Just dropping in 😎

[Ali_H]

I thought that I would just drop in as I haven’t been on for a while.

I am one of the fortunate ones where I am able to start reducing my meds (MTX) without having tried various specialist diets or exercise regimes - and if I am frank without much medical support as I’ve not seen my rheumatologist since April 2016 due to them either cancelling appointments or quite frankly not offering them. I’ve had to turn up and say ‘I haven’t seen anyone for over 14 months and I’ve no appointment offered’. The desk has explained that the clinic is short staffed and I’ve seen the rheumy nurse instead (July 2017 and sept 2018- they tried to cancel this one on the day but I didn’t answer my phone and told the desk it was fair to mess my employers around like this and they got me in with the rheumy nurse again). I run my meds as I see fit when I’ve a cold, shingles etc as the help line is a chocolate kettle for those of us fortunate enough to work. My GP helps with what advice he can. Like I say I am one of the fortunate ones - I can have ice-cream etc and still teach the next day. I do get tired and I do get the odd hum in joints, muscles etc but nothing unbearable. Rheumy nurse agreed to try dropping from 20mg of MTX to 15mg and 2 months in doing ok.

I do take vit D in the winter, have stewed apples quite a lot with plain yoghurt, take turmeric and drink turmeric tea sometimes. I also have roast dinners, puddings and sweets! I have an electric bike which I ride now and again. I enjoy walking, gardening and attend a yearly 10 day silent meditation in the summer to unwind from the school year. I don’t have children, elderly or disabled family members to consider or worry about and my partner and I have taken to saving our holidays for the winter and get some continental warmth in February 1/2 term or at Xmas which helps.

So that’s where I am at for now and am hoping that my good fortune will last!

Thanks for reading and all the best to you peeps out there!

Ali

[Shalf]

Thanks for sharing Ali. Brilliant news! Is it RA you have? Has your symptoms been pretty much same since diagnosis or have you improved? Apples are my favourite fruit but never had them stewed in years! A lovely winter dessert :). I find stress makes my RA worse and I try meditation to resolve that. Unfortunately can't do Ashtanga yoga anymore due to damaged joints in wrists. I know the sun helps me so that is on the lifestyle change list. Keep well and thanks again for dropping by.

[Gnarli]

I'm truly thrilled to hear you are doing so well despite the singularly dreadful lack of medical support. What a shocking state of affairs it is just to abandon you and probably others. Whatever it is that working so beautifully for you I hope it goes on doing so. Hugs

J

[Hidden]

Fantastic news even though appalling care. Go well!

[VeronicaF]

A big well done!! I am so happy for you

it can't have been easy without the medical support

it gives us all hope when you hear someone has come out the other side!!

thank you for sharing your good news with us all

[Mmrr]

Lovely to hear that you are doing so well and thankyou for writing in a very non judgemental style, with empathy for those who are not so fortunate as yourself.

A really encouraging post and I hope you get better care in future.

[hatshepsut]

Long time no see!......really pleased to hear that you are managing to carry on, despite little medical help! It's encouraging that you are coping so well, hope I get there too. Take care

[Ali_H]

I must add that you peeps here are a big part of my journey around how best to support myself and it’s been the little tips like splitting the MTX over breakfast, lunch and tea times to reduce side effects.

My RA was caught early as the early symptoms were similar to rheumatic fever which I had as teenager and I though I was going down with that again. It took just from the April where I first went to my GP to the June for him to have done the relevant blood tests and xrays to diagnose RA. And then luck would have it that one of the GPs at our practice was also a part time rheumatologist at the local hospital so I was given a steroid injection and on MTX pretty soon after. Unfortunately both GPs are no longer at the practice but the ones I have had since do their best, supporting where they can and for the one flare I’ve had I got prednisone prescribed via the GP not the rheumy department.

All the best

Ali

[sjhewitt42]

Lovely to hear your positive post and that you are doing well. Your NHS treatment doesn’t surprise me at all, I am struggling and could write a book on the NHS failings. However, your post shows that in some cases RA can be well managed. Take Care, Sarah xx

[nomoreheels]

Hiya Ali, lovely to hear from you! We do wonder when someone who has been with us a long while isn't around so much so thank you for the update. Seems you're doing ok, despite the lack of support from your team but I know you'll blow steam if that does change, hopefully not for a long while. I do wonder though if they're checking your bloods or are they relying on your GP to do that?

Anyway, pleased you're ok & thanks for your update. x

[Uga35570]

I am so glad to here some positive news from yourself but the lack of medical assistance is just appallimg poor old nhs it's so under pressure. I am between two stools I see rheumy privately diagnosis was when we had private health insurance and g p who of course is nhs. Sometimes it is quite hard to coordinate the two and keep the peace between them. They dont come to verbal blows!! But their systems are so different. Anyway gripe over have a pain free and happy sunday everyone.

[Leics]

That’s so good to hear that someone is doing well even if they don’t have support from rheumy. Long may you continue to do well. It’s what we all pray for. If you do need to see rheumatology and they keep cancelling your appointments then if you get desperate that’s what MP’s are for lol. I had about 4 years of being desperate and having my appointments cancelled at least 10 times a year. I’m the last person to moan usually but I was in a really bad way at the time. A quick note from MP and I haven’t had a problem since. It wasn’t a decision I took lightly but it really helped.