How many here are unable to work

My long term financial situation has been weighing on me pretty hard lately, given I've been unable to work for over 6 years now. It seems sometimes that most in this forum are fairly active and are holding careers/jobs. Is that the case?

At the beginning I was trying to stick it out. But my balance and fatigue made it impossible. Had to quit. Once I get more stable on my new protocol, I hope to move into a more sedentary job.

Good luck.

sierraDon said...
my flare happened in January 2018, and i went out on STD at that time. i stayed out through July 2018, and was forced to return to work last week due to getting LTD approval - it was not by choice. basically i feel i like i am back to where i was last fall, with trying to manage work, symptoms/healing but now have meds in the mix.

i don't know how long i will be able to pull it off, and i am trying basically to pay the bills (with the added expense of all the lyme medical bills.)

trying to be hopeful that things will improve too

Do you see some improvement when you get on a steady protocol?

I was only working part time, and as my symptoms grew, I cut down to twice a week... then once a week... then we moved out of state and I gladly quit. I was not able to get another job in the two years since. As I recover, I test my endurance with getting more done around the house, cooking, and getting back to my hobbies - art and music. Once I can maintain a house and 2 appointments a week without getting overwhelmed and burnt out, I figure I can start to think about handling a job. But for now, just keeping the mold and dust out of the house are overwhelming. Not ready for work yet.

I also remember the demeaning relationships with bosses and corporate offices treating you like a robot slave piece of trash. No way I could subject my mind to that - Lyme/Bart/Babs brain and psychosis is enough to fight.

I was misdiagnosed for 5 years. Since having been found to have bartonella i did 8 months on Buhner herbs with no change and am now on abx for 5 months but also no change. My current doc believes i have mast cell activation and i believe he's right, but also 5 months of heavy antihistamines and low histamine intake, still no change.

I just crossed 7 years and that is weighing on me considering I've had zero improvement. The depersonalization/derealization and psychosis are so thick, i would crawl through Ramadi for a cure

6 years for me being infected. I've had the same job through out and have not missed days more than a day here or a day there.

The problem for me is that my job is the only income at home and our insurance is tied to my job so I cannot afford to quit or lose my job. It would be devastating for our household. Our medical bills eat up whatever little money we have left over after paying the bills. Actually, they eat up more than what we can afford. I am waiting for the next paycheck to order some herbs that we ran out of. With my wife and I being infected, it does become expensive.

Our insurance is HMO so it doesn't pay for the Lyme doctor, who by the way, is ultra expensive. And I have to pay out of my pocket for him.

As far as being able to work, I have to take my treatment very slow. I can't afford to crash from a herx or strong medicine. The only time that I can start a new medicine or herb is on Friday so that I can use the weekend to get used to it or bring down the herx. So no matter what happens with the new medicine, I have to be ready for work on Monday. There has been days when I just sit by the door wondering how I am going to make it to work (90 miles commute through heavy traffic), much less function at work.

My wife, who is infected, has not been able to work for years so she stays home. She is a strong cookie and if it wasn't for her support, I would not have made it this far. It does kill me though to see her so weak and fragile, specially knowing that she got the infection from me. She doesn't think that I know this but I have seen her miss a dose when we are running out of the herbs so that I can have it instead.

I even tried doing a part time job at an automotive parts store. I did that but my mind was so foggy that i could not learn the new cashier system so eventually I had to quit. I am limited to the types of jobs that i can do because of my fatigue. Most jobs require you to carry heave stuff, something that I can't do.

Well, I better stop here. I am getting too emotional just thinking about it.

So far I've been able to keep working, but the downturn I've had over the past year makes me wonder if the final straw is coming any moment which will prevent me from working again.

We have retirement accounts but we are probably a little behind of where we should be in retirement. Yes, I am the financial worrier in our relationship. It still bugs me but I realized none of that stuff matters until my health is improved. Things like retirement, buying a house, miscellaneous financial goals will have to wait until a later date. It's not ideal but life isn't fair sometimes. If I worry myself to death over these issues I will become stressed out and I will not be helping my health.

To be fair, I think I also don't freak out because we are still relatively young (early 30s) and I know when we are both working we can sock away money quickly as we both are capable of living frugally. Those two years we were both working we paid off over 60K of her student loans in 15 months. We were also able to build up a buffer fund in case stuff goes wrong, as it always does, during my work hiatus.

I am somewhat concerned about retirement.

A couple years after we got married, I quit my job to be a stay at home mom - with the plans of going back to work when our son gradded.
Husband had a decent wage to live on but not much leftover to put away in savings.

In 2008 I went back to work part time when son was in high school.
It was great to have two incomes.

2009 company shuts down and hubby is out of work.
He does odd jobs for a few years and then in 2013 gets a job that has great benefits and decent pay -
Yay !! We can catch up now!

Later that year I get sick - and it’s been very difficult financially.
We still have our house but we are gaining debt.

I’m trying really hard not to regret being a stay at home mom for 14 years.

I last worked March 2017. I was diagnosed with CIRS from mold in Sep 2016. I did the ERMI test on my house and office area. Both were remarkably similar. The HERTSMI-2 score on my house was 10 and office was 8, so not horrible. Total ERMI scores (Cat 1 plus 2) was under 30 at home and just over 30 at work. I'd read that OSHA says anything over 30 is a cause for concern.

At the time, I was starting to have tremors and balance problems in addition to a host of other symptoms. My symptoms first started in Fall of 2009. At that time, my conditional gradually improved but new symptoms randomly popped in and out as the years went by. Then in April 2015, I got bronchitis followed by insane inflammation that blazed a trail from one part of my body to another and included 4 months of asthma-like symptoms followed by multiple eyelid infections, hormone upheaval and onset of perimenopause, and IBS-C.

