Losing my job from Neurolyme

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Kct
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Date Joined May 2016
Total Posts : 219
   Posted 4/11/2018 12:33 PM (GMT -6)   
Can't do the detail fast enough to do my job. Really glad I have good STD and LTD.

Very depressing. I have been a Physician Assistant for 35 years. Maybe I can get better after a few months break. See

astroman
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Date Joined Mar 2014
Total Posts : 5083
   Posted 4/11/2018 1:02 PM (GMT -6)   
Many changed jobs to still work vs no money comming in. Good to have back up plans. Did you work in school ect? - could do similar jobs again?

Kct
Regular Member


Date Joined May 2016
Total Posts : 219
   Posted 4/11/2018 1:11 PM (GMT -6)   
No I working in a hospital in surgery( which I am excellent at but I just can't concentrate to do the paperwork. )

Girlie
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Date Joined May 2014
Total Posts : 33848
   Posted 4/11/2018 1:12 PM (GMT -6)   
That's too bad, kct.

I haven't worked for almost 5 years now....and I've stopped planning for it. I used to say maybe in a year, I'll be back...and then it wouldn't happen...and now..I'm just trying not to plan for it...so I don't keep disappointing myself.


I guess both hubby and I won't be retiring until we're 70...I've lost over $300,000 with this disease - wages, appointment costs, supplements, travel to appts.

Could've done a lot with that money...sigh.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Kct
Regular Member


Date Joined May 2016
Total Posts : 219
   Posted 4/11/2018 1:28 PM (GMT -6)   
Wow, were you able to get disability ?

Thank you for sharing, I'm so depressed I can cry, but I have to go assist a plastic surgeon in a few minutes, at least I can still do that well. This will probably be y last week of work. I loved being a PA taking care of people is who I am. Iwas one of the lucky ones who never felt it was work.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33848
   Posted 4/11/2018 1:38 PM (GMT -6)   
Kct said...
Wow, were you able to get disability ?

Thank you for sharing, I'm so depressed I can cry, but I have to go assist a plastic surgeon in a few minutes, at least I can still do that well. This will probably be y last week of work. I loved being a PA taking care of people is who I am. Iwas one of the lucky ones who never felt it was work.


I never tried for disability as Lyme disease won’t be accepted as a reason and I have no other diagnosis from any Dr.
Been to endocrinologists x2, Neurologist, neurosurgeon, physiatrist, ENT Dr,

Oh - I did have a frozen shoulder diagnosis but not sure if that would be enough.

Are you leaving on your own accord?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 385
   Posted 4/11/2018 1:48 PM (GMT -6)   
I'm thinking of trying to sell stuff on ebay to make some money. It sounds really confusing to figure out how to do it though.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33848
   Posted 4/11/2018 1:54 PM (GMT -6)   
Notime4lyme said...
I'm thinking of trying to sell stuff on ebay to make some money. It sounds really confusing to figure out how to do it though.


You mean sell your own stuff?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 385
   Posted 4/11/2018 2:07 PM (GMT -6)   
Yes... Or I was hoping to sell things for family members who have things they would like to get rid of. I'm not sure how that's going to work out though.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1997
   Posted 4/11/2018 2:21 PM (GMT -6)   
Notime4lyme said...
Yes... Or I was hoping to sell things for family members who have things they would like to get rid of. I'm not sure how that's going to work out though.


If you learn how, can you teach me? I need to do that, too, but I get totally overwhelmed trying to do anything new.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33848
   Posted 4/11/2018 2:36 PM (GMT -6)   
Weve sold a few things in the past few years - my dads walker and wheelchair after he passed away.

But I think it was on Craig’s list - not ebay
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 385
   Posted 4/11/2018 3:05 PM (GMT -6)   
I'll let you know how it goes... If and when I learn. Right now I seem to be having a lot of herxing from the laser therapy so I won't start yet. The hardest part seems to be deciding what to charge for things, and figuring out your return policy.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 798
   Posted 4/11/2018 5:17 PM (GMT -6)   
I've been on std since November. about to be transitioned over to Ltd. But I have visible swelling on my brainstem which justifies it. Hoping to get that swelling to go away so I can go back to work.

Kct
Regular Member


Date Joined May 2016
Total Posts : 219
   Posted 4/11/2018 6:55 PM (GMT -6)   
I had a Neuropsyche exam showing difficulties with cognition/memory/ executive function issues (but no Dementia yet, Thank God) The PHD was a member of ILADS for years and has been very successful proving her clients have a disabilty from her testing results. My Therapist who is also a ILADS member also knows Attorneys who have gotten Disability for some Lyme patients probably with diagnosis that are significant enough and well documented. I also have Chronic Fatigue, Fibromyalgia, ADD, Depression & Anxiety. Mixed sleep apnea with MSLT.

