Could I really be this unlucky?

thistlegirl

Thanks sticky, yes it was alwayswe are going to try you on this tablet for your arthritis and take this tablet for you stomach......
I think that is why I have been on so many of the infusions as they bypass the stomach.
well yesterday was pretty much the same and last night I remembered I had previously taken the esomeprazol 40, mornig and night so I took another tablet and it helped some but I am going to talk to my gp tomorrow and see what she wants to do. next week was a week of no doctors or hospitals for me, was really looking forward to it....

guess I should eat something today so I am going to try so porridige and see what my stomach thinks of it. pj's and couch are the order of the day and maybe BBC pride and prejudice series.

Jenny

dibdab

Hi Jenny,

Just dropping by to send some positive thoughts. You are doing so well, and you're being so positive, I know that like me others on here are finding your courage and determination an inspiration.

Hope the GP can find something more effective for you tummy. Enjoy your duvet day.

Deb x

dreamdaisy

Oh lordy lordy, you are going through the mill, aren't you? I have no suggestions because you are a wise one who knows what to do. Take things as easy as possible, avoid any potential stress, I turn to plain cream crackers when my stomach is playing up, or a bowl of milk-less Rice Krispies. DD

purpleowl

Hi Jenny,

sending you some positive thoughts.

Thinking of you,

Trish xx

thistlegirl

Different GP today but they are all good in my surgery.
The first thing she said was "Well I was wondering when your stomach would start to complain!" So I am on 40mg morning and night with Peptac liquid after meals and before bed.
She also gave me more sleeping tablets- I haven't slept for more than 2 hours a night since Friday and lets just say I was fried. She said take a tablet for the next 2 days and recharge.

On reflection I probably shouldn't have driven to the docs but I got there and back in one piece and didn't go and shout at the idiot driver for speeding past me as i walked down the lane to the doctors as of course all the proper spaces were taken. :x
Decided it is best for me to be away from others til I recharge so I won't be leaving the house for a couple of days.

Trying to make it to at least 9pm to try and keep to a normal schedule then GOODNIGHT!!!...I hope.

Jenny

kentishlady

Am so sorry you are getting some extra problems to deal with, but i suppose it's hardly surprising that your stomach is protesting. You really are doing so well to cope with everything that had been thrown at you recently. Trying to cope when you aremnot sleeping is even harder and I do hope the sleeping tablets help you.

Rest as much as you can. Am thinking about you and sending some ((((())))) to try and help you along.

Beryl. xx

stickywicket

I hope you managed some quality sleep, Jenny, and that today's a bit easier.

dibdab

Hope you got some sleep, and the tummy meds do their stuff really quickly. (((((((((((((((((( )))))))))))))))))))))))

Deb xx

purpleowl

Hi Jenny,

hope you managed to get some sleep last night,

sending you good vibes,

Trish xx

thistlegirl

12 hours sleep before I was woken by the phone

building up to moving from bed to couch, grabbing some food on the way, then time to see what I have recorded on my digibox.

feeling rested but foggy from the tablet and my stomach does not like being empty apparently so off to sort food pronto now.

(((((((thanks))))))

Jenny

kentishlady

Glad you have managed to get some sleep, Jenny. It does help, doesn't it? Hope you manage to eat something without getting too many complaints from your stomach. Take care of yourself. Beryl. (((())))

stickywicket

It sounded like a good, post-sleep plan. I hope it worked.

thistlegirl

Well I have done 2 nights in a row on sleeping tablets for the first time since I started them and I feel rested but very foggy. I don't like loosing days and I feel like I have pretty much lost this whole past 6 days

My stomach is still not great but the tablets and liquid seem to be fighting back when needed but I would love to eat some food and enjoy it's tasted before downing peppermint flavoured goop.

No tablet tonight and then heading out tomorrow to "help" my sister with her kids while she and my mum make curtains for her house. This is where it started to go wrong last week but if I don't get out the house I will go crazy!!! I have been honest with them about how rubbish I have been feeling this past week so hopefully they won't expect too much from me-I will go on strike again if I need it but hopefully I am rested and ready to go......or rested and ready to watch cartoons (anything but Cars 2 PLEASE!!! now word perfect :roll: )

Time for bed but worked up by the forum actions, need to sign off and not think about it til the morning- that will sure help me get to sleep....

Jenny

purpleowl

Hi Jenny,

so pleased you have managed to have a couple of nights sleep, long may it continue but pill free. Hopefully you slept last night too.

When you can't go out because of 'mind fog' you feel like you are going stir crazy!! I hope you manage to see and enjoy your family today!

