Glad to have you with us!
Mary Ann

Thank you!!
-Sharon

I am 43 and already have 3 boys, so I cannot imagine how hard it is for you wanting to have a baby or even think about trying with all this going on. I just wanted you to know that I know exactly how you feel and there are a lot of us unfortunately not many but we know exactly how you feel. It affects me as a mom unfortunately I feel like a bad mom and like I can't take care of my kids the way I should. It affects my job and I feel like any day they're going to say look you're not good enough to work here anymore so they're going to let me go. I sometimes feel like a terrible wife because I'm so fatigued that I pass out almost sometimes asleep as my kids are having to run around. Thankfully my oldest to or 17 and 15 so I don't feel like my 8 year old is all alone. Just know there are people thinking about you and praying for you and all of us with this crap!

@ Shimmer-- Yeah, I think MCTD was definitely part of the reason my wife and I decided not to have kids back when my wife was in her early 40s and I was about 45, though a lot of it had to do with my mother having Parkinson's... and, if I am honest, probably my own drinking, though I will never know how much, or even if, that influenced the course of my illness. My symptoms were partially disabling as a teenager, fever, muscle pains, headaches, and a bad case of pericarditis. They did ease up for a long time, though, before coming back (Blood clots-DVT / muscle pain / fatigue & brain fog ) in my late 40s and 50s. Now I am very stable, using CBD (cannabis oil).

I really didn't want kids that much when I was younger, though I do kind of miss them now. It helps that I work on a college campus and a lot of my friends are younger-- it's not the same thing emotionally, but I feel like I'm giving something to the next generation. That helps a lot with the feelings of worthlessness that can come up with a chronic illness.

@ Prilly -- The work thing was terrible for me in my 40s. I did excellent work, but my productivity was only adequate; my headaches and brain fog were out of control, made much worse from staring at the screen all day. And having to take time off-- even without hitting the limits of a sick leave policy-- just put a bull's eye on my back at work. They hounded me for years trying to get me to quit and I stayed as long as I could, though I drank my way through most evenings. Somehow, I got through grad school in my 50s, quit drinking, and now I work full time as an independent contractor. The tax bite is brutal, but it is SO much easier to face a 40-45 hour week if you can take naps in the late afternoon! Hang in there, and think about part-time work, or freelance work, where you don't have to punch a clock. For me, getting to work on time is not a problem, and I still get up at 6:30 AM to go to work, it's the late afternoons that are deadly.

Prilly-
Thank you so much for your kind words. It really does help so much to hear from people who understand what I'm going through. It's crazy because my whole life I dreamed of being a mother... I wanted nothing more. Now, I think I'm honestly at the point of thinking the best thing for me would to not have kids. It's crazy how your life sometimes goes a completely different way than you thought it would. I can't imagaine carrying around a crying baby when some days/nights I can hardly stand up or even walk. Makes me really sad but it's prob best. I agree with you about the job situation. I feel every day that I could let go. I try so hard but with my pain and fatigue, they prob think I'm not living up to what they think I should be. Also, I get sick very easily and while some people can go to work while sick, I always seem to get so sick I can't function. Hopefully they continue to be understanding. Thanks again for hearing me. I wish you all the best :)

katalyzt-
Thanks for the comment. I def think MCTD is the reason we prob won't have children as well. How can I give my all the raising my child when I can hardly take care of myself some days? I think I will miss it too over the years because I've always dreamed of being a mother but I'd rather regret not having them, Then regret having them because I can't be the best mom I can be. I don't have the patience and tolerance I used to either because I feel like crap. Thanks for understanding. With you all the best. :)

I just got got my labs back today. I'm brand new to the group. I'm 30 and can't trust my wrist to pick up a newborn. I know what your going through and just wanted you to know.

Re-reading this thread after Hannah's post, I'm realizing how young you guys are-- and late 20s and early 30s are sometimes the period when folks go into remission. I know I did.

Some of us have noticed that the worst flareups sometimes happen after hormonal changes-- adolescence, birth of a child, menopause or the long, slow slide of andropause. This is correlation, not causality-- we don't know if hormones are actually related to flareups, it's just a crackpot theory at this point.

But... if it were true, I guess that would suggest that there are two sides of the coin. One is that having kids sometimes makes symptoms worse. But the other is, if you're in a long remission, maybe that's a good time to have kids. Sometimes, the hardest phase of this illness is the first major flare up. I remember my rheumatologist saying after my first bout of pericarditis that this was probably the worst symptom I would ever have, and that turned out to be true.

