I'll make this as short as I can...
I'm 29 and started getting "sick" in 2004 after getting married. I was diagnosed with RA in Oct. 2006. I had to quit my job as an orthodontic assistant in Jan. 2006. In the begining...doctors thought I just wanted pain med and my co-workers didn't believe anything was wrong with me because I didn't look "sick". My husband got a new job and we had to move to another state far away from my family and friends June 2006.
There's a bunch of people here who can relate to you. It's depressing to have a chronic illness, but you are most assuredly not alone in this battle. One thing is that you do not have handle everything. If you need help ask for it and don't think you are helpless because you have to ask. No one does everything even if you are healthy.
It's not uncommon to have more than RA. Mostly a question of diagnosis.
I am not your age and thankfully have been helped with meds but I really feel for you. I get very upset when I read about people like yourself who get no relief from meds with this disease. It's just not fair. I'll keep you in my prayers.
Are you able to tolerate prednisone? It took a big dose size along with MTX to get me right initially and now I'm tapering off the prednisone with good result.
Best of luck to you and come often to talk about things. It may help.
JHope, their is a wide range of age groups on this board, from college students all the way up to .........well, I guess I don't know who's the oldest of us.
I'm sorry you're having such a difficult time. Have you gone through all those meds (enbrel, plaq, mtx...) because you couldn't tolerate them, or did they just not work? Hope you have some success with the Orencia.
I guess you feel pretty isolated being in a newish place and having a disease that no one you know has. What about church? That could be a great place to find support and build some good friendships.
JHope, welcome to the forum. I think you will find a lot of folks here who have similar stories and who can understand exactly what you are going through. There's also a lot of knowledge and information available from folks here, so when something strange comes up that gets you worried, come on the board and ask others about it. You'll be sure to get some help. Just be patient, as some folks only check in the board once a day or so, so there are times when you won't get an immediate response.
Don't worry about whining - it's allowed here. Everyone has days when they need to whine, and sometimes just talking about it with folks who understand is all you really need. Don't worry about "doing something retarded" either - I do it quite regularly and most folks will still talk to me!
Lnncn...the med didn't work and the mtx was turning my hair white.
The church I go to is huge. I haven't been able to meet anyone there yet.
Thanks for being nice:)
Hillhoney...THANKS:)
Welcome Jennifer - You'll find all types on this board, with lots of good advice and support. RA is a tough disease to have as it makes you feel cheated in so many ways. People not dealing with it themselves have a hard time understanding what it's like and it makes it tougher if you're a private person and don't share and help them understand. Have you talked to your doctor about the depression? If it's been going on for awhile, you may need to ask about medication.
Are there any activities/volunteer opportunities at your church? Maybe you could pick one thing to sign up for and slowly get to know some church members. Who knows, you may even find someone else who has RA. After I was diagnosed, a woman at our church approached me as she also has RA (for the past 25 years) it's been a blessing to have someone there that has a history and can give me tips or just ask how I'm doing.
Hope things turn around for you and the Orencia starts working soon.
CathyMN
I've been on Wellbutrin since Christmas and it seemed to be helping. I was taking 150mg twice a day. It was bothering my acid reflux so I was cut back to once a day. I've tried other ones but they caused a lot of weight gain and that is one of the reasons why I'm depressed in the first place.
My problem with the church issue is that I know I won't be able to show up very much. I guess I need to try anyway.
Thanks
I know what you mean about not being able to show up every month. I think you'll find though that volunteers are hard to come by and they'll grab you even if you can only make it a few times. I attend the book club at church and missed the last two - I was just too wiped out and the books for those months were tough to get into, but I'll be back this month. I'm on staff support and missed a few meetings - must have been brain fog as I knew the meeting nights, but just totally forgot. I was in choir prior to diagnosis and missed all of last year, but they keep telling me to just come when I can - so I stepped in during Easter/Christmas since we're always short. I think I'll get back to it more frequently this year as I'm doing better. By the way - I'm also a little shy and tend to be private, but have met some great people by going out of my comfort zone. Just don't ask me to do a solo !!
Take care
Thanks Cathy...I will defiantly take your adviceJHope, Hi and Welcome. It's a long, hard road that all of us are traveling.
The one thing I know for sure is you need to try and force yourself to get out and about. Having friends, even 1 friend is very important. Doing something useful in the community is also important to feeling good and being accepted.
When you volunteer, you do it based on how you feel. People are very understanding. I volunteer at the senior center and if I can't do it they understand. Getting out of the house is paramount to feeling better. You need to take control of what you can. The disease takes so much from us, but there are areas that we can control and not let RA take.
