Working

[britishangel6]

For those of you who can work...what do you do? I'm an RN but can't work in the hospital (or on my feet) any more. I'm also avoiding driving so home health isn't an option. What field is everyone working in???

[DIXZELAND]

I work as a medical scheduler. I schedule surgeries and radiology procedures for a hospital. If I weren't able to sit all day I wouldn't have a job. On days that I feel horrible, I go into work because I know that I won't have to stand or walk to do my job. Thank goodness!

[lieze]

I do work a little but it is very difficult.

I have so much anxiety and fear going in that I just feel sick for hours and as if I'm going to come right out of my skin.

It is almost way too much activity being a nurse.

There are so many tasks, so many trips up and down the hall.

I am lucky that with the unit I'm on the med pass is small.

There are only 13 residents on that unit.

I find as the night goes on I feel good and part of it is I don't have that pile of work looking at me that I need to accomplish. As I whittle it away my anxiety lifts.

My heart rates have been high there but I think it's partially anxiety at this point.

The more I relax there the less it seems to be a problem.

My anxiety seems to be a major part of my problem.

It's not something I feel I have controlled at this point and I get so discouraged that I just feel like crying at times.

I seem to not be able to handle any normal stress at all.

It all exhausts me.

It's very difficult.

[Brye]

I was an ER nurse. I tried to return to work but I couldn't get the doctor to write me a work note without the possibility of fainting so the hospital wouldn't take me back. They were even willing to hire me as a chart auditor and it was denied. It was dissapointing. I have 4 kids though so that's a full time job in itself.

Brye

[sj75]

im a nurse but also couldnt get a dr to write a 'well note' so was made redundant on the grounds of ill health. I would love to be able to work from home especially if i could still use some of my medical knowledge but the opportunities just dont seem to be there?

[sj75]

im surprised how many medical professionals seem to end up with pots. Makes me wonder if we are all exposed to something that triggers it?

[dianne.fraser]

I started out as a nurse too, but had moved into health policy (along with many other nurses) well before I got my diagnosis. Every day that I work is hard, even though I work at a desk job and allowances are made for my illness (no flying - it aggravates my symptoms; few meetings - I have panic attacks when I try to speak to crowds, and the anti-anxiety medication dumbs me down so that it is difficult to participate as I need to; leave each year in January and July - my body doesn't cope well with hot or cold weather, so I rest during the worst of it).

I'm planning to apply for a partial invalidity next year in the hope that I can move onto a four-day week without a big financial penalty.

I need to keep working because I will lose my home if I stop - I need to provide for myself. Every day that I work is hard, but its another day that I've paid my mortgage and contributed to my superannuation.

I think there are a lot of health professionals on the forum because a lot of us have needed high levels of health literacy to get a diagnosis - there are people who are less fortunate, who don't have the resources to advocate for themselves or do the problem-solving that our doctors sometimes cannot do, and for whom a diagnosis will never be made.

With best wishes

Dianne

[skiberthoud]

Add me to the list of medical professionals. I'm a physical therapist assistant. I've been working in acute rehab for 12 years, specializing in neuro rehab - go figure! I've only been working per diem since my last daughter was born, but haven't been working at all for the past five months. Hoping to be able to pick up some hours here and there when I'm having good days...we'll see how that goes. I now know that when I do get back to work, I'm going to be able to have a little more empathy for my patients...

[sj75]

I would love to work on my good days but the most difficult thing for me is that things change from hour to hour and i never know until the day that that day is good (if that makes sense-lol).Wish there was something i could do from home.

I worked in telephone triage for 3 years and would love to be able to do that from home but dont think its a possibility.x

[peppermint patty]

I was a first grade teacher. It will be two years in March when I first collapsed in the classroom and this whole thing started. Last year, I attempted to go back to work and I only made it half way through the school year. My body just can't handle it anymore. Now I am stuck at home and wish I were working. Miss it terribly and so sick of this whole thing...sorry to be such a downer.

[lieze]

Hugs everybody.

I know this is very hard and I'm still struggling with whether I should be working at all.

My POTS started right after I contracted chicken pox from a patient.

My first day back to work I had my first episode and went to ER from there. I didn't know what was happening, I imagined a heart attack?

[janiedelite]

I think there are a lot of health professionals on the forum because a lot of us have needed high levels of health literacy to get a diagnosis - there are people who are less fortunate, who don't have the resources to advocate for themselves or do the problem-solving that our doctors sometimes cannot do, and for whom a diagnosis will never be made.

