BIG OLD FLARE...AND I'M SO OVERWHELMED

[dkpowell]

I'm sitting at my desk, which is inundated with work...because I got pnuemonia and was off work for a week, came back too soon and couldn't keep up...Sjs went into a terrible flare, and now on prednisone to see if it will com eunder control. I take plaquinil, but rheum isn't too happy with results and wants to go to something 'stronger'.
God help me, I am so depressed and tired. this year has been nothing but one flare after another and I feel as if I am about to go under. I was diagnosed last November after a monumental flare that lasted months. I went on plaquinil, felt somewhat better, then started having trouble with my teeth, - lost 2 and had 2 root canals in a months time. then, Like an idiot, i mixed up my meds and was taking tramadol when I thought I was taking plaquinil. I went into another flare - got that back under control more or less...then got viral pnuemonia. I am exhausted, depressed, overwhelmed - I sit here at my desk knowing I need to work and all I can do is peruse the Sjs sites. I guess I think something is going to jump out at me and make me feel better.
I work full time. Rheum has suggested I cut back, but financially, I can't do that. I do medical coding and billing for a surgeon ( a busy surgeon); and am taking a course to complete my certification in opthalmology billing. I have a daughter and two grandchildren closeby and I am often too tired to enjoy them. My husband is great - supportive, but he can only do so much, and we are both tired and the yard work and house work is behind...
There's no answer to this except time - time for the meds to work or to be changed. I really don't want a 'stronger' med - but if that's what it takes to be able to ge through the day - I guess I will.
Guess I just needed to climb on my big old pity pot and whine somewhere that people can relate.
I am tired of being told that I look great. I don't feel great!
Debora

[Bernice]

Don't I know what you mean! After that 12 hrs one way weekend trip Disney which lead to 2 year old grand baby coming back for month long visit, still working. I went into a flare that I still have not recovered from. At one point I thought I might not make it, felt like life was draining from me, hated to even  lift my fingers and toes.

I have been at the bedside of three dying people:  primary caretaker of one (my father), assistant caretaker of two (cousin & friend). I relate my exhaustion to what they appear to be feeling on their death beds, only I am still up, though barely.

I know what it's like sitting at a desk trying to focus on work, (especially something you're not too interested in, in the first place) trying to force you mind and body to do something they can NOT do.

I am so thankful I work part time, in not only a office to myself but the only one in the building most times! This allows me to sit, slump and stretch and look as crazy as I need to, to get through the day! And not have to talk to anybody, that too takes too much strength.

If you can get up and walk outside get fresh air to clear your head and just a few minutes of change of scenery helps me. I can't just sit in one spot for long when I feel this way, if I do I will be knocked out before long! And girl you don't want somebody to look over at ya and there you sit with drool running down your face looking crazy! How will you explain that??   No! It's best to explain to them how you feel and what your needs are. GET UP! WALK! GET SOMETHING TO DRINK!

Peace & Be Blessed!
Bernice

[dkpowell]

Oh Bernice - you made me laugh!! The description of me drooling at the desk is sooo apt!! the thing is - the people i work with are great, and if I told them I didn't feel well, they'd do anything to help. It's just that there isn't anything to help!
Your description of not wanting to move your body - man that is so true. it feels as if my srms and legs weigh a thousand pounds each!
Thanks for your reply - it helps to have someone that can relate!!

[Poochie]

Hi Debora,
It's a been a while, but I still remember feeling like you do.  I thought the day would never end and I just prayed all day "Please God don't let me fall asleep at my desk".

You are luckier than I was.  I spent 30 yrs or more trying to find out what the heck was wrong with me.  It wasn't until I finally retired at 62 that I was dx'd with Sjs, heart problems, neuropathies, balance problems and extremely low white blood platelets. 

I got the same reaction when I mentioned not feeling well.  "But you look so good".  I always replied "Well, looks are deceiving". 

I too had the viral pneumonia and it's something you must be very careful about.  We Sjoggies are quite good at getting it.  I haven't had a problem with it since getting a pneumonia shot in 2004.  I'm due again for one in November.  Please ask your doctor about getting it.

I wish I could tell you what would help, but the only thing I found was rest when you can and keep hydrated, especially in warm weather.  And Bernice has a great idea, about going for a walk, even it's just outside the door and back.  Moving always helped me. 

Hugs, Pooh

[Bernice]

I know about missing teeth too. I have "lost" a few in the back (Thank God!). At first I thought it was my dentist messing my teeth up, he has cracked a few trying to remove others, but now I realize it seems to be due to SJS. Dentist suggests bridge, but I "lose" them too often for that. I miss having a big beautiful smile!  Guess I should just be happy missing teeth are only in the laugh zone and not in the smile zone. Problem with that is, I laugh a lot! Told my husband this morning I need to make appointment. Already close to smile zone, if more teeth have to come out I'm going to have do SOMETHING AND FAST! LORD HELP US!

I don't know what people are thinking when they say I look good and not ill, if they only knew what they were really seeing is due to SJS! SJS does take it toll on us on the outside. Guess they just think it's all just normal wear and tear(dry skin, weak & weary eyes, dry hair, missing teeth etc...).  I thought to myself yesterday "Man if I didn't have SJS I would,  well might be quite the looker).


