Saw rheumatologist last week

palo Member Posts: 240
edited 3. Apr 2017, 05:40 in Living with Arthritis archive
Well, had my appt with the rheumatologist last week and am pretty depressed now.
His attitude was its just oesto-arthritis - suck it up - take painkillers, nothing we can do, come off your steriods, and go away.

I was diagnosed with myasthenia gravis in December 1999, was very ill for the subsequent 6 years till they got me stable on methotrexate (15mg weekly)and allowed me to reduce my steriods from 50mg daily to level now 7mg. Used to be in and out of hospital, went to a & e more times than I like to think, ICU and HDU many times.

At same time was diagnosed infertile and failed IVF treatments and had to come to terms with never being able to have children and being too ill to adopt.

Emergency hysterectomy in 2005, steriods induced cataracts surgery 2005.

Quit my job, downsized, relocated etc etc. Retrained and make cakes from home, since 2005.

Carpel Tunnel surgery 2010.

Now being told will be in pain for the rest of my life - feeling kinda p**d. Life has really s**d me.

Don't know how much longer I can continue to work as hands so painful, sorry just felling really down about the future. Afraid will run out of savings before I die - worried about quality of life I have left only 52.


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I don't do this often so brace yourself. ((((( ))))) Those are bold hugs and I hope don't mind my sending them to you. This is not good news for you at all, you have been battling ill-health for years and this is yet another set-back / kick in the teeth / insult / challenge (underline as appropriate). Yet again you have won the mouldy health cake with the rotten cherry on top - enough already, yes?

    Be kind to yourself over the next few weeks, stay in touch because I know that many of us have experienced similar emotions as we come to terms with a new low of dross. This forum is about care, information and support for its members, end of. ((((( ))))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Echoing DD's ((((((( ))))))). Life can seem like the absolute pits, and you do indeed have more than your fair share of ailments.

    It's unlikely that the rheumy meant to be unkind, but some of the medics we meet lack any real empathy .....happily today's young doctors are taught people skills, sadly their predecessors weren't!

    Do keep talking to us, we may not be able to help practically but we'll always listen and try to understand where you're at, sometimes just pouring it all out helps a little.

    I wonder whether there are any kitchen aids that can make your work easier, it may be worth asking your GP for a referral to occupational therapy, in my experience they are good listeners and have lots of experience of ways of doing things slightly differently that make tasks less painful on the hands.

    Deb xx
  • palo
    palo Member Posts: 240
    edited 30. Nov -1, 00:00
    Thank you drearmdaisy and dibdab

    I was referred to physio and they have done nothing yet, waiting to see a specialist in May.

    I do use every gadget I can and have a full compliment of mixers, the issue is the intricate piping, colour mixing and delicate sugar flower work that is now so painful. I am starting to look at alternatives, reducing services I supply moving over to shock/horror moulds and pre-made flowers, sigh not my standard, but if just too painful for me to do anymore.. There are always solutions i have found, just don't have to like them...
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    You have answered the question I was going to ask about your cake-making! I did think it might be the decorating that was the difficulty and got to wondering about moving into different types of cake and 'outsourcing' the fancier decorating. I have a wheat intolerance(but am not coeliac thank heavens) and so things like cakes are a problem, but a small cafe in town bakes gluten-free cakes, and also now dairy-free and vegan types. The owner also supplies cakes to order for birthdays etc.
    With the advances in catering for coeliac and other diets it's possible to make some really good cakes that most folks can't tell from 'normal' - favourites with everyone in the cafe(regardless of any dietary need!) are a white chocolate and fresh raspberry sponge, and a dairy-free lemon drizzle done in a loaf tin.
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    You've had lots of good advice so I can't add to that other than to say I understand where you're coming from, I'm 56 now and recieved my life changing diagnosis out of the blue 4 yrs ago. Since then a lot has changed, including my job, down to three days and a different less demanding role and a major change in terms of my crafting. I used to do (and was starting to sell), patchwork and quilting and was heartbroken when I was told I had to stop.

    I spent a couple of years trying out new things, finding something that I could manage and find satisfying, I now design and make origami flower jewellery and I'm building up my business. It's not always easy, I can only work in short bursts but I have found something far more unique than before.

    What I'm trying to say is take some time to rethink and evaluate what you are doing, as suggested look at cakes for different diets and look at new trends. Also remember that not everyone likes fancy cupcakes with lots of buttercream etc. What about traditional British cakes or seasonal cakes?

    Take time, it took me two years to find my new outlet, and be kind to yourself. It's not an easy journey (I've had a tough time recently), but it is still possible to enjoy life.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich