Stormy weather...

[Azabat]

Makes me sure I really and honestly am sick. Weather has shifted to hot and muggy with occasional dribbles of rain. My hands, wrists, knees, ankles, and feet have all decided to remind me how much worse things can be! So my question is, how much of this pain is permanent? How will I know if a med is really working? What are the chances that nothing will work? I'm afraid today. I can only walk very slowly and with a limp. I can barely type let alone handle my white cane. Could the rheumy be wrong? I just feel monumentally useless today - quite a change from the kitchen-cleaning maniac from the beginning of the week. And above all, when is it time to call the rheumy? Sigh. My brain just runs these circles over and over so I thought I'd ask.

Bats

[Jora]

And how I wish I could answer. It definitely sounds as if your RA isn't under control yet, so your Rheumy team has some serious work to do. It would be easier if we were all the same, but we aren't. Not only is the disease onset and process different in everyone, the efficacy and tolerance of the treatment is different. That might sound like bad news, but it's not really. It just means that they haven't found the right combination of drugs for you yet.

But manically cleaning the house in my books is certainly over-doing it. I'm a fine one to talk, as pacing is an alien concept to me, but I am good at recognising the need for it in others!

Can someone make the end of your cane blobbier and more comfortable to hold? Or paint white a walking stick with a comfy arthritis-friendly handle . I know a cane and a stick are used in different ways; just a suggestion and probably a silly one.

Take care.

Good Moving (not THAT would be good, wouldn't it!) For those who don't know, Bats and I play with the time difference, so 'moving' would be a combination of Morning (in Canada) and Evening (here in the UK!)

xx

[Azabat in reply to Jora]

*wry grin* I, too, am highly skilled in recognizing the need for pacing...in anyone else. No, I don't feel like things are under control. I don't want to go back on the rotten pred, but I don't want to feel like this, either. I think I will see about some kind of foam grip for the cane. The problem is not only gripping it, but that the motion is controlled largely by the wrist and index finger, so every little jolt of information hurts right now. It's not a particularly silly suggestion, but feel free to make some of those, too. I will call the rheumy's office and at least let her know where things stand, and ask if she wants me back on the prednisone. Thanks Jo xxx

Good afternight, Bats

[angel-delight]

Goodafternoon Bats, I will be even more confused or suffer more brain fog as I will be over there next month to visit my family. I have had one Tocli infusion so far, I should have had my 2nd last Tuesday but that was cancelled, I have another appointment for next Wednesday. This means I will not be able to have the 3rd one before coming over there. I am concerned that the weather will effect how I feel whilst I am there.

My daughter-in-law said they need the airconditioning on, I'm not sure how I will deal with that as here in the UK most people don't use airconditioners. When I worked in an office which was a long time ago we did. I can remember when I lived in Canada we use to go from a air conditioned house to airconditioned car to air conditioned Mall, resteraunt etc because it was so hot and humid.

I didn't have RA when I lived in Canada, I think it is the damp weather here that has made a difference. As you know I am still thinking about coming back to live in Canada now that I am retired and miss my son and his family, badly. They are hoping I will decide to go back permanently but it does depend whether I can sort out the medical side of things. I have no complaints regarding the NHS in the UK. I have been well looked after, not just with RA.

I hope they can get your meds sorted and under control and hopefully the weather won't cause you so much pain.

Do you use a scooter at all to get about even if it is only for the bad days? I know you like to walk and we all need exercise when we can.

I wasn't sure if you can use one due to your restricted sight. My son always gets me to use one when we go to the large Malls or when we visit the zoo as I wouldn't be able to go and my 9 year old twin grand-daughters love me to go shopping with them and the zoo is so massive no way could I walk around there.

Anyway, it is getting really late here, 9-10pm over there so I will say goodnight, take care of yourself Bats, hope you are feeling a lot better very soon. XXXXXX Sue

[Azabat in reply to angel-delight]

Hi angel, It really depends where you're going here, too. Western Canada has been ridiculously hot, but the east has had lower than usual temperatures, and higher than usual rain. Right now there's also a lot of forest-fire smoke, and even Alberta is having problems. Parts of Jasper National Park have been evacuated. I haven't used the scooters, mostly because of the vision problem, but I get the occasional urge to go on a rampage in the mall *evil grin* Air conditioners tend to make the air drier, which isn't necessarily a bad thing, but I do sometimes think people over-compensate. I try to acclimatize to the real world so I can depend less upon artificial cold, but it's harder with the RD.

I'd make sure you have travel health insurance while you're here - you might be able to get your infusion here if you need it. I am so scattered this morning! But thanks for your note, and if you'll be in Kelowna let me know.

xxx

Bats

[angel-delight in reply to Azabat]

Hi Bats, My son lives in the suburbs of Toronto, about 5/10 Minutes from lake Ontario.

