What type of patient are you? | Arthritis Information

Yeah, Katie... I think I have that problem too. I for a long time after getting married would try to get my hubby to go into the room with me so he could tell the doctor my problems.

I have had my mom go with me to a couple of doctor appts since being married... boy was that GREAT! She told everything for me and I did not have to open my mouth, look the doctor in the eye or even his way and it felt good.

I am not much into talking to people I do not know. I avoid eye contact with just about everyone. Wonder what that is a sign of? Lying?

Anyways....

I used to be like you Joonie, then I learnt that doctors aren't mind-readers no matter how much I want them to be!

Now I'm assertive and make sure I have a say in all my treatment plans. I ask questions and often arrive with a list of things I need to discuss. Sometimes my doctors and I negotiate because they want to do something I'm not so keen on. I'm lucky in that I've known one of my GP's (I have 2 - one at home and one at uni) since I was a little girl, and he knows me pretty well.

OK the only things I am not so keen on... are not negotiable

Like the visit to the gyno... not negotiable for "insertion of fingers" YUCK!!

Getting undressed for the annual pap smear... not negotiable.

Getting blood tests done... not negotiable. (well it kinda is when you have an RD who does not do bloodwork and not asking for blood work).

Anything that has to do with a needle seems to be non-negotiable.

Oh and the breast exam ... non-negotiable. A strange man playing with me boobies is just weird! I think my gyno is gay... which makes visiting him even weirder! Joonie, you must be in mega hilarious mode, today. Your posts are cracking me up.  I'm pretty assertive and aggressive.  I demand respect, time, answers from my physicians.  Almost always get what I need.  I'm also well prepared so my docs know that I mean business.  I don't waste their time, I'm early for all of my appts., I don't chit chat unless they start chatting, I keep to my agenda - not theirs.  They work for you.  You pay them the same as you pay the plumber, the roofer, or the grocer. They are not a God, they are a human being who you pay to help  you get well or to keep you well.  It's a partnership between you and your doctors.  Lindy 

No one would call me aggressive, but I don't have a problem with speaking my mind or asking questions.  I have certain expectations, but I don't make "demands".   A friendly smile never hurts, and you usually get one back, along with time, answers and respect.

Ditto the welcome Steph, I'm a relative newbie to the site and RA. The information is fab, the help and assistance to what you may think are silly questions is overwhelming. Just ask away, there's bound to be some with the information you need and/or someone that will go and find it for you.

I am a great patient..

Very knowledgeable, assertive and compliant.

When I have a scrip for  x pills,  x times a day I might forget a dose once  every 2 or 3 months. OTOH if I sincerely feel a med isnt working, I dont hesitate to tell the dr and suggest alternatives.

I've had dr's actually say to me, "its a pleasure to work with you." My regular NP has said several times, " you really know your body, and you are interested in learning."

 I hate to admit it but I have very little knowledge about RA and the treatments for it because like Katie, my mommy always took care of this for me.  Being born with it, there was not much explanation given to me as a child of what I was dealing with and the medications I was taking.  I deal with my RD like joonie does.  Honestly guys, I don't know what's normal pain for everyone or abnormal because I've lived with it my whole life.  I just deal.  The only time I think there's a problem is when I have some serious pain.  Example: I didn't even know fatigue was a symptom of RA.  I just thought I needed more sleep.  That is until coming to this board and reading these posts.  The only medication I am familiar with is plaquenil because I've been on that for many years.  I was fortunate enough to be in remission for decades after having both my knees and hips replaced at 12.  Now, I need a little more help than prescription naproxen, which is what I've been on most recently.  I just got health coverage again and have to wait for a PCP appointment to be referred to a new RD but thanks to this board, I will have a little bit more knowledge seeing this new RD than I have had before.  I know this is off topic and I apologize but is there a book I could read that would give me more information on RA?

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OMG!! Steph!! I was just like you back in '05, did not really know what JRA was! That is when I really had different pain. Like you I was not told much about my JRA. I just knew I had "arthritis" and that my bones would one day be that of a 60 year old when I hit my teens. I went into remission when I was about 11 or 12 and I slowly started coming out of remission when I was 17. I did not know I was in remission, because I did not know my JRA could go into remission, I just thought it went away and probably was never coming back, it really slaps ya back into reality when it does come back. I was put on Lodine XL and I took it off and on, and then when I was 18 I got preggo, so went into preggo remission, and then after having my daughter, I started going down hill more every since.

