Could I really be this unlucky?

stickywicket

That certainly is some achievement, losing 3 stone while on 60 mgs pred. I think jillyb1 has a real rival for Champion Forum Slimmer

I do hope the rheumatology visit goes on Thursday and well done to your Dad for avoiding A&E

thistlegirl

second night and no A&E trips, thank god.

couldn't sleep last night, saw 4am before I dosed so taking a tablet tonight to recharge then a quiet day with the parents and poss sis and baby before heading home again.

I wrote out my list for thursday tonight which has hopefully emptied my head as I think that was the problem last night, my memory is so bad at the mo that I fret I will forget the important stuff when needed. Well 3 more days then I start to taper down the steroids, hopefully normal brain and sleep will return as the steroids leave but thinking that they hang around for 6 weeks just realised that may not be as quick as I was previously thinking. .....I just realised that, hmm, add that question to the list.

I was thinking about giving my consultant a copy of my questions and letting her get back to me on some points would be easier. she always has student doctors around, I thought it would be a good project for some of them to go throuh my notes and find what meds I have been on, when, what stage my JRA was at and what side effects I had, and why I was removed? it is over 30 years of notes but was talking to my parents tonight and we worked out roughly I was put on Naproxyn around age 8 and they think before that it was just asprin- high dose. I was also in remission between age 14 and 17, then I developed Iritis, then I think JRA came back within a year or so. I am so frustrated that I don't know for sure so I hope the doc/her students will help me.

ok switching off now to let the tablet do it's work, thanks as always for the support.

Jenny

stickywicket

Just popping in to wish you good luck for tomorrow, Jenny. I hope it goes well for you.

thistlegirl

I had a good chat with my Rheumy doc today.

Diet-
She was very happy with my weight loss and with the diet I have been following. She said if she had known what I had been eating sugar junk wise she would have been on at me before. She agreed with avoiding sugars and processed foods and that there are proven links to them making Arthur worse. She checked my bloods and I am getting everything I need nutrition wise.
Steroids-
She said they have been treating not just masking Arthur so I am happy about that. The cancer doc will check bone density if he thinks I need it if treatment needs to continue but at the moment I should be ok but will be watched.

Abatacept-She said she is now hesitating giving abatacept to anyone after my experience. She doesn't like the timing of 5 months after starting it the lumps appeared.

Treatment options for the future- I am now banned from Anti-TNFs for life due to now having a history of Cancer. I may be allowed Rituximab? But it would be off script, non standard and round the houses and all my consultants would need to agree.....

Drug history- She is going to copy me into my clinic letter that has a drug history at the bottom for negative reactions. Apparently my pediatric records have been destroyed

Drug holiday- I will not be allowed anything until I am cleared of Cancer anyway which is at least mid January but poss longer anyway. She agrees with the idea and I have the chance at the moment. So I am hoping to last until my next appointment with her in March on nothing but painkillers :shock: fingers crossed. When I asked her what would happen, and how quickly, if things went wrong and in her usual honest way she said I would probably end up hospitalised and we would go from there. She is going to check if I would be allowed joint injections when trying to clear my body of steroids for the PET scan, hopefully I won't need it! I told her I was aware it may not work but I want to see what is going on and hopefully detox my body to become more sensitive to the drugs and painkillers so when I do need to go back on them I can hopefully be on less painkillers and maybe go back to the drugs that I didn't react badly to but they didn't hit Arthur enough.

Bad Ankle- no injections til things settle but best treatment is the exercises the podiatrist gave me- which I have not been doing when other things have been going on for some reason. So I will try to find them again but I think I can remember them anyway.
We spent most of the time talking about diet and food, compared to my cancer doc it was night and day- he isn't interested. I also have a very long term relationship with my Rheumy doc so we know each other well.
I did handover 4 A4 pages of notes on what I wanted to tell her as I couldn't trust my brain to get all of my points across so she can look at them later as well. I think I covered everything almost :roll:

I came out feeling very good, I knew I would be in limbo until the Cancer has sorted itself anyway so I wasn't expecting any decisions on treatment. I am happy she has agreed to my drug experimenting- it keeps me occupied, it is going to be scary not knowing how things are going to go and also knowing where I could end up-bedridden in hospital but sometimes you have to take a risk.
I am obviously pleased with how much she agreed with me about my diet, both her and my GP have said now it makes sense cutting out the processed foods and eating less meat etc- it is nice to get it from the professionals. I love modern medicine and will use it whenever I need to but I will also make sure I am giving my body the best fuel I can to fight Arthur and cancer and avoiding the things that can make it worse-more research needed on these!

