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 Just need support..

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medmisfit
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PostSubject: Just need support..   Wed Aug 10, 2011 6:56 pm

:Angry: Ok, breathe..let me start w/ some background..in the states we have something called Family Medical Leave Act. Your doctor completes a form regarding your condition and needs, you submit to employer, and it protects your job for up to so many weeks of missed work (for being ill, appts, etc related to condition). I had this completed in April because I had been missing work w/ headaches, lost vision, complete left side numbness, etc. I have had this crap every day for three freaking years and have come to work. I work for a senior program and we take information and referral calls for the county. Until FMLA completed I was here every day that we were scheduled online.. I made it a point to be here those days no matter how I felt..respect for my teammates and staff that has to cover if we're gone, etc. Well, since April, things have been going downhill. I can't tolerate meds, so driving myself absolutely mad w/ alternative therapies..trying to schedule them around work, making up hours, etc. My neurologist told me to stop pushing myself..once vision starts to act up or the tingling starts I need to stop and lay down til it passes, so that's what I've been doing since FMLA started. I thought I was protected, so stopped worrying about everyone else..apparently that was a BIG MISTAKE!!! Oh, I might also need to mention that storms make my headaches a lot worse and it's been a very stormy year here..I'm missing an average of a day a week. I missed yesterday because of storms and got up late today because it stormed all night. My supervisor has been very supportive, but sent me message that we needed to meet to discuss my time and schedule. I had no idea what to expect and got very Nervous..I lost a job before I got my shunt because FMLA ran out, so I'm very skiddish about missing work. I've been informing sup of appts, making up hours, etc..thought I was doing everything right. Well, apparently not! I was just informed that my FMLA paperwork only authorizes 1-2 episodes a month, so I have to make another appt to get it updated. They want it to stipulate issues w/ storms, mornings, and anything else that may set off a headache..ARE YOU censored KIDDING ME?!!! I may as well attach the IHRF info and all of our guides to this thing. I'm sorry..I have some idea of what makes it worse, but the doctors don't even know what causes CSF to increase. Not only that, but I'm no longer allowed to work late to make up hours or take anything more than 30 min lunch. Now, the lunch thing has just been an hour w/ work buddies every week or two..nothing crazy and not a huge deal, other than it's the only socialization I've been doing AT ALL. Apparently, other staff members have been complaining because they never know when I'm going to be here, don't know what to tell clients when they call for me, etc. Ok, I'm going to stop and take a deep breath here because THAT is completely ridiculous..staff is complaining because they've been having to take the phone lines when I'm out..that's it. People miss ALL THE TIME and we never know what to tell them. I never miss more than a couple of days in a row and all my work is completed on time. Mind you, we're only online two out of six weeks..AHHHHHHHHHHHHHHHHH! I am so angry and disappointed right now I don't even know what to do. I have no idea who to talk to because of course everyone has been supportive to my face..I hate this! I thought I finally found a supportive environment..come to find out they're only supportive as long as it's not affecting them. Like I don't know how much time I've been using..I've been freaking out because I only have eight weeks left and they still haven't agreed to do surgery. My case is complicated, so I won't even go into details of all that, but seriously?! The supervisor said my work is fantastic and I'm more by the book than her..what's the issue?! You want to know exactly how much I'll miss and when it will be over..welcome to my world! I have been trying everything I can think of and everything they suggest..I really don't know what else I can do. Ok, I already feel better just getting that out..I tried to go back and remove all the expletives, so please let me know if I missed any. It's a total rant and I apologize for spewing all over you, but I'm assuming some of you have similar days so I'm going to leave it. I'll take any support or advice anyone is willing to give. Oh, and can I just add..THIS made my head hurt, so add that to your FMLA and smoke it!
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medmisfit
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PostSubject: Re: Just need support..   Sat Aug 13, 2011 12:47 am

WOW, that was a good one..sorry about that! Apparently I'm the only one around this week, so I'm writing to support myself :cry: Just kidding, I have actually calmed down a little..most of the time. I do have a couple of very supportive co-workers, so that has helped. I also found Advocates for Chronic Illnesses on the IH Brain Pain site, so sent them email today. I'm hoping they can at least advise me on how to write the FMLA so I'm protected..ugh, some days it is a total drag!

