1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

Working with Menieres?

Discussion in 'Your Living Room' started by Denise Rene, Jan 29, 2020.

  1. Denise Rene

    Denise Rene New Member

    15
    3
    3
    Jan 19, 2020
    Wichita, KS
    What kind of work can someone with Menieres do... like from home?
    I am on day 4 of an attack but I still need to bring in some moolah. Suggestions? Thoughts? Experiences?
     
  2. Bulldogs

    Bulldogs Well-Known Member

    3,210
    153
    63
    May 12, 2014
    Hey Denise,

    a lady in our Menieres support group is unable to work with her menieres so she started a dog sitting service 3 years ago.

    It kept growing and growing and today she basically runs a dog hotel and sitting service with her own building and a staff of 10 people.

    God Bless
     
  3. Mr. Tom

    Mr. Tom Member

    66
    6
    8
    Dec 20, 2019
    Where ever I park my RV
    Question, Denise, are you on SSDI? Meniere's is listed as a disability on the SS website.
     
  4. Clare

    Clare Active Member

    387
    79
    28
    Mar 31, 2018
    I had an MBA and an interesting career in management and finance. I was diagnosed with meniere's in 2001 when I was living in Vienna, Austria on assignment for the United Nations IAEA. A couple of years later I returned to the US and did freelance consulting. For a few years it was manageable because as a freelancer I could schedule my hours for the most part. But symptoms progressed to more frequent and longer phases of vertigo episodes. In addition, I began having more cognitive difficulty* and began to find errors, both obvious and consequential, in spreadsheets and client presentations. I could not in good conscience serve my clients properly.

    I chose to shift careers to apparel design and patternmaking (I had always dreamed of being a costume designer for the theater) and took some evening classes. It was creative, engaging, and fun for a couple of years, but as the meniere's symptoms progressed, time management became difficult, and it was stressful meeting client deadlines. I applied for and received Social Security disability, which helped relieve financial stress. After being completely incapacitated with months of unrelenting vertigo, in 2018 I had a labyrinthectomy. It's made a huge improvement in my life, but has not relieved -- and possibly made worse -- the cognitive decline. My brain now has to work extra hard to balance with half vestibular function while also trying to make sense of sounds with a little less than half hearing. These days I design and sew only for family and friends who are understanding.

    *We don't talk much about cognitive difficulties here, but they can be a side-effect of meniere's. Cognitive decline likely isn't directly caused by meniere's, but it is known to be associated with depression, stress, and pain. The doctors have described it to me as a matter of bandwidth, saying there's only so much neural pathway, and the brain prioritizes life-threatening signals over those for logic and general thinking.
     
    • Like Like x 3
  5. PleaseNoDizzy

    PleaseNoDizzy Active Member

    243
    29
    28
    May 12, 2014
    Clare, that is such a good point about the cognitive challenges. Also post laby, I have noticed changes and never know if it's Meniere's/laby related or just the fact I've hit my mid-40s. Food for thought, for sure.

    Denise, this probably isn't helpful but I work from home with my own web design company. Since it's freelance, I've been able to balance my client load against other stressors, like when my Meniere's symptoms were terrible. I had been freelance for a number of years before MM came into the picture so I was pretty much already set up with it. That was such a sliver of luck (well that and being married to an ENT-in-training, at my onset).
     
    • Like Like x 1
  6. Rich

    Rich Member

    104
    17
    18
    Apr 21, 2019
    West Virginia
    Just curious.... I gotta ask.... does your other half think there is a connection between virus and Menieres ?
     
  7. PleaseNoDizzy

    PleaseNoDizzy Active Member

    243
    29
    28
    May 12, 2014
    He's not convinced. He was trained in a very well respected program where that line of thinking remains "unproven" in regards to scientifically sound journal articles. He went along with me giving AV a try and did an ok job of not saying "I told you so" when that failed for me.
     
    • Like Like x 1
  8. redwing1951

    redwing1951 Well-Known Member

    1,477
    193
    63
    May 13, 2014
    New Hampshire/Florida
    My very well respected OTO agrees with your husband PleaseNoDizzy. He told me to get a second opinion that it "won't hurt my feelings" :)
     
  9. Denise Rene

    Denise Rene New Member

    15
    3
    3
    Jan 19, 2020
    Wichita, KS
    I am looking into it on Monday. Four days this week I was miserable with the dizziness. Sunday was so bad I was nauseous all morning at church. I have no idea what songs were sung, because I can't sit in the sanctuary, too loud, and I couldn't focus on the message because of the brain fog. The next three days were a continuation of the same. I miss more days now than I have in months. It is definitely getting worse.

    Thanks for the suggestion.
     
  10. Denise Rene

    Denise Rene New Member

    15
    3
    3
    Jan 19, 2020
    Wichita, KS
    Thank you all for your input and sharing. I appreciate all of it. One thing I am going to work on is a blog to track my progress as well as share my story and my hopes with others. My daughter is helping me with this which is great because my brain is gone most days.
    I have looked into work from home situations. Proofreading, editing, writing, resume and cover letter assistance. Nothing so far but I am trying. As for the web design, landing page, and all of that tech stuff... I have no clue how to do any of it but I am going to give it a go to at least get my blog going and maybe help others along the way. We will see how it goes.

