Rising to the top of the ocean - and staying afloat!

beanielou

Blimey rising you are really going through it at the moment.
It just all sounds dire to me.
When can you have more sick leave as it certainly sounds if you need some
No wonder you cant cope with the side effects as they sound totally dire
I take it that the breathlessness is a side effect too?
Positive positive vibes your way.
I so wish that there was something that I could do xxx

freebyfifty

^^^^^^^What Beanie said

You really are going through it at the moment.
I'm sending you a massive (((hug))) and I feel pretty useless as that's all I can offer you. I know its easier said than done but please take it easy and look after yourself. :A

wannabee_in_credit

((((((rising)))))) - sounds like hell at the moment. I hope that there's a better solution from your consultant.
x

RosaBernicia

Oh poor you Rising

Hope you feel better soon

Rosa xx

taxi73

What awful S/E...hope you can get some answers/solution soon as you can't go on like that

rising_from_the_ashes

Thanks all..... as ever, it's lovely to see supportive message when I can log on (can't believe another week's gone by without my managing to get online again:o).

So .... well .... don't really want to moan on again ..... BUT ..... - won't be offended if you don't read on!:o

So ... hosp appt on Thurs - unfortunately my consultant had been called to an emergency when my appt was so saw a Registrar (not one of the ones I know unfortunately) and we just didn't click at all - I listed all the S/E I was having and she just said I need to put up with them & keep having the infusions. I asked if I could go back on my old drug regime now things have settled as I'd been fine for over 5 years on them to be told "but then you had a flare" .... yup, but someone with Crohn's will have a flare at some point whatever you do! :mad:

Anyway..... she got a hard time from me - her answer to the joint pain is even stronger painkillers (how do they expect you to be able to function & go to work on these things?) All the other S/E she tried to suggest weren't that bad - and TBH if you had one of them you'd be OK.... but all of them together .... nope!

Weight gain is becoming a huge issue for me - now at 3 stone since I got out of hospital - S/E of the steroids (now finished) but also the infusion so it will continue. She seemed really unconcerned about it but, to me, it's pretty major. Neither foot / ankle are great - knackered left foot doesn't do well with extra weight to support (and initially refused steroids in hospital due to this) and knackered achillies in right ankle doesn't like it too much either!

Anyway, we reached stalemate & she said she'd chat to my consultant - and as I was waiting for my bloods to be done, he arrived so had a really brief chat with him. He wants me to stay on the infusions ..... but can get where I'm coming from (I told him I felt 100 x worse now than when I was admitted to hospital:().

I've been taken off the joint meds my GP gave me (painkillers mentioned above instead) - and have to phone him in 2 weeks to chat re the infusion (next one due 10 April).

However - having had a couple of days to think it over, I def don't want another one .... it's bl00dy toxic! I can't see the point in having it if a) it's making little difference to my tummy and b) it's making me feel bl00dy awful.....

Personally I'd rather risk a flare every 5 years or so, have some quality of life than feel like this!:(


Have been thinking about acupuncture to help with the joint pain & there's a lady in the village who does it which is handy ...... it's not cheap tho' - £48 for 1st appt & then £38 after:eek: so can't really afford it TBH.

Have an appt on 28th but think I may put it off for a month or so - or I'll not know if it's helping, or if it's the infusion drug getting out my system making the difference .....

*sigh* .... sorry guys .... I feel better getting that off my chest but so sorry for moaning yet again!

On the plus side ....... I've had a couple of long (for me - still way down on our usual length!:o) walks with Maisie this week!:D Managed our "circuit" walk from the woods - beach - woods which was lovely - need another 1/2 hour or so light to be able to do it every night! It'll do both of us good and should hopefully help to keep the weight in check!

On the money front .... spreadsheets are way out of date and really need to try to sit down and look at these tomorrow!:eek:

Anyone doing anything nice / exciting?

beanielou

I am sorry things are still not good for you.
REgistrar needs a reality check.
If I had gained three stone I would be very unhappy even without all the other very real and dire side effects.
So wish there was something I could do to help.
Keep plodding xxx

taxi73

Sorry to hear that you're having a miserable time with the drugs and can't blame you wanting to stop.It's hard to believe that they don't have something better than chemotherapy to tackle your illness.I'm with you on the weight front too.I really don't know what to suggest

freebyfifty

Morning Rising.

You sound as if you are having a really awful time of it at the moment so I'm sending you another massive (((hug))) :A

Sometimes I think that these professionals don't realise what it is like to live with all the things they are supposed to be experts on, and if they did they might have a more sympathetic ear.

We listen to them because they are more knowledgable than us and have a degree of superiority over us and we stand in awe and take everything they say as gospel because they are "experts" and have the title of "Doctor" or even higher up "Mister". And the Doctor or Mister expects us to listen to him and stumble along following his every word because that's just what we do.

However, I truly believe that our bodies will tell us what we need. Our heads will tell us what is best for us and only we know how much we can cope with or how we want to be treated. It has been proven so many times in the past that a person knows when something is not right and the Doctor has been wrong.

You know you. You know what your body needs/wants/can cope with. I am not saying don't listen to your health professionals but I am saying listen to what your body and your head are telling you.

You do what you want to do. Just because he's a "Mister" it doesn't make him God and doesn't make him right every time and it doesn't make him have to live with how you are feeling at the moment.

Goodness, what a ramble.

Much love Rising :A

rising_from_the_ashes

Awwwww thanks all ..... freeby you made me cry but in a nice way IYKWIM - thank you, I needed to hear that.

It's funny as one of my friends has cancer and has had an awful time with it (onto her 4th round of chemo ) and it's wreaked her kidneys and she's now had to have surgery on them ..... was speaking to her the day before I saw my consultant and she said to stick to my guns too ...... I'm going to phone him tomorrow & say I'm def not having another infusion.

Their answer (and this seems to apply to a lot of the Drs I see) is to take more & more and stronger & stronger painkillers ..... but that's not solving the problem is it?

I really want to go back to my old meds - they worked fine for 5+ years and the S/E were liveable with .....

Thank you all (((hugs))):A

Feeling a bit better today so hoping that's the joint meds coming out my system - feeling sick (and being so) all the time is horrible. Hate to say it but the strong painkillers are helping too - not a long term solution but if it helps until I'm sorted, I guess I'll stick with them for now.

Managed a lovely walk with Maisie on the beach - can you believe I've nearly had her a year :eek::eek: I was watching her careering around the sand / rock pools and playing in the water and thinking back to the terrified soul who arrived & wouldn't even walk on the sand!

Right - off to update the spending spreadsheets!:eek: