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#235625 - 06/27/12 09:14 AM What is your Job? What are the pros/cons with AS?
pilotmike5 Offline
Registered Visitor

Registered: 09/27/03
Posts: 61
Loc: Brooklyn, NY
Tell us about your job and how your Spondylitis affects it. Are there specific obstacles to your success? Are there accomodations that have been made for you? Maybe you were forced to change careers because of your disease, we would all love to hear your story.


Edited by pilotmike5 (06/27/12 09:14 AM)

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#239657 - 08/29/12 06:21 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
pilotmike5 Offline
Registered Visitor

Registered: 09/27/03
Posts: 61
Loc: Brooklyn, NY
Ok, I guess nobody wants to share? Well I have had Spondylitis for several years now. It makes getting to work on time difficult. I sometimes have trouble staying alert. The week after my remicade infusions are always tough. The week before my infusions are always tough. Winters are always a struggle. I would imagine I'm viewed as being slow, uninterested and lazy. The mentality at my job is somewhat militant and many of the things I need help with are viewed as a weakness. I work at a powerplant as a lab technician. There are many ex-Navy guys I work with. It's not too labor intensive but there are times when I feel too sick to be on my feet and too out of it to be working with chemicals. I'm sick but I make an effort to get to work and contribute. Difficulty focusing is probably the 3rd toughest thing to deal with after after pain and fatigue.

I had training to be a pilot. Now it's clearly not a good choice. Too long in a seat hurts. Loss of focus and fatigue is not something you want in a cockpit either. Lots of money went into that and it stung.

Looking for a new career now, I think ideally I'd like flexible hours, a short commute, and good benefits and pay. I have been kicking around the idea of opening my own business. I thought a laundromat would be a good idea. I can open one close to home and being my own boss I understand I'd have to be there more often however, I need not worry about getting suspended and possibly losing my job for being two minutes late. I know bigger risk but bigger reward too.
_________________________
33yo man from Brooklyn, NY
Remicade infusion 6 week intervals
Premature wear to most major joints and entire spine.
Sleep apnea
Fatigue
Anxiety

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#239788 - 08/30/12 08:41 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
Well, I'll reply. I'm a nurse.

I have changed positions a few times over the past 5 years to jobs that fit me better physically. I am actually just returning to work in the morning after being off for three days r/t pain, with a prednisone taper I think i can get back there in the morning.

I am currently working as an MDS nurse for a longterm care home. (Reports and careplanning for others to perform). I'd say that I have freedom to get up and move around thru the day, as I have to collect data from the various units and meet patients for interviews. Some days its easier to sit and do the computer work, others I collect and collect and collect and dread getting back to the office.

Worse than the physical right now is the emotional toll on working. I too have extreme difficulty with getting going in the morning as it takes several hours to loosen up and mentally clear the fog. It's also difficult to finally shut down at night when at home and finally feel clear and calm, so I self-sabatoge the whole get there on time thing.

My coworkers and I do not share personal stuff, I have mention some about illness, but a nurse is sympathetic to patients and not so to coworkers. My direct boss seems to be easy going but others seem to think that they need to have input. My direct boss has said I can flex hours, and others say they want 8-430. Confusing messages.

I guess my biggest strength at work is my attitude, I try to be greatful and happy and positive and do what I can.

Treatments: I've been on methotrexate and plaquenil for 2+ years with folic acid and NSAIDS, now on relafen. I take skelaxin in the morning and at night. I take one norco in the morning and at night and have one with me for noon if I need it, or 1/2. I take cymbalta. I take ENBREL and just last week its been increased to 2xweek. I also am on day 2 of a prednisone taper d/t pain in right leg and couldn't sit or stand.

So, hopefully others will respond.




_________________________
Have a Great Day, unless you have made other plans!!

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#240007 - 09/04/12 06:50 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Philip Offline
Registered Visitor

Registered: 09/04/12
Posts: 3
Loc: Pennsylvania
Hello all. I am career firefighter/emt. Diagnosed last year with AS. Up to that point, I attributed the pain to the hazards of work.

This is a career that should not be considered by someone who is afflicted by AS. The day-to-day activities are bad enough, add into this an 8 hour fire, scaling ladders several times up to 105 feet, hot, cold, wet, etc. you get the point. The add the weight one has to add for just about every call and that can vary from 75 to 200 pounds.

I am on sulfasalazine but am not pleased with the results thus far. I am prescribed tramadol, but don't take it before or during work. The state I live does not regulate this as a controlled substance so no worries there, but I feel nervous knowing this med may interfere with judgement and reaction times.

