Sorry not narcissistic but if you have been at all concerned no need. I have just been so busy with doctor’s nurse’s therapists and specialists and an occasional plumber. I did write a blog called in search of a petticoat but my blooming little finger that is STILL numb hit the mouse and whoosh the words disappeared gone no more, so I've typed on word then copy and paste.
So pin your ears back.
Monday RA spec nurse only 1 hour late for appt. not bad really but the poor chap before me was packed off to hospital he was in an awful state.
So after looking at the wound site from my carpal tunnel I have been allowed to restart MTX and Humira, so I did Humira on Thursday evening, by the way I use the syringes as the epee pen was far too painful for me and I was always worried that I would flinch and that would be the end of that as the pen can't be reprimed. The syringes are small quite pretty mauve and pink and as you can actually pace the flow of the liquid it doesn’t hurt as much. The nurse also had a chat to me about my liver as my ALT has been really high 143 but in the last 2 weeks has come down by a 100 but there was a note from the registrar to say they would stop the MTX if I went over 150, I asked if there were any signs I should look out for if my liver was failing but apart from going yellow it is apparently an invisible illness that can send you loopy in the end. Lol. Maybe I have it already!!!
My 2nd appointment this week was a bit exciting I had arranged to meet a stranger a lovely sounding person halfway between our mutual towns well hers is a city mine is a market town famous for the river, the view of the church from the bridge and some old playwright called William... we met at a countryside park with a garden centre and a very nice shoe shop Pavers more of them later, but can I say I met Summer ‘Alison’ as I expected a very nice person with a good ski pole to aid her and a great sense of humour; we have both had RA for roughly 3 years; but I’m the lucky one as I live in Warwickshire and our hospital has good funding for RA Gloucestershire does not and Ali has not had the chance to try anything new but is being very brave and having gold injections. So we chatted for a good couple of hours then we went to the shoe shop I was after this years model of a sandal from Loretta a company that hand makes these sandals they are generally one colour with either embroidery to add different shades in shapes and flowers I’m in my 3rd season and still wear my first pair which are khaki green with a rainbow of coloured thread shapes, this years number are black with cut out flowers sewn over the front they fit perfectly and have a full heel back so no sliding out of them. Best of all they sell for £35.
I left Ali and we have promised to meet again, I then went home to wait for the plumber bathroom designer to call, as hubs how much I love this man said we I can have a bathroom to suit my needs. I’m just waiting for the final plans but we are having a very low profile open shower tray a high loo and lovely sink unit with a mirror that lights up and under floor heating as well as a heated towel rail. So going will be my orange 1985 fibreglass bath with matching loo and pedestal sink, an electric shower over the bath that cuts out if anyone else in the house turns the water on, we have a plastic ring with a shower curtain with ducks on it YES DUCKS, this is the second curtain we’ve had the first one had fish on it. So I’m after a very smart looking seat that folds down or up to go in the shower if any of you use one can you let me know make etc..
My hands have had it now so I’ll shut up for a bit and continue tomorrow, with the second half of my week, it’s a good job I’m still laid off from work as I have no spare time. Lol.
By the way I’ve ditched my old forum name and now instead of Travelgirl I think I should be Tenalady Love It.
Tricia xx
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no travel girl or tricia travel or tt as in tt races !!not tena lady!! it was great to meet you and thanks for the lovely compliment xx alison aka summer
Hi Tricia, the shoes look really comfy and very stylish too. Glad you met up with Alison I know you said you were going to meet a while ago, so nice to meet others with RA bet you had loads to chat about.
Keep an eye in the liver! looks like cutting down on the alcohol tut tut!!
Bathroom sounds great, best to have it the way that suits you while you have the chance.
Glad your back on your meds, couldn't afford to leave it any longer really.
My liver I do think raises with the alcohol I must get my blood rates out and see what the normal level is. By the way it's 7.30 in the morning and i'm up dressed and ready for the day, I just love Humira no problem with the MTX injection either not a nausea or headache in sight, but talking of sight my eyes are not good very dry i have dops from the doctor and I'm waiting for my lovely GP to write up my form from Axa PPP and then I can get a private consultation as my NHS appt is for August and I worry more about eyes. Thanks for being pleased for me about the bathroom i'm so excited I'm getting the OT out to make sure it fits the bill and also get her advise re support rails etc and bannisters up the stairs. I will keep you posted Mand and thanks for your support.
so jealous you met, how great for you! I have no friends with RA, although I suspect my sister has after recently examining her wonky toes!!! Those shoes look comfy! My alt was high for while but has settled down - Does it rise immed when you drink alcohol?
