I posted this on the buddy system section, but it doesnt get much action, so I posted it here too...
hey! anyone tired of getting treated like some alien just because we look puffy and wierd from our illnesses and prednisone and other meds we are on?! I never expected this! Even my family wont put up any pics of me since I went from having RA, etc and looking somewhat ok... to now looking like something is wrong with me, but people arent sure what... since I am almost always swollen, etc. I look like crap and I never used to care too much about vanity, which also makes me mad. I was all about cycling, my very physical job and did many other sports... for which I am so thankful I could do those things when I did... even when my knees hurt since I was 5 or smaller. I may have had JRA too then. Anyway! I am so tired of feeling bad about the stupid looks thing when there are so many REAL problems in the world! Anyone experience this? It makes me mad also that "regular" folks who are healthy who choose NOT to exercise, etc are considered just fine, while I get the crappy comments and looks and I didnt choose to be ill! I am only 34 and this sucks! My family avoids me since they just dont handle this well... and friends are hard to find. So... anyone want to chat about that or share an experience?
My problem is that people just don't understand what I am going through. I don't look like I feel awful. I work in a place where the other co-workers like to pawn off work onto anyone who will do it. Usually it is me. Just recently, I had a bad flare. But, you couldn't see what was happening because I wear loose scrubs to work. I got the usual eye rolls and rude comments when I refused to do this one person's work while she sat down and watched me. How do you explain the fatigue that comes with this? Saying "I'm tired" really means nothing to anyone. Everyone is "tired". I am not one to complain or say much when it comes to feeling not well. Nobody knows when I am in pain most of the time. I don't let it show. But, I do get tired of watching others slack off and then get mad at me because I am not doing their share of the work. It is great for them. I do my job and theirs, and they get credit for doing good work... when it was me all the while. I just don't know how to communicate to people that I can't do this anymore and somedays I hardly can do my own work. I understand that some people look at me a say things. I have an insulin pump and people don't know what that is and what it looks like. So when people look I say can i help you. They don't know what to say. I guess that people just don't relize that people have eyes and ears. I just brush it off. College was the hardest for me. The weird looks and the whispering. Sorry about all the problems. I hope people will except you for who you are and try to see things from your point of view. I really wish that more people had an interest in finding out what RA really is. I think that a lot of people are insensitive to what we are dealing with on a daily basis. I would welcome any questions from anyone trying to learn more about it. It is much more frustrating when people tell me about their ailments as a response to the RA issue. I can see why some people choose not to tell anyone.Self image is a real problem for me. I have gained probably 40-50 lbs since I got ill. I really have the moon face and I had a really round face to begin with. I also have the swellings.
My sister was the cruelest. She's a jazzercise instructor and was a size 1 (didn't even know they had those at the time). First time after she saw me since I got sick, she just said, "gee, you've got fat!"
My kids are the greatest though. They still think I am their beautiful mom. And my childhood friends lie and say I haven't changed a bit.
I do have a way of dealing with it though. I educate people. I let me know I wear leg braces all the time and will expose them from time to time. I can't be in the sun very long and I have special evacutation procedure written just for me at work. I work for a good company, American Express. They do a lot accomodate people.
I decided I wanted date again. And, I started thinking about all of it. There's the leg braces during the day, I wear wrist braces at night, and I have CPAP machine for sleep apnea at night.
So, here's my romantic moment. I strip leg braces. They velcro attaches so you hear RRRRRRRip! RRRRRRip! RRRRRRRRRRip!. Then I don the braces. The highlight, and I have shown this to two of best friends, is the groucho marks mask with the scuba gear like attachments for the sleep machine.
My friends roared! And, that made it alright.
I had train my friends how I wanted to be treated. Sometimes, they still don't get the fatigue and pain. But then sometimes, they baby me too much. But at least believe that it is an illness and will me out if necessary.
Hope this helps or least makes you laugh.
