I had an appointment with my Occi Health Consultant last Thursday, and as the title suggests, I lost it and became a snivelling heap of tears and snot! This Doc has been fantastically supportive since I was diagnosed and have seen him each time I’m long term sick from work.
His compassion is what unglued me. He spent nearly an hour “logging it all down” discussing, examining my sore points and finding a few more even. Discussing my work/life balance and commenting that my quality of life presently is not good and unsurprisingly I’m depressed.
I’m seeing my Rheumy this afternoon and will be seeing the Occi Health Dr this Thursday to discuss the outcome of todays appointment and what to do about that work/life balance.
I just wanted to say how good it was to let go finally and admit I’m really struggling, to have a doc understand and validate my feelings and want to work out an action plan together.
Now that sounds like it was a really productive consult, snivelling, snot and tears and all. You need to tell it like it is, Louise, and mission accomplished! I’m hoping that your consult with the rheumy is a productive as the one with the occi health guy. I’ll be waiting to hear what happened!
Don't you hate it when you're in a vulnerable place and people are nice to you? Tips you completely over the edge, doesn't it. My partner is always reminding me that when I'm at the Dr. it is my job to be the patient and that means sharing all the dirty secrets and truths and sugar coating nothing at all. But doing that means accepting how bad it is sometimes. Denial can feel safer than truth. So, well done for letting down your guard and letting out your anxiety and pain. I'm glad you have such a supportive advocate.
Good luck at the rheumatologist this week. Needless to say, keep us posted.
Thanks girls, feel very anxious about today appointment because I know I’m still extremely tearful.
Have my shades and plenty of tissues with me lol.
You’re so right Jane, denial feels a much safer place to be.
Thanks for your support x
What applied yesterday, applies today, Louise:
I just wanted to say how good it was to let go finally and admit I’m really struggling, to have a doc understand and validate my feelings and want to work out an action plan together.
Yesterdays appointment was with the Rheumatology Consultant who I’ve often seen before so luckily I didn’t have to go through the whole rigmarole of explaining everything to a new doctor.
He listened, he examined we discussed my quality of life (without too much snot! I’m pleased to say!)
The problem is, although I have widespread pain due to enthesitis (its easier to say what doesn’t hurt rather than what does) I have very little joint swelling and none of them large joints. My PsA has always been classed as non erosive, which obviously is good news, but here’s the rub…because of this I don’t qualify for Anti TNF therapy with the NHS.
So as my thoracic spine is more painful and has previously shown bone marrow oedema the plan is to have another MRI to see if the inflammation is still active and if there is progression. Under the NHS guidelines on Anti TNF therapy in PsA, if there is progression I may, yes that’s MAY, qualify for Adalimumab (Humira)
He admitted that I have been very difficult to treat effectively because of these NHS restrictions and my atypical presentation of PsA as far as my joints go. I sort of fall through the net. He says he has also considered other chronic pain conditions such as Fibro but my pain points don’t correspond. My bowel issues, which my GP has diagnosed as probable IBS, may also be tied in with the inflammatory issues, so I’m a bit of a mystery.
So, I’m waiting for the MRI appointment with fingers crossed it won’t be too long a wait. Meantime he’s prescribed a different and stronger anti-inflammatory Arcoxia and told be off for my choice of footwear ( not supportive enough)
So am I hoping for progression? Well no, of course not, but without it I don’t feel I’ll be moving forward, but that be moving backward wouldn’t it??! I’ll sort of be stuck in the gap.
I’m back to the Occi Health Dr tomorrow so will see what we can work out with regards to my work life.
This link should take you to the guidelines of who qualifies Sybil…found it last night. Think it was on or around page 28/29 where there is a sort of checklist for the Dr. But anyway it looks to be a useful document to help explain the usage of biologics for PsA in the NHS.
I don’t wish large joint swelling on myself lol just wish this tendon pain could be treated as its so widespread, don’t think painkillers are the answer long term, and 30/500 co-codamol doesn’t really do it.
At the end of the day, it is what it is.
Either we will find a way to treat me or we wont.
May all your swellings diminish (a new PsA blessing for us I wonder lol?)
seems you're not sick enough in the right places. That's a total bummer. I hope your consultant can pull the pieces together to get you some more aggressive treatment. Or you could move to France. Or the US. Such a frustration to be so unwell and yet still not "qualify". There have to be appeals you can file. When my step-dad was sick with myeloma my mum found every last loophole, clinical trial, appeal, you name it, to get him extended therapy because the NHS cut you off after a while if you don't respond. (It extended his life by a couple of years.) But do you even have the time and energy to be your own patient advocate? Thinking of you. ~Jane
I know I’ve got a lot of searching for the right help. The Occi Health Dr included in the mix last week that he believes its time for me to reduce work hours and try to get benefits to fill some of the financial gap. We both discussed that in theory this sounds a sensible step to help give me a better quality of life, but…!
As our benefit system is going through big changes this may not be an option. With this in mind I’ve got an appointment with the Citizens Advice Bureaux to run through some “what if” scenarios to see by how much I can cut/ manage my hours and survive financially.
