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Living with Psoriatic Arthritis (PsA)

What a shock!


#21

You really do have a family filled with this… your mom, you, your husband, and now one child so far. I’m so sorry! :frowning:

It seems it’s a little different for everyone, and likely why it’s so hard to getting diagnosis pinned down easily.

My 30 year old son has an immune-mediated illness, and my grandmother had some form that had her stooped way over by the time she was 35. My mother has osteo.

Some of us get the genetic jackpot (like my husband!), some of us not so much!


#22

Ankylosing Spondylitis maybe? I’m always so sad when I think of what people in past generations had to live with. My grandmother had terrible knees and bowel issues (!), and my mother had joint issues and fatigue that was only explained after her death, when I was diagnosed. (So certain was my rheumatologist of my mother’s PsA that she included it in the research data.)
We are so fortunate to be living in a time when there are good treatments available, and more emerging all the time. And in my case, I’m lucky that total joint replacements are excellent and available. Having PsA is bad luck, but having relief available makes us so fortunate.


#23

Yes, and I have that diagnosis, too, but from my chiropractor.

My grandmother’s was enough that she lost her balance walking, stumbled, fell, and broke her neck and back at age 56. She lived to 78, bedfast, yet the fall prolonged her life as the stooping was starting to crush her organs.

She said it was RA as well as her dad’s and I remember how slow he was to get around some days. I don’t know that RF testing was available at their diagnoses though. Definitely inflammatory.

We ARE lucky! Modern testing and meds to hopefully keep us on the right track… once we realize we need to be on that track! :cherry_blossom:

Your stories inspire and give hope! :two_hearts:


#24

My dad had osteoporosis, so bad he was bent in half the last 12 years or so of his life…he had celiac disease, and weird “fungus” toenails that never responded to anti-fungals. He also had really dry skin on his legs and arms–so much so on his legs they always looked really white and flaky. He was never diagnosed with psoriasis or PsA, but in retrospect, I think maybe he had that on top of the celiac disease.

One thing, though, he never had inflammation–the only pain he ever mentioned was his round bony backbone developed an open sore about 2 years before he died. It hurt him so badly he took a thick piece of foam and cut a hole in it and when he sat he would use that foam with the hole where the open sore was. So sad–I’m sure the pain from it was nearly unbearable, but he never complained.

Sounds cheesy, but whenever I’m feeling sorry for myself (which is probably too often) I try to think of him and how he accepted everything. He had so many things wrong with him in the end and he toughed it out until the day before he died–autopsy showed he had lung and colon cancer and his esophagus was gangrenous. (Those were just the major things!) He weighed about 85 lbs. when he died, and some of that was water weight!

Amazing man he was! One of my most unforgettable characters–we all have a couple of those in our lives.


#25

Oh, this is so sad. Breaks my heart! It’s amazing how some people gracefully handle pain! It does put our own in perspective.

Also, thank you for sharing your cardiac history. We tend to think that women don’t get heart disease as young as men, and that’s just not true. My dads mother had a massive heart attack at age 55, my dad had his first at age 42, though he lived another 23 years. Neither had psoriasis but had other issues and they smoked.

Your story is a wake up call, and I can’t image how scared you must have been, and the concerns you still carry. You are aware and can monitor. Learning how insidious this really is getting me more proactive, too.

I’m so thankful we have a chance at a better life than what was offered in the past!

Hugs!


