I bit down in the dump and not sure what to do

General
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I guess some of it is the holidays and losing my mom in October, but the pain is really getting me down.

I had to stop PT because it set up terrible back pain that is still on me. I got a steroid shot about three weeks ago and it help for a few weeks, but now all the pain is back. I am at a place I am sure many of you have been. I wonder is it something other than PsA. How is all this stress and pain going to affect my life expectancy? What else can I do, if anything… and on and on.

For the last few months, I have been under a lot of stress. My wife and I are not getting along well and it is really creating immense pain. Every time she argues with me the pain doubles within 5 minutes.

My feelings are that she doesn’t care and really doesn’t understand all the pain I am in. There are a lot of other issues that I am tired of dealing with from her. The biggest being she does nothing to clean the house and hasn’t for about 5 years now. She never has been a good housekeeper but I am living in a dump. I try as much as I can to pick up and clean some, but I just can’t do it anymore. When I struggle to try and clean, she just sits on the sofa and plays on facebook. For a 63-year-old person to be doing that is ridiculous and I am fed up with it.

Several times in the middle of the night I have almost gotten in my truck and just start driving. My brother has offered for me to come live with him if I need a break and I think that is about to happen. I am on the brink of the next time she leaves the house for several hours to pack up my stuff, go to the bank and withdraw all the money, and just start driving and let her have the house and all the trash.

I spend my time trying to figure out if I could live on my own. If I divorce my wife our house would have to be sold. It is so trashed up right now, someone would have to spend a long time attempting to clean it up so it could be sold. I have a 1200 square foot basement that is 95% filled with junk and trash from my wife. I wouldn’t be successful in kicking her out, so the alternative would be for a judge to decide it would be sold.

I don’t know what to do. She yelled at me the other night (which she does all the time) when I asked her something, and I told her to stop yelling at me when I asked her something. She then yelled at me that she wasn’t yelling at me. Every time she says anything to me it is either condescending or a smart ass comment. I can’t deal with it anymore. I have told my brother that I feel that living here and with her is actually going to kill me eventually. The stress is so bad that my heart is beginning to act up.

All the pain and this situation is more than I think I can deal with anymore. I sit and try to understand all the pain and how I can deal with it. Now I realize that the source of much of my pain is sitting across the room from me.

Sorry for venting, but I have no place to turn to vent. My psychiatrist is telling me something has to be done, but I don’t think attempting to work things out with her is a reality.

Have any of you ever thought you needed to just pack up and leave? How did you deal with it?

I can still work from home and will until further notice. I can retire anytime I want, but I would need to be able o draw disability also. Even then, I am not sure I could make it on my own with the monthly income I would receive. I have even thought of moving to someplace like Costa Rica where I could live cheap.
My psychiatrist told me they had the best choice for health care.

Someone give me some advice.

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@tamac I’m sorry things are like this for you. I really feel for you.

This situation with your wife sounds like it has been slowly getting worse for years now. I can’t really give you advice on what to do, but I can tell you what I did and how it panned out.

I found myself in a situation that was slowly getting worse with my husband. It was not the same as yours, and by the time I left, I felt I had to for mine and my daughters safety. But before that, I went through a process of trying to modify just about everything else in my life to fix “me”, as if I and my disease were the problem. When I could look back honestly and see that I had done everything I could do and put all my resources to it, only to be repeatedly gaslit and sabotaged, and I knew that there was nothing else I had control over that I could do, I was ready to leave. I had to be really honest though, and admit that there is a lot I don’t have control over - including how he felt.

Once I left, making sure I did take enough cash to get housing, I was surprised at how well I managed. I first lived with my sister, then was able to organise a place (there was a lot of persistence required). I realised his poor choices had made me think it would be a lot harder than it was. I did less housework for me and one six year old than before with two adults and one six year old.

On the relationship front, things got much worse and more stressful and remained that way for at least 3 years. But I felt safe in my house and could not be randomly set upon at any time, so slowly my stress levels dropped a little. Eventually (about 6 years on), that relationship is relatively “normal” as we converse as required about our daughter.

Disease-wise, you have probably noticed things have not been all rosy in my quarter for the last 6 years! I would particularly say that over 2020, despite coronavirus, I’ve been successfully developing my business and bought a house. I had no real stresses and a great relationship with my daughter. But it seems that it all caught up with me anyway, and I’ve been hit with successive flares and new disease of Crohn’s, vasculitis, myocarditis.

Despite all these extra diagnoses and truly awful symptoms that I couldn’t have even imagined a year ago, I am so glad that I am not dealing with his toxicity at the same time.

I’ve seen others leave in similar circumstances, and it seemed to me those with the fairest outcomes planned things in advance, had at least some sort of “leaving argument”, and took things they were entitled to. I packed up while he was away at a conference out of fear of what that leaving argument would look like, but I did plan a bit to get what I needed for my daughter. I also know people who left for a few months and returned on their own terms (sort-of).