I also have the luxury of having Crohns disease which is icing on the cake so to speak. I am seriously looking for a telecommute job or work from entirely. This year so far I have missed 15 days of work from these lovely, lifelong companions.

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#240011 - 09/04/12 08:21 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
AchingComic Offline
Registered Visitor

Registered: 01/10/12
Posts: 6
Loc: New Jersey
I'm a comic. The biggest con with AS is the travel. Sitting in a car or plane for hours always makes my back and legs hurt.
_________________________
Best,
Aching Comic

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#240016 - 09/04/12 09:02 PM Re: What is your Job? What are the pros/cons with AS? [Re: AchingComic]
winelover Offline
Registered Visitor

Registered: 12/29/08
Posts: 2183
Loc: Perth, Western Australia
Originally Posted By: AchingComic
I'm a comic.........


hey, I hope you can incorporate AS into some of your material............ a guy with AS walks into a bar............. the barman says???????? laugh

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#240018 - 09/04/12 09:17 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Tulipan Offline
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Registered: 04/26/02
Posts: 106
Loc: Longmont, CO, USA
I agree--sitting for a long time is terrible for the body. I'm a court interpreter and translator, and I sit for long periods. I get so stiff! I also have to stand for fairly long periods, which is also painful. If I have to interpret for an extended time (like in a trial), my throat gets sore (maybe because of arthritis in the jaws?). On bad days, I lie down on my office floor at lunch time, let my back relax, and do stretching exercises. I don't take any meds during the day for pain because I have to be totally alert for my job. But work is good medicine for me because it takes my mind off my aching body and gets me involved with other people. My superiors have been great when I had to take time off for joint replacement surgeries. I consider myself lucky to have the job I do.

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#240027 - 09/05/12 08:16 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
WhiteCell Offline
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Registered: 05/31/10
Posts: 1259
I work 2-3 per week in an ICU as an R.N. 12 hour days. I walk about 4 miles each day at work doing my job. My feet and my neck are my sore points. In the morning if I am due for a long shift, I apply Aspercreme to my toes and that appears to help. If the discomfort leads to pain I will take 3 Aleve and/or 2 long acting Tylenol.

Prior to Remicade I just dealt with it the best I could. I used to fly patients but cramped quarters don't really afford me to much room to move so I stopped doing that.

On my days off, I hot tub go to the gym and weight train and stretch. After two years with a professional trainer my endurance is steady and not declining with age. Iritis has been a harsh thing for me and I have had two surgeries requiring 2 months off from work in 2006 and 2008. Hopefully that is in the past. I keep myself motivated by hating the diseases which we attempt to conquer and celebrate each victory small and large.

I do feel more tired these days and I work to get at least 7 hours of sleep per night. I feel fortunate to be able to be working in a career that I enjoy.
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

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#240031 - 09/05/12 01:14 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
I have a feeling that anybody in a physical job like floor nursing or EMT, has some aches and pains after a long/tough workday! Especially as we are getting older (and NO WC, I am not saying you are old! lol)

I'm also a desk jockey - in the quality improvement department of a large pediatric hospital. I spend my workday sitting at my desk and attending meetings where I sit at a table, usually smile I only work .8 FTE (so I can be home with my kids after school 3-4 days/week) - so I have 3-4 6 hour workdays every week. Working a reduced schedule really helps, if one can manage it financially.

Philip, if your pain is axial, sulfasalazine is a poor choice from your rheumy. You should be trying different NSAIDs... if none of them pan out you should be offered an anti-TNF. I hope you see some improvement soon!

Seems that one point is shared by all, regardless of what sort of work we do. If the disease is not under control, we have pain. It looks to me like the type of job (sitting/standing/walking etc.) doesn't matter nearly as much as having an arsenal of tools to help deal with the disease and its symptoms.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#240032 - 09/05/12 01:30 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1259
I think that you're right Jen it's the acute pain that we have to respond to and get under control. The 3 surgeries I have had knocked me down for several weeks at a time. The SVT ablation I was out about a week and the two eye surgeries 3 weeks and 6 weeks. Now that the iritis and ocular pressure are "under control" I am just vigilant with my eye doc appointments and I must take care of myself. Now I am in a .75 position which allows me to work 2 days one week and 3 the next if I can afford it. I should write a song about eyes and toes.
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

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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
_________________________
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)
_________________________
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)
_________________________
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!
_________________________
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)
_________________________
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.
_________________________
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
_________________________
Bill age 51 neck fusion, presently taking remicade

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#252329 - 05/17/13 01:50 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
BeckySue Offline
Registered Visitor

Registered: 04/27/13
Posts: 47
Loc: Georgia
I am a horticulturist doing landscape maintenance and installation work. I have been in the business 20 years, probably all of it with spondylitis, but only diagnosed in my 40's. I am 57 now, and just this year I had to cut back on my workload because it was just too physical for my body, and I was too exhausted after a summer day. My rheumy says that the fact that my job kept my so active and moving all day probably kept my disease progression at bay for a while. Now I cannot do the bending required, and especially having to stay in one bent position for a length of time is too painful. However I have found out how quickly the stiffness arrives after sitting for only 1/2 hour! Guess age and AS have ganged up on me, but I don't regret any of those 20 years outdoors.