    Keep the input coming. I read every one and I appreciate all the comments.
     
  11. imasteeler

    imasteeler Member

    118
    24
    18
    May 12, 2014
    Houston
    I work from home as an independent IT consultant - when the Meniere's hit, I was going to an office every day - I had to negotiate a work-from-home situation with my main client, a rather large Oil & Gas company here in Houston. They were very accommodating, since the actual work can be done from a computer and that can be accomplished from virtually anywhere nowadays. But, the number of hours I could work effectively started to dwindle - so I had to find more clients willing to allow remote consulting on an hourly basis with flexible hours and deliverables. Not an easy task. My independent hours went to almost zero for all of the last 2 years...

    My second job is playing steel guitar in and around Houston. This job has suffered quite some since the onset of the disease - however - I am now working for a group who are very understanding of my condition, and they are flexible if I need to get a sub for any specific gig. So far, it has worked out well for both of us.

    My experience with ssdi was not so pleasant. I consulted with several people before filing an application. I applied 2 years back with a very detailed and comprehensive medical history, a meticulous record of all incidents, and supplied documentation for every ENT or emergency care visit, etc. Basically a full history since the onset of the disease along with the financial impact it has taken on me.

    I was denied. Reason given was that my income was too high. I sent an appeal, arguing that the $0 income I was making at that time could not possibly be too high - but I lost the appeal. Reason for that was the average monthly income for the year I made the application was higher than the threshold for ssdi qualification. So, even though I earned $0 for a full 8 months prior, I was still denied. Didn't make sense to me. So, I consulted an ssdi legal specialist (who advertised in the Wall Street Journal). She talked me through what the SS Administration does with ssdi applications these days, and further advised me that Meniere's is especially hard to prove a case for.

    So.... I gave it up. I stayed as busy as I could working independantly and playing gigs, and working with my wife in her business - but in the end I had to find another job working from home with flexible hours doing the same IT work for another client. I started last December, and so far all is working out great.

    But I haven't had a serious episode recently, so …. not sure what will happen if that should occur.

    I try to stay optimistic and hopeful though...

    Wishing you the very best of everything in any case - I hope it works out for you...!

    JMC
     
  12. Mr. Tom

    Mr. Tom Member

    66
    6
    8
    Dec 20, 2019
    Where ever I park my RV
    Strange, imasteeler....... When I applied for SSDI I filled out the application and the next thing I know SS sent me to a Dr. for eval of my RA to 'enhance' my claim (their words). All that Dr. said after he was done was "Yep, you have orthopedic issues" and I was approved. There was no mention of past income. The only bad thing is waiting six months before receiving funds
     
  13. imasteeler

    imasteeler Member

    118
    24
    18
    May 12, 2014
    Houston
    Yep... I have heard it all depends on who picks up your claim at the start and how well you document the impact to your health and finances. But... didn't work for me.
     
  14. Autumninthefall

    Autumninthefall Active Member

    198
    75
    28
    Aug 10, 2019
    Regarding the cognitive issues, I believe I’ve posted this before, but I once read a description that compared the brain to a jet, and the vestibular system/ears would each be an engine. The jet can fly if one of it’s engines burns out, but it won’t be optimal, and eventually that other engine will get so over worked the jet has to land.
    It’s the best analogy I’ve ever come across. Wish I could remember where I read it!
     
    • Like Like x 3
  15. AnneT

    AnneT Well-Known Member

    1,021
    205
    63
    May 14, 2014
    Alberta
    Hi Denise,
    Interesting, I also have a tough time in church. Live music is a challenge, which sucks because my hubby plays cello in a community orchestra, and we both play on one of our church music teams. I drug up and just do it. I just about fell over in a noisy cafe today with a friend (those noisy coffee grinding barista machines omg!) so we sat outside, even though there's still snow on the ground.

    Meniere's, plus pre-existing fibromyalgia/chronic fatigue syndrome, killed my career as a family physician and med school teacher. It then derailed me from finishing art school. I'm fortunate to have enough savings and my husband's income that I can be the homemaker (sigh - not something I ever planned on!!) and I have a lovely home studio.

    If I had to earn money, I'd probably teach art, and push harder to sell my art, and let people know my financial situation.... I'd like to do in the art business more in the future, but Meniere's kind of knocked the ambition out of me for now, and I'm focusing on vestib rehab, walking, healthy eating, just enjoying stress-free for now. I would/could also rent out part of our home to students.
     
    • Like Like x 1
  16. Autumninthefall

    Autumninthefall Active Member

    198
    75
    28
    Aug 10, 2019
    I went looking for vestibular information of a different kind, but found that vestibular.org hosts an entire job board for the chronically ill who need to work from home. I wasn't aware of it, and thought I'd share in case you weren't either. How's the job search going for you?
     
    • Informative Informative x 1

Share This Page