Sick and tired of being sick and tired

[Fairy]

Hi all,
It has been a long time since I have posted, but I feel like coming back and having a good cry with my old friends. I am just at the point where I can't take this SJS anymore. My lungs are still so bad and now with the dry heat (i'm in Texas) I feel even worse. I keep taking all of the meds, but I'm tired of being sick. I can't even stay up for very long at a time now, I just look forward to my nap everyday. Sorry to whine, but I just needed to vent. Thanks for listening.

[Linda196]

Vent away, Fairy, sometimes it actually makes us feel better to get things out in the open, and here, in this safe place, you know people are going to understand and support you.

{{{{{{{{HUGZ}}}}}}}}...and passing the tissues!

[JJ]

Hiya Fairy,

  Know how it is...sorry for the frustration...just keep talking to us.

Had my cry yesterday so missed getting to do it together...where in Texas

are you...My daughter, the one that has SJS,Thyroid (actually no thyroid), and

a brain tumor lives in Bryan, TX. Maybe next time I get to visit her we can all get

together and do a little bit SJS stress relief and I could dazzle you with my

unsavory voice ( I use to be GOOD) at a Karaoke place. Yep another one

of those SJS got my voice stories but will save that for when you have to listen to

me...lol...Hang in there!!

Hugs

JJ

[Fairy]

I am outside of Denton. That would be great if we got together. Don't worry about your voice, I have the vocal nodules from the SJS, so mine is all scratchy. I had the nodules removed, but they came back of course.
I am going in to the Dr. in the morning. My kidneys are hurting so bad. It scares me because I have already been in kidney failure once. My liver also has inflamation, so this SJS is really hitting me in every way. This all started in November, and it hasn't let up yet. I wish I would feel better. Thanks to all for letting me vent and thank for the tissues!

[JJ]

A question about the kidneys...I have had really bad lower back pain lately, urine

is darker than normal with not so nice smell, and its like when i do urinate it goes

in spurts...almost like a little plops out..a sec then another plop..or it sounds like

air...would that be more something from the bladder or could it be kidneys?? I

know its gross and all and your not a doctor but maybe it sounds familiar or you

could discount it as something you didn't go through. I hope that it is just something

that they can treat fairly easy for you tomorrow. I'm sorry your going through so much

and my thoughts are with you. Let us know what happens.

JJ

[Fairy]

Hi JJ,
I sounds like you could possibly have a kidney stone. I have had 2 and that sounds familiar. If there is one thing I know about, it is the kidneys. I have to be very careful with mine. Drink some cranberry juice. That cleans out the kidneys. Lower back pain is a sign on the kidneys. I have it all the way through this time and I didn't go to sleep until after 3am because it was so bad. Thanks for your good thoughts. I would put a call into your Dr. just to be safe.

[Dolly Dimples]

  Hi Fairy, go right ahead and bawl if you want, we are all used to it.

     We woulden't  be human if we diden't crack at times, it's our safety valve..

          Sounds to me that you have every reason to have a good cry,

  One thing I have to ask is.. do you use a humidifier at all times?
    Take all the rest you need right now, and I pray that soon you will find some relief from your  ails !
                                                          Hugs Dolly
 

[Fairy]

Hi Dolly,
Yes I do use the humidifier at all times. Thank you for your kind words!

[kimbo]

Hi fairy,

Sorry you are having a hard time of it.

It really does become weary when this desease takes us down into a long involved flare.

I hope you have a doc who will benefit you thru this time of flare.

keep sharing and know that you are in our thoughts.

Prayers and hugs, kimbo

[lynnmarie219]

Hi Fairy!

As the others have already said...vent away..this is the place to do just that and it is good for the soul!

How did your appt go today?

[DanzGrl]

Fairy - I live just outside of denton also...where abouts?

[mustangsally]

Hi. I joined the forum today. I know what you mean. I have SjS too and I can no longer work. This condition is a daily, never ending thing that we have to manage. My heart goes out to you. I'm glad you came here to cry and vent. We need this! Do what you need to do to take care of yourself. We are here for you and people care. There is strength in numbers. It's good to talk to others who understand what you're going through, who are there with you and have been there many times. I hope and pray that better days are ahead for you. I just wanted you to know that you are not alone and that someones cares. Keep fighting. Things will get better. Never give up! Don't let SjS rob you of making the most out of your life.

[Fairy]

Fairy - I live just outside of denton also...where abouts?

I live just West of Denton.

Thank you everyone for your kind words. I found that I have inflammation in my Liver, pancreas, and Kidneys. No infection, but my white count is a little high. I had to double the steroids again, and start on an antibotic. My right lung is hurting again today. I hope this goes away because I can't take another lung flare. I have had 4 since November.
I appreciate all of the support on this website! Thank you all so much!