I am a full time grandmother..hehe..@ 57 I get take care of my grandkids a couple days a week, and with my kids busy with work, returning to school, and all of their kids activities I keep busy going to church, ballet, (granddaughter in ballet) various school functions, when possible..

But I have been a full time patient this past 18 months...so I am trying to stay out of the hospital most of all. Spent a total of 12 weeks in hospitals in last 18 months, so trying to stay healthy..Between doctors visits & home health care and the TPN..Then then you figure in getting washed & dressed...That's just about all of my energy right there.

But it is starting to get a little better. I am able to go to a store now & then..

Good luck & many prayers Northernelf..
Cheryl

I am a student, and work with cardiopulmonary patients in the hospital several days a week. I take care of a lot of kiddos, and mostly deal with life support patients. Very active, and full of germs. I also do youth advocacy on the side, and travel to speak with various organizations in regards to that. Probably not the ideal environment for someone that's missing their immune system, but I LOVE what I am doing, and I believe that having a job I am passionate about is extremely important and worth weighing the risks. If in the future I am sacrificing too much with my health to work in this field, I will have to be accepting of making changes. I believe it is an individual thing with how much we can tolerate while keeping up with our health. Best of luck in your decision!

Hey Northernelf,

Prior to getting sick, I was a social worker dealing primarily with victims of Domestic Violence...Between CVID, Sjogren's, Hyper-Somnia, and Fibro, I am NOT a reliable employee at all! I can't even predict when I will fall asleep lol...
So right now I volunteer with RAINN the first legitimate on-line 'hotline' for victims of domestic, physical and sexual abuse. I've been a certified crisis counselor for years, so I'm glad that even if I can only manage 2 hours a week, I still get the privilege of contributing.
Right now RAINN has an app for female soldiers who have been assaulted so they can get confidential services be they in Afghanistan or Stateside...it is very cool, and forward thinking. I love keeping my toes in the social work pool...though I think you all are the first people I have told that I have been doing this since shortly after I got sick...dunno why.

If I get strong enough to work again, I want to shift the population I work with to teenagers...I think they are a very neglected portion of the population, and they are just so cool and goofy at the same time lol I love how they are just starting to develop their own political, religious, moral beliefs...

OK, went on a little too long there!

Here's the link to RAINN if you want to check it out or know someone who could use it

http://www.rainn.org/

:) LuLu

I am the director of a small nonprofit. We are a national technical assistance provider and help tribes develop their domestic violence and sexual assault responses. I work full time but am able to work form home sometimes when I need too. I encourage staff to telecommute and do what they can to manage their lives and that creates an environment that supports me when I am sick. I travel once or twice a month and find that I get a little nervous moving through airports. I have lots of sanitation rituals doing that and in hotels as well. Its helped me lots cause I am managing infections better. I also make sure I get lots of rest when I am out on travel *no long days for me) and usually take a day off when I get home to rest up from the travel. I am very passionate about my work. I had considered leaving this kind of work a few years ago but instead I changed my work habits a bit to make it more possible for me to keep on doing what I am doing.

Hey Northernelf,

Just a few thoughts...clearly you are into fitness and I would guess a healthy lifestyle. I don't know your educational background or if you would need to go back and takes some classes, but a few ideas popped in my head.....
At one point in my life I was part of a medically managed weight loss program. Part of that involved working one on one with an Exercise Physiologist- she did not act as a fitness instructor, but did take measurements for BMI, gave guidance to each patient individually about when to start exercise,when to increase, etc..and she did talks in the cognitive therapy portion of the program as well...so, not physically stressful
Also, I thought of Physical therapist, and maybe a Dietitian or Nutritionist depending how into eating certain foods you are into.

Just some thoughts...not like I can decide your career path or anything lol
Best, LuL :)

Thanks for the ideas ! I may take my personal trainer...am just about to start a required strength training course for it. Of course, that would still mean working with people. Maybe I should just retire !!!!

My educational background is a degree in Animal Science (agriculture)...hehe...haven't worked in the field since having 2 of my 3 kids. Not much contracting available anymore & don't want full time work...so I'm done with that.

Northernelf,

I am so happy that you asked this question! I am very curious about careers being affected by CVID. For you, I can imagine that the humidity of the pool and the constant in and out of the water would probably be quite tough on your system, especially when watching for cleanliness in a public pool setting... Which must be tough! Then add the fitness classes and I think anyone would be starting to get run down... And you have kids! Go you!!

I was a stage actor and singer, toured in shows and did voice-over work while volunteering with at-risk youth and arts exposure workshops. I understand the disparity between wanting/ needing your body to get you through your workday and physically not being able to do it (stamina, infection, other immune-related issues). Unfortunately, my first IVIG triggered aseptic meningitis and terrible migraines, and I tried to tour with a musical a month later, and wound up even sicker than had I stayed home. it took me another 7 months to get over pushing my body before it was ready, for a 2 month paycheck. It made me realize that pushing my body to perform (sing, dance and act) was pretty much impossible because I was so sick. I gave up some contracts, and then found I needed to figure out what else to do. A career transition book for women (http://www.timeschange.org/services/workbook/toc1.html) helped me, and it was so frustrating and extremely stressful going through a terrible health patch WHILE changing careers. But the light came at the end of the tunnel: I wound up deciding that I want to continue to help at-risk youth through the arts: I am now going back to school for drama therapy in the fall. I like that many people on this site are helping others-- it seems to be a trend! I am finding my few prereq classes give me less stress and less responsibility while offering me more structure and consistency. I can't work beyond school and my stamina is still really weak, but knowing that I won't have to pick up and leave every few weeks is comforting. I guess my advice in all of this is do something that for you is tied to your strengths and history, is low-or controllable in terms of stress and can fluctuate according to your schedule.

It sounds like a lot of us here were/ are very passionate about our careers and loved the lines of work we chose, so it's no wonder it/s like we go through a mini mid-life crisis when we have to scale it back or find a different way of expressing the things we loved best about our jobs through new ways that don't increase our risk of infection, or cause us such severe fatigue that we cannot function.
While I still hold out hope that at some point, I will be able to work again or even increase my volunteer hours, I try not to see this as a character flaw...and that is hard because everything in society tells me it is lol

Also, looking at those around me, I realize CVID has taught me one (well several) heck of a life lesson- Quit Stressing!

I see friends and family rushing all day trying to cram all kinds if things into one day, then go to jobs they are not happy with, or wish they could retire, with and at the end of they day, they are worn to the bone.,..what a toll that takes on the body-even a healthy one!

So, if I am able to work more in the future, I am definitely taking a class in time management...I don't want to lose what I've learned-patience, the ability to sit with myself, and the joy of watching the sun as it comes up and watching it as it sets.

OK, that went a little off topic, but I have really enjoyed learning about everyone's careers and how you all plan to find work-arounds...thanks for sharing :)