Unfortunately in this society , you are expected to be perfect! You must be a certain weight , you must have a certain look, you must be perfect!!! God forbid you are overweight because immediately, you are tatooed as being lazy, stupid, ugly, that you don't care about yourself and that you must eat like a pig.Handicaped people are to be ignored, they don't want to look at people in wheelchairs, they don't want to see people with cp, lost limbs, deformed bodys, it might put them in a blue funk seeing a crippled. It is everyone's fault that we allowed our society to become like this look at how many teenage girls are anorexic, young men shooting steroids in their bodies to bulk up and look how many teenage kids want F------ PLASTIC SURGERY AND THEY AREN'T EVEN 18 YRS OLD AND THEIR IDIOT PARENTS ARE ALLOWING IT SO THEIR CHILD LOOKS PERFECT!!!!I pleasantly met another woman with RA the other day when I was out taking a job. It was really the first time I had ever spotted one. She was on a panel at a hearing I was taking. She was a breath of fresh air and a really nice lady.Here's what the doctor told me when he and I were arguing about cutting down on the Prednisone. I asked if it would help me lose weight to cut down because I don't want to because I am so much more functional.
Prednisone makes you gain weight in two ways. One is that it puts fat on, makes fat. Two, it makes you hungrier. He said in order to lose weight you have to do all the right things. Watch what you eat. Exercise, etc. Even then, some people dont' lose. But I've been reading in this forum that people do lose weight when they go off of it. As I have started to taper down, I can tell I am losing some of it.
I think if I had known in advance, before taking it, what I needed to do to help keep the weight off, I wouldn't have gained so much in the first place.
Prednisone can be a lifesaver. Just try and get your doctor to give you only the minimum necessary, get you on the other meds that allow you to get off the Prednisone.
I still take too much and it is scary the consequences that I might be facing. But I have to keep working for now. If I could not be working, I know I could cut back more. But I am trying to lower it, but it is a long process as I can only go down 1 mg a month.
Wow, sounds like a strong medicine. The more I think of it, the more I realize that though I have many more years of working full time ahead of me... I really need something stronger than what I am on now. For now, to help me out, my family doctor is giving me Celebrex until I see the specialist. To tell you the truth, my swelling went down for one day, and the pain is so bad. It doesn't cut it. They say not to take anything else like asprin or what ever with the Celebrex, but some days I am so tempted. Just to keep me functioning.Prednisone is strong. It is mostly to take down the inflammation in our bodies. But it does have side effects. They get you on Prednisone first until they can get the right kind of medicines that will treat the whole illness better. Then they will get you off of it as soon as it safe to. I had no choice in going on it. It was life or death proposition for me.
If you are on Celebrex, which I believe is similar to Vioxx (which they took off the market), then they may allow you to take tylenol. I use the Arthritis Extra Strength Tylenol.
They can do this is because they are not in the same family of inflammatories. But you have to call your doctor and make sure. If you take too much of these in the wrong combinations you can damage your kidneys. But they know the combinations that are safe. It is important to let them know that your pain isn't under control and follow what they tell you.
Other ways to reduce pain are hot and cold packs, sportscreme (I love this one), resting, jacuzzis, swimming and parafin baths. Even a warm shower can help. In the winter, sleeping under an electric blanket is supposed to help also. But in Phoenix, I have not been tempted with that one.
Good luck and here's to less pain.
I'm on all kinds of meds including a low dose of prednisone (4mg per day). I don't look particularly fat even though I have gained maybe 5 pounds on it. The prednisone can make you retain water so it's important to really cut back on salt. Sweets are another problem for me because I really crave them.I still eat sweets but I cut the portion in half or thirds and try to fill up on more veggies and fruits before I eat desert. I don't look too sick but I really am in pain a lot of the time. People think I'm faking it sometimes at work especially since I hardly ever take off time. When I requested half time for next year, the union said but you're working full time, that means you can do. I think it's bad for both those of us who look ill, and those who don't.I hate how just because i am overweight, people think i eat cakes and cookies all day.
this is my food list for the day....
breakfast - organic oatmeal with stevia instead of sugar
Lunch Toast
Snack Fresh Fruit
Dinner salmon and organic green beens
Desert apple
Now, does that sound like i am an overeater? I have always had horrible problems trying to loose weight and now my rhummy is trying to act like I am fibbing about what I eat. I even tried to get her to lsiten to my husband about how much I eat and she decided I ate way too much fruit then and all my calories came that way, I would have to eat about 6 apples or more to get even close to 400 calories.
That's what bugs me.
