RA and a bit of a vent out!

* Santa delivered RA... I never did rate that man.

* I am considering giving up my house and renting a room at the hospital. I spend more time there than my consultant.

* After numerous XRays, I am wondering if I glow in the dark?

I have been told the following:

1. I MUST NOT get pregnant - (this is highly unlikely unless I turn up at the sperm bank or am visited by GOD.)

2. I MUST NOT drink more than one thimble full of wine per week...ARGGHH!!!

3. I MUST QUIT SMOKING - I am on day 5 of no fags and am seriously considering setting light to my tampons or mugging someone in the street for a puff.

4. I MUST attend my appointments so they can monitor any impending death or otherwise.

5. I MUST phone the hospital if I can't breath or go yellow...mmm

6. I MUST watch my weight as blubber puts added pressure on my joints...Oh Lord, do I need CHOCOLATE!!!!

As well as contending with the delights of RA, I have no vices left (Shriek!!)

Can anyone tell me what vices I can have with this disease? Have thought about a bit of furtive shop lifting but even this is difficult as I no longer have a turn of speed.

Samcat :0

41 Replies

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  • Having dirty or romantic daydreams - or both combined - and then looking to turn them into some kind of reality (with plenty contraception thrown in to avoid no.1)? TTx

  • I've given up on men - too much trouble clearing up after them especially now! HA!

    Samcat :)

  • ooooooh bit kinky Tilda!!!!lol

  • Hi samcat,

    I know how you feel, I have quit smoking 4months now and doing ok, though my family hate me, haha..

    It is rotten not being able to drink, but you can still risk the odd tipple as long as your liver function is being tested regularly, I mean a glass of wine a week!

    Quitting smoking is really hard, but as I was having an operation that fused some ankle bones, smoking would give me a bigger chance of it failing ( who knew)? I use nicotine q c mini tabs, patch didn't do it fr me this time, I'm now addicted to tabs, there is no way I could do cold turkey, I seriously might hav killed someone .

    It is one big rigmarole of doc visits and tests but hopefully that will settle and you'll get back to life, bit different but good nonetheless.

    As for getting pregnant, as the mother of three 20 somethings, motherhood is over rated, endless and thankless, yes I've said it. Come kill me...

    I told my youngest this eve (20 either she goes or I do!!! only kidding or am I!

    Take it easy, Gina.

  • aah someone's been to the hospital today!!!! Keep this sense of humour, it will surely help lol. I could do with a dose of it myself tonite. Why dont you watch some comic films with your thimble of wine and your apple. Lots of love thinking of you !!Axx

  • I'm trying very hard with the SOH though it's rapidly on the decline watching Eastenders! The lack of fags and booze is making me desperate!!

    Samcat :0

  • I can't get pregnant don't have an oven,don't drink,got a hiatus hernia,

    Don't smoke have asthma.

    What you can do, spend money on nails and clothes,shoes, handbAGS.

  • Love it Sylvia!!

  • Can't do much lorreta,can i.i have to sit here and get my strengh back, god knows how long that will take. xxxx

  • Need i say more,

    Sylvi.xx

  • Hello Sam its a friday night and i've just had a cup of herbal tea and two cocodamol. The highlight of my night is deciding whether to go for tramadol or co-codamol. Its night like these that i would love a glass of red wine or three. I would love to take up smoking again and I would love to be able to get back into my size 10 jeans. On the other hand i have to say you do grow to get used to it, but i too want a vice back in my life again.

  • Oh size 10 jeans..... struggling with 14s after Xmas, have a pair of 12 skinnys that mince my thighs, but I still try.

    xx G

  • Those jeans hang in my wardrobe sneering at me, taunting me with their skinny legs and if i so much brush against them, i feel the full force of their contempt and quickly close the door.

    i couldn't get a foot into them now infact i don't wear jeans any more - i haven't quite got to the elasticated waists but i am close enough to it.

    But things are on the up - after the steroid Christmas gluttony, i have now lost my appetite - i forgot to eat lunch today, imagine.

    I envy you the 14

  • I was a bloated giant on steroids, a big ft face, no neck, body builders arms, I lost the weight when I came off them. It was frightening the weight gain, oh when I see the photos of my neckless self. Having said that, the clothes I wore are in a suitcase labeled steroid clothes, as I am not sure that I won't need them again, my maternity range, without bonus of a pink bundle for my trouble. :)

  • HI Gina - love your description but you look so good now - i unfortunately can't fit into a photo thus no picture of me.