Hi Gina I have been very lucky as a couple of weekends ago I met Lyn and her many friends that came down to Warwick for the weekend, i sat in the car for a few minutes when i arrived and thought what am I doing this is a bit scary I didn't know what to expect I actually thought for a very brief moment that by seeing other people with RA that are worse than me and a lot are, that I would think there but for the grace of God go I; but I couldn't be so wrong I met the most amazing group of people with RA in so many different styles and forms as in some were in chairs others looked so well !!!!!! lots of walking sticks mine included but the best thing was the immediate acceptance that came from everybody that you don't have to be wearing splints or be in a wheelchair and you could look absoblooming beautiful we all knew and acknowledged that we have the same disease. Fun and laughter swapping of stories was the order of the day but there was a highlite for me; I met the most wonderful lady known as wonkeywarrior or Jennifer it wasn't her story of RA which is horrible!!, it was the fact that she has the disease is in a wheelchair but has found the energy and love to adopt 3 children; I learnt and took home with me so much knowledge from Jenni it has enabled me to understand and be aware of the problems we have had and may expect to have with a young man who is in the care of social services and lives with me and hubs since last July and he may stay on with us for another 6 months when he will be 18. I wish I'd met Jenni before as me and hubs have been to there and back with some of the behavour and we have pleaded for help from the SS but I think they kept us in the dark so we didn't know what we may encounter and then say we can't have him.
Sorry I got sidetracked Gina, alcohol does affect liver on its own but MTX with more than 3 standard glasses of wine can have bad effect. The liver will clean itself so not being on the MTX and abstaining has sorted it out.
Sidelining here ... sorry folks!! Just to say Jenni's older two are adopted and the littlie is her birth child, even more wonderful! An amazing lady with some serious problems ... not that you would think so talking to her
Lyn x
love it- love it- love it! the blogg I mean ( not the tena ladys which I have been known to linger over myself when at the appropriate isle!!!?????)
When we moved into this house 24 years ago it was my first house to call my own my Dad was in the army and hubs was a soldier so we lived in married quarters. The house has 3 bedrooms and an attic conversion, we concentrated on doing downstairs I was like a kid in a sweet shop abled to choose what colour to have no white or magnolia in this place, so the orange bathroom suite with the tiles with scenes of shepherds with their sheep and rural scenes was fine then and hubs couldn't see why I wanted to change it, so now I can thanks RA at least I get the bathroom I always wanted. I'll keep you posted.
xTx
Really glad you got to meet up with Alison, its great to talk to others with RA.
Sandles look really comfy I struggle like hell to come to term with shoes Im only early 30's so I hate not being able to wear heels etc, also Im very small so I used to always wear heels to look a bit taller. Lol
Ive found hotter shoes really comfy but a little more expensive around 60-70 but so comfy and fit my orthotics in perfectly.
Like Mand says keep an eye on your liver and drinking defo needs to be cut out by the sounds off it
Bathroom sounds fab, Ive had the builders in all week doing mine Im having a level access shower/wet room with higher toilet etc I too am having a seat built in on the wall but the builders have sourced the seat etc and just shown me samples, also in the next two weeks work should start on my stair lift didnt want to admit to needing this however its gonna be a big help on my bad days saves sleeping on the chair downstairs cause I cant make it up.
Hope starting back on your meds gets you feeling a little better.
As you might see it's taken me 24 years to get bathroom done thanks to RA i can, theres always a plus, I also had costs done for stair lift but holding out for a while I can feel the Humira coursing through my veins and feel so much better even after only having the one injection, keep us posted about your bathroom can you send me the company that the seat comes from.Take it easy just make the tea and don't forget the biscuits.
xTx
H Tricia
What a busy busy lady you are! I take it you're having a well earned rest now?! Great that you and Alison were able to meet up and spend time chatting It is good to be able to meet others with RA, not only sharing the common interest, but being able to support and develop a real friendship.
Your new bathroom sounds like it will be great and very worthwhile getting it sorted to your liking now. You're going to miss the ducks though ... surely?!
Excellent news that you are back on the meds. Hope the Humira kicks in quickly and you get some relief soon.