I don't mind people thinking i walk funny etc. It gets doors opened, people give up their seats for me etc. Not worried about it.
Thats alot better than my diet. that sounds like a perfect diet. I hope some of the extra weight will start to come off. I guess I'm fortunate that I have a good metabolism. Weight comes off as easily as its put on. Just a little change in routine and eating thats it.
I wish you all that are on predinsone luck on losing weight. The best way is to get off of it. I know that not possible for everyone.
My appearance has changed drastically since I got sick. I am 50 but at 49 people told me I looked 30. Now I just look sick. I have not lost the weight that I put on from the pred. and I don't know why. My food yesterday -
Bowl of Special K - non fat milk no sugar
Lunch - Smoothie - tons of supplements - algae, protein, calcium, you know - the gritty kind of healthy smoothie
Dinner - Chicken sandwich on rye
Thats it and that is typical. I didn't even finish my sandwich. I walk a lot at work and get in and out of a big truck (it hurts)
I have been off pred. 3 weeks and lost two pounds. I so miss looking healthy. My face is less round which is good but when I went to Sedona and saw pics they took of me, I wanted to cry. Also, my hands and feet are getting VERY ugly. I look at them and I want to cry.
I am a newlywed. I worry so much my husband will no longer be attracted to me. Not only physically but I can't do most of the things we used to do together.
I HATE RA
I feel so bad for you. It does take time to lose the weight, so don't give up. My RA doc did say some people don't lose it, which sounds incredibly discouraging and frankly I don't believe him on that one. Talk to your husband about your fears. Let him know all that you are doing to try and be healthy. I at least look healthy now even though I am not well. When they put me on Remicade, my friends said I looked immediately better. It concerns me that you are seeing damage in your hands and feet. That is an indication that something isn't under control. You should talk to the doc about that. Is it because they are so swollen, starting to misshape or drying out? The solutions are different for each one. Don't forget you can see a podiatrist for your feet and an orthopeditist for your hands. Don't give up, especially on love. Real love is accepting what we cannot be and loving what we are. I wish I could find that. My last boyfriend was blind, so he couldn't see all that I felt was ugly. In the dark, he thought I had beautiful legs, soft skin, and wonderful shape. Take a look at people much older than you (and I am your age). They still love each other and most of them aren't pretty any more. That's because they've found a secret that is outside the magazines and Hollywood. Inside is the beauty and inside is the love. But people are shallow are your fears are too real. Hang onto who you are. I feel for you because I know exactly how you feel. But this disease cannot rob you of your beauty becomes that comes from your soul. I hate RA too. I feel like it has robbed me of so much. My heart reaches to yours and hopes it finds some comfort. PS Dar - You are so loveable - YOU WILL FIND TRUE LOVE - TRUST ME.
I finally, thankfully, came to the realization that I would never judge OTHER people based on how they look, so I decided to grant myself the same rights. I knew I wanted to teach my kids not to judge others based on the size of their butt, but rather on the size of their heart! To do that, allow myself to enjoy who I am, at each stage of my life. I didn't want to spend my life postponing happiness anymore - I'll be happy when I can lose a few pounds, I'll be happy when (insert anything here). I decided **** it, I'm going to be happy now. When I reach the finish line, I don't want to look back on my life as a wasted resource. I'm gonna use it up completely and fill it with as much fun and happiness as I can! I don't let fear or embarrassment hold me back anymore. The amazing thing is, when you finally accept yourself for who you are, and allow yourself to really enjoy that person, you'll find other people do too. The ones who don't well, they're not worth any of my precious lifetime minutes! Hey gang, it has been awhile since I have visited, been so busy or sick. I did want to comment as well. It has been 16 years since my dx and I have run into some really thoughtless people along the way concerning RA and Fibro...it is astonishing how awful some people can be. Recently I had a runin with my neighbors...well it is not the hubby I have the problem with, it is the wife. Here I do all this work outside, run my household and take care of my mother and with the help of my sis across the street we manage ok. We both have RA and Fibro. Well my neighbor lady comes whining all the time to me about this or that and how she and hubby are seperating and all cause he does nothing around the house. Let me tell you, it would be a godsend to have a man around the house that does all he does for her! Here I am doing the lawn, all the trash and the garage and cleaning house ect. She just does not get it when she says her hubby doesn't get it........the woman has no idea of what we with a disability can barely do yet HAVE to anyway, and then is the most