Working

[shayden]

I have been working for a wonderful company now for approx. 4 years, which is about when the POTS symptoms started to show. Needless to say...I have missed an overabundance amount of work. After looking over the past 4 years and combining the weeks on end that POTS can put me out of commission for, I average missing one day a week either for passing out or other symptoms.

It has recently come to my attention that my job may be in jeopardy. This worries me because I do not understand how I will find another job that will accept the amount of time I just can not be there.

What do you all do? Is disability an option for POTS? If so, who do I talk to about it without them looking me as if I am someone who just does not want to work?

Please Help!

[Merrill]

Oooh, that sounds hard! I wish I could offer some advice there about SSDI; this is a topic I too am very much interested in. (I want to make this recommendation to my brother, who is sick right now.) I'm hoping people will weigh in soon on this important issue.

You might try also posting your note on the NDRF discussion forum; I think there are some on that board who have also faced this dilemma.

good luck!

[denabob]

I have been approved SSDI and the requirements state that if you are unable to work three or more days a month that it is unsatisfactory attendance. Good news? Maybe....It is a LONG drawn out process and hard to make it without pay! I fought for 13 months -2 denials and a lawyer later I'm approved! Start with getting a copy of your work attendance and all medical records you can! With SSDI you must be off work for 5 months before they pay anything now depending on your other income you may be able to get SSI until SSDI would kick in. I'm sorry I dont have much good news but you really HAVE to list EVERY thing that is wrong with you no matter how remote! My doctor said to make sure that you (me at the time) mention specifically the chronic fatigue symptom that occompanies this illness ,also has anyone diagnosed NCS? Do you pass out? SSDI recognizes NCS but not POTS on it's own ( which is the reason for lawyers) I have both ..I'm thirty and otherwise "healthy" How ironic is that ? to be called "healthy"

Details as small as the amount of water we have to intake a day -which comes with increased bathroom breaks and the number of times a day when we need to raise our feet and rest - carries alot of weight with their doctors.

Good Luck...If I can answer any more questions let me know!

Deanna

[divine spark]

Hi,

The following group is invaluable in helping one understand the process for applying for SSDI, SSI, ERISA and non-ERISA LTD and it includes links to information on the Canadian Pension.

It also helps one get through the review processes that follow after approval.

http://groups.yahoo.com/group/Disinissues/

Disinissues has expert advisors on board to answer questions, as well as patients who share their experiences.

[Dawg Tired]

I worked for a wonderful company; they placed me on intermittent medical leave when it became apparent I could not work full-time and they were wonderful about letting me go lie down and put my feet up whenever I needed to. But the day came when I could not sit upright for more than 20 minutes at a time and I told my boss I think this is my last day. She called my husband to come get me and she walked me out to the car to make sure I made it ok. That was the last day I worked. I applied the next week for SSDI and it took them a year to do an initial denial. Now I have a lawyer and it will probably be around the 2-year mark before my case comes up for a hearing.

In the meantime, I have a sister who has been kind enough to pay our rent for several months, and our church has been very helpful. Here in Missouri, we qualify for food stamps and Medicaid. Our landlord has been kind enough to sell us a house we can pay off in five years - at payments that are much less than rent! He knows that several people from our church will help us do the fixing.

My husband had a head injury 14 years ago and at the time his family simply refused to let him consider SSDI. Then he became functional enough to work for a few years. I have been supporting both of us since we have been married. Now the problem with him is that since the accident was more than 1 year ago the government can't understand why he hasn't applied before. We had a similar problem with the state when we applied for Medicaid. I was accepted immediately; he was turned down. When we appealed his the judge at that hearing understood immediately and they backdated his Medicaid.

[briarrose]

I know that you should seek counsel from a lawyer that specializes in these sorts of things.

I saw one a year ago and she said that POTS is recognized as a disability. That I could legally miss up to at least 6 months, might have been longer (would have to check my notes) without them being able to fire me. As long as I had turned in my paper work to my employer stating my health problems.

So I went to work and got the forms of the intranet and my doctor filled them right out and sent them in. He explained in several paragraphs that I might have to take intermittent days off do to my symptoms just appearing at any time. They can?t legally touch me.

So my advice is to see a lawyer and know your rights always! Because your employer is the first one to pull the wool over your eyes!

Steph

[MightyMouse]

If you are approaching the point where you think you will not be able to work, I agree that you should get some professional assistance to help ensure that you get the benefits you'll need.

As for working, I can only answer your question about how I work to say "I just do." Some days are awful. Some days I don't make it and have to go home. Some days I call out sick because I just can't upright long enough. And most days, I plug along. I think that working with kids helps too--I get distracted from my own problems and very focused. I have had near-faints at work... but so far, no full-out loss of conciousness. I have to say that I'm thankful for the fact that my body gives me enough warning signals to get closer to the floor before I hit the deck without my approval.

the only things that help me stay working are: keeping to a good sleep schedule, keeping to a good schedule of meals, and arranging my schedule so as to try to mix the more physical stuff with the sedentary stuff. Doesn't always work--but I try.

Nina

[briarrose]

doh

Didn't answer the first question. How do you do it?

Well there have been times when I've barely managed. I've gone to work at times feeling like I was going to die and so weak that I could barely manage to sit in my chair, let alone think. There are other days I've had to call in sick and stay home in bed.

The only reason I haven't quit is because I have to support my family, I don't have a choice. I must push on and endure.

The treatments that they've been doing for the past few months are starting to help and it's easier now than it was a year ago. I actually have felt pretty good this past week, at times almost normal and happy/healthy.

