How nice for her, I'm jealous

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Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 4/12/2010 10:14 AM (GMT -7)   
I am generally very sympathetic to other lupus/MCTD patients.  Some people are disabled and absolutely cannot work.  Some of us, like me, have to get up every morning and go to work.  Some of us really cling to that and hope to earn a paycheck for as long as possible.  I fall into the category of "I would not work if I didn't have to."  I am miserable almost every day, dragging into work stiff with joint pain, overwhelmed with fatigue, struggling with anemia.  Sometimes my vertigo/nausea is so bad I leave work, but it's hard for my principal to get a substitute teacher to come in.  So many days I go to work when my body really, really would rather rest.  Sometimes I stay at work, doubled over in pain sometimes, just trying not to upset the students hoping I can just make it to 3:00.
 
Then I stumble across a lupus blog.  I won't mention the name because I'm actually kind of embarrassed I feel this way.  This lady has lupus and posts on her blog about things like how she "had to increase her daily nap from 1 1/2 hours a day to 2 hours a day."  She was so glad her babysitter could extend her time so she could get a longer nap.  Then today I read her complaining about how awful her week was because the babysitter had to take the week off.  She was overwhelmed with how little rest she got because she missed the 4-hour break that the sitter gave her each day.  Poor thing.  She doesn't have to work because her husband makes a fabulous salary so she can stay home, have a sitter care for her toddler while she takes naps and chooses how she spends her time.  She complains about not feeling as "healthy" when she has no sitter.  Yet she managed to make it through a long family vacation in France recently.
 
Yes, I'm just jealous because I don't get a nap every day and nobody comes to my home to help me with cleaning, cooking, and caring for children.  My husband would love nothing more than to let me stay home and be "healthier."  He doesn't make that kind of money.  He's scared to death I will have to quit work because of my disease and of how hard it is to get approved for disability benefits.  All he can do right now is help me at home as much as possible and pray that I make it through each day.
 
I feel really bad today so it just rubbed me the wrong way.  I'll just not click on her blog any more and try to be happy for her. 
 
 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 4/12/2010 10:43 AM (GMT -7)   
The grass always looks greener on the other side!!

Jealousy is pretty normal with this disease. I think not reading that site is probably a good idea for you. There are websites I don't read, magazines I don't get (such as Runner's World), etc -- I try to stick to the encouraging stuff, not stuff that wears me down or reminds me of who I used to be.

It sometimes takes a while to figure out what brings you down, so congratulations on finding and eliminating a source of stress!

I hope your day gets better from here out,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/12/2010 2:16 PM (GMT -7)   
Lynnwood couldnt have said it better!! I agree 100%. I have had these same feelings and have learned not to visit their personal pages or blogs. It is really upsetting. Hope you can catch a break soon!!!

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 4/12/2010 6:03 PM (GMT -7)   
I'm so sorry you are feeling the way you are! I don't have lupus, but I do have RA as well as gastroparesis where I no longer am able to eat solid foods, and now my diet mainly consists of pureed foods and baby foods of all things! I sometimes feel jealous and resentful of others around me eating normal foods, and of my husband who often runs on the treadmil and complains of how long he has to runrolleyes I often find myself thinking he should be happy that he can run at all! There was a time when I could run on the treamil but not now..what you are experiencing is normal, and I'm sorry that you have to work when you are so sicksad Sometimes it just doesn't seem fair.  I do agree with the others that reading this lady's blog is not the best idea for you because it makes you feel worse.

lilgumdrop
New Member


Date Joined Apr 2010
Total Posts : 1
   Posted 4/12/2010 8:05 PM (GMT -7)   
Heartsong-

I feel the same way when you say you would rather stay home than work. I am not in the working world yet, but I do go to college. It is my last semester to get my bachelors and i am either going to go to graduate school or make my way into the working world. however, i dont know how i am going to do it because i am super tired all the time and can hardly function. i have eight doctors and am having to go to appointments all the time. i dont see any job letting me go to appts all the time. im super scared for my future and cannot live off my parents for the rest of my life and surely will not get anything with disability.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 4/13/2010 3:44 AM (GMT -7)   
(((Heartsong))) I really do understand how you feel. I was diagnosed with SLE in 05. I had traveled the country for work and then used every work option available including working from home (I wish you had that option). I still ran myself into the ground, became seriously ill and could hardly walk even with a walker. I quit work and applied for disability 08. There simply comes a time when work is not an option.
 