Well put, Dianne. I haven't worked as an RN since May of 2007, initially because of a car accident that required hip surgeries in 6/07 and 1/08. But in 2008 my POTS flared badly, although I'd had symptoms since 2006. My state's board of nursing has forced me into retired status, and will only grant me an unrestricted license after my doc says I'm okay to work and I successfully work a few months of probation. I recently completed a Functional Capacity Eval this summer because I wanted to try to work part-time, but unfortunately my limitations are still too strict to even allow that.

As a side note, being a nurse did help me get a diagnosis because I worked at the hospital with many of the specialists I consulted with so they had a degree of respect for me. However, my main source of help was my primary care doc who only knew me as a patient, and who saw me as a healthy, functional patient who turned very sick.

[MomtoGiuliana]

It's been noted in the past that many DINET members work in the medical (especially nursing) profession. It is interesting. Maybe people with medical degrees and experience are more likely to get diagnosed correctly??

I work in the conservation/planning field.

[songcanary]

I agree with Dianne. Working in the health care field does have its advantages and because of it, I was able to narrow down my diagnosis even though my (now former) brain dead PCP couldn't do it. Three years wasted because of it, GRRRR.

Anyway, I was a medical assistant first, then retired as a veterinary technician after 16 years. Currently I am a self-employed professional pet sitter but haven't worked in ten months. I am just now picking up a tiny bit of work to see how it goes. My clients are heaven-sent, they have been wonderfully understanding and I am very grateful.

Another thought I had is that when I first got diagnosed, my serum and saliva cortisol levels were off the charts, especially at night. I have always worked in a field that is loaded with stress (at least for me) and I just don't handle it well at all. I think that's part of what made me crumble. Because all my life I have had low blood pressure (90/60) but it never caused symptoms like I have now. It really hit me in the face at how damaging high cortisol levels could be. So I am decompressing and working hard on regulating my response to stress. It's a tall order for someone like me but now I realize just how critically important it is. I will be interested to see what my recheck levels are; hopefully a little improved by now

[Mito Momma]

Wow. I am so surprised how many people are nurses and/or in the medical field. That's very interesting. I am (was) an ER nurse. I have not worked as one, though, since Dec. 1st of 2009. I am currently working PRN as a monitor tech. Of course, I only work 2-3 shifts a month and I am getting paid monitor tech wages, not nursing wages. Even those 2-3 shifts are extremely tough for me. They are still 12 hour shifts. I am usually knocked down for two days after I work one shift.

I also think that my nursing knowledge and prior association with the docs I saw helped me get a diagnosis quicker. My PCP is completely clueless. A cardiologist I worked with really advocated for me to help me figure out what was wrong. He knew me fairly well as a nurse and knew that I wasn't the same person anymore.

It's interesting that I came across this thread today. I actually had something happen at work yesterday that really upset me. You can read about it on my blog if you want... http://1fastnurse.blogspot.com/

I, too, wish I could use my RN degree (I even have a Bachelor's) for something. If anyone ever figures out something to do from home, let me know. I am waiting until after my muscle biopsy to file for ssdi.

[potsgirl]

I went back to school in my late thirties to get a grad degree in anthropology. 6 years ago I moved to northern Arizona to be a tribe's archaeologist, walking for miles in the heat and going down into the Grand Canyon to record archaeological sites. I loved it! Approximately one year later I got sick and needed a desk job. I moved to Tucson, worked for the county as an archaeologist for county projects with hardly any field work. Again, one year later I got sicker and had to quit my job completely. I HATE not being able to work and be active.

I try to stay positive that one day I will work in my field again, with a desk job or from home. I would be happy right now just being able to commit to a volunteering position in one of my areas of interest. It's so difficult when you have no idea how you'll feel from one day to the next.

Hang in there, everybody. Who knows, we may get back to work after all!

[Guest tearose]

After getting POTS/Dysautonomia I was unable to work in my field. I have a master's degree. Desperate to use ANY skiils I had I tried various jobs at a great cut in pay just to feel like a contributing member of society!!! I did various things and even attempted to go back to school! I kept relapsing until I could do no more. Not even the dishes or laundry!

Not only did changing my field not work out but I lost the "points" one earns when paying into ssdi and so I actually was penalized for trying to work!!!

I don't have consistent body functions so I had to stop pushing myself so hard. My best now is to manage my body and then, if ever possible, I try to volunteer on an "as I am able basis".

I still feel compelled to be of service to others because I am still alive!

The important thing for me, which I struggle with daily, after taking of my physical daily needs, is to keep a balance between a little homecare, and a little volunteering.

