Afraid I may lose my job!!!

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ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/22/2009 7:08 PM (GMT -7)   
I've been a good employee at my job writing proposals for 3 years. I had to go on disability (through work) the last week of April this year, after being diagnosed with RA and dragging myself to work in absolute agony the last few weeks I was there. I started MTX once a week on June 20-5 weeks ago (after a battery of testing from stem to stern to rule out any other causes for my pain/symptoms), and at that time my rheumy said I would need to be off work at least 3 months, which I told my work. I don't think the MTX is really working yet, as I still have pain, although it's lessened, and I sleep 12-16 hrs/day. I read it can take up to 3 months to kick in. Can anyone tell me how long it took for your MTX to kick in, and how you really knew it was working?

I saw my rheumy yesterday with increased pain from decreasing the prednisone too much too soon, and he put me on a shock schedule of prednisone for the next 3 days to knock out the inflammation, then I'll go back to my old dosage, so maybe the prednisone is making me panic, but I asked how much longer I would need to be off work and he said "3 months, at least". I don't know how to tell work, since I told them I needed to be off 3 months on June 9, which would have put me back in mid September. Now it's going to be mid October. I'm scared to tell work but it is what my doctor recommends, so I need to tell them.

I'm going to start Remicade in about 2 1/2 weeks (or as soon as Humana approves it), and since it's supposed to be this wonder drug, I wonder why I need to be off work so much longer. Question for my rheumy, but if anyone has any ideas why this would be the case I would be happy to hear them.

I'm just so afraid to tell work that I need more time off. I work at corporate Headquarters (only 10 people) and my boss, the VP, hasn't been responding to my emails. However, the president (his boss) has, and he just keeps telling me to "Stay the course", so I know he's on my side, and he makes the ultimate hiring/firing decisions, although my boss has his ear. I'm just scared, scared, scared and need some positive feedback please!!!
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety

Post Edited (ladywriter) : 7/23/2009 2:39:09 AM (GMT-6)


Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 7/22/2009 7:56 PM (GMT -7)   
Hi, have you read the "American Disability Act". Under that Act people with medical problems such as asthma, adhd, fibromyalgia, and other conditions can ask his/her employer for accommodations that will assist people with his/her job. Accommodations could be: Instead of arriving at work at 8, maybe 9 would be better for you.

The one thing I like about this act is that it can make an employer think twice about firing someone.

A few years back when it was hard to get a flu shot I had made arrangements to get the flu shot at the county health center. I needed to take off 30 minutes early from work. My boss said, "NO". and that he didn't care about some act. I left early and that evening filed a complaint against him for discrimination. Unfortunately, for the boss when it was time for him to get a promotion he did not receive because the complaint I had filed against him.

Good Luck
 


SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 7/23/2009 11:29 PM (GMT -7)   
Hi ladywriter,
Im not sure why your Rheumy wants you to have time off while on MTX and awaiting Remi, I have heard other people taking both not needing time off. Could it be something to do with the amount of pain you are in and waiting for the meds to kick in for relief? Do you feel like you could be at work during this period, if so mention this to your Rheumy.
I know the feeling when you take time off from work and even when nobody says anything you still feel like you are letting them down.
Hopefully the meds will kick in soon and give you relief :)
Jo

golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 7/24/2009 12:24 AM (GMT -7)   
I'd wait and see how you go on the biologicals. For some people it can bring overnight relief, others it takes longer. So wait and see, you could be one of the lucky ones. I t took about 6-8 weeks for humira to work for me but I can work on it. Still get a bit swollen at the end of the day and if its particularly busy at work I can really get exhuasted but I work through it all and have a sleep once I get home!!! Hired a nanny to help with the kids and I love my independence. Goodluck, let us know how you go on the remicade, golitho

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/24/2009 2:52 AM (GMT -7)   
Thanks so much for the replies. I looked up the ADA Act, and it looks like it would be illegal for my work to fire me because I'm sick and need time off. We'll see. I wrote the email letters to my bosses tonight, letting them know I may need more time off, and got so depressed I started crying, feeling sorry for myself, and that hasn't happened for weeks. It must be the shock dose of prednisone I'm on now, making me so emotional, but thinking about all that's happened in the last 2 months, all the tests and procedures and new meds, it's just a lot to handle, and it's hard, especially since I'm basically alone. I guess I'm entitled to feel a little sorry for myself every once in a while. I'm so grateful that I have a place where I can express this, and you guys understand.

