It's just anxiety, @lizardlady ... I overthink things sometimes.

It's only four parts here ...

The actual request I complete, then my employer does parts II & III (job description and duties), and my doctor does part IV.

I've done my part, my supervisors (that support me & my request 100%) are working on their part, and I'm dropping part IV by my doctor's office this week.

I'm also worried that if it does turn out to be psoriatic arthritis if the diagnosis is coming too late to do anything about it.

We could've been treating it all this time and it not gotten to the point it is now.

Kinda makes me sad, but one thing's for sure, I'm a tough cookie and shall persevere!

Certainly appreciate yours and @~Christina's support too!

[sarahsweets]

So I had rotator cuff surgery on the right shoulder in March and I have to have it on the left September 20th! I injured them both at the same time but the right one was worse. I followed all the directions and I swear, it was the easiest surgery I have ever had. People had all sorts of horror stories about it but it was a cinch for me because i listened to the doc instead of playing the doc.

If this does end up being Psoriatic Arthritis (PsA), I'm wondering if the diagnosis has come too late for treatment to be of much benefit.

Been trying to piece together a timeline and I can remember noticing the first spots back in the mid 90's and wondering what they were.

I was in my mid 30's at that time, had no health insurance and only went to ER if really, really sick.

Of course back then I would only see one or two spots (about the size of a nickle, dime or quarter) pop up throughout the year.

Then as time progressed it would be three or four going on at the same time on random locations all over my body & more frequently throught the year.

The pain started about 10 years later and has progressively gotten worse since then, but I had no clue it may be connected to those spots on my skin.

I'm almost 60 and the last time I can remember being relatively pain free was back when I was 48 years old!

Since then it's all gone downhill so fast - especially these last 2-3 years.

If it is PsA, that means I've gone nearly 25 years without diagnosis and treatment.

[~Christina]

Treatment for my PsA is to prevent further degeneration and damage.

But honestly Enbrel was offering me some decrease in pain.

I hope Humira works well for me.

PsA causes the inflammation rate in your body to increase from a normal range so everything is going to hurt more, at least that’s how it works for me. If my numbers are staying lower I have less PsA pain daily.

Right now my rate is way up, my rheumatologist said Humira typically works faster than Enbrel does, I’m holding out hope that Humira works well.

[lizardlady]

Just need to whinge.... I hurt and I'm exhausted....

[~Christina]

Gentle hugs Liz

Thanks for that information @~Christina, fingers x'd that the Humira works for you too.

I kept turning that exact thought over in my head yesterday that we (my treatment team and I) may not be able to do anything about the damage already done, but at least we can slow down and/or prevent further progression.

I'm still a bit sad (and angry) about how my other doctor (the one that quit) could have missed all this, but then I think I don't need to feed into that because I will need all the energy I've got to battle what lies before me!

Sorry you are hurting and are exhausted on top of that @lizardlady - as if the pain isn't enough!

[lizardlady]

more whinging....

Pain is causing me to clench my jaws. I don't even realize I'm doing it until my jaws start to ache.

The emotional side of fibro is kicking in too. My emotions are all over the board. I'm ready to cry over absolutely nothing. Gawd almighty I hate this.

I'm tired of trying to be and do what I'm not able to be and do anymore!

But instead of it being Elvis has left the building, it's Wonder Woman has left this body!

[~Christina]

I really struggle with how physically I am going downhill. Yeah I’m getting things checked out , but I think nothing will be found. So I’ll just feel like “ this” forever ??

I’m so discouraged between Bipolar PsA , Fibromyalgia and whatever the hell else is going on.

Today I just give up.

Maybe wonder woman will come back to you soon

yesterday was the worst it's been in quite sometime

I litirally sat their, stiff as a board, almost in tears (my leg went dead too which wasn't fun)

not in as much pain today but it is still a lot more than usual

which I have to say is odd... I have done nothing too physical to warrant it (though I did shower friday, takes me ages to recover from that)

That's what scares me most @~Christina ... That "this" is my new forever ... It makes me sad.

I'm also gobsmacked at how much the different medications cost to treat all these things!

Trying to not get too far ahead of myself as I haven't even seen the Rheumatologist yet, but ...

In my heart, I know it's most likely PsA with a dose of Fibro on the side perhaps.

How the heck did my previous PCP of 10 years miss something like this?

Still sad and angry over that too!



Here's a gentle hug for all of us ... ... May we one day recall what it was like to not be in pain!

[lizardlady]

(*(*(*(*Christjna*)*)*)*)

(*(*(*(*pfrog*)*)*)*)

(*(*(*(*raging vortex*)*)*)*)

It seems we are all struggling lately.

Pfrog, I hear you about one more effing diagnosis and docs missing it for years. For years I was told my pain and exhaustion was all in my head. Used to make me want to punch the doctor, then tell them they pain was all in their head.

Christina, I wish I could tell you it will get better, but we both know that might not be true. Could you be having a flare right now? They eventually fade, even if it takes ten forevers.

I'm so friggin' sore today I don't want to move, but I know some gentle movement will help. Am so exhausted I keep dosing off here on the sofa.

Sorry, not being very positive today. Not feeling positive right now.

@lizardlady ... I laughed out loud when you said punch them in the head ... Thanks, I needed a good laugh!

It would have served them right though, right?

Did you say you are still working but near retirement?

