LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » Update : Returning to work !

 - UBBFriend: Email this page to someone!    
Author Topic: Update : Returning to work !
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Entering month 11 of Lyme treatment.

Probably at 75% function 4 out of 7 days.
I just how no clue what days will be which, good or bad ?

Returned to work 1 day a week last month.
I started with a 4 hour shift.
Just worked a 6 hour shift.
Man, this is tough.

I'm unable to commit to a set schedule at this time. My employer has been a god-send. When an employee calls in sick, my employer will call me first to see if I'm able to work it.

I have found an ingenious way to work around my disability.
On days I feel well enough to work, I will text the days line-up of employees and ask if they would like the day off.

This seems to work for everyone, the employer(because the shift will be covered), co-workers( extra day off), and me with the up and down lingering symptoms.

It's a far cry from my previous status. I'm starting all over again. I'm at the bottom of the totem pole at this stage in my career. So I m gonna make the most of it, it will not stop me !

I have short-term memory loss.
This reminds me of my first day back.

https://m.youtube.com/watch?v=Fsh47iNVRkM

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
HW88
LymeNet Contributor
Member # 48309

Icon 1 posted      Profile for HW88     Send New Private Message       Edit/Delete Post   Reply With Quote 
Congratulations!!!! I'm a lot further into this treatment than you and I don't think I could handle the stress of a job along with my 4 kids and . . . everything.

You got this!!! wahoo!

Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Are there some tall stools behind the bar where you work where you can rest a bit while you do some tasks?

Hope you have very supportive shoes for they really matter, too, with good arch support. That can help the entire spine and brain as well.

If there are any changes that others might not notice or mind with lighting, [If any CFL, fluorescents of any kind are used, best to swap with LEDs, although mood lighting in restaurants and taverns might not involve harsh lights at all)].

Any fluorescents can flicker but might not be outwardly noticable to many. Those with neurological issues should avoid them everywhere they can. It's a brain stress, to say the least.

Lights on a dimmer can be problematic for tender brains, though, whatever type.

or with music, bass vibration or pulsation level, etc. be sure to consider those as well to lessen any sensory impacts.

You don't have to insist on Pachelbel's Canon in D set on loop yet even very minor changes to the intensity or the equipment mix could matter greatly.

Chemical air fresheners (say, in the rest room) should be changed out with non-toxic ones to also help lighten the very real "hits" and overall sensory & liver load (for you and, well, others, too).

Chemicals used to clean that you might get a whiff of, even if in containers, also can be a "hit" - and BETTER LIFE has safe cleaning liquids or check with EWG.com

If those with whom you work wear scents, and if they trouble you, you might seek out some lighter flower or plant based essential oil scent they might be willing to trade. This can be tricky, however, and customers' scents can undo any changes in an instant.

Maybe, though, your scent stuff is all tip-top and not easily toppled.

Use a paper towel rather than a loud hand dryer to also lighten the sensory stress load while you are there.

Who knows, what helps you might just help everyone else and also customers might find it's a more enjoyable environment.

You might become the honored ambience consultant. This is a job that I would be so very excellent at, for sure!

It is a job that some get paid big bucks for though, most likely, they've never met the likes of my sensory filters. But, dare I say, if many environments were kinder people would be happier and less stressed.

Good luck. I hope you can enjoy your time back with folks as they unwind.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
At least you're in a supportive situation, with others willing to swap days with you - we generally need to make modifications so we can function, so this arrangement is in the ballpark, so to speak!

One plus we get from a Lyme experience - we're used to having to think flexibly! I don't think we are like our old self or even the usual workaday world - we have a new normal, which is creative.

Posts: 12921 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
Congrats to you bartender for getting some our your life back.

Keep up the great work and don't ever forget to take care of you.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6394 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for all the support, much appreciated. :
HW88, you will get there, please believe it.

At this same time last year, I was in a lawyers office, so sick, crying, and making out my will. (nothing left now).

So yeah, I ve come a long way. It's a blessing.

Tincup kept telling me "You will get better."
And she was right.

I just got a text asking to work tonight.

