I have never posted but I’m tired, I hurt, and am just SO OVER people telling me if I move more loose weight go back to work I will feel better. I’m putting this here because I have a feeling I’m not the only one who has heard this. I have ankle surgery scheduled. Just went through the 5 Supartz injections in the knee, and quit my job because the stress kept causing flares. It’s 3 am the pain in my legs is ridiculous this is the 3rd night with no sleep. I try not to talk to people during the day because I’m so tired and grouchy I’m afraid I will snap. I usually don’t voice my frustration but put a fork in me I’M DONE.
Yes, I can relate. In fact my diagnosis took forever (just like everyone else, I'm sure). For years, doctors would just hand me a 1200 calorie diet plan and in frustration tell me that I would stop hurting if I would just lose 10 lbs... 20 lbs... But it is so hard to do when you can't move your body right and have to fight constant pain and fatigue. When my MIL found out I was starting MTX, her first concern wasn't for how I would feel or the seriousness of the treatment plan, but whether or not the drug would make me fatter. It seems constantly hearing about our weight is an added bonus to this detestable disease. Hang in there and do the best you can do. Blessings and prayers for many grace-filled spoons.
I struggle with my weight daily. I have to remind myself I am prescribed prednisone and an anti depressant which all cause weight gain. I have to remind myself that I’m better off than some. When I was really I’ll last year I lost 25 pounds in 2 weeks. Boy did I get a scare. I do the best I can and count my bkessings. Stop listening to all those who thinks it okay to judge someone else without walking in our shoes. Keep the faith
You go fearless! Let’s count our blessings and leave room for rants! We need both and I love knowing that I can b acknowledged honestly for my journey and supported by so many great warrior women!
This is an often ugly road, thanks for sharing ur pain. It will prolly b my turn next!
It seems so easy to tell someone else what to do to fix there life. Only we know what is best for ourselves and what our limitations are. I have had many people tell me to do this or that and I will be all better. At one point in my life I stopped talking to others it was to exhausting and fraustrating. You are not alone !
Yes, everyone just wants to fix it, and with a simple easy way. Just ignore it. Most are really trying to help and their way of dealing with it is to minimize the seriousness. Just do what you know you can and forget the rest. The medicines we are on make you put on weight. It’s that simple. We do what we can and no more. Don’t feel badly for that.
So sorry that you are going through this. I too avoid people when I’m not feeling well because I know i get grouchy which only makes me feel more isolated and misunderstood. My problem is the opposite, I keep losing weight and people keep telling me to eat but I can’t. I can’t put anything in my mouth when I’m nauseous (which is most of the time). I know they are trying to help but sometimes I just wish they would just go away. I hope and pray that your surgery goes well and that you feel better real soon. Please hang in there.
You are not alone! I gained so much weight with prednisone and have the moon face and swollen abdomen, etc. Some of my family members have commented on my weight for YEARS....there is nothing I can do about it until I am completely off of the prednisone and I have informed them of that time and again.
I recently had a horrible infection and spent time in the hospital....lost 11 pounds due to tummy troubles and my Aunt said "well, that's a good thing, right?".....no matter how sick I was, it was a good thing that I lost weight in her eyes...UGG!
My rheumy tells me not to let it get to me and that the weight will come off as soon as we can wean me off of the steroids. We have tried everything and he won't let me give up, but it does get very frustrating when other people just don't get it.
I still work but it’s not easy sometimes I have to leave early and well it’s the same thing everyone else thinks they know how to make be better like “a body in motion stays in motion” but at some point you have to stop and well that body doesn’t want to go anymore… It’s funny so many people think exercise is the cure if it was then why are we still sick…
I hear ya!!! I got teenagers not a lot of understanding there. I find myself quite too for the same reasons. My left leg has decided it no longer cares for me. Painful as a Mofo. I think its good to vent. Holding it in makes me resentful. Once I vent I can usually think more clearly. Feel better. Never alone
Wow - I hear your pain! Just want you to know I read what you posted. Just want you to know that I wish I could help you. I would say some prayers for you but I am having a hard time with the prayer thing. I guess I can only say - Keep on tryin!
It is a good thing to let it out. Have u anything for the pain? Never mind the judgment of the ones who don’t know. This too shall pass. I am at odds it praying but I do believe in meditating.
My heart aches for you, I absolutely understand your frustration and need to vent. I feel this same way all the time! Try to focus on one thing that CAN possibly be in your control. My body pains lessened when I talked to my Internist about how horrible my sleeping was. So we worked together and I tried Amitriptyline to take before bed, and within days I was sleeping deeper and woke up more rested and wasn’t waking up in the middle of the night crying in pain. So that turned out to be something we could work with to make me feel better, emotionally and physically. Don’t take anyone’s opinions personally…I know, easier said then done! They just don’t understand what we go through. Don’t let anyone make you feel inferior…you are strong because of what you go through every night and day! Give yourself credit. Everything other people say, it’s all just a grain of salt. Hoping you get some relief soon. Much love your way.
my favorite is " you don't look sick" well now if Lupus were seen then I wouldn't have taken several years and 4 miscarriages before I was diagnosed. Don't listen to them, just beat your own drum
Yes I love the you don’t look sick. I say something like good thing you aren’t a cardiologist or oncologist cause their patients don’t look sick either. Tests tell a different story
Ugh! Irritating. You are not alone in this. People who don't care to try to understand or who are plain inconsiderate irritate me. I have recently gone through a terrible flare, dragging myself to work, and literally collapsing on the cough as soon as i walk in the door and sleeping most of the weekend. The fatigue was AWFUL. For the past 6 months, most weekends I was unable to do anything but rest in order to make it to work. Now doing much better since flare is over enjoying life and doing things again. The other day a coworker of mine asked me if I was doing anything for the weekend. I mentioned I was going to dinner with friends. Her reply was, 'Oh my gosh! You actually have FRIENDS and go places? You never talk about it. " She was serious. She KNOWS about my condition and that I've had a lot of problems lately. I'm just speechless at her rudeness.
You've gone through a lot. Try to stay clear from the negative people if at all possible. Only you know what you can and cannot do. You're definitely not alone in this. I hope you start feeling better soon.
