my wife has just been diagnosed with lupus

[Indiana Mike]

It ( diagnosis ) started with a facial rash that would not go away with multiple methods of treatment .

She finally found a doctor who put together her other symptoms she has suffered with for the last several years , did the tests and confirmed it.

Turns out most likely the tanning she did over the winter brought it out on her face. I feel as if this brought an underlying condition up front so now she can begin proper treatment .

She , and myself , are both really upset over this as we are moving into the second half of our lives , Things are getting easier financially and she is close to getting a second degree to start a new career unrelated to what she has done up till now.

From what I have read this can be a slow but certain death if it takes the path of destroying organs and or the nervous system.

I have struggled so hard to get to a point when I can slow down and glide for the rest of this life and now I fear the unknown consequences we may have to endure. I have been married to this woman for 19 years and she has put up with a lot of my sh*t and stayed the course. I have always felt she would outlive me . she may not after all.


life is not fair

if you want fair

go to the fairgrounds.

[fenderhutz]

Honestly, I have a family member diagnosed over a decade ago with Lupus. No real issues other than some fatigue every once in a while, and she isn't on any kind of steady treatment for it. I remember she had some mild Pleuritis as well at one point.

Remember the internet is a collection of worse case scenarios, take it day by day.

I wish your wife well.

[Humblerumble]

Hey Mike,

I am very sorry to hear about your wife. On the positive note I knew a lady that had lupus for many years 20+ before passing and I a can't say it was lupus she passed from. I have another friend whose wife has had it for many years with minimal effects and I pray the same for you guys. God Bless.

[bradjonesbass]

what they both said... It's most likely a very livable condition and she will probably still outlive you Take it a day at a time.

[jmcgliss]

Yes, it does seem like cases differ. My mom became symptomatic in the 1950's after the stress of childbirth, but she is 81 now. The condition was not properly diagnosed until the 60's so she went through some real trials at first. Your should shop doctors to find someone who is up on the research, the meds, and who codes your wife's records properly for insurance purposes.

llinois finally passed a law allowing window tint (with special license plates) so we can limit sun/UV exposure and get her out more. Check your secretary of state or DMV for what is allowed.

What else...my mom has always had to pace herself, being active in mornings and evenings with an afternoon nap. That, and supplements for her joints seem to be a key factors.

If there isn't a local lupus chapter near you, I'll recommend the chapter in Western NY...they were one of the first.

[Ben Lesser]

There are varying degrees from what I understand. My mom has lupus, and has had it for a number of years now. For the most part, it hasn't really crippled her quality of life (although in conjunction with her arthritis, some days are better than others).

[superiorpine]

Mike:

You've taken the first step in living with a chronic disease. Seeking support. Mo' power to you and yours. Although you probably already have done this, check out www.lupus.org. There may also be support groups or a state organization in Indiana. While neither of you may make it to 100, you both can still enjoy life in the mean time.

[machine gewehr]

Sorry to hear about that Mike,I hope it'll be all ok and your wife will keep up naggin and outlive you just like any other woman out there.

[bongomania]

Just pitching in one more story, I know a woman with lupus who's had it for several years now, and her only symptoms are fatigue (not enough to keep her from working) and rashes. Annoying and scary, yes, but entirely livable. Here's hoping your wife's condition never goes past the "annoying" range, and she can put up with your **** for many years to come.

[ryco]

Sorry to hear the news. It's hard and disconcerting when your mate isn't feeling their best!
Like the others say; take this one day at a time.
Also, be there for her and take care of yourself as well!
Be strong! peace & prayers to you guys

[dancehallclasher]

Originally Posted by TheDarkReaver

for some reason I used to think lupus was like a werewolf disease.

That's reasonable, it was so named BECAUSE people thought it was like a werewolf disease.

[werbo1]

my prayers are with you.

[Indiana Mike]

Thanks everyone , I'm not looking for pity but had to vent as my wife has asked I not tell anyone close to us until she is ready .

she has had fatigue , pain , and some neurological problems for the last three years or so . She has underwent many tests for these symptoms and has been told it was this or that or it was in her head . There were times I thought it was in her head , as in depression etc...

It's good to finally know what we are dealing with .

[Bob Clayton]

am i the only one who thought of the mitch joke?

anyway, i wish your wife well.

[kesslari]

My prayers are with you and your wife and family.

[Brad Barker]

wish you and your wife the best.

[ryco]

Originally Posted by Indiana Mike

Thanks everyone , I'm not looking for pity but had to vent as my wife has asked I not tell anyone close to us until she is ready .
she has had fatigue , pain , and some neurological problems for the last three years or so . She has underwent many tests for these symptoms and has been told it was this or that or it was in her head . There were times I thought it was in her head , as in depression etc...
It's good to finally know what we are dealing with .

Don't think of it as pity -- it's support for a friend who is facing a huge challenge!

I know where your coming from. A couple of years ago my wife was not acting herself; personality change, loss of interest in all her projects (teaching, church), not talking (which was really weird for her), ambulatory issues (from someone who walks & hikes everywhere), major depression (to the point of seeing a couples counselor) and finally seizures. She would not seek medical help, so I had to reach out to a friend (my drummers wife is a retired nurse) who recommended getting an MRI.

Took her to the clinic for an MRI and the nurse pulled me aside and said you have to get her to an emergency room - now! Turns out she had a brain tumor the size of a golf ball. Was successfully removed within 24 hrs. Hadn't spread, contained and she was out of the hospital in four days. Goes in for yearly check-ups incl MRIs. Found a small growth again last year. Was removed and all is fine.

Thankful to have insurance which is by far our largest monthly bill @ $585/mo. Total costs of surgeries and care has been well over 100k. We have a $5000 deductible which doesn't seem too bad now.

The reason I'm telling you all this is as a supporting mate all you can do is love and take care of her the best you can. The best way to handle this is to ask for help and reach out for support from ppl who care about you and your families well being. Nothing wrong with that! Also to get as educated as possible about the medical condition so you're not operating from fear, but from a position of knowledge. Talk to her doctors and get info off of the net on her condition. And just take it one day at a time. Try and stay positive, even though it may be difficult some days. Hope for the best.

Hugs and kisses go a long way too! Good luck to you guys! Hoping for the best!

[BullHorn]

What the ****, it's never lupus.

Damn, man, that sucks. :/

[doctorjazz]

Originally Posted by Bob Clayton

am i the only one who thought of the mitch joke?

I didn't, but I immediately thought of House and felt like an *******.

To the OP, wishing your family well.