Introduction

Hi, Thanks for viewing my blog. It lets me have a rant and I may even help someone along the way. Got the idea to do a blog following using an Arthritis Forum for the first time at www.arthritiscare.org.uk

I suffer from Psoriatic Arthritis which is very demanding in all aspects of my life and this is my story on how I deal with it on a day to day basis.

I have been spending lots of time recently researching arthritis and pregnancy, there isnt loads of information out there and the most helpful thing i have found to date is forums and hearing other peoples story. This just confirms to me why I am 'blogging', if someone like me wants to know they are not on their own.

Saturday 24 December 2011

A festive entry

So its Christmas Eve, the big day is only hours away. I wanted to take this opportunity to reflect on the last year; which has been both the best and worst year to date.

I am so grateful that I was well on our wedding day and was able to walk down the aisle. My family made me so proud that day; happiest of my life - it was a truly amazing day and I got to marry the man of my dreams. A huge thank you to everyone that helped make our day so fab. We also had a fabulous pre wedding honeymoon to Egypt and met some lovely friends and also had a fantastic honeymoon in London following the wedding.

On the flip side I have had quite a poorly year; even before coming off my medication I was struggling a lot of the time but since coming off my medication I have had terrible flare ups and my fits have reoccurred. I am hoping the New Year will resolve a lot of these issues and fingers crossed for our family wish to come true; as this in itself has been such a difficult stage to get to. You are definitely not told about all of this when you do sex education or biology at school where it is made out to sound you only have to look at one another and there'll be a baby. If only it was that easy!

So to everyone Merry Christmas and Best Wishes for 2012. Thank you to everyone that has taken time to read my blog since I started it; I hope you have enjoyed/found informative what you have read. I will be continuing this throughout 2012 so you can follow me on what I hope will be an exciting journey.

Special shout to http://operationuptheduff.blogspot.com I hope the New Year brings you your 1st child and lots of good health.

So enjoy the season guys, stay safe and spare a moment to think of those which cant be with you as well as those which are not fortunate enough to have any family around them this Christmas.

Wednesday 21 December 2011

Semi Successful

So a semi successful Dr's trip today, after getting through at 8:10AM (10 minutes after opening) my Dr I wanted to see was sold out; oops! sorry, fully booked.  So I went to see the lovely Dr A and got some antibiotics at long last to hopefully clear aware my tight chest and cold which I have been fighting the last 15 weeks. Whilst this Dr has a fabulous bed side manner I don't always have the most confidence in him so couldn't discuss with him something he had mentioned last time I saw him which concerned me regarding my ALT levels. Something to do with my liver! A level of 479 and from what I have been able to see online is very high. I think at that previous appointment he was referring me but it wasn't clear. I will have to go back in 4 weeks anyway for another fit note to cover time away from work until I have seen the Neurologist. Little things like thinking 4 weeks from now will take us up to 30th Jan are the times the confidence falters. Maybe then I will get an appointment with the other Dr so that I can discuss this.

Its been nice having Hubby home today; although I wish I hadn't made him ill - but the company has been nice and the day has passed much quicker.

On a bright note and hoping to feel a little bit better and hoping all my family are well for it, Christmas is now only 4 more sleeps. Looking forward to spending time with the ones I love but also remembering all the people who cant be with us, love you and think about you all the time Nannie Duck, Grandad Bunny, Nana Joan and Grandad Jimmy xxx

Monday 19 December 2011

Practise for when we have a baby

So grateful that I was able to sleep through last night; I really needed it. I suppose its getting practise in for when we have a baby. Friday night I only got about 2 hours as the pain was so immense I could not get comfortable and every time I moved it hurt. Then Saturday my cold decides to come out again, only a few hours sleep again and I managed to get through a whole toilet roll trying to keep my nose excretment off the bed covers. By doing this I woke up yesterday morning looking like Rudolph and to go with the red nose, red, sore crusty lips! Attractive. I was dreading another night of clock watching whilst contending with the pain, the cold and my tight chest and cough! But all in all it wasn't bad, I slept through. The pain however does have a habit of taking over my dreams. I have lots of pain dreams; they vary, some being not very nice dreams and some being so bad I wake up in tears. The problem with the pain dreams whichever the degree is that they are so vivid and feel so real.

