good things in life after sjs?

[jas1223]

i was wondering if anyone has had been able to be succesful in their careers or get married or have other good things happen after they had sjs.

I am still kinda of down and every day is a struggle to do this by myself i think the only thing that gets me out of bed is
when  i get to see my daughter as she lives close by and me and my ex wife are on good terms so i get to see her when i want. i find it hard to see a future right now with good things in it.

just having a down day i guess hoping i can get some strength from others who have lived a good life with this

[Billydude]

I'm so sorry you are down.   I remember a point when I was like that.  You just learn to accept any limitations you have and move on.   You'll find that you'll just focus on what you can do and take enjoyment from that.   Everyone has different experiences from Sjs so not every story is the same.    I wish you positive thoughts.
Steve

[lynnmarie219]

Hi Jas,

Yes there is life after sjogrens! I think we all have good days and bad days and when I have good days I try to take full advantage of them...and when I'm not having a good day or days...I try to rest and give myself the attention I need...sometimes that's easier said than done but that's always the final goal!

I still work full time plus hours and I do have have a life outside of work...now I'm not going to lie and say that my life hasn't changed...but I have learned and continue to learn what my limitations are and try to make adjustments as needed. Give yourself time and don't be too hard on yourself...and when you are having a really bad time....come here and there will always be someone around to help you through it!

Sending you lots of positive thoughts....hope you are feeling better soon!  

[jonnell]

Hi Jason,  I wonder the same thing about Jenna, she is only 4 and I wonder what her life will be like,  will she find someone who will understand her disease,  will she be able to have children,  will she be able to work and feel good about herself.   But Ive learned to take one day at a time and try to make things the best I can for her.  My ex and I are also on good terms which helps when it comes to Jenna and her disease.   I think if you can find someone who can love you for you and understand your disease things would be a lot happier for you,  I hope you feel better,  sending hugs your way from Jenna and I.  Cheer up.

[Patze]

Hi Jason,

The others are right, there is life after SJS, and some days it's one step at a time, others, I'm doing lot's of things - I never know which kind of day I'll get and it makes it a challenge to see what I can do without paying a dear price the next few days.

I still work full-time, come here often, and try to be there for my family and friends when I can.  It can be so hard some days, but it's not so bad others, you do what you can when you're able.

Hang in there, okay?  One day at a time, or sometimes one hour at a time is all you can do.

Take care -

Patze

[DragonflyC]

Hi, Jason!

I'm so sorry to hear that you are going through a bad patch right now. 

There is life after SJS, though I agree with everyone else that some days are better than others.  I get tired easily and I get frustrated more quickly than I used to (I get crabby when I don't feel well), but since my diagnosis I have gotten married and taken on a new job.  I've had to cut back on some aspects of my social life and be more deliberate about others (I knew I was going out last night, so I rested most of the day) and I get a little self-conscious about using eye drops in public (I have to use them too often to always duck out to the bathroom), but on the whole, things are OK.  My husband is loving and understanding, and my diseases have only brought us closer together.

I hope that you start finding some more sun in the world soon.  If not, don't hold back from your doctor.  He/she may have additional ways to help you (e.g., predinsone if you are having a flare might make you feel better; a therapist, support group, or meds might help you deal with the emotional part).  Also, try to get lots of rest and to find some things that you love that you can still include in your life (for me, it's a cup of tea and a good book). 

Please keep the forum updated on how you are doing. 

Best wishes,
Dragonfly

[lesmom]

Hi, Jas
I am so sorry to hear that you are having a rough time right now. I completely understand. This "ride" is a roller coaster and I'm learning the ups and downs. It's frustrating and scary and every other emotion that you can think of. Just know that you are not alone and that this too shall pass.

Hang in there and keep your head up.
Leslie

[KJ]

Hugs to you Jason. "Atta boy", for feeling what you feel, and expressing your emotions.  You are doing great, even though you feel awful right now, and I believe that you will find the peace that is missing right now.   Kellie

[wednesday mc haggis]

jas

I can say that the firt leg of the journey with SJS is horrible and goe sinto ad nauseaum.

   I changed my whole diet , went onto canddia diet, and cut out dairy/yeast/sugar/wheat/ and gluten and am feeling much more like my old self.

   Im back at work, got engaged at my worst point, and am battling it all the way, got back to a heavy going job and coping well, and moving home, my im a bit achy at times, and rier than id like to be, but im not overwhelmed, and learning to give stress a heave ho.

   Life goes on, its not all doom and gloom, just at the beginning it is cause its so hard to see how anything can get better, but it can and will

T x

[Sophiamama]

I wonder the same thing all the time.  I was just diagnosed in Nov., am getting divorced, and trying to take care of my 3 year old daughter.   I am definately mourning a lot right now and some days feel like I can accept my new circumstances but not always.  It's definately a process.  I miss my old self. 

[Dolly Dimples]

  Jas I hope your enlightened by the posts you have received..

They  all give good advice, so heed them well my friend , you will live & learn,.. you too Sophiemama!

Come back soon and let us all know how you both are coping.. Dolly.x

[lynnmarie219]

Hi Sophiamama!

Welcome to Sjogrens World!

You are going through a lot of life changes right now...Big ones too! Let yourself take the time you need to mourn and go through the stages...acceptance will come when you are ready! Hang in there!

[Sophiamama]

Thank you Lynn Marie, I know that acceptance takes time.  How long have you been dealing with Sjs?  Sometimes I try to do too much (and live my life as before) but the Sjs gives me a nice swift kick in the @@@ and reminds me that that's not going to continue.  I take Planquenil, and various other OTC and Rx drugs for the eye/mouth symptoms but I am still dealing with a lot of fatigue, muscle weakness, eye/mouth problems, etc.  I try to eat as healthy as I can, take vitamins (fish/flaxseed oil, vitamins), and take organic apple cider vinegar daily (disgusting).  Has anyone out there tried acupuncture, or any other drugs to help with the fatigue?  It's good to be in touch with fellow sufferers!  Thanks.  Ana