    Just before i got diagnosed i had a massive weight gain in about 6 months - that was awful i thought it was something to do with thyroid then i was put on steroids which added more, i can get down about half a stone following the steroid but before i can seriously focus on weight loss i am back on the steroids again. Good start today though - i am up 2 hours and my appetite is still sleeping, i only want my drugs.

  • Ha,ha, You guys are cracking me up this morning! Well I see we are all pretty much the same size. I vacilate between size 12 and 14, though I must say the 14's are looking baggy now, and the 12's are jeans with elastic waist. The legs fit better than the 14's However, like Mads, I have haunting, taunting jeans and slacks, size 10, in the far end of the closet, no wait, I just moved them to the center yesterday, to remind me I want to wear them come summer.

    I cannot take steroids, since I already developed Osteoporosis from previous steroids, and being diabetic, it's not a good idea, So, I try to stay around 800-900 calories a day, and 80 grams of carbs, so it's mostly chicken and turkey and fish and lots of veggies and occ fruit every day. You'd think I would be like Christine :Tinwoman" at 100lbs. Ha. I weighed that much when I was born!

  • 800-900 calories a day! That's not enough to support a mouse. Or is there some secret American system that is half the UK one? If I can keep to 2000 calories I think I've had a good day, and 1500 has me gnawing the table leg..... P

  • Lol, no secret anything.. it really is restrictive, and when I get that low I can do it for 3-4 days, then I must have a couple cookies and a glass of milk, or cup of coffee, loaded. BUT, I gain weight over 1200, just being inactive, low metabolism, diabetic, whatever. I get into starvation mode and I won't loose a thing, not an ounce, for days. I do get to feeling out of strength and energy!

    Vegetarians do have to be sure they get adequate protein, so atleast I can have most meats, except I don't buy beef for just me.

  • Not surprised you can feel out of energy! The next time I eat a chocolate I will think of you. P

  • Wow, that's not much calories. I eat more than that at one meal.

  • OMG! You are a prime example of how there is no justice in the world! :)

  • like they say in the advert "This is me", how did you get the weight off? Axx

  • Lots of cultures think that sloth, wrath and worldliness are vices....so hang around in bed 'till late, shout at the powers that be for giving you this £$%^ disease, and then go off and shop for something you've always wanted.

    Alternately after a while you'll find that it only takes a thimble full of wine to get you smashed....and you'll have plenty of drugs whether you want them or not (but do get a prepaid prescription card first).

    And I've finally got to the point where I don't even think about smoking any more, so it does get better.

  • At least we can all laugh! Its true, what can we do? In the early days of bad pain, my son got me some 'waccy baccy' I have to say did'nt help at all, maybe you need to be on it daily.

    My son vegitarian and I never thought he smoked, so when he produced this cure, I was a bit shocked, although in my youth, I had had 'weed' before ( never inhaled though haha!) God, was'nt everything fun when you were young, you were invincible? I loved carnivals and scary rides at the fair, drank, smoke, debauched (a bit). Then I had children, and became aware of my own mortality & feared.

    Maybe, we should get together and have a big party, lots of wine, smokes, drugs and rock n roll???

    My OH showed me an ad for a comedian we both like and asked if Id like to go , its on at small venue, and what did I say, 'oh I don't think so, that'd be very crowded'!! good lord what have I become.....

    xxx Gina.

  • Gina! Go to the show! Get there early enough to beat the crowd and stay until most of them have gone. It's the only way to try to do normal things!

  • Samcat - your post did make me laugh! But I don't think it's all doom and gloom (that said I have a party to go to tomorrow night and would love to just go and let my hair down, but on the other hand look forward to no suffering on Sunday morning, except maybe from too much dancing!)....and on a positive note I have somehow managed to lose weight while having RA, even after 3 months on steroids, and am the thinnest I've even been in my adult life (size 8-10, after always being at least a 12)!!

    So there can be some good to come out of it!!

  • some ones lucky,i wish i could lose weight. xxx

  • i know - don;'t know how it happened and don't want to sound like I'm bragging, but I've never been skinny in my life, so proud of myself! only good thing to come out of this!!

  • When my RA flares I lose loads of weight, my rheumy nurse says it's very common. Pre RA I was about 9st, after my first bad flare I was 7.5st, I stuggled to get back above 8st and with this flare and the oral steroids making me so ill, I daren't even get on the scales!