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#252616 - 05/26/13 02:38 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Tiamoonpi Offline
Registered Visitor

Registered: 05/24/13
Posts: 3
Loc: Wisconsin
I am a teacher and I currently work with infants and toddlers. I have some really hard days but my AS is relatively well-controlled (until very recently...I'm having more bad days than good at the moment). I do yoga and therapeutic stretches and exercises each day and I think it really helps. I have had trouble over the years with bosses and co-workers (and teachers/professors during HS and college) who just didn't take the time to learn about what I was going through but right now I don't have that problem, which is SO nice. I actually find this sort of active work a bit easier than classroom teaching with older kids. I think it wears me out more but it's easier to do in the moment, if that makes sense. I might start a TNF-blocker soon and I'm worried about the suppressed immune system being around little bitty kiddos. Anyone have any tips or stories relating to teaching while immuno-suppressed?
_________________________
28-year-old female w/ AS (misdianosed as juvenile RA at age 14 and lots of other stuff in between - finally diagnosed Sept. 2010) w/ hip involvement. HLA B27 positive. Taking NSAID (diclofenac) currently - thinking about Enbrel or Humira. Gluten-free. Yoga enthusiast.

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#252655 - 05/27/13 03:49 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
seekonk Offline
Registered Visitor

Registered: 12/06/10
Posts: 1254
I am a lecturer at a college and have a relatively light workload compared to most jobs, as well as summers and winter vacation off. (The salary isn't great though.) If not for the light workload, I could not have kept the job when I was really bad, before diagnosis - even so a friend who teaches in the same department took over my classes for 6 weeks during my worst flare, when I couldn't even get there (nice of him, but also, I did give him my salary).
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#252664 - 05/27/13 06:11 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
essiep Offline
Registered Visitor

Registered: 05/27/13
Posts: 3
Loc: St Louis, MO
I work at a desk all day doing mortgage processing. I'm one in a sea of cubicles, but no one cares if I get up and move around during the day to loosen up. The biggest challenge for me right now is all the screen time. I'm having eye-related flare ups and the monitors make me nuts. My boss has been really great and gotten me those screen shields that limit the light output and had my cube set up my someone who specializes in ergonomics. I would love one of those treadmill desks but no one in the company has one so I doubt they'd let me be the first.
_________________________
-Sarah-
27 years old, HLA-27+, reynauds & uveitis, pending diagnosis from rheumatologist.
Meds: NSAIDS & prilosec. Alternative therapies.

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#253551 - 06/09/13 05:18 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
Sarah, does anyone in your company have a standing desk? That would at least be a start.
_________________________
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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#253591 - 06/10/13 07:38 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
mont974x4 Offline
Registered Visitor

Registered: 03/11/05
Posts: 2309
Loc: Montana
I am in the process of becoming an insurance agent. I am also an ordained pastor. In both situations I am essentially self-employed as I set my own schedule and work pace. This also means I can homeschool my two younger sons and volunteer around town.
_________________________
Jay

NOTE: If you aint here to help row the boat then you are welcome to walk the plank.

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#253907 - 06/16/13 01:19 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
HolisticHealer Offline
First time visitor

Registered: 06/16/13
Posts: 1
Hello! I was searching the forum to see if anyone has had luck with/recommends using a standing desk setup for desk jobs! I'm a graphic designer and am awful at remembering to get up and stretch!

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#253978 - 06/18/13 12:43 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
My partner has a standard artist's desk at home (maybe 2 feet x 3 feet; flat; legs are adjustable-height.) He keeps his at an angle and pretty high, as he likes to sit on a taller stool type chair (using a footrest) than a normal desk chair. You can probably adjust this type of thing to use while standing. I would think it would be common among designers.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#253979 - 06/18/13 12:51 PM Re: What is your Job? What are the pros/cons with AS? [Re: BeckySue]
CentralGaGal Offline
Registered Visitor

Registered: 04/20/13
Posts: 252
Loc: South Carolina
Originally Posted By: BeckySue
My rheumy says that the fact that my job kept my so active and moving all day probably kept my disease progression at bay for a while. Now I cannot do the bending required, and especially having to stay in one bent position for a length of time is too painful. However I have found out how quickly the stiffness arrives after sitting for only 1/2 hour! Guess age and AS have ganged up on me, but I don't regret any of those 20 years outdoors.

