Lupus

68RN · Mar 31, 2006

Wow!! I cannot believe the number of responses!! I,too, have autoimmune problems. I have been on disability for 3 years and also received ssdi on the first go around. For years I would have pain around my chest and went to doctors and numerous trips to ER where I worked and no one really gave me any answere. All my problems started in 1996. It was 2003 following 2 knee replacements that depression and more pain set in. I was diagnosed with fibromyalgia that summer also. Found a good internist and he diagnosed me within 3 visits. I was a charge nurse on an inpatient rehab and the last years there was using my PTO for sick time rather than vacation.l can remember driving to work on the turnpike and thinking many times of driving into the concrete bridge!!! If it were not for my family and grandchildren I do not know that i would not have done that. The depression was killing me and no answere to my symptoms. this October I went to a rheumatologist and was diagnosed with spondylitis and am taking methotrexate. I also was diagnosed with microscopic coliits last spring. This goes along with the spondylitis.I am 58 and female and did not fit the typical picture of someone with spondylitis.

So I fight Depression and pain on a daily basis. I have had some relief with the methotrexate. My pain has decreased. I do not know what the future holds I imagine I will eventually have to go on the very expensive

stuff.

I mourn the loss of my career. Bedside nursing was my love and it is almost all I have ever done!! I do believe the high stress level along with the physical demands of nursing contribute greatly to the development of autoimmune diseases. The immune system goes in overdrive to deal with all it is being bombarded with!!!

It would be great to have a separate forum for us all to cuss and discuss our maladies. I wish each of you the very best!!!

LilRedRN1973 · Mar 31, 2006

Has anyone heard of intermittent FMLA? I will be looking into this. Someone else mentioned it on this board a while back and it sounds like something that may apply to me once my RA becomes moderate to severe. I haven't used too many sick days but my disease is still fairly new (to me). There are day when I'm simply too exhausted to get up and do anything, let alone work a 12 hour night shift in the ICU. Too physical and too demanding on a body that is fatigued.

If anyone has heard of Intermittent FMLA or knows where I can find more information about it, I would greatly appreciate it.

Melanie = )

rehab nurse · Mar 31, 2006

Has anyone heard of intermittent FMLA? I will be looking into this. Someone else mentioned it on this board a while back and it sounds like something that may apply to me once my RA becomes moderate to severe. I haven't used too many sick days but my disease is still fairly new (to me). There are day when I'm simply too exhausted to get up and do anything, let alone work a 12 hour night shift in the ICU. Too physical and too demanding on a body that is fatigued.
If anyone has heard of Intermittent FMLA or knows where I can find more information about it, I would greatly appreciate it.
Melanie = )

yes, i take fmla intermittently. pm me and i'll give you more info. but basically, i'll tell you. you can take leave in increments of minutes, hours, days. doesn't matter. what you will need is a book or a calendar (what i use) and write down exactly when you call in using that excuse. you cannot be disciplined for your absences under fmla. you get 12 weeks unpaid. it could be like i use it, i work part time 5 days a pay period, usually calling off once. that one call off goes to my fmla time. does that make sense? like i said, i have been on it the last year, and about to refile soon. pm me if you want more info

here is where i got all my information. believe me, i have fought through he** to get it and not be reprimanded by my employer. but this is legit, and they can fault you for it. i use it exactly what it's for. on the days i am in too much pain, or exhausted.

http://www.dol.gov/dol/allcfr/ESA/Title_29/Part_825/29CFR825.200.htm

MommyandRN · Mar 31, 2006

wow, so many of us!

rehab nurse, I'm sorry to hear what you go through. I know it's hard to give up what you love doing but have you thought about a different nursing job? The good thing about nursing is that there are SO many different avenues you can take. What about a desk job like research, case management etc? Or quality improvement. Also the areas of teh hospital where you do less strenuous work (in my opinion the cath lab or pacu etc) or switch to 8 hour rather than 12 hr shifts.

I myself am close to being diagnosed. I only work pool so I don't think I qualify for FMLA. I just have my hourly rate with no benefots. I"m currently critical care, 12 hour shifts. It is phystically exhaisting as well as risky with infections etc. I think it may be a good idea to become a stay at home mom soon if I do indeed have lupus. I would miss nursing so bad though. Hopefully if thats the case I can find something else thats less strenous or that I could do at home ?? Who knows.

sphinx, BSN, RN · Apr 2, 2006

I don't have lupus, but I do have RA. I've had a rough time of it, and never been in good control. A couple months ago I added Enbrel to the mix, and that's helped only a bit. I was on short term disability from work for 2 months and went back for my first day, I am on 4 hour shifts for the first month but then back to three 8 hour shifts per week. I used to do three 12's but couldn't do it. Nights are bad for me as well, and I have a doctor's note saying I should not work nights but my manager says she needs me and nights and if I want to not work nights I have to transfer somewhere else that won't rotate me to nights.

Even being back 4 hours was hard. I've developed bursitis on top of everything, so had some pain, move very slowly now esp as I am trying to keep from limping as my screwy gait contributed to the bursitis. After I got home I slept for 4 hours, took a short nap before supper, and went to bed early. Then yesterday I was exhausted all day. Fatigue is just so, so bad.

