off for summer--so worried about returning to work

[angels04]

Hello Everyone and thank you all for being part of this group!!  What would we do without each other?

I currently work in the school system so I am off for the summer. From Jan-June, I worked 4 days a week with Wendnesdays off to rest-using FMLA. I told my boss that I would return in Sept full time. So far this summer, I have been extremely tired-sleeping late everyday. Today my joints are screaming and I am beginning to wonder if I will be able to return full time. I am not bad enough to qualify for disability through my work. I dont pay into social security since I've worked for the school so I wont get ssdi...I have to work/have an income to help pay the bills and keep the house...I am feeling so stressed and overwhelmed. I have considered leaving the school and doing homecare (I am an RN) because I can set up my schedule so I can get rest--but I am afraid it may be more physically demanding than I can handle and I wont have my school job to go back to...does anybody have any thoughts or ideas?? Just looking to vent and get some feedback. I dont want to worry my husband that I cant keep up...   

[Joe S.]

Normally I say "Work as long as you can. Be kind to yourself."
Sarcasm: "Go to work for Walmart. They will tell you every way you can get free health care".

[susanep]

It is difficult trying to figure out what to do, especially when you are so tired and sick. Which job would be less stress with the most understanding boss?

I would go from there, and then over time I think your body may be the one to decide.

susanep

[slccom]

If you are over 55 and your husband is paying into SS, you are eligible for disability from them, for what it is worth.

I'm sorry you are having such a bad time. I hope things get better, and will return with more ideas tomorrow.
Sharon

[Ark mom]

Hello!  I'm sorry that you are having troubles.  I feel your pain with you!  I used to be a teacher before staying home with my kids, all before knowing I had this crappy disease.  This year I am going to only be substituting on days that I feel good and that my girls are with their grandparents or such. 

Have you thought about revamping your meds at all?  I have had pretty bad fatigue for years, which has been much worse the past 4 months due to a huge flare.  I started Savella recently, and my fatigue is so improved that I can function almost normally.  I'm not yawning all day.  My afternoon slump is no longer a marathon 3 hours on the couch.  I'm even on the lowest dose (25 mg a day).  Anyway, I am not telling you that you need to get on that drug in particular, but perhaps making an adjustment might help.  Before starting Savella, I worried that I would never be able to work again, and now I think I can.  I could just cry. 

If trying to work full-time is your goal, then tweaking meds might work, but if that isn't an option then perhaps find a part time job in the district instead.  You could always go back to full-time at another time if things improve.  Take care! 

[iraisin]

Well, if you're an RN and you're already in with the district, what about being a school nurse. That way, you're not dealing with 30 kids at a time (which is stressful). I'm sure you're going to have busy days, but in general a milder schedule, no grading papers all night and that sort of stuff.

Is that a viable option?

[Belsey1]

Angels,
I'm faced with pretty much the same dilemma.  From February through middle of June I worked on an "intermitten" FMLA from the school system, meaning I came to work when I was able and stayed at home when I wasn't.  I left work for the summer with the intentions of "getting better" this summer...whatever that looked like for me.  I signed up for water aerobics, lined up some one to help me get my house back in order from months of nothing being done, made a list of fun, inexpensive, stress free activities to do, checked into getting a massage or two, etc.  Well, the summer is quickly starting the downhill slide and I have been able to go to water aerobics a grand total of 3 times, went on one short trip to a library/museum but couldn't finish the tour because my husband got into trouble with his breathing.  My housekeeper fell through, unexpected expenses have eliminated any chance of massage or more fun activities, our air is barely working and my rheumy left the practice...you get the picture so I won't bore you with more.

Now I am faced with a fast approaching new school year, feeling almost as bad as I did when school went out.  I don't know what to do....start a new year in this condition, try for disability, start the year on FMLA similar to what I did last year.  Luckily I do pay into SS so I have that option.  What school system do you work in that you don't pay into SS?  I have never heard of that.  What about young people...20 or so, who have never worked and draw disability?  I know there are some in our neighborhood who do.  I am not asking to be nosey, just wishing I could offer some advice, do font feel like you have to answer those questions. 

Hoping you find answers and if I have any grand ideas I will let you know.

[angels04]

Belsey
Thank you for your response. I work in Wallingford, Ct we dont pay into Social Security because we pay into a pension. I guess you cant "doiuble-dip"
I never thought of the 20 something people who collect....I dont think I am bad enough at this time to collect. The fatigue is what gets me the most but the joint pain is kicking in this summer. I can work full time..but I wont get anything else done..its work eat sleep... I just keep getting myself stressed out trying to figure out what else to do...I understand your dilema... its so hard to know what the right thing to do is. I cant predict how I am gonna feel tomorrow let alone in Sept.
Best wishes to you...let me know what you decide to do

[lostone]

I have never seen it where you can only pay into a pension and not SS,, I worked for a pension but I also paid into SS,, You better take a look at one of your pay stubs,

[warmwaters]

It's very common that government jobs at town, state and federal level do not pay into SS.  Not all, but many.  Instead there is some pension plan.  You are lucky that you can.  However, most of those also have some private disability model, too.

I have never seen it where you can only pay into a pension and not SS,, I worked for a pension but I also paid into SS,, You better take a look at one of your pay stubs,

[Belsey1]

Lostone, I was going to say the same thing about pension and SS.  I teach in NC and we pay into SS and pension(no choice...we have to pay). 

Angels04,  I know what you mean.  I never know from one day to the next how I will feel.  I went to rheumy yesterday in excruciating pain in neck, jaws, shoulders, ears, head.  He brushed it off as Fibro...didn't even want to discuss Sjogren's.  He was at same practice I had been going to but was a different doctor as the one I had been seeing is leaving.  He acted like he doesn't "believe in" SJogren's.  He questioned how I was diagnosed and said the positive lip biopsy means nothing since I am not presenting with dry eyes and mouth.  I have not had very much trouble with eyes at all, thankfully....but my mouth is a different story and I told him that.  It just wasn't dry yesterday.  He would not write prescription for my pain meds I was prescribed by the other doctor I have seen there.  He questioned my anxiety medication...luckily it is prescribed by my PC doc.  He only wrote a prescription for one month of Flexiil.  I am so frustrated with doctors right now.  It is not so much the not writing prescriptions as acting like Sjogrens doesn't exist.  As a matter of fact, writing this has made me decide something.....I am calling there right now and asking about there other doctor in the practice.  I will not pay money again to be belittled.  Later folks..

[Reanne]

I can relate to how you feel. I am supposed to start back to work in 2 weeks.  I got a dose down medrol pack yesterday.  Hooray!  I will you all the best.  Good luck.

[jazzlover]

If you are over 55 and your husband is paying into SS, you are eligible for disability from them, for what it is worth.

-
Are you sure?? I have disability from teacher retirement, but it's hard because I don't get the benefits others get with SSDI. It would really help if I could qualify for both, but I don't think that's possible, is it???

My advice.... do what you feel your body needs. Have you worked long enough to take early retirement or disability thru your district??

[jazzlover]

I have never seen it where you can only pay into a pension and not SS,, I worked for a pension but I also paid into SS,, You better take a look at one of your pay stubs,

-Very common in Texas. VERY. I never worked for a district where I had the option to pay into SS. We DID pay into Medicare though. There was one nearby district on an Air Force Base where you could pay into SS and your pension plan. Many liked to work there so they could do that.

[slccom]

If you are over 50, disabled, and your spouse is dead you can get SS survivor's benefits. I wasn't clear before. Sorry! Sharon