Like you I did not know fatigue, loving to sleep my days away, the pain I had, and swelling was not "normal". After having my daughter, I mostly sucked up the pain as I did before and did not see a RD until I was having increased morning stiffness. To me morning stiffness was "normal", but when you have a baby to tend to, you have to get it seen about. SO, I went to my first RD when I was 20. Then my 2nd RD when I was 21, and then I stopped going to RD's all together.

I remember wearing casts on my legs to sleep when I was about 4 until 2nd grade I think. I am guessing I had really bad morning stiffness, as they did not want me to sleep in the fetal position, but with my legs out straight. I kinda remember the pain from when my mom would work my joints in the morning before school to loosen them up. I remember sitting up late at night with my mommy rubbing my knees because I had so much pain and her rubbing them seemed to make it better, until the baby asprin kicked in. I remember when I was a little older, about 7, my ankles would swell for not much of any reason, even just wearing shoes that rubbed my ankles would make them swell and very painful. But I thought all of this was "normal". I never told any of my friends, I had JRA, as I guess I thought they had it too. I tried to be a "normal" kid, I would push myself to be like everyone else, but it was hard on me. I missed a lot of school, and had to repeat kidnergarden because I had missed soo many days. I have all my report cards and from K-6 grade, the comments from my teachers are "Great student, but missed a lot of days this semester." or something to that affect.

sorry to ramble, I just thought I would let you know you were not alone in not knowing what exactly what you had. I did not know either until I came to this board. I did however notice that JRA'er's are some what different than people who have fallen ill with RA. Most times I cannot relate, and then other times I can. I guess I can some times because of my really bad flare after having my son that I can relate with some of it, but most times I do not reply because I cannot relate to it or I think my advice would not be vaild for them. PLUS, afraid to give out advice, I might have had this all of my life, but I cannot help someone else.

Joonie,

OMG!  Your story sounds like mine.  I had been on a decades long remission until about 2002.  I hadn't had any flares at all since I was 12.  I had all both knees and both hips replaced at that age due to the disintegration of my cartiledge.  I also wore casts although I can't really remember how old I was.  I just remember that they were these huge up to my hip casts that made it impossible to move in my sleep and were very hot.  One time I apparently gained enough strength to roll and the weight of these bloomin' things rolled me right out of bed and onto the floor.  UGH!  Had to wait for Grandma to come pick me up off the floor.  I think I may have been 5 but not really sure.  It's funny how as children we just adapt so easily to this type of issue(JRA)  Thinking that everybody felt the same pain as I did I just plugged along as best I could.  I also had a wonderful pregnancy with my daughter, Isabel.  The RD had warned me that women with RA that have good pregnancies can come out of remission.  I had started back on medication in 2002 because my RA was starting to give me problems but then it was still treatable with Naproxen.  Before 2002, all I took was an occasional ibuprofen.  Not even once a week.  When I got pregnant, I felt completely normal.  Or at least what I guessed was how people without RA felt.  It was awesome.  I had more energy then ever.  I thought I was going crazy.  My big "whats's going on here" moment was when after 20+ years of not being able to touch the floor all of sudden, pregnant and all I could do it.  Really thought I was losing it then. 

To all,

I am so glad that I happened upon this message board.  I have found all of you to be very informative and can feel that genuine concern for each other.  I have learned so much from reading all your posts even in the short amount of time I've been visting.  Thank you!

Gimpy:  Thank you for the reading list.  I will definitely be looking into them.

I bring my husband so he can be the pain in the a$$ :)

Basicly i can't take most meds due to chemical problems that make me worse with symptoms and try to stop my breathing.

So..... I bring my husband and usually a list.  I drive my doctor insane also, basicly because i have things going on in my body that have nothing to do with any immune disorders she treats so she is on an "ignore" basis right now.

So, I started me back on pred with my family doctor since she won't talk to me until the middle of September lol.

But, if she ignores anything, walks around any decision etc. my husband goes into a verbal attack.

Once I needed iron pills.  She said to get any from the store so he said what dose?  She then stated just any from the store, he again said that they have 3 doses, which one so she got angry, left the room and came back with a prescription.

That prescription was for the highest dose that wasn't even sold over the counter and for a brand that she told us was available ovre the counter earlier but the pharmacy said it is prescription only.

Anyway, long story long lol, he yells for me and makes sure something comes out of the appointment.

I hate my doctor though (her work, not her).  She ignores you, doesn't want to face things she doesn't understand and just drives me nuts.  She got mad at me cuz mtx and plaq made me worse, like I could stop my knees from growing 3 inches.

But, husband is my guard dog lol

Bubba...I do the same thing.  Bring hubby and he can be the pain lol. 

I am pretty assertive and pretty compliant.  I always ask questions and go with the flow on what is recommended.