Me too :-)!
Sybil said:
Lol!! Personally I agree with you about everything!
MacMac said:I just noticed my post looks like I drink wine to escape fear...oops unintended. Truth is I try hard to stick to the recommended limits relevant to my meds. I was trying to convey that humour helps me alot. So too does grabing hold of the wonderful things I have got...family, friends, study, work, movies, books and, very occasionally a glass of wine :-)
Count me in with the agreers, well, except for the wine. When my rheumy said I could have a rare glass of wine, I asked if that meant a rare Amaretto or Laphroaig. He said a rare glass of wine. Sigh.
I don't know that I've said it to y'all but I decided last year that I was going to live life the way Paul does--concentrate on the few things really important to me/us--and let go of the rest. That means I frankly don't give a damn what my boss says any more because doing what I need for my health, for me, doesn't take away from the fact that I'm a pretty damn good lawyer and a heck of a writer.
Paul says I'm finally realizing that while PsA is part of who I am, it doesn't define me as a person and I'm finding my voice as someone whose life includes PsA but whose life isn't over because of it. The man knows me entirely too well. I have so much good in my life: Paul, the funniest man I've ever met; the relationship we share; good friends, a job I love (mostly), good books, good music. After so long, I can finally look at it as the bad (PsA) showing me just how good the good is--
Well said! And I too would be there with the whisky.
sixcatlawyer said:
Count me in with the agreers, well, except for the wine. When my rheumy said I could have a rare glass of wine, I asked if that meant a rare Amaretto or Laphroaig. He said a rare glass of wine. Sigh.
I don't know that I've said it to y'all but I decided last year that I was going to live life the way Paul does--concentrate on the few things really important to me/us--and let go of the rest. That means I frankly don't give a damn what my boss says any more because doing what I need for my health, for me, doesn't take away from the fact that I'm a pretty damn good lawyer and a heck of a writer.
Paul says I'm finally realizing that while PsA is part of who I am, it doesn't define me as a person and I'm finding my voice as someone whose life includes PsA but whose life isn't over because of it. The man knows me entirely too well. I have so much good in my life: Paul, the funniest man I've ever met; the relationship we share; good friends, a job I love (mostly), good books, good music. After so long, I can finally look at it as the bad (PsA) showing me just how good the good is--
I just wanted to thank you all so much for this discussion. The question that was posed was exactly the one I was contemplating. I am newly diagnosed this past week. I have had ankle/foot/ wrist/elbow/hand/neck issues going on for 9 months. Thank you, thank you for this site and the information.
Gonzo, I can safely say, as a veteran of PsA for 35 years, I have seen and done it all. I began with Gold Injections weekly, have been on every Biologic out there and have been on Remicade Infusions for the lat 5 years. When I was diagnosed my Rheumatologist told me I would be disabled in about 2 years time. I was a Nurse and worked for 20 years in Critical Care , 5 years after being diagnosed. I had to rethink my career and became a Human Resources Executive for the next 20 years. FINALLY the disease caught up with me and I went to disability 7 years ago. My point is, we just don't know what is going to happen. I have been on muscle relaxers, anti-inflammatories, steroids, you name it. Everything runs its course. The side effects caused gastric ulcers, arrthymias, mouth sores, the works. The last self-injection I was on was Humira and it worked well for many years. When I went to disability,after 2 years it transferred automatically t early Medicare (USA.) I had to stop Humira as Medicare doesn't approve self-injections, other than for diabetics. So I had no choice but to go on Infusions. It has been great some times, and no effect at all other times. To this day I struggle most of the time and needed knee replacements but hanging in there with cortisone injections for now.
When I feel good (had a great few months this past summer) I can do anything ! When I flare up I am not good to be around. I go in to a shell and a depression and want to do nothing. I hate to sound like Debbie Downer here but this is me, going in to year 36 and I get so tired of pain. My hat is off to the people here with such good outlooks.
The upside is, I am still here, walking, sometime with the aide of a cane, and even power walking at a local fitness center when the disease is in check. I truly wish I could be as positive as so many here but wanted to give you facts from a veteran here. it is all in how much support you have and how YOU can handle it all. Best of luck in your journey !
Erinsmum, I don’t think you are a Debbie Downer at all. Despite your longstanding disease, you have adapted, reinvented yourself, continued to work and be active for more than three decades. When you were diagnosed thirty-six years ago, there were no biologics, which have proven to be far more effective than anything else that has ever been prescribed. To me, you’re still here to tell it like it is and to dispense great advice. That in itself is a triumph. As you say, it’s all in how much support you have, and how you can handle it all. You clearly have built a great support network for yourself, and you have the drive and the determination to have handled PsA as long as you have. Our veterans here play an important role in keeping things real and in perspective.
The trajectory of PsA for someone diagnosed in this century is vastly different from what it would have been in the days before biologics, and the PsA treatment landscape is bound to change dramatically before this decade is out, so there’s no telling how our individual PsA stories will play out.
As moderator Janeatiu said a few days ago, there is no new normal. There is only today. And it sounds as if you have made the very best of your todays. Thanks for bringing us the veteran’s view. Don’t stay away so long next time!
It's been awhile since I've posted anything but reading through GonzoPsA's discussion on "What is the typical progression of PSA" really hit home for me. I've tried to research as much as I could so I could get a handle on where I will be in a few years but nothing really seems predictable. I thought I was doing really well on my meds and was managing pretty well (methotrexate, meloxicam, folic acid since 2011). I'm 56 and it seems like all of a sudden I'm having lots of pain in my feet and legs and just feel exhausted. I too, am a firm believer in trying to exercise as much as possible but this last week scared me. I took the dog for a walk and got about 45 minutes in and the pain in my right foot got so bad, I was playing out in my mind how I would direct someone to find me out on the trail. It actually made me laugh out loud and after crying for a second, I decided to power on through and make it back to the car. I'm trying to laugh as much as possible and look at all the positive things that I can still do. Anyway, I'm hoping I'm just having a flare up. Do any of you find yourself holding in your feelings from your loved ones? I find myself always saying "I'm fine" when they see me struggling because I don't want them worrying about me. I haven't told anyone about me almost not being able to make it back from my walk on the trail last week. I am trying to take it one day at a time but when doing just normal daily activities become so difficult I have been slipping into a little bit of a "pity party" and start panicking that I won't be able to work and pay our bills. Anyway, thanks for the discussion. It really helps to hear what others are experiencing and knowing that I'm not alone.
Thanks
Tom
Hi Tom,
You asked whether others hold their feelings in from their loved ones, and my guess is that probably happens a lot. I know I certainly do. You and I sound like we are in a similar boat (having a similar presentation of disease, being nearly the same age, and roughly on the same meds). In my case, I'm in a new relationship (3 years) and *really* want to be able to keep up with my partner in doing the things that attracted us to each other in the first place (hiking, biking, etc.). I'm finding myself *extremely* disappointed in myself when I can't. My partner is perfectly understanding, but I just can't muster the courage to say, "I'm really feeling horrible today, and need to change our plans". Instead, I try to participate, but end up being horrible company, because I have a great deal of trouble speaking and carrying on conversation when I'm in the midst of a flair, and my partner assumes I'm frustrated by something she has done. She keeps reminding me that this misunderstanding could completely be avoided if I could just be more up front with how I am feeling, but I continue to struggle to admit it. I think I fear that if I say anything, I'll simply be avoided. Or it might also be that after several days of feeling worse and worse, it becomes 'normal' in way, and I don't even realize just how poor I feel relative to my baseline. I totally recognize that I need some way to keep her posted on how I am really doing, but it's surprisingly difficult to do that in an accurate way. I'd be really interested in hearing how others communicate with their loved ones about how they are doing.
GonzoPsA, thanks. I'm still trying to figure out how to communicate effectively to my family on how I'm doing. I guess I'm afraid to appear weak and boring. I've got a million things I should be doing but sometimes, I just have to sit and not do anything because I'm feeling bad.