I’m sorry this is happening for you, and know it’s such a tough time of year for it. Remember one way or another things don’t stay the same, and there are people thinking of you this Christmas, maybe hearing your brothers voice if you are not going there for the day would be a good idea.

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I just wanted to give you a massive big cyber hug. I can see from all your posts that this really has been building up for some years. I think you know the answer.

It also doesn’t matter much about anything else but the person you live with must at least respect you, there should be at least that. There doesn’t seem to be in your case does there?

I’ve always lived on my own, until Covid forced my partner and myself (partner for many years too) to share a house. That’s certainly had its challenges too I still crave vast amounts of alone time and don’t often get it. But you know you’ll be amazed how you can manage on your own. You’ll be amazed that the financial issues end up not being the big issue you thought they would be. You’ll be enlightened and energergised simply only having to worry about you. What you fancy for dinner today and whether you want the heat on or off or the window open or shut. The liberation of those tiny things are pretty huge really.

Once you remove the angst I’m betting the PsA issues will also be more manageable. We persistently ignore the huge effect stress and unhappiness can have on our disease activity. To our deteriment too.

Keep talking to your brother and take him up on his offer. Your head will clear even more when you remove yourself from the heat of the fire. You can then make the plans. And don’t worry about trashed houses, there’s always someone who wants a project and land and buildings instrinsically have a value anyway despite any amount of rubbish and trash sitting in a house. That’s all cosmetic nonsense.

Lots more cyber hugs.

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Sorry that life is so very difficult for you @tamac , the mental stress of all that is going on is enough to bring anyone down. And as you know, stress is no friend of PsA…and then we can get stressed about all the stress! It seems obvious to me that you need a change of environment in order to make some very important decisions. When all your energy is being spent putting out fires, it is difficult to walk wisely. I would suggest that you seek legal counsel before hitting the road…every decision can have ramifications and once done can’t be undone. It is very different if you say that you need to visit your brother for a while than, “I’m leaving”. While fleeing, the “stuff” that doesn’t matter today might be of value later on. Some people come to a point of a mutual planned separation…sort of a “time out” to let the anger and battle smoke clear. I guess I am just cautioning you as you are at a point in which wisdom at every move will serve you well later. You certainly do not need a legal battle that could be avoided. Perhaps your doctor can give you a stress leave from work or an extended holiday (retirement) and take a much needed vacation to think and regroup your future before adding the stress of a big move. Thank you for not abandoning the cyber “us” by just disappearing…we all want to see you well in your whole person! You are right in thinking that the relationship tension that you are in needs to change…soon.

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Thanks, everyone.

I am hanging in there for now. I am dealing with a very bad case of costochondritis on both sides. My ribs, chest, and back hurt terribly. All the pain (and meds) have my stomach torn up. It has probably set off my ulcer again.

I don’t need relief from work at this time. I go into my room (office) every morning and hide there while I crunch numbers. I stay in there from 8:00 to 5:00 working. When I get my HAM radio set back up, I will usually be in there from 8:00AM to 10:00PM.
Working is the only thing that gives me a reason to get out of bed (recliner) every morning. I am going to take a few days off before New Year’s. I may go and see my brother (by myself).

I’ll keep you updated.

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Still hanging in. CVS messed up my script the first of the year, so I am two weeks late on my Taltz. I have been taking Taltz for 6 months now. I see my rheumy Wednesday. He wasn’t happy with my progress last time. He may decide to change. I’m thinking Tremye because it is an IL-23 blocker. I have only tried TNF and IL-17s so far.

I did read an article this morning about Tremye and long-term results. It sounds promising. Doc may want me to ride the Taltz train for three more months. I’ll let everyone know.

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50 two dollar bills and a strip club with a free lunch buffet is what I would recommend. I failed every drug, and had heart failure from the Anti-Tnf-a, Tremfya has turned my world around, I can walk, the sheets no longer make my skin feels like it on fire, and I have lost 45lbs in 6-months. It is really hard for most people to comprehend what pain is, I lost over a decade and hope things keeping going good.

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I have done Embrel, Cosyntex, Humira(every week) and now Taltz. I hope something works soon. I think Tremfya will be next. It is an IL-23 blocker and I have not tried that. All TNF and IL17 so far.

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Wow! You have way more notches in your belt than I do! How long are you typically on each biologic?

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Long enough to see if they work usually 3 to 6 months and if they don’t work - you move on to the next. I spent 11 month on a biosimilar to enbrel because initially it looked it was working then it stopped. I only spent 8 weeks on a biosimilar to humira because it totally hated me. I’m now over 2 years on Cosentyx and still doing well.

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Hey @tamac, how’s your work and home situation doing? Have you found a way to get up out of the “dump”? Thinking of you and hoping for brighter days ahead!

