HOPE

HOPE

This is a few months before I was diagnosed in 2015. It's day five of a very long seven day race in the Pyrenees. I thought long and hard about whether or not I should share this but the long 18 months it took to finally find relief was made immeasurably better after reading stories on here about people who eventually found a way back to some semblance of normalcy, The inspiration I gained from the positive posts on this forum gave me hope that I would be ok. Different, but ok. I found a combination of drugs that is working at the moment and the least I can do is let others newly diagnosed know that for many of us it really does get better and not to fear the medication.

My identity was always tied with sport and movement of all kinds. When I woke up one August morning and found myself scooting on my rear to the toilet unable to brush my teeth, hold a hair brush or lift my arms over my head I panicked and became an emotional wreck.

There was a long road of many doctor visits prior to that day in August that never even warranted a blood test. I didn't have textbook inflammation that doctors are all taught to look for and was left with the recommendation to slow down and accept that I was getting old.

It was years later when it finally presented in my hands that I realized something was terribly wrong and went to a new doctor and was given an MRI which revealed bone erosions in three knuckles and all of my toes that was unmistakably RA ( Bone erosions from RA are very distinctive to any other degeneration) I have a rather aggressive form of RA, or so I was told, and it took awhile for me to understand what that meant. I thought everyone gets bone erosions. I thought everyone had difficulty making a fist or tying their shoes. I thought that eventually everyone tests positive for anti CCP. The truth is there are many variations to the same disease.

In the beginning I wanted to eschew drugs. I dreamt that if I slept in fields of kale and quinoa, munched on spinach and turmeric and showered myself in fish oil I would one day wake to a new miraculous disease free self. I'm so grateful that I chose to trust my Rheumatologist and take Methotrexate and Humira along side trying a popular anti inflammatory diet. It took a very long time for the DMARDS plus a switch in Biologics to work and all the while the diet was doing nothing. I stuck with the scientific, overpriced, toxic, corrupt medication that Big Pharma offered and for now there are no new radiographic changes and I truly believe that science rocks.

I'm cycling again and not just a few miles around town. I'm actually back up in the mountains and after more than a year of failed attempts and being left behind I am once again in the pack. I won that race in my category a few years ago and I won't lie and say I'm back full go and racing again but I am back climbing in the mountains for hours on days that are good and walking on days that are not so good. Please be kind and know that even though I may seem better off than you because I can cycle and walk I lost myself just like all of you and the struggle is real. I'm also very aware that all this may change tomorrow but I refuse to give up and only wish to encourage others to do the same.

There is a quote from the book "Tuesdays with Morrie", about a college professor dying of ALS, Lou Gehrig's Disease, where Morrie says, "But there are days when I'm depressed. Let me not deceive you. I see certain things going and I feel a sense of dread. Sometimes in the morning, that's when I mourn...and I mourn what I've lost. I give myself a good cry if I need it. But then I concentrate on all the good things still in my life."

I hope this helps someone newly diagnosed feel just a little bit better.

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  • Thanks for this post, it is really encouraging. I've not long been diagnosed with psoriatic arthritis and have an appt next week to get started on sulfasalazine. At presents things have not been too bad but there are times when the pain/swelling seems to stop me doing all the things I love-running, crocheting even singing! But I also know that I am still able to do these things in between the bad days and I hope the meds help matters! I like that acknowledgement of seeking after all sorts of things that might help-I feel in that place but I hope in time this will fade.

  • Hang in there girl and have faith that you will find your way again. Trust your doctors but keep educating yourself as much as you can about Psoriatic Arthritis without freaking yourself out. There are so many people on this forum that have loads more years than I do and a wealth of knowledge that they share freely. Be grateful you found this place. I wish you well!

  • Hey Lucy11

    Wow I read your story & it's so inspiring. Thank you, I'm glad you are in a place where you can enjoy life again. & you have the right attitude after everything you have been through. I've been unwell on & off for 7 years & im finally having investigations & diagnostic tests to confirm GPA/

    Wegener’s Vasculitis. I'm right back at the beginning, not on any treatment yet & just waiting for biopsies etc. But as it's early yet still 7 years on I hope to one day have my life back. I suppose you have to fight for your life, I'm taking the good with the bad, happy & the sad, each day is a battle & I will not let it beat me. It's that get up and try again Motto. Thank you for sharing your story & good luck now & in the future, ride the wind :) & I love that quote too. X

  • You're a sweetheart and a fighter, Laura, what a great combination! I do hope if the biopsies confirm your new diagnosis that you'll be well looked after and they get you on track to feeling better soon. Big hug to you.

  • Aww thanks ever so much Lucy, so kind of you to say 😊were all warrior queens in my eyes :)

    Hug coming right back at you x

  • For no good reason while reading that my eyes developed a suspicious sheen and might have leaked a little.

    Thank you for sharing this account with us. :)

  • How very kind of you to reply as such. Thank you. :)

  • That's such a lovely tale and very encouraging.

  • What a lovely, uplifting, inspiring, brave post Lucy. Thanks for posting 😊

  • Science does indeed Rock Lucy & you're living proof!! I am so pleased you're back in the pack & well done for persevering. No doubt it's meds that have got you back there.... & determination to return to the life RD halted, not stopped because I don't believe it wasn't ever going to stop our Ironman girl. Just one thing, I wish we in the UK had the opportunity to go to biologics from just the one DMARD but that's down to location, your passion landed you in the right place! Thank you so much for posting this, it will give hope to many here. You rock too! 🚵🏻🏆

  • From day one of posting on here you have always been a shining light. Thank you for caring as much as you do for absolutely everyone on here and for sharing the wealth of knowledge you have. While at the bottom of despair , when I hurt the worst, I could always read one of your replies and feel better.

    I almost stopped visiting this forum because I felt incredibly guilty for having Biologics much more readily available to me. There were many times I wanted to ask a question but felt undeserving after having found out what others living in the UK must suffer through just to qualify for a Biologic. I'm angry beyond belief how antiquated the NHS seems to be and I'm so very sorry for that. You are one person that doesn't make me feel ostracized. Thank you so much for that NMH!

  • Aw, you're so kind Lucy, thank you. Please don't feel guilty for receiving meds which make you feel so well. Yes our system is archaic but when the NHS was set up in the late '40's treatment such as biologics & the cost of them was unheard of & couldn't be anticipated. As a result they have no choice but to apply for individual funding from the local CCG, little surprise the eligibility process is so strict & a postcode lottery. Still it doesn't seem fair to many in the position of needing them, going through the process is often gruelling. Yes our medical care is free at the point of delivery but the system is now struggling whereas your Santésuisse is fiscally buoyant as it's different in that you pay for medical insurance no matter what your age, 99% of you pay for it out of your own pocket, no employers contributions. It's well known that the Swiss have one of the best healthcare systems in the world, enjoy it, it's probably better than at home for you. 😀

  • Really chuffed for you! Brilliant!

    Yeah, meds are OK. I can now walk. In fact I'm off on a solo charity walk (well with dog) in June. Sixty miles. Did the first 30 a couple of months ago.

    😄😄😄

  • Nice! 60 mile walk?! Wow, that's awesome :) Go Nettac!

  • Very positive post to read :) . Keep on biking!!

  • Will do, if you promise to keep on inspiring all the people you do :)

  • Well said Lucy and well done too! It's really nice to hear such a positive, encouraging post , newly diagnosed or otherwise .

    Marie

  • Thanks Marie, I've gleaned a lot of helpful information from you. It sure helps when we all support each other. 🌺

  • Wow Lucy what a great post/photo - a big thank you - you continue to encourage and inspire ! Love the "showering in fish oil" !

  • Hi Swisslass! So nice to see a reply from you. Are you buried in snow up there this morning? We got loads of snow yesterday. Flowers are crying today.

    Big hug from me

  • Yes it has snowed here for 3 days ! Today was bright and sunny but cold ! I know I don't post much- either don't seem to find the time after reading all the posts for ages and if I need to ask something can usually find the answer somewhere from previous posts.

    Hope you got your plants well covered it is due to be frostier tonight.