But I'm sitting in my recliner recieving my IVIG infusion. It takes 3 1/2 hours, after which I get extremely tired.
Unfortunately I won't be able to make money tonight.

So you see, Lyme is always front and center. . . . . . . . . .

Keebler,
No sitting allowed. And there's no complaining about smells, lights, or sounds. But a customer complaint is worthy of changes. You would make a most excellent ambience consultant, for sure.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bonnie, I am SOOooooo happy for you!

VERY creative! So great that you can work a little, in so many ways.

Your post will be an inspiration to many.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
That's so wonderful, Bonnie!! Congrats!!

[woohoo]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94228 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just have to add. . .

My only regret is that I wish I had found my way to lymenet sooner.

I would have been able to find an LLMD sooner,
I would have been treated sooner before it became neurological,
I would have been able to avoid so many non-believer medical professionals,
I would have been able to avoid so many un-necessary tests.I I would have avoided wasting so much of my precious time.

Oh yeah, I would have been better so much sooner !!!!!!!!!!!!
Stay the coarse, keep treating, keep fighting. 💚❤️💙💜💚

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Way to go BB! Hope all works out for the best!

[hi]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4713 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wonderful to hear, BB! This sounds like a very creative and practical way to get back into the work force, gradually and when you are able and ready. It is a win win - benefiting both you and your boss. What a great plan! [woohoo]
Posts: 2312 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
ilovedogs
Member
Member # 48866

Icon 1 posted      Profile for ilovedogs     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great news. Thanks for sharing!!!
Posts: 88 | From new england | Registered: Oct 2016  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
So proud of you! For so many reasons.

:group hug:

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20278 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I haven't worked in 2 weeks but thanksgiving eve I got a call asking if I was well enough to work that night. I said yes.

Thanksgiving eve is a busy, busy bar night. Family members come back into town to meet up with old friends, neighborhood chums, former co-workers, and family members to catch up on theirs lives and to PARTY !!!!

I worked 5 hours.

The next day, thanksgiving, I thought I got hit by a train. Splitting headache, spinal cord and feet screaming in pain, tinnititus, vertigo, extreme fatigue, tremors, and difficulty speaking and finding words.

Totally relapse. Very heartbreaking.

Made it to family gathering by the grace of God. Got home early and went straight to bed. I slept all day and night yesterday.

It took me 3 days to recover. Today I feel so much better.
Honestly, this disease is so debilitating. I don't know how anyone can have a set schedule for ANYTHING.

So much wasted productivity, strain on resources, millions of sufferers disabled, stuck down in the prime of their lives.
Devastating to the sufferer, their inner circle and the economy.

We need help. Lord hear our prayers. ❤️

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bonnie, the only thing that comes to mind when I read your post is that I hope you are doing the one continuous hour of weightlifting every OTHER day.

I think this is what finally gives us our endurance again.

I think it takes about 3 months of weightlifting every other day to see the difference. When it comes, it is amazing and so wonderful.

Still, taking only 3 days to recover from 5 hours of busy work continually standing is not bad! It really isn't.

And, if you worked Wednesday night and are better today, that is really just 2 days to recover. (Thursday and Friday)

I agree your symptoms for the one day were pretty bad. But, the continually sleeping like you did yesterday is typical.

Please don't see this as a total relapse. Not at all. A 2 day "relapse" is really a 2-day post-exertional malaise. A PEM!!!

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
TF
Thanks for keeping everything in prospective for me.
When you're in the battle, it's hard to see the big picture.
You are so right, it was not a total relapse.

After reading your post, I feel much better. Your a gem.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
[Eek!]

So sorry sucky hit you like a brick wall! Good grief! Good to hear you are feeling better now.

Don't know if this will help, but I plan, if I must, to do one thing one day, then nothing the next day.

It always doesn't work out that way cause plans kind of pop in when you least expect them. But, when looking at your calendar you might try keeping that in mind for a while?

You may even need 2 days off to one day "doing something"? Just please don't beat yourself up when you hit the floor after an event and when you are TRYING!

If first you don't succeed, go yell at the moon... "BITE ME".

