With the New Year fast approaching, just wanted to find out more how your year has been with RA. Do share your thoughts; reflect on your highlights, your downtime and memorable moments, then hopes for 2019.
My downtime, was hoping to be in remission and somewhat disappointed that despite feeling I did things right, in terms of my eating plan, I was still free falling. The wretched spread to my left foot, then hands. The changes in meds to along with my rheumatologist words to me as I walked out his door. ”I don't know what to do with you, Happy Christmas”.
Highlights - I got through the year, yeah, enjoying Christmas with minimal pain was a real blessing. My fabulous family whom I love dearly, along with my beautiful cats and people on this forum who inspire me with hope and laughter that soothes my soul - thank you!
2019 🧘♀️🏽🎉 continue the journey to heal and feel better. More me time for sure. Wishing everyone well now and for the year ahead 😌
Written by
Hessie5
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well in a nut shell sh-it for me, as its when I came down with RA :O) 2018 I will remember pain, not being able to get out of bed, not being able to walk down stairs or up, not being able to go to my daughter when her cat got put to sleep, or a concert my grandchildren where in, or deliver xmas presents to my son who lives a way from me, or go to meet inlaws for a meal, but also know how much I am loved and supported and to got to keep smileling and knowing I have people on here who understand and support with love, kindness and advice, thank you
2019 I am going to go into remission, and will wave goodbye to RA, but not to you lot
I so love your direct approach with words, your classic opening line, had me splurge my tea over the cat! 🤣 - I am not laughing at you, just with you, ahhh such therapy! Thanks for sharing your insight. Let 2019 be our journey for remission 😁
Like you 2018 has been a roller coaster year. I had surgery on my left foot and some infusions for the pain fro fibro which didn't last long sadly. I had to stop two of my meds due to the fact they had stopped working. Waiting for biologics, but fue to a tb blood test i had done come back iffy i now have to see the respiratory team before i can start them. This has been a year when i have had so much pain and to be told my body was riddled with Arthritis and his mates was a real shocker i can tell you. Also hubby has been unwell,he was sent to the hospistal to get sorted out with his hernias and to have a colonoscopy as he had a lot pf polyps 14 to be exact no wonder my man was in so much pain. We both end the year with skinking colds only mine needs anitbiotics because i have a chest infection. So with that note i wish you all a happy and peaceful new year and hopefully a healthier one for all of us.xxxx
What’s great, through all this we have been robust with our mind and actions. We fought (an still do with untold pain) - the resilience with many on here is admirable, as we still all manage to find the time to contribute. I wish a ton of health and happiness for you, your hubby and family. X
Was going well, foot operation done to super dancing feet and a couple of tropical holidays and life normal, walking and rambling and all the normal stuff then bang Ompeprazole after four years gave me kidney failure. All RA meds stopped so the RA is back; its no joke !lol
Highlights son climbed Everest (not my credit but chuffed he made it and met Ben Foggle). The Crimbo was good although as tired, not as riotous as usual but so many get well cards and visits it really made me realise that life is more about those we love than looking at the negative side of stuff. I've had RA for a while now and yes it is something I'd rather not have but as a half full glass person at least it won't kill me. For several weeks things were very bleak but we're so lucky here as the nhs does really come through at the worst of times. Best bit coming home to sleep in own bed and worst bit is thinking that tomorrow might not be as good as today.
I'm very lucky and think so many of us are, yes RA and other diseases do affect us but mostly we are able to still enjoy life, when so many live in poverty or are homeless etc. i'm also interested that RA apppears to be in the archelogical record so I wonder when and how it first came about.
Your story is so poignant, with great accolades along the way too. It stirred in me how much we need to just sometimes take stock and be thankful for what we have.
I too would be interested in the archaeological findings, just wondered how they coped in those days!
Thanks for your story, here's to a stronger 2019 for us all.
Ups include starting methotrexate and finally getting rid of 90 % of the crippling brain fog.
Downs include starting methotrexate and experiencing debilitating gastric and bowel side effects, which has resulted in a reduced dose and a creeping return of RD symptoms.
Ups include gaining access to my medical notes, as I had concerns re: my GP.
Downs include that my concerns were supported by unprofessional comments in my GP notes, now challenged in part.
Ups include rheumatologist finally seems to be listening after I presented investigative results which contradict her diagnosis.
Downs another year wasted by her medical arrogance.
Ups after requesting a referral to a clinical psychologist, she confirmed I am not anxious or depressed, but rather am interested in my health, enjoy detail and have a drive to make the most of my life. We worked in some adjustment strategies which are helpful.