  • I will never complain about snow again after reading this. lol

  • Great post! Good for you. I have recently started with a personal trainer to get back some kind of fitness after almost 2 years "off exercise" following a big flare coinciding with tearing The meniscus in both knees. Never known anything like it in 10 years of RA. I had a real low point thinking that I would be needing a walking stick forever on and immobile, but biologics, physio and time has got me virtually back (albeit knees are damaged and will need replacing but in the future). Last night I went to see Bruno Mars in concert and on the way up on the tube I felt fantastic when I could see how far I had come, doing stairs, rushing around in crowds etc. So, yes there is HOPE!! (I do have sore knees today though but expected!)

  • I'm so happy to read this Mimi! When the despair rolls on day after day from not being able to move well it often takes a village to get us back to feeling better and getting a personal trainer can be a part of that village 😀 I hope you continue on fighting through crowds at a concerts and maintaining the ability to do what you love doing for many years to come.

  • Wow thank you thank you !!

    My story is similar to yours and I've just got back on my bike 🚴

    I was sitting here thinking about whether or not to go on a bike ride with my friend along the canals .To be honest I was contemplating pulling out having just arrived back from a long flight from Malaysia yesterday

    Yes I'm tired today but your post has just giving me the kick up the butt so to speak .

    You are quite right in saying it can all change tomorrow ....so today I'm getting on my cycling shorts and getting my butt back in the saddle :-)

    Thank you 😊 once again and very well done 😘

    Fiona

  • ♥️

  • Well done Lucy. Keep on fighting & cycling 👍

  • Love the post and message of hope and delight.

    Thanks

    Ali

  • I must thank you as well. There were many post of yours that helped me hold on for brighter days.

  • Hi Lucy11, I loved your story of strength, courage, and perseverance. It has come at a good time because I need inspiration. I also got diagnosed in August of 2015 and I have struggled this whole time. I love to jog, play tennis, row, cycle, swim, lift weights, snowboard, and surf. I am highly energetic and in these 18 months I feel that RA is trying to limit me. I cried when the doctor told me I could not run, not yet, but after awhile he gave me the okay. I get where you are coming from. I am still struggling to find the right medication. I am on weekly Humira and going to restart MTX. Just last week, I had a melt down and wanted to be done with all of this RA stuff. Don’t get me wrong, I love and trust my Rheumatologist, however, I am tired of trying drugs, their side effects, and constant communication with my Dr. office. I just want to be free of it all. I keep trying to accept who I am now and work within my constraints but it’s super hard. I am currently working with a trainer to get me fit for surfing season. I will keep pushing through pain and aches to do the things that I love. Thank you for your inspiring story. I am happy that you got your mojo back

  • Oh yes, it's super hard and I'm right there with you. I have done many Ironman races but had to give that up earlier as my feet are pretty destroyed. I'm still getting out there and trying to jog a bit to help ward off Osteoporosis but man it's hard to switch gears. All I know is that we really need each other from time to have palace that we can come home to when we're feeling at our worst and reach out and help when we're feeling at our best. Thanks for the reply and chin up! You're mojo is waiting for you.

  • Thanks Lucy!! My mojo comes and goes!! I wish it would just stay forever. But on the days that I have it and on the days my body gives me power, I thank my body for everything it does for me :) I restart MTX tonight, inject humira tomorrow night and I am nervous that I am going to be fatigued off my mind all weekend long, I have a tennis match. Oh well. I just have to take the bull by the horns!! Keep inspiring! Keep climbing!! Stay Strong. :)

  • What a moving post. Thank you so much for sharing. I'm newly diagnosed and trying to accept and embrace this new life that's come my way, and your words have both moved and inspired me.

    Exercise/activity was a big part of my life too, so I will mourn its current vacation but look forward perhaps to its return. Wishing you long and lovely cycling days.

  • Many thanks, Diane. I'm happy that I was able to make you feel a little better. You'll find your new normal and once you decide on a treatment plan that you feel comfortable with things will start to look up. I wish you the best.

  • Lucy,

    Thank you for sharing your story. I am truly inspired by your words and your experience. I read with delight that you are cycling again! I loved the book, Tuesday's with Morris, and I can relate to his loss just as you and probably all of us. Wishing you well, continued success with managing your disease.

    Awesome story!!

    Cindy

  • ❤️ Thanks Cindy. The very same to you!

  • Morrie... I do not like autocorrect! Tuesday's with Morrie.

    Cindy

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