sorry for the RA that brings you here.
I know someone said they were still running, and that is great to hear. Unfortunately, there are also those of us who can barely walk, or need canes, walkers, scooters to help us.
But I think those, like you, who were athletes prior to getting RA may have an advantage, in that you will probably find a way to exercise or participate in some kind of activity, whenever you can.
I was very active, but never athletic, prior to RA. And I have other health issues effecting my bones and joints, which have limited me to some degree, a good part of my life. When it hurts to move, you really have to force yourself just to keep your ranges-of-motion acceptable.
Your incident with the hammer sounded so painful! Did it hurt later?
Take care and let us know how you are doing.
Nini
Hi Matt,
I've had RA since birth and my mother always raised me just like my 2 brothers so as an adult I don't even consider not doing things that everyone else does. As a child I played sports but no longer do. I have a daughter that will be 2 on Friday and I think the hardest part of having RA is not having enough energy to keep up with her when she wants to play. I have gone through periods of time when I didn't take any RA medication but I don't recommend it. Ibuprofen only works for so long and doesn't take care of the other problems associated with this disease. Not to mention, the RA medications always help me with the stiffness and achy.
Hi and welcome!!Hi Matt and Welcome.
Please let us know what the Doc says after your next appt. Lots of great people hear and since they have covered just about everything, I just wanted to say welcome.
Connie
Welcome Matt! I'm also somewhat new here. I was just diagnosed in March officially. Last Nov. I was diagnosed with Graves Disease (also an autoimmune disease) and I guess when you get one, you're more likely to get another...yeah.
The exhaustion is also my biggest complaint. Most of my pain is in my hands. I have 4 kids also. 13,10,7 and 1. I HATE that I can't always do what I want to do with them, but some days I'm just not physically able to. Carrying my youngest around is the worst---but she does walk now which makes it alot easier. My 13 yr old daughter is my main support system. ( as well as my mom) I wish I could say my husband was....but he just doesn't get it. He just rolls his eyes at me a lot.
I'm on meds, that I believe are going to work for me, at least for now. I was never super active, but I feel I need to be as much as possible now---just so I don't waste away. (muscle wise) I just joined our wellness center and they've put together a work out program for me, so I'm praying that'll help.
Anyway..welcome to the group- look forward to getting to know you- Let us know what you find out at your appointment.