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 Feeling down and out

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beautifulb

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PostSubject: Feeling down and out   Fri Aug 31, 2012 7:33 pm

Hello everyone!!

I heard from John's Hopkins and they can see me the second week of October for a shunt. However, I have been forced to go back to work because FMLA ran out and I was afraid I would subsequently lose my job/insurance. Now that I am trying to work my headaches have become severe with the nausea and flashing bright lights with feeling faint. I am so scared!!!! I feel bad almost all the time. I take the diamox but it is short lived. I am now feeling desperate bc I was told by my short term disability that I have thirty days or I will have to start all over before I qualify for long term disability. ARGHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!! My neck hurts so bad I cannot turn my head to the right. I am on pain medication but it only works a few hours and I am back to square one. I am trying to hang in there for a shunt and I am hopeful they will offer one to me bc the doctors I have seen in Atlanta for the most part have discouraged me from doing it for various reasons. It HAS to be better than this!! HUGS to all of you for putting up with me. I know it's not easy to hear a gripe session but I am at the end of my rope today and I have to work 12 hours tonight. I don't know how I will do that in light of how I am feeling. It is MISERABLE!!!!!

Beth
PS- I am grateful they are seeing me at John's Hopkins, don't get me wrong, I just wish it was sooner. Next month might as well be next year the way I am feeling.
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medmisfit
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PostSubject: Re: Feeling down and out   Sat Sep 01, 2012 5:03 am

Beth, I'm glad they were able to schedule something at Johns Hopkins, but completely understand your frustration & fear..it's such a horrible place to be! I assume you used short term disability to supplement income while on FMLA leave so they've both expired? So you now have to work a full 30 day cycle before you qualify for longterm disability or you have to be off for another 30 days before it kicks in?? Then how long before you can refile for FMLA??? Sorry for all the questions..They make everything so complicated it seems to be different everywhere.

I'm also not sure what you do for a living..is there any way to simplify or modify your tasks? Would your employer work with you & offer a job in another dept or something? Would your doctor be willing to give you pain meds to get you through the work day until your appointment or do you need to consider taking a leave? I know it's a scary prospect, but you can come back to it once IIH is controlled. Another option is to call Johns Hopkins & explain your situatuation..I'm afraid FMLA will still be an issue though. Your insurance should cover you 30 days & offer COBRA..you can also look into a HIPPA policy, but I don't know what any of it would do to disability coverage. Do you have 401k or any retirement package you can tap into? Sorry, just brainstorming. I contacted Advocacy for Chronic Illnesses when I had questions about my FMLA..maybe they'd be able to answer your questions or confirm your options. PM me if you're unable to find their info.

I've been there & it's completely horrifying, but you have to take care of yourself first & foremost! Wishing you all the best, Julie
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PostSubject: Re: Feeling down and out   Sat Sep 01, 2012 5:08 am

Hi Beth, hug


I'm sorry that you have had to go back to work and are not well. I can relate to what you have said about you FMLA running out. I was forced to go on FMLA at the beginning of the year and my boss (pretty much) said that when I came back, I needed to be well enough to NOT miss anymore work! I ended up resigning and lost my insurance?? ❓

If you had to resign would you qualify for Medicaid? I didn't because my household income was too much and so I am waiting to be put on my husband's insurance. Are you married? If so, could that be an option if you resigned? To be added to that insurance.

I would check with your Human Resources about all of the options available to you (i.e. COBRA, etc). I wish the FMLA was longer but it isn't. 12 weeks gets used up quickly when you have an illness like this! Maybe your employer would work with you to let you work some from home?

Since I was forced to resign, I applied for Disability and was awarded it but I didn't know that it is a federal law that you have to be disabled (i.e. without work for 5 full months) before receiving benefits. I know with your pain, you need insurance and medical treatment and, with Disability, you don't get Medicare benefits for 2 years after the Disability.

I really don't know what your particular options are but I certainly would research EVERYTHING before you resign and lose insurance (if you choose to do that). For instance, if you are married, the spouse will have a short window to add you to any medical insurance they have (I missed that window and am now having to wait till January). You could check Medicaid (again, you will have to meet income guidelines.) ❓

If, at some point, you do have to resign because of your health, I would apply for Disability right away and be VERY descriptive on the tons of paperwork. I even put on the paperwork that I could not do dishes because I couldn't stand long enough (that happens when you have no pain management except OTC meds). Otherwise, be prepared to appeal because it is very hard to get Disability awarded. I was so glad when I got my award letter the first time around.

I know this doesn't help you much now. :(


I wish I could give some advice about the shunt but cannot. I want your pain to be managed! I would recommend getting refills on your prescriptions in case, for some reason, you have to resign.


I wish I could help more. I'm sure someone else will have something more valuable for you. But I do think I saw that it is your birthday on Sep 1.


:happy bday 3

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Wylee
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PostSubject: Re: Feeling down and out   Sat Sep 01, 2012 5:35 am

Yes, today is that special day for Beth!!

:happy bday 2

I just wish you were feeling better. I am at a loss as to what to add to what the others have already said. I went on short term disability for 6 months and then had to go back to work for 6 months!! That was holy h*ll!!
I so hope you won't have to wait until Oct. to get relief. Do as Julie suggested, and call JH and see if they can see you earlier. Does your boss know that you are seeking resolution to your issues and maybe he can be a bit more flexible until you are seen at JH?? I hope you are able to work something out.

I too am keeping fingers crossed
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pennyroyal
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PostSubject: Re: Feeling down and out   Sun Sep 02, 2012 7:14 am

When you feel so ill every minute you wait feels like forever. I hope everything gets sorted for you. Hopefully a shunt will provide you with some much needed relief.

Zoe x
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PostSubject: Re: Feeling down and out   Sun Sep 02, 2012 8:39 pm

*big hugs* I'm so glad to hear you were able to schedule something with Johns Hopkins, but so sorry to hear you're having to work through all this pain and suffering for fear of job loss and health insurance loss. I certainly know what it's like to live in constant fear of losing my health insurance, and I've managed to learn a lot about the COBRA law in recent years, so feel free to message me if I can help with any questions. Hang in there sweetie!
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taragazzuolo
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PostSubject: Re: Feeling down and out   Mon Sep 03, 2012 6:22 pm

I am in Atlanta as well... I have gotten treatment very quickly and will be having shunt surgery this week. Let me know if I can help with any referrals here in the Atlanta area.
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