Life, sunshine, imminent travel and RA peeping.

Hi All,

I thought I'd post a last blog before I head off on my travels on Tuesday.

I was in a concert yesterday and had a very hectic day with lots of lifting and walking up and down the hill in heels (relative heels anyway) and hospitality - not to mention standing and singing while holding heavy music folder. So not surprisingly I have that acid burning, sore sensation in feet, left ankle, right knee, hips, wrists, fingers and shoulders. But it's only peeping - which is really something when you consider how much I had to do yesterday with all these joints!

Tomorrow 9 a.m I have my GP apt and have to fast for diabetes and chloresterol tests plus have my MTX test and hormonal one re menopause (whether I'm through it or not). Also will ask to have BP taken again - never been lower than 92 (stolic rate) and heatbeat/ pulse has never been less than 84 and I've taken it every morning since I got the monitor on Wednesday. Several readings have had it at 114 and once it was up to 120 so I am concerned because I've taken it when I've done deep breathing, tried to meditate and focus on nice things (the weather, boats and birds) and 92 was as low as I could persuade it to go still. I've exercised a lot (walked 7 miles altogether today!) and eaten like a paragon of virtue as usual.

It has been really beautiful here and I hate to leave home in such beautiful weather somehow. I'm not good in heat and I love this weather so much because there's always a gentle sea breeze. It seems a shame when it was still snowing here a few weeks ago that I might miss the only summer we may actually get for sticky over hot places "doon Sooth".

Ah well that's all for me for a while folks although I don't actually leave until Tuesday morning - got a lot of hanging about in Edinburgh airport waiting for my Easy Jet flight to Bristol. Will be there for 2 nights and then by train to stay with my e-friend (artist) in the Welsh Valleys for 3 nights - commuting into Bristol to attend the opening of the show I'm in and talk to others about our "Art of Rejection" project.

Then I get back a week on Friday and have my telemed appt (still nothing in writing mind?!) on Tuesday 12th. I so hope it goes well - am quite excited about it in a weird sort of way. 7 months is a long time to wait and it will be interesting to find out how it works seeing my rheumy on a screen.

Must dash - look at the time and I've got to wash my hair yet?!

Wishing you all pain free days.

Tilda x

[Treesha]

Hi Tils good luck for your travels i'm sure it will be great. Let me know how you get on with your bloods. Especially your cholesterol, as you probably know i had a raised result last month and was horrified and couldnt understand why. I saw a consultant last wednesday ( still havnt seen my consulant since diagnosis in November) and he confirmed raised cholesterol was due to MTX. I was relieved to know it wasnt something i was doing but its still not good. Anyways he wasnt too bothered by it ,he said it was expected for some oneof my age (44 ) and on MTX. Hope yours is ok. I dont like the heat either makes my legs swell. I work in a windowless room in the middle of a 3 storey building with only a fan to help keep me cool and as usual employer not interested. I have to wear a winter uniform which is fully lined and extremely hot. But hes ok in his air conditioned room! Anyway happy travels to you see you soon xxxxx

[Sam59]

Hi Tilda

What a busy time for you. Have fun and enjoy your time away.

Samx

[sylvi]

Tilda, you go and enjoy yourself and we look forward to hearing about your travels when you get back. Have a great time.

sylvi.xxx

[Hidden]

hi Tilda

have a wonderful time away and take it easy. I love this weather too but like treesha i have found my ankles have swollen. looking forward to hearing about your telconsultant.

[Hidden]

Thanks Treesha, Sam and Sylvi. GP seemed really pleased at my progress and said not to worry about BP being a bit high - he will keep an eye on it from now onwards but he didn't think it was dangerously high at least and he doesn't want me taking pills for it yet. Will let you know results when I get them but he doesn't anticipate any problems - will phone me on my mobile with choresterol levels, ESR, liver etc if any worries.

Re your high chol levels Treesha - I didn't know MTX did this too. I read that it can cause hypertension though but my GP and rheumy will both play these down as they really want me to stay on the MTX. Did you mean you saw a cardio consultant re your cholesterol or did you mean the rheumy? Interesting that i'm not the only one who hasn't seen a consultant since diagnosis - but presumably you have a specialist nurse monitoring you for disease activity? It's still not good though and I dislike the way each specialist pedals only for his or her specialism and doesn't take stuff like the liver or cholesterol seriously enough - wish it was all much more holistic.

And that's dreadful about your winter uniform and being stuck in a 3rd floor with no proper air conditioning poor you.

Sylvi I hope you go from strength to strength with you knee - good luck. Will check in on my iphone when I can. TTx

[Treesha in reply to Hidden]

hi it was a rheumy consultant i saw, when i got to the hospital the nurse said threre were 2 consultants mine and another one. I assumed as " my consultant " was there i would automatically see him. He said the liver processess cholestorol and Mtx effects the liver. He said my good cholesterol was high and the bad was low so not to worry. He also said re my knees thats as good as it gets and the permanent numbness in my elbow was to be expected! Basically keep takiing the tabs and we'll see you in 4 months. Xxxx

[Hidden in reply to Treesha]

Yes I think that's what I'm expecting from my rheumy 2 weeks tomorrow when I see him by telemed - I think he'll say the same about ankle and numb elbows and fingers that won't completely clench ever (as GP found out when trying to take my blood today and couldn't find a vein easily!).

I don't think I've ever had my choresterol checked before.That's really interesting to know anyway thanks Treesha. My GP doesn't seem to think I need a print out of results or to see him beforehand but I might ask for one anyway for my own personal record.

4 months would be good wouldn't it?! For me it was meant to be in March (4 months after diagnosis) but I was passed over and have only got this telemed appt by making a fuss - if I hadn't it would have been end of July in person or if I'd been really bad they would have sent me to Aberdeen for the day - but getting this far took a formal letter of complaint. Really hoping that was enough to mean they stick to the correct 4 monthly intervals but seeing is believing! TTx

[Hidden]

Enjoy your time away Tilda. Glad to hear doctors not too concerned about the blood pressure.

Be good to hear of your exploits on your return.

Love

Carolyn x

[Hidden in reply to Hidden]

I think I will probably have a lot to tell Carolyn - hopefully none of it about the RA! TTx

[Hidden]

Another lovely photograph Tilda! I hope you have a lovely time on your travels and look forward to hearing all about it on your return.

Take Care

Paula x

[Hidden]

Thanks Paula - you take care too. I can read and post using my iPhone but it's harder in transit that's all! TTx

[Hidden]

Tilda, That is so great that you are going away again! I'm thinking you will be so caught up in all the activity, you will forget RA and all its nuisances! Just be sure to stick to your meds schedule, then forget RA and absorb all there is around you! Take more pictures!! Cheers, Loretxx

[Hidden]

Thanks Loret - I think you are right! I told my GP that I was really well and he looked delighted - not bad for his first apt of the morning eh?! I asked him if he had ever had a patient whose RA had gone away and he thought for a bit and said that he hadn't but he had some who had stabilized on the medicines for quite long periods before the next patches of disease activity had started and he thought that was the best thing to expect. He said I should ask the rheumy that question in two weeks time so I will if this stable patch continues. He did smile and say "that really is good news - great in fact!" and I agreed so it was nice being a patient this morning for once! Will come back in 12 days and do a blog about my travels and hopefully RA will hardly feature but don't worry my meds are all packed in my hand luggage - MTX night tomorrow! TTx