I've got 22 months to go and I'll be vested with my employer ... Hoping I can make it that far ... And, if I do, it will only be another 4 until I can retire with social security and medicare.

Pfroggy Pfinger's X'd ...

I may not be able to keep doing what I do now, but with the ADA paperwork in place, I will have job security regardless - even if it is counting beans in a corner!

My doctor left me a note on the patient portal that I can pick up her portion of the ADA Request tomorrow so I'm gonna be there first thing.

Then I'm gonna go make 4 copies (for me and my supervisors), and then I'm considering hand delivering it to HR instead of waiting until Tuesday's Interdepartmental Mail pick-up.

I've took the last 2.5 days off because I'm so overwhelmed right now!

I hate that we are all suffering with pain like this ... How sweet it would be to have just one day pain free!

Alas ...

[lizardlady]

Yep, nine more months and I'll be at full retirement age for social security. I have to sell my mother's house before I can retire though. I can't support both places on the pittance I'll get from SS.

Originally Posted by lizardlady

(*(*(*(*Christjna*)*)*)*)

(*(*(*(*pfrog*)*)*)*)

(*(*(*(*raging vortex*)*)*)*)

It seems we are all struggling lately.

Pfrog, I hear you about one more effing diagnosis and docs missing it for years. For years I was told my pain and exhaustion was all in my head. Used to make me want to punch the doctor, then tell them they pain was all in their head.

Christina, I wish I could tell you it will get better, but we both know that might not be true. Could you be having a flare right now? They eventually fade, even if it takes ten forevers.

I'm so friggin' sore today I don't want to move, but I know some gentle movement will help. Am so exhausted I keep dosing off here on the sofa.

Sorry, not being very positive today. Not feeling positive right now.

thanks for the hugs

they are apreciated

I just ate some food. I'm glad I managed to eat something, as I 've had an icky tummy all day

Sorry to hear that you gotta sell your Mom's place @lizardlady ... Especially if there's a lot of good, fond memories there!

I'm hoping I'll be able to stay where I'm at when I reach retirement.

Not thrilled at the idea of having to move into some "senior" type living facility - independent or not!

In Pain ... Came Home ... Going To Bed!

[lizardlady]

Me too pfrog.

[~Christina]

Well my entire body is aching severely m, my muscles , joints and bones are just burning , feels like skin being ripped off. ‘Tis the season I guess since we are all feeling like crap.

Pfrog ! I found a post you made about providers access and students last night but the site went down and I wasn’t able to reply and now I can’t find it lol

So what I was saying is you have every right to decide who you will receive Care from and who is allowed in the room , sure Doctors like to let students learn but you don’t have to allow it.

Hi Dr X

I know you have students but due to previous trauma and PTSD ( no you do not have to explain any of that) I’d prefer just to work with you and not have students in the room , that’s okay with you right ! Just smile then

I have works for loads of Doctors many who allow student rotation and never once has a Doctor not respected a patients wish’s.

Now when I first saw my Rhuemtologist he had me in a gown so he could not only feel each joint but physically watch them rotate and extend. His nurse was in the room with us , same as like a gyn appt

Keep being pro active !!

Sorry we're all feeling like we've been put through the grinder!

I am feeling a little better this morning after resting up a bit, but it's sad to know that this stuff is gonna last forever!

Do either of you ever feel extremely cold when having a flare ... Like chilled to the marrow of your bones and find it difficult to get warm?

Here's that link @~Christina ...

RE: Complex PTSD & Physical Healthcare Issues ...

I'm so afraid if I strike out and initial those parts on the consent form before signing it that they'll refuse to treat me ...

I'm definitely not going to accept financial responsibility should they use anyone or anything that's not "in-network" on my insurance plan.

That practice is also known as "surprise medical billing" and It ought to be illegal for them to do that anyhow. It's certainly unconscionable IMHO.

Those huge medical conglomerates can afford to absorb those costs better than most of their patients can.

Not all of us afflicted with these chronic pain disorders are rich golfers and actresses that can afford such nonsense as part of their treatment plan!

[lizardlady]

The school where I'm based for work moved my "office" to an unused classroom w-a-y far away from the other people I deal with during the day. Which means a long walk for me every time I need to meet with someone. Today required multiple trips up to the front office. My knees and hips are so sore I was hobbling by the time I left for the day.

I can hear you asking why I don't say something to the powers that be. It wouldn't do any good. I am being targeted by the powers that be. They are trying to force me out the door. If I complain they will just kick me out.

Y'all remember the mean girls in school? These are the mean girls, only older. They are nasty, catty, back stabbing Queen Bs who treat people who are not part of their in group like shyte. I hated this crap when I was in school. I hate it even more as an adult. We adults are supposed to be role models for the kids. This is NOT what they ought to be modeling.

The stress of dealing with this crap is killing me.

[lizardlady]

Pfrog, yes some times during a flare I just can not get warm. It'll be 90 something degrees and I'll be bundled up in my big fluffy winter robe.

Oh!, @lizardlady! ... I hate that you are being treated like this at work ...

It's like they know the energy to fight their vileness is just not something those with disability issues can muster and take on.

I, too, have observed how the ADA provisions get manipulated and used against those they are supposed to protect.

That, too, is unconscionable!

I so hope you can hold out until retirement!

in quite a bit of fibro pain. have been since monday

still, trying to make an effert to get things done (things that don't require too much movement, alexa quiz, eat, etc)

kinda depressed though- jus been another **** week to put it bluntly