I would have to say as well, when my Type "A" personality slowed down (and I had the neck fusion) is when the AS reared it's head will revenge. Up until mid 2010, I ran wide open all the time just popping meds to curb the moderate pain. When I sat down to ease it and get over the injuries and surgery is when the sky fell for me.

In my job, the last few years there they installed ergonomic desks that were hydraulic and the computer screen was mounted with an arm and fully adjustable. The chairs did not elevate to that height but on days that sitting was a bear, it was a welcome option.

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#254222 - 06/20/13 10:03 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
helenaS Offline
Registered Visitor

Registered: 07/26/12
Posts: 14
Loc: Canada
I work as an MRI and Xray tech. I like the MRI work because I can control if I am sitting or standing easier than with xray. There is more sitting though with the MRI, but if Im not too lazy I can pretty much stand if Im not at the computer. The xray work is brutal. I do not recommend it for people with AS. The constant pulling and pushing of equipment and patients just about kills me. Also I am on my feet all day. My co-workers are amazing though and help me whenever I ask, sometimes without me even asking! I am truly lucky to have such great people to work with. I read this forum thinking about what a good career change might be, because honestly the xray work is so brutal and I don't see myself getting full timeish MRI work any time soon. I wonder if working as a mailman would be good, because I feel the least amount of pain when walking. Wonder how heavy those bags are.

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#254330 - 06/22/13 10:52 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
SniperWolf Offline
First time visitor

Registered: 06/15/13
Posts: 1
Loc: United States
I am a corrections officer . Which as you can probably guess makes this a very challenging situation for me.. Between flare ups and the average wear and tear of everyday encounters has been very tough on me physically as well as mentally. I am not able to function to my full potential and my off time is usually used for recovery. I am a single father of two beautiful young girls which has its own challenges as well. I am new to this forum and have been diagnosed and been treated now for 7 years. I recently just spent a week in the hospital due to a severe flare up that left me very debilitated. i now have the need of a walker at home and fight through my days at work. I am unsure what i should do my physician says that i should start the process of disibility, although i am not mentally prepared for that as of yet. Physically now thats another story.

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#254691 - 06/30/13 08:00 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
catgirl Offline
Registered Visitor

Registered: 06/07/12
Posts: 44
I just took a job that will involve mostly computer/desk work but I have a height-adjustable desk that I'm bringing to the job. I still don't know if I have AS. Nothing is showing up on MRIs but I do get stiff if I have to sit too long. My first week on the job was brutal because I didn't have my desk, had to sit for hours and hours, and the office is in the process of a move, which has meant doing some physical work. I pull muscles if I over do it.

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#255128 - 07/14/13 07:28 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
an0thermike Offline
Registered Visitor

Registered: 05/11/12
Posts: 314
Loc: SF Bay Area
I'm a visual FX artist. So I basically work on the computer making explosion, water FX, sparks, smoke, whatever. I mainly work on movies and commercials. I really don't think I could have picked a much better job with this disease. I don't really have a problem with sitting, so as long as I have a good chair, I'm pretty good. I can also work from home a lot of the time and that's pretty nice with this disease.

I am thinking about switching careers or adding a part time job however. I'm a huge baseball geek, like probably the biggest you'll ever meet. I'd really like to get into the baseball industry in some way. Probably as a writer or something, though I know that's not an easy industry to break into. VFX isn't an especially easy industry to break into either though.
_________________________
Mike / 31yo / HLA-B27+ / diagnosed with AS march 2012
FODMAP diet, Taking curcumin, and fish oil for inflammation, omeprazole, Tramadol PRN for pain, Celebrex, lots of probiotics, Xolair for rashes.

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#255130 - 07/14/13 07:43 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
Nice Mike! That's what most of the folks in my college program were trying to do (well, not necessarily all VFX, but jobs based around 3d modeling and the like). I was on a different track (essentially web design), and ultimately strayed from that for my chosen career, but it's neat to "meet" someone who's making it in a field that I know a lot of people have failed to enter. I took one of the animation track electives for fun - traditional 2d animation - and had a blast with it. Not enough to want to do anything along those lines myself as a career, but I think it's cool that you do. :P
_________________________
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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#264292 - 02/18/14 04:51 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
emz281 Offline
First time visitor

Registered: 02/13/14
Posts: 1
Loc: UK
Hello, I am a dog walker! which consists of driving around picking up dogs then going for around a 3 mile walk with them. It is a fantstic job for me as on bad flare days I can slow the pace and just throw balls for the dogs. The walking helps to loosen my stiff joints. I regularly see an Osteopath every other week to be able to keep working.