#26

Thank you, Sheila. :slightly_smiling_face:

There’s more to the story–I had written about it somewhere in a discussion. Actually, at first I wasn’t scared. Not until about 2 months afterwards. My heart doc put me on a statin and beta blocker (I had been taking a calcium channel blocker for about 12 years, and continue to take it).
Well, a couple months ago, after being on the statin about 14 months, I was at my wit’s end, the pain in my feet was ridiculous and my lower legs would get so sore and weak I basically couldn’t walk more than a couple hundred feet. We had gone to two different zoos last summer and both times I could hardly handle the walking, it was excruciating. I also had been having crying bouts, which is very unusual for me because I’ve never been depressed! I finally told my internist. I thought it was the statin because I had started researching SEs. Oh, and another thing, my left eye gets weak and I get double/blurred vision, especially when I’m tired. So I was tested for myasthenia gravis! It’s such a long story and I really shouldn’t waste your or anybody’s time talking about it again. So I’ll get to the point. That is, the statin was causing the depression and the pain in my feet and legs!!! My doctor switched me to a different cholesterol-lowering med and I don’t have such severe symptoms anymore. (Well, except my eyes are giving me trouble yet.)

I just like to tell people these things in case they have these same types of problems it might help to know what happened to me. I know tons of people on statins that don’t have any problems, but I’m a “lucky one” who can’t take them. My internist did say it’s not that uncommon to get those SEs from statins. (The one I took was Crestor.)

So many things to go wrong! Sybil has told me I’ve reached my quota for last year and this year and I can’t have any more health problems. I never would have thought all this stuff would happen to me. My parents were both so strong (mom being 92 and still very active!)…

Anyway, Sheila, I hope things are going better day by day for you! And, as far as your heart, with all your family history, I’d be really vigilant if I were you. I never, ever thought my heart would give me trouble! It sort of makes you wonder, what next???


#27

I half read parts here… Too tired to really read and respond… But I wonder if it’s a thing to praise/envy people for when they ignore their pain… my grandpa did that and never went to a doctor until it was way too late…

Pushing through until you can’t anymore and then still keep going until you eventually crash and burn isn’t something to be proud of… It’s the worst thing I ever did in my life…


#28

A post was split to a new topic: Hi, I’m NancyJ


#29

I so agree. But when it is just day by day, you just do it… I’m not proud of it myself. It has me in a terrible fix.
But also, it’s how some of us were raised, unfortunately.


#30

Isn’t it amazing how there’s so much more to the stories!
We think we have a grasp on one thing and something else pops up, seemingly unrelated, then we find the connection and puzzle pieces fall into place.

Until I started the methotrexate last week, I was pretty determined to start bio-identical hormones for menopause. Studies I’ve read lately seem to show that keeping a good balance of estrogen and progesterone (not the commercial meds, but compounded personalized creams) would help protect against heart disease past menopause, when women become more at risk. Now I’ve done a 190 in thinking, and don’t know what to think about how these meds might interact.

I’m so sorry you have had one thing after another. Even the most cheerful of people have the right to get down about health issues. It’s like the old saying, without health, not much else matters. It can be very frustrating and disheartening.

It is definitely time to be proactive.

Hugs! :two_hearts:


#31

It’s awful! I totally agree, but previous generations had no choice, other than to soldier on.

Pushing until I couldn’t any more, keeping going despite everything, discovering damage when it was way too late … no, I’m not proud of that either, Cynthia. In my case I did consult the doctor, but I was too trusting. Figured if she wasn’t worried, I wasn’t going to be either. Finally, I’ve learned to second guess. Ask questions. Compare what I’ve read with what the doc is saying. And I think learning the hard way has made me more aware of what is happening with my body, and more likely to persist until I’m satisfied that I’ve got the right answers.

Sounds like you’re getting there, Cynthia.


#32

Exactly. Back in their day, every day required a lot of physical labor—even if they didn’t have a “physical job”. I think their bodies were stronger in a lot of ways — I’m not saying we aren’t strong — I’m just saying they basically had a workout every day just with the day’s normal activities. We have automatic everything—our housework isn’t as challenging as theirs and I remember my dad not only had physical jobs, but he fixed everything that broke (except the TV).
I almost wonder if the lifestyle set them up to be stronger people in some ways. I admit my parents were stronger than me. They did soldier on…
I also wonder if there’s an increase in autoimmune disease? I remember reading 30 or so years ago that only 5% of psoriasis sufferers got PsA. Well, that % has increased! I think it’s at 30% now.