So I cant really talk about these dreams without giving you an example so I will use last nights as they were some of the milder. I went to a 'work camp' and it was run by Apes; everyone literally had to fight to survive until the Apes were satisfied. I somehow got hold of a champagne glass and broke it so I only had the stem and used this as a weapon. When all of this was over they then confirmed that all the survivors were pregnant (if females) or expectant fathers (if males) but I was pregnant with a Dog! Yes, a dog!

They're weird and sometimes quite scary although the worst dreams have to be where people close to me die or leave me. On occasions I even wake up feeling guilty as I have cheated on my hubby in my dream. I found this a really tough subject to approach with him as I cant lie even about something which hasn't really happened and the feeling of guilt was too much to bear. He has told me not to be silly they are only dreams but it is how vivid they are and when I am dreaming I cant determine that its not reality.

Pain is a strange thing, it can do lots of different things to you. Not helped at the moment by the fact I am in front of the TV all day currently. You couldn't guess I watched 4 of the planet of the Ape films last week? I used to blame the crazy dreams on the cocktail of medication I was on; it wasn't until I came off these in August that I even linked the dreams to the pain.

Wednesday 14 December 2011

In that minute I felt like ME!

It was really nice to get out last night and see the lovely ladies I work with but I have to admit I was quite nervous about how people were going to handle it. I tucked myself on the corner of the table and was able to hide my fits under the table. Whilst I had numerous ones they were all rather mild and just in my leg so relatively easy to hide.

I felt a bit awkward to begin with and as though some people felt uncomfortable to make eye contact with me, but things soon relaxed and festivities begun. Secret Santa was amusing however not much of a secret when nearly everyone knew who got their Secret Santa (isn't it always the way?) My pressie from Santa was brilliant, a phone holder which will help stop my phones vibrating on the desk getting on the teams nerves and mini hot water bottle  hand warmers, absolutely fab for my cold and painful hands. I was pleased that the secret Santa I got was taken in the way it was meant (as a joke) and it got a good laugh. In that minute I felt like ME! However the reality came crashing down knowing that I wouldn't see most the girls again until February when I can hopefully return to work once seeing the neurologist.

I got home and was in bed by about 9.30 and it has taken me all day to get over my few hours out. I feel absolutely exhausted and extremely achy which hasn't helped the fits. Luckily I have slept a lot of the day away so I'm hoping I will be able to sleep tonight too.

What to do for the rest of the week? I might just make an effort to get dressed and not spend the whole day in my PJ's; other than that I cant see my week getting much more exciting and will probably resort to a DVD marathon. On the bright side Christmas is just around the corner which means I will have some company from the evening of the 23rd to lunch time on January 3rd. So this year I really am looking forward to Christmas. A few weeks ago I wasn't but after being stuck at home day in day out again and an inevitable time at home until my neurologist appointment Christmas has become far more appealing!

Saturday 10 December 2011

Porridge diet????

MMMMmmmmm, Porridge! Think I tried it as a kid but couldn't stand it but tried it this morning and its actually really nice and really filling, I haven't felt hungry all day.

OK so today wasn't too bad at all. My 4 1/2 year old nephew had been told what to expect and the other two are completely oblivious to it anyway. Most of the fits thankfully weren't seen but when on an iggle piggle ride the 4 1/2 year old saw my fit and look quite horrified but quite quickly composed himself. So his reaction wasn't either of the two suggestions he came up with it when he was told. Option 1 - Laugh at Auntie C when she shakes (his mum said this might not be very nice), Option 2 - Shake with Auntie C to make her feel better. Obviously the shock took over but it was a nice feeling once he had composed himself and came to hold my hand. Love them. So all the kids and the dog enjoyed the trip to the seaside; it was cold but so nice to get out the house and alleviate some pressure off hubby who seems to just constantly worry about me and look after me. Instead he got to enjoy some time with his nephews whilst knowing I was OK.

We got back and it was very cute watching the oldest of the 3 nephews helping his Uncle bath the dog, but it was quite amusing when he wandered off as it got boring and left hubby all by himself trying to fight to keep the dog in the bath as well as shampoo and rinse him. Next it was my turn, I had promised to make some biscuits with them - hmmm! more challenging than I anticipated, two 2 year olds, a 4 1/2 year old, an oven and saucepan of stuff heating. Maybe its just because I'm quite exhausted; after all first thing this morning I was struggling to even write an email due to the pain in my fingers. Even as I type now I am trying not to 'Ouch, ouch, ouch!' every time I key a letter.

