Appointment with Rheumy..

[chlopage]

At last Monday is here (was).. ! Apologies for the late post, I have had a mega day.

Some you know last week I was MoanyChlo, and a could not wait for today to come around! I have been in so much pain, for such a long time (forever it's felt like..) and my 6- weekly appointment with my Rheumy Nurse is finally here.

I decided to take my employer (Bosslady) with me; my mum lives abroad, and I don't have the best relationship with my father. She's more like my surrogate mother, we both have a warped sense on humour and she can make me laugh when I am at my lowest. I have been working for her the past 8 years, and is very much apart of my life and do not mind in the slightest if she come with me to my appointments. It helps with her understanding, both practically and professionally - let alone ask any questions she has or on my behalf if I am too scared/forget to ask.

So I am geared up, got my list of things to ask.. And when I get called in, I am slightly shocked to see my Speciallist instead of nursey! (Bonus) - nursey retired a couple of weeks ago!

Anyway, we looked at bloods they are not good - but then again with uncontrollable arthritis they are not going to be! I got a full examination of my joints, although she didn't touch my knees - she looked at me and said she "didn't need to!!" I agree, they are both the size of pineapples (I don't know why I have decided they look like pineapples.........?)

One thing that did slightly dishearten me was that I got told that the Sulfasalazine can take up to 6 months to fully kick in... A contradiction to what I was told previously (3months) - I'm three months in, half way there and barely coping. I nearly cried there and then. I had explained that I went to my GP last week for pain relief and was on up to 60mg of codeine daily if I needed it. My specialist didn't want to change my DMARD, give me another steroid injection, and wasn't prepared yet to start any Anti-TNF treatment. All whilst she she was saying these things I will admit inside my head I was screaming, "for gods sake, I have been flaring since December, I've been living with this for 24 years I'm turning 26 next month, I've already lost a kidney to this retched disease, yes, I know I am young, but I need to get help now! Stop waiting around !!!" (Me being a sulky cow) - I glanced over at Bosslady, I thought she was going to either blow, or cry on my behalf!!

Anyway, after my moment - I managed to calm myself down without releasing the Wraith of Chlo (good girl).

I'm pleased to say I have managed to convince her to give me something to help. So, I am now on Prednisolone reducing gradually over the next 10 weeks, and Vitamin D supplements once daily, along with my 2g daily of Sulfalazine AND she was good enough to prescribe me extra codeine for when I run out (saving me another trip to the GP). What makes it slightly better for me, is that she has agreed to sign the form for me to get a bus pass, and she will write a letter to go along with it when I apply. My Specialist will also write to my GP to explain that she is happy to me to have stronger painkillers if and when I need to. Now, it is time for me to visit the vampires in pathology (the bane of my life.) .....

First thing I noticed was a Beaver, dressed as a vampire.... I could not contain myself. I burst out laughing, THANKED the pathologist for being so gentle, and nearly skipped out of pathology (I think I'm going potty).

After spending £25 on my pescription today - I thought Bosslady's jaw was about to hit the floor, I will be buying myself an annual prepaid pescription card thing!

I was then taken for lunch, and a coffee.. Pondered about what to do for the next hour or so before I started work..

Today, was the birthday of a regular legend who always came into pub at 9:20pm... Every night without fail, whom sadly passed away from cancer in Feb. We decided to visit his grave and lay some flowers on behalf of his friends from the pub. - as we got there, we found his grave and had a chat with him for a few minutes, as we stood up and stepped back, taking one last glance at where he rests... We noticed some noises around us..... It had to be, it just had to be..... My phone playing Monty Python's Always look on the Bright side of life.... !!!! I slapped my forehead and quickly made way back to the car, whilst Bosslady giggled until she nearly fell over.

I could ramble on about the randomness of the rest of my day...but I won't and just tell you all the best part of my day.. I think I have a date with a lovely lady next week (after a year of being single... This is a massive thing for me!) wish me luck!

All together now... "Some things in life are bad, they can really make you mad, other things just make you swear and curse... When you're chewing on life gristle, don't grumble, give a whistle... And this will help thIngs turn out for the best.... Andddddd....."

Lots of love and gentle hugs,

Chlo x

[Fruitandnutcase]

So glad you had a successful consultation with your specialist and you got what you really needed in the end. I'm new to this and I was really sorry to hear you are so young and in such pain - although many years ago I scribed for a lovely girl with arthritis who was doing A levels so I knew it affects young people too not just oldies like me. Your boss lady sounds absolutely lovely too, how lucky you are to have someone like that in your life. Your graveside visit really made me laugh, it reminded me of the illegal scattering of my mothers ashes many years ago. My mobile went off and nearly scared me to death.