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#264304 - 02/18/14 12:38 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Sean O Offline
Registered Visitor

Registered: 09/27/07
Posts: 243
Loc: Toronto
I am a lawyer working for the government. I am lucky because it gives me great drug insurance coverage. At work, I find AS can slow me down when I am feeling pain - it becomes difficult to concentrate when pain is on your mind. Mine is mostly a desk job so I have to take the initiative to get up and walk around the office periodically to loosen up my back.

Years ago when I was in college I got a summer job at a well-known pizza chain. It required me to stand for hours in one spot and make pizzas, with only the occasional break. I lasted two days. I could do a job where I had to walk around but never one where I had to stand basically still for the work day.
_________________________
Male, early 50s, Dx AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Off NSAIDs due to stomach issues. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Small bowel issues, anemia.

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#266670 - 05/23/14 05:16 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
lookin4ward Offline
First time visitor

Registered: 05/19/14
Posts: 1
Loc: Australia
I am a registered nurse. New to this site. Looking for work after being semi-retired since 2010 due to cancer treatment. Meantime I have been carer two days per week for 2 year old grand daughter while her mum studies. I garden quite a bit but it is punishing on muscles and joints. Takes me days to recover but I cannot do nothing. I am waiting to see Prof Matthew Brown at Diamantina Institute. Right now dealing with stiffness, enthesitis, costochondritis, poor sleep, chronic pain and breathlessness (on stairs and when bending). Feeling anxious about working again and have applied for casual and part time only. Just dreading early starts because of brain fog.
Right now my doc calls my health issues fibromyalgia with sicca syndrome. I have been doing mindful self compassion practice to help deal with chronic pain and depression related to that. Really do not totally believe the diagnosis 'fibromyalgia'. I think doctors label us with that when nothing seems to fit. I am seronegative but have low iron, low D3. Waiting with some apprehension to hear from my two latest job applications.
This forum is so helpful. I really appreciate the honesty and caring support messages between posters. This is the missing link in health care.

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#267109 - 06/12/14 09:07 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
KenE Offline
Registered Visitor

Registered: 06/10/14
Posts: 5
I am a manufacturing maintenance engineer at a major auto manufacturer. I requested 2nd shift to allow for time to get moving and do stretching and traction without having to get up at 4am for 1st shift. The past two years have really been a struggle with pain, fatigue and lack of concentration. I can no longer perform at half of my previous level of performance. I have been looking into early retirement but do not think I'll make it (at least 2 1/2 yrs away at the earliest). Trying to find out if I can go onto my employer STD/LTD now (before losing my my job due to performance and attendance issues). If not I will look into reduced work week. I am thinking I should reverse the order and seek a reduced work week now and escalate to STD/LTD later if needed. Any thoughts, suggestions or similar experience? Hard to find someone to consult with on these matters.

Age 53
Diagnosed in 2007
Ankylosing Spondylitis, DDD, DJD, hypertension
Methetrexate
Humira
Norco
Bystolic


Edited by KenE (06/12/14 09:14 AM)

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#267142 - 06/13/14 09:29 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1259
KenE

I would start your own thread on the general forum. Higher visibility and therefore perhaps more good ideas.
_________________________
Ank Spon since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU and ER; R.N. San Diego ~Grasp The Challenge and Succeed~

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#267153 - 06/13/14 02:23 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
KenE Offline
Registered Visitor

Registered: 06/10/14
Posts: 5
Thank you.

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#267163 - 06/13/14 06:45 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Sean O Offline
Registered Visitor

Registered: 09/27/07
Posts: 243
Loc: Toronto
Ken, maybe you have some protections with the Americans with Disabilities Act.
_________________________
Male, early 50s, Dx AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Off NSAIDs due to stomach issues. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Small bowel issues, anemia.

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#269676 - 12/18/14 09:58 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
newjoy82 Offline
Registered Visitor

Registered: 12/04/14
Posts: 46
Loc: Texas
Hi, I'm a sales & marketing administrator... I work in Salesforce as an administrator and work on a lot of reporting - budgets, forecasting, etc...so I sit at a computer all day.