I gave her a thank you card as I was leaving as it was her that pushed for the biopsy so I do owe her, other docs were onto lets just leave them and see what happens..... :roll:

Had dinner round at my friends house tonight, good food (some treats!) and a good catch up. but it has been a long day.....
....just remembered the spanner in the works!!!!

So my dad stayed out of A&E when I was out with them the past few days, I came home last night and my mum calls me- She has been to the GP and she has SHINGLES- the one thing I was told to avoid and call doc immediately if I think I have been exposed when on my steroids was Chicken Pox and Shingles :roll: :roll: :roll: :roll: :roll:
So I am now on Anti-Viral tablets 5 times a day for a week just in case as I am immuno-suppressed :!: PARENTS :!:
Both her and my dad get shingles around once a year, I remember hearing something about a jag being developed??? Though my mum won't even get the flu jab yet- I will be nagging her though :roll:

Lazy day tomorrow

Thistle

thistlegirl

Side effect of the anti-virals-

May cause tiredness. YEP getting that today so sleep wont be an issue hopefully for the next week. :roll:

Jenny

Starburst

Oh Jenny, what a palaver with the shingles and on top of everything else you have to deal with! It sounds like your rheumy is fab and on board with you. I'm pleased that you felt it went well. I think you're an incredibly strong lady to face all that you are and keep going. Glad you had a good evening and enjoy your lazy day tomorrow. It is more than well deserved.

thistlegirl

Anti-virals- May cause tiredness!!!!!!!! Cheesy peeps, I can't keep my eyes open. I have to take 1 tablet, every 4 hours, 5 times a day. That is 8am, 12pm, 4pm, 8pm, midnight! I wasn't really awake long enough before taking these, now it is just getting silly.
I set my alarm for the morning drop the tablet into waiting glass of water to dissolve, down the hatch, start the timer for 4 hours, roll over, doze and repeat....for 7 days :roll:

I start my taper down of the steroids today down from 60 to 30mg. I was worried about mood changes during this but I don't think I am going to be awake enough to care really.

Getting scared thinking about how Arthur is going to behave when the steroids are gone but I can't do anything about it so just need to cross my fingers-while I can- and hope for the best :?

Time for another cat nap while watching Buffy the vampire slayer from the start on Syfy-dreams could be interesting

Jenny

purpleowl

Hi Jenny, so sorry you are having such an awful time! I am thinking about you and really hoping your health problems improve soon. I know nothing about the drugs you are on so can't even begin to empathise!!

Watching Buffy sounds like a good bet to me, I'm 61 but I love Buffy, or is it because I drool over Angel :oops:

Keep those feet up and those eyes open when Angel's around!! You don't want to get caught unaware by a Vampire, have Mr. Pointy at the ready!

Have you started watching the new Dracula yet? I'm not sure about it but another really gorgeous bloke playing the main part so well worth watching(I'm not man mad honest)!! I don't remember his name but he played Henry the Eighth in the mini series.

Take care,

Trish x

thistlegirl

And now the anti-virals are going for my stomach, just when it was settling too with the steroids.

Oh well 1 step forward-I am a bit more awake today, made it to my sisters to get fed and kiddy cuddles - by other sister taxi service.
The food was not following my diet but as my stomach was already complaining I figured it didn't matter and enjoyed mac and cheese and..........freshly made chocolate brownie and ice cream Very yummy!

Trish- yes Angel is yummy, especially at the beginning! I have recorded the Dracula eps so far, hope to be awake enough tomorrow to catch up with him- Jonathan Ryes Myers- Loved him in the Tudors too

I feel less in control of my body than ever at the moment, I finish the anti-virals on Friday and step down the steroids again on Thursday.....

Jenny

thistlegirl

I hate these Anti-viral tablets :x

2 more days of this, every 4 hours, just when my stomach starts to recover it is time for another tablet.

the rarer side effects included hallucinations why couldn't I get that?

