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Living with Psoriatic Arthritis (PsA)

What a shock!


#41

I hear you SheilaM. Conditioning of that type, particularly as a child, can be very difficult to overcome. One of the things I’ve found can be helpful is to reach out to others that haven’t been conditioned that way (so a group like this can be great!).

When you tell your story, and people provide feedback on what the normal process and expectations should be, that helps to provide a calibration that can help counteract even lifelong conditioning, and it can be a huge benefit :grinning:

I also know that even then, at the start, feeling any sense of being entitled to appropriate care can still, internally, feel intensely wrong. But the more you do it, the more it’s starts to feel, well, normal. And eventually kinda nice :blush:


#42

Actually, she hasn’t changed. There’s so much more, but I’ve worked through most of it.

I chose to go no contact with her 14 years ago. It’s not something I generally share because so much judgement comes with it.

I had wonderful grandparents - that’s more than many children have. I loved them dearly. When I met my husband (I was 17) he was so much like my adored granddaddy that I knew he was the one! He and my grandparents hit it off immediately. Life is good except for a couple of blips here and there. Namely my mom and my aches and pains!

I couldn’t tell them what was happening under her threat of being moved 1,000 miles away from them. She told me to keep my mouth shut and I did. They were my safe haven many, many times and had no idea.

It’s all really crazy looking back, but a terrified child has no idea that their life isn’t normal when they’re living it.

I’m certain your grandchildren are very blessed having you for a grandmother. :heart:️Your care and empathy for others shines brightly through on every post you write. I can imagine your grandchildren have an abundance of love, as I’m sure your own children did/do, too. We all must correct our children in order to raise them to be productive members of society, plus give them a pattern to healthy-parent their own children. That’s normal and not abusive at all.

I never dreamed I’d get to this topic here… it is just a part of who I am and helps explanation why I didn’t take this more serious until I had so much joint involvement that I was forced to sit up and take notice. There’s no pride in any of it. It just is what it is.

So we go forward from here. I’ll take my 2nd methotrexate injection tomorrow and look forward to better days! :cherry_blossom:


#43

Yes, reading other’s stories here gives me validation, very much so!

Thank you for mentioning that! Every single response gives me hope as well, and knowledge that I may have been alone before, but not anymore.

I never dreamed the topic would come up. It just kind of evolved in response as to why some do push though. It’s not a pride thing at all.

I’m thrilled to be a part of such a lovely group! :two_hearts:


#44

Great advice from Jen!

I never know exactly how to put my thoughts in written form—my thoughts get ahead of me usually and I forget what I intended to say. But your remark was so kind, Sheila, and I appreciate it. I don’t like to see people suffer—I’m sure most people don’t—I wouldn’t do well as a nurse because I’d probably cry in front of the patients.

I bet you’re so thankful for your grandparents! What angels for you! And they sure must’ve done a good job because you are a very nice person. Sometimes hardships help mold us into stronger people—I know it sounds wrong, but I do think it a lot of times has a reverse effect. Unfortunately, some of the time kids that were abused end up awful as adults, and that’s really sad. That’s where it’s good to have loving grandparents or aunts and uncles—or any adult who gives kids the love they need if their parents don’t give it!

This IS a lovely group and everyone is so welcome here! I’m glad I stumbled upon this online about four years ago now—not sure where I’d be today if not for the great advice and support I’ve received here! Glad to have you aboard!


#45

And we’re thrilled that you joined us.

That’s really sad about your mother, and I totally get the need to put some distance between you and her. It’s interesting how we all end up at the same place, denying there’s a problem and buying into “nothing wrong” even when obviously something is, and we all get there by different routes. Cynthia and I are from stoic Dutch stock, and we were both brought up with a fear of “aanstellerij”, which the dictionary simply translates as “affectation”. But the untranslatable nuances include tinges of whingeing, whining, malingering, carrying on … you get the idea. In my childhood home, if we were truly visibly ill, we were very well cared for, but not coddled. You’re sick? Then go to bed. You want to play with some toys in bed? Aanstellerij! Nope, then you’re not so sick, go play outside. And that’s just the way it was. My mom used to say, “Can’t? You can’t? I don’t understand that word. Can’t is dead.” No point in saying “I can’t” either.