Sore hands today so typing is difficult, keep hitting the wrong keys Heyho!
I'm quite hypo the difference a drop of Humira makes does it feels amazing just like 18 months ago, I do hope it stays this way, but I'm going to be resting up still. I'm going to be Travelgirl againwe are off to France next weekend on a Somme WW1 trip, we did Belgian last year I find it very emotional those men were boys at least half were. we are going to be based in Amiens a town I have not visited so it will be all interesting and I'm sure good food and a drop of wine watching my ALT.
Hope your hands feel better today I wish I could send you my compression glove just the one, it does work 10 minutes and my hands do feel better.
re The ducks I might cut one out and frame it lol.
Hello Tricia me dear. Yes you had been missed but I have been wallowing in myown self pity... so I am narci whatsit too!
I too am jealous that you and Alison met up! I wish I could have gone to the lunch, but hope to make to the 10th anniversary do.
Bathroom sounds like the dogs whatsits and once again am very jealous but... I don't know how you can part with the orange suite!!! It must have been a very difficult decision (tongue in cheek :-)).
I do hope you can make it to the bash I have a couple of spare rooms we are only 20 mins drive from the hotel.
Now the bathroom I didn't mention the tiles they are farming scenes I have ones with Mr Shepherd not sure about calfy but definatly rural scenes, when we bash them down I can send you some to sell in your farm shop. They'll go down a storm, I said to Lyn that I might frame a duck off the shower curtain you could have the rest
Now hubs has got up he had a little lay in this morning I must go and sort out washing etc. In all this bathroom excitement I forgot to say we are off to French France next weekend to do the Somme WW1 battlefields so lots of hankies to pack. Keep you posted
Please rest a bit and hope you feel better I think the Prozac has kicked in I have cut the amytriptaline down to 75mg and feel better more alive,
the humira is coursiong through my veins and I do feel a bit more human a good dose of WD40 would do the knees, but we can't have everything.
xTx
well done you.. on the amitript and the prozac.. you seemed nice and happy/ bubbly when when we met yes be travel girl lol bot not tena lady thats bad.. think its the meds tht makes us need the loo lol xx
Thanks Tricia, Sounds like a very positive experience, maybe sometime will see you all. Have been asking Arthritis Ireland, could they not take a leaf out of NRAS book & start some sort of forum here, they only interested in 'Walks & Dances' erG!!! hMMMM - MAYBE i'LL START my own RA group in Dublin. LOL
Oh Gina we will have to get to Dublin to see you, by the way how did the shoes do or has the do not happened yet. We are off to france next weekend on a coach luxury hopefully. We have had the trip booked for a year nearly and we persuaded 2 of our friends to go the ones that got married Easter Monday. I said it could be their honeymoon we are doing a tour of the Somme and based in Amien, is Cece in France? maybe I could do a visit.
Sorry sidelining again! Gina, why not have a word with NRAS about starting a group in Dublin? I'm sure with some guidance it could be very worthwhile both for you and others with RA. It could start off quite low key and build up from there. If you want any thoughts (I'm a group co-ordinator) let me know!
The wedding went well and lasted a little while in the black patent peep toes! but changed to reliable flatties for walking and after the dinner, all went v well will try post photo later. Thanks for asking - have great trip to France hope weather nice and would love to meet you in Dublin sometime. x
post PIC of them HIGH shoes our gina.. perhaps me and tricia could thumb a lift to fair dublin town.. have always wanted to visit and i am sure I WILL ONE DAY!!
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lots of walking sticks mine included but the best thing was the immediate acceptance that came from everybody that you don't have to be wearing splints or be in a wheelchair and you could look absoblooming beautiful we all knew and acknowledged that we have the same disease. Fun and laughter swapping of stories was the order of the day but there was a highlite for me; I met the most wonderful lady known as wonkeywarrior or Jennifer it wasn't her story of RA which is horrible!!, it was the fact that she has the disease is in a wheelchair but has found the energy and love to adopt 3 children; I learnt and took home with me so much knowledge from Jenni it has enabled me to understand and be aware of the problems we have had and may expect to have with a young man who is in the care of social services and lives with me and hubs since last July and he may stay on with us for another 6 months when he will be 18. I wish I'd met Jenni before as me and hubs have been to there and back with some of the behavour and we have pleaded for help from the SS but I think they kept us in the dark so we didn't know what we may encounter and then say we can't have him.
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