A good dose of 'Roadrunner' or'Foghorn Leghorn' (that's showing my age) is the order of the day. Hope the children aren't too boisterous for you! What cartoons do they watch these days, I have no grandchildren yet so have no idea?

Take care of yourself, Jenny

Trish xx

thistlegirl

Better day today, less foggy as no tablet last night, def not doing two nights in a row again, I never felt that I fully woke up between the two.

So after a slow start I made it over to my sisters and I had a good day but I must say my 3 1/2 year old nephew was on form.

A bit of info - we have recently introduced the idea of good and bad robots inside him. Good robots like veggies etc and give you energy for running and fix you if you feel sick and bad robots like cakes and sweeties and make your nose runny etc. This helped explain his tummy bug a while ago and has got him to eat some veggies!
My mum used soldier to explain Arthur to me, my soldier were busy fighting german measles when Arthur slipped in and he makes them confused sometimes so they fight each other.

He knows about my sore bits and how they stop me playing with him on the floor etc... so today he looks at me, then walks across to me with his legs straight, not bending at the knees and asks "Why do you walk like this?" ......I would like to point out that I was walking better at the moment!
Anyway after taking a moments I think about how to explain this.
So I explained that my bad robots were making my knees sore when I bent them so it was easier if I kept them straight and that is also why I am eating and drinking lots of fruits and veggies for my good robots- he obviously does not know about my cancer.

Anyway it made me laugh so I thought I would share!

Pupleowl - oh how to explain the cartoons now. He is young enough that we can restrict them so they are all educational- alphablocks-to learn his letters, Team Umizoomi- to count, learn shapes and patterns and many more. He doesn't get too much TV but I do admit to using it for times when i need to recharge if there is no one else around to help.

I look a my nephew I think I could never raise him myself but I would like to think if I ever did have a child I would have them "trained" to work with my disabilities. There are things that my sister has done that works for her but does not make my life easier!
At this point I don't think I will be having my own children- need to find a man first

A bit random today but more awake and tummy feeling better. One day at a time for me for a while.

Jenny

dibdab

Glad that today was an okay one for you .
I remember being word perfect with the original Cars movie when my nephew was small- but somehow it was better than the xbox games he likes now .Family time has a way of "grounding" us somehow in the midst of the medical madness doesn't it?
Hope that you get some sleep tonight.

Take care

Deb xx

Toots

Love the robot and soldier analogy! Little kids to brighten the day Hope you're having a good one xxx

barbara12

Hi Jenny the robot and solders is a brilliant idea...I am glad to see you have had a couple of nights sleep re the pills...and you mange to get to your sisters..the groggy feeling does wear off when your body gets used to them
Hope today is a good one..x

thistlegirl

We now talk about the robots at every meal. He asks what will the robots day about the broccolli -we say "yummy broccolli send it down we need more energy!" and in goes the broc. when it comes to puddings we say the bad robots are enjoying it but the good robots are ready as the are full of the good food so it is ok. It is not a don't eat bad things, it is everything in balance. He has also asked about what the good robots use the foods for so we have them taking the milk and growing his bones etc - he is only 3 1/2 but there is nothing wrong with his brain that's for sure, so many questions!

2 points today:

Is it just me or is the clock wrong on the forum, it hasn't been put back???
I put a request in the technical questions part of the board index yesterday but nothing yet- it does not help with the foggy head :roll: :x :roll: :?

Random thought late last night: Been doing a lot of waiting over the past few months but have kept sane(ish) I think it is because of this diet I have been doing. I have very little control over things in my life recently but I have been able to control what I put into my body and let each decision be a good one- Looking after my Good Robots, they need to be super charged!!!
It has been great that I have seen such good results from just eating so many veggies and cutting out the processed stuff. It has been so easy to do since I haven't been able to work, I doubt I would ever of had the energy etc to do it properly while working full-time. The more research I do the more I am interested in helping my body the natural way along with the chemical way. I need to balance up what I enjoy more the cakes or less pain? It is not a miracle cure but I do believe it can help- I have tried so many drugs throughout the decades, causing so many side effects to my poor body. So far the side effects from this diet has been weight loss, better skin, more energy. I will take those please. I will need to see how things go once I stop treatment for the cancer but at the moment I don't feel the need for the bad foods again. I treat myself when I want but try to eat well most of the time. I still juice daily (once stomach has settled) but i eat the majority of my meals they are just most veggie and non processed.
I am frustrated that my experience/trial has been messed up by the steroids so I don't know what causes what good and bad side effects but if the overall results are good I will be patient(ish) :roll:

I had a massive wave of fatigue hit me tonight, I went from absolutely fine sitting with my nephew to I need to get home now before I fall asleep. It was so quick it was tough to drive home but I made a quick exit and got home and had dinner which helped but WOW it was like hitting a wall!

