Fiance diagnosed with lupus

posted 3 years ago in Emotional
Post # 2
Member
42460 posts
Honey Beekeeper
  • Wedding: November 1999

franklyn:  My niece has lupus. She had a pretty rough first year but after the meds got her flare- up under control she has lived a pretty normal life since and is now off the steroids.

Post # 3
Member
1622 posts
Bumble bee
  • Wedding: October 2014 - Cape May

I wish I could offer some helpful advice but all I can do is offer lots of hugs. Hang in there!

Post # 4
Member
266 posts
Helper bee

Very tough situation, I know you’re stressed out about using some of your savings but on the bright side you did have savings to use and didn’t have to go through trying to find money you need on top of everything else you’re dealing with.

It’s great that your FI is getting better on the lower dose medication and hopefully things will get better.

Hugggssss

Post # 7
Member
42460 posts
Honey Beekeeper
  • Wedding: November 1999

franklyn:  I’m not sure what type of lupus. She is a college student and is back to school and working a part time job.

Post # 8
Member
1466 posts
Bumble bee
  • Wedding: August 2014

franklyn:  I know someone who has lupus and I think my best advice from knowing her is that you need to be prepared to expect the unexpected. Flare ups can be unpredictable and that sucks, but I think it helps to learn to live with it. It sounds like you are in a big transition right now, and that can be really hard. It also might be an opportunity for growth and development in your relationship, as it has been for my friend and her SO. 

As far as the money: Not sure how this sounds to you, but I read a story on Offbeat Bride about a couple in which one had an accident and lost a finger. They used their wedding money to cover hospital and rehabilitation and simultaneously started a fund asking family and friends to donate to cover the costs. They were not expecting it, but people donated enough money to cover all the costs. In the end, they felt that it was amazing how everyone stepped in, and it became really important to them to have a party for everyone, that everyone basically helped pay for. I don’t know if I am making any sense, but it was a great story about community. Maybe you could consider doing something similar. 

I am really sorry to hear your news. I think it can be really hard to support your partner when they are not doing well. If you run into hard times with that, I think the best you can do is be gentle and patient with yourself and with your partner. Give yourself permission to feel what you are feeling. It can be really challenging at times for some peeople. I hope for the best for you!

Post # 9
Member
135 posts
Blushing bee
  • Wedding: May 2015

I have SLE lupus, but it has never been as severe for me as it is for your fiancé.  My mom actually has it too, although she had a few flare ups in her early 20s, she’s been pretty symptom free since.

I was diagnosed about two years ago when I went to the doctor to find out why I was so tired all of the time.  The main effects on me have been the constant fatigue and arthritis.  I have arthritis all over and I’m only 26.  It’s the worst in my hands, but also affects my jaw, my back, my knees, and my feet.  I’m also hyper sensitive to the sun (my doctor tells me I’m allergic to sunlight, but that sounds a little ridiculous).  I know there are certain triggers that make my symptoms worse, like stress or too much sun.  I used to take meds for it, but it got to the point where I was on one med to do one thing, except the side effects were toxic to my body and I had to take a different medication for the sole purpose of counteracting the side effects of the first.  I decided that it wasn’t worth it since my lupus is usually mild, sometimes moderate.  I’ll revisit that later on if needed.  One of the most frustrating things for me is that I have always been a very active, silly, entertaining, energetic person and now I feel like a senior citizen and I’m much more mellow simply because I don’t have the energy.  It makes me feel boring sometimes.  My memory also sucks now.

The main concern for me with it now is when we start TTC next year.  My doctor told me that it’s making my eggs age faster so it might take a while to get pregnant, and then I have a higher risk of miscarriage because of it.  But it might be fine, so it’s kind of luck of the draw there.  Luckily we would like to adopt, too, so even if bio kids aren’t in the cards, we already know we are open to that option.  I’m nervous that there will be times when I’m feeling bad and not able to keep up with our future children, but I know that Mr. will step up for me if needed.

Good luck to your FI and I hope he feels better soon.  I highly suggest to look up the spoon theory.  It’s really helpful in understanding how your energy level works to someone who doesn’t know how it feels.

Post # 11
Member
369 posts
Helper bee
  • Wedding: May 2014

My BFF/Matron of Honor was diagnosed with Lupus in 7th grade. It was a really scary year, she was in an out of the hospital. Once she was diagnosed and found the correct medications, though, she was relatively stable. She has had 3 total flare ups since then (she’s now 29). The flare ups were scary- all of them required hospitalization. BUT she came out stronger and healthy. She was probably in the hospital about a week each time.

She is a teacher, holds down her job just fine, and just had a BEAUTIFUL, HEALTHY baby boy! Does she hurt some days more than others? Yes. Does she deal with some things that maybe others don’t? Of course. But 95% of the time she’s happy, healthy and 100% functional.

I’m confident that you and your fiance can live a happy stable life 🙂 Lots of prayers.

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