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.

Tuesday, 26 January 2016

Tea rations

I started the methotrexate a week ago today. It's been a busy week with my sons birthday so hard to tell if the tiredness is related. I know that most people say, of course you are going to be tired, you have a baby and a toddler -but I really can't blame them  they both sleep through; it's me which doesn't!

Apart from the tiredness the initial side effects have not been too bad, I felt a bit nauseous the day after the injection and walked around like a zombie. The worst of it was a horrendous headache the day following the injection. Of course, all of this could just be coincidence. It will take a few weeks to establish what is linked to being on the methotrexate.

I don't usually, but I actually read the patient information leaflet which came with my medication and was distraught to find out that I need to try and avoid too much intake of black tea. Now alcohol that doesn't really bother me, I don't really drink but my black tea Nooooooooo! Don't take my tea away, I need that to function. Therefore I have been on tea rations since last Tuesday. I decided two cups a day just wasn't enough so saw no option but to try green tea. I was sceptical, but had it delivered with my shopping this morning and promptly had my first cup. It was lovely, so I've had a few more. This I can live with!!!

I administered my second injection this morning, no problem, I'm quite proud of myself. I was worried if I'd be able to do it as my fingers are quite swollen and painful today as I am flaring, but I did it. Now all that's left is to hope it helps.

At the weekend my big boy turned 3, I do not know where those 3 years have gone, and how is my baby turning 6 months on Friday. Time just goes too quickly. My family keep me strong and it's for them that I do everything in my power to try and be as well as I can because I do not want them to miss out on things because of me.

Wondering now what the week ahead holds???

Tuesday, 19 January 2016

Over the initial hurdle

So, the injection itself was fine. Unlike previously when I had to inject myself, I managed to do it straight away. No working myself up into a state! Also, in contrast to enbrel which is the drug I used to inject, I couldn't even feel it. Afterwards the site of the injection stung for a short while, but all in all I'm feeling positive.

Next week, I haven't got to go to the hospital to be supervised doing it, I will just be doing it myself at home and I'm actually feeling OK about it.

I'm still going to bed nervous tonight, the dreaded side effects, all I can hear myself saying is ' don't be sick, don't be sick, don't be sick'. Fingers crossed I will wake up in the morning side effect free, and who knows this journey may even take me to one day waking up bright eyed and bushy tailed, symptom free! So I may be dreaming but we can all hope.

I left the hospital today with my support I went in with (mummy and kids - hubby was working), paperwork regarding the medication or as it is also referred to subcutaneous chemotherapy treatment (how scary does that sound? ��), 4 weeks worth of injections and an oversized sharps box. I really am starting to look like a pharmacy with my collection! My 3 year old son was very helpful and carried the sharps box, my poor kids, hospitals and drs are like their second home. On the positive, hopefully they shouldn't have any fears of hospitals!

I will update my journey as it goes, thanks for reading ��.

Today is the day

So, it's taken longer than expected to get to this stage. But today is the day, today I start on methotrexate again. I have taken the decision to administer it weekly via injection rather than take the tablets as it should lessen the side effects on my liver and the sickness!

I haven't felt a stranger combination of feelings that I do today in a long time. I am surprisingly so excited to be starting this as I am in so much pain and just hoping that it will help. But I am so nervous too, never been a fan of needles, but also worried about what side effects can occur. Will I be chucking my guts up tomorrow??? 😖😖😖😖

Watch this space... 

Thursday, 19 November 2015

The Necessary of Two Evils

So, it’s been a long time since I last posted on my blog and I’m hoping it will become a more regular thing again now. Life has been busy and will remain that way now that I am a mum of two. My little boy will be turning 3 in January and my little girl was born at the end of July. They are both so amazing and I could not even start to describe just how much I love them. They have their moments but I would not change them for the world, my little family is now complete. But I find my blog helpful to put my thoughts down on paper and share my journey with others, hopefully helping people realise they are never alone in their struggles.
The last few months have been hard, making sure a toddler isn’t feeling left out with the addition of a sibling. Caring for a new born who unfortunately hasn’t been overly well, she went to special care after birth as she was dusky from below the belly button and there were concerns about her heart. Thankfully all was well.
However since then it has become apparent that she has a cow’s milk protein allergy, it has been a long 16 weeks of adjusting formulas to find one to suit her and it has been a persistent journey with the doctors to ensure I was listened to and taken seriously to get her well. I feel like we are starting to get on track and feel more positive after seeing a dietician this week. Is it my fault she is poorly though? Did I do something wrong while I was pregnant? Is it because my immune system is rubbish? I’m now approaching the time to start weaning her too, which of course will be very exciting but a challenge in itself having to avoid not only milk but wheat, eggs etc.. too. Sorry little one, no rusks or biscotti for you. To be honest I’m more saddened for her that she won’t be able to go to the seaside and have an ice cream or eat chocolate obtained when trick or treating. Fingers crossed that she will grow out of this. My shopping trips are going to become longer, having to check all the ingredients in everything I buy. It’s strange how you are never really aware of how things like this impact your life until it happens.  You all of a sudden become aware of allergies and the constraint they put on a person’s life.
On top of this I have also been potty training my little boy, the first thing I have experienced with him whereby I felt completely out of my depth, but we are getting there and I am pleased to say I can see the light at the end of the tunnel.
Of course my arthritis has been weighing on my shoulders too, progressively getting worse and now that our family is complete choosing the necessary of two evils. Yes, my journey of the drugs begins again. Since the birth of my son and prior to becoming pregnant with my daughter I found gabapentin to be a relatively effective pain relief but since having my daughter I have had to increase my dose drastically and whilst it helps the pain subside slightly, the pain is still very much there along with the stiffness of joints and swelling.
So I had my first rheumatology appointment post birth last week, where we discussed the next steps. Firstly some steroids to try and settle everything down a bit. That in itself was a debate, tablet course which we know is going to lead to weight gain which in turn will put extra stress on my joints. Or steroid injection to which I reacted to previously, going numb all over and burning myself. I chose the injection as it should also work more immediately. Brilliant, no reaction to it this time and it has helped settle things down slightly.
There are new medications available now but I won’t be considered for them until I have tried Methotrexate or something similar again. Therefore, I feel no option but to start back on the disease modifying drugs. First step – Methotrexate!!! Argh!? Is this the right thing to do for not only me but my family too? My husband is reluctant for me to go back on this and concerned, but without at least trying it I won’t be able to try new medications which are in the pipeline. Methotrexate has never been overly effective in managing my arthritis but I’m wondering if with the right painkiller (gabapentin) it may be more effective. Not only my husband, but my mum is also concerned about me restarting the methotrexate, the thing we have to consider is the way it compromises your immune system. It seemed I was constantly ill before and is this going to be the case again? Especially as I am around snotty kids a lot of the time?  Am I going to be well enough to look after the children, however if I don’t do something for my arthritis I will be unable to look after them how I want to anyway; as the day to day things are becoming more difficult. My fingers not working properly, making it hard to prepare a bottle for my little girl or get a snack for my little boy. I will not give in! I will give my children what they need! But, I do need a little help, I feel the need to give in before I drown and feel at the moment methotrexate is my only option. So, I’ve been for my pre methotrexate blood tests and now it’s just a wait on the results. Then hello bi-weekly blood tests again. This is looking like a daunting prospect after this blood test experience. On my own with the two children and my ears go fuzzy and my vision goes fuzzy and yes I’ve fainted – how embarrassing, hoping the children are too young for it to scar them.
I thought that it would be a clear OK to the blood tests and the go ahead to start back on the methotrexate but after a phone call today I found that I need further blood test and a chest x-ray prior to starting the methotrexate, so another wait. And these are my drugs before I even begin the methotrexate, will I rattle when I walk???



