Scared tonight

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nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 8:10 PM (GMT -7)   
crstr said...
i don't know how anyone works a job with this horrible disease........i've been dealing with it for 8-1/2yrs & there is no way i could work a job.........i would get fired after they realized i couldn't b counted on.........there r some days when getting out of bed is more than i can do.........


The above quote was lifted from a post on Dinosaur's "Feeling pretty bummed" thread. The whole job problem is weighing incredibly heavily on me right now. And crstr described what's been happening with me just perfectly....I didn't want to hijack Dinosaur's thread, so I started this one.

My medical situation has been complicated by the fact that I've been diagnosed with Lyme disease besides the autoimmune stuff. At first I thought, "Cool, I'll take antibiotics then I'll be cured!" Apparently it's not that simple....if anything, my symptoms are getting worse. I'm sicker on the antibiotics than I was before. It may be temporary, or it may not.

I've been trying to continue with TWO jobs (anybody out there think that I've lost my mind??), but am beginning to think I will ultimately have to let go of both. Very soon.

I will let go of the part-time job first. My employer at my full-time job has been great and I can work from home most of the time. When I'm home I can rest when I need to rest and work when I feel OK, even if I end up working on the weekend or at 8 or 9 at night.

I've been working on stuff for both my jobs most of the day today (Sunday). What scares me is I think I will lose my day job eventually, even if I don't voluntarily quit....recently I had to give one of my assigned tasks to someone else, which I have never done before. It feels like the beginning of the end.

My double vision and vertigo are OUT OF CONTROL. I hurt all over, especially rib cage/upper back. It hurts when I take a deep breath or change position. My fatigue is constant and debilitating. I have to force myself to get up and get dressed most days.

And I don't know how long they will continue to let me work from home. I know that there are layoffs coming at work, in the next several months, and I just can't see them keeping me and letting go of someone who is in the office every day! I wouldn't keep me!!

The financial stuff scares me A LOT. I don't think we'll be able to make the mortgage payment on SSDI. I'm the only employed person in the house....hubby is full-time stay-at-home Dad for our adopted kids (biological grandkids, one is special needs).

Am I just scared of change? I've been unemployed before.....somehow I've always made it. Even if we had to move to a cheaper place, make lifestyle changes, what matters is staying together as a family.

Is it just that I've never had so much to lose before....?
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 1/31/2010 8:27 PM (GMT -7)   
For some of us, myself included, loosing a job means loosing a HUGE part of our identity. I think that was the hardest part, and even 8 years later I am not sure who I am without the career & the work I loved.

Financial instability was also a huge fear, as for me there is no support except for myself. Thankfully I had purchased private Long-Term Disability years ago, or I would have had to sell my home and then....not sure what would come next.

Fear of change? Well, it's a pretty huge change just to come to the point of asking these questions! I don't think that was much of a consideration for me. Something had to happen, and either I had to instigate some change or wait until the whole huge mess fell down around me. For me, a little bit of control about what happened when was important.

I would suggest cutting back as much as possible with spending and living expenses. Sometimes letting go of stress-inducing issues helps my mind function a bit better so that I can produce more acceptable work product. Then cutting back on the second job so that you can get more rest into the picture. Making those 2 moves may relief some stress enough to let your body find it's way; maybe letting you continue your "real job" longer and more efficiently.

I also had to let go of my traditional over-achievement work role and just act like a normal person rather than trying to continue -- that gave me some relief as well.

Could your husband contribute financially in some way if absolutely necessary?
Could you use FLMA to take a short-term leave while seeing if the Lyme antibiotics work?

There is a lot of soul-searching and rearrangement of priorities that most of us have had to do when considering the possibility of having to quit working. Lots of us here have the experience of thinking it through and discussing it here and finally deciding what comes next.

We'll be here while you work it through, supporting you in decide is best for you, and sharing what has worked for us.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Dinosaur
Regular Member


Date Joined Jan 2010
Total Posts : 25
   Posted 1/31/2010 8:28 PM (GMT -7)   
Wow, I definitely know what you're going through. I've had a lot of the same fears with my job lately.

nasalady said...
I hurt all over, especially rib cage/upper back. It hurts when I take a deep b
reath or change position. My fatigue is constant and debilitating. I have to force myself to get up and get dressed most days.

I have the exact same problems right now... especially the right side of my rib cage. It hurts to move, or when pressure is applied to that area, weird. Any idea what could be causing this? As for the fatigue, I still don't know what to do about that. shakehead

I really feel for you, and hope you can work things out.
22/F/FL


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 10:09 PM (GMT -7)   
Thank you so much Lynnwood, for your wise and comforting words.

Yes, I will be losing a big chunk of my identity; maybe that's part of why I keep hanging on. I too am the typical type-A overachiever....and I love my job!

But I think I've reached the point where something's got to give....I don't want to wait until the "crash" occurs, I would much rather have something to say about what happens when. I think I've held on past the point where many others would have said, "Enough already!".

So I need to do something soon....I can look into short term disability. I purchased long term disabiility insurance through work, but I think I have to be unemployed for 6 months first?