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I am trying to hang in there. My pain level has become nearly intolerable. I posted else where that I suspect I have bad fibro.

The situation with my wife is no better, but I feel so bad now, that is not even on my radar.

Even working from home, I had a few days last week that I just didn’t have it in me to try and work. It is very difficult to try and work with hundreds of millions of dollars and not make a mistake because I can’t think clearly. I have become fearful of making a huge mistake in something, so I end up checking and rechecking before I send anything out.

This week I had a difficult time as I realized that my career is coming to an end. At work, they started a class for “future” leaders. I went, but after it I thought what is the use, but I have to play the game.

After 28 years at my job with the state, I have had to realize that there will be no growth in it. I had planned to work until they dragged me out. Now, it can be a day-to-day thing. I really don’t want to retire or file for disability. Having my job makes me get up (most mornings) and go on. I am afraid now that if I retire and file for disability I will have no reason to get up in the mornings, and I know that would be very bad for me.

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I’ve always been a fan of easing into retirement instead of a complete and sudden jump. Maybe you can go to a half time work situation for a while? Most of the ones that I know who have retired are busier than ever. Life just seems to find ways to busy us. You will work it out, it will be a good fit for your mind, body and whole person when the time is right, Take care!

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Big +1 to both of you
If at all possible an easing can be much safer for both the body and mind if at all possible. The toll on the mind is often discredited but it can be massive, when it’s unplanned or thrust upon us due to health it isn’t just doubled, it’s multiplied 10 fold.

I went from working 50+hrs a week to nothing. My mind still had that drive, the body had ceased functioning. I tried to force ‘the body’ to do more, but it kept pushing back telling me “Laydown or I’ll put you down” and it put me down HARD.

We all hope, wish, pray that we’ll keep going until retirement age (Well, that was my plan anyway) the reality is that often that’s just not the reality. Making some sort of contingency plan of a ‘What if…?’ scenario or a plan on how to wind down safely can help with the ‘acceptance’ part. I did this prior to surgery ie ‘What if tomorrow… …I drop dead?’ So I set my will up. Made sure my insurances were all in place. Covered all my debts. Setup a funeral plan. Made sure my/our home was secure.

Well, as it turned out… …I didn’t ‘drop dead’. But what has happened is that I’ve been left in debilitating agony on a daily basis and can no longer work. Luckily for me one of my insurances paid out. Had I not made some sort of a ‘what if plan’ I presently would be homeless, up to my eyeballs in debt and probably divorced (If she hadn’t shot me before divorcing me :astonished: ) Don’t get me wrong, I’d much rather be back in my chosen role, but I’m lucky to have made some sort plan.

Merl from the Modsupport Team

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Sounds familiar. I think the going from running a 100 miles per hour to zero has taken a lot out of my mind. That may be the hardest part to get used to.

After a few email exchanges with my rhuemy, Taltz is out after 8 months. In three weeks I star Tremfya. He told me to come by his office and pick up the samples to get started. The bad news is the last line of his email was “I don’t know what else to do for you.”

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Remember there are still the JAK inhibitors like the one @Amos is on too. Best of luck on Tremfya, I was nearly involved in a clinical study with this one. Sadly I fractured my pelvis (osteoporosis stuff) and couldn’t take part.

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I agree with @Poo_therapy and if possible, it might time go to a JAK inhibitor asap. I’m on Rinvoq, one of the most currently approved meds.

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i do sympathise, work becomes so much part of our identity, but the challenges, in my case possibly also from mtxt medication, seem steep , am also trying to be terribly careful with written material and all communications, and at the moment am not doing one of my jobs of four language simultaneous interpreting, dread how I could create mistakes.

Anxiety is alas part of our set up for many reasons, but certainly the disease does not help. At the moment am still working from home largely due to Italian pandemic policies for fragile workers, but am not sure it is a bonus, as staying home writing reading and speaking on the phone is not the most natural of environments. It should take time for me to be able to retire, will have to look into it, possibly ratifying bureaucratically invalidity further might allow for somewhat earlier retirement, that is of course all things being stable in the country from an economic point of view. I do not know, on one side rest would be good on the other possibly continuing has benefits if one manages to hold on, as much as possible.
All the best to everyone,

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Hi,

Just checking inn to see how you’re doing?

Frances

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Hanging in there. My doc and I decided to pull the plug on Taltz. I am worse now that I have ever been. I start Tremfya Sunday.

I have started having constant swelling my hands and fingers and now some of the jpints hurt badly. That is not good and also prompted the change.

Doc said if the Tremfya did not help quickly, his only idea left was to put on an infusion of TNF. He is afraid that as big as I am, the standard pre-filled syringes may not be enough and teh infusion is dosed on body weight. A 6’ 5" and 300+ lbs (including the COVID 40!) I am a pretty big guy.