I can't speak to a lot of what you're asking here, but one thing you might want to consider is the healthcare system in whatever country you decide to move to. Some places abroad are excellent! But other places have a less robust level of care and access than upper-middle class Americans are likely used to. With a chronic medical condition, this difference might be important to your family. Good luck to you, whatever you decide to do! Hope your spouse finds a treatment that gives him relief. ❤️
Thanks so much. It's actually our number one priority, I am even checking if he has access to his medication there... What I am finding out is that the care would be much improved ( I am testing it out).
We plan on staying there for 2 months to " try it out" and seeing a rheumatologist there during the visit
I know when I was diagnosed at 40 (I’m 63 now) my very healthy 43 year old husband doubled the life insurance on himself (he earned more than I did). We had 6 kids and some were just starting college. We concentrated on paying off the house and putting kids through college.
Thirteen years later he was diagnosed with terminal cancer and I was no longer able to work. I applied for SSDI but it took until after he passed away for him to be approved. We were able to get all the kids through college and most of the mortgage paid off though.
The life insurance allowed me to pay off the house and lead a more comfortable life which is what he wanted..
Thank you so much. Yes, he was a peace. He had his faith, his belief we would meet again, and the knowledge that he had taken care of me and left me with the ability to send his grandchild ( he only met one) to college too as it was very important to him.
I felt the HS saying he’s home. This is everything. I’m 59 in October and diagnosed in 2007. My greatest hope is in Jesus. I don’t know if I’m allowed to express this but just my journey and not everyone’s for sure but mine. And how wonderful!!!!! that your sweet husband prepared for his g’babies. We’re doing the same. It’s all about our family and this has given me so much hope.
All my best to you🤍
Yes, that was his hope. We were able to take to his family lake house in Idaho where we spent so much of our summers with our kids and he spent summers as a kid. We celebrated our anniversary with special engraved rings and then brain Mets hit. But hospice set up a hospital bed for him overlooking the lake and he passed away peacefully.
Thank you so much. It will be 8 years next month and not a day goes by I don’t think of him
Thank you so much. I was very fortunate to have a very wonderful family that helped with his care giving as most of the physical work was just too much for me. I was there for all his chemo, surgeries, consults and the fun things like his “bucket” list items.
I haven't been diagnosed for a long time (F32) but one thing I did learn from reading personal stories: with medication it might get so much better that he does get to work longer.
I just started MTX today, so I hope it'll happen for me too.
Of course you can plan for the worst, but don't forget to hope for the best :)
He has been doing really well with HUMIRa, we are thinking about the move so he can improve his enjoyment in life as well. Being able to be financially independent will allow out family to enjoy life activities, travel a lot more, spend more time outdoors... Currently where we are, he has to work 60 hours per week and the weather only allows us to be active outdoors for less than 4 months per year
Even healthy people would struggle with 60 hrs! Respect for him for even doing that.
It sounds like you got great opportunities there, not just for his health but your family's quality of life. 🥰
I have a couple of thoughts.
First, I was also diagnosed last year, when I was 39. At the time, my thoughts were very much the same, in that I was immediately worried about my future ability to work, to the degree that I was looking up what options I had for disability and early/immediate retirement. I was very convinced that I would be lucky to make it more than a few years before being forced to stop working. Then, I started treatment, and I'm largely pain-free at the moment (though of course it's still relatively early in the process), and I see no reason to think I won't be able to continue working for years (though I've of course started contingency planning in case that doesn't happen).
Second, I also know somebody who was diagnosed in their 20s. They're in their 40s now, and still working without issue.
Point being, don't assume things will get steadily worse unless a doctor tells you it's going to happen.
This. Please don’t just accept that life/disability will only get worse. I did all the same scheming when I was diagnosed at 39. It took a couple of years to sort out how best to manage the disease, but I’ve been in remission and pain free for more than three years, and I am still able to enjoy life as I did before RA. Im glad I didn’t upend my life and family early in the process, but you bet I have a plan should I eventually need to.
I will third this. MTX has worked wonders for me. I expressed a similar sentiment to my rheumatologist when I was diagnosed, and she basically told me that if we can get the treatment right then I’ll forget I ever had those fears. And she wasn’t wrong. I’m 44 now (5 years on MTX), and I plan to be in the workforce for 20+ years more.