One lot out and one lot in, a visit for mum and dad who had put a lovely Christmas hamper together for us. Don't know what I'd do without them; they do so much for me and always have, I hope that I will be able to do the same for my kids. Along with the hamper they brought the Christmas decs so hubby was happy as he has been bugging me since 1st December to put them up. I don't get all that excited about Christmas; its just another day. The day itself is lovely and I love seeing people open their pressies but the build up is what I can't stand. Hubby on the other hand is a big child and has also been bugging me to see Arthur Christmas so I took him last night; it wasn't actually as bad as I imagined and it had quite a good story but I wouldn't say overly child friendly.

So before decking out the flat it needed a bit of a blitz, so absolutely exhausted now. Tree is up and looks really pretty but I am looking forward to doing nothing else tonight and very little tomorrow.
So pizza and X factor final it is and I am guessing after a day like today I will sleep like a baby, well I hope so anyway. (That's a baby which sleeps through, not one which wakes every 5 mins)

Friday 9 December 2011

A long wait ahead....

Neurologist appointment is through, 30th January. I am going to go insane if I have to stay off work that long!

I am taking it easy and staying safe - not having a bath or shower unless hubby is here to supervise me; I don't want to drown. Not leaving the house unsupervised in case I fit and collapse - as that would be embarrassing!

But I find I am better when I keep my mind active so just pottering around doing little bits around the house where I can stop and sit down if i feel a fit coming along.

The fits have taken my mind off the constant pain from the arthritis though so I am trying to think of some positives. This is a good thing as the pain has been rather intense over the last few days especially at night.

Looking forward to having company over the weekend. I am seeing my youngest 3 nephews but I am just hoping that if I fit it will not scare them. At 2 and 5 they don't always take too much notice but the last thing I want is for them to freak out so I am a little nervous about it.

Tuesday 6 December 2011

Is it ever going to just be simple?

I start dealing with one thing then something else decides to rear its ugly head. I found myself in A&E yesterday as the fits I got over 10 years ago have decided to make an appearance. Surely it has to be more than a coincidence that I had these before starting my arthritis medications and now that I have stopped them.

Of course this trip was as successful as my hospital stays years back; all tests coming back clear and no further forward! So after 4 and a half hours having tests I was allowed to go home. I was NOT impressed with the cannula he decided to put in my arm when taking bloods; and he would not take it out! I could feel it and it hurt on my already painful joints, argh!!! I thought as I am an adult when I told him to take it out he would but no such luck, 2 hours I had it in! They took it out when I was a child and couldn't deal with it.

So it was suggested I go back to my GP; as whatever it is, isn't life threatening (thank god)! However how do they know its not when they don't know what it is. You've got to laugh, they didn't even test for the infection which was found all those years back and said to be the possible cause.

They also asked me to speak to my rheumatologist of which isn't an easy task either. I did however and they think its highly unlikely to be connected to my arthritis.

So doctors again tomorrow let's hope it will get me somewhere. I need it sorted, I want to be able to drive! Not being able to would be like not being able to see or hear or talk. Far too devastating to articulate.

Again I am stuck at home as understandably I'm a health and safety risk at work. Trying to stay positive as I don't want to get too down as that won't help but its so hard, its like a constant battle!!

On a positive note results from blood test 1 are eventually back and got the result we were hoping for so just a waiting game for blood test 2 results.

Surely things can only get better.

Thursday 1 December 2011

Always listen to your mum, they always have been right - whats the chances of that changing?

Getting a little nervous again as I have 2nd set of blood test taken tomorrow, not as worried as last time as I know what to expect. And I know that this time I will not look when the cotton wool is taken away; that'll save me going woozie!

How long can you possibly have a cold for - 10 weeks and counting!!! So my good ole mum has convinced me that its time to see the doctor again. The thing is i am slightly stubborn and don't like to admit i'm ill or have anything wrong at all. I called my mum this morning and mentioned to her through the course of our conversation that i have been getting chest pain and that i have started having fits again like what I had when I was in my teens. The concern in her voice was enough for me to agree that I would go and see a doctor.

So tomorrow morning it will be on the phone as soon as it turns 8am, to fight to get through to get an appointment; but it makes more sense going to the doctors sooner rather than later and coinciding it with my blood tests, if i manage to get through before all the appointments are taken. Its funny no matter how old you get you still listen to your mum! Love you Mum, thanks for worrying about me so much x