Lupus

GEO · Apr 3, 2004

Are There Any Other Nurses Out There With A Disabling Disease Still Working Full Time? My Question Is, How Do You Do It? I Can't Be The Only One Struggling With This? Geo

NGACAYAN-CORTES · Apr 3, 2004

hi geo... sad to hear your story. i don't have lupus. i am also a nurse. :nurse: i can only imagine what your going thru. just want you to know that i'll be praying for you.

flowerchild · Apr 3, 2004

Hi! Just thought I'd offer some support here. I found out last summer that I have Lupus of the skin. Same as my Dad did at my age. Now he has systemic Lupus. I'm pretty sure mine will progress the same so I do my best to stay healthy as I can now. I know I am somewhat immunosuppressed. I'm frequently sick with what ever is going around. Not fun. So I take a MVI, extra C and hope for the best. The vits do help. I took a job that is less demanding on my body but I'm getting ready to re-enter bedside care. I don't know if I'll be able to keep up yet, I didn't do so well last time I was in the hospital setting. I slept most of my hours and days off. Just laying around with no energy to do anything but rest. Not fun either. I've done really well with the current job, I don't expend so much energy, and have energy on my days off to have some fun. It's been an act of balance. I'll do my best at my new job and hope for days off where I can enjoy life and not just sleep through them. I cope now by using sun screen when outside to keep the flare ups under control. If I forget my sunscreen my skin looks horrible. Sores all over the affected area. I live in Florida, and this is a huge problem as I may find myself outside without protection. Lupus can be a debilitating condition. It can be life threatening when major organs are involved. I just try to keep my body up to par so as to avoid, or delay the worst of it all.

BabyRN2Be · Apr 3, 2004

I am curious about this as well. I don't have lupus, but I do have a mixed connective tissue disease with the prominent feature of Raynaud's. I suffer from the fatigue as well and I'm wondering if I'll be able to do full-time nursing work. I'm in a position in which I'll be able to do part-time, but I would really like full-time. If others have this illness or something like it, could you post and let us know how you do it?

Thanks!

Goodie · Apr 4, 2004

There Must Be Other Nurses Who Are Diagnosed With Lupus And Working Full Time? I Have Been Diagnosed For 5 Years. Had One Flare Which I Recovered From. Did Well For Awhile & Now Have Lupus Nephritis. What Concerns Me Is Trying To Work Full Time, Taking Cytoxan,plaquenil And Prednisone.... Feeling Real Bad!! And Being Worried About Whats Next. What's Next With This Disease And What's Next When I Am Desperately Trying To Do My Job Well. The Job I Have Always Been Very Good At, The Job I Love And The Job I Want To Keep. Being Immunosuppressed And Being An Rn Is A Little Thought Provoking..no Actually..........it's....... Well
Hell, Its Scarry..........any Thoughts From Others?

Hi GEO, My sister was just diagnosed with Lupus 6 months ago and she has had a hell of a time... you name it she has had it and she is only 19. As you probalay know stress doesn't help Lupus out much! Have you though of focusing on an other area of nursing that has less stress and demands? Ie community nursing, working in clinics, insurance companies, diabetic teaching, clinical nurse specialist? Health is what is going to get you through the rest of your life and its no fun feeling crappy all the time. You can change your schedule/stress without giving up what you love. Just a though.

GEO · Apr 19, 2004

:chair: GOLLY, I DO FEEL BETTER!!! I SINCERELY APPRECIATE THOSE THAT RESPONDED. "THANK YOU SO MUCH". I DID NOT KNOW UNTIL TONIGHT THAT ANYONE HAD RESPONDED WITH THE EXCEPTION OF NGACAYAN-CORTEZ. I THINK YOUR PRAYERS HELPED. :) I KNOW I FELT A LITTLE ALONE FOR A FEW DAYS THERE! THE FINANCES IS A BIG WORRY FOR MOST OF US WORKING FOLKS. BESIDES MY REGULAR NURSING JOB, I HAVE BEEN ASSISTING A FRIEND OF MINE WHO IS A LAWYER WITH CHART REVIEWS. I HAVE BEEN AFRAID TO JUMP OUT OF THE NORMAL NURSING POSITION AND TRY THIS LEGAL NURSING FULL TIME. THE GROUP HEALTH INSURANCE IS A BIG THING, AND THE REGULAR PAYCHECKS IS PRETTY DARN IMPORTANT TOO. I REALIZE I MAY BE LOOKING AT A NURSING POSITION THAT IS OUT OF MY COMFORTABLE "BOX", AS IF ANY POSITION IN NURSING TODAY IS COMFORTABLE..IT WOULD BE SO NICE IF THERE WERE GROUP INSURANCES FOR OUR FIELD.....SEPARATE FROM OUR FACILITY. I CAN TELL YOU WITHOUT A TRADITIONAL JOB, ONCE A PERSON IS ILL ITS TOO LATE TO TRY FOR LONG TERM DISABILITY, OR OUTSIDE INSURANCES. HONESTLY WE WORK IN SUCH A HIGH STRESS, INFECTION CENTERED JOB THAT WE ARE AT A FAIRLY HIGH RISK FOR ILLNESS OR DISABILITY. I KNOW I DID NOT EVER EVEN THINK ONCE ABOUT IT, AS I HAVE LOVED NURSING SO MUCH FOR SO LONG. BUT WE DONT HAVE ANY NETS TO CATCH US IF WE END UP ON THE OTHER SIDE, AS A PATIENT. THANKS GUYS, I APPRECIATE YOU ALL!

