MamaO, I totally understand what you're asking. In 2006 I left a very senior position in a career I'd had for 25 years. When I announced my resignation many people couldn't see beyond my professional persona and worried what would become of me. I, on the other hand, had become increasingly disenchanted with who I'd had to become to satisfy all the needs of these other people ... I felt I'd lost 'me'. I'd planned this a while so was able to save up to fund a year without working while I figured out what I wanted to do .... ultimately this was to follow my passion for animals and I used my life savings to set up a small boarding cattery business from my home. Then PsA struck in late 2011 and now I've had to close my business as well.
What I think I want to say to you is two things. 1) You are so much more than your job or the person you perceive your job makes you and 2) as one door closes another invariably opens .... just as I was feeling pretty low about closing my cattery I was invited to join the moderators here at LWPsA. I would never have imagined this but I love it. I love people, I love helping people and this way I can use my own experiences to support other people. Who'd have thought it? Not me!
I agree with Rachael, why don't you post this question in a new discussion and see if we can get some more members input?
MamaO said:
I'm so happy to have picked up this thread! Thanks everyone! I see that many of you still work, despite the exhaustion/pain. My question is, when life becomes 1. Work, 2, recliner, 3. Bed on weekdays & 1 catch up house/chores, 2.recliner, 3. Bed on weekends, is that life? I in the Dilemma of choosing to try for disability because we depend on my income to run household. Plus, work is such a huge part of my identity, who would I be if I no longer work? It's a very emotional process on top of the physical. Any thoughts?
Thanks Jules.....things are a bit different here in the US...the insurance I have requires referrals for everything or it's totally out of my pocket.....but will have new Derm and Rheumy by first week in June, looks like, so hopefully can move forward with them! :) Hope you have a better week as well!
Jules said:
Yes, me too sunshine!
What I have discovered, in the UK at least, is that private x-rays are not horribly expensive so I've been able to ask my primary care physician/general practitioner to do the required referral - a much easier decision for him as he's not having to justify the expenditure. Something I've also done in the past is have another of my practitioners do a referral for me so if you see a physiotherapist, chiropractor, podiatrist etc they may also be able to help. I also discovered this week that (again here in the UK) at some private clinics I can self-refer for MRI's.
As I understand it the radiographer does the actual imaging but then it is reviewed by a radiologist who issues the actual report .... and this is all part of the one action. Once you have the report you can then provide a copy to your rheumy for discussion at your appointments.
It is far from ideal, far indeed, but I've come to realise that sometimes the system isn't all it should/could be and we don't all have access to gold standard care that you get at specialist PsA centres. That would also be my other suggestion, see if you can access a centre of excellence/research centre for PsA.
sunshine said:
I am having trouble getting anyone to do x-rays or MRI to see / show the damage so we can track it....suggestions??
After six years, the pain never goes away. After six years I’ve learned to meditate, laugh, and keep on rocking to the next music revolution. Have plenty of patience and invest in your pain. I have a power chair with heat and massage. I have a power bed that has massage. Down load some comedy. Sitcoms and cartoons are the best. I listen to music everyday. It’s the universal language. You want to know what’s going on in the world,listen to music! Engage in yourself!
"TOP"....what a wonderful outlook you have! I must admit I still get grumpy and frustrated but am truly inspired by your outlook!! Thank you for sharing!! :)
I did not become pain free until a year on Remicade and began exercising! Yes, I said exercise. In other posts you will see that prior to coming down with bronchitis and severe asthma I was exercising 3 days a week, lifting light weights, 20 reps, using a recumbent bike with arm movements, walking 8000 steps a day. I felt better than I have in years!
As little exercise as I was able to do at the beginning, after 3 months I progressed slowly, and then little to no pain!
Lastly, but equally as important I lost weight which takes stress off my joints!
Hang with the Remicade, give it more time and exercise as little as you can.
Thank you. I have my 4th infusion on Friday. I appreciate your story and sharing. I am planning on giving Remicade a good try. It has helped, although it seems to have "worn off" some the end of last week. It will be 8 weeks between infusion this time. I have heard you can have it a little more often if needed. I think I am going to ask if I can have it at 7 weeks next time. I have been walking a couple of miles 3-4 days a week. It helps the most out of everything I think. Since I was diagnosed a year and few months ago I have lost 27 lbs. I figured I'd try to give my knees and ankles joints a break. I do need to loose some more weight and am giving it my best. I'm still on some steroids so it is slow going, but making progress. I am impressed with all your exercise!! Thanks again. It's nice to know the Remicade will keep on helping more as the time goes on.
Immunity? said:
I did not become pain free until a year on Remicade and began exercising! Yes, I said exercise. In other posts you will see that prior to coming down with bronchitis and severe asthma I was exercising 3 days a week, lifting light weights, 20 reps, using a recumbent bike with arm movements, walking 8000 steps a day. I felt better than I have in years!
As little exercise as I was able to do at the beginning, after 3 months I progressed slowly, and then little to no pain!
Lastly, but equally as important I lost weight which takes stress off my joints!
Hang with the Remicade, give it more time and exercise as little as you can.