So. As some of you know I was diagnosed with sero-negative Rheumatoid Arthritis in December and started on MTX. Then in January my Rheumy upped my MTX to 20mg from 15mg and added in HDX, 200mg bid. I was admitted to hospital on Mothering Sunday weekend with a suspected flare up (high temperature, not able to move, suspected Mengingitis by A&E, high CRP, dehydration) and I've not responded to the current treatment very well at all. Frequent flare ups, fatigue that's crushing, pain, normal stuff really. I'm finding being a Mum to my beautiful 2 year old twins very very tough. Today, has been especially hard after a terrible weekend for me. Came back from Portugal, we went there for 1 weeks holiday, on Saturday and have been terrible every since. Had my wonderful husband's help for over a week so today was tough, without his help. Just turned on the TV and they watched TV. I feel so helpless and fed up. Seeing the lead Rheumy nurse tomorrow to discuss Biologics, fingers crossed. I was started on MTX injections a couple of weeks ago too (luckily injections don't faze me as I had 2 rounds of IVF for George and Sophie and I was a veterinary nurse for 8 years) and I saw the most wonderful nurse (one who was kind to me in December, who I mentioned in a post then!). She remembered my Mum, remembered how Poorly my mum was, in fact all the rheumatoid nurses at the hospital remember Mum. How lovely was that, for me to hear, just wonderful to remember Mum, and discuss her fabulous sense of humour! She knew how to laugh at her Rheumatoid and the trials and tribulations it bought her. Anyway, because they remembered my Mum, the nurses would like me to start on biologics as they don't think I've been hit hard enough with drugs. So tomorrow mornings appointment is an important one for me. Biologics vs another, 3rd DMARD...I will find out tomorrow. Fingers crossed I sleep better then last night. Even Amytriptaline didn't help me last night, plus paracetamol, naproxone and tramadol...Life will get better...?! It must do?! My neighbour and my cleaner (well, she's more like a housekeeper/kids entertainer) had to cook tea as I couldn't even peel a potato. A low point.
Anyway, if you've read this far, Thankyou. This RA journey is a tough one. Oh, and im thinking of writing a blog as I find writing theraputic. Plus, I've had to wave goodbye to a career in Midwifery and face facts, that will never happen....the realism of RA is striking me.
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jlmack
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You are truly remarkable how you are coping with young children and everything you are going through is beyond me. I am sending you as much love and hugs one can over the internet and hope a break comes soon to you and your family. Write your blog I will read it. God bless your neighbour and hubby too! Keep us posted on tomorrow.x
Thankyou. Your reply has brought a tear to my eye. Gentle hugs to you too, virtual hugs are sometimes the best, especially from those on here who truly understand. Joanna x
Oh bless, I didn't know the twins were results of IVF. I had IUI & six rounds of IVF. Life will get better I'm sure of it. Let us know how it goes tomorrow won't you & hope you have a better night tonight. x
I don't know how you cope as well as you do, I am forever thankful that I had the chance to bring up my children before RD struck. I find it hard enough to cope with my grandchildren when I am not at my best. The worst thing you can do is to beat yourself up, I'm sure that a day watching tv isn't fatal!!
How lovely to be able to talk about your mum with people who remember her. I'm sure that she would be very proud of the way you're coping. She would understand how hard things are for you at the moment, and I'm sure that she would want you to look after yourself as well as the twins.
Good luck with your appointment tomorrow, and please don't give up hope, with the right treatment you may yet have the chance to achieve your dreams
Gentle hugs, and I think a blog is a terrific idea. Writing is one of my main coping tools, and I, too, find it therapeutic. I think you're coping admirably, and I'm so glad you have the supports that you do. More than anything, you have a truly remarkable spirit that shines through in what you write. RA can't tarnish that kind of shine, you know, it can't even touch it. xx
I think you are doing really well, keep pushing through this hard time. I keep telling myself things will get better, it's hard enough with the pain and weakness then fatigue hits you like a ton of bricks. We are all hear to support you and I've found offloading on here very helpful as we all understand each other. You sound like you have a lovely supporting husband and a lovely family, take it easy and focus on the good things in life. I think writing a blog is a great idea and I'de like to follow you.
Good luck, I've not looked back since starting a biological. Wow two year old twins, a lot for anyone without adding RA. You must be amazing, once again good luck.
.Poor you! What a plight! I can fully understand your despair, but it Will get better. I can hardly move myself right now, but wanted to send you a link to onemomentmeditation . You could google it. I find it very helpful. I signed up to the course, but even just following the animation might be valuable.
You sound very much your mother's daughter, what a comfort that you enter the field with that provenance . Gentle hug Jora x
Don't give up on the career path just yet - yes it might not be full time. Hopefully if you can find the right treatment that will work for you and that can be a biologic - they have worked the best for me in the past you should be able to lead a near normal life. Farm
Big hugs jlmack. What a plateful you have, RA and twins. Such a tough road for you at the moment. I really hope they can find a combination that works for you. I have been trying stuff for 3 years now and just started enbrel. It has helped greatly with fatigue and some measure of improved movement. I hope you can find some relief soon
Wow. What a lovely group of people on here. I know you are all lovely, but to read the comments above, well, Wow. I will. Let you all know how it goes this morning at duh, duh, daaaaa....11:30. Thankyou all again. I will post the blog site once I'm happy with it! 😀
I hope you feel encouraged by the wave of support from all these positive replies. It is a truly crappy disease, but it sounds as if you are being looked after well by a great Rheumy team. I am a Mum of 3 with RA. I've been on Enbrel for 6 years and it's made a huge difference. But there are still times when all I want to do is rage at the unfairness of it all. Please please write a blog. I've been having a bit of a low patch due to RA related hand/wrist surgery and I've found very little help on the Internet really. There are a few blogs, but I really wanted to read a blog about someone my age (40 ish) with kids. Writing is very therapeutic and a wonderful way to not feel so alone with this disease.
I wish you lots of best wishes and hope that the biologics make a difference.
Good luck today .. Hopefully they find the combination of drugs that work for you .. There are lots of ups and downs with Ra but don't yet give up on your dream to do midwifery just yet .. I am a nurse also and even though it can be tough it gives me something else to focus on apart from RA !! . Sounds like you have a really supportive husband and a really good neighbour !! .. A blog sounds like a great idea and I would definately read it .. 😃
Hope you get a good result today. Maybe midwifery just needs to be put on hold for a bit? It's amazing what a difference the right drug combo can make.
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Sooo Frustrated!!!
Psoriatic arthritis
