So....I've been up since 2am.....have to be at work @ 8am.....just for 2 hrs today .....This has been a rough week and I need some perspective....
I've been on Humira now for several wks....dose 7? and it has been working great! My Psoriasis, which was ridiculously out of control, has almost completely cleared. I haven't been in nearly as much pain from the PSA as before....until this week. I know there can be flare ups and hoping that's what this is....
My stress level is off the charts right now.....husband is out of work and looking but not finding yet......I'm struggling to work 32 hrs a wk.....work is CRAZY busy right now....enter more stress....and my hands and wrists are so painful it's waking me up again....even with the Ambien. And did I mention my neck pain? And the fatigue is ridiculous! So, most likely the new job will require a move and I can no longer do all I used to do in my career and now even the typing is becoming a struggle so how am I supposed to find a new job and if I don't what do I do about insurance?? OK, so I'm freaking out a little....ok...a LOT.....
I can't keep up with what I have now at work and forget home! I've tried to get my husband to help but he doesn't have much to give right now either....
So....the whole "Quality of Life" BLOWS right now.....I really have a good pain tolerance - not just my opinion - I can't work full-time d/t the pain and fatigue....if I try and do what I SHOULD do or even more of what I should do at home, I end up taking 3 hr "naps"! I KNOW there are those of you out there who are not on disability and seem to be able to manage a FT job and then some.....HOW??
I am really so frustrated and defeated I can't see what direction to take...
Thanks for listening to the rant and for any advice!
Is there any time worse that 3 am to try to sort out your life? Ugh. I hope you got back to sleep for a bit, and woke up to sunshine. To me, at least, everything looks bleakest in the wee hours.
If you're seeing improvement on Humira, this week may well be a temporary setback. This particular time of year is usually my worst. The stress of an unemployed husband is awful, too, and most men get pretty grumpy in such situations which makes it even harder on everyone else.
I work full time. For various reasons there's really no choice. How, I'm not sure, except that I, like you, have a very high tolerance for pain, I work for really great people, and I have a multifaceted job that allows me to choose (to an extent) whether I'm sitting, standing, moving, etc. Are you in a highly specific field, or are there a lot of things you can do? As far as keeping up with the house, there comes a time to just go ahead and lower your standards!
Moving is more upheaval, even if it's for the best of reasons. I hope something does come up soon for your husband. As far as insurance goes, the new laws make that whole situation far easier. If you aren't covered under a new policy at your husband's work, you can find something on the exchange and can't be denied for this fetching little pre-existing condition we all share. I got new insurance for my family through the exchange, and so far it's been really good coverage.
I hope everything settles down for you, and that the next phase of life starts to reveal itself. May next week be better.
Thanks for the encouragement Louise! :) Hope you have a wonderful, relaxing weekend!
Louise said:
Is there any time worse that 3 am to try to sort out your life? Ugh. I hope you got back to sleep for a bit, and woke up to sunshine. To me, at least, everything looks bleakest in the wee hours.
If you're seeing improvement on Humira, this week may well be a temporary setback. This particular time of year is usually my worst. The stress of an unemployed husband is awful, too, and most men get pretty grumpy in such situations which makes it even harder on everyone else.
I work full time. For various reasons there's really no choice. How, I'm not sure, except that I, like you, have a very high tolerance for pain, I work for really great people, and I have a multifaceted job that allows me to choose (to an extent) whether I'm sitting, standing, moving, etc. Are you in a highly specific field, or are there a lot of things you can do? As far as keeping up with the house, there comes a time to just go ahead and lower your standards!
Moving is more upheaval, even if it's for the best of reasons. I hope something does come up soon for your husband. As far as insurance goes, the new laws make that whole situation far easier. If you aren't covered under a new policy at your husband's work, you can find something on the exchange and can't be denied for this fetching little pre-existing condition we all share. I got new insurance for my family through the exchange, and so far it's been really good coverage.