The MTX seems to be working somewhat; last week when I couldn't take it due to a bacterial infection, I noticed a huge difference (increase) in the amount of pain and exhaustion I felt. I still don't feel like it's really kicked in though. The day after my dr appt, my fingers were all twisted when I woke up, and it took about a half an hour to straighten them out. I don't have a very big sense of relief from the MTX. Maybe I'm not on a high enough dose. I've just started taking 10 mg/week, up from 7.5. I've only been on it for 5 weeks. I think just I need more time.

What I hear about the Remicade is that it's a wonder drug, that it will make a huge difference in how I feel. It seems that if it's that great, I should be back at work sooner.

It could be my chronic pain and/or my psychological stuff that is making him hesitant to let me go back to work sooner. All I know is that I honestly don't feel ready yet. The exhaustion and amount of sleep I need is much greater since I started having RA symptoms, so I don't think it's related to the other meds I take. My rheumy keeps telling me it's the RA, be patient, and he's really good, so I believe him.

One of his staff told me about a patient who'd been in a wheelchair for 11 years before she came to see him, and his treatment got her walking again, so I feel I've been blessed with a very skilled doctor. I trust him, which is saying a lot, because I don't trust doctors easily.

Thanks again for your support. ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 7/24/2009 11:14 PM (GMT -7)   
It sounds like you have a great Rheumy ladywriter, you are very lucky. Do try to follow he's instructions and dont work till you are feeling yourself again, sounds to me like he could see you needed the break.
Take care and keep us updated.
Jo

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/28/2009 10:57 AM (GMT -7)   
I can't tell from your email if your company has enough employees to qualify for FMLA (your corporate office doesn't, but it depends on how many total employees your company has).  If you can, file for FMLA.  You will have 12 weeks off that your employer cannot fire you for.  FMLA is much easier to use than the ADA.  The ADA has recently revised their definitions so that more qualifies, but it's still easier to argue that someone/something doesn't qualify.  For FMLA, you should just need to fill out a request form of some type (some companies will accept email requests or letters also) and have your doctor fill out a certification. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/29/2009 3:10 AM (GMT -7)   
ZenaWP,
My company has a total of at least 60 employees at the branch offices, so I know I could use FMLA. The only problem with that is that I've already been off 12 weeks, and my rheumy thinks I should be off another 2-3 months, so I don't know that having an ok for 12 weeks would do me much good. Do you think it would help to do it anyway?
ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/29/2009 9:33 AM (GMT -7)   
Ladywriter, if you didn't ask for FMLA and were not told by your company that you were on FMLA for the last 12 weeks that you've already been off, then that shouldn't count towards FMLA.  It was their mistake not to make you use FMLA for that time.  Going forward, you should definitely request it.  At least you will have 12 weeks of job protection...that should be enough for the 2-3 months additional you will be off.  Or, if your rheumy and company will allow you to work intermittently some during the 2-3 months, you can request intermittent FMLA and then hopefully you will have enough FMLA to get you through all of this.  I'm in HR and I'm on FMLA myself and I highly recommend it...no matter what company and what your job is, it's always smart to protect yourself.
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 7/30/2009 10:29 AM (GMT -7)   
ZenaWP
Hi, thank you for mentioning FMLA I did a search on it and you're right it would best to file FMLA than go the ADA route. Just one question under FMLA are you allowed to use your sick leave and personal leave?

Thank you

Stari
 


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/31/2009 7:26 AM (GMT -7)   
ZenaWP,
(Excerpt from Final Regulations effective January 16, 2009) To be eligible for FMLA leave, an employee must have been employed for at least 12 months by the employer and for at least 1,250 hours of service with the employer during the 12 months preceding the leave, and be employed at a worksite at which the employer employs at least 50 employees within 75 miles of the worksite.

Unfortunately, my company only employs 10 people in my state (CO). Our remaining employees are in TX and CT, so it doesn't look like I'm eligible for FMLA. Thanks anyway.
ladywriter

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/31/2009 8:45 AM (GMT -7)   
Hi Ladywriter, I didn't realize you are also in Colorado. I'm sorry to hear this is so stressful with your work situation.

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 8/1/2009 1:52 AM (GMT -7)   
I'm taking the spiritual high road and having faith that my Higher Power won't let me end up homeless. As a LAST resort, I could always go and stay with my parents (they're in their 70's, but Mother has said they'd always have a room for me). It probably won't come to that, but it's my ace in the hole. I just pray that it won't come to that, and it probably won't. The reality of the scope of this disease is hitting me hard. I try to be optimistic, but tend to see the worst case scenario.

I've just worked so hard to establish myself in my career that I don't want to imagine not being able to do it. Plus, I'm scared to death of losing my health benefits. If it comes down to it, I could start writing fiction or become a grant writer and make a living that way, which may be my destiny all along. Who knows? It may be what I should be doing, and this is the way I am being directed into a new career. I just don't want to lose my health benefits-that's my main concern.