Jenny

stickywicket

Keep going, Jenny. You're doing so well. Not long to go now.

kentishlady

Keep up the good work, Jenny. You are doing so well. Sending you a few (((()))) to help you along and am thinking about you. Beryl. xx

thistlegirl

Off for a CT scan tomorrow afternoon. I was expecting 2, head and chest but they are only doing the chest. I called the doc and left a message checking but they checked and he said just the one.
I am not a doc and my face is not exactly normal at the mo (caved on on one side where the lump was and steroid moon face on the other-thank god for loads of long curly hair!) I think there is still a lump there. Will be seeing him next week anyway but lets just say not out of the woods yet.....

5 more doses of evil anti-virals to go, this time tomorrow they will be done, and hopefully by the next day my poor wee tummy will have forgiven me-for now, I also step down on the steroids tomorrow to 15mg tomorrow also.

I hope I have time to get my stomach back to "normal" before they bring in anything else....if/when they need to it prob won't be til the new year.

Not in a great head space at the mo, as you can probably tell. Coming down off the steroids, acid stomach and cabin fever are knocking my usual attitude. Hope normal service resumes soon, as I said see cancer doc next Tuesday so I will check with him then but for once I am not able to say things are looking good....I don't know for sure either way but my usual approach ain't working at the mo.

Thistle

dibdab

Oh bless you thistle- you've coped with so much, no wonder you're feeling so down. I really hope that you'll have a positive appointment next week, and that the CT scan shows good news. Don't give up-you've already proved that you're made of strong stuff, and you have been an inspiration to so many of us.

Sending a whole bucket full of hugs to keep you going
((((((((((((((((((((((((((((((((((( )))))))))))))))))))))))))))))))))))))

Deb xx

purpleowl

Hi Jenny, not long now and you will be off those (flowery language!! ) anti virals and your stomach will be a much happier bunny!!

Hang on in there kid, thinking of you and sending you positive vibes,

Trish xxxx

dreamdaisy

Good Grief Penfold, I've read back to catch up and I am utterly humbled and staggered by what you are going through compared to my own little things. Honey, no wonder you can't keep up the brave face and positive attitude - because of the constant onslaught of troubles you are dealing with it is bound to slip from time to time so don't beat yourself up about it, OK? You have weathered some tough storms this year and I have no doubt you will get through this one. ((())) DD

stickywicket

I'm with Deb, Jenny. ((((((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))) Keep going. We're all with you.

petals

I have been following your story too Jenny, I hope you are ok.

Sending you lots of warm wishes and willing you to get better. Hang in there chick, we are all with you.

Love Petals xx

barbara12

Still thinking about you ...and so glad you are talking to us..((((())))xx

kentishlady

Just sending lots of (((()))) your way. Will be thinking of you on Tuesday and hoping all goes well for you, Jenny. Take care of yourself. Beryl. xx

destiny0321

hi sending lots of (((((((((((((((((((((((((hugs)))))))))))))))))))))) your way.
you have really had things bad but from now on lets hope things start to get better for you will be thinking of you. destiny

Toots

Hugs for you Thistle, you're not having a good time of it and I honestly thing a wobble now and then is only to be expected, you're not superhuman! Be kind to yourself, rest up and keep taking the meds. You're getting there x

Colin1

sometimes life's a bitch I would be having a very serious talk to my Rheumy about patient care and you rights. you should also let your rheumy know she is there for you not you for her. To wait that long and have that worry over you is terrible. You and I both know that early intervention is so important. You have had enough of people messing you about and keeping you waiting. I do hope all goes well for you ill be keeping my fingers crossed and if its ok for you ill say a little prayer that all goes well.
Colin

thistlegirl

Hi guys, thanks for the hugs, still here, improving slowly but not there yet.

Colin I think you misunderstand- I don' t have any problem with my Rhumy doc, she can't do anything until I am free of the medications and treatment I am on or could be on for Cancer. Also I don't want anything, I have been constantly medicated 80% of my life, I want a break to see what Arthur is doing behinds the drugs.

Ladies- Thanks, it is hard to be so out of control of things, ironic I know coming from someone how has shared their body with Arthur pretty much their whole life, but I don't like being outnumbered.

I made it out to a party today- a first birthday party, arrived late left early-got outlasted by the birthday girl :roll:

Roll on Tuesday,

Jenny

dibdab

Hope you got cake before you left !

Here are just a few more hugs -it's a big week but we're here with an enormous blanket of concern to wrap you up in.
((((((((((((((((((((((((((((((((((( )))))))))))))))))))))))))))))))

Deb x