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Sjogren's

Jan 11, 2015 7:22 PM

I was told to never have children because I am 18 and I was recently diagnosed with Sjogren's syndrome. I was completely fine up until this past summer. They think I also have lupus. My mom is disabled with lupus, rheumatoid arthritis, fibromyalgia, three herniated disks, a different back problem, and a few other issues that I cannot really recall. She's had more surgeries than I can recall. She's been sick for almost as long as I can remember now. At this moment, she is in the hospital. I'm scared for her. And, selfishly, for myself. Being told to not have kids hurt me a lot. And I think I'm becoming depressed. My joints hurt too much to really exercise, and even though I'm eating healthy I am still gaining weight. I love my mom, but I am terrified of turning into her. I want to be a doctor, not see them. I don't even know why I'm posting this at this point. But I think I just needed to write it down.
Thanks for reading.
❤️

Jan 11, 2015 7:49 PM

I'm sorry you have been dealt these cards... Although I am way older than you (52), I can relate to you in that my mom (83) has my similar health history and when I realized I was following her footsteps I was far from overjoyed. I have learned from her though in that mental attitude really helps. She sees the glass have empty and I see it half full. It really makes a difference I believe in one's outcome. No one can blame you for your feelings at all. But the fact that you still want to be a doctor--bravo to you!!!!! Perhaps you can help today's scientists find a cure for these autoimmune and chronic diseases. I'm fairly new to this site and really enjoy using it. It helps me feel less alone in this aspect of my life. Not many people who aren't going thru it truly understand because we look so 'normal'. Please keep using this sight. Hugs to you 👭🌻

Jan 11, 2015 8:50 PM

Welcome biomajory1! I ditto sandibeach's comments completely. Im really sorry you're facing these issues so early in life. You'll have good & bad days ahead. Just take each day, each moment, each decision, one at a time. Your mental attitude is the key to handling whatever comes to stay on top of it, or giving in & giving up to become overwhelmed by it.

Was it just one doctors opinion about having children, or several? Or was it not a doctor at all? It doesn't really matter. What matters is how do you feel about having babies? I'm 53 also, and knowing all the medical issues I've struggled through, I'd still have had my children. My issues started when my youngest was a year old, and i was 27, so there were changes I had to make due to my limitations. Pregnancy nor childrearing is easy, whether you're 100% healthy or not. Its, again, about your mindset, your determination.

Continue your education and become a doctor, to open the eyes of other doctors and scientists, and who knows what you could achieve. Just know that its ok to hurt, be depressed, be angry, and vent on here. Its ok to laugh, to be enthusiastic & encouraging too. We're all here to support each other, because though we may not all have the same exact problems, we truly understand, and we care. You'll also find others near your age on here.

My personal advice is, no matter what anyone tries to convince you to do, follow your heart, your instinct. You know your body best. Get second & third opinions if needed to feel right about your decision. Personally, I pray for God's guidance. And I will add you to my prayers, just as I have others on here. God bless you! ☺

Jan 11, 2015 9:03 PM

Thank you both so much for commenting. I really appreciate your advice and I hope that you both have some more better days ahead. I used to see a psychiatrist for a depression problem (I was on medicine that gave me suicidal thoughts, and if I hadn't seen one I wouldn't be here.) I feel sort of stuck right now, but I am away from home in college and I cannot add another doctor to my list of doctors. I was told to not have children because apparently, since having Sjögren's syndrome at 18 is rather uncommon, most people who have Sjögren's and give birth end up having a child with severe congenital heart defects. I am not sure if I want to knowingly put a child who will struggle through every step of life into the world, nor am I sure I would be able to handle losing a child. I couldn't live with myself knowing that ignoring a doctor's recommendation would be the reason I was watching my child die. And it makes me even more upset knowing that I have a choice. Some days I wish I was infertile just so I could honestly say that it isn't my decision.

Jan 11, 2015 9:26 PM

I understand what you're saying. Its a decision that will take a lot of personal soul searching & also research. I would advise a second opinion with a GYN who specializes in difficult pregnancies; they would (in my opinion) be better qualified to answer your questions and concerns. But you are young so there is no reason to hurry the decision.

I was placed on cymbalta for my fibromyalgia & depression. It caused major suicidal & depressed thoughts. I have a genetic defect where I don't metabolize medicines or vitamin B, meaning I have few options for medicinal help. But I am seeing a psychologist & on an old school antidepressant. I think you could probably check into possible college resources to counseling and/or medication, or possibly through your county health department. Good luck & best wishes finding help for the depression. We're here for you, but if its due to a chemical imbalance you'll need more than just us.

Jan 12, 2015 12:09 PM

I would definitely see a few doctors before making a decision. Firstly a GYN who specialises in difficult pregnancies and if you can find one, one that specialises in fetal (baby in womb) heart defects.
Then I would go and see a Paediatrician who specialises in congenital heart defects to find out what the treatment options, detection rate, life expectancy and mortality (death) rates are.
Then you could go to someone or soak to the GYN about screening for complications early and throughout. IVF or surrogate birth are other optics or adoption. There's always a way to have a child

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