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#240036 - 09/05/12 02:27 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
iviary Offline
Registered Visitor

Registered: 11/29/10
Posts: 2008
Loc: North Texas
I'm a photographer. I do product photography for a national retailer 4 days a week, and portrait and wedding photography on nights and weekends. I'm also finishing up my bachelor's degree, 6 credit hours per semester. Weddings, long on-location product shoots, and long hours editing on the computer are the most challenging portions of my job. I don't provide wedding coverage for more than 8 hours, because those 8 hours of hauling heavy gear around my neck, kneeling, crouching, and other acrobatics always just about do me in. While my toes are rarely my worst area, they do always swell after a wedding of 6+ hours. Adrenaline carries me through the wedding itself (though less so now than when I was less experienced), but as soon as I get to my car, it hits me like a freight train. I LOVE shooting weddings, but I predict unless I experience remission, someday I'll have to cut out that portion of my business. frown
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Mary, 25, happily married pro photographer, momma to 2 great danes.
Dx: Psoriatic Arthritis, Fibromyalgia, Psoriasis, Sjogren's, IBS, Hiatal Hernia, & possible Endometriosis.
Meds: Stelara, Methotrexate, Relafen, Omeprazole, Lyrica, Tizanidine, Voltaren Gel, Tramadol

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#240037 - 09/05/12 03:22 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Shirley Offline
Registered Visitor

Registered: 10/24/11
Posts: 971
Loc: Wellington, New Zealand
My main job is as a policy analyst, but I also do some sports photography. The main job's a desk job, but I get up a lot to go to the printer, the bathroom, to get a drink, to go to meetings or just to move around, slthough sometimes I forget when I'm engrossed in something and stiffen up. Everything's been checked out ergonomically. I have an ergonomic keyboard as anything else hurts my hands, a good chair, and a package on my computer tells me to take micro pauses.

The biggest problem I've had workwise is with the fatigue when my AS was really bad. I couldn't always make it in every day, and even when I did I just couldn't concentrate, so I wasn't very effective. Before I started humira, my manager was calling meetings with HR to discuss whether I should reduce hours, and my annual performance letter said I was not meeting expectations because of my health. Humira has helped alot.

Meetings that go for more than an hour are also a problem. I fidget and sometimes stand up or go out for a bit (depending on the context if I feel I can).

I also work sometimes as a sports photographer in my husband's photography business - for big running races, triathlons, cycle races or track meets where he needs a second photographer. This is high volume photography - we can take a few thousand photos a day. I really like this, but have had to make some adaptations. I can't get into the creative but awkward positions he does and that Mary mentions and can't stand still for long, so I always take a chair and tend to be parked at the finish line of the big races. And I have a monopod to take the pressure off my hands - and my neck as it no longer likes it if the camera's hanging around my neck.









Edited by Shirley (09/05/12 03:27 PM)
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Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.

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#240086 - 09/06/12 08:33 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
lauralynn Offline
Registered Visitor

Registered: 10/31/10
Posts: 32
Loc: MI
I changed from my last job during a flare. I was in a patients home, getting them admitted for home care and dropped a paper on the floor. I hesitated for just a minute, to figure out how to maneuver myself off her deep couch and get to a position to pick up the paper. While I hesitated she bent over, picked it up and handed it to me... it was a paper for need for physical therapy... tee hee.

So, I changed some meds, and have done some therapy, etc. and now I can pick up a paper off the floor before the average 80yr old. (i'm 42 so thats a good thing)
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Have a Great Day, unless you have made other plans!!

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#240530 - 09/15/12 05:55 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
demon510 Offline
Registered Visitor

Registered: 06/28/11
Posts: 13
Loc: Frisco, TX USA
I have not worked in 7 years but before that I was in the Military for 10 years then I was a Network and Systems Manager for 5 years. I miss working, wish I could go back but my pain is bad, cant sit for a long time and cant stand for a long time. I wonder if the VA will pay for a pool for my house?

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#241364 - 10/02/12 06:15 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
aslee9 Offline
Registered Visitor

Registered: 08/28/08
Posts: 2119
Loc: michigan
I work in the public school system as a librarian / media specialist. It is the perfect job for me because I can alternate between working at the desk or getting up and working the book shelves. The brain freezes are a challenge when I'm asked something from a student that I really know, but the fog is in LOL.

I worked in an elementary classroom for about 6 years before doing this and know for a fact that I wouldn't be able to do it again. Too much leaning over desks and bending to tie shoes, help with coats, etc...

I know for a fact I couldn't work at a job that required 15 minutes or more standing in place or if I had to sit at a desk for an extended period of time without getting up and stretching.

I also have a book/supply room off the library office that I can hide in and do my contortions / stretching to get the kinks out when needed.
_________________________
Ann
HLAB27+
62 years old flexeril, tramadol, tramadol er, percocet, lidoderm patch, flector patch, voltaren gel + other meds for other conditions + lots of vitamins


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#246045 - 12/31/12 12:26 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
greenman145 Offline
Registered Visitor

Registered: 09/08/06
Posts: 2
Loc: San Antonio, TX
I work as a warehouseman lifting 10-50 pound boxes 4-5 hours. Rest of the time is spent on a stand-up forklift, restocking. Hurts to stand too long, sit too long, lift the boxes, look up too long driving the forklift, etc. Same thing everyone else has.

