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jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/4/2008 4:02 PM (GMT -7)   
it was time to quit your job?

Did you experience fatigue so badly that you just couldn't do it anymore or other symptoms that interfered with your daily life (i.e brain fog, etc)?
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/4/2008 4:11 PM (GMT -7)   
Stacie, I had been thinking about quitting my job for over a year before I actually did it. I found that I spent all my time at home, resting so that I could have at least a little energy for work. I just had no energy left for my kids or husband. Before I quit, I tried cutting my hours, but I was still exhausted and just didn't have a very good quality of life. One day it just kind of hit me, and I knew it was time to quit. Part of my job was being on call so many days a month and one day that I felt really sick, I got called in to work and that was the defining moment for me - I just knew I couldn't do it anymore. I typed up my resignation letter that weekend. It was still a hard decision for me, but it has turned out to be the best decision I could have made. My quality of life is so much better and I feel like I have more to offer my family. It's a really tough decision at the time though.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/4/2008 4:56 PM (GMT -7)   
Oh Stacie,
 
This is such an important topic. I hope everyone reads it.
 
I'm dealing with this right now.  I knew I had to make a major shift when my flare ups kept happening over and over again, and when the joint pain and arthritis became too much. Oh and the fatigue.  It's horrible.  This has all hit the fan in the last 4 months for me.  I've had 4 flare ups since the end of April, which is very unlike me.  And the pain I'm having is completely hampering my ability to do my job, which is a high energy wedding and portrait photographer.  My business is getting downsized 75%. I can't keep up with it anymore. My body is done.
 
I made the decision to change things for next season because I'm watching my body completely rebel against my schedule. I need to still be here for my family, husband, my little nephew. If I keep up this pace, I won't be here very long.  That's how I see it. I have to be realistic and not naive about what lupus can do to me.  It can kill me. I don't have a choice.  The job has to change.
 
It's a very stressful decision to make. I can understand that entirely. What are you feeling right now?  Are you feeling like this is something you need to do asap?  Can you go part time, give that a shot and go from there?
 
We need to live for the present, and plan for the future. I try to live by that mantra. I've had a hard time in the past, doing that.  But now, I can't wait for it to happen. 
 
(((hugs)))
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/4/2008 6:41 PM (GMT -7)   
Thank you Hippi and Ginny for sharing, this is such a tough thing to deal with and a decision I didn't think I would be faced with any time soon. I love my job but there are parts of it that is getting a little stressful, I am not sure if that is what's draining me or not.

The past couple of months have been terrible for me, I've had a ton of GI problems, joint pain in places I didn't know existed and extreme fatigue. I work 32 hours a week and get one day off during the week, which has been working well for me but lately I've been exhausted. I was on vacation last week and slept at least 11 hours each day and would lay down and rest for an hour or so each day. It's not been that bad since before I was dx.

Hippi, I have been at the point you were with resting so much to gain strength for the coming work week. It's not been that bad until here recently and I am not sure what has changed. The family members that were living with us moved in June so that has taken a lot off me but it seems I got worse after they moved. Maybe all the stress that was built up released itself all at once.

Ginny, I am a lot like you I've had several flares since the spring and just not sure as to what to do from here. I know there is not much out there to help with fatigue and I can't quit right away or at least I'm not "planning" to. I carry the health insurance for my family and I can't / don't want to be without it. I don't think my boss would mind if I asked to have my hours cut but it would sure hurt my wallet but....... it may be something I have to do.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/4/2008 8:15 PM (GMT -7)   
Hi Stacie,
 
You know, that's how I feel too.  Everything goes great for months and then whamo, the busy schedule, stresses, etc, build up to the point that they overflow.  You have a tremendous amount of pressure on you to hold the health insurance.  That in itself would give you enough worry and stress to make you sick.  You can't be without that insurance.  The blow to the the wallet I understand.  It's going to happen with me too.  We just bought a house in May where the mortgage is $700 more a month than our previous house.  It's going to be really tight for us too. 
 
I guess you just have to weigh the pros and cons.  The pros being that you will probably be healthier and happier and more available to your family. The cons are the financial pressures.  It sure wouldn't hurt to ask your boss about cutting your hours. 
 
