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.

Monday 19 March 2012

Resulting in...

What a day! After another awful night sleep, of fits and pain resulting in a dopey morning; resulting in injury, resulting in more pain, resulting in a two hour visit to A&E!

I bashed my elbow on our door on the way out to work, not overly aware of what I had done and hubby making me aware of the 'crack' he heard. Oh and then the pain! But soldiering on as I do. Hi! Ho! Off to work I go! Didn't have much of a productive morning and after much nagging from my colleagues to go and get my arm checked; hubby took me to A&E. By this time from keeping my arm still I had gone stiff too! I also had a rheumataology appointment at 4.15 so when I still hadn't been seen at 3.45 I went to the desk which pushed them along. The Dr said it was broken as I could move it (so could my nephew but his was broken) and he wouldn't xray due to us trying to conceive.

So I was in time for my appointment not that it mattered as I wasn't see until 5pm. The result came back wasn't exactly Lupus, it was something which was indicated in the Lupus tests. APS - antiphospholipid syndrome easy to understand as sticky blood. Dr C my normal consultant was in agreement that this wasn't something which could have been left until my appointment in June and needed re-testing straight away to check it wasn't a false positive; it could also explain the fits. Dr C thinks it is important to get this checked and if necessary diagnosed and treated ASAP as it can cause miscarriages. It was as much as I could do not to burst into tears when he started to say this; as if this isn't challenging enough already. So leaflet in hand and blood forms I went to yet another waiting room to get my bloods taken. Began to read and promptly stopped reading the leaflet. I think I will just wait for the results. Dr C thinks an MRI should be done in regards to this and the fits too!

I came home and got ready to update you guys and came across some sad news my friend who is also trying to conceive has miscarried, my heart goes out to her and her husband; I just hope this doesn't make them give up.

Saturday 17 March 2012

Persistence

Another long week, still finding full time working quite exhausting but I am hoping I'll will get used to it again - it will just take a little persistence.

Persistence is definitely something I have lots of, dealing with this horrible disease. As if the constant pain and discomfort isn't enough, the flare ups are just agonising. I wish our British weather would decide what to do with itself - the damp this week has certainly not helped. I don't really know how to explain the pain, imagine be covering head to toe in bruises and then being bashed about; on top of that every movement you make feeling your bones grind together. That's as close as I can get to any type of description. This week has been bad, I've relied on hubby to help me in and out of the shower. He's been able to walk or drive me to work but as he started his new job this week I've been left t get home on my own. I am very fortunate that on the days where I wouldn't have made it home walking one of my lovely colleagues drove me home. I don't think they could ever know how grateful I was of that this week.

Hubby's job is going well so that's all good - he has a smile on his face again. That makes a difference and gives me another reason to keep up the persistence of being off all the drugs to try and conceive.

At 3am this morning it was a different story; I can not describe the pain I was in apart from the fact it is so much pain that I actually felt like I was going to be sick; but was too stiff and unable to move. The frustration of this is GRRRRRR!!!!! I lay awake in pain not knowing what to do with myself until 5am when hubby wakes up and asks me if I am OK. It was as much as I could manage not to burst into tears, he got up and got me some paracetamol; whilst not make much difference at least it helped me get another couple of hours sleep.

I will keep persisting as I keep telling myself 'It's all about getting from A to B' and it will all be worth it when we have that little baby in our arms. I really hope its not going to take too much longer though.

So a chill out day in my PJ's today and a meal out tonight with some old work friends which I am really looking forward to. It will be nice to catch up as its been a long time and will be something to take my mind off this pain for a while. I think hubby is looking forward to me going out, he is having a curry which my mum made for him on his birthday which we've frozen. I don't do curry so he doesn't get much chance of having it, bless him! So his night except from chauffeuring me will be curry with Lets dance for Sport Relief, with the dog for company.

Tomorrow he is working so spending the day with my mum and then seeing my mother-in-law tomorrow night. So Happy Mothers Day to all you Mummies out there (with any luck I'll be one by next mothers day) but a special happy mothers day to my mummy. Thank you for looking after me and worrying about me all the time, but I'm a big girl now so you don't have to worry about me quite as much. Love you xxx

Sunday 11 March 2012

I might be 25 but my body definitely isnt

Its been a hard week. First week back at work full time which I handled quite well. I may have been in my PJ's as soon as I got home from work and straight to be after dinner and hollyoaks but I got through it.

I'm glad to say hubby starts his new job tomorrow; whilst it will still be a bit of a wait until we get a pay packet at least I know its coming. I have to say I'm not surprised why so many relationships fail in our society; its been a difficult time for us with dealing with the normal day to day things that we have learnt to manage but also dealing with having next to no money. That has been a challenge!

So the weekend came and I was tired and a little achy but managing. Yesterday saw my nephews 5th birthday party, a soft play party and bouncy castles with near on 20 kids aged 5 and under! After a while hubby and I ventured onto the bouncy castle to 'assist' all the kids - and on a couple of occasions the bouncy castle collapsed - PANIC!!! Then I realised that I might be 25 but my body definitely isn't. I fell to the floor and just couldn't get up, I'm sure all the kids found it quite funny. 2 hours later I was exhausted and really starting to feel the pain so I was grateful of the evening just chilled out in front of the TV.

I woke up this morning or should I say I was woken up this morning; apparently hogging the bed. Then spent the next hour and a half clipping the dog, then bathing him. Then went out on a walk over the park, hoping it was going to loosen my joints up a bit. Instead hubby 'accidentally' kicked a football into my back so now I am back on the sofa chilling out again as I figure that along with some painkillers might just sort me out.

Good thing is the dog is happy and fast asleep, not sure how long that will last. Tomorrow will be the first time in over 6 months that both me and hubby will be at work all day.

Saturday 3 March 2012

I am NOT a yo-yo

After leaving a message on the rheumatology helpline on Monday evening and still not hearing anything by Thursday I was getting pretty impatient that I resulted to calling the line for the department instead. Lets bear in mind they say they will respond to messages from the advice line within 48 hours. The phone line to the department kept ringing with no answer. Eventually Friday morning I got through and all they could tell me was to call the advice line.

By this time I am pretty annoyed so end up leaving quite a short message on the advice line - saying I'm quite anxious to understand the results and I have been worrying about them for the last week. At lunch time I went for a team lunch and typically they chose to call me back then.

Lets wind me up - as if I'm not feeling rough enough at the moment what with my general arthritis pain, sore throat, ear ache and still having the never ending cold along with dealing with my seizures. Yes lets make this worried, and by this point pretty annoyed patient even angrier.

Its OK apparently I have had a positive result on a Lupus test which my surgery notified me off but the rheumatology department cannot discuss results over the phone and will just discuss it in my next appointment as it is ONLY part of diagnosis. What? My next appointment? You mean the one at the end of June? I DON'T think so.

So I let them know I'm not prepared to wait this long and they tell me I will have to get my GP to write to the consultant to get them to see me earlier. I am NOT a yo-yo, the Dr sent me here! She tells me she cant just book an appointment. 2 minutes later I have an appointment with my consultant on 19th March. Why did I have to kick up such a fuss though, can they not understand I'm a person; who is genuinely worried. I am always ill (as I told her) and just want this sorted. On top of this I need to know if these results are going to have any bearing on having a child; really something I cant wait until June for. I don't know how I keep it together as much as I do; not sure the people in the restaurant would agree though as I gradually raised my voice during the phone-call. To all the girls at work, I apologise for any embarrassment I caused.