staring in the face of Humera

[Justdave]

What to do...

This disease is getting worse by the minute.  They had to take me off of Cellcept
because it was causing some seriuos back pain. So I had to stop sudden.

I started back up on mexotrexate.  OF course this doesn't work right away so I have
been in a world of hurt.  The next step is a drug called Humera, my rhuemy specialist,
(great guy by the way) thinks it can help.  He has had some luck with it with my
odd symptoms with other patients.

The drug scares the snot out of me.

But I am in so much joint pain.  But most of all the disease has been busy on my cns
that talking and movement has become difficult.  I tremor all the time now instead of sometimes,
and sometimes I try to talk to people and it gets all jumbled.  I am losing my eyesight
and my hearing.

When you read the cautions there is a huge point about not givng it to people who have cns issues. I mentioned this to my Doc, he said it pertains to MS, which I don't have and not to worrry about it.  Since he has the experience I am trusting  him over web sites

Right now I am in a world of  hurt, if this gets any worse I'm not going to make it.  I try to keep it from my family but I am scared, I have a nuero appoitment on Monday morning, rhuemy in the afternoon, I start the drug on Tuesday.

Sometimes it is so painful I can only do a little at a time,
I am trying to hold down a full time job as well. My boss pulled me in the office the other day to talk about my performance. I am forgetting things, I am dipping behind my peers in productivity.  He knows of the disease, I have an FMLA to take time as needed.  I can see he is trying to get around it,  now I have to meet with him once a week to show on ways I am going to improve.  I work so hard, but my brain isn't keeping up.   He gave me a form to give to my doc, for some special help,  mostly a change from a laptop to a tablet computer, this can be carried and help me take notes when I can't  remember.  I fear this form as well, when my doc fills it out and I hand it in, can they now say they have evidence I can?t do the job, will it be used as a weapon?

The worst of all is I am bipolar. Have been for most of my life. , You want to cause fireworks, give a person who has a hard time finding hope under normal circumstances a crippling disease, and then get his boss to ask him to fix it and let him know how much it makes him look incompetent and  unintellegent.  

I feel like I am on a cliffs edge? down below is humera,  will I drown or will it save me?

Sometimes I just want to curl into a ball and let the world go by.  But I have a son and wife, they look for me for hope.  I put my big pants on and smile back and tell them it will be okay. But I fear soon, I will lose that, and be unable to speak.

God help me..

[lynnmarie219]

Justdave,

I am so sorry you are feeling so badly and in so much pain. I know things may be sounding pretty hopeless to you when you hurt so bad, but please remember that there is a light at the end of every tunnel...it may not seem like it today...but things will get better for you. Have you talked to your doctor about your fears? Is he/she able to alleviate some of your concerns before you start the medicine? Its good to know that you trust your doc and value his opinion...that's a big plus for you!

Another option is to call and ask for a referral to social worker/counselor that deals with chronic illness. I did this a while back and it was helpful to me to talk to someone who was not involved in a personal way. If you feel you need to immediately talk to someone there are phone helplines available to speak to someone on the spot. If you need to talk...this is the way to go. Phone numbers should be available for both in your local yellow pages.

Hang in there.....and come back here if you nee to vent/talk. Please let us know how you are doing...you have a lot of people here who care whats going on with you. We are here for you! Sending lots of hugs to you..... 

[Jules48cats]

Hi JustDave,
I feel for you and I know where you are coming from.  In 2002 I was on the mexotrexate.  I was having a lot of problems at work.  Kept forgetting things.  After every shot I would notice that I was in a fog, and it just kept getting worse.  I had a friend who went with me to my Rheumy and told him I what was going on.  He told us it could not be the mexotreate.  But I decided to stop anyway.  It did not seem to be helping me.  At the same time he suggested the humera.  I could not believe how much better I got.  Within  a month I was at a manageable pain level.  Funny thing when I saw Dr T the next time, He told me he checked with some of his colleagues and that the mexotrexate could cause the symptoms that I was having, but it is very rare.  
I hope the humeria works for you.  You do have to stop when you have an infection or a cold.  With me it caused some sinus infections which can be normal.  I was on it every 14 days at first and then every 10 days.  I was on it for 5 years before it stopped working for me. I have been on Orencia now for over a year, with good results, and have just signed up for a drug study on interluken.  I think once your body is screwed up enough it is easier to take things that are a little scary.  
You might want to apply for social security disability benefits awhile.  Also I am pretty sure there are government agencies that can help you know what rights you have at work.   You are having enough stress dealing with your condition.   It is a vicious cycle, because stress can make it worsen your health and then you are more stressed out because of your health.
Good luck and hang in there.
Jules