This is a hard lifestyle change to make isn't it.  I'll be praying for you Stacie,
 
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 8/5/2008 4:52 AM (GMT -7)   
Hi Stacie. I live with my BF and pay the mortgage on my townhouse in which my daughter lives. Last summer I had extreme fatigue and pain so my boss let me work from home 4 days per week. In May 2008 I started becoming very sick and could not go into work. By the end of May I was too sick to work from home and in June I used all my sick leave. My BF insisted we needed my income. By late June I was using a walker and became too sick to bathe, dress or get any food. My daughter had to take leave from cullinary school to assist me and take me to medical appointments.  In the past when I ran out of sick leave I used leave without pay, but this time I told my BF I had to quit and if he didn't agree I would move in with my daughter. He agreed that I needed to quit working. It took weeks for the doctors to diagnose me (I had infected parotid glands) and it took weeks to recover. I should have resigned sooner! Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien.  multi vit, C, flaxseed oil, acupuncture
Donna
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/5/2008 1:59 PM (GMT -7)   
I too should have resigned sooner. It is just so scarey and heartbreaking. As a school nurse, I was constantly catching infections that were reeking havok! The fatigue became a major factor and cerebritis! It is a hard decision and a scarey one. You will be in my prayers. God Bless YOU, Judy

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/5/2008 5:57 PM (GMT -7)   
Thank you Ginny, Donna and Judy - this is such a hard decision, you are right Judy it is scary and heartbreaking. I guess for now I will take it day by day and pray I have more good days than bad. I will continue to make notes each day of how I am feeling and take it with me to my next rheumy appt. Maybe she can shed some light on this too.

Ginny, the decision for me to carry health insurance for my family was a hard one and this is the only time I have ever done it. When I got this new job in a little office with a huge corporation it was so cheap I couldn't pass it up. Now that I have been dx with lupus it probably would cause my hubby's small group plan to go through the roof, we were already paying $800 a month 3 years ago I couldn't imagine what it would be now.

Thank you for your thoughts and prayers... I need them, I just don't feel right.... physically and emotionally. I feel overwhelmed and I'm really not sure why.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 8/6/2008 7:57 AM (GMT -7)   
(((((Stacie))))), you are in even a tougher situation since you carry the insurance for the family. I am so thankful that my husband's workplace has a really good plan. Wow, I can't believe how much the insurance is if your husband carries it and it really stinks that a lot of small businesses seem to get burdened with things like that.

I think the decision to quit a job is one of the toughest ones to make - I tortured myself for a long time about it and it was heartbreaking to turn in my resignation. I cried and my boss cried and I had lots of tears on my last day, but like I said, I had just hit my breaking point.

My thoughts will be with you through all of this. I think it's a good idea to track things and take it to your rheumy. Hang in there and know we are here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 8/6/2008 9:25 AM (GMT -7)   
Stacie,
 
I totally understand what you are going through.  Last year I took a 3 month leave from work due to a terrible flare.  That time gave me a chance to think through the decision to work or not.  My father passed away at the end of this 3 month leave.  To keep my mind off Lupus & my Dad, I decided to go back to work, but with a different employer.  I've had more luck with small companies - less germs floating around the office & more understanding folks.  So I would encourage you to find a similar work/life balance.  I really do enjoy being around other people rather than at home all alone.
 
Hope this helps.

~Jenny~

I have Lupus ... Lupus doesn't have me. 

Dx: Raynaud's(2000)·Lupus(2001)

Rx: Pletal 100mg·Norvasc 10mg·Prednisone 5mg·Plaquenil 400mg

  


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/6/2008 6:33 PM (GMT -7)   
Thank you Hippi & Jenny,

I knew taking the responsibility of health insurance was a tough load to carry but I felt it would be ok. My office is a small setting (but with a big Corp) with wonderful understanding people, I love it but with every job there comes some sort of stress, it's not that bad I just can't figure out why I can't seem to have more good days than bad.

