How has your life been affected by a disability? (Yours or someone else’s.)
What experiences have you had with disability issues? What can you add to the author’s do/don’t suggestions?
Share your thoughts with your fellow members!
2 Likes
It has been about 4 years now. My life has been affected mostly by just the strain and stress of trying to continue to work will in pain. Today is one of those days I am ready to throw in the the towel.
I had to fight with my employer some a few years ago to get to work from home on really bad days, that has helped some, but not much.
Just the day to day stress of dealing with the pain is hard. I hate those commercials for all the biologics, like Phil. I can’t find anyone that can still play golf with this junk.
Or the ones where “I’ll go swimming or take a long hike now!” Long hike! I do good to make it from the car to my office every day. I have so many things I need to do, some are work around the house, some are for my hobby, that I just can’t get done. Not being able to do the simplest things is discouraging.
Do’s and Don’ts. DO: Hang in there. Keep searching for a med that works.
DON’T - Don’t expect people to understand your problem, especially spouses.
2 Likes
It’s truly tough isn’t it? Hugs xxx
Do: organise a large and noisy protest at the premises if chucked out of a supermarket for spending money too slowly. (Or maybe there was one?)
1 Like
I agree about the Phil Mickelson commercials - I hate them!!!
Promotes such a misconception of our disease. All we have to do is get a shot and will be running around on the golf course or elsewhere. It really gets me angry when I see commercials like Mickelson’s! A huge disservice to all of us.
1 Like
About Phil Mickelson…I’m not a fan of the commercials either other that they DO promote folks for pushing for early and aggressive treatment. I have had the privilege of meeting him at private party. (A friend of my cousin is one of the managing trustees for the Mickelson Foundation and lets me hang around once in a while)
So let me tell you a bit about Phil Mickelson and PsA. First of all He was nearly bed bound for a year. He wasn’t able to move around at will much less play golf (he can’t now much anyway). Ask him about Enbrel and he makes Grandma J sound like an Enbrel Hater. BUT he also endured heavy PT and Training nearly six hours a day seven days a week after the flare that really laid him out. Something we know can/does work but most of us simply can’t do because we lack whatever it is that drives those kind of folks.
HE approached the Enbrel folks. FWIW every DIME he makes from that endorsement goes to the foundation that supplies free enbrel to the uninsured. Most of his other endorsement deals go into the phil Mickelson Foundation which directly assists patients (especially breast Cancer)
So I clench my teeth when I see those commercials, but I KNOW he is a real patient who lost MILLIONS of dollars and a very shortened/altered career due to PsA and yet is spending millions to help others…
BTW my disease is considered very severe and I play golf regularly when the snow isn’t flying. Its a great sport for PsA.You can adjust what you do and how you do it to how you are feeling that day. Clears the cobwebs AND the depression Motion is Lotion. My niece who has a similar form of arthritis was also on the LPGA for awhile and had to retire early still plays regularly. We normally only play nine make lots of approach shots and have one of the kids following us with a cart when the need arises.
I changed jobs twice before going into academics and research something I really didn’t want to do. I went from a career that required very minute manipulations hours at a tim standing in one place to a career that required less minute manipulations but still required long times of standing in on place. Whether it was my hands or back the gave up the ghost first (and it didn’t happen frequently) was always the challenge. I just couldn’t risk it anymore. Years of education flushed - BOOM.
I get it it took me years of treatment and PT (not to mention a period of rehab from pain meds after the spinal fractures that “didn’t get better” to get to a level I could function (physically) close to normal. The last few months that I have been involved in “Office Time Projects” 12 - 16 hrs a day has taken a terrible toll recently Pain levels and Depression are booming due to lack of activity. But you know what? The past few years Phil Mickelson has been an inspiration. If you ever have the opportunity to hear him speak at a Be Joint Smart event DO SO!
2 Likes
We don’t get ads for biologics in the UK … yet.
Totally understand those who resent the simplistic approach that these ads would seem to represent. However I was disabled by PsA before starting on Humira in 2014 and now I’m not. If it was ‘just’ a flare it was a long one i.e. years. I have been extremely lucky, that kind of result does not always happen but it can.
2 Likes
Thanks for the info & clarification on Mickelson.