Works for me!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20278 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm yelling at the moon tonight Tincup.
And it's a huge RED moon.

So I figured out why I have been struggling something AWLFUL this past 11 days with waxing and waning symptoms.
And it has nothing to do with returning to work, I think.

I had another change in meds two weeks ago due to reoccurring spinal cord pain.

I am experiencing a herx, not a flair.
Just when things starting going really well for me.

Today I have painfull scalp, exhaustion, purple haze around lights and the moon tonight, wide-spread muscle pain and spinal cord pain (wearing lidocaine patches),can't get comfortable, swollen belly, gas, out of body experience, feeling funny, blurry vision, very quiet, want to be left alone.

Got to ride it out, step up detox, and remain calm.
This too shall pass. I will beat this.

Keep treating, keep fighting, just keep standing.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sounds like you have analyzed the situation correctly! Every change of meds will affect you.

In fact, when a change no longer brings on symptoms, it is time to celebrate!

Your plan is exactly right--more detox, endure, and remain calm. This is so wonderful when the patient knows what is going on and what to do about it.

I pray that this will pass very soon! You are really on your way to wellness now, I believe.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Uh oh BB, you on cyst busters? Those are some really tough symptoms to deal with. Be kind to yourself and don't push it. I couldn't do much of anything during my treatment years.

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4713 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
You are doing great sorting out the cause of symptoms! An expert I'm afraid due to experience. That sucks!

Please write it down on your calendar when the herxing started and stopped so if you feel poorly again you can get an idea of when these symptoms may hit.

I have herxed a LOT for decades whenever on antibiotics, the kind of herxes that knock me flat out, and still to this day go several days if not longer feeling that way and don't know why.

DUH ME!

One of my clues that I am herxing now is that my eye balls hurt, sting, ache.

Good to know your turn down wasn't "job related"! Feel better soon little baboon!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20278 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
HW88
LymeNet Contributor
Member # 48309

Icon 1 posted      Profile for HW88     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bb, I'm sorry for the dip. I find it really really hard to feel like you are making good progress and then herx, or take a step back.

Mentally, I have to keep telling myself it's just my step back and then I'll take two forward. But so hard. Hold on.

Tini, one of my herx symptoms is burning/hurting eye balls too. Weird.

Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
thanks HW88

This is very hard.

When it's a step back, it isn't just 1 or 2 bad days.
It's weeks to months to get back to feeling better.
A crushing marathon. Our poor bodies. . .

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Haven't worked in 15 days.

Got a call last night to work today. A 6 hour shift. I said yes.

I ve been so sick since thanksgiving. The past 3 days, bedridden with shakes and extreme fatigue. Plus a lot of other things that just seem normal anymore.

Praying that today I would be better. Unfortunately I am not.
I promised myself last year that I would never put myself in this position - working while so sick.

There is no way I cannot go in as I committed myself.
I should have committed myself into the nuthouse for thinking I could do this. I m trying to will myself into thinking Lyme has NO power over me today.

Wish me luck Lyme warriors. It's going to be a very bumpy ride.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Home.

Changed into p.j.'s in 5 seconds.
In bed. Tea and bowl of soup.

Tomorrow I will have my answer based on how my body feels.
Mentally I'm on top of the world. Didn't feel that way this morning.
Physically, let's not go there.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
I will anxiously await tomorrow's report!
Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh no BB! Rest and drinks plenty of fluids.

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4713 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
BUS1000

License plate of the bus that hit me.

I must say, mentality, it was worth it. It gave me hope.
I somehow accessed into my untapped reserve tank of physical and emotional strength. Our bodies are so amazing.
It knows to set aside these reserves for turbulent storms.

I got to fill up my tank with some much needed hope.
Hope, hope, and more hope.

The daily struggle to survive must have a component of hope.
Hope is vital ! ! !

P.S. Where's my Academy Award for Best Dramatic/Comedic Actress performance at work yesterday ? 🏆

akinwlf - you are so sweet. Yes, I am on cyst busters. Flagyl pulsed on weekends, herbs, Plaquenil, antibiotics daily.

