That’s such an odd thing to say. Your supervisor has never taken meds of any sort? No antibiotics? Nothing? I’m not sure what i would have said to the supervisor after the initial query.
Personally, my life is far more worth living because of biologics and disease modifying meds.
Of course he was an a** or speaking in sarcasm as was I. Sorry I didn’t make it clear.
But yeah speaking of support I too have my moments. I’m having one now. Latest news is not good and am not sure how much fight I have left…
No problem, it has been one of those days for me…
sorry to hear that your are in such a sick state, hope you spring out of it.
More misunderstanding today with my coworkers, that think I am just faking it, because I like to sleep all day. I am having a meeting with them about it tomorrow. Pretty expensive way to get out of work! It does get old, when you have to explain the condition every month to them, then they ask what is wrong? And you say “remember, I have a chronic disease, that means it does not get better.”
My old boss did worse then this, I thought I had worked it out so it did not bother me, it has been 5 years since I was with him, but it all came rushing back.
I would discribe him as a racist bigoted redneck type, kind that lives on bowls of Cheerios and thinks it is “manly” not to go to the doctor, but just “stick it out”, Very little compassion for others.
Oh that’s just lovely. It sounds like you’ve had some really wonderful supervisors. I typically work independently, so have little contact with my supervisor as long as my work is getting done. It is clearly more challenging to work in an office setting or shared workplace of some sort. I forget that I’m a bit spoiled that way.
Sometimes I think it should be renamed. Those who don’t have a clue what PsA is, they just smile and say things like, “EVERYONE has arthritis”. Arthritis is a very general term that society uses to describe joint pain…regardless the cause. So, maybe a new, real scary name would help! ;).
Did I say I wish I was back on NJ? WellI made the trip back, 3 kitties with me. Only to discover I have cataracts in both eyes. The right eye is the problem, have an appointment to have it removed 5/8. No accidents on way back.
I know about the problem with the spouse not caring, or appears not to. Wife ignores me. She had a knee replaced in February and just to be an azz I kept up with how often I asked her how her knee was doing. I asked her several times a day every day for two months, she never asked how I was doing. I think she knew better than try and get any sympathy/empathy from me, but I took care of her aches and pains.
The people I work with ask me how I am doing almost daily. They see me struggling to walk around the office and know I am in terrible pain.
I don’t know, I guess the wife is tired of hearing about it, I would be. But, it would be nice if she appeared to be concerned.
Welcome back to the northeast @caryle!
I’m dealing with cataracts too. Need to wait until my next appt in June to make a lot of noise and schedule for cataract removal. Mine are a combo of inflammation and steroids that caused them.
I hope the cats are keeping your good company. We just went up to 4 cats a month ago, a foster failure. She’s a solid black, almost two year old short hair. Total doll!
Sorry for the long post, if you want you can skip to the bottom for suggestions…
Had a little breakthrough with the understanding about my disease, I have lived in a monastery for 32 years, everyone keeps to themselves, we are not supposed to discuss our medical conditions, only with our councilor, this happened to also be my work supervisor, and administrator. I have been telling him about my condition for the last 3 years, turns out, he did not even know What condition I have! Came to a head, when he tried to get me thrown out, we met with personel, to discuss my “negativity”, I had already contacted Personel confidentially months before, then I had a feeling this was coming down, so they were aware of my condition and struggles with deadlines and chronic fatigue, pain etc.
My supervisor councilor was pushing me to do more, and disregarding my disease, add to this, I have been dealing with mental problems from the pain and not being able to keep up with the schedule and deadlines.
Anyway, he was surprised when he found out I had more going on then “just” chronic fatigue. What I did was send him quotes describing how PsA feels “having your own body consume you” etc. So I think he gets the picture now, and is backing off. Not to mention the early “smoldering non Hodgkins Lymphoma, polyneuropathy, hypothyroidism, Raynaud’s etc. Didn’t want to even get into that, they have trouble remembering PsA problems!
So that might be a good idea, to find descriptions of what the disease is like from regular people, helps them to get a idea what we are going through.
Tough though, Jon to have to go through that given you’ve lived there for 32 years. I’ve a great boss but thankfully don’t have to live with him 
. Indeed I rarely see him since I presently work from home so much.
What helped him ‘get’ my PsA was him doing a google search on the meds I take. That shocked the pants off him, first what the meds were trying to do and secondly the potential side effects of them. And whilst he was doing a good job up till then, he’s doing an even better job now.
He was also astonished how much these drugs cost the NHS to give me and the hoops I had to go through to be prescribed them. And he’s utterly fascinated I keep that amount of ‘money’ in my fridge in a tubberware box in the middle shelf not touching the sides. I get a delivery of 8 weeks worth at time and that freaks him out.