[Mito Momma]

Tearose - I have been trying to work myself even though it's at almost half my previous pay. Can you please explain what you were talking about regarding the "points" and ssdi? I am going to apply for ssdi but I wanted to wait until all of my tests are complete. That way, if I am diagnosed with something in addition to pots, I can add it to my application.

[Guest tearose]

I don't know the formula but I suppose someone does...

There is some type of formula period where you had to have worked a certain number of hours during that time.

If you wait too long you may miss the chance to apply for benefits.

I suggest you get correct information. It has been awhile since I went through the ordeal.

[sj75]

its the same in the uk, before my first pots episode i had worked solidly so had paid enough contribution but now if i try and work and dont succeed or have a flare up i will have lost my benefit and probably not be able to get it back. Rock and a hard place.x

[sue1234]

I couldn't vote in the poll, because once I said "no" for able to work, I couldn't answer the next two questions. And, because of that, it wouldn't register my answer of not working. To get an accurate poll, you might have to make it so even the "no" workers can answer all questions.

This is interesting. I was an RN also, but only have one year under my belt. I always hate the fact that I missed out on my career. But, I still use the knowledge I gained from getting my degree, so that helps!

And, I am like y'all. I wish there was a job that could use my brain from home, as I can't drive anywhere.

[sue1234]

1Fastnurse--have you been checked for hyperparathyroid? Besides all the usual symptoms of weakness, fatigue, and constipation, two things stand out when I read your blog: the contant headache and you talking about how "cranky" you had been. Those are two notorious signs for hyperparathyroidism. If you haven't yet, have your PTH, ionized calcium, and calcium checked. It wouldn't hurt to rule it out.

[Tia Koul]

Hi Guys!

I know I have been sick since I was small, so I always struggled with school/work. I couldn't work full time for more than 2-3 months in a row from about 18yrs old. I barely graduated HS. (I am 41 now!) I couldn't hold down a 'real' job, nor was even thinking about a career as an option at any point. The exhaustion, I feel primarily from a sleep disorder, prevented my brain from really functioning, planning, desiring, etc. At about 37 after the Mayo, I got on Mestinon, and I was able to make some strides. Along with sleep meds and a beta blocker. I opened a business at that point, 3 blocks from my home that I could walk to, and kept late retail hours so I could sleep in. It worked for the most part. But after I lost my huge adrenaline rush with opening up, I started to fade out slowly and work less hours. And now, after I lost my biz (thank you recession and corrupt landlords) I am once again paralyzed so to speak. And stopped taking the mestinon temporarily, because I was vomiting so much. But going off it did not abate those symptoms, and it is hard to get back on. I wish i could go on disability, but payments would only be around $240/week. Since I was never really able to work, that's all it would be. Periods of stress render me incapacitated entirely. I cannot do anything. I keep hearing everyone talk about mcad.... curious about that. I had never heard about this before. Anyhow, I could not answer the poll, because I worked part-time, and even though my dx was about 8/10 yrs ago, I couldn't function from a very young age. Right now, I am too tired and distraught to work. And I cannot think of anything I would rather do less. I need a good year to recover at this point. I always need a long time to recover after big energy output, or stress. I am inconsistent with everything I do, because I lose the energy so quickly. I need a ton of cash, a cozy bed, good TV, and a few boxes of Godiva. Then I'll be good to go! lol. Too bad these are not real options!!

[kayjay]

I was an early childhood teacher. I think I am almost well enough to work part time. I know all day would be too much. I just don't know any teaching positions that are not all day.

[Heiferly]

I was self employed at the crossroads of home healthcare and early intervention (special ed), doing one-on-one therapy with autistic children in home, school, and community-based settings. Social security set the date of my disability to the date of my onset of dysauto ... I barely worked at all after that day (just a few hours spread over a couple of weeks as I rapidly deteriorated). I'm on home healthcare now and have no illusions about work of any kind. It would be a pipe dream just to do housework for myself or shower safely without assistance.

I think the observation that those of us with backgrounds in healthcare (or even science-related degree fields in general) are more likely to have been able to assertively advocate for ourselves and obtain (and comprehend) the information necessary to get a diagnosis is dead-on. My degree is in speech and hearing science, with a firm background in the "hard" sciences from two major research universities. Without my educational background, I'd likely be lost regarding my condition. Without my work experience in home healthcare, I don't know that I would've gotten approved for SSDI the first try around, would've gotten home healthcare myself, etc. It really helps to understand "the system." I imagine there are legions of dysauto folks floating around who either aren't diagnosed or aren't getting any treatment or services to speak of.