Thank you all for your advise and support, it really means a lot to me. ((( hugs )))
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/6/2008 6:59 PM (GMT -7)   
Do you feel like you just want to throw your hands in the air and say, "UNCLE!!!" LOL.  Honestly, I find myself shaking my head at my own work situation wayyyy too often.  It's so stressful.  Have you had a good talk with your husband and family about all this?  Maybe brainstormed about ideas?  I'll keep praying for you too Stacie.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/8/2008 8:25 PM (GMT -7)   
Stacie--
I quit the first time being told I had a year to live. I had just finished grad school and was having trouble getting a good job, so I was doing freelance work. I went bonkers and got very ill on interferon so it was a good thing. But even before the interferon, I felt my illness welling up in me like a wave about to break and I just felt it was too much to handle, especially if anything else went wrong, which it ended up happening. But I did re-educate myself while ill, playing on the computer and got a second wind after interferon therapy. I buckled down, believed that my illness was behind me and took antidepressants and antianxiety drugs which made me "tougher" and took other meds for pain, IBS and such. Working on the computer, first doing instruction manuals and then programming minimized my interaction with a lot of people. Also, programmers are notoriously eccentric and generally were able to have a lot of flex time and I had very "cool" bosses, so I was able to keep working and even get raises and promotions despite periods of illness. Finally, after accumulating a bunch of new medical problems and finding that my liver could no longer tolerate meds and mentally, even on the meds, I was pretty much ready for a breakdown, I took a leave. I got meningitis and just finally said "no more, I just can't do it". Work had become fatiguing and painful.

The reeducation I did on my own at home I was really proud of. It enabled me to up my income before applying again for disability and gave me some feeling of usefulness. But it only worked when I had long periods of remission. I was sick with something major about four times a year. Any more than that and my boss would've start questioning whether I could handle working there.

I pretty much worked the second time until I had a nervous breakdown and I strongly recommend against that. I think just taking antideppressants and antianxiety and pain meds and such and pushing myself was very detrimental in that I didn't get any health problems solved or investigated during that time and ran myself into exhaustion. But sometimes you have to--I was a single mom and had not paid in to disability.

Fiddling around at home, maybe writing or something can definitely fill the void and uselessness feeling. I don't know if this helps, but I just know what I did and what not to do. I really suffered from that nervous breakdown and wearing myself out. Actually, that's how I got really sick in the first place when they gave me a year to live.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/9/2008 8:13 AM (GMT -7)   
Ginny, oh yea I feel like throwing my hands in the air and giving up, lupus doesn't make sense to me. I've had such weird things happen to me this year that I would never attribute to lupus. I haven't talked to my hubby about it yet but I will. Thank you for your prayers!

Marji, thank you for sharing, it does help! Bless your heart you have been through so much, it is sure to help those of us out there still working and wondering how much longer we will be able to do it. We definitely don't need to push ourselves to the end but like you sometimes that's our only option. I really want to work as long as I can without causing damage to myself, thankfully I have a desk job and work with good people. For now I will just take it day by day.

Thank you all for sharing with me and supporting me.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/12/2008 11:57 AM (GMT -7)   

Hi Stacie,I'm sorry you have to deal with this stuff. Wouldn't it be great to be independently wealthy confused actually my story is the exact opposite but it might help a little. I was living off of a pension from the V.A. Needless to say it wasn't a lot. I wanted to get a job. So I contemplated it. The truth was that if I applied for a job the honest truth would be that I would never know until I woke up in the morning if I was going to feel up to getting out of bed let alone going to work. I thought what kind of employer would hire somone who couldn't say if they would be to sick on a day to day basis. Plus I would be so worried every day that I wouldn't be up to the task that the stress would be terrible. So I still hope that some day I can get a job. If I go into remission or they find a cure or somthing. Never is a long time. So just for now I'm staying put. Fortunately I am on SSD now and that has releived a lot of the financial problems. I'm staying at my bros to get rid of some bills that are bogging me down but next month I make a final payment on one and then I have more to chip away on the others. I am hoping within 6 months I'll be on my way to being ou of debt. This living situation isn't the greatest but it isn't the worst either. I guess I only tell you that  because I want you to realize that yes it is a big step but if you can get SSD you can get on medicaid of course it doesn't cover all the family but your kids will also get a check from disability that would cover insurance. There is always a way.

Be good to yourself

love ya

carol


God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 8/14/2008 12:58 PM (GMT -7)   
I worked for two years in pain... My job included standing on my feet for 8 or 9 hours...
It was killing me... I had to have surgery... was going to have to find a replacement to run my shop for6 weeks... I just decided, go home....and it will be three years for me not working at the end of this month...
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