I do a warm water aquatics class twice a week for people with arthritis, and have started PT. I try to walk short distances when I can. I doubt I'll be able to continue what I am doing now. Thinking of job searching just makes me want to take (another) nap.

lorster · Apr 2, 2006

Sphinx, I don't think they can make you work nights if you have a note from your doctor. I think that you should present your manager with some information on this disease to make her understand just how everything effects your health. The bad situation is that nights will stress you and moving to another unit and having to orient to that new environment will also stress you so there is no winning here. Your best bet is talk to your manager about how these changes will effect your health and to keep you healthy...and working...she needs to understand this. Remember, you have a disability now and the ADA will protect you by making your employer accomodate your disability in any way they can. If they don't, they are in violation of a federal law. I don't think working all days is a huge favor to ask, especially when good nurses are hard to find these days. I was diagnosed with RA in February. I have a high RF and high CRP. I have horrible ankle pain and swelling which makes it difficult to be on my feet 12 hours a day. I suffer alot of respiratory infections(I don't smoke or live around smoke). I have no energy and it takes 2 days to recover from each 12 hour shift I work. I swim 3 days a week to keep my joints flexible and I eat much healthier than I used to. I start Plaquinil after my eye exam next week. My biggest fear is not knowing what will happen next. I don't know if I will wake up some morning and not be able to get out of bed at all. No two people have the same symptoms and I think that is what makes it so hard to treat. All we can do is take one day at a time. Make the most of our good days and pamper ourselves on the bad ones. I have a friend who is trying to get disability right now and has been denied so I know that it is a difficult process. In my personal opinion(and I'm probably gonna get some feedback on this)I feel that if more men had this disease, it would be taken more seriously by insurance companies and others. But that is just my opinion. Until that time comes, we just have to work as long as our bodies will allow us and then....I don't know what happens after that. I just hope to be able to work until I can retire. Keep your chin up and make each day the most you can.

lorster · Apr 2, 2006

Oh man you guys. I read my post...after I posted and I realized that I said something that may offend lots of nurses but I didn't mean it the way it came across. (did I also tell you that I have foot in mouth disease) I didn't mean that good nurses are hard to find, I meant that once a nurse has worked a unit for a long time, it seems much more advantageous for the employer to keep that nurse on that unit rather than training a new nurse. Sorry if I offended anyone and I'll try to get in and see someone about my foot in mouth disease. Huggs.

sphinx, BSN, RN · Apr 2, 2006

I was told (whether this is true or not) that with ADA they have to accomodate me with the doctor's note but it is the hospital that has to accomodate me not the unit, so a transfer is a valid accomodation. I've spoken to her and she seems to know the score, acts all sympathetic. I've been off for 2 months and will not be on nights another month when I am doing 4 hour shifts, if they've managed all that time, why is it so important? Anyway, I've also been thinking my own health.......I'm on methotrexate and now Enbrel. I've always been very careful with precautions, and even more so now. But I guess I am starting to worry. My first day back and one patient has ESRA and the other has VRE. I work in an ICU and a lot of our patients end up with "bugs" despite our best efforts. We've not had a pt with TB since I've been there-that I know of. I worry about that now because of the Enbrel. Precautions mean nothing if you are exposed before the infection is discovered...which happens, eh? So you see, I'm all mixed up!

lorster · Apr 2, 2006

Yeah, you may be right about that. It would be the institution as a whole that would have to accomodate. The only problem I would see is if the other nurses on your unit felt you were getting special treatment. But if they understood your situation, it may not matter to them, afterall, wouldn't they want their coworker to stay healthy and on the job so they didn't have to work short. I guess maybe I see it differently than many. If you have to work nights...I guess I would work them all in a row so that you don't have to do so much adjusting. I work on a med/surg floor and work most of the time with peds. You know how many little bugs they are packing around with them. Not to mention all the other resistent and non resistent bugs that we have. I also take precautions now much more than I used to and I worry that I will get one with my weakened immune system. Good luck and I hope that you can stay on day shift and stay healthy. Please keep me posted.

KnarfKS · Apr 4, 2006

The funny thing is that it was my SLE diagnosis that got me into nursing. I was working construction, and thinking about medical work. Then a month in the ICU with PE's and severe glomerularnephritis made me think nursing. As well as a dr. telling me I can't be in the sun for prolonged periods anymore.

I'm glad I'm in nursing though, I hated construction, and I was looking for a job that was more fulfilling.

I'm an oddball, white and male...that may be the reason I went 10 yrs without a diagnosis.

bethin · Apr 4, 2006

After reading all these posts I regret cancelling my appt. with the rheumatologist. Now I need to reschedule.

I have ulcerative colitis and Crohn's, both autoimmune disorders plus mitral valve prolapse. Oh, and I'm only 26. I had a positive ANA and was scheduled to go to rheumatologist for more blood work. My hair falls out in clumps. I take a lint brush to get all the hair off my sheets and pillowcases. I have esophogeal spasms, hives, severe joint pain, swelling, rash at times on cheeks and severe fatigue. I've also developed photosensitivity in the last 6 months. My grandmother has lupus. I guess I cancelled out of fear. God knows I don't need another diagnosis.

Making another appt. tomorrow.

SthRNBelle · Apr 4, 2006

ok guys...I am another young one with some type of autoimmune disease. I have fallen between the cracks into the group of "mixed connected tissue disease". I have a positive ANA with a high speckled titer pattern, but the other definitive test were inconclusive. However, I don't feel as if they are taking my symptoms seriously. I have extreme joint pain, hips, knees, leg pain and back, shoulder pain. I have esophageal spasms at times and now my hair is falling out even worse. I also have keratitis (spelling?) of the eyes often. I have mitral valve prolapse with tachycardia (controlled). I have had joint pain for 4-5 years and within the past year or so my new PCP began running the test. So...I am on Plaquenil 200mg BID and Flexeril 10mg BID. But I still have the joint pain. I drink lots of water and exercise and that seems to help. I just don't feel like the Rheumatologist is being very proactive in my case....what do you guys think? What do you know about "speckled ANA patters?" Thanks in advance!