When I was told I had CIRS from mold, I had been sleeping in a recliner for months because I was scared to sleep in the bed. I was waking up multiple times in the night not breathing and gasping for air. I had dry eyes and mouth so bad my eyelids would stick to my eyeballs and my tongue and cheeks to my teeth. I was still working through all that and googling symptoms like crazy all day at work, as my symptoms were all consuming. I felt like I was literally going to die if I didn't find out what was wrong with me.

Once I knew about CIRS and the ERMI results, I fled my house and my office. I didn't really even care about my job at that point. I felt like my life was at stake. Thankfully, I was allowed to work from home (the relative's home that I fled to) for 6 months. I kept seeing the doctor who dx me with CIRS and did what I was told, hoping to recover but not really knowing what any of it really meant in the longterm.

I did not recover. After 6 months, I was told I could no longer be authorized for telework as it was apparent that my medical condition was not short term and that other avenues would have to be pursued. They advised me to go through disabilty accommodations and offered me an air purifier, EMF reducing computer shield, and a mask. I was supposed to have the doctor review the accommodations and determine if they were sufficient. The doctor refused to cooperate. It was horrible. I can't even remember all that followed. I ended up on 12 weeks of family leave followed by months of LWOP and was placed on the donated leave program. I was so mentally stressed and incapable of thinking clearly that I didn't know what to do.

Finally, someone told me to go to my regular doctor for help, and I did. He gave me the medical documentation that I needed to be able to file for retirement under disability provisions. I filed in Dec, and it will take 12-18 mths to get a decision. I've already been denied SSI. If it were not for my parents and family, I guess I'd be on the street. My dad just passed away last month, and now my mom's income is half what it was. We are house hunting this week.

The main reasons I lost my job when I did was because of mold, chemical, and EMF sensitivities. I was already having a slow cognitive decline and reduced stress tolerance that had begun some years prior.

Over the past almost 2 years since the CIRS diagnosis, I have learned I had Lyme and coinfections and started self-treating with Buhner's. I have fewer overall symptoms than I did 2 years ago, but not any real improvement. I feel more disabled both mentally and physically than I did then and wonder how I was able to work as long as I did.

I can't even think about working again until I get in a mold-free home of my own and a stable environment and routine. Just thinking about what will happen when I exhaust my savings (will be a few months) or if my mother dies gives me nightmares and feelings of panic.

I cannot work in a moldy or water damaged building ever again. I still have chemucal sensitivities which are almost worse than the mold and sometimes EMF sensitivities. I feel like whatever job I do in the future will have to be on my own terms at my own pace. I'm sure I have PTSD. I have almost no stress tolerance now and get flustered or panicky at the least thing that requires focus, thought process, or making a decision that has any bearing on my well-being. I feel like if I could just get in a safe, comfortable, stable environment that maybe I might have a chance at some real improvement. I could be wrong, but right now it's what I have to hope for.

Aerose91 said...
Sounds like youre financially sound which is always benefitial. It's the retirement accounts and buffers for later on that hang on me the most. I blew through everything paying for medical bills and am in the process of bankrupting my parents now, too

I'm so sorry you have to go through this. I hate that this illness ravages people physically, emotionally and financially.

I was lucky. A friend that I had not talked to in over five years contacted me when another friend of mine informed him I was struggling with Lyme and my first treatment of ABx didn't remedy the problem. He shared his story with me. I had no idea he has chronic Lyme. He spent (more likely his parents spent) 100K on treatment. He told me he went to New York, DC, Arizona among others. He said he was doing the best he had been since his initial antibiotic treatment at that moment and all he was doing was Bee Venom Therapy. He said BVT gave him his life back. It costs a fraction of the price of more "traditional" chronic lyme therapies. I'm keeping BVT in my back pocket.

His talk helped me not to financially destroy myself and my family trying "maybe" therapies. I don't discourage anyone from doing anything but I do think you have to weigh cost versus effectiveness. I would pay ANYTHING if there was a silver bullet. Unfortunately, there doesn't seem to be a silver bullet.

Healing98 said...

Aerose91 said...
If i may asl you guys a more personal question. Since you're still managing some work, do you have a retirement account? 401K? Something like that? Not having anything of that sort scares me the most. I was on a rapid financial rise when blam- got sick. Due to misdiagnosis i had bankrupted myself bbroke, the first year

We don't have neither a retirement account or 401K. In 2008 My wife, my daughter and I lost our jobs. I was out of a job for a year and my wife for two years. In that time we used up our life savings, 401K, and sold much of our possessions to pay the mortgage, bills and put food on the table. After a year I found "a" job but it paid half of what I was making. It was enough to pay the bills so I took it. 3 years later we got sick and so here we are; sick, broke, and barely surviving. But as I tell my wife- as long as we are together, let's take it one day at a time. I was sure that I was going to die the first year and look, here I am six years later and still breathing (well, barely).

This is such a depressing thing to read, im so sorry. I too had to sell everything of value that i owned for medical expenses and have been living in my car ever since. I'm glad you have your wife and daughter, it sounds like you are all supportive of one another and having that is more precious than you know

Aerose91 said...
Seems like you guys tend to fluctuate depending on treatment then, huh? I've never had that. For 7 years now not a single treatment, med, therapy or supplement has done anything. My baseline of this disease doesn't budge

I'm so sorry Aerose - that you haven't had any improvement for 7 years of treatment.

Have you been to any of the very experienced LLMD's for a second appointment? (ie Dr.J clinic...or Dr. SP...or Dr. H.?)