Newly diagnosed SLE
I'm a 23 year old mom of a 7 month old little boy. I was newly diagnosed with a very aggressive form of Systemic lupus and membranous kidney disease about 3 weeks ago. I'm trying to educate myself the best way possible on this. I'm at my wits end with all the med changes, fluid retention, hospital stays, side effects, and multiple opinions. I know this is my new normal but I'm going in the opposite direction and not getting better. I'm hospitalized for the 2nd time in 3 weeks and I've been here going on a week, the first time I was in it was for 2 and that was the initial diagnosis. It has attacked my kidneys severely and infiltrated my lungs to the point of having an o2 of 90 at only 23 yrs old and sometimes my lungs are so bad I feel like im drowning. My blood pressure is sky high from the protein in my urine due to my low kidney function and 3 bp meds haven't brought it down. I can barely move and I've been healthy my whole life. I basically am just looking for some reassurance that it WILL get better. I would like to see if anyone else as young as me or with the same severity of the disease has ever felt "normal" again. I just want to be healthy for my son. I AM thankful to be alive and I remind myself that every day but it sure does get lonely in this hospital bed and any support or education would be much appreciated!
Thank you so much!
Congratulations on your sweet little boy. I cannot imagine what you must be going through right now as a young new mother who suffering so much. I can understand that you are scared and it does help to reach out to others who know what you are going through. I am glad that you found the group. I'm sorry that you need to be here.
Thank you so much! it's good to know people actually respond to these. I feel like I can't be completely educated through text books and readings I just need to find out what worked for other people and how they go about living normal lives again.
Wow - you sound remarkably positive, given what you are going through. I am so, so sorry this horrible thing has been causing you so much trouble and stress. I hope you have supportive family and friends around you to help and love on your precious son....you know, even though I am sure it's so hard to be away from him this much, the blessing is that he won't remember your hospital stays - and hopefully by the time he is forming memories you will have things better under control and won't have to be in the hospital so much!
I have not had to deal with the same things you are, but my own experience and what I have read about here and on other websites leads me to believe that often the first year is the hardest - lots of tests, diagnoses and recommendations for treatments that go back and forth, trying one medication after another (some of which will work and some that won't...), and finding some kind of balance.
Plus, of course, you are still dealing with the physical and immunological aftermath of a pregnancy, which is famous for making Lupus more difficult for a while.
In other words, I have hope that things WILL get quite a bit better for you! These diseases are SO complicated and specific to the individual, they can be very hard to treat. make sure you trust your team of doctors, and communicate with them well. Many of us keep diaries of symptoms, how we feel, when we forget to take meds or take them late (yes it happens to all of us!), what we eat/drink and how it seems to affect us, the daily ups and downs, etc...it's way too easy to forget things, and having an accurate record can really help your doctor. It can also relieve a lot of worry, because you know you have a good record of things, so you can kind of let them out of your mind instead of worrying about them so much. Keep track of things, and then let your doctor figure out the puzzle of how things fit together.
Do lots of research and allow yourself to grieve the loss of your "old normal" while you feel your way into the "new normal". And DO have faith that there is always hope...new medications, new combinations of treatments that will fit you well and help you, etc. Don't give up on maximizing your health, and keep those conversations open with your doctors. Deal with setbacks, and look for improvements.
And my goodness - hug that little guy and absolutely wallow in what a miracle he is!!! Honestly, much of the strength I draw on comes from seeing my beloved daughter's face, spending time with my animals, etc. Even when dealing with lupus, there is much of life that is good and sustaining.
Best of luck - welcome to the community - and we look forward to getting to know you better!
Thank you! I'm actually feeling much better with your replys and reading other threads on here. It feels good to know i'm not completely alone even if most of the people on here are much older than me i'm sure they've already been in my shoes. I squeeze the little one any chance I get trust me! I may get to leave the hospital tomorrow too so that's good news. It's just trial and error with meds. I am attending a lupus conference in Boston in april and that should also help. I'll try to relay any info I can. It should be beneficial to someone at least! I am not well enough for a dog yet but I agree spending time with your animals are some seriously precious moments. I'd rescue them all if I could. When I know im well enough I will be surely adopting one! The journal is an excellent solution/idea. I do journal already but not about those things and I think that would benefit me and help put my mind at ease. I hate trying to remember how I felt a even a few days prior to seeing my doctors. Thanks so so much for all your words. You're wonderful people.
hi and welcome,
i am one of those "much older",
but there are unfortunatelly also some much younger than you who come here.
i hate hearing tis desease effecting young ones !!!!!!
a good way to educate yourself isthrough our threads.
please use the search function to lookat some of them.
they are our practicle experiences with lupus.