P.S.S Today is pamper and baby my body. Staying in p.j.'s and warm plush fuzzy robe. I wear my robe inside out because stupid manufacturers always put plush fuzzy side on outside instead of inside.

P.S.S.S. Sorry about my drama. I just got a call to ask if I could work again today. Wave of indecisiveness and guilt. Said no, physical body unable to perform. So need the money. Opportunity many don't have.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good to hear from you!!!!!

And good to see that you have some humor also today!

Glad to know that you turned down offer to work today. Cudos to you for that wisdom!

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Work + Lyme = Balancing Act.

After 1 full year of aggressively fighting Lyme and company, I have realized that that in itself, is WORK.

Treatment is time consuming. Fitting in antibiotics, supplements, probiotics, weight resistance training, epsom salt baths, preparing healthy meals, proper sleep and rest, reducing stress, doctor's appointments, IVIG treatments, constant blood work, and the relapses, flares, and herxs is enough to wear anybody out !

How do people work with this disease ? ? ? ? ? ?

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
You already answered this question: You ARE working!!!

But I know what you mean, of course. How the heck does anyone work while fighting this? With great difficulty! If it's even possible. Some have no choice, of course. For some it's physically impossible. Of course, you know all this. Sigh, wish it weren't so.

I wish I could still work!

Posts: 3643 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just finished month 14 of treatment.

I haven't work in over 30 days !

Because of severe spinal cord pain, I added acupuncture.
It did not help, no noticeable improvement

I also had trigger point injections.
It did not help, just left purple bruises on skin.

I finally picked up a 6 hour shift 2 days ago. I feel horrible. Stayed in bed. Deflated. Sipped green smoothie and soup.

I have total exhaustion. I look so tired and old.

Went to Mom' house, as she is struggling with injury. Layed on couch in-between helping her with daily personal needs.

Times are hard presently.

I am simply unable to work.
Sorry I don't have a more positive update.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
HW88
LymeNet Contributor
Member # 48309

Icon 1 posted      Profile for HW88     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hang in there BB. I'm sorry things are hard right now. The ups and downs of this disease are exhausting.

Take care of yourself. Others have gotten better, we have to believe we can too!!

Sending hugs!

Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hang in there BB! I finished treatment in 2007 and went back to work PT in 2011. Gradually worked up to full time by 2014 and then close to 50 hours a week.

Not working now due to other issues but plan on going back to work.

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4713 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
So sorry BB. It is hard taking care of yourself and others you love - when you have this awful illness. I'm sure that is playing a part. Keep doing what you've been doing and try not to get discouraged.

This damn disease is such a marathon with many backward steps in between the forward ones. Sending hugs and prayers your way. [group hug]

Posts: 2312 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you so much for the kind words.

In the back of my mind, I was thinking maybe my house was keeping me ill. My house is very, very old. But since I ve been spending so much time away, I haven't noticed any improvements one way or another. So I guess I can eliminate that possibility.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
LisaK
Frequent Contributor (1K+ posts)
Member # 41384

Icon 1 posted      Profile for LisaK     Send New Private Message       Edit/Delete Post   Reply With Quote 
oh wow, to think to work again!
I can't imagine, but it is a fantasy of mine. maybe one day. and you BB should be very proud of yourself for trying. [Smile]

for me, one day my body feels great, then my brain is twisted into a dizzy mess and vice versa around it al lgoes, so work for me is maybe just a pipe dream.

hang in there! we do what we can do.

@ your house- mine is a sick house for sure. there is a really good book (if I could just finish it!) called out of the shadows or something . about a woman and her journey with a moldy house

right now my house is not so bad because it is winter, but then comes spring!

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3343 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
bartender, if your home is moldy and emitting bad guys.....just leaving the home is not going to make you feel better.

The mold/fungus/toxins are embedded in your body. I'm sorry to announce bad thoughts.

But maybe your body is trying to whisper things to you.....

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6394 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
map1131 says;

"But maybe your body is trying to whisper things to you."

My body has never learned to whisper. Body likes to communicate by hitting me over the head with a frying pan. [bonk]

I just had to make the dreaded call to my boss to call off tomorrow shift. My 1st shift in over a month and I am physically unable to work. Unbelievable !

