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#235625 - 06/27/12 04:14 PM What is your Job? What are the pros/cons with AS?  
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pilotmike5 Offline
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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.

Last edited by pilotmike5; 06/27/12 04:14 PM.
#239657 - 08/29/12 01:21 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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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
#239788 - 08/31/12 03:41 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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lauralynn Offline
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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!!
#240007 - 09/05/12 01:50 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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Philip Offline
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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.

#240011 - 09/05/12 03:21 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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AchingComic Offline
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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
#240016 - 09/05/12 04:02 AM Re: What is your Job? What are the pros/cons with AS? [Re: AchingComic]  
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winelover Offline
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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

#240018 - 09/05/12 04:17 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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Tulipan Offline
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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.

#240027 - 09/05/12 03:16 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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WhiteCell Offline
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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.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#240031 - 09/05/12 08:14 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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JenInCincy Offline
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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
#240032 - 09/05/12 08:30 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]  
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WhiteCell Offline
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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.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
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