Lupus and work

what extent do you think Lupus has caused memory loss for you
0
none - 0.0%
10
some - 66.7%
4
signicantly - 26.7%
1
majorly - 6.7%

 
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honey007
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 4/16/2009 9:31 PM (GMT -7)   
I would like to hear from people who have diagnosed SLE and are still working. I am interested in finding out how you cope and manage with the demands of a working life. And how your family copes?

LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 4/17/2009 5:30 AM (GMT -7)   
Hi Honey007, I am still working as a mental health caseworker and in truth I feel the stress is more than I can bear some days. After a long hard stressful day, I am in a terrible flair. My cheeks are red. I feel like I have the flu. I begin to have inflamation in my heart area and lymph nodes. The brain fog gets bad too. I am presently on a 4 day work week through FML. This is hard to accept because I used to be a workaholic. My supervisor struggles with this I know. I long to be in my bed, most of the day, but I press on until I can't any longer. I take 10 perscriptions presently, just to function.Good luck with your survey. Tammy

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 4/17/2009 7:36 AM (GMT -7)   

Hi! Tammy and Honey,

I am almost 54, a R.N. and only working part time, and solely because of lupus. I worked as an ICU nurse for 21 years and then in a nursing home, and taught, too. I had to quit at least one of my jobs or die. I could no longer run in 4 directions at once, was falling alot, and publicly, and was especially grateful to be diagnosed with lupus rather that thought to have an alcohol or drug problem. You can imagine. I am blessed in that I was offered a .5 FTE teaching position that suits me perfectly. I am on 5mg of prednisone that keeps me functional. I couldn't work without it. My doc. is also a blessing, and always asks about my work hours. In addition to having a great lupus specialist, my husband is awesome. He is my greatest blessing. Before I started my lupus meds, I was so sick, all the time, that I came to the realization that I couldn't go on much longer like this. Unlike many of us, I had abnormal labs to give clues. After 6 pregnancy losses and hi antiphospholipid antibodies, Iga, Igg and Igm positives, hi antithyroid antibodies and a positive ana, my OB and NP put it together and said.....you might have lupus. I am in bed before 6pm and get out at 6am. And couldn't sleep without Ambien. I will never, ever, get used to the overwhelming malaise and exhaustion that I live with, and the brain fog was the most scary. I felt like I was losing my mind, and learned early on that I had to rest more or the forgetfulness, confusion and chronic panicky anxiety become unlivable with. I learned that if I spend the energy to do THIS, I can't do this. The Spoon Theory became a tool to help me teach what lupus does. My daughters were teenaged and less than kind when I was diagnosed. <butyoudon'tlooksick.com> helped say it all. Good luck with your data collection, research about lupus is key to a cure.

hugs,

suetoo

 


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/17/2009 8:48 AM (GMT -7)   
I am unable to work anymore. I was also a nurse and started having major organ involvment, requiring frequent hospitalizations. Nursing is a very physically, emotionally, mentally, spiritually demanding job. I miss it, but realistically know that I can't do it any more. Judy

honey007
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 4/18/2009 5:05 AM (GMT -7)   
Thank you all for your response. I am so glad you took the time to share. I am still working full time but am afraid that very soon I will either have to give it up or be made to give it up. I am on 7 meds and am only just coping. I use to be a full time class teacher but exhaustion and lack of recall made me give this up and although I am still in education with some teaching load all the work does get too much. My children are per-teen and they understand I am sick but don't cope with me sleep afternoons and late into the morning. I am lucky my husband is supportive.

I guess the hard bit for all involved, even my parents, is that I look normal and sometimes I can do almost normal stuff like scrub the kitchen floor and than other days can't do a thing.

I feel my mental fog has increased somewhat overtime and I wanted to gauge how bad it would get. I hope the survey will provide some insight

honey007
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 4/18/2009 5:24 AM (GMT -7)   
Dear Suetoo

Thank you for the spoon theory -it makes so much sense.

Cheers
Honey

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/18/2009 7:50 AM (GMT -7)   
Dear Honey,

I'm fortunate to be retired, but I own and manage some rental property, which is very part time. I experience a great amount of lethargy and loss of cognitive function, which makes it harder for me to manage my properties. My CPA handles my books, and I have a great crew, but even then I have difficulties keeping up with my bills and other aspects of property management. I suspect that the meds I take may have something to do with the brain fog. I also have small vessel disease which also contributes to it. It's hard to identify one sole cause of my brain fog, but I know that before I was diagnosed with lupus I didn't have it.

Much of the work I used to do myself to manage a home I now have to hire out. It makes me sad but I accept it.

I have so much admiration for those of you who hold full time jobs and raise children. Many of you have more advanced cases of lupus than I and I honestly don't know how you do it. I hope you are proud of yourselves.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/18/2009 10:47 AM (GMT -7)   
Hi Honey, I work 32 hours a week right now and have since March 07, at first I was upset about the cut in hours but now I don't know if I could work a full 40 hours a week. I work as a sales assistant for one of the largest Investment Firms in the US, thankfully our office is small and close to home. I love my job but can feel my body is failing me. Of course I have my good days and bad but here lately it seems I have more bad. I have a supportive hubby and family but feel like I can't talk to them about how I really feel.