[Epson]

Just Dave,

I have been through what your experiencing at work, when it happened to me I realize why some people go to work with an AK47, your sick and the employer turns up the pressure to get you to resign or find a reason to let you go.

My advice would be to talk to an attorney and keep detailed notes on your meeting with your boss and others, this might be useful in the future.  I went through heck, just as you are, but some how I survived it and I'm sure you will to.

I didn't get mad, I got even.

[kindandcaring]

Just Dave,

I have been through what your experiencing at work, when it happened to me I realize why some people go to work with an AK47, your sick and the employer turns up the pressure to get you to resign or find a reason to let you go.

My advice would be to talk to an attorney and keep detailed notes on your meeting with your boss and others, this might be useful in the future.  I went through heck, just as you are, but some how I survived it and I'm sure you will to.

I didn't get mad, I got even.

Right On! Epson

Im in a similar boat JustDave (Im another dude btw)
Ive got so many symptoms I dont know if Im Arthur or Martha anymore 

I have problems at work, I find the pressure and worry enormous, and negative to my health.
Get help and support from anywhere possible...seek it out from anyone.

I got my GP to write a letter, stipulating what I could and couldnt do...and telling them how BAD it is for me.(basically to lay off me)
Seemed to calm the boss down a bit.

However of course its an ongoing fight.

My Best

[Pisces24]

Oh Gosh - Epson and KindandCarng - you two just hit the nail right on the head.  The employers wonder now-a-days why the employee's attitudes, work ethic, etc are different - especially on the younger empoyees - Well Duuuhhhh!  I am sure all you who have been in the working world for some time have  or  stories.

I was diagnosed with the flu and was running 102 temp. Called in that Monday and was told I had to come into work or get a reprimand letter in my file. Well, I tried to clean up and came into work miserable - coughing - sneezing and with a MASK on. I wasn't there 5 minuties before the boss wants to talk with me. See anyone over 1 hr later from their shift start without prior approval gets an "unscheduled absense" mark. Sooo no sense of me continuing to work cause I got the mark anyway.      I called my doctor's offce who were all just appalled that my work would do that. I asked about FMLA and the nurse said she would call me back. Less than 5 minutes later she calls and says send us the paperwork. Sooo I could use FMLA to get my flu covered due to my bad autoimmune problem. I think my work really really ticked off my doctor.

You don't say if you have the FMLA - if not I would seriously look into it.  I would also recommend talking to a counselor to help your piece of mind and to look into taking an anxiety medicine. You are going through a heck of a lot right now and this would help. Or even an attorney for that matter. You have to look after yourself cause believe me employers are only looking after themselves!

My SJS symptoms are not bad compared to a lot of folks on this site (but I get infections very easily) but employers just don't care why you are out, only that you are out period. I was very suprised that all the info put out by the CDC etc is just BS they have to put out - no teeth to force employers to let their employees who catch infectious diseases to stay home. How the government expects the flu NOT to spread I don't know.

[Justdave]

Thanks for the replies,

    I really don't have many places I can go where people understand. Oh some people feel bad, Some are embarrased for me, and yet others think I am doing it Somehow on Purpose for attention.  But when you share the discomfort, pain, shame and forced humility that you have to realize you have become ill and you no longer do what you used to with ease.  Only then can you say you understand.

   I work for a large Company, it has thousands of employee's and I have worked there 15 years. gave them my best years, and they did well in those years.  when I became ill my Peers became annoyed, See I am a Supervisor with direct reports, 15 actually. and while I was out People had t0 step in with the day to day.  They started to get frustrated, then they started to tease me in public about being Sick.

