Going To Work Tomorrow...

[deucykub]

Hi, everyone. I'm not sure why I'm posting this, but I guess I just need to get it on "paper."

I've been asked to come into the office tomorrow for a meeting with some contentious folks outside of our agency that I've been working with and who like to play manipulative games to get their way in our discussions. I had to give a pretty serious ultimatum, and my lead decided that now we can have a "talk about our feelings" meeting with these people even though the ultimatum was specifically designed (and agreed on) to stop precisely these kinds of tactics.

Before that, I meet with my lead to catch him up on this history of the situation.

Add to this, I have been in a struggle with my supervisor for reasonable accommodations that is about two weeks away from being a lawsuit (10 months, 12 doctors notes, 2 equal employment notes, 2 independent evaluations and recommondations supporting, and still no accommodation).

I'm working from home because I don't have the energy to get to work. I haven't walked into the office since mid-November. Bathing alone drops my pressure to the 80s/50s (from 110s/70s due to the miracle of Florinef) and knocks my heart rate to around 160. Then, I have to get dressed, which does the same thing, put on makeup - same thing, style hair - same thing... which would normally leave me napping for the rest of the day. But then I have to DRIVE to the office, which is terrifying as I get horribly disoriented even when I "ponytail" and "no shower" it to get an errand done. Then I get to walk into this adversarial situation and hold my own for several hours.

I can triple read every word I write from home to correct all my cognition difficulties that show up in an email, but I can't "fake" it in person. My brain gets confused so easily.... I start to talk and everything comes out backwards and upside down. I make no sense. It's going to be humiliating.

Work has already threatened to fire me... the last thing I need to do is give them more reasons why this would be a good idea. The people we're meeting with will be trying to convince my lead that I am biased against them (when I've actually bent over backwards to help them myself and to get other people to approve help for them), and my supervisor will probably want to meet with me to discuss my future. I'll be on the defensive the whole time I'm there, and those emotions are, of course, really great for POTS. Not to mention, it will also LOOK like I'm on the defensive, which is not a position of strength. I can barely work 5-6 hours from home, and that is keeping every part of my life under perfect "POTS" control to maximize my ability to work, so strength is something I have in short supply anyway.

I know it will go better than I think, but right now I'm really scared.

[Angelika_23]

Hello,

I'm sorry you are feeling so scared. From what I have read, that emotion will set off your POTS so be careful.

I understand about the work thing. I am sorry they are making it hard for you. Do you have anyone at all there that will be there for you? You might feel better having an ally.

Try to rehearse what you need to say, write stuff on note cards if you have to, or in a planner (then you'll look all slick and professional). Do you have anxiety meds? If so, maybe you should contact your doc and explain the possibly "hostile" situation and see if you can "bump up" your dosage for the day or something like that.

Sending good vibes your way. Keep us posted!

Angela

[JenniferInOhio]

Good luck!! I hope it is better than you think it is going to be!

[april abbott]

I know how scared you are. Right now I am in college, and fighting just to attend classes full time, and there are days I ask myself, "why am I doing this?" I wonder if a degree is even worth it when I may not even be able to work. I wonder why I work so hard on making almost perfect grades, and I wonder why my family and I are all making the sacrifices for my education when none of this may pan out. Plus, we are going thousands of dollars into debt for tuition. Great. So when I graduate, not only do I have the pressure to go to work because I have wasted 2 more years of time on education, but I will HAVE to work just to pay my student loans back. Honestly, going to work terrifies me. I haven't worked in over 8 years, and I haven't got a clue as to how I should handle telling or not telling my employer. The career I am going into is in the medical field, and will require I deal directly with patients. I can't wait until my first "episode" in front of a patient. "Excuse me miss, I have to lie down in the floor now, and I think I'm going to take this oxygen mask with me." I have days where I feel very positive and days where I feel very negative; it really goes back and forth with me.

My advice is only this: just do the best you can. That's all anyone can do. Tell yourself it is okay to be sick, and give yourself permission to mess up. I don't know about your financial situation, but I know that if you really need the money than it certainly will put more strain on you to be on the brink of losing your job. I personally really need to work to help my husband out. We get by, but that is about it.