ungrateful person in the world that I have ever met. She was the one that took advantage of me with running her son all over town cause she had to work or it didn't fit with her schedule. SO I said no more. Well now she is trying to be real friendly and quite frankly , she really made me so angry I no longer want anything more to do with her. HEre I have trouble doing things but must, and she ........well you get the idea. People can be so callous an dmany people have it so easy......our disease is so invisible except to an xray or a trained eye, and yeah I grow weary of explaining it all too. Arg! I get so frustrated an dalways have when people just are so rude and thoughtless. Ok done with my rant, I will try to write something a bit more positive today! Just wanted to comment, yeah people can be rude and uncaring and dismiss as RA as a "nothing" disease". You are defianetly right there my own husband thinks that I am using this disease as an excuse. But let me tell you he wants to go to my next doctors appt. because he doesn't believe that my MRIs show bone erosion in my hands and feet. He doesn't think that this is serious at all don't know what to do about my own husband. Any suggestion there. Good ones, Nichole, Roxy and Hill... I think my main issue is not having my family undersand. I have always sent friends and family info on RA, fibro and SS and also the good ol' Spoon Theory, and anything new I find... but sure have learned that not everyone will understand it. On the other hand, sometimes people we never would expect to understand end up doing just that and its a nice surprise... that happened to me a week ago. Also as posted, people dont know how to act around disabiltity. Nobody is really educated on WHAT to do. My old work had a class to try to raise awareness on just that... but everyone hated taking it, so it didnt really work. Its a society issue... just like death... we just arent taught what to do about it or how to behave around it. I just wish my Mom and Dad would want to see me instead of avoiding me. If I had them on my side more I think it would be more comforting. THey just dont deal well with this kind of thing, I dont think. I still love them, just want those nice family connections that other people have. I do have to say my bro would be there for me, he is just very busy with his own life and family. I am glad for my one constant supporter... my man! He does a lot for us and me and he has been to a few of my dr. appts and has lived with me as I went from his cycling partner (that is how we met) with a hard job to a frustrated gimp! hehe! I do agree with the posts here on fearing losing the great men we have since we are a mess and they are so good looking and fit... etc. I fear that too. I look so different and a lot of my identity was based on physical abilities like cycling and wake boarding... and being a scientist... and he admired those things about me. I worked hard at those things becaused I loved it for one, but also because I have always been average looking and never cared for all that vanity crud anyway. I just have never looked like the 'made up', put together women and being fit made up for that, so that is why I fear losing him. I dont want to look made up anyway... I just want the "me" back that I was so used to... but I am just whining now! He always says its me he is in love with and not to worry... its just hard sometimes when he is out riding with groups of folks that include a fairly nice looking bunch of women that are on his team several times a week. It used to alwasy be us riding together... but things change. I trust him... some of the gals I dont trust. (is it me or do women seem get more "grabby" with men when they are around 40 or so? I am 34 but my man is 40 and a lot of the women are around that or in between... but some seem like they are just after any man close by.. taken or not!) We do get out a few times a year on our tandems though... and I am alwasy grateful for that. I have hope to get better still too. I even got to ride my wonderful road bike for a short spell in January of this year. It was so painful but I still was so happy! rambling on! Sometimes its just good to vent at the prednisone and the crud we all go through! Since pred redistributes fat cells, one doesnt have to even gain weight to look differnt and chubby.. but yes, its a good med. I call it a love/hate relationship! I too went through that stuff at work... since I didnt look so bad then... and that totally sucks when people are so mean. My work was pretty harsh. People rarely understand. One gal from work finally did after she got fibro alone... and she acutally apologized for giving me a hard time years later... but it took having to feel the same crap from others for her to get it. And I know people really cant understand unless they have something. Now, I am icky looking jsut about all of the time... and the swollen knees and ankles as I think Roxy said... me too... all the time! My legs were one of my better qualities, but not anymore! Doh! Oh well, at least I have two of them! I know we are much luckier than a lot of people out there. Well, that was too long... gotta stop rambling!
hugs!
hope things get beter soon!
Nichole
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