RA travelling round my body with no Sat Nav to guide it,

Hi all A note and catch up from The Mansion dam Julie55 let it out the bag it’s just a house, sorry to those that didn’t guess we were having a josh; it started weeks ago on a garden blog of mine. Fun when it lasted.

I was even thought to be living in a park, as we had benches by the pond, but thats true. So my sorry tale of woe this has taken me a bit to write as I don't want it to sound like I'm feeling sorry for myself as I'm not but I am suprised at the speed the RA has damaged things when I have not taken the anti TNF and MTX, I was off 6 weeks then stopped the steroids finally on 13 June as I restarted the main drug programme again.

The RA has negotiated the difficult route into areas around the frontal lobe and then found its way into my eyes; I now have something called tear- film insufficiency. I noticed I’d got a problem a few months ago, on opening my eyes in the morning particularly my right eye the pain went off the scale, it felt like someone or thing was pulling my eyes apart, but after seeing a Dr privately through my extras on my bank account, (yes those freebies do work sometimes,) The Doctor explained that with a lack of tears, the eyes dry out and at night the eyelid gets stuck to the eye and they have to be pulled apart and when I open my eyes in the morning; this feels like the pain when pulling a scab off before it’s ready to fall off. Sorry:(

So drops and eye ointment for the rest of my days – Great!!

Then the RA has very rudely made itself at home in my spine, pushing a couple of discs out of its way and then causing what is called stenosis, this has happened in the last few weeks while I was off the Humira and MTX having the carpal tunnel op, which hasn’t been a success, and they are looking at my neck being the culprit that’s causing my right hand to be numb.

Now you may think bad back nothing to worry about but I have my bag packed with newly bought P.Js and a nightie, and my wash bag, and of course slippers. I have messages in my mobile that say come home now, and on my way to hospital in ambulance, these are just in case the spinal fluid is kept from circulating in the spinal column because the stenosis has shut off the flow. The signs will be I suddenly wee without realising I wanted too, or worse pooh, or my legs go numb or the area around my pelvis suddenly becomes fizzy and my legs are weak I can’t feel them and I can’t walk. We paid for me to have the MRI and see a neurosurgeon, I rung his secretary on the Wednesday and saw him on the Saturday it takes 12 – 14 weeks to see him on the NHS.

He asked if I had had previous surgery, he asked nothing about illnesses and medication I was on, I interrupted him and asked if he knew I’d got RA, the answer came back as he wasn’t interested in that just my spine, oh!! And my weight, how heavy are you, I told him, he said years ago we used to wire peoples jaws up and then they could only have liquids, or a 600 calorie diet. I kept quiet but the tears started to drip down my face, he didn’t want to know about the 3 years of steroids and recently, 2 steroid injections in 3 months to try and stop the RA, and he wasn’t bothered that I’d been in hospital having intravenous steroids last year. I know I’m overweight, I also know that I only eat twice a day, and sometimes not that, and that’s not good for you, he wasn’t interested how long I had had RA, I did manage to get his attention for a moment and tell him I was on Humira (what’s that) and Methotrexate why was I on that, hubs took over explaining for a while, as I was getting upset; but this egotistical, arrogant man was only focused on the bones in my back. I asked if he operated what would be the outcome, was it worth operating as I still have RA and as my spine had been damaged before in 2004; can the discs be repaired again; He said he didn’t know but when he had me on the operating table he would find out.

I left this eminent surgeon crying my poor eyes out; we’d just paid £195 for ½ hour of what I want to call abuse. I reported him to my GP and asked what I could do, I can complain but what would happen if I did? Would he take it out on me if I ended on his the operating table? I reported all this to my surgery. My wonderful GPs have suggested a 2nd opinion and have asked a neurosurgeon at Oxford to see me, he’s agreed and I’ve got an appointment on the 12th July. I do not want to have an operation by the very rude self- centred prat from Coventry. So in an emergency situation the plan is; I should always carry the disc and report with the MRI pictures on; then if something happens to my back and I don’t need an ambulance I must hightail it to Oxford, it’s about equal distance as Coventry from here. Then when we arrive at A & E we say we were out in the car when my back collapsed and as we were so near Oxford we thought it was best to come there. So please pray for me I need to see this chap in Oxford, and I don’t need an emergency situation.