I am on several powerful meds as you can see in my signature and now take pain meds more than I have in the past. The brain fog has progressed over the years but remains mild compared to others.

I hope this helps you.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


honey007
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 4/18/2009 5:57 PM (GMT -7)   
I am so glad have found this forum and all you brave people. Thanks for sharing.

Pat we are all different with different resilience levels. I have been through a dark patch just after my diagnosis in 2002 because I refused to let lupus take over my life. Now I let it be and live within its means. For me that means providing financial sercurity for my family and thus working - but trust me I can't do any more than that. My 12 year old cooks dineer because she does not like her fathers cooking and i have no energy to cook most evenings. On good weekends we go out and make the most of it: on bad weekends - I sleep.

Regards

Honey

Problem shared is surely a problem halfed

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 4/18/2009 5:57 PM (GMT -7)   
That continues to be one of my biggest problems. I had hoped that Imuran would help, but I had such a severe reaction to the drug that I won't ever find out if it would have helped.
Rheumy wanted to try Cellcept, but even with insurance, it would have cost over $275.00/month. Can't swing that.
So, for now, I deal with the cognitive problems as best as I can. I am very lucky to have an extremely supportive family.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


sunnylove
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/18/2009 8:18 PM (GMT -7)   
hi, i'm 40 years old and was just diagnosed with SLE. I'm glad there are other people to talk to about my illness. I'm also happy that i know what it is i have, i have suffered and seen so many doctors through the years. Can anybody tell me exactly how the plaquenil works. I have already seen the eye dr to start base line. Is there anything else i should do, and can anybody recommend a book to learn more about SLE.

honey007
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 4/19/2009 12:27 AM (GMT -7)   
Hi Sunny
I too suffered for a number of years before diagnosis. One doctor even went to the extent of telling me it was in my mind. I was blessed to have changed town and thus doctor who on the first visit identified what I might have and referred me to a specialist. I was reluctant to take medication at first but over time have learnt to accept it and also accept the increased dosage over time. As explained to me plaquenil works on your immune system but takes time to work.

Over the last few years I have tried to join network groups but as they are out of town and require long distance travel I had to give up. Just a couple of days ago I came across this forum and read the posts. I have not read any books on SLE but have read almost all internet articles on line.

Honey

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/19/2009 1:28 PM (GMT -7)   
Hi Sunny, welcome!

According to The Lupus Book by Daniel Wallace, anti-malarials (Plaquenil) does several things. They block UV light from damaging skin, have an anti-inflammatory effect like NSAIDS for joint pain, lower cholesterol levels, inhibit clotting, block cytokines which promote inflammation, and MOST importantly alter the acid-base balance of the cells. This limits the cells ability to process antigens and in that process limits the production of unnecessary anti-bodies. The reduction of unnecessary anti-bodies will slow down the progression of lupus. Plaquenil does not lower blood counts or make you more susceptible to infection. It is mild by nature and has the fewest side-effects of all the meds prescribed for the treatment of lupus.

I hope this answers your questions.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


LadyTsuguri
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 4/22/2009 8:33 AM (GMT -7)   
Hey you guys, it's good to hear I'm not the only one suffering so much. I'm only 17 atm, and I'm scared of what it'll be like when I have a real job and am forced to support myself, it's hard enough liviing day to day as it is!
 
I have a question, have any of you told your employers you have lupus? And if you did how did they react?

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/22/2009 7:01 PM (GMT -7)   
Hi Lady, yes I told my boss about having lupus but I think if I had to do it again I wouldn't. Don't get me wrong she is a great boss and very understanding but for some reason she thinks I am always on the phone with my "doctor's", not sure where that's coming from but anyway. I guess it depends on your boss and what kind of attitude they have.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 4/22/2009 9:42 PM (GMT -7)   
I also told my boss all though I was in remisssion at the time I started.They were pertty good with me but, they really didn't know anything about lupus. Being I knew I had lupus I pick up short and long term disabilty and they excepted me. Well I gotten really sick and couldn't keep up with everything I kept getting sick so the Doc. put me out of work.I'M 53 now and on ssd now. I guess that would be something you will have to decide and how well you know your company and boss. Take care
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


honey007
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 4/22/2009 11:31 PM (GMT -7)   
Debbie Thanks for your feed back

I have told my boss about lupus and also have registered my meds at work for health and safety purposes. SO far he has treated me normal but I feel that there is no true understanding of the disabilties on his part. You give me hope.

Thanks

Honey

LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 4/23/2009 5:53 AM (GMT -7)   
Hi Everyone, I too have told my boss and I am on FML. This legally allows me to work a limited number of hours if I need to, without risk of losing my job. This is great however, rolleyes I sense that it irritates my super, who has to work around my time off. I am about to sell my home and move in with my daughter and her family, so I may search for another job that is less demanding. I'll take less pay for less aggrivation anyday smilewinkgrin ! Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

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