Next chapter of my arthritis story

And so it all begins again...

It's been a while I know it's seemed like I've been crazy busy. TBH though it may be down to the fact I have actually been feeling quite low. Everything has been quite a struggle due to the PAIN. Yep, you guessed it my treatment failed.

When I last blogged I was starting on methotrexate injections weekly. Unfortunately; however as predicted, it wasnt very successful. So on the plus side it didn't make me feel nauseous and vomit like the tablet form of methotrexate did and I found it easy enough to inject (that is when I was actually able too - downside!) The negative side, I wasn't able to inject every week as, as previously on methotrexate it made me prone to picking up infections. In the 8 weeks I stayed on the methotrexate for I believe i managed to inject about 4 times as you have to miss your injection if you have an infection or are on antibiotics. Well in this short space of time I got so poorly, can't remember picking up so much since last time I was on methotrexate and even then I can't remember it having been this bad. I managed to get a throat infection, chest infection and ear infection in this time as well as just generally feeling pretty shitty.

I'd had enough, I think I'd given it a fair try. I couldn't carry on being this unwell when having to look after my two young children. Especially as it was having no benefit on my pain.

It's been a long process since then and thankfully (after seeing the rheumatology nurse practitioner whom I used to see that has returned after spending time doing research) it was agreed that I could not continue in the state i was in, and yes it was clear the methotrexate had failed but I'd jumped through the hoops necessary to be considered for other treatment.

It was decided I would retry entracept. This anti TNF treatment I tried previously to coming off everything in my attempts to conceive my first. Whilst it benefited me back then I was still taking methotrexate too and just generally feeling too poorly. I believe however that this was down to the methotrexate. It took a lot of explanation and discussion to make rheumatology aware that I'd only stopped the entracept previously to try for my babies and not that it was because it hadn't worked. It was therefore decided that this would be our next try.

I had to wait for it to be ordered and then consequently delivered to me before I could commence treatment. And it turned out that before I could even be prescribed it that I had to have yet a further blood test to check I didn't have TB, not that it was suspected I did. Thankfully that came back clear (yay! I passed a blood test). So then it was ordered. I got my first delivery of the entracept injections Wednesday this week. Stored them straight in my fridge as directed. Then spent the next couple of hours keeping myself busy and distracting myself. I had become very anxious. Not about administering the injection just about starting the treatment again, this time without methotrexate, this time a few years on from previously (now I have two little ones relying on me to function). I came to the conclusion though that I couldn't surely feel much worse than I do currently. My pain is on an all new level and whilst yes I do learn to live with it, I'm finding each day more of a struggle. This is turn is affecting my mental state, some days I could just hide under the duvet all day or spend the whole day crying. Neither really an option with two small kiddies relying on you.

I took the leap and plunged into the next chapter of my arthritis story. Here goes.....

Wednesday 6th July 2016 approximately 3.30pm first dose administered successfully (well eventually). Slight, erm, stumble along the way. You see back when I used to inject the entracept (then enbrel) much like my more recent experience of injecting methotrexate - you push the injection pen right down on your skin and then press the button which triggers the needle to fire and the drug to be administered.

Now the entracept (aka Benepali) unbeknown to me wasn't quite the same. There is no need to press a button as you just press it down onto your skin and the needle is pushed in which triggers the drug all by itself. Ouch! Wasn't expecting this, begun to push the pen onto my skin thinking I'd then have time to pull myself together a bit before pressing the button, when I'm pricked by a needle and my knee jerk reaction was just to pull it away, something must be wrong. It had only slightly broken my skin and the drug hadn't been triggered. I looked at the instructions (yes, this is why you should always read the instructions first), oh there isn't a button to press afterall, its supposed to go straight into my skin as I push the pen into my skin and it will start automatically. Yay, this is a good thing no more a struggling to press the button with my doggy thumbs when they are not wanting to work, but, boo hoo no mental preparation time. It'll take some getting used to, but it'll be fine. It stung more than the methotrexate injection but from memory not as much as the entracept used to. 

I found the next day that it had left me with a nice little bruise but other than that 4 days on (touchwood) no side effects. Obviously I know it's early days but so far so good. Hasn't made a difference to my pain but it's not miracle overnight cure or anything - MUST FACE REALISATION THERE WILL NEVER BE ONE OF THESE! But fingers crossed and thinking positively that in a few weeks maybe I'll start feeling a little better and in the long run hopefully this will be the answer to make me more comfortable and enable me to get a better quality out of  my life. Not only for my sake but my husband's, children's and the rest of my family and friends. Apologies go out to you as you haven't been getting the best of me, especially recently, I haven't been the happiest due to the constant battle with pain and in turn my depression. I've probably been more distant, and not overly ' in the room ' , I quite often go away from our conversations or meet ups not convinced I've actually been there and/or contributed anything. Please know I always try my best and you all mean so much to me, without your continued support I would be utterly lost. 

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???

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... 

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

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

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.