I guess all I'm saying is, just be open to the possibility of remission. I know that makes things very hard to plan. And I'll always wonder what it would have been like if we'd made a different choice. I don't think I have regrets, exactly-- but it's a question that haunts me. And again, I'm glad I have a job where I can be around young people a lot.

I think that none of us knows what the future will bring and we should try to live out our lives to their fullest. This means, if you want a child, go for it. Dont let this disease stop you from trying to have the life you want. I was quite ill as a child but went into remission for years. After the birth of every child, I did have some issues but was able to get back into remission. At age 53, I really started having issues. I recently went off steroids that I have been on for 10 years. The pain is pretty bad some days. The Rheumy thought I was in remission because my blood work was good. I think the steroids were holding it at bay. But I was able to have my family and they are wonderful help to me. I am glad I did that. I know many of you are having more issues than I did at that stage in life, but you dont know what your future holds so dont discount that it could be better.
Mary Ann

Hi there
I joined today and ur post was first one I read.
I am 32 years old mother of two. I do feel like i am 70 years old women and looking after baby and kid is just too much for me. My husband constantly takes days off from his work to take care of us. I couldn't even get up from floor when my second baby was only 6-7 months old as i lost my muscles all over my body. I couldn't feed the baby I couldn't change her nappy. But since I took methotrexate my life was completely changed. I m still very weak but didn't lose any muscle since and slowly get my energy back.
If you have family friends around you having and raising kids wouldn't be too much problem. I am a foreigner living in Australia and all my family members are in overseas. I have to deal with absolutely everything on my own but still managed somehow and my second baby is doing great even she is so tiny for her age.
I attended once this lupus and sjogren support meeting held locally in order to get some help and make friends. It was bad idea. I was only one young...all the other 10 ladies were from 65-75. I was sitting betwen them with my 12mth baby..feeling so uncomfortable sad miserable etc etc
Their disease started when they were in their 50s.. and mine started too young...I cried in the car all the way home. I felt it was so unfair.. I am too young to get such nasty disease like this.
i hope We could support each other ..and share some experience.
Cheers :)

I hope this group is a better space for you, SugarFree, and we can provide a better experience for you-- that sounds like your last group experience was pretty rough.

I got this illness when I was 16, it was first diagnosed as Lupus, and I had the same feeling-- like it was an older person's illness.

Now I am an older person-- 59-- which is something I did not think I would get a chance to be. Age of onset is NOT predictive of the course of this disease. With three very conspicuous exceptions, my symptoms have been mild. I am happy to report that I am neither sad nor miserable.

I am glad you posted; I do not know many people with this illness who are older than I am, which is scary in a very different way-- like, it would be really awesome to hear from someone out here who is maybe 78 and says, "Nah, it's not so bad having this illness at 78-- a few problems here and there, but I try to live a healthy lifestyle and I'm basically okay."

If that person is out there and reading this post, don't be shy! Speak up! MT and I seem to be the oldest folks here now, so we're getting a little lonely! (MToennis is the greatest. We've known each other here for many years.)

But what I can tell you is that 59 years old with MCTD isn't that bad. I'm getting a lot of exhaustion these days, and it's been 85% humidity in Los Angeles, so yeah... the illness wakes me up at 5:00 or 6:00, I get out of bed maybe the second or third try, and I crawl downstairs... very carefully... to get my CBD oil and take a leak. Wake up at around 7:45, and I feel noticeably better-- still plenty of pain, but not like I'm going to fall down.

Still felt crappy at 9:00, but a bit better... paid a few bills, ate breakfast, got to work at 1:30, finished work at 7:00. My eyeballs feel like they're coated in sandpaper, and I did feel like I was going to fall asleep several times today....

But I didn't. This was one of my worst days, and it just wasn't that bad. On another day, I might swim half a mile, or go bodyboarding for 20 minutes, or just feel pretty much normal except for a lack of stamina and tiring a bit more easily.

I'm also glad you posted because it's useful to hear that Methotrexate is actually working for you-- it doesn't for everyone-- so it's really, really helpful when you check in here and tell the rest of us how you are doing! And that you're a mom and making it work!

It's fine to gripe about your symptoms here, too... it was just really nice to hear your story today.