Good point on the meds, the cost becomes surreal to us, (mainly because we are not paying full price for it) retailing at $10,000 every 6 weeks for the Remicade infusions! This is what the cash price is, that is how I convinced them to pay for insurance, as we usually pay cash for medical, as it is a lot cheaper then buying insurance for 300 people, who for the most part are healthy.
BTW I just sent them this blog: https://psoriatic-arthritis.com/living/emotional-impact-physical-pain/?utm_source=weekly&utm_medium=email&utm_campaign=d0d60285-cfd7-4091-a729-6bcbed2bad48&utm_confid=sovjr5mab&aGVhbHRoIHVuaW9uIGJsYWg=feaad60e2d9a903d8cefd0a142c12d9c3e66483e97faea8807fd01c0a0e28011
Here is a quote from the article:
“When I am dealing with high levels of pain whether it is from psoriatic arthritis or another one of my chronic illnesses, I am not myself. I have to wear a “mask,” because if people really saw how I felt, they would run for the hills. I shield them with a fake smile and phony laugh when inside all I want to do is scream and cry.”
The blog goes on about fits of rage from a chronic pain sufferer, not that my outbursts were mainly from pain, but it did play a role in the stress triggering the rage. For me it is probably ADD type 3, “The over-focused”, caused by lack of serotonin and dopamine, might explain why Norco gives me focus and acts like a stimulant. It can be Dx’d with a PET Scan, but if you have been reading my posts it is fairly a slam dunk! That is why I am so hard on the doctors and pharmacies, like when I went to pick up my Tramadol Rx, that I had called in the previous Thursday, instead of using the refill prescription, they pulled the Rx my doctor had sent, with “do not fill until May”, and refused to fill the prescription, saying “we cannot fill this until May, when I explained I had a refill on the previous script, they looked at me like I had grown another nose… (idiots) 
Took me a hour to fill the script, having to call the doctor and have him change the date, when I got home, and saw the bottle had another month, I called them back, in a “fit of rage”… 
I’m a ‘lasher out’ personality type just anyway. Overly assertive at times. But in the throes of the uncontrolled pain of PsA, I certainly hid away, never answered the phone or responded to anyone much at all.
Actually it was joining this forum that got me communicating more and doing it more agreeably too. That and the fact at the same time I was dealing with a young puppy who needed me to able to look after him properly and help him learn how to deal with the world so he loved it and it loved him.
AAlso called “Over-focused”, I like the “lasher out” better. We have the biggest “lasher out” events during the Christmas season! Last year, I just took a retreat two weeks before Christmas, no presents for anyone, just slept in! Christmas is a big deal in the monastery, a lot of events, but always the same, so it was nice to skip it. Any deadline stress will flare the ADD. Those poor receptionists and ladies at the pharmacy, and 90 year old drivers on a two lane road! I suddenly become “Mad Max” “Escape from Thunderdome”…
When it gets like this, you have to have seclusion and time to suss it all out. Online groups like this are the best for support and fairly safe venting.
BTW two of our 3 cats at the farm died today, leaving only Buster. One from old age, the other from a absessed tooth infection.
Oh poor kitties. That’s so sad. I loved your most recent picture of Buster. He’s looking good.
My two cats died of old age one last summer and one the previous summer. But not before they totally dominated the puppy. They’d gang up on him and then beat him up. He remains very wary of cats consequently. I miss them lots, though. I miss seeing how cats deal with the world. I love their attitude to life just generally. Sassy, opinionated and everything mostly is on their terms. Never fails to make me smile.
I will get more sometime. But thought the dog needed the break for now.
I am sitting at my desk (at work) crying as I read this. YES! YES! YES! Someone else understands.
I am so weary of everything hurting. I’m weary of limping and walking like I’m a hundred years old! I hate that I gain so much weight because I can’t exercise like I should. I hate that NAP is my favorite word and all I want to do when I get home from work is fall apart. I hate the look on my husband’s face when I say that I hurt too badly to walk the dogs or do the housework.
All this to say Thank YOU for voicing my feelings.
Praying you and all of us feel better!
So where are you at on the meds regime now? I assume you’ve moved on besides just taking mxt? I so hope so.
This is interesting Jon. I feel the pull to seclusion when dealing with my health state. I have a family so I do enjoy being with them and find overall that I am happier when engaging my close relationships. However, that does not include public spaces with lots of people. I become uncomfortable around others particularly when doing worse than normal. It is like dropping everything for self preservation.
What s up? Hope you are getting along and progressing w fixing whatever it is.
