Hi im pretty new to this lupus thing and honestly it has really messed up a lot for me… my doctor told me that I have lupus erythematosus (systematic) and that he caught it early enough to where I don’t have to take tons meds and that I can continue singing and music but I feel like I was lied to because im taking over 6 different medications, I cant remember simple things like what I learned in school and sometimes I forget my own 5 year old daughter’s name! I literally flare up every 2 weeks and I can’t sing any more because im always horse and my breathing is off making it hard to control when singing things like arias and operas…I cant even practice piano or guitar as much because of all the swelling! This is really getting out of hand! I cant do what I love because it hurts and the sad part is that my family seems not to care about it… they just keep going… they joke about how I walk (limp) and groan while im having a flare up and when I say I dont feel good they say well we all are sick… I tend not to talk about having lupus because I dont want to be a burden on my fam and the few times I try to talk my family ignore me and talk about there issues… its just so much going wrong in my life right now and honestly I’m becoming a bit depressed… I just dont know what to do anymore… I feel really lost and alone…
Have you talked to your doctor some times it can take awhile to get the right combination that works for us. I was on a medication that caused me some memory problems and had to stop taking it.
You are not alone in your journey. Depression can be a serious problem and needs to be addressed. Their are counslors or therapist you can speak with. Keep us posted on how you are doing.
Awww hon, I'm so sorry! I understand just what you mean, if not quite to the same degree. I write a lot, and my brain fog and pain completely took my muses away. (Still does often, just less often than before.) Additionally, I was rather distressed to learn that my body just wasn't going to put up with riding horses any more either. I'm hopeful I'll be able to eventually get that ability back, but for now, I have to err on the side of taking care of myself.
Unfortunately, it's hard when a doctor says something and we discover it isn't correct. Lupus is cruel and can change its mind at the drop of a hat. Slow disease progression can turn fast, and fast progression can slow down. I'm terribly sorry to hear that you're taking more meds than you would like. I think most of us know how that feels. ::hugs:: I kinda torture myself by tallying how many pills I take per week. It isn't as much as a lot of folks, but it sure is a whole lot more than I ever thought I would or ever care to. No fun. The positive side of that, though, is that with how active your Lupus seems to be, at least it sounds like your doc is trying to find the right 'cocktail' of meds? My rheumy is often says he's attempting to find the right mixture of this and that so I can live as pain free as possible. I sort of pity the docs, because they can't change our meds as swiftly or as much as we'd probably like them to. Right now I'm chafing at increasing one of mine (slowly) when I'm fairly certain that even at max level it won't be enough. I want to jump the gun, get this part over with, and try adding something else, but he's constrained by doing it the RIGHT way. ::grumbles good-naturedly::
As to your family... I think most of us feel your pain in that too. My dad was ready to hop and plane and move here in-town with me when I got my diagnosis. (BAD IDEA!) But my parents have gone from that sense of urgency to now they never ask about how its going, and I think stopped researching it after their initial fear wore off. They seem less concerned about it than folks I see on a weekly basis, which sometimes hurts. At least they are a distance away, though, so it doesn't impact me as much. With family you interact with constantly, it can be a challenge. Only you can know how best to handle helping them understand, but I thought I'd toss a couple ideas out. Honesty is always a good policy, if possible. Suggest places they can go read about it, or print off information sheets to hand them when they brush you off. I also highly suggest spoon theory to help educate friends and family. It's a friendly sort of story that can give them an insight into life for you.
Also keep in mind, Lupus might be scary to them too. By not talking about it, they can feel like it isn't such a threat and a pressing issue. Denial is more than just a river in Africa. Sometimes they will associate something they face with your Lupus, which allows them to give the disease more defined and familiar parameters, as well as making it appear less scary. And who knows, some folks might feel like they are HELPING by refusing to talk about it (I'll just make sure she doesn't have to endure talking about it with me... or I refuse to remind her of it by talking about it). We are very complex beings, and though I know it hurts to be brushed off, there still may be love behind their actions.
::hugs tight:: Hang in there hon. Your diagnosis is new still, and it really rocks our worlds to have to face something as life-changing as Lupus. This is an awesome place to come and vent and share with folks who understand, who sympathize, who will be there for you. Never give up. We're right here with you through it all!
(And I'm sorry for writing a book here! Yikes!)
Thank you @purplebutterfly for the advice…I try to contact my doctor as much as I can but it’s getting hard for him to squeeze me in every time I talk about pain… I’m trying to be strong and patient for him but this pain is not a walk in the park smh im just really happy that I found somewhere I can vent and talk without feeling like im nagging.
Lol you’re fine! Talencia I like hearing about other people’s journeys and fight through lupus! It makes me feel like im not crazy or being a hypochondriac… thank for all of the love and motivation too makes me feel like maybe I really do have a chance at following my dreams and maybe even feel better before my wedding day in November/ December… yeah my fiance and I still.haven’t agreed on a date we just know where we want it lol
Hey Taylor, welcome to this community. There's alot of people here who can relate to the things that you are going through and will always be here for you when you need people to speak to, so I hope this makes you feel less alone. I can definitely relate to you--when I was diagnosed I had to stop playing sports, mind you it what I grew up doing. So to go from playing every day, to not being able to play for some time, and to not be able to play at the competitive levels that I dreamed of, pretty much broke my heart. But like 2 years later when every thing calmed down a bit, I was able to play again, somewhat. So just try to be patient with it. As for your family, I'm so sorry to hear that! Just make sure each time they make jokes about what you're going through that you tell them how it makes you feel; see if you can find things to help them understand better what you're going through, like this site, other websites, invite them to your doctor appointments, etc.
Hi Taylor, I know this is hard for you and truthfully you’re not alone. When I first had lupus I was 17 it was under control and quite mild but after my first year I began having strong brain fog, IBS, and plenty more symptoms that took over my life. I had to withdraw from college because my IBS was so severe I couldn’t go to school full time like I had planned. It’s taking me years to get my drivers license because my lupus fog was making it so hard to concentrate and retain anything while learning how to drive or anything for that matter. And I’m only 19 while I am supposed to be putting my foot out in the world and getting a safe good start I felt like lupus just pushed me right off the cliff.
Also I am the only person that I or my family have ever known to be sick we were very blessed I thought. But then I got sick and all of us didn’t know how to coop. I felt like my disease hurt my mom spiritually and religiously it hurt her and she didn’t know how to react. She would yell at me for feeling sick and throwing up and etc. At one point we got in a fight and I never came back home. For a long time I blamed myself for breaking the family up I blamed myself for having lupus…
But then lupus helped me realize that I have to stop living for others and live for myself. I had no choice if I didn’t start taking care of ME I would’ve died it’s depressing and stressful to blame yourself for your family and friends reactions and feelings. And lupus and stress are not good friends at all. We have to take care of us first. I would sit your family down and make sure that they know how serious your condition really is because it is serious.