I think I hit a bit of a wall on Christmas Day. Since no one is allowed to enter our home unless they live there, our very close knit family didn’t meet indoors this year. Instead, we did what was permitted and met outdoors at a snow hill and visited appropriately and watched the grandkids slide down the hill. It was great! But watching my wife and everyone else sliding made me realize how much I hate the restrictions that PsA is putting on my life. I felt so sidelined like an injured player who wishes they could get off the bench and into the game. I used to be the first on the field. I couldn’t carry the little ones or go zipping down the hill holding them tightly and screaming. I am blest to have such a wonderful large family of children and grandchildren but man I hate this disease and its ability to alter life…Its like becoming old 20 years early! Yesterday I strapped on my snowshoes, a beautiful hand made traditional type, and decided to push through and go for a bush walk. It was great…but can hardly bare weight on my right foot today. Everything in my feet and knees are chewing me out for going snowshoeing. I’m mad enough at the PsA right now that I might just try to show it another lesson or two! I think this is my last pity party of the year…thanks for listening!
Time was I’d wake up in pain in the middle of the night and shuffle downstairs on my backside. Often my wonderful husband would join me, making cups of tea and helping me through the night.
As it happens we both date the time the disease really started to turn around, to truly respond to treatment, from the night I lost it and started yelling about how much I hated PsA. I even punched a door (foolhardy in the circumstances but cathartic.)
I went snow shoeing last weekend. Flat easy walks. On the second day I told my husband that I probably shouldn’t go out two days in a row. Since then my hips, knees and feet have been killing me. I clearly should NOT have gone the second time. But last winter I couldn’t do anything with 2 broken feet, so I was super happy to be able to get out. Pretty sure the second day wasn’t worth it.
So true, feelings of abrupt end of immortality, I guess. Was furious with colleagues a few days ago, then realized I resented not being able to physically go to the editing room because of my sheltered status, my own limit. Received the privilege of being able to work from home, yet on another side feel as if am looking at the window of goings on. Guess Icarus went too near the sun. Walking, breathing through masks, grappling with changing mind and body, while always having been a problem off and on from childhood, takes an effort to turn the situation around and realize the privilege of being alive at all, and to enjoy what we have .
But a perfectly reasonable word in these circumstances. Or at least I think so. So when is that rheumy appt in January? Sounds like you need to try biologic number two now. This one isn’t helping enough. Is it? And it ought to have been doing something more positive for you by now. Remember it took until biologic number three for me to see anything coherent happening capacity wise. So keep pushing on.
And I love that your personality won’t let you do this ‘chronic illness’ thing without a huge big fight. Too many people I know, take on the mantle of ‘being chronically ill’ far too quickly. And then sit under it quite happily it seems. I remember the first time I had to attend the hospital for the full array of blood tests and x-rays for this disease and being utterly horrified to see so many people enjoying their ‘day out’ at the hospital - it was evident this was a regular occurence for them too. It made me shudder in horror and right then I vowed I wouldn’t be one of them. And 5 years on I’m not and I’m ever so grateful for that.
My major problem right now, is that because of this UK new variant Covid plus Christmas etc, I can’t find anywhere empty enough of other people to enjoy a decent long walk with my dog. As a result I’m stiffening up something rotten and the dog is fed up too. Roll on tomorrow when at least it’s not a bank holiday anymore and hopefully we can find some decent space.
Roll on till your appt in January too.
What an “outing”, @Poo_therapy! A day at the hospital…yeesh! I dread hospital visits for days before hand. Ever since they stuck a Foley catheter in me without asking while I nodded off, I just don’t trust them!
My next rheumy appointment is at the end of January. There have been some changes likely due to Humira…psoriasis is pretty much non-existent, fatigue is less and I am sleeping better. I have to admit that I may still be trying to do too much. Trying to walk as far and as fast as I used to, working too long in my workshop absorbed in a project ‘cuz it distracts me from the PsA etc. Once I am really loosened up, it feels good to do some strenuous stuff but I really pay for it later. But inactivity/rest ramps up the stiffness. I feel like Humira and PsA are in a tug of war right now and either one has its victories. I really dread the thought of admitting that Humira has failed mostly because it means back to the beginning and another 3-4 months of hope that it will work. All of you have been on this journey for a long time, I admire your ability to keep landing on positive ground and “rolling on”.
This variant issue has me puzzled. If it is a morphing of the virus, why the concern about variant transmission? Won’t it just happen everywhere anyway? I don’t think a virus needs anything from us to alter its make up.
Does anyone want to hazard a guess as to when the restrictions will ease up? Will the variant create new fears and deeper lock-downs?
Lastly, Keep your dogs close! I heard that dog-napping is a big problem in the UK as they are worth a lot of money. Some thieves are asking for ransom money for the return!
I see what you’re saying. I guess the thinking is that if the new variant is contained, then inevitable though they may be, mutations occurring elsewhere may be different and less dangerous.
The parts of the UK where the new variant has taken hold have certainly seen a very steep rise in cases and swingeing restrictions as a result. Putting all of London in Tier 4 (the ‘new lockdown’) was a massive step.