I have an hour commute both ways. I get pretty stiff sitting at work but try to get up and move around as much as possible. My biggest struggle is getting up and out of the house on time. I have major difficulty getting up early and getting moving in the mornings. I haven't figured out how to improve that. I don't stay up late but easily can sleep 8-9 hours at night which just doesn't work on the week days.
_________________________
32 year old single mom of 9 year old son.
Misdiagnosed with Fibromyalgia at 16. Diagnosed Dec. 2014 with undifferentiated spondyloarthropathy.

Taking naproxen 500mg 2x daily, pantoprazole (so the naproxen doesn't kill my stomach), tramadol 50mg (rarely - don't like how it makes me feel) & plaquenil 200mg nightly. Gralise 1800mg & 10mg amitriptyline for migraines.

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#272876 - 12/16/15 08:19 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
jasonpaul Offline
Registered Visitor

Registered: 11/11/15
Posts: 29
Loc: MN
I work in a library. Sometimes my pain and fatigue causes me to cut short my day. Other times I need extra sleep due to insomnia from pain. I use intermentent FMLA for that and apointments. I often am hobbeling around and have pain at work. But my job is low stress which helps a huge amount.
_________________________
25 yr+ with significant and aggressive A.S. and scoliosis. Currently on Remicade, methotrexate, nsaids, steroids, gabapetin, mobic.

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#274842 - 06/02/16 01:20 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
GloriaB Offline
Registered Visitor

Registered: 06/01/16
Posts: 2
Loc: Canada
I am a Technical Engineer. On the computer all day. My company purchased me a stand/sit desk and wireless headset which helps. I work full time from home. My employer has been great and very flexible.

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#274856 - 06/04/16 03:32 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 332
drink coffee, remember my old days, read this forum...and...waiting for the eventual truth. Sometimes I get hopeful about my condition, but they are very short living

As a side job: I am an IT professional


Edited by Shippingnews (06/04/16 03:33 AM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016

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#275294 - 07/11/16 12:11 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
KayF Offline
Registered Visitor

Registered: 07/11/16
Posts: 63
Loc: Florida
I have been recently been diagnosed with AS. I have had insidious issues with pain and muscle fatigue constant tailbone pain as a teenager. Some pain issues as a child that never kept me from living my life and being very active. The problems over my late childhood and adult life have not hung around long enough for me to pay attention to them and the doctors always have a reasonable answer. When I hit my late 20's and 30's I began to have neck pain which me and ortho attributed to my work as a nail tech for 10 plus years.(Falling cervical disc)I delved into healthy clean eating and almost obsessive excersize which for many years seemed to be making me feel better although I still had ache and pains I had energy and stayed busy. around 35 and after I just didnt feel good and had a spell with my muscles getting sore and hurting all the time after activity and activity was making me tired not giving me the pump I was use to.Practitioner ruled out everything lupus, rheumatoid etc and decided I had fibromyalgia so that is what I went with and began tramadol wich knocked out my tailbone pain to my amazement. I decided a career in nursing would be wise and give me more options and benefits since doing nails I thought was causing me more pain and aggravation.Last year I graduated from nursing in August barely due to severe low back pain and aggravation not being able to concentrate so much. Over came that got a job the day after graduation which due to being sent to neurosurgeon to check out my back pain I had to wait a month to be cleared by doc after hiring. So embaressed. found out I had a chronic fractured sacrum not acute with l4,l5 and s1 small bulging disc. OK now I know why I hurt so bad and feel like I am dying. Went to work and have worked my butt off doing 7pm to 7am full time shifts. Now 8 months into this job my back has not relented I am extremely tired and do not know what I am going to do. I went back to another rheumy month and a half ago .Great doc he told me I was not a typical fibro patient. At this point my hands and feet hurt my spine feels like it is rotting out and hurts even more when I lay down. Had more blood work which included inflammatory markers that were elevate and HLA B27 which I was positive for, still negative for rheumatoid and ANA. I began to read about the gene and AS and thought about my little old grandma who was bent over to her hips. her spine was bowed completely. she was ate up with arthritis and it all clicked to me what it was. When I went back to doctor he confirmed what I had suspected myself after seeing my own blood work and reading about gene and AS association.He put me on indomethacin and sulfasalazine and said not to take anymore aspirin or celebrex.I have done this for four weeks now and I am more tired and in more pain, I am nauseated and do not want to eat and I have taken more time off work because i JUST CANT physically and emotionally do my job anymore. I called doc this morning for another suggestion and am waiting to hear back. I cant believe I have spent so much time to go into a new career and now I cant even do it.I am stiff and hurt all day not just an hour anymore. I move around and I am only more tired .I cant afford to not work and I do not know what to do.Sorry if too long. I could write so much more.