RNMedic1977 · Apr 19, 2004

I have been an RN for 18 years, and have had Lupus for 3 years. The fatigue is the worse thing for me! I have what I call "sleeping marathons"....I really hate sleeping my days away, but I just can't help it! I no longer work bedside care unless I am helping out in the ER where I work as a Part Time ER Educator, and other tasks. I have been lucky since I had worked at the same hospital so long, and I am flexible. It is not easy...and I feel like giving in some days, but I love what I do! I am on weekly Methotrexate, the max dose, so I hope I can stay "well" on this dose for a long time to come.

I can work with the sore/painful joints, but the severe fatigue is something that stops me cold!

LPN4Life · Apr 19, 2004

My sister loved bedside nursing, she had Cancer, and had to take a sit down nursing job, she was still able to interact with the residents, but I guess it wasn't the same.......sending (((prayers)))and (((hugs))) to you

RN77 · Apr 20, 2004

I can TOTALLY sympathize and empathize with you! I have been diagnosed with SLE for about six years now. I'm at the point that I must only look at jobs that allow a lot of sitting. I've been looking into case management, UR, consultant, etc. I'm not big on legal nursing (for myself), but that is an option. There are many options out there, you just have to look. I really miss the bedside nursing, but it's just not in the cards for me anymore. I'd never be able to run down a hall in a code situation or stand for long periods of time doing some procedure at bedside. It was hard to give it up. I'm between jobs right now and searching hard. I think my limp and generally fatigued look (and feel) are hindering me in interviews, as I've been on over 20 and have no offers. I've never had such trouble getting a job. I don't mean to get you down about this, but you DO have to take care of yourself and get the rest you need. Plus you don't need to be exposed to infectious situations while on Prednisone, Plaquanil, and Cytoxan! (But you already know that.) My best to you, fellow "lupie". My heart goes out to you!

BabyRN2Be · Apr 20, 2004

I have been an RN for 18 years, and have had Lupus for 3 years. The fatigue is the worse thing for me! I have what I call "sleeping marathons"....I really hate sleeping my days away, but I just can't help it! I no longer work bedside care unless I am helping out in the ER where I work as a Part Time ER Educator, and other tasks. I have been lucky since I had worked at the same hospital so long, and I am flexible. It is not easy...and I feel like giving in some days, but I love what I do! I am on weekly Methotrexate, the max dose, so I hope I can stay "well" on this dose for a long time to come.
I can work with the sore/painful joints, but the severe fatigue is something that stops me cold!

Oh, I hear you and I totally understand. It encourages me that you are able to work in the hospital doing part-time work. Hopefully I'll be able to get something like that one day. Wow, that's the thing that gets to me: the fatigue. Most anything else I can work with, but the fatigue is a challenge.

Hopefully a move out of the area might be the thing that helps me. It really is great to know that there are others out there who have the same problem. :)

AnnaN5 · Apr 20, 2004

I can TOTALLY sympathize and empathize with you! I have been diagnosed with SLE for about six years now. I'm at the point that I must only look at jobs that allow a lot of sitting. I've been looking into case management, UR, consultant, etc. I'm not big on legal nursing (for myself), but that is an option. There are many options out there, you just have to look. I really miss the bedside nursing, but it's just not in the cards for me anymore. I'd never be able to run down a hall in a code situation or stand for long periods of time doing some procedure at bedside. It was hard to give it up. I'm between jobs right now and searching hard. I think my limp and generally fatigued look (and feel) are hindering me in interviews, as I've been on over 20 and have no offers. I've never had such trouble getting a job. I don't mean to get you down about this, but you DO have to take care of yourself and get the rest you need. Plus you don't need to be exposed to infectious situations while on Prednisone, Plaquanil, and Cytoxan! (But you already know that.) My best to you, fellow "lupie". My heart goes out to you!

My younger sister who is 17 and will be graduating from high school next month was diagnosed with SLE about a year ago. She is very interested in going to nursing school and I was just wondering if you have any advice on how her SLE might affect her schooling/work opportunities. She is still on Prednisone and I believe still on Plaquanil since her platelets are still jumping around quite a bit. I just thought that she would like to here some first hand experience from other people like her. Thanks guys!