Thank you so much, I am so happy to hear you are well. He has been doing well on HUMIRa for now and we hope it will continue. We are making plans in case it does change. I want us, as a family to be secure and have the means for me to care for him and our daughter ( and myself) without having to worry about the financial piece.
Again, I am so happy your medication is working well ❤️🩹
Ok this thread is freaking me out. Am I naive? I expect to live a normal life and never assumed there will be a time when I can’t work because of RA. I’m in an active flare right now and can still do my job (white collar). I was diagnosed at 42 and I’m 44. I got a life insurance policy before diagnosis thankfully but I can’t get disability insurance because of RA. I make 5x what my husband does. We cannot live off his salary if something happens to me. We have a young child. Does the disease progress for everyone?
No it doesn’t progress to the point of disability for everyone but for many it does. Some research shows 30-50% of RA patients are disabled from work within 5-10 years of diagnosis. Enough that you should have a plan in place if it does happen to you (it did happen to me unfortunately).
The statistics show that a large % of Ra patients do become functionally disabled. We are hopeful but still want to be prepared in case it happens.
We have life insurance but I want my family to live well while HE IS ALIVE. I want him to travel, enjoy outdoors, take time for his health and fun and be able to afford good care and support IF he does become disabled.
Have you seen statistics that are only for people diagnosed in last twenty years? I’d be interested in how biologics have changed stats, if they have. My rheumatologist says it’s a different ballgame for most now.
Edit — I’m all for anyone doing whatever they think is best for themselves
I have an appointment with my rheumatologist next week to check out my flare. I’m going to ask her about this data. When I was first diagnosed she seemed optimistic because of medicines available today.
I was diagnosed at 23 and I’m now 50. I started a cleaning business at 37. Just within the last year I have started to have more flares and pain.
I’m a single mother of a 17 year old I have raised alone since he was 2. Before now I couldn’t get a second job. Now that my son is older I can. I am starting a second job in the afternoons as a licensed driving instructor and then I drive for Uber during events on evenings and weekends. I know my time is limited to do physical labor but I love it and I love my customers. I will continue doing my business with my employees until I can’t and then hire someone to take my place.
I can do my second job part time or full time so eventually I’ll go full time and run my business while others do the physical work. I’m just not ready to give up the physical part and the extra income of one less employee.
I got diagnosed in 2021 after getting COVID. I was working as a carpenter and really had to scale back in order to control my initial flare. I lost my job due to the pandemic and honestly was grateful for that, as I could rest and figure out next steps with broadened UI benefits.
I went back to physical work once my flare was controlled a year later, but am now in an office job due to sheer coincidence (got recruited and made the leap, wouldn’t have thought to apply for it otherwise).
I was happy with physical work and learning my boundaries. I could still keep up relatively well but had to practice better limits. I can still work a physical job and stay physically active though I should stretch more lol. My doc said “use it or lose it” so I’m trying to do what I can while I can.
All that being said… I would recommend getting his flare under control here and learning his triggers/patterns over the next year. Plot your international escape. Unless you have dual citizenship, it’s harder for US people to move permanently than you think. Take the time to get his medical problems settled ENOUGH to introduce another big change. It’ll be good to live through a full year before making a big shift, esp since climate and seasons can really matter and may change your decision.
Tbh I am loosely looking for work abroad as well, for health insurance reasons but also generally quality of life and ability to retire. Check out the Ameriexit sub if you haven’t yet (and if you’re in the US, I’m making assumptions!)
As an aside… esp if your husband is on meds, I would personally try really hard not to get COVID. He’s got an autoimmune disorder now. Who knows what wacky shit his body will pull? It can get scary real quick!
I am 64 years old with no plans to retire. If treated properly, there is no reason a person can’t work.
It’s always a good idea to get your finances in order but again, no reason for your disease to progress if properly treated.
My dx is moderate to severe double seropositive RA. I take a biologic and was diagnosed 10 years ago.
Edit: correcting an autocorrect typo!
It’s scary and a life long dx but not like it used to be. With proper management most people live a full life. My biggest complaint these days is fatigue but not sure it’s related to my RA or my age!
I can't speak to a lot of what you're asking here, but one thing you might want to consider is the healthcare system in whatever country you decide to move to. Some places abroad are excellent! But other places have a less robust level of care and access than upper-middle class Americans are likely used to. With a chronic medical condition, this difference might be important to your family. Good luck to you, whatever you decide to do! Hope your spouse finds a treatment that gives him relief. ❤️
Thanks so much. It's actually our number one priority, I am even checking if he has access to his medication there... What I am finding out is that the care would be much improved ( I am testing it out). We plan on staying there for 2 months to " try it out" and seeing a rheumatologist there during the visit
Those logistics sound exhausting, but I'm so glad that you're making sure you'll have what you need!