  Soon the teasing became mean, with outright insults that others chuckled about in my Presence.  The last straw for me was when my old manager decided he would give me 90 days to shapeup or ship out.  I had asked him in the post to lighten the workload, that I of everyone had the most. I had proof, loads of it.

I was so mad I went t0 HR, Filed harassment Complaint that I was being Publicly harrased for my illness and unfairly treated. I told them I was getting a Lawyer. They Started Working with my old boss but I still had to go through the 90 day Process and prove myself.


it got back to my Peers I Complained about the harrasemet. And I was called a traitor and no one would talk with me Other than what they had to.  It was horrible.

now the whole mess is starting all over again. They sent me to a class with 360 feedback. If you don't know what that is, it's when they give a secret Survey to your manager, Peers and direct reports where they give feedback on you, their opinion of you, and how they think you doing.

My Peers had the pleasure of saying what they wanted, knowing I would have to read it and accept it.  my manager was harsh as well.

The only bright side in the Survey is that my direct reports didn't have anything Negative to say. They thought I was fair Kind, and did a good Job.  they liked me as a boss and felt Cared about.

Now I am Just angry I feel. like a Kick toy. The trouble is I am so sick the energy to fight takes a toll on my heath. I fear stepping out of place or forgetting some important date or meeting and losing my Job and health Insurance

I talked to my Bipolar doc, he told me that the only way Stress hurts us is If we let it.  I have made an appoint to See my old Coucilor, maybe that will help.

it's not the pain I can't deal with. It's the shame.    Dave..

[lori]

Justdave,

I dont know what to say except i will be in prayer for you. my heart breaks for you - I have a 11 yr old son who is adhd/bipolar- he has a rough time. Please hang in there- there is a plan for all of us.

lori

[RobinBat]

I don't really have anything to add, just wanted to send a cyper hug to both of you and tell you we online are here for you. Hope you can get some support there too.
Are you eligible for any type of disability?
Good luck.....
Hugs,
RobinBat

[Pisces24]

you are in my prayers too.  I know stress can do real number on your body as well as you psyche.

Sounds like you were "good ole Dave" at work.  Someone else can't handle all their work, doesn't want to stay late, etc etc - we know we can count on good ole Dave to take up the slack. I learned if you are a "good ole who-ever" type you have to toot your own horn. My company mandates meetings monthly with our direct supervisors and I always have a slew if stuff I did.

Sounds like they are upset because you can't be "good ole Dave" anymore. My company has a 360 secret feedback survey for the supervisors - but it doesn't do any good as far as I've seen. Also a very big company.

I hope you checked into FMLA and have talked to an attorney. Also most insurance plans do pay for some type of counseling though maybe only 4-5 sessions. I would look into that too - if anything to help deal with all the durn stress.

Cyber hug and good Luck!

[kimbo]

Hi Dave,

You have received here lots of great advise.  I am so glad that you have a Dr. you can count on. That is a great base for your health issues.

So sorry your work place has ran out of understanding.

I am glad you have a resource for counseling. And I am very very proud you have great logic to know that is a good direction.
Even though I hear a lot of problems in your postings, I can certainly see you are a very special man to many in your surrounding world.

It is so hard to keep our eyes open to the positive when the negatives trip us up.
But Dave, it is essential that you focus on the positive, your Dr, your family, your counselors.
I am thinking like some who have advised, that it may be time to look into disability do to your health issues.

You are a part of a great compassionate, understanding family here. You may always come here and pour out your trials and health issues, we have many cyber arms reaching out to you, who share this sjoggy journey, that is what we are here for. 


I pray blessing with a great big hug, kimbo

[JannaLee]

Dave,

I know what you mean about the cognitive stuff.  I'm very afraid of losing my mind all together...which irritates my already SKY HIGH ANXIETY...which, in turn worsens my cognitive issues...and so on.

Plus the pain!

Apparently, Sjs can do all this.  Try the medicine, you've got to do something because you cannot sustain the way things are now. 

Sending you my support,
Janna