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.

Wednesday 31 July 2013

Erm, hello? Mother over here not very amused by this!!!!!

Wow! Where have the last 2 weeks gone. Things have been a little bit manic and upside down.

When I last wrote as you know I was in lots of pain, I didn’t however mention that my little boy was poorly. He had come out in some spots, at first I thought it was chicken pox, but soon discovered it wasn’t. He was covered head to two in little spots, he wasn’t quite himself either. His temperature had rocketed to 39.3. We took him to out of hours where calpol and ibuprofen was recommended and told it was just a virus. The following day the temperature dropped to 34.1, after ‘googling’ it, it made us aware that a low temperature can cause hypothermia, so another call to 111, and another visit to out of hours, where we were told to keep him wrapped up. How bizarre, his room was 25 degrees, he had a sleepsuit on, was wrapped up in a 2.5 tog sleeping bag and had a hat on, and yet all night we couldn’t get his temperature to reach 35 degrees. I just knew something wasn’t right (guess this is what they call mothers intuition!), so I took him to the GP. My baby boy is far too precious to me to ignore these symptoms and the fact he just isn’t quite himself. The GP agreed it was just a virus, and I was satisfied with his explanation and agreed with his suggestion to keep him out of circulation for a week.

However, the day after I last posted, I washed him at 8am as usual and he still had the rash which he had, had for 5 days. Less than an hour later I noticed the rash on his leg had changed, I pressed on it and it didn’t disappear. So out came the glass and the glass test reached the same conclusion, the rash was not disappearing. So by this point I was a little worried however my little boy was still alert and responsive and with everything I know about meningitis (albeit very little) the rash is generally the last symptom by which point the they would be very poorly. I therefore made the call to phone my GP practice, who I have to say since joining them in December have impressed me no end. I was seen very promptly, and the Dr was a little concerned but as he was so alert, was in two minds what to do about it. He suggested going to the hospital to be on the safe side and I completely agreed, you can never be too careful. Especially when he is only 6 months and can’t tell you how he is feeling. I don’t really know how I held myself together; I can honestly say I have never been as scared as I was at that point and for the next couple of days.

We went straight to the hospital, and he was looked over by a dr who wanted to take bloods and also suggested possibly carrying out a lumbar puncture. I agreed to the bloods but had to speak with hubby before deciding on the other test and I needed to know more about what it involved, risks etc...

The bloods were traumatic! They struggled to find a vein anywhere and ended up having to go in at his wrist, where they canulated too, so had to splint his arm up to keep it straight. The blood went everywhere, he was screaming. And then when they tried to tape it down and bandage it up, because he was sweating the tape kept slipping off. The Dr seemed to find this amusing, or at least that’s what I got from him laughing. ‘’Erm, hello? Mother over here not very amused by this!!!!! ARGHHHHH!!!’’ I was so angry.

After that and speaking to my husband we did agree to the lumbar puncture but I did ask if anyone else could carry this out, my confidence in that Dr after the bloods wasn’t all that good. Unfortunately, not, but we had to make sure they found out what was wrong so that he could be treated. I couldn’t go in the room with him, and still feel awful for not doing that now. Instead, I sat in the room next door, hearing him cry, it was complete torture, and I just wished I could take it all away from him. Sitting in that room, it took me back to when I was a teenager and my first experience of hospital. I am glad unlike me that my little boy is too young to remember! This was the type of experience that has made me cautious and untrusting of hospitals ever since. They had a similar difficulty with my blood and that went everywhere too. They told my parents to prepare themselves for the worst, as they didn’t have any idea what was wrong with me. It wasn’t until I was sitting in hospital with my little boy that I had any idea how they must have been feeling. OMG, this is hell. This is the part about being a parent I am not liking.

He got through the lumbar puncture like the brave little boy he is and then they began daily IV antibiotics. We stayed in hospital on the same ward I did 14 years ago, for 2 nights and the best part of 3 days. We went home knowing most of the results were clear but we would need to go back the following day for the results of the blood cultures and he would need to keep the canular in, in case they needed to continue with the IV antibiotics. The poor little boy, the arm which was bandaged up due to the canular was the thumb he sucks, so he couldn’t get to it.

The following day we went back and the cultures were clear too. They put the whole thing down to a virus. The canular came out and he got his thumb back. He also got a trip to ‘Toys r us’ and some new toys for being our brave little boy.

What a hard experience, and I am sure I am still catching up on my sleep, words can’t describe how happy I am that my little boy is OK though. I am truly blessed to have him!

I am still suffering with my pain and managed to get to my emergency rheumy appointment, we didn’t go for a steroid injection and instead we are trying a new painkiller, Gabapentin. So far, so good, no side effects to note and it seems to be taking the edge of the pain, making day to day a little more manageable.

I feel like life is just about getting back to normal now, the hospital stay really turned things upside down.

Thanks for reading again, will keep you all posted on any more developments in my life, which now isn’t all about my arthritis, but what comes with being a wife and mother too! Which reminds me, we have also celebrated our 2 year wedding anniversary in the last 2 weeks too. Love you hubby, thanks for being my rock xxx

Wednesday 17 July 2013

The BEST Medicine

A well overdue instalment to my blog. Who knew how busy a baby keeps you?

Well I am enjoying every second of being a mummy, and my little boy is going to be 6 months next week. The time really does fly. He is rolling over, sitting up and not far away from crawling or cutting his first tooth.

So, the flare settled down, and whilst I was no means pain free I was able to push myself through every day. I want so much to be able to avoid the drugs after the damage they done to my body. I met with the physiotherapist as this is one of the things I have requested to try; the medication really is a last resort! When I met with her I had started flaring again, and hydrotherapy was also suggested. To date I have had 2 hydro sessions, the flare started to settle but BOOM!!! I am officially in agony again. My little boy really is ‘the BEST medicine’, I can’t just give up, and he gives me a reason to get out of bed every morning.

Last night was the first time that the pain has really got to me in a long time. My joints felt like they were on fire and as though someone had taken a sledgehammer to them. Pain is so hard to describe. I laid in bed on my memory foam mattress and it felt as though I was lying on a bed of stones. The pain had me sobbing, this does not happen very often and I feel somewhat disappointed that I have let it get to me. But the sobbing was a combination from the excruciating pain and the frustration of this horrible disease. It has been suggested by my rheumatologist that as well as the arthritis I am likely to have fibromyalgia, I’m currently waiting a referral to pain management.

I have however, throughout my sleepless night made the decision to call rheumatology and request some help, probably a steroid injection. I reacted badly to this before, by going numb all over but it did take some of the pain away. I have to think about my little man now too and I NEED to be able to look after him. I would prefer this to be as comfortable as possible. So I have an appointment at 11am on Friday. I still want to avoid continuous medication but I am at the point where I need some relief. Hopefully, with this, physio, hydro and pain management I will be able to find new ways to deal with it.

As from day one, I hope this blog helps people to understand the condition. I wish people would be less ignorant, whilst I have learnt to ignore the looks and comments when I park in a disabled space, my husband finds this really frustrating, I tell him it is just ignorance. On the outside, I’m young and healthy looking, but you should never judge a book by its cover. Believe me; if they want to park in the disabled bays I would be more than willing to give them this, the catch, they would need to take this horrible disease too. I don’t think I’d have any takers somehow! These little things just make day to day things people take for granted just that little bit easier for me.


Now my little boy is in a better routine hopefully I will be able to update you all more frequently, thanks for reading!