Dysautonomia is frustrating, not only because we are very sick even though we look well to others, but also because no one has heard of it, and no one cares. I'm not trying to be insensitive to people with other illnesses or disabilities, (believe me, I truly sympathize and realize other people are worse than I) but if it were cancer or diabetes, or some other well known health problem, you might not be having such a struggle at work. People respond differently to illnesses they understand, or at least have heard of.

Get up that morning, and take it one step at a time; one minute at a time. Stay positive. You are sick, and you deal with it the best you can. You are not alone; you just have insensitive axxholes for superiors. Remember, there are people out there that understand fully what you are going through. Best of luck. Be good to yourself.

[MomtoGiuliana]

I hope it goes ok. Even slight emotional disturbance at work can drain me/cause my POTS symptoms to flare. I hope these people are human enough to have compassion for you right now. I know how hard it is to go to work and try to appear normal and function normally when behind the facade you feel horrible.

As April said, we can only do the best that we can.

Let us know how it went.

Katherine

[Rachel]

Hi Deucykub,

I hope that all goes well at the office today. I'll be thinking of you. Please let us know how things turn out.

Best of luck,

Rachel

[Tessa]

I really hope it all turns out well, Deucykub... Remember that you have friends thinking on you, sending you good vibs and hugs. Try to imagine us at your side when you have to face the problem... we will be right there with you... Smile when you remember these words and imagine us being at your side, you will feel much better

Assume your illness. Accept it and act only the way you can and are.

It is your health, your heart, your blood pressure. They really do not care if you start feeling worse or if you have pain. So do not give up and try to avoid what triggers the symptoms.

Take care,

Love,

Tessa

Keep us updated, please.

[Jersey Girl]

I hope it goes better than you expect, because then you will get a moral boost! You deserve to be treated with respect. Martha

[deucykub]

Hi, Angela, Jennifer, April, Katherine, Rachel, Tessa, and Martha:

Well, unfortunately it went about as I expected it, which means a 3 1/2 hour bashing fest with me as the target. What got me through, though, was knowing you all were here, supporting me through this. I had a lot more strength than I expected, and presented my defense fairly well. Words failed me several times, but not nearly as bad as it could have been! My supervisor took the side of the other party even after they had left, shooting questions at me right and left. That consisted of, well why didn't you do this? I did. and this? I did. and this? I did... ad nauseum. She was digging to find anything she could pin on me as a failure. The good news is she didn't find it and was forced to question petty, non-priority stuff to try and make me look like I was not doing my job. At least, I know I'm still on top of my game in that respect! But hey, she uses her imagination when she writes letters to me and makes up performance problems anyway... It makes me wonder why she expends the energy to look for real ones if her ficticiouis reasons work just as well.

I was really sick by the time we were done. My husband drove me there and picked me up... bless him. By the time he got there, I could barely stand up to walk to the car. That front seat was fully reclined before my tush hit the chair I think!

Thank you all for all of your advice. My heart is just racing and pounding, and I am so nauseated, weak, and dizzy. I did call my doctor today and ask for some anti-anxiety meds, and she is calling those in for me to help calm my ANS which is spinning out of control right now. Thank you for suggesting that - I never would have thought to ask!

The most frustrating thing about today is it reminded me just how disabled I am. I keep thinking I'll get back and that I am sooo close to being back. But today was a harsh reality check about how controlled I'm keeping my environment just to function and what happens when I'm outside of that environment.

It felt good to know my POTS sisters were linked arm-in-arm with me today. It helped so much to know I was not alone. Thank you so much for your words of wisdom and support.

[Rachel]

Dear Deucykub,

I'm so sorry to hear that you were treated terribly. That is so wrong.

I wish there was more we could do to help you.

I hope you can rest and recuperate well.