THE DAY IS ALMOST OVER, YOU CAN DO IT!!!!!!!!!!!!
My grandmother was born in 1905, a time when the work day used to start EARLY (When the rooster crows)! When I was a young girl and wanted to sleep in during summer school break, EVERY morning around 8 a.m she would come for me, always saying "Baby half the day is gone," Well it's way past 8 a.m. no matter where you are in the US of A.

[dkpowell]

Well, I have lost weight due to nausea from my meds - about 20 pounds. Which, frankly, I needed to lose...I have had too many years of meds that cause a weight gain!! But, there are circles under my eyes, my skin is dry and flaky, my hair doesn't shine at all anymore - it looks like straw.Thank goodness the teeth I lost are in the back - so you can't see the gaping holes!
Pooh - I like your reply that looks can be deceiving! So true - only I don't think I look so great! Funny thing, before I lost weight from this, NO ONE ever told me that I looked great!! LOL THe sicker I get, the crazier the comments!!
Bernice - Thanks for the encouragement - You're right - I can make it!!
Pooh - I am soooo sorry that you had to deal with this for 30 years and still ahve to work, no Dx - no help!! Makes me feel like I should not be complaining...I have help, support and meds to help me. If you can hold on all that time - I can do this for a while longer.
Thanks for the support!
Debora

[jaygee]

I really hope you are feeling better soon.  Here's a cyber-hug (((((((you)))))     xx

[dkpowell]

thanks for all the support. I am feeling a bit better today - not so overwhelmed. It helps to know that others have experienced it -- and survived!! I am still not caught up, and my concentration is still not the best , but I will get back on my feet again. It's nice to have a place to go where people don't think you are just crazy!!
thanks again - Debora

[lcm]

I hear you! I work in a hospital doing coding and started out in doctors offices. I am so afraid that my production will be low and I'll lose my job. I have good times, but lots of fogs and not feeling well mixed in. ugh! It is so hard to struggle just to make your obligations. Sometimes I just want to disappear.  Good luck on your continued education and hanging in there. YOu are not alone!

[hoping]

Deborah and others,
I am so overwhelmed, it's all I can do to hold on.  I want to end it all.  I am despondant.  I am taking steps, a course/group couseling on pain management.  Pursuing Birnbaum at John Hopkins and trying to find a psychiatrist to get appropriate meds.  I'm just so sick of being my own advocate in years of putting all the pieces together for every tom, dick and harry doe doe brain doc. out there.  My son is gone this week and I miss him so much.  I need a reminder of what to live for.  I am in sso much pain that has lasted and ramped up since Jan.  Had several hospitalizations, and no one can seem to communicate to my darn doctor and help me out.  I likely have small fiber neuropathy, and possibly autonomic neuropathy but need to have skin biopsy for diagnosis- hence Hopkins.  My insurance refused to pay for IVIG which had helped some.  I hate life, and I too hate people saying you look so good.  Before the fifty pound wt. loss I never heard that either.  I often say looks can be deceiving, because I feel like crap.
Glad you all relate,
Karin

[jaygee]

Karin, you sound so overwhelmed, too.    I hope someone comes along on here soon, who has more knowledge that may help you.  ((((((hoping)))))   xx

[AlienDog]

Hi Hoping!

I am so sorry you are going through so much pain.  I can relate.  It is very frustrating and overwhelming dealing with doctors while being in that kind of pain.  It appears that you are taking the right steps to help yourself ... the group/class and also approaching the psychiatric community for proper meds to help you handle the enormity of it all. 

We are lucky to have this community of people who can understand what life is like for all of us.  We do not have to pretend to be well, we do not have to explainthat looks can be deceiving.  Everyone here understands what we go through.  I wish I could take some of the pain away, or bite your doctor's butt.... but since I cannot, I have to just let you know that your voice is heard .... I know your pain is real, and I know how hard you work to self advocate.  I hope you get some relief soon...

Woofs

[Bernice]

Hoping,

"I am so overwhelmed, it's all I can do to hold on.  I want to end it all.  I am despondant."


Your response upsets me! I know that it is so very trying to go through all that we go through,BUT we go through. Soon someone will help you, just don lose HOPE!

When my doctor first told me I have SJS he wanted to prescribe med. for depression. Well I really didn't understand and was somewhat offended. I always thought of myself as a strong individual. Well I came home and researched SJS and wished I had those pills.    I have hurt most of my life and yes I have had times when I just get tired of hurting.