If that’s not enough I have been through the directory of illnesses, I joke!! No, seriously my toes have started to go black and blue and have blisters on them I also have a rash that’s red dots some quite big and also what looks like eczema but not weepy. I saw my GP and he considered it urgent enough to call the rheumy’s luckily I had an appointment yesterday with the Trials rheumy nurse. When I told her of my toes, she went and got the consultant as he had a clinic, he agree’s that it is more than likely Vasculitis an inflammation of he blood vessels, it goes hand in hand with the eyes and skin. So I’m back on the steroids after coming off them after 3 years I had 3 weeks without them and a stunning weight loss of 4.5kg since 13/6.

So onwards and upwards and I’m so looking forward to meeting Julie and Ali (Summer) and all the other peeps at the lunch tomorrow.

Tricia Pxx

5 Replies

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  • Oh Trish, what a time you are having. I did reply to this blog but for some reason it hasn't registered so having to do it again. So sorry to hear your problems. Hope you get it all sorted soon and get better news. What an unfeeling chap you saw - glad you are getting a second opinion. I must admit if I get a referral to another consultant, they do seem to be up to speed on RA and will consult my RA chap if needed. I also carry the drugs cards with me and wear my SOS bracelet at all times. I too suffer from dry eyes but use Viscotears or something similar as needed supplied by our fantastic pharmacist in the village who is always so helpful. MTX day today and anti TNF tomorrow so will be well drugged up by Friday and ready for another week. If you find yourself in Norfolk and in need of medical help, can recommend the Norfolk & Norwich Hospital at Norwich and the Queen Elizabeth at King's Lynn. The N & N is a teaching hospital - I go there for the rheumatology dept which is marvellous. It is almost a 100 mile round trip but Himself usually acts as chauffeur as I find the drive tiring although I have done it. Yes Julie did let the cat out of the bag re mansion, chauffeur etc. What fun. We do have benches in the garden near the fountain which young lab is busy trying to demolish by chasing his ball round. Also digging up some of my plants - the gardener won't be pleased when he comes next week. Have put them back but don't know how long they will last!

    Have a wonderful time with Julie, Alison and the others. If you are ever Norfolk way do let me know. Take care. Much love. LavendarLady xx

  • Thank you, I think these few days are going to be such fun, and thats what we really need sometimes, I really believe in the old saying of laugh and the world laughs with you cry and you are alone; now on saying that, I do think a good cry helps sometimes, just let all the frustration out.

    I love the tails of the puppy our neighbour has a daughter with celebral Palsey (spell) Lisa is now 21, and she has a King Charles puppy that is being trained as a fetching dog for her, but he's so naughty he gets out and runs round the street barking at all the pussy cats who open one eye and look at him but don't move, He also loves icecream and when the icecream van comes up the street he goes mad and barks and cries at the van, and then Lisa's mum Carole will have to go and get Max a 99 with out a flake I think:) equally if you find yourself coming to Stratford on Avon let me know, I love the town and the river its a great place to live especially after 6pm when the tourist buses leave.

    Love xTx

  • I really hope you enjoyed the celebrations and that you get a good result from the oxford chap. I hope the one in coventry gets stenosis soon then he might be more sympathetic. I had extensive surgery for stenosis 2 years ago that was a success but it triggered the RA so I was flaring up before I even left the hosp hey ho thats life

    take care

    hope all works out well

    Sue x

  • I hope that you new doctor is kind and a person that will listen to you. I will be sending positive vibrations your way. I have had the same problems with weight gain, We are more than are weight! Wishing you sunny days and pain free nights. Take care,Hope

  • Thank you Hope, sorry I have not replied I'm very tired after my high jinks, at the Nras lunch and having Ali and Julie to stay.

    not long to go before I see Oxford chap ? ess the 12ths the day.

    I'll let you know,

    best wishes

    Triciaxx

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