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#276064 - 09/17/16 11:46 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
theyoungestmuse Offline
Registered Visitor

Registered: 11/15/15
Posts: 29
I want KayF to know that I understand both the physical pain she is feeling but most importantly the emotional pain. It is devastating to know that the profession you aspire to is hurting you. You end up faced with difficult choices about your career or lack of such while you are trying to get correctly diagnosed and treated with medications that have a dark side like no other.

If I had only known is my mantra. I would've chosen another career. changed careers, not told my boss about it, not asked for accommodations, not filed for short-term disability so much, etc,etc,etc. It is a kick in the teeth.

So KayF do some short and long term planning. Research and use supplements that knock your immune system back. Fish oil is a big one. Some use antidepressants, vitamin D and/or A. Sunlight exposure helps. See if you are anemic. Get yourself to a place where you can make decisions about your future with a relatively clear mind. You will need medical insurance for sure because you are likely to end up on a biologic. But you may need to look for jobs with shorter and/or fewer shifts. And save money as best you can. Live frugally and save, save, save. Try to work for a company that is compassionate. However be aware that in tough times even compassionate companies will let people go who are high utilizers. Keep us in the loop. I have been there. Hell, I am there.
_________________________
HLAB27+(thanks,dad)iritis at 17, plantar fasciitis at 22, sacroiliitis at 25,first image at 31,diagnosis of AS at 48(hello medical community!!) it's all been downhill since(Enbrel,Celebrex,Trazodone,Tramadol,high Omega3,A&D to tame immune system)

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#277029 - 01/09/17 01:37 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Deb1648 Offline
First time visitor

Registered: 07/08/16
Posts: 1
Loc: Idaho
I know this thread hasn't been active in a while, but I thought it would be a good place for me to start... This is my first post on the forum. I was diagnosed with undifferentiated spondyloarthritis a year ago, but suspect that I developed it years ago.

I'm 48, and a full-time, 1st-8th grade music teacher with a really full, busy schedule. My job has some definite benefits, and some definite drawbacks.

Benefits: It makes me get up every day, no matter how lousy I feel. Teaching kids is one of those professions where you have to be "on" all the time. There are so many kids with so many needs, it helps me to not think about myself as much as I would otherwise; plus I'm very passionate about music education, and that passion fuels me, even when my tank is on empty. At heart, I am a performer, so my acting mentality (the show must go on!) kicks in whenever I step up in front of a class. I am so busy, with precious little prep time or free time in my schedule, that I often forget about just how much pain I'm in, and how exhausted I am while I'm "on." Secondly, I'm constantly moving, but not in a strenuous way: I'm standing in front of the class, leading them in stretching and moving to the music; I'm sitting at the piano; I'm walking down the hall to copy worksheets; I'm sitting at my computer recording grades or answering emails; I'm standing up playing guitar: I'm doing the chicken dance with 60 laughing seven years olds; plus, I can subtlety adjust whether I am standing or sitting, watching or participating, on those days that it just hurts too much.

Drawbacks: Having such a hectic schedule (I'm also a wife and mother of four kids ages12-20), I often overdo it at work, and have nothing left for my family. I've never liked cooking, and though we do usually eat dinner together every night around the table, it is often unhealthy, processed, frozen, quick meals or casseroles that aren't helping my condition. I have trouble sleeping many nights, due to pain, stress, or guilt about my family or work. I have very little time, and absolutely no energy to exercise, and I am at least 65 lbs. overweight. My relationship with my wonderful loving husband suffers because healthy him can't understand how I can do so much at work, and push through the pain there, but am too exhausted and depressed during the evenings, weekends, and holidays to do the same at home. He tries to be encouraging, he urges me to try to be healthier, and he pitches in with laundry, dishes, cleaning, etc... more than any other husband I know. Plus, he works a full-time job and manages a trailer park in his "spare" time. He rubs my feet almost nightly without me asking, and loves me unconditionally; but deep down, I believe he thinks I'm just a hypochondriac who would be fine if I'd eat healthier, exercise, lose the extra weight, and have a positive attitude. Honestly, due to the irregular nature of this disease (sometimes the pain is excruciating, sometimes it's more mild; it affects different places more severely at different times), I sometimes feel, too, that it's all in my mind, and just due to my poor health choices. I do understand that making better lifestyle choices would help alleviate some of the symptoms, and at least slow things from worsening. It's just so hard to fit it all in. I am trying, little step by little step.