Steph

[mome22]

Deanna,

My now 13 yo daughter has NCS. She has passed out in the past but since getting the Dx and knowing when its coming we can kind of "head it off". She missed alot of school this year due to the symptoms. I didnt apply for SSI for her, my son has it for asthma, IgG deficiency,etc. He has many Dx. I dont think both kids can get it, although it would be great insurance wise. I had to apply for SSI for my son last year, it only took 4 months for the approval which is pretty good from what I heard.

[goldicedance]

One suggestion about working is to see if you can work at home (i.e., telecomute) a couple of days a week. That way you can take rest periods if you need and avoid the hassle of commuting.

Moreover, I really think that you get even more deconditioned by lying around. If I had my druthers, I would probably be resting much more in bed. I am afraid that if I stop working I might deteriorate further.

Right now, I keep plugging along. Eventually old POTS roars its ugly head and forces me to stay home or worse to be hospitalized.There are times when my house is a clutter and my husband does the cooking and shopping. When I come home from work, it is usually just dinner and go lie down. My ankles swell terribly when I am up all day so I need to elevate my legs.

Anyway, keep up the best that you can. If you need to stop working, there is nothing to be ashamed about. You gave it your best try!

[Merrill]

I can't say exactly why I'm writing this at the end of this post chain... but something sprang to mind as a bit of advice about how to just make do ... I've only recently discovered Peapod (grocery delivery service) -- It's fantastic... and what a relief not to have to walk the aisles, stand in line, and carry heavy groceries inside! Check it out, peapod.com, to see if they operate in your area.

Also, Mightymouse, are you a high school English teacher? Just a guess... and I've been curious.

m

[MightyMouse]

Hi Merrill,

I work a teacher's schedule and have the same contract as a teacher, but I'm actually behavior analyst--for the first 18 years of my career, I specialized in only autism and related disorders--and I worked in the nonprofit sector and private schools...and a few years at Rutgers Graduate School of Applied and Professional Psychology. Currenlty, I serve the public schools in PA and see a range of students--some with special needs and some without any diagnosis. The company I work for has contracted me out to 3 different public school districts and one special ed district--I think it's about 50 school, pre-k to 12th, in all.

My Ph.D. program is in two departments: Educational Psychology and Special Education. However, my degree also crosses into clinical and experimental psychology--and when I'm done, I will qualify for full board certification instead of an associate cert that I currently hold. Hope that doesn't sound TOO boring!

I'm guessing you thought "English Teacher" because I love words--that comes from my mom, a writer by profession. I love to pick the exact word that fits...why say "small" when you mean "miniscule"? Well, that, and my graduate program keeps my writing skills up to speed! You ALL should be happy that I don't subject you to my boring technical papers in APA style. YUCK!

Nina

Edited April 3, 2004 by MightyMouse

[Jackie]

How I work is basically I believe because I work from home as a medical transcriptionist. This has many advantages, but I also agree it has disadvantages...namely, I'm on my own making my own schedule which is really great to think about but quite easy to get off schedule with eating at regular times, going to bed at a set time, waking up at a set time...I think overall a schedule helps people function and feel better and I haven't been able to be disciplined enough yet working from home for the past 2 years to actually stick with one. I wonder sometimes if it did contribute to my POTS flare last summer (since I was working from home for about 1 year prior to it hitting but was aware of feeling worse and worse over time before IT hit).

Anyway, that is how I do it. I figure if I can't drag myself to my desk and prop myself up if I have to and type something/anything to make money I don't really know what life I'd have...we certainly can't afford for me to not work and even though keeping house and running errands and laundry and all the mundane things that must be done each day is a full-time job in and of itself, I just feel like I would lose something of myself if I didn't have any kind of job to apply myself to. Maybe if I felt healthy and good and could afford not to work it wouldn't matter as much (I'd fill my time with many great things I'm sure probably) but I think right now for me to not try would only give me more time to sit around and feel sorry for myself which I only do 1/2 the time right now so it wouldn't be a good thing.

There is no shame if you cannot work. Many people with disabilities cannot work and there should be no guilt felt by you if you cannot. I know there is a thing called family leave act that can help you in a situation like this depending on the size of the company where you work (it may differ by state too, but I think it also hinges on the size of the company or something too). Anyway, I used to work at Medical College of Ohio myself 2 years ago and they are a union hospital and also a state facility so they adhered to the family leave act. I had 1 in place for a day or 2 off each month for menstrual issues if you can believe that but it is true and they could not write me up or anything for being absent. It is protection for people with chronic illnesses. Looking back, I think my menstrual problems were partially due to POTS but I didn't know that then.

Anyway, good luck either way. You have to look out for yourself and get information to protect you on your job and/or look into disability if you have to. Sometimes there are free legal clinics that could maybe help answer some questions too.

[Ling]

99 Percent of the time I have no idea how I make it through the day and less alone how I got out the bed the morning. All I can tell you is to fight it with all you have. I always say I am the boss of my body and not my body. Doesn't always work and I end up laying on the floor wishing I could control all this rubbish in my life. I have been advised over and over again not to STOP and give into the Pots. I have been told I will get worst if I relax. So no matter how sick I feel 9 out of 10 times I go to work. I am learning to make my own decisions. I have been so disappointed by doctors in my life. I could have bought expensive car cash with all my doctors’ bills already. And for what, I truly wonder if these doctors are coming from the same Universities. I can’t believe it with all the theories they have. Which don’t work, as we all know. Do you know how many times I have heard a doctor say, "I don’t know what to do anymore".

What gets me to work in the mornings? I have a strict husband how does not actually understand and a wonderful dog. I have mentioned her before and know she is my best medication EVER.

Just fight it and don’t give up! I am making the decisions in my life now and doctoring myself. I know what works and does not work,(nearly 10 years experience). GOOD LUCK AND DONT GIVE UP. DONT!