Your response reminds me of a time. As a child I spent a great deal of my youth YEARS sick and in pain that would drive you out of your mind. Going from one doctor to another with ALL of them saying there was NOTHING wrong, One even suggesting to my momma to give me fake med which as only sugar water. I needed med. for cycle to start and end, could hardly stand on my feet from weakness and PAIN, it hurt to breath, I lost so much weight, weighing only 70lbs. at age 15, it was not until I started getting boils all over,  that they decided that something WAS wrong and sent me to a kidney specialist who upon seeing me told my momma that I would NOT be going back home today, but straight to the hospital for emergery surgery within hours. I came to his office in my momma's arms (she carried me a lot, too painful to walk) and left in ambulance. Well I was so relieved to know that some help would finally come my way, but afraid that help would be denied me again, the only thought I had was that I was already bleeding so bad he would tell me no, but wait! I had been rejected so much even when help came I still feared. He did the surgery! I was born with a too small opening in bladder! What might not be a big deal today, but years of this put a strain (infections) on my kidney causing damage and poisoned my ENTIRE system. YOU TALKING ABOUT CONSTANTLY BEING IN PAIN WITH NO RELIEF, FOR YEARS! WITH EVERY INCH OF YOUR BODY HURTING! I guess that's why I have such a high pain level now, the exhaustion gets me down more than the pains! I KNOW PAIN! When I get a kidney infection now I KNOW IT! I LIVED IT FOR Y  E  A  R  S!!!!!!

I share my story with you, a part of my life I never share, too emotionally painful and shameful! You see doing these years I wanted to give up I didn't think help or relief would EVER come I tried to commit suicide taking some of the many useless med. they HAD given me over the years, then having stomach pumped! I was only 15, but was tired of living in pain. BUT just think if I had been successful I would not have my beautiful children and all the countless other blessings I have today.

THIS IS TO ALL! DON'T GIVE UP! LIFE IS MORE JOY THAN PAIN!!!!!!!!!!!! I AM SO VERY GRATEFUL TO BE HERE TODAY!!!!!!!!! THAT RIGHT DOCTOR / MED. IS COMING SOON! JUST DON'T GIVE UP!

If I can be a blessing to even one it's all worth reflecting and sharing!

Peace & Be Blessed               PEACE = HOPE and FAITH  &  BE BLESSED = CHOOSE and EXPECT and ACCEPT BLESSINGS!
Bernice

[Chickpea]

Hi Hoping

This is so familiar.  I too know how it feels to be overwhelmed by the pain, the loneliness and the sheer exhaustion of trying to get even a little of the care that's needed.  And it's clear that many, many of us here share it too.  I'm so relieved that you came and told us how you were feeling instead of keeping it all to yourself and struggling alone.  All of us know that these times come and go, and then return, and then disappear again.  It sounds as though you're doing lots of the things that should help - finding a course on pain management, pursuing doctors and treatment - but it's still a struggle. 

Missing your son must make it all unbearably harder.  We hold our children in our hearts, we want them to be strong and independent, but we also cherish their presence.  I've been having some really good cries recently about exactly this issue.  I didn't know I could make that many tears (apparently I have low quantity but high quality tears!) until I watched the scene in 'Mama Mia' where she helps her daughter prepare for her wedding.  I know it sounds odd to recommend a good weepie to someone who's feeling low but it worked for me.  After a good cry I felt as though my heart had lightened.

Dearest Karin - keep telling us how you are feeling, share the burden and we'll carry you with us for as long as you need it.  I know from your posts that you're always there for other people when they are in need.  Now is your time to receive.

Thinking of you - Chickpea

[dkpowell]

I did feel better yesterday morning, but feeling worse again today. it is sooo hard not to be depressed. I was trying to define this morning just why I am so depressed...and it does come from so many years of hopelessness - the feeling that there is nothing that can be done about my health, etc. I know that the Drs are trying to help - I 've seen the same rheum for 4 or 5 years now. the initial diagnosis was fibromyalgia, it's only in the last year they diagnosed the Sjs. Until they decided it was Sjs, all they ever did was say - well, sorry you don't feel well, see you in 6 months. He was willing to giv eme meds - but no real hope pf ever feeling better. Now, they get all wound up if I don't fel well, and tell me I need to call them if I don't feel well--big change! But, my mind set is still that they won't help and I will have to feel this way forever.
I am afraid that I won't be able to keep up with my job - I can barely keep up now. I  can't keep up with my life. i am missing so much every day - just sitting here not feeling well, AGAIN! I don't mean to be negative all the time ,but I look at my friends my age - I am not like them anymore. People don't call anymore, because they are tired of me saying I don't feel well enough to go do this or go do that...I worry that my boss will get tired of my health problems - I fret every time he seems to favor the younger, healthier, employees ( my fears - he's been supportive), I am afraid my husband will tire of a sick wife and having to carry so many burdens (my fears- he's great), I worry that the few friends that still call will giv eup on me. This isn't the person I had planned to be. I used to be active, healthy, energetic, --FUN!! I look in the mirror and see a shriveled old lady before my time!! I get to start tapering down the prednisone today - not a moment too soon. I wouldn't even go to church last night because I was so hot, tired, and bummed that I didn't want to see the young, healthy, happy people and feel like I wasn't one of them...THAT'S a BAD attitude, for sure.
I know a lot of it is the prednisone - I don't do very well on it. But, I am sure tired of handling this well - I am tired of handling it at all. I would actually like to go back home and go back to bed for a while. Or maybe just cry for a while - no particular reason - just feel like crying.
it will come around again - I know that. its just been soooo long since I felt well. The entire past year has just been one long flare -- I am so tired.
Debora