Financial cost of Lupus

[Cathyan]

When I read posts from newly diagnosed lupus warriors on here I think about the things I wish I had known early on. One thing in particular is how much it costs and how long it takes to find the foods/accessories and activities that are helpful or essential. I think there should be a generous grant at the outset to buy/pay for an initial outlay, means tested or otherwise. Or the facility to buy VAT free items through bulk bought supplies at hospital clinics. For those who are sun/UV sensitive it is especially expensive to buy hats and clothing that are protective, not to mention computer and lighting equipment (like fluorescent light UV shields). How have you all found coping with the expense? Have you made lots of mistakes along the way like me? Food supplements you’ve tried?

There's the extra cost of the diets we have to find by trial and error - gluten and lactose free for me.

I’m nearly 20 years from diagnosis. I have bought one or two items a year and built up very slowly, from necessity. This year I've been determined to finally equip myself properly. Coming on here has taught me a lot. I finally bought a UV protective parasol for the garden – I can now sit out (fully creamed up) for 30 minutes before 9am and it is a wonderful feeling! Three other purchases this summer - £90 on UV face masks and summer gloves from Oz (Solbari), a LowBlueLights.com laptop UV screen from the US ($76 plus £18 UK customs), 5 Durham medimask UV face shields (£30) and an eInk writing tablet called remarkable which was £299 (from the last of my lump sum pension savings).

What do you all pay for regularly and what have been your big expenses/items?

[Spanielmadlady]

Hi Cathyan. I manage ok at the moment but I'm dreading my son turning 18 as I will lose approx £500 pm and be on the bare minimum.i invested in a all weather gazebo this year.i have a yard with high walls but it faces south and especially during the height of lockdown I couldnt tolerate my own outside space. So everything was moved and the gazebo was put up and pots rearranged around it .I can sit in my recliner and read or set the table and eat out .I even put some fake grass down ( much to my sons disgust but my dogs love stretching out on it ) the high walls mean little wind so it stood up to the gales we had.think it cost me around £50 for my factor 50 hat.i only get reaction lens because I take azithromycin and even then the optician has to justify why I need them.thankfully i dont pay for my prescriptions as I take thyroid medication so I'm exempt.

Diet wise I think I should try lactose and gluten free but cant afford to buy to lots of shopping so leaving that until im on my own.

Affording my car worries me again due to uv sensitivity, immunosuppression ,fatigue and breathing issues.i dont drink,smoke,socialise,go on exotic holidays or have a big fancy house but still have to cope with a chronic illness on bare minimum and I cant do anything to boost that income . On we go like our illness itself we deal with it and somehow manage.xx

I do get the warm homes grant from my energy supplier 👍 x

[Cathyan in reply to Spanielmadlady]

Your gazebo sounds like a very good investment Spanielmadlady. I love the sound of how you’ve set it all up. And the tip about keeping a hat on so you don’t accidentally expose yourself outside too long. There should be grants for equipment and clothing though. How can people afford what they need on minimum incomes!

Still I recognise there will be people from the US on here who don’t even get free health care. I should just remember that and be grateful we still have an NHS.

[Spanielmadlady in reply to Cathyan]

Most definitely...Im grateful for the care I get now ( had a few incompetent encounters along the way) .as you say reduced vat would be a help.im so reliant on my car now .I can get reduced tax but they dont do it online and it means going to the central po for the forms ,filling it all in and sending it all away with proof .I wasnt able to do that during sheilding.

The gazebo was £130 which I know you can get them cheaper but it's a steel all in one pop up frame so easy to put up .through the back gate and it opens up to a large communal green where people sit out but this way i can keep myself to myself if I want too..i enjoy the little things like sitting under my gazebo amongst my plant pots with a cuppa for 10 mins 😊.

Sometimes it feels that people who self inflict on themselves get more help then those of us who are Ill through no fault of our own and would rather be working .

People think I'm well off with my partner dying but I didnt get anything as he was too young (as he thought) for a will so everything was put in trust for our son....I got nothing but hayho onwards and upwards xx

[Cathyan in reply to Spanielmadlady]

Spanielmadlady I'm so sorry you've been left in this position and for the death of your partner leaving you with a young son and your chronic illness. The gazebo sounds like it's been the perfect investment to help you through the awfulness of a sunny pandemic summer.

[Spanielmadlady in reply to Cathyan]

Matthew was 6 Jennifer 17 at the time and I became seriously ill 4 years after that.the only way was to face it head on and get on with it which I guess stood me in good stead for being ill. Reading Kats account i too am saddened by the expense she has to incur through no fault of her own.i dont think your post was trival regardless of where you live there should be more assistance for chronic illness x

[Kat136]

Hi Cathyan, I'm in Perth West Aust. Although we have free health care, allegedly, I have to make a co payment for every Dr visit including the GP. All these appts are over $100 for the GP, nearly $300 for psychiatrist. Then Medicare refunds you, usually less than 50% of the cost. There are thresholds which those with high costs can meet then get a greater refund. I've now reached this so get 85% back now, but I've spent more than $3000 dollars to get this. I am currently receiving a govt payment as I'm not working but it is less than $600 a fortnight, currently there is an extra payment of $550/fortnight for COVID but this stops at the end of the year. For the last 2 years I have received an insurance payment from my work employment but this finished in April. Also our prescriptions are $41 each unless you can get a generic brand, but many of my meds don't have a generic alternative. With my govt payment I now get them all for $6.60 but if I go back to work I'll lose this benefit too. It's damn expensive to have a chronic disease that causes degeneration but gets no govt assistance unlike diabetics here. I also need to keep my private health insurance so I can keep up my physio, dental, optical care as none of this is covered easily by our public health system. I had a stroke and only received 10 weeks of Neuro physio despite my right side being extremely weak, my arm especially, which I couldn't use. I have paid for all my physio, hydro and occupational therapy since then. I also have to run a car as public transport in Perth is patchy and not good in our area, a bus an hour outside peak hour. I live with my 70 yo parents in our family home, at present I can't even afford to pay them some board. I start work again next week, but I'm scared that it might physically very taxing. The income will be very welcome though. I am hoping to be able to stash a bit of each pay, for a "just in case" fund. I would prefer that our govt recognised the ongoing costs of chronic illness and allowed all of us access to bigger rebates for Drs fees and prescriptions rather than only assisting those on pensions, govt payments. They could look at classifying chronic illnesses so that with a Drs referral we could get access to the system of cost assistance. I can't see it happening though.

Keeping out of the sun is the only way I can limit my UV exposure, I wear sunscreen everyday and a hat all the time from spring to winter.

Keep well. Greetings from Western Australia.

Kat

[Cathyan in reply to Kat136]

Hi Kat136. Thanks for posting about your situation. I'm so sorry, and horrified to hear how much you have to pay yourself for essential care. I had no idea Australia's health service was run like that.

I'm so sorry to hear about your stroke and wish you good luck for your return to work next week. How difficult it must have been coping with even the administration of getting the care, let alone the expenses. My little moan about people deserving grants for equipment and sun protective clothing sounds a bit pathetic now!

[Kat136 in reply to Cathyan]

Not at all, we all need the sun protection, it's not pathetic at all.

[stiff19 in reply to Cathyan]

Not pathetic at all 🙏x