Ups GP is seemingly perturbed that the clinical psychologist said I wasn't depressed.
Downs disappointment in the medical profession.
Ups I feel maybe I am being listened too and hope to move forward with treatment in 2019.
More ups than downs thankfully, long may it continue, your persistence is paying off! I find I have to be on top of things for fear of nothing being done. Wishing you an encouraging and brighter 2019. Hessie ✨
Third year of RA and at the start of the year, still feeling as if every day was a battleground. Living on my own in a city centre terrace house brought its own issues, including loneliness which led to self pity. All I did was stare at the four walls. I have no family at all and my business is my baby, but I wasn’t running that well either.
Fast forward to October when I started Benepali. This was a massive turning point. Almost overnight the exhaustion lifted - having previously had lots of energy, particularly mental energy, this was definitely a high point. Friends noticed it almost straightaway, as they said they could hear it in my voice. I am now making better decisions, making plans. This week alone I booked two holidays, one to Crete and the other to Norway. I’ve written marketing plan for next year and I have my mojo back. Am I still creaky? Yes, but not in pain thankfully. I’ve also come to an acceptance that I have RA - I’ve stopped pretending it doesn’t exist now which has raised my spirits and stopped my anger (that may in a way sound defeatist, but it isn’t).
2018 has definitely been a key year for me. My wish is that everyone eventually finds the right balance of meds that works for them and that with the onset of biosimilars, that getting approval for those doesn’t involve two years of brutal trial and error of cheap drugs that may or may not work.
This disease just pulls at our every emotion. So reassuring to read how you accepted RA wasn't going anywhere fast, this is what I fought with hoping my RA/D would miraculously just go away through eating well. It is only now I have accepted this is the new me and digging deeper on how to get better. I am still in that battle zone and yet to accomplish healing. I am getting to accept my pain. Your story has brought hope, on this tumultuous journey, we can find some calm. Thank you for sharing. Wishing you continued success and happiness with your business, health and life in general ✨
Awwww, thank you. I think it is about trying to find calmness. Every day I would feel frustrated that I wasn’t in the office, wasn’t doing what I was supposed to be doing. Apologising to everyone when I can’t do something as if this was my fault, that I must have done something really bad to feel like this. I’ve now reconciled myself to it being just one of those things. I think there’s so much blame in the media and from a certain section of people that it’s because we ate bacon/sugar/anything and that’s the cause of this/cancer/anything and that puts pressure on our mental health.
I hope you feel better soon and get some relief in 2019. 💕🤩
2018 has been one of the worst years of my life to be honest. I spent the first three months of it travelling the length of the country every weekend to see my sick and dying mother which really took its toll on my body and affected my own family hugely as I just wasn’t around for my two girls. Mum then sadly passed away in March and obviously I’ve been grieving for her ever since. She was a remarkable woman and had battled with RA herself most of her adult life. I still can’t believe she’s gone. Whilst grieving, my RA flared so badly I spent most of last summer and autumn in absolute agony - all my joints were painful but my neck especially which kept me awake every night for months waking every couple of hours. Emotionally and physically exhausted I saw my Rheumy team and practically begged them to help me as I was spiralling downwards with no hope of any relief. ThNkfully they could see how bad I’d got and recommended me for biologics. The whole screening process took weeks but then in mid November I started them and my life has changed for the better beyond my wildest expectations. Even after 2 weeks of taking Benepali I was no longer in pain and have so much more energy to tackle daily life. Occasionally I get the odd twinge if I’ve overdone it (particularly over Christmas) but I feel a million dollars compared to how I felt over the last year. I am hopeful for the future now as I enter my 50th year - I feel I can plan things which I couldn’t before and slowly but surely I’ll move forward to a better and happier me. Happy new year everyone.
Sorry to hear about your mum, this would be enough to send anyone spiralling. I hope you find comfort with treasured memories and your girls and know your mum is forever with you. I still grieve for my ma everyday. I find hope with her funny quotes and sayings that I relay to my kids, and picture beside my bed. Time is a great healer.
Glad you found Benepali (frustratingly my body said no). Planning is key, I have bought my health journal, so determined to do all the simple things RA has temporarily prohibited.
Here’s to a year of happiness and wellness beyond expectation! 💫 Hugs Hessie
Downtime: permanent osteoarthritis pain in left knee. Inability to walk any distance.
Highlights: Still in remission. Still exercising regularly. Getting a new knee on January 7th 2019. Now off all RA meds. Lots to look forward to. All the best to you all.