I have also had a lot of other health related issues: last spring I had to have my gal bladder removed; I occasionally deal with crippling BPPV (vertigo) attacks; and I have issues with multiple cervical cysts, polyps and uterine fibroids, irregular periods, and awful PMS; I've had foot neuromas and bunions removed, along with plantar fasciitis . All this, and I have still not had to take more than a handful of sick days in that past 4 years! It's all in the timing, I guess.

I know that something has to give. I have had a few "crashes," where I just can't handle things, physically or emotionally, and just want to quit my job. Sometimes I put things on "auto-pilot," and don't give the 100% I know my students need (guilt!). I also go through severe bouts of depression - which overwhelm me most when I am on school breaks - probably because the pressure is off and I allow myself to have pity-parties. I know that with my temperament, and from my past experience, being home alone during the day, instead of working, would be a bad thing for me. It's bad enough on weekends and breaks when I try to rest - I tend to overdo that, too. Then there's the financial aspect. I have decent insurance (which really helps with all this medical chaos), plus my paycheck accounts for half of our family's income. We are doing okay, financially, but are by no means accruing great wealth. I think trying to get by on half our income would be even more stressful. It's probably due to my artistic and somewhat obsessive-compulsive personality that I feel trapped within this paradox: this job that I love and excel at, that it is so very beneficial to me and others in so many ways; is slowly killing me.

My Christian faith and my loving husband tell me I am not alone in this, but I just feel so alone, sometimes. I feel trapped, confused, helpless, and countless other emotions at any given moment. I am praying for wisdom to know what I should and can let drop at work, and for discipline to at least do all the "little things" I can with food and exercise to benefit my health.
_________________________
I am a 48 year-old wife, mother of four (ages 12-20). I teach general music full-time to grades 1 through 8. I was diagnosed with Undifferentiated Spondyloarthritis around December 2015.

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#277055 - 01/12/17 07:23 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1605
Loc: MS
Hi Deb, and welcome to the forum. You sound like an awesome teacher, and I'm sorry you are having such a rough time. You might want to repost this in the General Message Board forum where more people will see it. smile


Edited by SouthernMoss (01/12/17 07:24 AM)
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#277058 - 01/13/17 04:00 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Ken Delano Offline
Registered Visitor

Registered: 05/26/04
Posts: 1483
Loc: Minnesota
Welcome to the forum Deb. Sorry that you had to find us, but you will be glad you did. To echo what Ginny said, go to the general discussion and introduce yourself.
_________________________
AS/PsA DX in 1988

Retired on disability
in 2005 at age 44

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#277067 - 01/15/17 03:32 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
Ugh, so many stories we all wish we didn't have to write! This disease really does suck! It reeks havoc on our livelihoods, our social lives and mental health.

I'm currently lucky enough to work for a large pharmaceutical company (yes, one who makes a few of the biologics, we discuss here) with a boss that gets it.

Pros:
I can use my heating pad at the office and do, every day.

Work provides ergonomic assessments for all employees, so I have a great chair, sit at the right height, monitors at right height, blah, blah, blah

I can take sick time for my Remicade infusions (which I always schedule in the afternoons so I don't have to take full day off every 5 weeks- and bonus the Remicade is free)

Hours are flexible with start and end times

Can work from home one day/week-that's my infusion day-minimize time lost due to commuting.

Cons:
I'm also a mom to 3 - my twin boys are in their senior year of high school, and 12 year old daughter is in 6th grade. The boys don't drive (don't ask, I don't get it, I'm begging them, and my daughter plays tournament softball (currently practices 8 hours/week) and plays basketball, so we're always hopping.

I own and am responsible for 2 GMP global computer systems and have to sometimes take off hours Webex meetings - not great for sleep.

I love what I do, but my group is under staffed, and my job is stressful, with the added responsibilities that come with regulatory compliance associated with Pharma. Most of our IT is outsourced, so they tend to have a high turn-over rate, so I serve as IT, Validation, and quality compliance for the systems too.

I have a problem employee who makes everything personal with me and acts like a child.

I often have brain fog at work-I don't often feel like I'm at the top of my game anymore

Work stress often induces flare-ups

The fatigue and ability to concentrate are bad-I don't feel as productive as I once was - I do get hit from all sides all day long though-the systems are the most important part of my job, but oddly, I have little time to focus on them during the day due to other priorities. I often work nights and weekends to try to keep my head above water.

The stupid politics and difficulty of all the spam that should be easy that is increadibly hard and frustrating that come with large companies now infuriates the hell out of me. Oh wait, there's that flare up😜

While the office allows my hours to be somewhat flexible, my families' needs ultimately dictate my hours-as they should! Just the juggling act we all do.
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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