  • Me too! after 20+ years of always been on a diet (size 14-16) it started dropping off me effortlessly when I reached 40, and stayed off despite me eating whatever I liked. I just thought I was really lucky, despite not feeling that well over the last 13 years, but when I was diagnosed with RA last year, it transpires I'd had it for that length of time, because of the damage to my joints! Now size 10-12 but I'd rather be bigger and not have RA.

    x

  • get yourself a prepaid certificate for your prescriptions it will save you a heap of money so you can spend loads on handbags......... you will find the info on

    nhsbsa.nhs.uk/healthcosts

    good luck

    Maggie xx

  • I went to a party last night with your blog still in my head and causing me to smile a lot so consequently had a good night - thanks! It's weird watching all around you transform into alcohol fueled nutters - and when a very loud woman drunkenly lit up I begged one off her just to feel a rebel again. But having not smoked for a few years now I got so light-headed I nearly fell over on the flags outside the house and teetered around for about 30 mins feeling like I had consumed both whacky backy and booze - so as Polly says it takes very little money or effort for us to get trolleyed these days and with no alcohol to over stimulate my small brain I then slept like a log!

  • I love your senses of humour, but I have to admit that even though I gave up smoking in 2005 ( after watching my nephew (27) die of lung cancer) I refuse to give up my tipple... even though I am on methotrexate, I used to love a few pints of lager but suddenly couldn't tolerate it, went on to cider but when I was put on steroids the weight went on, I am now a proud vegetarian ( as apparently being a veggie gives you an extra 10 to 15 years of life, not to mention saving loads of animals lives) My specialist told me that RA takes about 7 to 10 years off our lives so I think I have rebalanced things :) but I now enjoy a glass (or 4) of red wine a night, I feel great and my weight is now stable... I know I will lose another half a stone when I go back to Spain in a couple of weeks as I like to live off the land when Im there, loads of fruit and veg,,, I make a mean soup ha ha...

  • A big thank you to all for your fab comments! I'm a recent newbie and already I'm addicted! That's it... NRAS is my new vice ...YIPEE!!!

    You all make me smile and it's so lovely to know you're not alone.

    So THANK YOU and BIG HUGS XXX

    Samcat

  • Late to this - but another one who's become a very cheap date!

    I have developed an internet shopping 'habit' though - often to be found searching Ebay for bargains:-)

    My steroid 'fat face' clothes are all courtesy of Ebay and like Gina I have a bag in the loft labelled 14/16 steroid clothes. My stomach really bloats out on steroids so adjustable waists and elastication feature here! My wardrobe looks like it belongs to a yo-yo dieter as I have 1O's and 12's [my normal size] 14's [on the way up and down] and 16's [steroid bloat]. After the first time when I recycled the 'bi' clothes [optimism] I now realise that I am going to be on and off steroids for the rest of my life but will do anything to avoid a repeat of the 8Omg episode as I felt really awful on such a high dose.

    Having a sense of humour and a sense of the ridiculous is what keeps us going:-) Where I once struggled to get out of button-up 'bodies' [in the 8O's] to pee in the Ladies in nightclubs - I now struggle with getting leggings up and the loo door open!

    Keep on blogging samcat:-}

    Cece x

  • That should have said 'big' clothes!

    C x

  • Last time I wore leggings was my son's wedding in Oct. I know of what you speak!!! So decided to drink shots of Bailey's Irish creme rather than beer or wine..must less volume to get rid of!! Yes it was alcolholic and it hasn't killed me. I also did not take any pain meds after 4pm that day, was still up to dancing at 10pm. Well, sort of..while holding on to one handle of my wheelie walker :)

  • That's a bundle of really lovely humour in our shared pain! Thankyou everyone. I'm struggling with various prohibitions (legalise cannabis!!) but noticed that the days are getting longer and some bulbs are coming up in the gardens. Crocuses are starting to come through on the meadows here in Edinburgh although its much colder today.

    Off to cook jerk pork rice and peas in an attempt to build up a Caribbean feel tonight. XX

  • What a great blog and some great comments xx

  • ditto! loved the blog and comments :) xx

  • Ha ha ha, just read this blog!!! Every thing in it is me!!!!!Struggling with drink, weight, and can I come to the party too pleeze lol

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