Pain is controlled. Today's meltdown caused by sinus infection, extreme fatigue, vertigo, constant tinnititus, and crying jags.
Bedbound and riding the storm out yet again. . .

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
LisaK
Frequent Contributor (1K+ posts)
Member # 41384

Icon 1 posted      Profile for LisaK     Send New Private Message       Edit/Delete Post   Reply With Quote 
there is a homeopathic item for mold I take. it really helps.

It is called BIO-DETOX FORMULA by PPH- Professional Health Products. I really really helped me. It is strong and will make you herx, so use lightly first. You spray it on your tongue.

Also what helped my house since we cannot move! was a ton of tea tree oil in a slowcooker (with some water) in the basement. it really helps clear the air.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3343 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you for replying everyone.

I never thought a tick bite could do so much damage and take me out of living a purposeful and productive life.

Entering year 6 of sickness.
Antibiotics and steroids for chronic sinus and respiratory infections kept me working for 3 of those years. Until my immune system just gave out, took me out of the game of life.

I achieved glimmers of wellness, had days where Lyme NEVER entered my mind. I will do it again ! 💚

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330

Icon 1 posted      Profile for MannaMe     Send New Private Message       Edit/Delete Post   Reply With Quote 
LisaK, you are saying you set up a slowcooker in the basement with tea tree oil and water? With the lid off I assume?

How much water and how much tea tree oil?

Our basement smells musty and I'd like to try it.

Posts: 1498 | From USA | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Sammi
Frequent Contributor (1K+ posts)
Member # 110

Icon 1 posted      Profile for Sammi     Send New Private Message       Edit/Delete Post   Reply With Quote 
MannaMe, a dehumidifier works wonders in a musty-smelling basement. It is worth the price it costs.
Posts: 4677 | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
etb6855
Member
Member # 48383

Icon 1 posted      Profile for etb6855     Send New Private Message       Edit/Delete Post   Reply With Quote 
BB, I have not been on here in a couple of months and was so excited to see the subject of your original post; I feverishly read through it with hope as I have been unable to work since 5/16 and NO income still since 8/16 when STD ran out.

I am so sorry for your downturn! I originally logged on to get support today as I seriously feel like I'm dying...when will they find a reasonable, covered by insurance CURE for us all?

Posts: 86 | From LA | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh no etb6855

Not you too. . . [confused]
We try so hard to get well, bankrupt ourselves, drive ourselves, our family and friends to exhaustion over our health woes, and get chastised by the medical mainstream.

This can't be real. This can't be happening. Nothing makes sense. Yet nothing ever changes over our lack of medical care.

The past 6 weeks have been AWLFUL. According to my journal, I lived through this evil spinal cord pain in month 3 and 4 of treatment. I survived it. So I'm not throwing in the towel now because I still want my life back.

Over this weekend, contemplated going to ER.
Rode it out till today. Need help. In trouble.
LLMD said to come in. Can't afford to see twice in 1 month.
Got in to see primary, insurance covered.
Waited 2 hours on a Monday, so happy they squeezed me in.

But. . .
No pain relief. Gave me 2 pages of stretch exercises. Diagnosised with muscle knots ! Main-stream medical doctors are useless with TBI's. They are so evidenced based over tests that don't exist for us. Herein lies our demise.

I have tremors in my jaw and my teeth chatter. Legs, feet, and skin are numb, feels like serious infection in spinal cord and vertebrate bones, so dizzy, scared this is gonna be the end of me, and pain is uncontrollable with my bag of tricks. Just please, pretty, pretty please, give me a shot in my ass and let me be on my way. I'll do the rest. Lyme patients are not wussies, we KNOW what pain is.

I am flipping mad. But I am also more determined to clog up my other provider's practices till I get relief. Back to playing games. Chronic Neuro Lyme is REAL dammit !!!

To everyone at lymenet that is having a rough time of it, please stay in the battle. You are so worth it ! Much love. 💚

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bonnie.. I am so sorry you are suffering so much!! We're praying for you!! Hang in there and keep knocking on doors!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94228 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Update ;

I have only worked 1 shift in 60 days. Not good guys. . .
Days turn into weeks, weeks turn into months.
Standard operating procedure for Lyme.