They do get a cool breeze at times. I use to hate the airconditioning when I worked in an office as it was colder than in the winter. I could never understand that.

I have seen fires on the side of the motorways in Toronto but also over here too.

I do have travel insurance, I wouldn't travel without it with having several health issues.

I have used a scooter as I've said and I like your response *evil grin*

my son said I need to have an "L" plate on my back. I took a photo of my son when he was taking it back to the holding bay at the zoo. I just wish I could have found something to write a big red L on to stick on his back... You just have to have a laugh as they say laughter is the best medicine. I had to have an INR blood test last year whilst over there, that cost me over a $100 CDN I wouldn't like to think what an infusion would cost me. When I called my insurance on my return I was told I would only get £8 back, I told them not to bother as it wasn't worth the paper it was written on.

I hope you are starting to feel better Bats after your rest.

Take care, keep in touch and let me know how you get on.

Sue XXX

[Smiler53]

Hope you feel better when you wake up. xxxx

[Patsy-57]

On a hot day when every joint in your body hurts and is swollen you always get some well meaning person who says 'you must feel so much better when the weather is warmer'. I wish I had a pound for everyone who said it.

Patsy

[Azabat in reply to Patsy-57]

I expected to feel better in the heat myself! Not so much, really

[nomoreheels]

Hiya Bats. I know how it feels, my joints hurt when it's humid, similarly when it's damp so maybe it's a transitional thing like I have & when the air is dry again your joints won't be screaming quite so much. That said it does sound as though you're not well enough controlled just yet so maybe it's to be expected? Not that it makes it any easier to bear but if your pain relief or anti inflammatory meds aren't quite doing it for you ask your GP if there are any others you can take alongside your other meds. I've had to increase my etoricoxib to every evening from this week as my ESR & CRP have gone daft & until I hear from the stand-in Rheumy whether I've to increase my MTX, but my LFT's have risen from my norm as well so I fear I'm a bit up the creek!

Do remember we have good weeks & bad weeks when trying to get our meds just right so don't be too downheartened. It may be that your current lot just aren't doing it all the time, it happens I'm afraid, nobody's disease reacts the same to the meds as anothers' so I would hazzard a guess the majority of us here have felt like you. It's a you-know-what so don't be too hard on yourself. I did a bit of potting up this morning & now relaxing in the recliner feet horribly swollen & feeling rough, you're not alone m'dear, try not to dwell too much on it. I know it's difficult but it will get better, goodness knows you've enough to contend with. Hopefully you'll get there sooner rather than later, just keep on to your Rheumy & report back how things have been, maybe doing a daily diary will help get it out there & looking back at it you may recognise a pattern. Thinking of you. xxx

[Azabat in reply to nomoreheels]

Thanks nmh. I'm doing my best to stay positive, but today is the day after mtx, and I kind of feel like crap on a stick, maybe without the stick When the air is dry it definitely feels better; still sore but less swollen and not AS sore. I'm just taking it easy and using my medical cannabis. I don't much care to be zoned out, but honestly I react the same way to opioids, so I might as well use what has less unpleasant side-effects for me. I'm trying to keep having my life, it just frustrates me. I'm still wanting to be in control, and when I'm not I'd prefer to think I'm doing something wrong than that I'm *gasp* not in control. xxx

-Bats

[nomoreheels in reply to Azabat]

I sort of know, my h is similar, needs to be in control & as he's had his fare share of ill health this year with another op imminently it's difficult keeping him buoyant. I've no more suggestions, believe me I've tried them all!

I know how it is the day after MTX, I feel yuck to compared to the rest of the week normally though not too good just now. Anyways, I'm mentally resistant to cannabis, though when we were in Spain my h did try by melting down my favourite chocolate & adding some dried, I don't know if it wasn't enough but it did nothing for me. Personal use is legal over there & we had a few plants, again legal though they're damned hard to keep once the winter arrives! The bio-pharmaceutical Company over here has seen it's stock increase of late so it sounds as they're getting closer to getting the spray they've been trialling to market. I believe they've got a "notice of allowance" for one of their cannabis based compounds so maybe, just maybe they're getting that bit nearer which will be wonderful for those who would really benefit from it. x

[Azabat in reply to nomoreheels]

cannabis is tricky stuff to cook with, so I'm not surprised that melting it into the chocolate didn't do much for you. I mix the oil with honey (tastes like ech) and that usually lasts me for nearly 8 hours. I don't take enough to make the pain entirely go away, because then I do stupid things and pretend I don't still have a sore body. I think it has a lot of possibilities, and I'm very glad I got my license. x

[nomoreheels in reply to Azabat]

I don't think it did but thanks for the reassurance! Sounds l Iike you've got it sorted, I'm sure it has plenty of possibilities. It makes me smile that the one country which is so against legalising personal use is allowing a Company to grow it (albeit with high security) & is pumping lots of pennies into producing it for medical use! x