I’m sort of cynical about the whole health and benefits issue, as all my life I’ve never had any option but to stand on my own 2 feet and provide for myself and my kids even when I didn’t have “2 pennies to rub together” as I “only just” didn’t qualify for assistance. I sort of expect the same now as I own my own little house outright…ergo I don’t need help. I think it will also transpire that if I kicked out both my adult sons ( 1 who has ADD) I would be in a much better position, but that’s not going to happen!! Where as if I lived in social housing I would get everything that’s going. Sorry, cynical with a touch of bitterness me thinks…need to go and give myself a mental slap
Oh, Louise … you are in your own big Gap. Interesting that prevention of joint erosion makes a person qualify, but pain from enthesitis that is bad enough to limit your work productivity is not. CAB is definitely somewhere you need to go. You’re allowed to be angry, cynical and just a bit bitter – we know you, and we know that you will work your way through this, give your head a shake, and move on. You are tough and resourceful!
Every system has its pros, its cons and its cracks. You’ve fallen in one of those cracks. Here’s what I am wondering: your occi doc would be willing to help you appeal this, asking for a trial of biologic (maybe time limited) to see whether a biologic would help keep you at work. That’s your goal, isn’t it?
There must be a way … and if there is, I know you will find it.
I’m already getting there Seenie, I’ve got a fresh coat of paint on my revolting toe nails ( amazing what a lift that can be) courtesy of a friend who popped in for a cuppa. Did a bit of online retail therapy ( maybe not the best timing re: possible future financial position)My attitude is getting back to the “its not gonna get me down” of my usual status.
Will hopefully have a useful discussion with Occi Health Dr this morning, minus the snot! Lol
I’ve already broached the time limited trial with the Consultant but he needs to be able to show evidence of the clinical need for a biologic so that’s why hes ordered another MRI.
Another though has occurred to me. He has given me a stronger anti inflammatory, question is do I take it before I have my MRI??!! To be honest, maybe I won’t until after the MRI, or do you think that’s crazy talk?
Thanks Laura, I wear Birkis normally at work and although they have no padding they are really supportive. Before my appointment I had difficulty parking and forgot to change out of my driving shoes as I was worried about being late so had on a pair of soft loafers at the time. Have dug out my pair of sandals which are supportive and am wearing them round the house and out and about. Good thinking about PALS I had forgotten about them. Luckily my union rep has been with me every step of the way, especially as I’ve had to fight my corner several times because management have not followed the Trusts sickness policy.
The whole thing is a bit ironic; I’ve fallen in a crack that’s caused by safeguarding NHS money, which I fully appreciate. But I’m costing the NHS money as I’m off long term sick (7 weeks so far)
My new mantra in my head is “It is what it is” and I’m trying not to take it personally
Hi Louise, sorry you're having such a rubbish time at the moment and it doesn't help when you know the anti-TNF drugs are likely to help but yet you can't access them because of the qualification criteria. I'm going to try and find something my consultant gave me on the NICE guidelines and will post it later if I think it might be useful to you. In the meantime I can definitely vouch for FitFlop footwear, recommended to me by the biomechanical podiatrist I was sent to see. They are the only reason I can still walk. And they do a health service approved 'clog' in white and black http://www.fitflop.co.uk/Womens-Gogh-Pro-Black/883945120473,en_GB,pd.html?start=44&cgid=womens_shoes which are wonderfully comfortable and supportive with or without the heel strap. Just on the sizing I'm usually a size 6 in most of their styles but I need a 6.5 in the Gogh Pro. I find their ballerina's too narrow for my sore feet but have a vast selection of their sandals, clogs, boots, sneakers .........
They do look good Laura, my birkis are very similar but our department requires a higher back to prevent sharps injuries in case the fistula needles are accidentally dropped ( like sharps aren’t used in theatre where clogs are allowed?!) The particular Birkis I wear have a weird heel guard which doesn’t touch the back of the heels ( I have P on the back of my heels) is high enough to pass the environment audit…took me years to find these shoes and stopped having to get a Doctors note ( I kid you not!) each year to allow me to wear clogs.
So although my work shoes are comfy and supportive some of my otherwise shoes aren’t and as I love nothing better than bare feet at home when its warm enough, I need to be more sensible and get more with it at home.
You should see my toenails now…gold! Maybe a rainbow next week lol
Don’t really know what to say about my Occi Health appointment today…If MRI doesn’t indicate the use of Humira, looks like I will slowly be pushed put the door on ill health grounds. Doctor has said I am definitely not fit for work at present and is booking a case meeting for after I can get hold of the MRI results and email them to him. So meeting should be mid to late May.
I’m thinking…are we really talking about me?!
I know the “are we really talking about me?” feeling. I’m so sorry, Louise, to hear this. I would be planning an appeal for sure.
I hope The Bunny is very very good to you. You deserve that. You do not deserve what is happening to you now.
Thanks Seenie, I do feel a bit peeved about it. The doc was only telling me how it is, which I really appreciated. He thinks the case meeting will enable us to keep me at work for as long as possible and will prevent any underhand manipulation from management. If we do have to go the ill health route it will also give evidence to " the powers that be" that everythings been done to keep me in employment, which could make things easier for me financially long term.
I’m just going to go with the flow, push when I need to, and accept what I must. My sons had a hilarious conversation with and about me discussing how they would have to take it in turns to “take me out in the garden with a hose and a yard broom, for my personal care” to get hold of some carers allowance. That had me in stitches! Maybe not a conventional way to offer comfort but typical of their humour
Thanks Sybil, I’m sure we will be able to sort something out along the way. I can sort of cope with the pain issues but its the fatigue that stops me working more than anything. I am lucky that I can structure my working day as best suits me, within reason…but this pesky fatigue means I struggle to even get my basic housework done, and take countless sofa breaks.
So onwards and upwards, keeping my eye out for the MRI appointment letter then take it from there
Happy Easter x