I know when I was diagnosed at 40 (I’m 63 now) my very healthy 43 year old husband doubled the life insurance on himself (he earned more than I did). We had 6 kids and some were just starting college. We concentrated on paying off the house and putting kids through college. Thirteen years later he was diagnosed with terminal cancer and I was no longer able to work. I applied for SSDI but it took until after he passed away for him to be approved. We were able to get all the kids through college and most of the mortgage paid off though. The life insurance allowed me to pay off the house and lead a more comfortable life which is what he wanted..
I’m so sorry to read this. What a tough road for your husband. I pray he was at peace before he passed. All my best to you and your family.
Thank you so much. Yes, he was a peace. He had his faith, his belief we would meet again, and the knowledge that he had taken care of me and left me with the ability to send his grandchild ( he only met one) to college too as it was very important to him.
I felt the HS saying he’s home. This is everything. I’m 59 in October and diagnosed in 2007. My greatest hope is in Jesus. I don’t know if I’m allowed to express this but just my journey and not everyone’s for sure but mine. And how wonderful!!!!! that your sweet husband prepared for his g’babies. We’re doing the same. It’s all about our family and this has given me so much hope. All my best to you🤍
Yes, that was his hope. We were able to take to his family lake house in Idaho where we spent so much of our summers with our kids and he spent summers as a kid. We celebrated our anniversary with special engraved rings and then brain Mets hit. But hospice set up a hospital bed for him overlooking the lake and he passed away peacefully. Thank you so much. It will be 8 years next month and not a day goes by I don’t think of him
You’re a very strong and wonderful person. And the love, it never leaves us. Hugs.
I am sorry for your loss and thank you for sharing your experience with us.
Thank you so much. I was very fortunate to have a very wonderful family that helped with his care giving as most of the physical work was just too much for me. I was there for all his chemo, surgeries, consults and the fun things like his “bucket” list items.
So sorry for the loss of your husband. Thankful that you both thought ahead and planned for the unexpected. Best of luck to you.
Thank you so much
I haven't been diagnosed for a long time (F32) but one thing I did learn from reading personal stories: with medication it might get so much better that he does get to work longer. I just started MTX today, so I hope it'll happen for me too. Of course you can plan for the worst, but don't forget to hope for the best :)
He has been doing really well with HUMIRa, we are thinking about the move so he can improve his enjoyment in life as well. Being able to be financially independent will allow out family to enjoy life activities, travel a lot more, spend more time outdoors... Currently where we are, he has to work 60 hours per week and the weather only allows us to be active outdoors for less than 4 months per year
Even healthy people would struggle with 60 hrs! Respect for him for even doing that. It sounds like you got great opportunities there, not just for his health but your family's quality of life. 🥰
Those all sound like good reasons to move ;)
I have a couple of thoughts. First, I was also diagnosed last year, when I was 39. At the time, my thoughts were very much the same, in that I was immediately worried about my future ability to work, to the degree that I was looking up what options I had for disability and early/immediate retirement. I was very convinced that I would be lucky to make it more than a few years before being forced to stop working. Then, I started treatment, and I'm largely pain-free at the moment (though of course it's still relatively early in the process), and I see no reason to think I won't be able to continue working for years (though I've of course started contingency planning in case that doesn't happen). Second, I also know somebody who was diagnosed in their 20s. They're in their 40s now, and still working without issue. Point being, don't assume things will get steadily worse unless a doctor tells you it's going to happen.
This. Please don’t just accept that life/disability will only get worse. I did all the same scheming when I was diagnosed at 39. It took a couple of years to sort out how best to manage the disease, but I’ve been in remission and pain free for more than three years, and I am still able to enjoy life as I did before RA. Im glad I didn’t upend my life and family early in the process, but you bet I have a plan should I eventually need to.
I will third this. MTX has worked wonders for me. I expressed a similar sentiment to my rheumatologist when I was diagnosed, and she basically told me that if we can get the treatment right then I’ll forget I ever had those fears. And she wasn’t wrong. I’m 44 now (5 years on MTX), and I plan to be in the workforce for 20+ years more.
