Is anyone sick of being sick? Pump me up guys!

[Jll]

I have had Sjogren's for 3 years now.  I have/had every possible problem with this disease.  Even, my speech, brain, kidneys, lungs, lymphadenopathy etc....   Someone, please tell me I can make it.  My children are 20 and 12 .....and I need to be here for them!   I feel so alone...but I know I am not.   I can not do immuno drugs anymore since I caught a rare fungus that almost killed me.   Biting the bullet, but I am so fatigued ....I should call it gumming the bullet.  Also, most of my taste is gone now.  I use to love food.....bummer.

[Joe S.]

You can make it.

[warmwaters]

Hang in there, because you can make it.  Your older is almost an adult, and your younger is growing up too.  Love them to pieces, and don't be shy about asking for help. I'm sure they care about you, too.

Hoping all will be well =

[valene2009]

i still love food-but its why i was soo addicted to sugar and am still addicted to salt cause your taste buds change..
hang in there.. this does sux. my eyes are awful. im 37..been sick for 5 years now.. ughh. but i want to get on w/ my life. im single. and need to mingle.. when i can.
this past week my fatigue has been out of control too..hang in

[Jll]

Thank-you guys...no one understands but us! 

[eyeamdry]

You can makt it.  Yes, your children do need you.  Actually, they are of the age where you all need each other, can help each other and be a tight little family.  I know a 12 year old can't earn wages (lol) but still needs mothering, but can also help mother when mom needs it. 

Be honest with your kids about your illness, without overdoing it.  You might have a family meeting every so often (month or every other month) on how you all are, anything that needs changing etc. 

And Valene, you need to get out and mingle.  I just gave my daughter that pitch over the phone.

Lucy

[valene2009]

thanks Lucy. I know i KNow.. )

[reallyneedsanap]

Jll,
I am sorry to hear that you are having a hard day.  I, like so many on this site, have some days when I just want to stay in bed and cry. 
Your kids are young, but they are also old enough for a few things.  One, you can, and should, take naps if you aren't working.  If you are working, see if you qualify for FMLA, and then use it for days like today and rest. 
Two, sometimes the people who love us need to know what to do to help us.  Sandwich night, or joint efforts for making dinner is just one example.  It is hard for kids to understand how bad you feel, because it scares them to think that you are sick.  So just tell them that you have a condition that makes you really tired, and that because you feel so tired, you sometimes feel sick.  And that when you are feeling sick, it would help you feel better faster if they helped take care of you for a day the same way you do for them when they are sick. 
I sometimes think that I got this sick because I pushed myself so very hard for so very many years.  It is hard for those of us who are high acheivers to come to grips with the realization that we have to let go of some things.  If you don't, this will rise up and smack you.  So make priorities, and when you do feel well, don't overdo it or you will create a flare.  I am sad many days because I simply can't do all that I want with my youngest daughter, but then I remember that I am still here, and I want to hang in here to see grandchildren.  And if I am going to do that, I have to be kind to myself.
I hope you feel better soon!

[bob212]

Hi,

The good days will come.  As Joe S says in his profile, remember to breathe!
I've changed my diet and I think it's helped.  But occasionally I do indulge
in some of the stuff I shouldn't (my vice: desserts).  You have to live!

Stay strong.

Bob