I hope everything settles down for you, and that the next phase of life starts to reveal itself. May next week be better.
Not diminishing any of your problems, but the fact is there MANY families facing the problems you are with job moving schools etc. Its the age and economy we live in. They are as stressed and losing as much sleep as you. I guess what I'm saying is with or without the PsA your life would be facing a swirly. I realize that doesn't help but I want you to understand it isn't all the disease. In fact I would bet a dollar that much of your disease is a result of the job situation. You just need to break this into small pieces somehow.
Of all the options available to you I promise you disability is the worst. If you do have to move (or even if you don't) I self refferal to your state Voc Rehab will be great. With a case manager, you can break things into smaller pieces much easier.
As far as working it helps that I LOVE what I do, but even when I don't..... realizing I have no choice in the matter, a MASSIVE mortgage, two nannies, a special needs grandaughter, and very high expectation of life style- I work anyway.
Sorry it's not sunshine all the time at the moment, Sunshine (tee hee). My stress level has been through the roof the last ten days and while I surely don't have the added pressures you're facing, I know that my stress is messing up my joints for sure. The advice you've gotten about trying to take bite-size chunks to handle one at a time instead of chewing on everything all at once is really solid. And the middle of the night is NO TIME to start making plans. Louise is right-on there!! You know the thing about not making decisions if you're hungry, angry, tired or sad, right? While you will think about it when you're up in the wee hours, just don't act on any ideas you come up with!! Things rarely get bad all at once--life and stress is usually incremental. So fixing things and feeling better will happen incrementally, too. Unfortunately the snail's pace is pretty frustrating! Hang in there.
Life is always prone to high stress times, but its harder with a condition like PsA that responds to stress by flaring.
I have had to look long and hard at this work/life balance thing several times in the last few years, and am constantly looking at how to improve my quality of life.
Work seems to always be “the priority” in our lives and the quality goes right out of the window…the home things get put further down the list.
You can’t be all, do all, all of the time Sunshine, it just isn’t sustainable.
Think lamb has hit on a good idea with the Voc Rehab I’ve heard that they can be very helpful. You need some support from somewhere where the practical issues are looked at and discussed logically and step by step…when you have a clear plan things can look better and it doesn’t sound like your partner is in a good enough place to help with that.
As to the “how to do the FT thing” I’m lucky enough to be able to cut my hours and will may have to cut them more if my employer agrees (fingers crossed) it will be tough and I have to get tough but I have no other option at the moment…Found my proposed path from sitting down with a Citizen Advice volunteer and thrashing it out, exhausting but useful to have a fresh pair of eyes.
I hope you find your way though this Sunshine, there is always a way…you just have to find it.
Life is always prone to high stress times, but its harder with a condition like PsA that responds to stress by flaring. I have had to look long and hard at this work/life balance thing several times in the last few years, and am constantly looking at how to improve my quality of life. Work seems to always be "the priority" in our lives and the quality goes right out of the window......the home things get put further down the list. You can't be all, do all, all of the time Sunshine, it just isn't sustainable. Think lamb has hit on a good idea with the Voc Rehab I've heard that they can be very helpful. You need some support from somewhere where the practical issues are looked at and discussed logically and step by step...when you have a clear plan things can look better and it doesn't sound like your partner is in a good enough place to help with that. As to the "how to do the FT thing" I'm lucky enough to be able to cut my hours and will may have to cut them more if my employer agrees (fingers crossed) it will be tough and I have to get tough but I have no other option at the moment.......Found my proposed path from sitting down with a Citizen Advice volunteer and thrashing it out, exhausting but useful to have a fresh pair of eyes. I hope you find your way though this Sunshine, there is always a way......you just have to find it.