I'm thinking of doing a U Tube channel as a Patient Advocate.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5083
   Posted 4/11/2018 7:32 PM (GMT -6)   
The old saying, where there's a will there's a way.

If a few months off is not enough, well: I'm convinced everyone has more than one born skill or career path. Often ones born skills (which dont require degrees) can be different than a "degreed" career, but pay more than disability.

Many people started full time or part time business while faced with our reality. Its hard , but can be done.

Many people do not do the same thing forever. I had the nuero lyme psyche test and failed several parts miserably. The LL psyche Dr asked how I worked, as I barely could. I mentioned after being this way for years, I figured out my new set of "dos and donts", changed high tech jobs with less $, but less MICROMANAGERS and less commitments and more flex time, then roughed it though while chugging supplements on breaks.

I was part time for a while. It was that - or become homeless since I have no additional support and make a mortgage payment alone. It sucked, but I survived. Then I started a seasonal side service/repair type company, based on "born with" skills.

This would be perfect for those with spouses. Alone, many have no choice in the matter, if disability wont go through or is not enough to live on.

I'm not a spiritual person, but it seems that lyme can make true survivors out of people here. Life is not easy, but we hope and think it should be.

Post Edited (astroman) : 4/11/2018 6:35:02 PM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1997
   Posted 4/11/2018 8:33 PM (GMT -6)   
astroman said...
The old saying, where there's a will there's a way.

If a few months off is not enough, well: I'm convinced everyone has more than one born skill or career path. Often ones born skills (which dont require degrees) can be different than a "degreed" career, but pay more than disability.

Many people started full time or part time business while faced with our reality. Its hard , but can be done.

Many people do not do the same thing forever. I had the nuero lyme psyche test and failed several parts miserably. The LL psyche Dr asked how I worked, as I barely could. I mentioned after being this way for years, I figured out my new set of "dos and donts", changed high tech jobs with less $, but less MICROMANAGERS and less commitments and more flex time, then roughed it though while chugging supplements on breaks.

I was part time for a while. It was that - or become homeless since I have no additional support and make a mortgage payment alone. It sucked, but I survived. Then I started a seasonal side service/repair type company, based on "born with" skills.

This would be perfect for those with spouses. Alone, many have no choice in the matter, if disability wont go through or is not enough to live on.

I'm not a spiritual person, but it seems that lyme can make true survivors out of people here. Life is not easy, but we hope and think it should be.


Wow, Astroman!! Both a heartbreaking and inspirational post.

NotQuiteAntonio
Veteran Member


Date Joined Jan 2015
Total Posts : 1149
   Posted 4/12/2018 12:41 AM (GMT -6)   
Would it be possible for you to work in an area of medicine that’s less intensive?

I’ve willed myself through LPN school, because I need to in order to support myself and provide a better quality of living. Granted, that’s not near the level of a PA. I’d love to be a NP, but I don’t feel I could juggle all of those pieces, at least not right now. I plan to keep moving with my education, hoping I’ll find the answers to my health picture along the way, but that’s not certain.

Even as an LPN, completing preceptorship, some days are a real struggle. I’d like to work days, so as to maintain a normal schedule, circadian rhythm, and challenge myself in order to grow (more happens during the day), regardless of how Lyme/co limit my ability to do so, but I’m constantly heing reminded of those limitations. I’m probably going to work nights. I don’t want to, but I don’t want to crash and burn, let alone risk someone else’s health. My heart’s telling me to take the hard route, though. Easy sucks, sometimes. The past couple years, not much of the good in my life has come easy. Still, I feel like I don’t work hard enough, because Lyme holds me back inside my head. Physically, too, but it’s the decreased functioning mentally that really keeps me from really pushing my boundaries.

But, yeah, back to my point, if I can make it through an RN program, I’m fairly confident I could find a specialty that is low stress. I was wondering if that’d be possible for you. A niche that’s not quite so demanding. I mean, a PA is meant to oversee care in a really layered way, I guess, so that might not be an option, but... try? Relocate, if you have to. I don’t know.

