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#267163 - 06/13/14 09:45 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: 254
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 12:58 PM 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 11:19 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 04:20 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 06:32 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 348
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 06:33 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
On cosentyx 300mg a month since Dec '16

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#275294 - 07/11/16 03:11 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
KayF Offline
Registered Visitor

Registered: 07/11/16
Posts: 70
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 02:46 PM 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.
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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 04:37 PM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
Deb1648 Offline
First time visitor

Registered: 07/09/16
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.
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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 10:23 AM Re: What is your Job? What are the pros/cons with AS? [Re: pilotmike5]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1629
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 10:24 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 07:00 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: 1499
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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