Feel better,

Rachel

[Jacquie802]

Deucykub,

Just wanted to say hi and that I'm sorry how today went. I ended up leaving my job @ the bank where I used to work. I had doctors notes stating that I needed to have a chair at all times, but my manager didn't care. I would then get written up for stuff I never did. Example: One girl I worked with used to say I did all these things I never did, I even asked management to review security cameras, which they wouldn't but once this girl walked out one day my manager came up to me and said, " Oh I heard so and so was not very nice to you..." Um yea no kidding was what I felt like saying!!! I used up alot of my sick time b ut had a week left and was told I couldn't miss anymore days for doctors apptmts. There were more issues than this, but I just wanted to let you know I can relate...I'm sorry for anyone who has to go through this.

Jacquie

[yogini]

Hi there,

I'm sorry you've had to deal with this ordeal at work. I have a friend who complained about a sexual harassment situation at her work and after that, she felt like people kept trying to find fault with her performance at work in order to build a "case" against her to justify her termination. It sounds like this may be happening to you? It is generally OK to terminate someone for any reason, except discriminatory reasons. The problem is that the discrimination is hard to prove and so employers try to point to "problems" with performance. It makes me so sad that this still goes on.

I am impressed that you were able to make it into work with such high heart rates. I'm a wimp - I can't walk for more than a few minutes once my HR reaches 115. As for anxiety, I think it's perfectly reasonable for you to feel anxious given everything you're dealing with.

Even though my POTS is mild compared to most and my co-workers are very cooperative and appreciative for the most part, working has been a big struggle for me. Our doctors tell us to be "active", but it is so difficult. I wonder if the thinking on this will change as more is learned about our condition.

[april abbott]

Well, I'm glad you got there and back in one piece, even if it made you feel like crap, and you got treated like dirt. You stuck up for yourself, and you seemed to do it with pride and confidence, despite your physical weakness. There are a lot of healthy people that couldn't do that, even in the best of circumstances. I'm glad to hear that you know how much we all support you.

We all know how it is to feel completely alone in the universe; that is, until we come here and chat. I don't come here as much as I should, but this place is a refuge. Even the people in my life that really do try and understand my situation simply can not begin to comprehend what it is like for us.

I wish I could give some wonderful legal advice; something that would help put this whole situation in perspective and give you peace of mind. Whatever you decide to do about your current situation, good luck, and please keep us updated.

Ya never know. Sometimes what seems like a curse actually ends up being a blessing. You may end up in a position at another job that fully supports you. You may just end up not working, but may find that easier; therefore less stress and worry. You may take these morons to court and actually win some type of settlement. Who knows. Just take care of yourself and know that this is not your fault. You certainly didn't choose to get sick, and you didn't choose for your life to be turned upside down. You didn't choose to be discriminated against.

The sad thing is that if your supervisors would just stop and think about how fragile and uncertain life is for all of us, they might have a small amount of compassion. Just think-- at any time, one of these people could be stricken with a sudden illness; be injured in an auto accident and require the lifetime aid of a wheelchair; or could have a stroke or heart attack that could leave them incapable of functioning. Yet, they don't stop and think of that. They don't want to think of the possibility of being in your shoes, but it could happen. Would they want their supervisiors herassing them, and threatening them with unemployment? Do they realize that they are just as replaceable as you? Apparently not. I'm certainly not saying I wish any of these horrible things on these people, but they need to stop and consider how susceptible ALL of us are when it comes to tragedy and loss.

Anyway, keep a positive attitude and be easy on yourself.

[Tessa]

I know you are feeling miserable now and I am really sorry that you had to go through such a bad experience, but I would say that you achieved your own expectatives.

Thank you for keeping us in mind. You were strong - not only because you had our support - but because you have the power to win.

You felt strong, answered most questions the way you really wanted and even though you are feeling sick, you did it right.

Good for you!

I am glad that your husband was able to help driving you to and from work. That was of great help too.

Besides all this fight, never forget that your health is above all. We are "handicapped" and have to go through many health problems, but I can assure you that we can feel better with ourselves the sooner we accept it. (Not always easy, I admit, but positive when we can).

Get a worthy rest and calm down.

Take care,

Love,

Tessa