Thanks Louise! I am hoping to get with my Rheumy by the end of the month and see if we can work on a plan....that does NOT include MTX but perhaps some OT or Voc Rehab.....:)
Terrco said:
Louise Hoy said:
Life is always prone to high stress times, but its harder with a condition like PsA that responds to stress by flaring. I have had to look long and hard at this work/life balance thing several times in the last few years, and am constantly looking at how to improve my quality of life. Work seems to always be "the priority" in our lives and the quality goes right out of the window......the home things get put further down the list. You can't be all, do all, all of the time Sunshine, it just isn't sustainable. Think lamb has hit on a good idea with the Voc Rehab I've heard that they can be very helpful. You need some support from somewhere where the practical issues are looked at and discussed logically and step by step...when you have a clear plan things can look better and it doesn't sound like your partner is in a good enough place to help with that. As to the "how to do the FT thing" I'm lucky enough to be able to cut my hours and will may have to cut them more if my employer agrees (fingers crossed) it will be tough and I have to get tough but I have no other option at the moment.......Found my proposed path from sitting down with a Citizen Advice volunteer and thrashing it out, exhausting but useful to have a fresh pair of eyes. I hope you find your way though this Sunshine, there is always a way......you just have to find it.
Thanks for the reality check! You are exactly right and I just needed some rest and a "Buck Up" moment! I will just have to take time to sort this out.....Thanks!
tntlamb said:
Not diminishing any of your problems, but the fact is there MANY families facing the problems you are with job moving schools etc. Its the age and economy we live in. They are as stressed and losing as much sleep as you. I guess what I'm saying is with or without the PsA your life would be facing a swirly. I realize that doesn't help but I want you to understand it isn't all the disease. In fact I would bet a dollar that much of your disease is a result of the job situation. You just need to break this into small pieces somehow.
Of all the options available to you I promise you disability is the worst. If you do have to move (or even if you don't) I self refferal to your state Voc Rehab will be great. With a case manager, you can break things into smaller pieces much easier.
As far as working it helps that I LOVE what I do, but even when I don't..... realizing I have no choice in the matter, a MASSIVE mortgage, two nannies, a special needs grandaughter, and very high expectation of life style- I work anyway.
Hahahahaa! Thanks Janeatiu...for the tee hee and the reminder! Sorry you are having a rough go as well and hope things will relax soon!
janeatiu said:
Sorry it's not sunshine all the time at the moment, Sunshine (tee hee). My stress level has been through the roof the last ten days and while I surely don't have the added pressures you're facing, I know that my stress is messing up my joints for sure. The advice you've gotten about trying to take bite-size chunks to handle one at a time instead of chewing on everything all at once is really solid. And the middle of the night is NO TIME to start making plans. Louise is right-on there!! You know the thing about not making decisions if you're hungry, angry, tired or sad, right? While you will think about it when you're up in the wee hours, just don't act on any ideas you come up with!! Things rarely get bad all at once--life and stress is usually incremental. So fixing things and feeling better will happen incrementally, too. Unfortunately the snail's pace is pretty frustrating! Hang in there.
Hugs, sunshine! I've had those 2am moments a lot lately. I, too, wonder how people can work at "actual jobs" with this disease. The unpredictability of energy and pain levels alone can drive a person crazy. I'm glad your spirits have improved and you have ideas for moving forward!
Thanks nym! Hope you start having fewer 2am days as well! :)
nym said:
Hugs, sunshine! I've had those 2am moments a lot lately. I, too, wonder how people can work at "actual jobs" with this disease. The unpredictability of energy and pain levels alone can drive a person crazy. I'm glad your spirits have improved and you have ideas for moving forward!
HI Sunshine. Sorry to hear life is tough for you now. My friend is on double meds that I am on and is working, I am not. I get side effects, her not so much. We are all different. Your situation sounds worse than others, so please don't think you're not managing as you can't work full time. I couldn't volunteer 2 times a week for 4 hours. You do what's good for you, and within your limits. That may not be what others can do, as each of us has a different experience with PsA. Can you talk to your supervisor about extra breaks, easier station for typing, things like that? Thinking of you!!