Well 2018 was the worst I've had in the 35 years since diagnosis. It really started at the end of 2017 when I had a massive flare following my flu jab and I've never got back on track since then. I've been on Enbrel for 15 years but agreed to swap to Benepali in Jan this year, by March I was in so much pain I begged to go back to Enbrel. My lovely father in law passed away in Feb and i felt awful asking my husband for support when I knew he was struggling with his grief. Then got a bakers cyst which burst and left me with dreadful pain in my knee. I then developed OA in both knees and this affected my feet and hips ( possibly because I was walking like a penguin for a few months). The only way I managed to get through this year was with a series of steroid jabs in either my knees or in the bum.
Good things:
I'm seeing a new Rheumy on Friday (hopefully this one might stay longer than 6 months) and going to discuss whether I need a change of biologic. I'm a bit reluctant because Enbrel has been pretty good to me but maybe it's run its course and I'm scared of the unknown.
I started taking Turmeric in the autumn and this has helped enormously with the inflammation in my knees and hands and with my colitis.
So to sum up, I'm glad 2018 is over and I'm sort of looking forward to 2019. Let's be honest, it can't be much worse.
When I read posts like yours it gives me a deep appreciation that I have had this for 2 years and boy it has been dire! 35 years, you are a champion in my eyes plus all the other life lessons thrown in is a toughie!
Whilst 2018 was certainly challenging, 2019 is going to glow with good energy! Wishing you nothing but the best .... Thank you for sharing, Hessie 💡💫
Well 2018 has been awful.....I waited nearly 6 months Jan-June (off meds) for a knee replacement which is still causing me pain, I then discovered I need a tooth out and one of my replacement knuckles has broken. I've just found out my shoulder has no gap in the joint and is ragged so referred to orthopaedic surgeon !!! So I guess 2019 is not going to be great either.... This illness is bloody awful and I often feel like giving up... but I'm still fighting With the help of my family. I Hope everyone has as Happy New Year and keeps as well as possible. X
2018 has certainly been challenging for you, RA pushes us beyond belief !
When I am in excruciating pain I really want to give in, despite my tears, the Leo ♌ in me wouldn't allow it. Nor my family. When I struggle to now hop up and downstairs to get to the office the other side of London, I hear my kids willing me on, it’s the only way that I get through this awful disease.
Wishing you a ton of good health along with bags of happiness for 2019 🔆
A bit rubbish really. Started out the way it meant to go on with 3 days in hospital with gall bladder trouble (and later removal). Became increasingly immobile and in stupid amounts of pain. Then, in June was prescribed Sulfasalazine alongside the MTX and miraculously got so much better for a few months. I was elated! Then, it all came back as bad as before. The nurse said it probably wasn't anything to do with the new meds but just the steroid jab I had at the same time. Didn't even consider that because I've had them before and they've had zero effect. But this was a stronger dose apparently. Anyway, now as immobile and in pain as before and still got to wait another fortnight for my next appointment bc it got pushed back. So, not a great year. Supposed to be starting biologics at my next appointment but not risking getting excited again in case they don't work either.
Sorry to be so negative.
Hope you all have a good New Year and wishing us all an improved 2019.
Like you, I was not a fan of 2018. If I was to plot a chart it would scale a downward trend 📉 for my overall RA improvements to be honest.
Sorry to hear all you have been through, you come across as extremely brave in the face of it all as managing dealing with the cruel pain being inflicted. The frustrating part of this disease is that false pick you, quicky cloaked in dashed hope. It really is a journey of walking on glass.
I sincerely hope you get the reprieve needed from your new biologic and life in general. I am still waiting mine.
We are indeed being tested, and through it all, I remain optimistic one day it shall all click into place for us all.
Wishing you a much improved and pain free 2019 🎊 Thank you for sharing - Hessie 😌
2018 has been somewhat crazy! Big operation on my neck in February, a success so worth it! Two further ops! Started Baracitinib in the summer and it has done its job better than previous meds but not as good as the mushrooms! Haha. I'm perhaps a bit early yet in giving feedback but so far so good! Into my third week. Nice break away with my mum to Cyprus in October. She has dementia but doing well. The sunshine helped us both and I am encouraging her to eat more mushrooms. Doesn't care for them too much. Fortunately for me, I love them! Lost two pups in December 😢. I will continue with my healthy diet and exercise. I will try to rest more and learn to say no to things! I hope my wish last night comes true and that the folks I was thinking of have a very happy and healthy New Year! Xxx
Hey Shalf - you certainly had the ups and downs which you dealt with so very eloquently. Great news re Baracitinib working and mushrooms. I believe 2019 is going to be a better year I really do - let’s continue to progress with vigour. Take care of family, look after you and big hug to Rocky. Let’s get 2019 ready ✔️ x
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