Afraid I may lose my job!!!

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!!!

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

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

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. 

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.

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

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,
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

Thank You ZenaWP!

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

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

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.......