So when an authority figure (the doctor) says there’s nothing wrong with me that can’t be fixed with diet and exercise, then that’s the way it is. Then throw in a few good days every now and again when nothing felt wrong, and … see, the doctor’s right.

Like you, my pushing through wasn’t a pride thing at all.


#46

Omg “can’t is dead” “Kan niet ligt op het kerkhof en wil niet ligt ernaast” (can’t is lying in the graveyard and “don’t want to” is next to it… since un baptized people were burried next to the graveyard, not wanting to do things is meant to be extremely sinful…)

But I didn’t mean that I don’t understand where it comes from or why that’s the default… I’m just saying it’s not a good default to have…

I think they should teach something like mindfulness in schools so people know how to listen to their body…


#47

YES! This exactly!
Everything gets turned into a weight issue.
I lost over 100 pounds.
Still sick.

This body has lived at warp speed and has issues about 20 years before the normal population.

I’ve learned so much reading here though. Things that weren’t known or at least assimilated to have PsA connections just 18 years ago when I researched PsA for the first (and pretty much only time).

I’m working on putting together an anti-inflammatory diet, religiously taking anti-inflammatory supplements (ie turmeric tea, CoQ10, Omega 3,9…), requesting a cardiovascular evaluation, beginning safe exercises, looking at meditation for stress relief, and becoming proactive instead of reactive.

Thank you ALL so very much!
Even the question of why anyone would ignore and just push through was a good one. Bringing up WHY we do ignore our health helps me to validate, accept, and move forward.

:cherry_blossom:Sheila


#48

@SheilaM, where are you? Haven’t heard from you in ages!

Seenie


#49

Horrible to find out all of this at once, however, at least you know you are right, there is something wrong! Now the docs can get started making you feel better. Hypochondriac? NOPE!! You have a "real’ diagnosis now, when you don’t know what the problem is you certainly can’t make a plan to manage it. Hope you feel better soon!


#50

Thank you! :heart:
I’m around, just quiet.
Failing MTX, starting Enbrel. Added Gabapentin, and gearing up for our very busy summer tourist season.
Accepting this for what it is. Not so shocked anymore as the signs have been there since I was 16 years old.
Also helps that my husband is retiring early and since my starting meds, he’s been so helpful.


#51

I guess I’m actually still processing things.
I don’t post much since I’m still just learning so much myself. Here and elsewhere. This has consumed my life.
My job has become too much even though I’m PRN only; my husband is taking early retirement to be of more help to me.
Still looking at disability as my hands and feet are done for.
X-rays of SI joints and hands show damage but the radiologist misread my films and I’m working on figuring that out. I’d like more imaging, too, but rheumatologist says it’s enough for SS he thinks.
Most of all, I’m in a total brain fog.
Life is like a gameshow. I give hints of what I’m thinking and people have to guess what I’m trying to say because even though I know, the thought and the word doesn’t compute.
I faced that I’m in a situational depression but am on the upswing. I prefer to be joyful than so negative but this is where I’m at. It IS better. I used to teach a class for newly diagnosed diabetics. Our program including discussion on Elizabeth Kubler Ross and the Stages of Grief we go through on the loss of a loved one.
The loss of our health is a very similar grief though not quite as dramatic. I’m bouncing between several stages, but coming back to acceptance more and more.
And I feel like saying ‘I’ so much is so self-centered so it makes it difficult to post.
I do want to share some joyful news, and it’s just been a hard winter.
Spring colors will bring a happier outlook no doubt. :cherry_blossom:
Bless you for asking! :two_hearts:


#52

Hey Sheila,
Your positivity shines through, even through the fog and although ‘I’ may seem self centred, everybody’s journey is different. So ‘I’ is also affirming/ identifying acceptance of your own route. For many of us (including me) on Ben’s Friends that acceptance has been difficult. Identifying ownership is a big step imo, it took me years before finally accepting the reality of it all after bouncing back and forth. It was only through the sharing of others that I finally, begrudgingly, accepted my reality. I completely agree with the ‘stages of grief’ we go through too. In some ways it can be easier to accept the loss of a loved one as they have gone, where our conditions can be a constant reminder.

