I read how the onset of Ra and Oa has afected peoples lives , and it saddens me that some of the really young ones are striken by this disease .The really active ones who could run jump and dance till dawn who may never be able to do it again. And I then wonder where do I fit in this , Back pain and probleems since 11. and one thing after another since , I used to dance for hours and then paid for it for hours or days, walked for miles and sometimes it eased the pain, but last few years all going wrong , Will not go into it again. but I miss my odd dance and my walks I even miss doing housework and the sence of acheievment seeing it all clean . The sewing and knitting I usedto do while resting can no longer do reading ,books too heavy . am getting a kindle .
I do hope people can manage their pain and thier problems at least part of the time .
I am sitting here with hands like balloons ,leg swollen ,neck and shoulders hurting and knees on fire lower back theobbing , But I am still better than some. though I am saying this two days befor i go to the hospital in Brighton to see if my cancer has come back, appointment one week later than the "two week rule" I am not going to worry as I think have convinced myself it just an infection. and hope that it is one of the few that have similar symtoms to cancer . We will see . take it in my stride , err, stumble as before . To be honest I dread the drive to Brighton more than seeing the surgeon lol .and if it ok, two hours there 10 mins with doc and then 2 hours home , not bad as only live 10 miles away , just the build up of traffic a nightmare . but hope that how it works out on monday . winge over lol have brill weekend all.
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so has the infusion not helped at all? I think you were on Rituximab about the same time as me or a little after? All my best wishes with your hospital appointment. I had cancer too and my appointment is on 24th! It's really hard not to worry that its returned isn't it, especially when you are getting all the pain and probs from the ra too. I am never sure whats causing what at times! I would guess you are the same? Anyway I shall send all my good vibes for Monday-Tuesday. Go safely with all that traffic too. Best wishes.
Charlie x
Oh my Lord, bless you. Sometimes I think that much is too much for one person! But, like is said, what doesn't kill us makes us stronger. Seems like there should be an army of Super Women and Supermen to battle all the world's ils!!
I am so relating to you. I used to be a superwoman, raising 4 boys, all in high school at same time, while working full time out of towm so away from home 10 hours a day, and cooked meals every day for the 6 of us. My household help was the boys, thank heavens.
I can't read books either, can't hold one, or turn pages without fumbling and then dropping it, but I have had an addiction to the feel of the printed word, in a fresh new, hard bound book! However, my dear family bought me a Kindle for Christmas and I love it, it has access to thousands of books for free, and I can download new releases from the public library. Haven't done that yet, have been reading some classics, like "Dracula" and "Little Women"
But I do so miss the chance to dance! Or play Badminton! I do gardening, on a smaller scale than used to be. And I revel in my grandchildrens accomplishments, now that my sons are grown and married, and they have had their own accomplishments.
I sure do wish you all the best on your upcoming checkup Monday. That does sound like an awful tangle of traffic!
Something to look forward to: I do do my own housework. Unfortunatly
I hope you don't mind me asking this selfish question pam and charlie but is RA linked to getting cancer. I have noticed quite a few people on here talking about their cancer and it has left me selfishly wondering if I have an increased chance having RA?
I don't wish to pry but if there is a link I would rather know , as that's in my nature.Hope all your appointments and treatments go well.
I wondered this myself a while back, and did a bit of reading. I think the thing to remember is that all the stuff written about cancers are just probabilities. If the average is that 33 in 1,000 people get cancer X, you could be person 33 - or person 34. So it doesn't really help much. And yes there are some cancers that statistics say do affect slightly more people with RA than others, and some where it's the opposite. But overall there's not a huge difference. But what make more sense to me in the reading I did is that the biggest control we have is to look after ourselves. There's nothing we can do now about RA, but we can try to maintain an average weight, not smoke, eat a good balanced diet, and take some exercise if we can. And try not to worry! That doesn't help either. Px
Tank you so much for that information I was starting to think there must be a link statistically. I was feeling anxious about getting cancer as I don't think personally I could cope with this and RA like the amazing people on the site with both problems. Diet starts tomorrow, I have the food from the real age site so will have a go, I have the willpower of a slug though, always been my problem. Thanks again
Snap, having had problems all my life (now 53) I sometimes feel so sad when thinking about the life I've lost. These days even an evening out with friends is really difficult and leaves me useless for days after.
But hey ho such is life.
Good luck at the hospital hope all goes well and it's good news.
Beth xx
Im thinking of you and hoping that your cancer hasnt come back x
I've been thinking about your blog since yesterday, and particularly the phrase 'where do I fit in'. So (& sorry if this is a bit of a ramble) although we have the same general diagnosis, the way RA affects us is so variable that often we seem each to end up trying to work that out for ourselves. And certainly for me sometimes it helps but most times it doesn't. Too often in life we fall into putting people in categories (rich/poor, fat/thin etc) and I'm finding that this disease is too complicated for that sort of approach.
I think I'm trying to make myself realise that RA isn't like entering a competition that you win or lose, and wherever we are on the spectrum we'll be better than some and not as bad as others. Wherever we are with our RA, among the things that we share is that we will each have lost things against our will, we each have an understanding of pain, and we all have had to come to terms with a unwanted dependance on the medical world.
But there are also some more comforting aspects that we share, such as a real sympathy that comes from experience of having RA. I'm amazed that despite all the problems you've got, you have made time and space to think about how it must be for others who are tackling it as young people. That shows such a generous spirit. So I really hope that you get good news tomorrow, and that the bad weather doesn't make the journey worse. Polly
Wow, Excellent Philosophy, Polly! So very true. I look and read all the blogs and the one common denominator I notice is that each has a profound ability to be sympathetic and encouraging to others, no matter what I have just read of their own difficulties.
I often add, my understanding does come from" having been there, done that," and though I still have issues, I have gotten through all those bad times and come out the other side. Older and wiser I suppose. Thanks Polly, that was timely and well -written. Have a good evening all. L.xx
Thanks for this blog it has brought up so many issues that had me worrying and with all the advice from you all and Polly and LLoret, charlie and summer I always end up feeling positive even in the hard times.
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Some Good News
Humira, Enbrel or Rituximab? I wonder if anyone else was given a choice, and if so, how they reached a decision
Lactose free meds?
Update on appointment with rheumy on Tuesday this week