I'm moving into a much less expensive apartment in September, so I can start saving some money for a rainy day. I haven't found a place yet, but have several possibilities. Ideally, my treatment with Remicade, which starts next week, will put the RA into remission long enough for me to save a considerable sum of money to live off of should I become disabled again, as my short-term disability through work runs out in October. In the meantime, I'm taking things a day at a time. It's all I can do right now.

Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 8/1/2009 2:10 PM (GMT -7)   
ladywriter,
Just curious but have you put in for disability?
 


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 8/1/2009 10:30 PM (GMT -7)   
Stari,
No, I haven't applied for disability. My rheumy seems so positive that the Remicade I will start next week will put this into remission. I thought applying for disability from Social Security would be premature at this point. Lately I haven't had as much pain (except for today) and my fingers haven't been twisted for a few days now, so I think the MTX might be starting to work.

I guess I have the feeling that there are a lot more people who are worse off than me with RA that applying for disability isn't necessary yet. But I know it can take a long time from the time you apply until it is awarded, so maybe I should. I just don't know what to do other than follow my rheumy's orders, take my meds, and try to be optimistic about the outcome. Am I being naive?
ladywriter

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/5/2009 12:20 PM (GMT -7)   
Sorry, ladywriter, I didn't realize from your first posts that the employees were so spread out in your company. 
 
Stari, sorry for the late reply.  It's up to the employer on using your leave time while on FMLA, but from past experience, most places let you/want you to use it.  I've never worked anywhere that did not allow you to use it.  My current employer actually makes you use all of your available leave time before reporting any unpaid time off.  So, you'd have to see what your company's policy states or ask HR/your supervisor to be sure.  Where I work now, I can choose which leave time I want to report first while on FMLA - sick, vacation or personal.  Most people use sick first and then vacation, but some do half and half.      
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 8/5/2009 12:27 PM (GMT -7)   
Thank You ZenaWP!
 


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 11/1/2009 2:37 AM (GMT -7)   
I've been very ill with repeated infections for the last 10 weeks, so I haven't bothered with email because it was just too much for me. I lost my job. I just found out Wednesday.

You'd think I'd be crying, but so far, no tears. Maybe I'm just too worn out. I'm applying for long term disability that is supplied by the company I worked for, and stand a very good chance of getting it. I don't know yet how long it lasts, but anything would be a help now. I've been receiving short-term disability since the end of April, and it just ran out, so we're transitioning into the long-term disability.

The company has actually treated me pretty well. They extended my time off well after the initial date of July 24 as my first estimated date of being able to return to work. But now that my rheumy says I should be ready to return to work in a month or 2, well, the company just can't hold my job open for me any longer. I understand. I'm not angry with them. I need to call them, and the disability insurance company, on Monday in order to tie up loose ends and cover my bases. I've spent the past few days completely vegging out-laying around in my nightgown all day, just completely isolating and feeling sorry for myself. I think I have that out of my system, and I'm ready to face the world again.

I'm kind of confused right now. My rheumy seems certain that we can get the RA into remission, but I'm wondering if I should go ahead and apply for Social Security disability now, which seems to anticipate a dreadful future. But there's no guarantee that I'll stay in remission, if and when I get there. Can you, or should you even apply for SSDI when you feel good? I should probably mention that I'm not allowed to drive anymore, for the time being, because shortly after I began having all the trouble with infections back in August, I've "nodded off" (fallen asleep at stop lights) in traffic 3 times. I' m scheduled to have a sleep study done for sleep apnea, but it seems odd that it didn't start until I started having these near-constant infections. I don't know what to do about this or applying for SSDI, and would appreciate any ideas. Thanks very much for being here.

Ladywriter

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/1/2009 5:12 PM (GMT -7)   
I'm so sorry to hear about the loss of your job, Ladywriter. Your story hits very close to home.....I'm just beginning to reach the point where I may not be able to go on at my place(s) of employment (I have two jobs). I didn't make it into the office at all last week because my health issues, which is sort of OK because I have a telecommuting agreement with them, but I'm only supposed to telecommute 50% of the time. I too stopped driving about a week ago, for exactly the same reason....I was starting to nod off on the freeway! I do have sleep apnea but I sleep with a CPAP machine, so I really don't understand it. I also have vertigo and blurry vision so it would really be irresponsible of me to drive at all at the moment. I'm in the process of getting a disabled ID card for the transit system so I can ride the bus to work.