Although I understand your desire to ‘share some joyful news’ sharing the bad also helps others to know they are not alone with their battles and that too can be positive. I hope that makes sense.

Merl from Moderator Support


#53

You’ve hit the nail in the head as regards liking the whole thing to a grief process. I felt like that initially. And grief is self centred almost by definition isn’t it? Big cyber hugs. We do get that, honestly we do.


#54

You didn’t fail MTX. Methotrexate failed you, and it may be the best thing that’s happened to you in a long time. Without getting your hopes up too high, the biologics have a much, much better track record than the conventional DMARDs. And for me, disappearing brain fog was the first sign that Enbrel was starting to work. I remember it so clearly: I started getting these little surges of energy, and flashes of clarity like when the sun comes out from under the clouds. Neither lasted very long, but the bursts got more frequent and closer together, and that kept me going until my joints responded many months later. Fingers crossed for you, Sheila!

I’m glad that you’re OK. When people come here in a state (and you were!) and then disappear, I worry.

Happy to hear from you!


#55

Hi Sheila. I often read things I’ve thought myself but haven’t been able to articulate and this is one of them:

This disease can be devastating. Desperately important as joints are, there is so much more to it. The fatigue and brain fog that go with very active disease can be awful. In fact I don’t think either term really nails that near-zombie state of being. When I was feeling that way, it lasted nearly 2 years I guess, the ‘I’ was hard to find but most sentences were probably peppered with it.

You’ve got such great self-knowledge and when you’re busy drawing on that to keep afloat, you just have to focus on the ‘I’.

I notice you say you’ve lost a lot of weight. That happened to me too when PsA was uncontrolled or poorly controlled. It makes you feel as if your body is seriously under attack.
I can remember feeling ‘intellectually challenged’ to put it mildly. I can remember spending day after day on the sofa, planning important stuff like how to get to the toilet. I wish I could forget it all really but at least it makes me appreciate how different things are now.

I think starting Enbrel may well make a considerable difference. I know we shouldn’t get your hopes up too soon but I just want to emphasise that how you are feeling at the moment is unlikely to last … I think it is fair to say that. At some point - hopefully very soon - you are likely to respond well to treatment and the chances are the clouds will clear.


#56

Thank you all!
Everyone here is so sweet, kind, and friendly. PsA family spread across the world!
I treasure EACH and EVERY reply, the PERSON behind them, and read them numerous times.
My doctor gave me a steroid shot yesterday… oh my, this body could become addicted to days like today! Pain reduced by 1/2 at least - more than I’ve had in at least 20 years. She has lupus and understands the whole autoimmune thing! She’s given up on much helping her except steroids, but certainly doesn’t recommend it often for me. But it’s nice she recognized a need I had for it as I go from just MTX to the MTX and Enbrel.
I hope everyone has a blessed weekend. While I may not be up for square-dancing (does anyone even do that anymore?) I may feel like dragging my husband out for dinner and a movie!
:heart:


#57

I can’t back this up, but I’ve heard that steroid shots can help kick-start some improvement. Well at least they get us moving and that alone can have a knock-on effect. Well whether that is true or not … have a great weekend!


#58

Sheila … paging Sheila!

How are you now? I hope you got through the campground season!


#59

Thank you for sharing, your story has many points in common with mine, it is important to see it in writing. I share the feeling of shame for disability fining, the only thought is to try and enjoy the moments. A hug,