So much wasted time. So much I want to accomplish. But I'm on Lyme time, not regular time. You guys understand that more than anyone else.

I will get to where I want to be. Stay the coarse. Never give up.💚

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Update;

Finally worked after 90 day absence.
Financially broken. Exhausted all avenues.

Once again, you smile and play the part.

Severe pain in spinal cord and feet.
Fatigue and brain fog.
Bedridden.

Other than that, I can't complain.
Keep treating, keep fighting, just keep standing.

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sending good thoughts, vibes and prayers your way BB! You're not in that deep dark pit alone....here....feel that? That's my hand grasping your hand.

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4713 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hang in there, Bonnie. One day at a time.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94228 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I know this is a L O N G thread about my journey towards returning to work.

And I thank each and everyone of you for your encouragement along the way. Thank you, thank you, thank you . [group hug]

I finally have the support of family, friends, and long lost customers.
I advocate, educate along the way.
Words alone will NOT make a difference.
In order to make a difference in MINDS. . . they must SEE the proof, in your EYES, your HEART, FACE to FACE, as one struggling human being to another. In other words, the human connection, which is so hard to convene with such an isolating disease.

I thank God for the fighting spirit, I thank my LLMD for getting me to this point where I could even consider going back to work, and I thank Lyment for being there every step of the way.

I cannot support myself at this time.
But I have had glimmers of what once was, and maybe can be again.
A sweet gift. Wanting more, unfinished buisness.

Regardless of outcome, which in essence we really have no control of, within our own means, if we can tell our tale, a remarkable tale that it is, people will listen. They will listen. It is first-hand account from someone that will not not lie to them, they trust us because we are a trusted soul. We matter to them. This is where our strength lies.

Advocate, educate, until your dying breathe, my friends.
So that the next warrior lives a better life than us.
Keep fighting and NEVER give up ! 💚

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
HW88
LymeNet Contributor
Member # 48309

Icon 1 posted      Profile for HW88     Send New Private Message       Edit/Delete Post   Reply With Quote 
You are a positive force for good. I'm glad you are seeing a few better days.

Hugs, friend.

Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
Ann-Ohio
LymeNet Contributor
Member # 44364

Icon 1 posted      Profile for Ann-Ohio     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hear! Hear!
and good on you, Bonnie!

So inspiring!

--------------------
Ann-OH

Posts: 817 | From Ohio | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
LisaK
Frequent Contributor (1K+ posts)
Member # 41384

Icon 1 posted      Profile for LisaK     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by MannaMe:
LisaK, you are saying you set up a slowcooker in the basement with tea tree oil and water? With the lid off I assume?

How much water and how much tea tree oil?

Our basement smells musty and I'd like to try it.

Yes MannaMe!
It has really helped us to do this. you go through a lot of oil a couple of times (we did) but its worth it.

we run 2 dehumidifiers in our basement- one on each end. I only did the slowcookers about 7n times. there is an actual plan to doing that if anyone wants to PM me.

I have the directinos somewhere and I can look it up. I didn't follow the plan exatly because my brain forgets so much, but I got the idea from an article about a man that couldn't even walk or do much that researched and got well just from detoxing

himself and his house from mold. also did the foot baths- and they give instructions for that too.

I have also taken white vinigar and/or teatree oil and sprayed it direct on the mulch outside our windows because my husband had gotten

the free mulch from the township and it was very moldy.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3343 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Working 1 night a week.
With 2 herniated discs and a festering TBI illness.
On the brighter side. . .

This really handsome blue-eyed man always comes in
and I always ask him his name
and he always says I always ask him his name
and he always tells me his name is Jim
and I always tell him I will never remember such a hard name.

Keep smiling [Smile]

Posts: 2018 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well that is certainly something to look forward to bartender.

Are you dreaming about blue eyed man named ???

Maybe since you've written about this blue eyed man, you will remember Tim. [Big Grin] [Roll Eyes] Too funny.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6394 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.