Sending you the very best of luck for your date with the lovely lady 😊

[chlopage in reply to Fruitandnutcase]

Hey fruit and nut thank you, but no need to feel sorry, I'm lucky - I don't know any different - I feel sorry for everybody else who hasn't lived with it for long

Bless your mother (thank you for the giggle!) - I too have heard of people illegally spreading ashes and their funny stories, like shuffling around from something out of the great escape!

All the best

Chlo x

[Fruitandnutcase in reply to chlopage]

Yes, my dental hygienist's father wanted to be scattered at a famous football stadium and with my experience of scattering ashes the Colditz approach was what I suggested. I'm sure her dad would have been delighted.

That's one way of looking at it that you haven't known any difference whereas we are now having to get used to it.😊

[chlopage in reply to Fruitandnutcase]

It is true! But I promise it will get easier. It will always be a pain to live with, (as myself have only accepted it in recent years) - but it will happen eventually x

[Fruitandnutcase in reply to chlopage]

Thank you, I'm surprised your pharmacist didn't tell you about the NHS prepaid system. I remember years ago when I was paying and started something new that was going to be long term the pharmacist came out and told me about it, it really was worthwhile because as well as the regular stuff I was taking it covered antibiotics and extra 'one off' prescriptions.

Meanwhile good luck with your date next week. 😊

[chlopage in reply to Fruitandnutcase]

No! They didn't, but then again everyone is out to make money, I found out through my customers at work.

Thank you very much!!

Chlo x

[creakybones in reply to Fruitandnutcase]

Thank goodness we don't to pay for prescriptions here in Scotland. I have a huge big tub with all my meds in it. Looking at them I think there must be about £1000 worth of meds. Irenex every cloud.irene

[Fruitandnutcase in reply to creakybones]

Not only that, when my mother was ill and I stayed longer than I had pills for my sister's doctor gave me a repeat prescription for three months - even though I told him one would be fine - down here you only get one month at a time unless it is a special request because you will be going on holiday in which case you can have two months, it is so inconvenient and I can't see that it saves anything really.

[Hidden]

Wow, what a day!!! One tip that worked for me was to go to the Rheumatologist with all my symptoms and side effects from the DMARDS written down to give to him. He seemed to be more attentive when I did this.

I can't imagine having lived with so much pain and discomfort for so many years!! You are doing great and obviously have some great coping skills. Carry on. Cheers, Doreen

[chlopage in reply to Hidden]

Thanks for the tip Doreen

I shall make a note if and when I notice any side effects. As I mentioned I'm only half way their on my first DMARD - so it (in my opinion) isn't actually doing anything yet!

I will do, don't you worry

All the best,

Chlo x

[cathie]

What a riot! I hope the meds start working for you.

I had to use hospital transport as my husband cant drive at the moment following a hip replacement. I hate going there as there's always something ... anyway if anyone is able to use it (qualify I mean). The crew who fetched me were really lovely and jokey and put me at my ease. We ended up swapping recommendations about the best chocolate in Edinburgh. There are hidden advantages. (sometimes) XXX

[chlopage in reply to cathie]

Hi cathie, and thanks.. So do I! I will admit I feel abit strange and fuzzy around the edges, but that could be because of the codeine and steroids. I feel funny, funny, not Dodgey funny and bad!

I often find that laughing at myself, and at things that are going on around help.. I'm serious about my disease, but i have accepted it.. So I think I cope quite well.

Momma chocolate... And the verdict of the best chocolate in edinborough is...?

I tried driving once.. I got to test standard, had surgery which knocked my confidence and I kind of gave it up. There's no way I can actually afford to run a car at the moment anyway! Bosslady wants me to do my CBT and get a moped, I'm scared with my wrists at the moment they will seize on the throttle - can you just imagine that!!! Ahaha!

Kind regards

Chlo x

[cathie in reply to chlopage]

Are you nearby? We decided it was a tie between the Chocolate Tree and CoCo, but Mary's Milk bar on the Grassmarket has hot chocolate/ ices which are rather amazing.

We need exquisite things like this to keep our heads above water.

XX

[chlopage in reply to cathie]

Oh no... Not at all I'm other end of the country but it's a good to know if I do ever venture that way - In Town they have just open an ice-cream parlour... I'm yet to visit and gorge myself xx

[Hidden]

That's one of my favorite songs!

Wow what an eventful day!!!! I think you went through every emotion a human can have in one day and I'm glad it ended on you getting a date with a lovely lady next week.

"Some things in life are bad, they can really make you mad, other things just make you swear and curse... When you're chewing on life gristle, don't grumble, give a whistle... And this will help thIngs turn out for the best.... Andddddd....."

Hugs

Sue

[chlopage in reply to Hidden]

Love Python songs.. Cheers me up no end thank you I'm sure everything will go fine!

Chlo x