Slow day tomorrow to recharge but hope to get out later- I still feel I have days to catch up on from last week

Thistle

thistlegirl

The farigue has not lifted
OK my night was interupted at 2am with the joys of living on the ground floor on a ciryy tenament, but after 3 hoira got back to sleep and slept through to make the hours up.
Anytime I plan anything things get worse. yesterday I checked in with sister number 2 (no kids) if she could chum me today. We call it commando shopping, in and out, military precision, no time energy wasted. So with her driving I made it to the 3 shops and got what I needed but only just
I don't know whats going on, is it the steroids trying to have fun during there last 6 days of full dose?
I have eaten well today bit no juice- my only plan for tomorrow is 2 juice 2 juices to try and give me a boost. I have a catch 22 here as easy as it is to juice and the cleaning is minimal I could not cope with it today, first time in 3 months that this has happened.

Thistle

stickywicket

Some time, when this is all over, you must write the 'Sensible Guide to Coping with a Debilitating Disease' You do it so well and with so little fuss. I love the concept of 'commando shopping' though my eyebrows were raised a little at first - 'going commando' means quite a different thing round these parts

thistlegirl

Sticky- means that here too! I think that would be extreme commando shopping and probably means that I am not fit to be out the house on those days if I can't even get dressed properly

OK now for the typos from the previous post: :roll: :roll:

Farique-fatigue
ciryy-city
hoira-hours
add = no time or energy
bit no juice- but no juice

My sister and I bought a flat together to get on the property ladder so we lived together for a few years-after not getting on that well as kids it was a big surprise how well it worked :shock:
I started off mobile but ended up on crutches and after some adjustments she become a really good carer. She is still the one that I go to in bad times for the basic and sometimes private stuff that I am reluctant to share even with family if I can help it- bathing etc. :oops:
My other sister is great for distractions etc but is already juggling 2 kids so it is hard for her to help a lot with the care side- although she is a great cook!

I am off to stay at my parents again for a couple of days to try to knock this fatigue but we will see. My dad has promised that there will be no visits to A&E this time joking aside both times I have tried this he has ended up there so who knows!

Jenny

stickywicket

Hm, so there is one constant whenever your Dad ends up in A&E

Seriously, Jenny, go and enjoy it as much as possible. I'm sure your Dad will be Ok this time round.

Typos? They just make life more interesting, as long as you don't accidentally hit on some naughty words.

That's a lovely story about you and your sister. My sister and I had to share a bedroom when we were kids. We'd very little in common. I'd have been much happier sharing with my brother but it wasn't an option. My sister's just been over for 24 hours. We get on well now, too, though we're very different characters.

thistlegirl

So I was at my GP thia morning and got a big congratulations for loosing the weight. she said 3 stone is amazinf, and loosing it while on 60mg prednisone is miraculous. She is happy with the veggie based diet and no processed stuff, it is just being sensible!

I am seeing my rhumy doc on Thursday. She is the one that pushed for the biopsy to be done when everyone else was ready to leave them as just lumps, I have to thank her for that! I haven't talked to her since I was officially diagnosed, though I think she knew when she talked to me on the phone....
I am interested to see what she makes of the diet and weightloss- weightloss has been politely mentioned before by her.
I need to get my questions organised again, I know I wrote them in a previous post ao will look them out but got more now:

my left ankle is the only joint during my infusions that still complained so last visit she suggested getting it injected under ultrasound for more accuracy, YES PLEASE! well there was a big delay wirh this and it ended up with me getting examined by the ultrasound guy 1 hour after being told I have cancer. ..so when he turns round in his expert opinion and says there is not much visable joint damage to need injecting, lets just say I wasn't up for a fight. so he reported to a different consultant and the injection was cancelled :x
Even on ridiculous amounts of steroids and painkillers the joint still aches, not sharp pain, but complains about most positions it is put in. In the scheme of things I know I am lucky it is lower level pain but so annoyed as it could have been treated- I am interested to see if she feels overruled or not?

my main thing is the drug break and how quickly I can get help if it all goes wrong, it has been so long since I have been treatment free I am a wee bit scared to see what happens.....

off to compile my notes for Thursday, staying with my parents for a couple of nights- no a&e trips so far, fingers crossed.

Thistle

Jenny

kentishlady

Well done, Jenny. You deserve a gold medal. You really are an inspiration to all of us. Treat yourself to something nice, you deserve it. Beryl. xx ((()))