Rheumatology and general life (needed to put it somewhere)

SarahJS

Hi All,

I don't know what I'm aiming to get from this but I guess I just feel I need to put this down somewhere and thought that this wonderful forum would be a great place to start. I've been living with arthritis most of my life (OA and RA) and always just take everything in my stride but it's crazy how things just suddenly seem to get so much worse. Obviously I wasn't in control of anything throughout my childhood and as a result, opportunities for treatments etc were missed as my parents were concerned. As an adult, I am in control and can now make sure that I am regularly accessing the care and advice that I need but I feel like I'm starting all over again.

I genuinely never see the same person twice which makes things so difficult, especially for someone who can't help but feel embarrassed (I know I shouldn't). I am currently taking naproxen, glucosamine and cocodamol on a regular basis and have had so many bloods taken I don't know who I am!

This Monday I saw the rheumatologist who was amazing. I had a full physical examination, she looked at pictures that I had taken of my hands, went over my knee xray with me, gave me physio exercises for my hip, sent me straight to bloods then xray for my hands and sent a referral for a scan. On the same day I was also diagnosed tendonitis and raynauds.

Admittedly, I've been on a bit of a downer for a while, and have been struggling a lot at work as my hands have never been as bad as they have recently. I'm a teacher and of course we do so much with our hands! Luckily I have amazingly supportive colleagues who are really pulling me up and helping me to find my bounce again.

It's strange that although there's just more stuff piled on me, or I seem to be stuck in the same place, every time I see anyone, I don't feel as scared as I have done. I think I'm maybe coming to realise that these are the cards that were dealt, and it's up to me how I play them.

frogmorton

Hi @SarahJS

I am so sorry you have been having such a tough time😕

It's so lovely to hear what a great team of colleagues you have at work to support you and enable you to manage your job as effectively as ever.

It sounds as though it's been going on for a while and maybe you have been going through the whole grieving process? Now you are at the acceptance part? Ok this is what needs investigating, but that's fine. I always think better to know what's wrong and what can be done about it than fear the unknown.

Well done you.

Take care and know there are plenty of us who understand ((()))

stellabean

Hi SarahJS I am sorry you have been having a tough time, it is strange how we feel we are coping the suddenly it all catches up on us. Seeing different people each time doesn't let you get to know them and they are having to go through all your notes to get to know you. I find it hard going to see new people but it does get easier with time.

I am glad you have supportive colleagues that is such a bonus.I find things are so much easier if people understand what you are dealing with and you don't have to keep explaining why you can't do something or need help. Getting things investigated at least enables you to know what is going on, if there is anything can be done and what you can do to help yourself.

Having taken groups on camping and hiking trips from my daughters school many years ago ( 8-13 yr old) I think you as a teacher are a superhero. Take care and we are all here.

Lilymary

One of the few bonuses of seeing different doctors all the time is sometimes you will come across one who takes you seriously and/or has a bright idea and sets of a more constructive chain of investigations and treatments. That's certainly been my experience on many occasions. It seems you have finally struck gold with your rheumatologist, and I hope this can be a turning point for you.

Unlike you, I'm relatively new to OA, but it's obviously been lurking in the wings for years before, and like you, it has very suddenly got very much worse. My ortho surgeon said it can often happen like this, and I'm just grateful it has only just started impacting my life very dramatically, rather than for years and years.

It's not surprising you feel down about it suddenly getting much worse. I'm normally an "in charge" kind of person too, and this has given me a huge knock back. I've had to reassess my life, and everything I do, as the old regime is no longer an option. It's ok not to feel ok about this, but for everything you have to give up, try to add back in something new to take it's place.

I'm pleased to hear you have supportive colleagues, that must be such a comfort. You teachers have had a Herculean task on your hand this last 12 months, and probably in the year to come, so even in full working order this would have been a tough time. Give yourself a pat on the back for having got this far! I think you're amazing.

SarahJS

Thank you all for your kind words. One of my good friends made a really good point the other day and just told me to 'own it'. He has a really good point, it's me and that is that!

Although I've been frustrated by the amount of different people I have seen, you have hit the nail on the head there @Lilymary and I have indeed struck gold with the rheumatologist. I think my appointment the other week was the first time I have truly felt listened to and actually taken seriously.

Also, thank you all for the teacher support- we've taken a great deal of bashing lately!

Sarah x