I appreciate you and the rest of my HealingWell family for being here for me; so many of you have already been through this process.

Thanks again and God bless....
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 10:18 PM (GMT -7)   
Dinosaur said...
Wow, I definitely know what you're going through. I've had a lot of the same fears with my job lately.

nasalady said...
I hurt all over, especially rib cage/upper back. It hurts when I take a deep b
reath or change position. My fatigue is constant and debilitating. I have to force myself to get up and get dressed most days.

I have the exact same problems right now... especially the right side of my rib cage. It hurts to move, or when pressure is applied to that area, weird. Any idea what could be causing this? As for the fatigue, I still don't know what to do about that. shakehead

I really feel for you, and hope you can work things out.


Thanks Dino,

So sorry to hear about your job woes, and also that you're having the same type of pain. It's one of the most difficult kinds of pain for me to deal with because, since it hurts to breathe, you are basically hurting all the time! :(

With lupus one fairly common problem is pleurisy, which can cause pain in the rib cage and chest. Pleurisy can be caused by several things, including pneumonia. You should probably be seen by your doctor as ssoon as possible.

I email my rheumy to ask about pleurisy adn he just emailed back, "Pleurisy is defined by chest x-ray or by hearing a rub". Which was not helpful....unless maybe he was telling me to go see my PCP? I don't know.

If you find out how to get rid of the fatigue, please let me know! tongue

I hope you DON'T have pleurisy and that you feel better very soon!
(((hugs)))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 2/1/2010 2:05 PM (GMT -7)   
JoAnn,

I'm sure I can't imagine how scared you must feel about your financial situation. Lynnwood's post was thoughtful and I imagine helpful as well. I too miss the part of me that I lost when I retired. After 10 years, though, I have learned to have a new softer identity and except for my real bad days, refuse to stop working on the self-esteem issues that come with a chronic illness.

The economy is tough and my husband's business has suffered. Our overhead is high and I continue to tell him that we can downsize - sell our home and buy a smaller one but he's the eternal optimist and not ready for that. But it has been hard, and I feel guilty about not working.

No matter what happens, I believe you'll find a way. And Lynnwood's comment about not waiting till the huge mess fell around her was thought provoking. By talking about these issues now, you're showing the same forethought. Kudos to you for having bought long-term care insurance.

Hope you start to feel better physically and that the other pressures don't wear you down.

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

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/1/2010 3:55 PM (GMT -7)   
PattyLatty said...

I'm sure I can't imagine how scared you must feel about your financial situation. Lynnwood's post was thoughtful and I imagine helpful as well. I too miss the part of me that I lost when I retired. After 10 years, though, I have learned to have a new softer identity and except for my real bad days, refuse to stop working on the self-esteem issues that come with a chronic illness.

The economy is tough and my husband's business has suffered. Our overhead is high and I continue to tell him that we can downsize - sell our home and buy a smaller one but he's the eternal optimist and not ready for that. But it has been hard, and I feel guilty about not working.

No matter what happens, I believe you'll find a way. And Lynnwood's comment about not waiting till the huge mess fell around her was thought provoking. By talking about these issues now, you're showing the same forethought. Kudos to you for having bought long-term care insurance.


Thank you Pat, it's good to know how other people have dealt with these things. Lynnwood's post was extremely helpful....all of the replies have been helpful, and I don't feel so alone when I go back and re-read them.

It's interesting that you mention self esteem. I have been having a very hard time with the self esteem thing lately....I've gained a lot of weight since starting prednisone, which doesn't help, plus I feel so incredibly useless both at work and at home. At work I seem to be just barely able to do the minimum to keep from getting fired, and at home my husband does everything except cook dinner. I still try to cook dinner....when I can't he gets take out or makes something simple. In addition to all of this I recently had my driver's license taken away from me by the DMV because of vertigo, etc.

I'm always fighting against this feeling that I'm a total loser now.....I hate not being the healthy, active, COMPETENT me!

And I know that all of you can relate to this; thanks for letting me vent a bit!

Pat, you're right. Somehow we'll find a way to survive. Part of my worries has been our adopted babies - two years ago, just before I got sick, we adopted two of my grandchildren. They are now ages 3 and 4. The 3-year-old is disabled (cerebral palsy among other things) and she has LOTS of medical bills too!

But it will all work out somehow. It has to! I do believe in the power of prayer....and I know that others here have gone through the process of applying for SSDI and survived.

JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 2/1/2010 3:58:43 PM (GMT-7)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/2/2010 12:31 AM (GMT -7)   
JoAnn,
Bless your heart! I know this is a trying time that you are forced to face. I was scared to death when I was forced to stop working. I was a single mother of two young teenagers. Fortunately, my long-term disability started paying right away. It was a quiet a bit less than I was making while working, but it paid the bills. We had to make some adjustments, but we managed.

I hope this all works out for you and your family. You will be in my thoughts and prayers. Take care and keep us updated.

Babs

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/2/2010 1:17 PM (GMT -7)   
Thanks for your encouragement Babs! I apprecialte the prayers!
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

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