PsA is an old foe for me. And it won’t kill me. If this was a new battle as it is for you @Amos I think I’d be finding this time very difficult indeed. However I have what appears to be a respiratory comorbidity which is not being addressed due to the pandemic. I did manage to speak to ‘my’ lung consultant by phone, really personable and thoughtful doctor who sounded older and Asian. He has now damn well retired! I don’t blame him, perhaps his profession / age / ethnicity added up to a ridiculous level of risk.
@tntlamb, That’s great! Start making T-Shirts!
That s tough Sybil, and know how you feel. Contagion rampant in Italy , need to go to a dentist plus check ups, am trying to do everything as privately and off hours as poss. Vaccines are starting but do not as yet know who and when will benefit first after relevant social professionals , doctors, nurses, pollice etc
Yep, Christmas was a bummer this year. We didn’t get to visit with family. I have seen my brother and mother a few times, but now in Tennessee, we are the leader in new cases, so we have stayed home. My mother just turned 97 and I hated to miss Christmas with her, but she doesn’t know it is Christmas unless we tell her.
I took Christmas week off for vacation and so did the wife. Not much different than working from home, but I got to sleep 10 or 12 hours a day. I pushed myself hard three of the days to get some work done on an antenna system for my HAM radio. I am sore and stiff now, but actually held up pretty well. I am forcing myself to do more and get more active. Maybe the Humira is finally starting to kick in.
I am wondering and waiting for any feedback from biologic users about get the vaccine whenever it is available. CDC said folks with autoimmune issues could take, but they had no safety data on it. Gee, thanks, CDC. I guess we will have to wait and watch.
Still no follow up following the retirement of our friend? Yikes!
The main issue is that it’s up to 70% more easily transmissable than the original version. It appears this far anyway to produce the same disease as in not any worse, but it’s far easier to catch sadly. That’s why everyone has got excited about this mutation. And viruses do mutate all the time but this mutation isn’t at all welcome. It’s responsible for the huge increase in positive tests and is now being responsible for the huge rise in hospital admissions here in the UK.
So that in turns means even less exposure to anyone else at all whether indoors or out, whether masked or not.
But this is a rheumy decision, not a CDC decision. Look at this way, the Pfizer and Moderna version have a teeny bit of the RNA of Covid 19, the Oxford/Zeneca version doesn’t. That version is awaiting approval in the UK presently hopefully this week. My rheumy has told others that she thinks this is the version us lot will be given. However I have a friend under a different rheumy and with RA not PsA who works with kids with severe disabilities and so is to be given the Pfizer vaccine this week as she’s considered a key worker. Her rheumy is fine about that despite the fact she’s on biologics.
Personally I’ll jump at any vaccine I’m given.
Dental treatment’s the worst! (Okay, maybe not the worst). Must be millions of folk with toothache in this new world.
Hi not been on here for a while I’m afraid,does anyone have any updates on how the vaccine will go or affect psa,I am on mtx but come off it usually through summer and start again in winter due to damp and cold,I take a lot of vitamins and the odd pain killer when required as wasn’t to keen on taking the mtx due to the virus at the moment ,I am a key worker and need to attend peoples houses for repairs so am fully aware of the Ppe situation and don’t want my immune system back in a non state at the moment.
Don’t know about the rest of use but my rhuemy appointments have been cancelled 3-4 times and reckon they really don’t want a high volume of people in hospital for the force able future due to virus still ongoing ,hopefully vaccine will be more ready available in Scotland shortly
I have a question. How long was everyone who is on Humira, on it before it didn’t work anymore? I have been on it since August and the pain in my feet is really bad at the moment. Like most of you, I push through and take my walks to keep me going, but it is so hard and is very tiring when you can’t walk properly because of the pain. Thank you.
Amos, you are using my line”thanks for listening” after my rants to my family I just say TFL! Lol. I’m not sure what stage of psa you are at or your meds but I understand the frustration with not being able to join in. Hopefully eventually your meds will allow you to, so don’t give up. I am pain free and can do most things, other than typical lack of mobility of a 70 year old. I’d suggest give it time and be in contact with your rhuemy about your progress or lack thereof and maybe your meds can be adjusted. My Rhuemy appts have been over the phone. I’ve been on meds for 16 months and last month I complained to her about feeling lousy for a day or two after my mtx injections. She lowered my dose from 20 to 15 mg and I feel so much better. Give it a go, don’t be afraid to contact your rheumy, that’s their job. All the best. Oh ya I spent dec 24-29 home alone, sucks but I’m alive.
Thanks @wisc72 for the encouragement! What meds are you on and for how long?
Started sept of 2019. 20 ml injection of mtx weekly. Sulphasalazine 2 tablets twice a day = 4 a day. 5 mg of folic acid once a week, the day after my injection. Told my Rheumetologist in early dec 2020 that I feel like crap the day after my injection so she lowered it to 15 ml. Been doing that for 2 weeks and feel a lot better the day after. She also put me on 5 mg of folic acid daily at the same time. Maybe my joints will act up later but haven’t so far.