One thing that helped me for a while: I brought an alarm clock to work and during lunch I would either sleep on my little camp mat with a blanket in the room with my co-workers, or sleep in my car.
I have one more thought, have you considered explaining your situation to the school board and request a desk job?
Don't feel badly that you're jealous. We all are. Love, Butterflake
 
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


mrskled
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/12/2010 10:26 PM (GMT -7)   
I'm so sorry for all you are going through. I feel the same way at times. My husband does make enough money that I could quit work if we made some life style changes, but he recently told me that if I quit my job, I would not be welcome in the home that I help him pay for and that he would seek a divorce. His reason was that he doesn't want to make life style changes, he wants to spend money on foolish things. So I go to work, as a nurse in a hospital trying to keep my home for the sake of my children. Please try to feel good about the fact that your husband does support you and wishes that he was able to let you stay home. not all of us have that kind of love and support. I will pray for you!

Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 5/13/2010 6:33 AM (GMT -7)   
I'm so sorry, mrskled.  I hope you have other people in your life who give you the support you need.  Of course, here on the forum, your fellow lupies are very generous with their encouragement.  Although I know it helps to have a good friend or relative IRL who helps you. 

 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/13/2010 8:18 AM (GMT -7)   
DearHeart, Sometimes it's all a matter of perspective. I could say that I'm lucky that I'm at home, but mostly because even if I did work it wouldn't be enough to cover the gas and cost of sending my 2 1/2 year old to daycare. He's utterly exhausting even for a healthy person and especially sine I can't really spemd much time outside with him. I've spent the last four years feeling like a zombie most days nd now after almost 3 month of methotrezate, I'm finally starting to get some energy back. I'm still having pain issues that require more pain meds then any employerer would ever hire me on, so I've got to just try to make the best of things. Keep searching for the right meds to make you feel better and keep looking for the assistance you need. My husband is a house painter and we live in a rather rural area hit very hard by the crumbling economy, if it wasn't for medicaid we'd be in very bad shape. I'm waiting for my third appeal for SSI now into year 3 of this process. If you think you will need disability, get a lawyer and get it going because it really takes a long time. Take care and od Bless.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg, super B complex, multi- vitamin, folic acid, 15mg er morphine twice a day and Lortab 10 3-4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7.  Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 5/19/2010 12:36 PM (GMT -7)   
Why zap your energy being envious? !

I was bed ridden and live alone. I had to work or not eat or pay rent. I had no/little help and had no choice.
Once I got on sick leave, I got worse cause I had more time to sit around and feel sorry for myself.
I started to take courses towards my naturopathic cert. then was forced back to work full time.
I now work full time and take courses. It's tough, I have days where I struggle, and it would be nice to have the luxery of doing "nothing"
But doing nothing kills the spirit.

Be the change you want to see. Be grateful for what you have.
A positive attitude can change your illness, it did mine.

Good luck

phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 6/13/2010 5:24 PM (GMT -7)   
I hope everyone is doing well....at least well for where you are in your journey. I too, had to work through my flare ups. I was in a flare up for years and never thought I could not go on anymore. They were bad at times, I just come home in sat in the tub and pass out in bad. Don't lose sight that you are doing the best you can.
 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


LupieCyn
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/13/2010 9:38 PM (GMT -7)   
I actually came in here to just feel like I belong. I was struck by the post because I stay home. I was forced to quit my job a few years ago after I was unable to get out of bed.

Since then, I have fought for my disabilty and finally won after 3 years.

I was lucky enough to have parents that were able to help my financially while I filed.

While I understand your jealousy, I am jealous of people who are able to maintain some sort of normalcy no matter how strained.

I would give anything to be able to work because I am constantly looking for my place in life.

I have actually been told (since I don't work) "Wow, it must be nice to be you" It isn't.

I went from making over 30,000 to about 13,000 on SSDI. I miss the money. More importantly, I miss the pride that comes with being able to be self-sufficient.

I guess it boils down to the fact that everyone has different situations. We are all just doing the best that we can. :)

phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 6/16/2010 4:37 AM (GMT -7)   
Welcome Lupiecyn....I am glad you found us.
 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/16/2010 7:59 AM (GMT -7)   
LucieCyn,

Welcome to the forum. So that others can meet you, why don't you start your own post on the main page and tell us more about yourself. Sounds like you really found the right place, because everyone here "belongs" and I think you'll get the support that you need.

I'm curious....what do you do during the day? Sometimes picking up a hobby can help. I don't work either, and I learned to knit and have made lots and lots of new friends who knit at a yarn store. It give me a creative outlet that I love, doesn't take much energy, and the store is just across the street from my physical therapist. So on my better days I get out and knit with friends. Some days I just stay in bed, and other days I knit at home. I'm not suggesting that you take up knitting specifically, but finding something that you enjoy can help fill up your life.

Glad you're here and hope to see more of you.

(((Hugs)))

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

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

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