My employer also wanted to know my plans for when FMLA runs out, so I've contacted the most special of my specialists. My neurosurgeon won't touch me until my shunt stops working and referred me to neurologist. Neurologist kept apologizing because he said he knows I'm in pain, but he doesn't know what else to do for me. He recommends continuing the Botox Injections until he can get me into pain specialist, which is a little disheartening since that's why I was seeing him. My primary care physician is on vacation, but will meet w/ me to complete the FMLA when she gets back. She also said she'd make sure I'm covered..that should be a relief, but I'm still worried. This is really the perfect job for me. It's only phone and computer work, but I have a case load and get to link people to necessary services. I never thought I would find a social work position that I could physically handle and now I just see it slipping away. P----uke! Enough of that!!! Shake it off sistah..on to happier things.. I am attending the IHRF Conference this weekend, so maybe I'll learn something new!!

cheer
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Wylee
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PostSubject: Re: Just need support..   Sat Aug 13, 2011 3:20 am

Oh Julie, I am so sorry I haven't checked in here for a few days. I support you, girl friend!! Unfortunately, the only alternative to FMLA that I know of is SSD. Have you thought about applying? What you are doing now would be considered an attempt at a trial period (a failed attempt, but you sure have tried). When you cannot meet the minimum requirements, which so many of us seem to have in common, then you just may be a good candidate for social security disability. Unless your state is one of the very, very few that has disability unemployment available (I know NJ does - my brother used it), SSD is the only thing left.

I hope to hear a question at the conference regarding working with IH. Perhaps it will be something the experts can explain what in the world we are supposed to do.

It is so disheartening when you do the very best that you can, but do to circumstances that you cannot predict, your IH gets worse. The stress that you put upon yourself to perform when you aren't feeling well doesn't help matters either. Talk about being stuck between a rock and a hard spot. Just not fair. NOT FAIR!
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PostSubject: Re: Just need support..   Wed Aug 17, 2011 2:59 am

Hi Julie. Sorry I haven't been around. I've been having a really hard time recovering from the physical and mental stress of moving, but I think I've turned the corner. I decided that I couldn't live without internet at home, so today after work I picked up a broadband modem an my way home aand got it activated and a plan set up. I hope that they can fix the mess with FMLA and I'm sending you zen hugs. The hugs we'd give if we were there to give hugs.
Hug3 Betsy

My neighbors have this cat and she comes to visit me at my kitchen window. lol
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medmisfit
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PostSubject: Re: Just need support..   Thu Aug 18, 2011 4:22 pm

Thanks ladies! I did find Advocated for Chronic Illnesses on the IH Brain Pain site, and at least confirmed I'm covered. They also gave me some terms the doctor could use in updated form. They said they'll send a letter if issues continue..I just hate to go there because this job is perfect. It's all by computer and phone, so not very physically draining. Plus, it's social work, so I'm still able to help people. I really want to try to salvage this job if I can get out of the pain cycle..it just may not be any fun for awhile..lol.

Linda, I know we've been talking..I do have SSD in my back pocket, if needed. Still trying to hold off and hoping this cycle will end. I'm sure I'll get slapped w/ nasty reality at some point, I usually do!

Betsy, I'm so glad you got the move done and are settling in..that has to be a GREAT feeling!!! I know it was a grueling process, so I hope it all works out.

thank you Take care!
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PostSubject: Re: Just need support..   Thu Sep 08, 2011 5:26 pm

I'm so sorry your going through this huge bhug I can imagine how frustrating it has been for you to find that those you thought were so supportive are not and to constantly be caught between a rock and a hard place and to see catch 22's everywhere you look but I'm sure over time a light will show its self at the end of the tunnel.

Keep fighting but make sure your health comes first! xxx
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