My health sucks. I have so many things that compound. Treatments contradict each other in some cases. I’m so busy with life outside of being sick that I don’t dedicate enough time to getting better. I’m a mess, in a lot of ways. I am so far from having the answers. I’ve got working ideas in my head, but I’m really just hanging on. I keep picking myself up. I stay dreaming. I don’t know if it’s right. I don’t know what’s gonna happen to me. I could start declining rapidly tomorrow, I guess. I’m just here, one foot in front of the other.

Disability, assistance programs of some type, that might work out for you. If not, I’m sure you’ll find a way. People give up on trying to get better. Most come back. Some can’t afford the best, so they do the best they can. Is it enough to get better? Sometimes, I don’t know. I’m not here as much as I should be. I hope so. But, some are probably more like me, scraping by. Point is, we’re still alive. Life’s still life. I’d rather be here, working with what I’ve got, than dead. Astroman mentioned survivors.

I’m gonna have my little dreams. I’m gonna do my best to keep everything in order, simultaneously falling to pieces, praying I eventually fall into a system that works. Some days, I wonder. Ask my girlfriend how much I beat myself to hell. No compliment is good enough, no accomplishment, nothing good I do, because it’s not enough to live up to standards I’ve got from a time when I wasn’t sick. Is it normal to think about killing yourself on a daily basis? Am I weak? Do I exaggerate? Is it normal to pull a 180 every morning, tell myself to smile, how beautiful life is, how grateful I am to be here, and get out there to be something? Reach into a dark hollow and turn myself inside out, every day. I wish it were constant, but it’s probably the infections. I don’t really want to die. There are sides of me that would have the world believing otherwise.

We’re at two different points in life, I’ve realized. You’re talking about struggling with a profession you’ve been in longer than I’ve been alive. I don’t really know how to give you advice. I’m fighting to get to that point. I’m just trying to make my contribution, see a bit of the world, experience, be a human being. I don’t know what I am, why I’m here, if anything I’ve said means anything to anyone but myself. I don’t know.

I just wake up and do what I feel I need to do in order to keep breathing and moving forward. I **** up a lot, but... I guess that means I’m trying. If I weren’t, every day would be a **** up, and I’d probably not know the difference.

Just ignore me. My intentions are good. My heart goes out to you.

You’re in pain, but you all get to share the experience of another day with me. Keep doing your best.
Do the work, be the prize.

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 156
   Posted 4/12/2018 7:53 AM (GMT -6)   
My most frightening things I'm dealing with. I am my last semester of college. Struggling, and working as well. Fortunately my my job that I have now which is some days tough doesn't require a lot of skill set. But when I graduate the plan was to look for a job to make a little more I believe I was undiagnosed for about two and a half years. + been treating for about four and a half months buhners. I'm pulling on to that hope that any damage isn't permanent and that even though I struggle through life it's only healing my brain. I guess like most of us the hardest part is getting people to understand it's not just Mind Over Matter some days or punching through that brick wall it's literally you can't.

1000Daisies
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Date Joined Apr 2016
Total Posts : 2473
   Posted 4/12/2018 3:35 PM (GMT -6)   
Girlie said...
That's too bad, kct.

I haven't worked for almost 5 years now....and I've stopped planning for it. I used to say maybe in a year, I'll be back...and then it wouldn't happen...and now..I'm just trying not to plan for it...so I don't keep disappointing myself.


^ This is exactly me too! It's been 6 years now. I didn't think it would be this long.
For me, once Kid#1 started to get better and less dependent on me, Kid#2 seriously tanked.

Girlie said...
I guess both hubby and I won't be retiring until we're 70...I've lost over $300,000 with this disease - wages, appointment costs, supplements, travel to appts.

Could've done a lot with that money...sigh.


I try not to think about it. It's beyond depressing.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2473
   Posted 4/12/2018 3:41 PM (GMT -6)   
I gave up my job due to exhausting all FMLA, vacation, etc. My company/manager was understanding, but my kid's medical issues were so demanding that I just couldn't work reliably. I had to let it go, and to do this day, it's still hard to think about what I gave up. I still am coping with that loss.

Once Kid#1 started to improve, Kid#2 seriously tanked. It's been 6 years now since I gave up my job. I fear that Kid#3 is going to tank around the same ages that Kid#1/Kid#2 did. I have no idea when I can ever get back to work. Sometimes, I would look at job postings just to dream, but that was too painful too because I just can't logistically do it right now. Plus, my chronic fatigue (likely from adrenal issues from years and years of ongoing stress dealing with this) has really taken a toll on me, so I can't imagine most jobs are going to be understanding of me coming in like this.

The whole thing makes me really sad if I think about it.

Super sorry for all of you. Such a struggle.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.
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