Subject: in need of a moan

Im 24 have 2 children and have RA, Fibromyalgia and am on 20mg methotrexate injection, pregabalin, paracetamol, tramadol and nefopam (all high dose) and now im awaiting a nerve conduction for susspected carpal tunnel and an appointment at the eye clinic as i have small hemmorages on the back of my eyes and eye pain.
ive been on MTX for over a year now and for all it is helping me in the sence that bloods results are very stable (altho obviously abnormal), i am finding it quite difficult comming to terms that if my partner and i were to have another baby it could be a very major thing for me as id have to stop the meds for 6 months and thruout the pregnancy and then rick having a massive flare up afterwards as i did with my 2nd baby. (first moan over)
another difficulty i have is with my rummy. He is ment to be a very good rummy but he just doesnt seem to listen about anything other than RA related things. When i was 17 i was looked at by another rummy for susspected AS but becaue it wasnt advanced enough and i am negative for the gene he said it would be a case of wait and see and i was left with a diagnosis of degenerative disc disease. so gradually over the years my back is becomming worse MRIs have shown i have shoen i have 2 nackerd discs and i keep reporting that my neck is becomming painful, ribs when breathing deeply amongst other new problems. Im just so frusterated and ticked off that it isnt been investigated AT ALL!
im sure its my age, people and docs just look at you and see you are young. just wish non arthritic people would understand better...its not just 70+ people who get these horrendous diseases!
moan over, thankyou for letting me vent off some steam :)

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Subject: Re: in need of a moan

Hi Kirst :-) Just wanted to say I am so sorry that you are having such a rough time of it. I am in my fifties and have struggled to come to terms with RA so I admire you very much for coping with this at such a young age and with children to look after. It certainly can't be easy. I hope you can get your Rheumatologist to listen to your concerns at your next appointment. Could you take someone with you? Or even phone your rheummy nurse or book an appointment with him/her to discuss these physical problems you are having and how they are affecting you. It just isn't right that you are being left like this. As Gaynor said you are the one living in your body and know best how you feel and how much pain you are in. Make them listen!!! Take care....x

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Subject: Re: in need of a moan

Hi Kirst,

Ugh. I am a mummy with arthritis too, first time mummy with an 8mth old son. I had arthritis since 15 mths and my hubby has it too. It is difficult looking after little uns when feeling ill so I really feel for you. I wonder if you just need to go in, big smile and say right now I need a neck x-ray and I want some decisions made or referals to a specialist. I never go in looking the patient, I always go in looking the customer and never get the run around, I guess I have watched my mother do it for me when I was little. My neck went oddly enough when I had Christopher, some kind of bizzare nerve thing started so I have said the above and off I am now to Frenchay specialists. It is so hard to play this role when you know you are the patient but I have watched many friends who didn't have pushy parent power and they are very ill now, arthritis is a quick illness and if you don't run ahead of it it can get you, often you have to make doctors run with it.

Other ideas, just ideas, I have a tense machine which helps, would that be an option? Hot water is a given I expect you know that helps already.

Right well Christopher is Mr sniff today in case you are interested I have written a blog for arthrtic mummies and daddies, well actually for any physically disabled parents with ideas on parenthood, please come along as you might have lots of ideas to help others too, the site is in its infancy but it is so flipping lonely being a disabled mummy, a lack of knowledge from professionals or big baby organisations is really shocking so I am doing something about it for other mums who have been in our positions.

http://disabledpositiveparent.blogspot.com/

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Subject: Re: in need of a moan

Hi Kirst,

Just checking how things are really, I am in flare now but apart from the first three months being difficult in pregnancy to come of meds, the rest of the pregnancy was very easy for me. Pregnancy hormones seem good for creaky folk like us :o) I don't know where you are living but check on the internet for a center of excellence near you, mine is Bath Min,I go there and they usually are fairly capable people although I have grown up with them as a child so they now get I am able to just say what needs to happen to me,I usually turn up with a to do list for them. However they are fab, there is also UCLH and an excellent team in Sally Oak in Birmingham, I guess though, it is down to the individual doc you get as well,if you find a registrar rubbish ask specifically to see the Consultant and to have that put on notes that you only want the consultant.

Above all hope things are feeling a little better for you, I know as a Psychologist that chronic illness can also cause certain chemicals to be released in the brain which can mimic depression or a low mood feeling and I know from experience I can one day feel happy, next feel so annoyed with every thing and every one, especially if I am trying to lug my 8 mth old son around all day who is feeling fed up and then have to see friends or family with their inane problems, haha how sympathetic I sound, come to Carrie she makes a great Psychologist but only on some days hahahaha.

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