I need a dummy spit…hope nobody minds. For the last 6 months, after failing three DMARDs, I have been in another medication gap. I am on the incredibly slow track to biologics…this track is so slow my 21 year old will probably be in retirement before I get there. It’s a long story which it is for so many of us. It’s been tough and probably won’t get easier for another 4 months (when I return to the biologics clinic). I have posted previously about my reactions to meds and the complications of diagnosis…I know this is a similar story for many members.
I haven’t been posting much lately, using all my energy to manage the symptoms, love my family and keep getting to work. I am so very lucky in so many ways but feel so tired trying to manage this gap with very little meds (celebrex, panadol and occasional steriods). I reckon I have been doing as best as I could. Generally I am a sunny side up kinda gal but gosh I am being tested. Recently Doc has started to question whether I also have IBD and vasculatis (including in my temples). All this gut pain I have had on and off for about 10 years and now they think it might be related and the headaches! Doing some testing at the moment to start what I am sure will be a long process of trying to work it out.
I feel so angry and sad when I start thinking about this and how it keeps getting in the way of my life. Recently I have had to reduce my work hours because I just cannot keep going at the same pace until the meds are sorted. It was my birthday yesterday and it’s hard not to see the year stretching out before me looking much like last year…
I knpw I will bounce back up…just like my avatar…but if one more person dismisses my symptoms as ‘menapause’, ‘the aches and pains of ageing’ (@49l, ‘unrelated to PsA’, or something similar I think i might scream. Sorry guys, i just needed to get this out. In some respects I thinking getting angry sometimes helps me keep pushing forward:umbrella:
Hearing you loud and clear!! I gather the biologics clinic did not deliver first time around? I really thought you’d got lucky there, what an absolute bummer.
And it all sounds so confusing for you … ‘extras’ or perhaps comorbidities being considered while at the same time hearing the same old dismal *&%^ocks about menopause and ageing. I guess I’m having a low-ish patch, it takes longer and longer to get moving every day, mainly, and while I keep the frustration under wraps I am aware of a lurking sadness too. And of course that can be simply part of life … but in my heart I know it’s PsA-related. I think as time goes on we get very good at discerning what is and is not linked to PsA. If I was waiting endlessly to start aggressive treatment I’d be out of my tree with frustration at eking out energy that might well be restored with the right drugs.
I’m so angry for you. MacMac, you most certainly are a bouncer-upper. Of course we’ll be curious about what the delay is about but meanwhile just let rip if it helps even a little bit.
I sometimes think it’s hardest on the women who develop symptoms close to menopause. It’s too easy to dismiss many symptoms as menopause related, or aging. The same thing happens with kids too often. Their symptoms are dismissed as growing pains.
Oh MacMac- let it rip- vent away! Please don’t take this the wrong way- but I am somewhat happy so many others feel the way I do - yet SO VERY ANGRY FOR US ALL at the same time. I cannot relate to the female side. I can only imagine how very difficult tossing that into the equation must be… Ugh…Sending you E-hugs, peace and strength.
This is a tough row to hoe, for sure @MacMac. So sorry you’re having a tough time getting the treatment you need. And the comorbidities are the pits.
Every piece of yourself that you could reasonably rely upon is now a little less reliable. Strength, stamina, mood, mental fortitude, focus, pain tolerance all take a hit…and all this can make you feel whacked out and so much less tolerant of platitudes and pablum answers to tough symptoms.
Seems to me that you’re doing the very best you can by conserving resources, pulling close to those closest to you and keeping your head down. Know we’re here when you need us and that each and everyone of us has been where you are and we hated it too. Hang in there.
Thanks everyone. …every post has helped me so much today. It was a rough night last night with feeling unwell and teary but seeing each post today helped me find enough bounce to last the day. So many helpful words. Thank you xxx
Waiting is the worst thing … And then one day the sun comes out and we get put on something that finally helps and we slowly but surely start to feel better! Your day in the sun is coming soon
Well the day has arrived… 2nd Biologics clinic appointment. I wonder what will happen this time? I have managed this latest gap with extra meds. But winter is coming… maybe biologics?