Ok, so this has been a bit of an update, rant and yes I know a long post. Who knows what’s on the horizon. Watch this space, as they say. Providing my bloods and chest x-ray come back with the OK, my Methotrexate journey starts again! But my amazing journey as a mum and wife continues too. All the cuddles and kisses and smiles remind me of the importance to keep going.

Despite everything my life is good and I know there are many others which are much less fortunate in many different ways.


My heart goes out to a very brave little girl, daughter of a girl I went to school with. She is currently awaiting a heart transplant, and I just wanted to share her story with you to raise awareness of organ donation and hopefully help to get her, her gift of life! https://www.facebook.com/nhsorgandonor/photos/pb.26728571815.-2207520000.1447944919./10152924163526816/?type=3&theater

Tuesday, 13 May 2014

Mummy and baby 1 - arthritis 0

Sorry yet again for the absence of any blogging. Still can't believe how time consuming a little one can be. More so now that he is into everything and starting to walk. I could do with some extra pairs of eyes and hands.

Still enjoying every single minute of this amazing journey that is motherhood. Very hard work but so worth it, it's amazing see this little baby grow,  he's now a little boy with his own cheeky personality. He will never know just how much he has changed my life and how he has helped me so much with dealing with and managing my arthritis.

I'm feeling sorry for myself today, the pain is the worst it's been for a very long time. I could cry, but instead I've planted a smile across my face for my little man and just got on with it. He's not going to miss out on things because of this horrible disease too.
Mummy and baby 1 - arthritis 0

Just a mention, late for this year but to help this lady, Heather raise awareness of mesothelioma please check out the following link when you get chance Mesothelioma.com/heather/lungleavinday

Thanks x

Thursday, 16 January 2014

Time flies when you are having fun!

So this time last year I had an oversized belly, swollen ankles, larger than normal boobs, all in all, I was pretty fed up and even though I had just less than 2 weeks to go until my due date it felt like I was well overdue. I was so eager to meet my little wriggler that hadn't seemed to have stopped moving for the past 9 months. After so long planning for the pregnancy because of my medication it was hard to believe the journey had nearly reached its conclusion. He eventually arrived on 23rd January, words can not describe how amazing it felt to be a mum.

So this time next week I will be celebrating my little boys first birthday, it's hard to believe he will be one already. It's lovely seeing him grow each day and I feel so blessed to have our little miracle, but it makes me sad too, he's not a baby anymore. I feel like the firsts are running out though, even when I know I have years of him doing new things. The past year has just flown by, I can't believe how quickly it goes. One of his friends (from our baby group) was one today and had a party, it only seems like a few weeks ago that I met my baby group and their little ones. It's lovely to see them all developing though and their individual little personalities coming out.

I have had so much fun on this incredible journey so far, and although my arthritis still sucks,  it makes it much easier to deal with. I have no choice but to keep going for my little man. When I'm playing games with him even though I'm having to push through the pain to do it, his little smile or giggle just makes all the pain worth it.

Don't get me wrong I still have my worse days when I could just curl up in a ball and cry. But, I get myself up, usually with help from my husband,  plant a smile on my face and just do my best. Today was one of those days and with the damp, cold weather these days occur more often. I still hope that a cure could be just around the corner,  I want to be able to play football with my little boy when he is a little older, and whilst I stretch myself all the time that may be a stretch too far. Chasing after my crawling monster can be a challenge on days like today.

Thanks for reading and sorry for the lack of blog posts in the last year, life is very busy with children. But like with everything I will continue to try harder.

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