Managing Symptoms, Kids and a Job

By Emlove21

1 min read

I posted awhile back and want to give an update. So I've been busy with work and dr appointments.

My AS has attacked my left eye since 2015. I lost sight in 2019. I feel like there's a film over my left eye. I have to see a specialist for that now, too. I take methotrexate and folic acid supplements. I take B12 injections, which give me no energy at all. It actually does the opposite, I’m always tired. The only other symptoms I have is my neck really but I go to physical therapy for that this week.

I work as a nurse assistant and have two young boys. I guess I’m here to ask, what are everyone's symptoms and how did or do you handle all the dr appointment’s for your self on top of every day life activities such as work, kids and husbands/wife’s? Did you end up have to be a SAHP (stay at home parent)?

I’m getting ready to talk to my dr about being on disability and what my options are. I want to work. I go to school so I can become an RN.

My boys play sports and I work. Dr appointments for myself and my kids is a lot and I am starting to miss more work because it seems like almost every month I’m getting bombarded with more dr appointment of some sort.

Would love to hear how you got ur life organized with all of this.

Sincerely overwhelmed,
Emily 😔

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Steve Tuffin Moderator
<inline-mention username="Emlove21" user-id="4718535"/> Hi Emily. I am so sorry to hear you are having a tough time. My children are grown now and life is a little easier for me but being a bit older has its challenges these days. I'm sure that's perfectly normal though. For AS sufferers, anyway. I still do two part-time jobs and have the day to day stuff to deal with that we all do. So, I'm not sure if this will help, but there are days when I can't manage or organise. Which can be stressful, of course, because some things just can't be put off. But it seems to me that one way or another things work out. Not necessarily as efficiently or effectively as I'd like them to, but enough to mean I don't lose too much sleep over it. It's a dreadful cliché, but I try to take each day as it comes, do what I can and if the AS slays me, then I try to roll with it. I also try to prioritise. I make lists - on my phone. Old-school, probably, but there's something very satisfying about ticking off items on a list - even if it's not all of them. And my PC and phone have these excellent apps where you can create and keep lists. Blimey, that sounds boring. But hopefully it might be of some use. Certainly not a cure-all. A talk with the doctor will help too. I'm not sure if you are in the US or the UK, but there are benefits in the UK that you can apply for and continue working too. Best of luck. Steve (Community Advocate)
SuzyQ22 Member
 <inline-mention username="Emlove21" user-id="4718535"/> Hey , How are you finding the PT for your neck pain ? One of my main effected areas is my neck too and the Physio really helps along with regular massage too . Have you tried any swimming ? You mentioned you have two boys , so do I and they are also into sports and have lots of energy .How old are yours ? I find swimming really helps with the stiffness and it’s a place I can take the boys to as well so they can let off steam and I get my fix to help with the A.S at the same time . I can relate to you that it can be a juggle and I am also a Health care assistant at the hospital which is a full on job in itself . I would love to do my nursing but am putting it off for now until the boys are more independent . I do mobile hair too which I find less taxing on my joints and can do this at my own pace , unlike being at the hospital is all rushing around . I do struggle more with work now a days so try and find a balance between making enough money and having some chilled out days too . Do you have any family support near to you ? I feel like there is no harm in discussing disability with your doctor as if you could get extra help maybe you could continue with the work you do but go part time ? Always an option and something to look into . Wishing you well and blessings to you .