#33

I get that they didn’t have a choice… but we do… and we still learn “our” (as in all the children now) children that they need to “man up” and not to be a baby about things… And feeling like it’s something to admire if people just keep going…

I get that it’s not always an option to do anything else then just push through… but we shouldn’t be thinking “wow she’s so strong” we should be thinking “she’s really strong but she needs to look after herself” or whatever… not to shame that person!

There’s so many things “we” look up to that are completely the wrong things to praise… Like arrogant assholes that get everything done because they yell the loudest… it’s more important to be good at politics at work then to actually be good at your job!

People who point out what needs to change in a workplace to make more money for the boss get fired because they are annoying and it costs money to do those things…


#34

Yes I know that one in the workplace and sadly it’s very rife everywhere.


#35

You see stories … I recall someone, can’t even remember if it was a man or a woman, hawling themselves down a steep & snow-covered mountain to safety despite a broken leg or something. In such situations the ability to soldier on is a godsend.

And I guess on a day to day basis we have challenges that require the same approach even if on a less obviously heroic scale.

But with that kind of determination I’m sure the hero/ine of the story would proceed to make damn sure they got the leg fixed!

Let’s face it, we need the whole lot, every strategy for surviving & thriving going!


#36

:joy::joy: I’m sure that story is not about me - because I don’t think I’ve ever described it that way. But yes, I broke my leg on a ski slope, got helped down half walking on it, and was absolutely convinced that I was going to have a hot chocolate for morning tea, and go skiing again after that!

I still refused to believe there was anything serious going on (in the soldier on theme), and managed to send everybody in the ambulance before me to the doc (yes - the ski field was that organized - two ambulances a day, triage on arrival).

When I finally saw the doc, you should have seen the look on his face - he asked me if I could walk on it so I stood up and took a step “well I can, but it kind of feels like I’m being electrocuted through my foot”, meanwhile he’s shouting “don’t stand on it! Sit down!”

When he had an X-ray with a crack in the bone… I mean really, why ask​:joy::joy::joy::joy::joy:. He didn’t ask if it hurt, just if I could!

You are right, there is a level of soldiering on that really is helpful… then, there is one that is martyrdom/ stupid. There are days, particularly with PsA, where the line can be very fine - I think having a good quality of life with PsA probably requires a better-than-average understanding of that line :blush:


#37

Yes! This! And trial and error teaches us where that line is. Until the line moves. And that’s the beauty of having PsA :roll_eyes:


#38

thats the point though… its admireable when its a life threatening situation… i always answered the question “can you walk” by if i could walk out of the building if it was on fire, then i can do it now too…


#39

I also consulted a rheumatologist back in 1999/2000. Celebrex and Vioxx was newly approved. I got a pat on the head and told, here, take this, and was dismissed back to my family physician. I also agree that when your specialists don’t take it serious we tend to just go on and do what we must.

Also, we must take into account childhood conditioning. My mother downplayed every illness or injury I had. I had a broken arm for 3 days as a young teen, and she told me I deserved it for going skating. It wasn’t until my grandma saw it and pitched a fit that she took me and got it casted.

A child of a narcissistic/sociopath mother doesn’t take their own aches and pains very seriously. It’s hard to get past the invalidation and realize we are worth ‘the doctor’s time’.


#40

I think grandmas definitely see things through more sympathetic glasses than moms do…I’m a mom of 4 and a Grandma of 10 and I was pretty tough on my kids—well, the first 3. But those grandkids can do no wrong and I’m right there fussing over them any time they need the extra attention. I definitely wasn’t a narcissistic/sociopath, though—wow, how terrible you were treated that way! Did your mom change for the better once she got older and you were an adult?

It’s so painful to see little kids mistreated and disrespected…IDK how a parent could be so selfish.