Pros: I guess it keeps me moving and flexible.

Cons: I'm always in pain and if this disease which causes fatigue wasn't enough, lets throw some heavy boxes at it. Half the time is spent in a 36 degree cooler as well, so wintertime here in Texas is year-round for me....YEA!
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Odes, 43, diagnosed with AS 8/06 and stopped treatment after a few months. Re-diagnosed 11/12 with AS. Lived with it for over 25 years. Currently taking Meloxicam 15mg and Tramadol 50mg as needed. Lower spine fused/bamboo spine along with the sacroiliac joints.

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#246126 - 01/02/13 12:41 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Patricia Offline
Registered Visitor

Registered: 12/28/12
Posts: 12
Loc: Canada
I'm a medical student, with 2 years of school left to go. My "job" ranges in activities between 2-3 hours max of sitting in a lecture, sometimes without a break which is one of the worst because my back will get very sore and I can't do anything but shift positions in the chair (and very uncomfortable, tiny, chairs that we have in most of the lecture rooms at that). Thankfully that's the most amount of time spent in lectures per day. Then there's the 2-3 max hours of patient interaction and hospital rounds which isn't too bad because we have a lot more freedom to alternate between standing, sitting, walking around etc. And lastly the studying at home which I break up throughout the day to not only make it easier on my back but also because I have 2 young kids that I want to spend as much time with as possible and a house to help maintain lol. I find that about an hour of studying in the morning, and one at night with periodic walking around breaks works pretty good for me. I think my major "job" issue is the fact that I'm currently not taking anything more than diclofenac and my rheumatologist in Canada wants to put me on a biologic since the NSAIDS haven't proved effective, but I am in school in Romania where the biologics are not yet used (nor do the doctors have experience with them to be able to monitor me on them) and so I have to either find a way to finish the next 2 years without the meds or drop out of school and give up my "job". I'm taking it a day at a time for now and hoping I will keep this disease at bay for the next two years.


Edited by Patricia (01/02/13 12:42 AM)
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27 year old mother to 2, wife and medical student.
Dx: AS in Oct. 2012, enthesitis and peripheral arthritis.
Pursuer of baking, travelling, coffee and wine drinking, chasing dreams and moments that matter.
Also part-time amateur blogger at http://artisanmom.afiadesign.com/

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#246444 - 01/07/13 04:01 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
bukami Offline
Registered Visitor

Registered: 05/03/12
Posts: 74
I'm in graduate school with (hopefully) only 1.5 years left. I don't really take classes anymore, but 3 hour seminars were tough to get through, especially before I started on medication. Some semesters I teach undergraduate classes. Teaching is draining, but it also gives me a chance to sit or stand as I need that day. But it sure is hard to be "on" and energetic while giving long lectures in pain. I am grateful that I can work on my dissertation from home if I'm having a bad day, and can schedule my own hours, and take off for doctor appts whenever I need.

On the other hand, academia is incredibly stressful, and involves lots of long hours sitting and typing. The pressure to publish and get grants is strong, and its hard to maintain that productivity through bouts of irits, fatigue, and spondypain that makes it hard to sit. I'll start looking for positions as a professor next year, and I'm torn between the flexibility of managing my illness in academia, and the lifestyle required to be successful in that field at the detriment to my health.
_________________________
Kat, 28, DX 2012

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#246458 - 01/07/13 06:13 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Ween Offline
Registered Visitor

Registered: 12/25/12
Posts: 17
Loc: Virginia
I am an Executive Director for Women's Health, Obstetrics, and pediatric services in a 6 hospital system. I am new to the role (20 Months) after being in a similar role for 11 years. This is a very stressful and challenging role. Keeping physicians, staff, and patients happy is a tough job. I hadn't had a bout with uveitis in a few years, but it returned within 6 months of starting this position along with exhaustion, shortness of breath, and joint pains. I am very concerned about keeping up with the pace. My co-workers have noticed a change in me and I really don't want to bring it up and take the chance of having future opportunities affected by my diagnosis.
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Diagnosed December 2012. 48 y/o female. + HLAB27, AS, recurrent uveitis. Family history of RA. Currently on Cellcept, Flexeril, Meloxicam; starting on Remicade

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#247260 - 01/19/13 05:09 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
hanoverbill Offline
Registered Visitor

Registered: 02/08/11
Posts: 22
I install residential heating and cooling equipment. The job is part time 20-40 hrs a week. I do not do any ladder or rooftop work anymore as my neck is completely fused. This can sometimes be quite physically demanding job but my employer is full aware of my condition and is very accomidating and would never ask me to do anything I am uncomfortabe with. I also look after my 93 year old father who is in a assisted living facility. sometimes I go to bed at 7 pm because im very tired and other times I wake up at 3:30 am because my back hurts. We all have to take care of ourselves anyway we can. I miss the income and benefits I had with full time work but am glad to not be dependant on others to support me. Health insurance with our condition and my age is my biggest concern as it is my largest expense and only costs more every year. Having AS is still better than pushing daiseys though!! Bill
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Bill age 51 neck fusion, presently taking remicade

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