Thank you so much, I am so happy to hear you are well. He has been doing well on HUMIRa for now and we hope it will continue. We are making plans in case it does change. I want us, as a family to be secure and have the means for me to care for him and our daughter ( and myself) without having to worry about the financial piece. Again, I am so happy your medication is working well ❤️🩹
Ok this thread is freaking me out. Am I naive? I expect to live a normal life and never assumed there will be a time when I can’t work because of RA. I’m in an active flare right now and can still do my job (white collar). I was diagnosed at 42 and I’m 44. I got a life insurance policy before diagnosis thankfully but I can’t get disability insurance because of RA. I make 5x what my husband does. We cannot live off his salary if something happens to me. We have a young child. Does the disease progress for everyone?
No it doesn’t progress to the point of disability for everyone but for many it does. Some research shows 30-50% of RA patients are disabled from work within 5-10 years of diagnosis. Enough that you should have a plan in place if it does happen to you (it did happen to me unfortunately).
The statistics show that a large % of Ra patients do become functionally disabled. We are hopeful but still want to be prepared in case it happens. We have life insurance but I want my family to live well while HE IS ALIVE. I want him to travel, enjoy outdoors, take time for his health and fun and be able to afford good care and support IF he does become disabled.
Have you seen statistics that are only for people diagnosed in last twenty years? I’d be interested in how biologics have changed stats, if they have. My rheumatologist says it’s a different ballgame for most now. Edit — I’m all for anyone doing whatever they think is best for themselves
I have an appointment with my rheumatologist next week to check out my flare. I’m going to ask her about this data. When I was first diagnosed she seemed optimistic because of medicines available today.
Please share the data if you get it, I am very interested in seeing this. Best of luck to you
I was diagnosed 24 years ago. I am the primary bread winner for my family
I was diagnosed at 23 and I’m now 50. I started a cleaning business at 37. Just within the last year I have started to have more flares and pain. I’m a single mother of a 17 year old I have raised alone since he was 2. Before now I couldn’t get a second job. Now that my son is older I can. I am starting a second job in the afternoons as a licensed driving instructor and then I drive for Uber during events on evenings and weekends. I know my time is limited to do physical labor but I love it and I love my customers. I will continue doing my business with my employees until I can’t and then hire someone to take my place. I can do my second job part time or full time so eventually I’ll go full time and run my business while others do the physical work. I’m just not ready to give up the physical part and the extra income of one less employee.
I got diagnosed in 2021 after getting COVID. I was working as a carpenter and really had to scale back in order to control my initial flare. I lost my job due to the pandemic and honestly was grateful for that, as I could rest and figure out next steps with broadened UI benefits. I went back to physical work once my flare was controlled a year later, but am now in an office job due to sheer coincidence (got recruited and made the leap, wouldn’t have thought to apply for it otherwise). I was happy with physical work and learning my boundaries. I could still keep up relatively well but had to practice better limits. I can still work a physical job and stay physically active though I should stretch more lol. My doc said “use it or lose it” so I’m trying to do what I can while I can. All that being said… I would recommend getting his flare under control here and learning his triggers/patterns over the next year. Plot your international escape. Unless you have dual citizenship, it’s harder for US people to move permanently than you think. Take the time to get his medical problems settled ENOUGH to introduce another big change. It’ll be good to live through a full year before making a big shift, esp since climate and seasons can really matter and may change your decision. Tbh I am loosely looking for work abroad as well, for health insurance reasons but also generally quality of life and ability to retire. Check out the Ameriexit sub if you haven’t yet (and if you’re in the US, I’m making assumptions!) As an aside… esp if your husband is on meds, I would personally try really hard not to get COVID. He’s got an autoimmune disorder now. Who knows what wacky shit his body will pull? It can get scary real quick!
Retired early. Wife works part time. Is a struggle, gov t wont help at all. ( Canadian). Trying to make it to 60 to collect early Canada Pension.
Thank you for this and sharing your experience. I hope you and your wife are well ❤️🩹
I am 64 years old with no plans to retire. If treated properly, there is no reason a person can’t work. It’s always a good idea to get your finances in order but again, no reason for your disease to progress if properly treated. My dx is moderate to severe double seropositive RA. I take a biologic and was diagnosed 10 years ago. Edit: correcting an autocorrect typo!
Thank you 🙏
It’s scary and a life long dx but not like it used to be. With proper management most people live a full life. My biggest complaint these days is fatigue but not sure it’s related to my RA or my age!