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