View Full Version : just found out yesterday
01-18-2009, 04:15 AM
well i guess since this is an itroduction my name is nichole but its just fine to call me nikkie im almost 29 and my passions are poetry and classical music i met with a rumitoid specialist yesterday because my doctor thought i might have arthritis im not even sure how bad it is yet i was just hit with the info so i was givin something to help with the pain they took more blood and told me they would see me in a month i dont even know much about it i just looked it up on webmd i dont even think it has set in yet but i think the only thing that scares me is that i might have to slow down if i do that i think my whole world will crumble im a full time college student and a single mother of 2 my youngest has down syndrome so he is a job all on his own and there is no one to help i think i would of rathered it be arthritis anyway i called my mother for the past 2 days i even left the diagnosis on her machine and still no responce so now i feel bad because i left her a very rude message because i know the only reason she didnt call back is because she is taking care of other people's problems like she always does my sister already told me
01-18-2009, 04:32 AM
Welcome to the board nikkie,
I feel you're frustration and I understand it.
I'm not diagnosed as yet. I'm told I have some form of arthritis. This all started just a few years ago in my feet. Then it spread to my knees, ribs, jaw and lately my right hand.
I've had mixed results on my blood work but I'm now on medications that are helping quite a bit.
Word of caution, what ever meds they have started you on.....remember the doctors are "trying" you on them. If they are not helping or are making you worse, go right back to them and let them know.
I tried several different medication. Each time the doctor told me how long I needed to try the medication before I would know if it was working for me, usually two to three weeks.
Some of them did nothing at all, some made me swell worse than before, to the point where I couldn't walk.
So be patient. If this medication isn't working ... you'll try the next one.
Which joints are affected?
I know you feel helpless and frustrated right now, but once they find the right medication you will start to feel better and regain more control over your body and life.
Things will change, but change doesn't always spell disaster. It just means you have to find new ways to cope.
There's lots of good information on this site, and folks are very friendly and helpful.
Glad you found us :)
01-18-2009, 06:18 AM
Just to say hello and welcome.
01-18-2009, 04:03 PM
well im not sure what damage it has done yet all they have done is blood work but im not sure if its too soon to tell or not but i feel better than i have in years the med they have put me on i didnt like the first dose it made me real sleepy but yesterday and today is weird i dont hurt and i have energy and all they gave me was an anti inflamitory even my back doesnt hurt and that has hurt since i was a teen because i have scoliosis but i have gotten some things done that needed to be im hopeing it stays this way but im sure i will still have good and bad days just like i did before the meds im just hopeing for less bad days thinking about it im kinda happy about the diagnosis atleast now the docs arent telling me they dont know why and i dont feel like im feeling more than what really was i was begining to think it was all in my head because there were no explanations i know thats weird
01-18-2009, 04:29 PM
:) Glad your medication is kicking in for you.
I'm on plaquenil, when I first started taking it I was sick to my stomach, dizzy and groggy.
I mentioned this to my doctor and she told me to take both pills together right before bed with a small tub of yogart.
That worked wonders.
I don't think you are on the same medication that I am. Plaquenil takes up to six months before you feel any benfit from it.
But it still might be worth asking your doctor if there's a way you can take it so you're not as sleepy.
01-19-2009, 08:29 AM
hi nikki and welcome to a group of knowledgeable and compassionate people.
Some are in your boat, no diagnosis and no help. some have a diagnosis with family support, and some have various degrees of support.
I have learned to accept that this a very dillusive disease, and if the drs. have difficulty understanding the extent of the disease, then I think it is unrealistic to expect our friends, family to understand.
My daughters attend several dr. appointments with me, and I think they understand a lot about what is going on,,,,,but even they are perplexd by how quickly i can go from feeling pretty good, to completely down and in bed. Remember, compassion has to work both ways.
I am so sorry about your son, I hope there is assistance out there for you. If there is anything that any of us can do to help you find this assistance, please do not hesitate to ask.
Again, welcome....I hope you have a good day,
01-19-2009, 03:32 PM
well as far as my son goes he's happy he has his own teacher in daycare/headstart and he then rides the bus which he loves to his special ed class at the real school then i pick him up at 3 then his friend (one on one) comes over at 5 to play with him for a few hours why mommy cooks and cleans he is the one that has it made but if i have to cut back i dont see how its gonna work because i know that i can get all his people to step up during their hours with him but their is alot that i have to keep up with like just this week he has a cardio appt and a hearing test and i have to pick him up from school because he is out of district because they do him better or his cardiologist is in oregon because none of them here impressed me its just little things but there are alot of them and the doctor made it sound like im not gonna be able to keep it up i never get to sleep before 2am and im up and out by 8am thats just the way its been for ever and on the days i didnt feel god i just wouldnt do laundry or dishes or something like that i wouldnt know what to do with free time
01-19-2009, 03:46 PM
and ive almost forgot ive never been one to ask for help but i have had to learn to do so this past year it seems like thats when i started having more bad days then good but it is still hard on me i have always done everything but im getting better the question i have is is the doctor right she makes it sound like im gonna be crippled like totally and i got atleast 3 years of full time school left before i get my degree i dont want to quit its too important too me im a recovering addict of 4 1/2 years ive never finnished anything important except my probation but its not the same
01-19-2009, 04:42 PM
it is obvious that you are a wonderful mom, and that you take incredibly good care of your son.
as far as being crippled in a short period of time, i don't know. I am 56, had lupus as a young adult, then it went into remission for many years. During my younger years, while fighting lupus symptoms (no diagnosis), i had children, and completed my graduate and masters' degrees. I continue to work today, though not as many hours or as many days. hopefully, your's will go into remission, so don't give up on your college. This is something you can do....just as you have proven you can "complete" many things.
good luck to you, nikki.
01-19-2009, 09:53 PM
thank you the reason i asked was because i dont like doctors and they did the same thing to me when i had my youngest son they had me convinced that he would never be able to do anything so i was holding him back because i really didnt think that he could after the people on the discussion board had talked to me they were able to get me to see different and now he does all kinda things i dont know why they do that i guess its to prepare you for how bad it could be so i will just continue life as i do other than having to eat and take the pills until i cant ofcourse