So, ive been to the doctor recently after starting all over as far as my meds. These doctors dont listen, this is so frustrating. For example: when I come back after testing she repeats everything that I know and explains it to me. I know I have lupus sle and my clotting disorder was caused by lupus. Not only do the doctors not listen but my family, friends, and my boyfriend dont listen. Im sick of this stuff, my mom has noticed im stressed…hmmm im 22, 2 jobs and school. Explain to me why I shouldn’t be stressed. She says that makes me sick and angry…I know that, but youre not helping the situation by saying im doing this to myself. Im telling my friend im upset and she asks me whats wrong…I ignored her, why? Because we were just talking about how im really frustrated and ill. But I have to listen to her dumb stories about her “boyfriend” and support her when he cheats and lies; .my boyfriend is an idiot he knew I was diagnosed with a T.I.A this summer ,so I had a mini stroke when I was 21. He upsets me, and doesn’t understand this illness after 4 years of dating…really? He just told me hes sick I asked him whats wrong, it honestly sounds like a cold when he knows he should’ve told me. Now im sick. People gamble with my life at my expense. None of my friends check up on me. Nobody cares, and ive never ever felt this bad in my life. Im not imagining this stuff. Im sorry I vented but alot has transpired
I totally understand where u r coming from I was diagnosis with lupus nephritis 3 weeks ago after months of tests u have come to the right place my family wants to help me but I get frustrated when they snap at me u will have alot of support here I went thru 3 biopsies (lypnoid, bone morrow, and finally a kidney biopsy im currently on transplant meds to slow down my immune system from destroying my own kidneys take it one day at a time hope to hear more from you. We all need to vent and its easier to vent to those who are going thru the same thing.
I am so sorry you are going through this! It hits home all to much! I have gone to may doctors as they all don't know what they want to do or don't agree with one of the other doctors etc.... I am 21 so I know the struggle, as well as when other people complain about something and I am like you have nothing to complain about. I try and explain to people but its like they just don't want to listen or even try to understand. Or for like my brother he is in denial, not wanting to admit his little sister is sick. People are like you should just ignore he negative people and that is easy for them to say but its not that easy. You want people to understand not have sympathy all the time but just simple understanding. I really hope you can find someone that will listen to you and just let you vent, and always know there is someone on here! I would be lost without this site it has helped me so much! Prayers to you! :D
My prayers go out to you also you. One thing ive learned thru this experience is the doctors are there for you not the other way around you have to speak up at your doctors visits and voice your concerns and lett them know what Iis going on with your body if they wont listen find another doctor. I was blessed with the doctors I have (rheumatologist, nephrologist, and my pcp doctors). They listened to me and my wife and when they were searching for my diagnosis they were very aggresive cause my body was shuting down and yeah it took months of testing but they listened and found out what was going on and now im being treated. Yeah I have my good days and also bad days but you have to push them to get that diagnosis so you can live your life. Knowing is half the battle if that makes sense. Im 43 years old been married 20 years my babh girl just left for college in aug. Ive never been sick a day in my life and when all hthis hit at once its was hard tto accept (still trying to figure out why this has happened to but everything is in gods hands what makes us weak only makes us stronger kepp up the faith it will work out in the end.
I won't bore you with my story; only to say I have an understanding of your position. I'm very, very sorry such a young woman is having to go through this but it is what it is & we all know it could be so much worse. If the people around you are not supportive after 4 years you should perhaps stop expecting them to ever be so.
Please seek out ANY support you are able to in your area be it someone to talk to or reducing your commitments where possible.
Keep safe & best wishes to you. Kaz xo
Don’t think your alone. I’m a 41yr old single mother of a 17 yr daughter who is a senior in high school this year. I just got the stunning phone call from my family dr saying all your blood tests came back positive for RA and Lupus.
This is very tiring for me. I’m actually lying in bed with a heating blanket on me while the stupid thunderstorms in KY keep rolling on. I’m a substitute teacher for the local school system and I’m totally warn out after sitting in a classroom. I do get to see a RA dr tomorrow finally. I’m been dealing with the pain in both my hips for about 4 years now and now the pain in in my elbows. My eyes twitch all the time and I’m short of breath. I hope tomorrow the dr figures out something for the pain and my weakness.
I love this discussion! I wish we could all be done with this.
I understand what you are going through. It is not easy. Nobody should go through this and definitely not when you are so young--when you ahve to feel top of the world.
I feel you should gain strength from what a wonderful and sensitive person you are and not expect support from the people around you who do not have your health condition. My daughter is 20. Sometimes I feel we dont understand her and her problems as we dont have her health condition. I tell her to gain strength from within. Try to meditate and do some breathing exercises. Sorry if I am sounding very preachy but I you cannot give up. You have to be strong.
Good luck.
Avanch
Just wanted to add been there, done that. It sucks, I finally stopped having relationship with people who weren't supportive of what I was going through. Its hard but its better for me to not to be stressed out over something stupid they've said. I hope you'll find support elsewhere in your life. This site is a great place for that, we are all in the same boat, we understand what its like to live with lupus.
I have the same feelings and thoughts as Hopeful. I too was always depressed and having issues with body pain, exhaustion, etc. due to the stress of family and friends who do not understand what you are going through. Once I removed these toxic people from my life the better I started feeling. Those toxic people cause stress and stress causes flares (and depression) which, as you know, causes all the pain and exhaustion we feel. I understand that there are some people in your life that are practically impossible to remove from your life and in that case you just cut back your time with them. And depending on the situation, maybe they would understand more if you could print off some of these conversations and/or information regarding the disease to help them better understand disease and to understand that other's with the disease feel the same way. Then again, maybe they are the type that still won't get it and in that case I wouldn't discuss my disease with them at all. I have family who are like high school kids who do nothing but cause drama so I have cut them almost completely out of my life. I only see them at birthday parties, holiday get-togethers or in public now. No more hanging out and being best friends with them. I also have a friend whom I love dearly...she is my best friend. In the beginning before I knew what was going on she was very understanding of my being sick. However, since then if I am having a day that I'm not feeling well and I have to cancel or I just mention that I'm not feeling well I always get the, did you try this, did you try that, are you eating healthy, are you taking vitamins, what vitamins are you taking, are you doing this, are you doing that questions. I feel like I'm being interrogated by a parent for sneaking out at night or something. She suddenly becomes a doctor and I don't need that. I already have a several doctor's that I work with and follow their orders, I don't need another one. I just need a friend that will listen when I need someone to listen. But she believes in holistic healing. It's not that I don't because I do. And I try a lot of the things I read about but I also believe that sometimes medication is a necessity. And again, she's my friend, I need her to listen; not feel like she doesn't think I'm smart enough to research and try everything possible under the sun to feel better.
To Avanch,
Have you done research on the disease to try to better understand it? Are you empathetic when your daughter is not feeling well even though you don't understand what she is going through? Sometimes we can only be so strong before we crack. Depression sets in and you can spiral downhill. Please keep an eye on your daughter and try to talk her into seeing a counselor or psychiatrist if she becomes depressed. You too may want to seek counseling to help you better cope with her and her disease. I hope you understanding I'm not being judgemental. I never gave counseling a thought for this illness until it was brought to my attention from my boss (who is an MD) because he could see the state of depression I was in and understands my autoimmune issues because his wife has Lupus.
I wish you all, all the best. To a happy, healthy as possible, pain free day to everyone!
Jen