Just my own opinion here, but I think you should apply for SSDI immediately. You're absolutely correct in that there are no guarantees in life, other than death and taxes. It can take months or even years to get approved, sometimes after repeated denials, so you must get the ball rolling ASAP. My youngest daughter has lupus and Addison's disease and hasn't been able to work for more than two years; she was denied when she first applied in 2007 but she got a lawyer, filed an appeal and now has a hearing scheduled for Nov 19th. She's been without income all this time, except for a few months of unemployment insurance. She has lately been feeling a little bit better, but I cautioned her that when she answers any questions in court about her abilities to work, she should think of the worst days that she's ever had and construct her replies based on those scenarios.

Autoimmune diseases fluctuate over time; the symptoms rise and fall like the tides, except that they aren't as predictable as tides, unfortunately! We never know from day to day how we will feel, especially if we have multiple autoimmune issues. I know your doctor is trying to be positive and encouraging, but you need to make sure you will be OK financially if you don't feel good enough to work.

Good luck with everything....please keep us posted!
(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/4/2009 7:46 AM (GMT -7)   
Hi Ladywriter...I'm sorry to hear about your job situation.  I read your post and your rheumy feels that your RA can be put into remission?? Did he explain exactly what that means? I have asked countless times of my own rheumy in desperation, if I will ever go into remission and he has said "no".  I've been told that it is possible to get the symptoms under control, but there are only rare cases of a complete remission.  RA is always there lurking no matter what, and I agree with nasa that you should probably think about applying anyway, what can it hurt? As for drifting off when you shouldn't, I have also had this as well and there have been a few times I have pulled over to "rest my eyes", and those were the times without any use of sleeping meds or pain pill use.
 
As nasa mentioned it is true that we will never really know how we feel on any given day, and as the years have passed I know that the RA has progressed for me, even with meds.  Now there are days when I just feel like I have the flu without the flu, and I'm always exhausted like I'm wading through quick sand.   I know there are those days when you don't "feel that bad", we all have those, but please do what is best for you.
 
I wish you the best!

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 11/6/2009 11:32 PM (GMT -7)   
nasalady and momto3,

Thanks for your support. It's nice to know I'm not alone, even though it's not the greatest thing to share with someone. Since I can't drive for now, I've been figuring out the bus system, and find that it makes me extremely tired to ride the bus just about anywhere. I usually come home and collapse after a day of bussing it.

Yesterday I talked with the insurance company that supplies the disability insurance, and another insurance company that is a designated liaison between me/my company and the disability insurance company. I gave the disability insurance company a very accurate, detailed, and thoroughly depressing description of my physical condition the past several weeks. I don't anyone would reject my claim after reading that. But just in case, my pain management counselor (for my chronic pain-a separate issue) wants me to show my policy to some lawyers he knows ASAP, so I'll do that next week.

I was going to do it today, but I woke up late afternoon throwing up/diarrhea for a couple hours ( presumably a reaction to some of my meds-it happens once or twice a week), and after I shut off the overflowing toilet and I quit puking, I took my pain meds and sat quietly with my kitties on my lap for a couple hours, until I felt better, but by then it was too late to call anyone.

As far as applying for SSDI, someone told me you have to be out of work for a year before you can apply. Anyone know if that's accurate? Thanks so much for your support.

Ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/8/2009 10:08 AM (GMT -7)   
Hi Lady...I'm sorry, I have no idea what is involved in applying for SSDI.  I had a cousin many years ago get something similar even though she did not have enough years worked, she was only 19 but had scoliosis and a mental health condiditon that qaulified her.  I'm sure someone will come along and have an answer for you, and hopefully this isn't the case.
 
I know you live in CO and I can only imagine that riding must be an ordeal, we live near one of the larger towns and it has the transit system and my children have had the opportunity to ride them, and they think it great, but if you have to rely on it to get to your destination on a daily basis, then I'm sure it must be taxing at best.
 
It sounds like you are doing everything that you possibly can to cooperate and get the ball rolling in the right direction, try to stay positive and keep your chin up!
 
We are here for you if you need us!
 
 

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 11/8/2009 3:04 PM (GMT -7)   
Don't belive everythinh you hear.Check it out on SSDI ASAP!I don't think u need be out of work that long if at all.Ask your Dr to help you Mine did & I got SS/Medicare at age 60.......
SnowyLynne


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/9/2009 6:28 PM (GMT -7)   
Sorry to hear you lost your job ladywriter. Hopefully you can get the full disability (Im from Australia, so Im not sure how you go about doing that in the US).
I agree with momto3, I have never heard of remission for RA, but a lessening of symptoms would be nice.
Take care.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07

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