Wow, MacMac, I just feel sad when I hear of people like you who are struggling with all the symptoms, the DMARDS aren’t working and now you have to wait 4 months to see the doctor!!! I remember the hopelessness I had when my symptoms snowballed and I couldn’t get relief quickly enough. But then when relief does come, it’s so nice to feel “normal” that it’s easy to forget the horribleness of the disease…I hope that happens for you when you finally get a biologic! I keep saying I could never handle the aches and pains I have now if I still had all my PsA symptoms. And, I can’t fully remember how bad the PsA was, but I know it was bad–just like a mom knows the pain of childbirth is bad but can’t “relive” it after it’s over!
So, hang in there!
I can’t fully remember how bad the PsA was, but I know it was bad–just like a mom knows the pain of childbirth is bad but can’t “relive” it after it’s over!
Thanks everyone… well it turned out to be a bit of a vulnerable day for me…waited 2 1/2hours for appt. My casenotes were lost, my MRA report checking for temporal vasculitis wasn’t done yet. All rolled in with the vulnerability I feel anyway when I go to appointments…my partner said that he was glad he had come as I kept on minimising my pain and he kept on having to remind me not to.
Anyway my rheumy has sent an application through to medicare for a trial of humira. I am not counting my chickens quite yet as medicare can decline it or ask for further info. I want to be counting my chickens but nothing has really been smooth for me with meds so no chicken counting yet!!! Any Aussie know the chances of being rejected at this point?
I do feel relieved that my very caring rheumy and the biologics clinic nurse who is also wonderful, have got me through all the box ticking as it is not easy given my amount of tendon involvement and fatigue yet no visible joint damage and a general tendency therefore to be hard to fit into boxes.
I also learnt, while two doctors did the joint count, that I now have permanent tendon swelling and some joint swelling in places I didn’t realise…and how to tell the difference between the two. And that the reason I can’t have my arms extended straight for long is becuase of the swelling in my elbows…i thought it was being unfit as my fitness has really suffered these last 4 months…I have lost a lot of my bouncey resiliance…
Line those chickens up for 6 weeks time…if I get rejected guess I will just have to make chicken soup to console myself
Great news!! My approval took a while here but omg humira has made a massive difference to my pain, swelling and life. Keeping everything crossed for you xx
I got this disease bang in the middle of menopause. I got it also bang in the middle of grieving the death of my mother who I had a fabulous relationship with. And I can quite categorically tell you, once I knew I had this disease I went into full time grieving mode of the loss of the future I thought I was going to have and the sheer anger and indeed terror that I was handed one with PsA instead.
So I’m 100% with you on so many of your feelings. I also think the times when you do virtually ‘decide’ to spit out the dummy, have a temper tantrum etc aren’t always bad too. Grieving is awful at times, it’s also natural despite its awfulness and despite it, we end up accepting the loss or somehow accomodating it too. I call it a roller coaster ride and not one I always want to be on either.
One thing someone told me was the depth of your grief often reflects the depth of your love. So that could be the love of a person, the love of your abilities, x or y aspect of your life or whatever. I found that comforting because if I was grieving the loss of whatever it was this much then I really did love ‘it’ didn’t I? And if I loved it that much, I was lucky, fortunate, blessed or whatever else. That gave me courage to be more positive about what I still had and could still love. And more importantly to find other ‘things’ to love too in my future, not as replacements but as additions. That helped on many of my more horrible roller coaster rides.
We don’t tend to talk that much about grief, especially when diagnosed with diseases such as ours, yet I bet every single one of us has grieved long and hard over it.
So we’ll all mind that dummy of yours so you don’t lose it:slight_smile:
Are the chickens lining up to be well and truly counted yet? Any news at all?
I’ve been having a lot of trouble with my fowl too. Every time I think I’ve got a nice brood, the fox gets in overnight. It’s letters, it’s phone calls (or rather queuing on the phone interminably), admin staff that know nothing, systems designed by a sadist. All I’m trying to do is to confirm my referral to a new rheumy. Think I’m nearly there … but was that a bushy tail I saw?
It sounds as if this process has involved very thorough physical examinations so at least you now know more about how PsA is affecting you. And presumably it is all documented and has helped build a strong case for biologics. Plus the worse it is the better the argument for ongoing treatment. Since starting Humira there have been very few points at which I’d have qualified for biologics. So I’m glad the initial assessment painted a suitably gruesome picture of what I was like before it.
Looking forward to the day when some (all!) of your symptoms are safely in the past too.