Have you had your Vit. D levels checked? If not, talk to your RD about checking them. Sometimes a low level of Vitamin D can cause some of the symptoms that you're having. Take care and keep posting. Lindy
Welcome JHope! I'm with Cathy and LinB, volunteering is a great outlet. I do it at my sons' (I have three) school, and have made many friends in the process. I also understand about being depressed about weight gain. I have gained 25 pounds since my diagnosis last year, and had gained about 15 pounds in the year leading up to my diagnosis. It's very difficult to try and focus on losing weight when you don't feel good to begin with. Just do your best and eating healthy is supposed to make us feel better anyways. Try not to be too hard on yourself, you have enough to work on living with your illness.
I am not 29, but I don't consider myself to be old either. Actually, I will be 42 this week. I started having symptoms in my mid-30's, but didn't associate them with anything serious. I read a book called "You Don't Look Sick! Living Well With Invisible Illness",
by Joy Selak and Steven Overman, that had some wonderful insights on ways to cope and keep a positive outlook. One of the things that stuck with me is that you have to adjust your life to a "new normal" and not look at how things used to be. If you focus on how things used to be it doesn't allow you figure out how to live with your illness and integrate it into a fulfilling life. I really recommend it. It's not very long and an inspiring, easy read.
I am sorry for your pain and we all can relate to the emotions you are experiencing. Please post often, even if it's just to vent. Getting those feelings out there can be really helpful. Figuring everything out at the beginning of your illness is the hardest part of all of this in my opinion. Everyone on the board is at different stages in their illness, so this place is full of real-life wisdom. For me it has been important to learn as much as I can about my RA. It is the only thing that I have power over. I can't change the fact that I have RA, or how much I hurt, but I can learn everything I can to help me better understand the disease and how to manage it and that is a very powerful feeling in and of itself.
Sorry to write a book. I wish you peace, and less pain as you figure everything out.
Dawn
JHope, welcome to message boards in general and our little home in particular. I'm not quite your age...I'm going to be 38 soon...but I can remember being your age! I can also remember being more active, having a workaholic (first) husband, and being newly married....my RA started just two months before my second marriage. Having the additional challenge of being far away from friends and family makes things even more difficult.
So give yourself credit for all you're dealing with...nothing to be embarrassed about at all. I just took my 4th Orencia infusion as well and am waiting for results. My infusion nurse said that most people are seeing results happen gradually after the 4th, 5th or 6th dose, so it does take time.
Depression is common with this disease. Can you possibly see a counselor or clergy member? Have you been on any anti-depressants (many help with physical pain as well)? Or could you try a supplement...I take SAM-e (although you shouldn't take it you're still on methotrexate). Of course you can always find support here, any time!
Hi Jennifer. Welcome to our board. You now officially have lots and lots of new friends, if you'll have us! LOL. BTW, saying something "retarded" is almost a given around here. We blame it on "brain fog" or "chemo brain." So don't hesitate to tell us whatever is on your mind, if it makes you feel better. You should also know there are no "stupid" questions either, so ask anything. Someone here will either know the answer, or find it if at all possible. You're in good hands here. I'm glad you found us. Hi Jennifer
So sorry you are in such pain. I hope your meds start to work soon. I have RA and can definitely relate to the depression this disease causes. I feel that way today also. My husband went over our friend's house for a bar-b-que but I couldn't walk well enough today to go. I feel so useless today. I know deep in my heart that things will get better. I will keep you and all of you in my prayers.
HEy! Don't worry......I am "tarded" ,have been for years. It comes with age, RA and other diseases.
The way I figure it, we are allowed to cry and we are allowed to grieve. Life is full of wonderful times, awful times and illness from my view.
THe way I see it if I wasn't in so much darned pain or so sad sometimes I would never appreciate the days when I smile and can move around without grimacing.
hi lhope welcome to you.. sorry to see your having these problems..
i see you may have lupus to...
but i have read about ra and lupus and it appearse not all bad news
as the lupus would not be pure disease ..not sure how this affects ra
in being pure disease..
a little info
Are people with lupus more likely to get other problems
where the immune system attacks the body?
The answer to this is yes. Anyone with one condition where the
immune defence mechanism attacks the body (so-called autoimmunity)
is prone to another one. We know this is the situation with all
autoimmune diseases. For example, people with diabetes (where the
body attacks its insulin making cells) are more likely than the
general population to get rheumatoid arthritis or thyroid diseases.
In general, if a patient has lupus combined with another autoimmune
disease, the lupus itself tends to be less severe. In the same
way, the other autoimmune disease, which can occur without lupus,
tends to be milder. Correspondingly, doctors can get away with
less powerful treatment in these ‘overlap’ or ‘mixed
connective tissue’ disorders.
Hi Jennifer,
My name is also Jennifer and I am 28 (will be 29 on September 23).
I was just diagnosed about 3 weeks ago, but have been feeling bad since
2004 after my twins were born. It started getting really unbearable
this past February and that's what sent me to the Dr to find answers.
You sound depressed, maybe talking to someone would help, either just talking on the boards or maybe a professional. Feel free to private message me too, if you want.
Copyright ArthritisInsight.com