I woke up today with such an icky feeling floating over me. i have no clue why or what but it sucks i just want to be happy like ussuall, its even more frustrating when you dodnt even know what is wrong. im sure im just stressed out. i studied all fri and yesterday for my organic chem exam and im going to study all day today too, except that im going to take a break in the middle to go to my ballet class. i need to do well on this exam! i dont have a fever anymore and for now my mouth sores have cleared up...they come and go anyway. my joints are still awfull but not much i can do for that.
one thing that bugged me last night though, one of my friends asked me if they ever figured out my rash and i wa slike no, they decided that it was either an allergy to my meds, or lesslikely lupus. Well one of my friends was like no if it were lupus you would be sick. and im thinking what do you think JRA is? do you think its nothing? I am sick! i just would rather not show it as much as possibile. I didnt say anything to that i was just like well... this was the same kid who couldnt understand why i would have trouble with the 5 flights of stairs. he is awesome person but not on this matter. just annoyed me. then my other friend...its sort of like a bad competition between us, who is more diseased lol she has crohns and i have everything else. but the obnoxius thing is that she feels crohns is such a big deal (which it is) and that JRA is nothing cause im most likely not gonna wind up in the hospital because of it. she is going on and saying how her bloodwork is more crucial because they have to check her liver and stuff....im like SO DO I! why does it have to be a competition? it bugs me so much when she makes it seem like arthritis is nothing to crohns. crohns is bad i know it is! but at the same time she doesnt ussually hurt....she was hurting one day and was freaking that she would go into the hospital. and i asked her if she ussualy hurts and she said no.... since she was dx in the hospital she feels like everytime she flairs she will be in the hsopital again...
blah, friends dont get it, even ones with other chronic diseases. mermaid, I don't think it gets any better as we get older!!!
Sad too. Wish I would have understood more to help those that needed it. Thank god for the good old world wide web now where we can learn all kinds of new things.
Good luck on your exam.
Hey LM!Hi Lm, I know how exactly how you feel, I went to visit my son after my heart operation and all. My arthritis was undercontrol with a lot of predisone, SO I LOOKED FINE. My DIL went into that song and dance routine about how 'diet' is the cure-all for this disease. HUH?!!! Like broccoli or something will fix this.?? I was sick that my son's wife had so little compassion for me (Didn't even ask what happened to me?, etc. just a general 'How are you? What happened?, How do you feel....? would have been great! (my grandson and granddaughter were very compassionate, hugged me and asked about how I was doing. the normal thing).
so i totally understand how you are hurt that your friends don't 'get it'. We try to explain as best we can!! I'm glad you have 'us' to confide in as almost no one understands what happens to us. Lynda
*hugs* You need these! Lots of them!
I just heard it again today at a family gathering... about the aches and pains of everyone else. If we could "get over it" we sure would!!!!
Best of Luck !
I have the same problem with my family. Even my mother, she has had palmo plantar psoriasis for years but hasnt reall had the PA until recently she has had twinges and the occasional painful nights with her knees. She doesnt have the extreme fatigue or morning stiffness and constant never ending pain. And yet she says she knows now how I feel (yeah right )I know!
Some good advice I received from a great friend whose son has a chronic illness was that when certain people ask how he is to answer "fine thanks" or "really good" and leave it at that. (because he never actually is fine)
You soon figure out which people really want to actually know how you are and those that ask out of politeness but just DONT GET IT.
and she was right - I now answer the same way to MOST people who ask about my daughter - save the frustration of their daft comments when you give the real version.
some poeple don't get it - and wont - and good luck to them.
I sure hope yoiu have some supportive people who DO get it. If not - stick to this site as their are some very kind hearted people here who REALLY understand.
thats what i do.....i just say im fine. i dunno recently ive been finding that the friends that have medical issues themselfs are the least supportive.....my friends are amazi ng just not in this respectLil Mermaid
I have seen this happening many times since I was diagnosed with RA 12 years ago. People even who you would least expect come out with crass comments. Yes, how can you have arthritis when you are so young is one I got (even though I was 35 when I got it people thought I was about 25 as I look young!). They think RA or arthritis is an old person's condition. Or think it is wear and tear of a few joints .... no idea about the disease elements, etc. of these conditions. Or they don't believe they affect the immune system .. as it's just trouble with your bones, they think!!!
Then it was people laughing as I limped and saying things like "chop-chop . . come on hurry up!!" or laughing at my walking stick and I felt like cracking them across the head but I prefer to let people like show themselves for what they are and just smile. I can tell you are the sort of girl to say "I'm fine thanks" and be posititve and I have always been that way. Maybe it's so hard for some people to understand that it comes out all wrong ... when they ask or comment.
I started a few years back to do some voluntary work and the committee are all disabled people or family and friends of. One lady is convinced I don't have problems, and questioned disabilities of several others involved, as she thought this of me because I can walk (often badly though) and don't use a chair. She even doubted my disability because there have been some good times when I haven't needed my walking stick and she said how could I need it some days and then others not? Crazy person. She used to try and make out that there was nothing wrong with other members of this committee who were/are very gracious about their problems. It all got too much for me and another guy last year, who felt the same and the aim of the meetings, etc. was lost because there was so much bickering and bad feeling from this lady. However, because I know she has problems too I am willing to smile sweetly.
Don't let them get you down, Lil Mermaid, you will find that those who really care will bother to ask you how things affect you or be understanding as to how they can help wthout being intrusive or making a fuss. Like Mystery says, I say I'm OK whatever i am feeling. I usually respond "not bad at all" or "good thanks" Those who care will know if you're not.
I am quite new here to this Forum but have had such good advice and support and hope i have given something back too. There's some great people here I can tell.
Keep smiling lovely Mermaid
Joolie
People can be so cruel sometimes, even friends & family. Let's just offer them some M & M's covered in Ex Lax! And make sure that there is no toilet paper in the bathroom. OMG, guess I am tired this evening, but it is a good thought isn't it?Now n then!
M&M's coated in Ex-Lax and no toilet tissue sounds evil ... but funny (unless you ate them!!! )
BTW I had some peanut M&M's today ... stole a few from my hubby's bag, but they weren't the Ex-Lax variety, glad to say!
Joolie
LM, when I was younger I had a friend with MS. Much like your Crohn's friend she would compare our diseases. Of course I was in an RA remission then so I didn't have the problems that I'm having now. Katie's idea of asking if she needed to go to the hospital was about the same as what I did with my friend. If she was complaining a lot I would ask if she wanted me to call her doctor for her. It always ended in a No answer and eventually she stopped comparing illnesses.
I can soooo relate to feeling like I'm in competition with others. It is so aggravating.....like some of you guys, some of my extended family are bad about doing that.
I'v learned like many of you, I just smile sweetly and say I'm fine.
Thanks everyone, and welcome Joolie!hi Lil Mermaid
Thankyou for your welcome
Joolie xx