Can you keep yourself "well" when the rest of the family has a cold/flu

[aussie mum]

Hello everyone,
I'm hope that all your experiences can help.

My 18 yr old daughter was diagnosed with SJS (Lupus?) just over a year ago and unfortunately hasn't been able to tolerate Plaquenil or Prednisone. She really hates that she has this disease and really hates that she has to take any medication at all. Lately she has stopped taking her multi vitamins, iron tablets and b12 shots. I think it an acceptance/control issue (she is 18 so is an Adult now), but like most mums - I am extremely worried about her.

There has been some very sick people in Sydney lately and now as she is currently studying for her final high school exams which start on the 17th OCT - the rest of the family have caught a nasty cold/flu.

What can we do to help her?

This year has been so stressful. She was sick on her 18th birthday, sick at her trial exams, sick for the end of school formal and now sick as she prepares for her final exams. It's just not fair!

Thanks for listening,
Aussie Mum

[Linda196]

I can sympathize, but I'm afraid I don't have any magic answers. Once our kids get to be adults, they have the right to make their own mistakes, too bad they don't realize that they are still our babies, and it's still our job to mother them.

Unfortunately, some people with autoimmune disease are under constant attack from bacteria and viruses, even if they aren't taking any immunosuppressing drugs. How to avoid getting sick is a continual problem, and about all I can suggest is being very vigilant when it comes to handwashing, avoiding exposure, and keeping distance when in the presence of someone with the flu or a cold (the same things everyone should be doing, AI or not). If she could be talked into continuing any of her medications, maybe the multivitamin might help.

Hopefully she'll soon decide to exert her personal control by taking more responsibility for her health, and doing what she can to optimize it. She's sort of between releasing your control, and assuming her own, and while completely natural, it's a very difficult time for all concerned.

[Seeker]

G'day aussie mum, The only thing I can suggest is to try and keep her from over studying.  Have her take frequent breaks.  Drink plenty of fluids.  Tell her how proud you are of her and how much you love her.  If you can tell her a few jokes and make her laugh that will help.  But be sincere.  That's the best medicine I can suggest.

Seeker

[pudmott]

Hi from Newcastle Aussie mum,

You have a bit of a tough pickle. Im not a mother so i really can't speak from experience but just be there for her. She has to make her own mistakes just let her know that you are there. its just unfortunate that her mistakes may have bigger ramifications than most health wise. Being 18 is tough on it own without having to accpet an illness. Usually children with illnesses have accepted it by 18 but to be diagnosed as a late teen when things are just beginning to happen must be hard.
Are you/is She a member of Lupus NSW? There is a great supprt group for young adults within the Lupus group and its for all AI's not just Lupus. If you want any info don't hesitate to PM or email me and i can give it to you. Maybe she might find others in her situation and some support and relaise that the meds are all part and parcel of this thing we have.

Wish her goodluck for the HSC. I still remember doing mine, i was so glad when it was over.

Goodluck for you too. Being a HSC mum must be tough too.

Pud

[Cheryl]

Hi Mum,
   I can imagine how concerned you feel.   I agree with the others that you should just be supportive now, instead of hovering.   She may not make the choices that you would choose, but she will weather this and learn from it.   
   To ease your mind a little, I'd like to say that some of us with autoimmune disorders have great resistance to the "bugs" that people around us get.   I'd better knock on wood here, but right now I have 9 students (from my class of 25) who are home sick with a virus.   I typically don't catch these bugs at all.  Perhaps your daughter will develop strong immunity, too.   
   Know that there is a support group here for both of you.   I hope that your daughter gets the help she needs and is able to feel good for a long healthy life!
Cheryl

[wen.uk]

Hi Mum

First it must be so hard for you to see your daughter battling an illness like this, my daughter was very poorly too in her teens and I know just how much it takes out of you.  All you can do is give her lots of reassurance, understanding and hugs - her not taking the medicines maybe her little way of rebelling against it and after she's done that stage may be more inclined to take them again.  Hang on in there, I hope she does well in her exams.

Wen x

[Tamik]

Hi!
I can completely relate to your daughters thinking....   Maybe take her to a naturalpathic doc who can give her hope and positive reassurance -  made all the difference for me!  I refuse to take prednizone, plaqinal ,and the other heavy hitters too.  THrough my natural path, I found out I am suffering from malabsorbtion of my nutrients. He did food allergy testing and found out I am allergic to milk and eggs - which is in evertything I had been eating! I m now on mass doses of vitamins to get my levels up to normal.  My rhuemy was concerned when I showed her my vitamin levels and how low they were.  THen I showed her my  food allergies results and she said that solved the puzzle!  My digestive track cannot absob nutrients well if it is always inflamed because of what I eat!  She also said that food alergies can cause arthritis type pain and major fatigue.  I have been seeing her for 4 years - why didn't she test me?  Crazy!   I am now happy to take the massive amounts of vitamins - because I know it is short term.  I give myself my B-12 shots monthly, and will continue to do those forever due to pernicious anemia. skipped it once - not a good thing to do with me - started losing function on my right side again.  I went from being extremey fatigued, stiff, in pain to being alive again when my vitamins kicked in!  I am now training for a triathalon- something I would have never thought I could do a year ago.  I am also a teacher and mom and I do not catch teh bugs.  I share my story because it is  adifferent perspective.  I am thinking your daughter is discouraged and looking at this as a tough sentence to handle. This forum is great -but can get very depressing bacause people who are hurting are seeking advice - people who are doing well - and there are a lot of us who have gotten to the well point even with out the powerful meds (they side effects can be nasty - I tried them and quit too) are too busy climbing mountains!!!!!   These meds are great lifesavers for some - I am just going to do everything in my power to stay off of them! That incuded getting my bodies chemistry in balance nutritionally.  My sjogrens is no longer a sentence - in fact, it is not even an issue anymore besides a lilttle dryness.  It is too easy to blame everything on sjogrens - I found out about the pernicious anemia (caused neurological issues)  and food allergies after years of being told my symptoms were related to my sjogrens.  Glad I was persistent...  Your 18 y.o.  probably needs some positive reassurance that her life could be still as she dreamed it.....  that is probably what she is afaid of most.  I would be.

I wish you well... 

Living life 100% even with sjogrens!!
Tami K

 

[aussie mum]

Thank you all for taking the time to respond. There is a lot of great advice in your posts.

Pud - I have found Lupus NSW a great help, I've read quite a few of their books but my daughter is not keen to go to any counselling yet or go onto the young people's forums - I'm sure she is expecting to wake up one day to find out this was all just a bad dream.
Tamik - I found your comments very interesting. I am so glad you are feeling good. I hope your triathlon training goes well. My husband has competed in many triathlons so I know what training you must be doing. One of my daughter's aims was to compete in the Australian Ironman triathlon with her dad, so maybe that dream is not gone after all.

I will be glad once the HSC is all over, but for now I'll continue with the hugs...(in between the coughs).

Aussie Mum