A Day In The Life – Starting A New Biologic Medication

Yesterday I started my new biologic medication.  It is called Stelara (Ustekinimab) and we are hoping it will sort out my Arthritis flare and also keep my Crohns Disease under control.

I have had to wait for a few weeks from my rheumatologist deciding this was the next step to take.  First she had to apply for the treatment to be funded.  It is a very expensive treatment and they have to ensure I meet the criteria for it to be worth prescribing it,  Then I had to wait for a spot on the Day Case Unit as you have to take your first dose after being trained to do the injection and then be observed for signs of reaction.

I have decided to do this post in a ‘Day Of The Life’ style so you can see how the day went and what happened with the appointment, as well as seeing how I spend the day around it.

Thursday

9.30am – Ste comes and wakes me up.  I don’t normally stay in bed till this time but with the fatigue I am experiencing at the moment I am often sleeping in.  It often doesn’t help, I still feel just as tired when I wake up.  I take my medication and then go and grab a cup of tea.  I have also been struggling with one of my headaches since yesterday afternoon and am in quite a bit of pain, hoping these painkillers will help.

9.50am – I get dressed, choosing something comfy to wear at the hospital and that isn’t too warm as they are always so hot!  I put on a bit of make-up but due to waking up late there isn’t much time for a lot and I just shove my hair up so it is out the way.  Brush my teeth and I am ready.

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Ready to go

10.20am – I toast a couple of hot cross buns and put some jam on but can’t eat them all.  My headaches are caused by my high blood pressure and stress and I think I am definitely nervous now about this new drug.  What if I am allergic to it?  What if it makes me feel really poorly like Humira did?  What if it doesn’t work?  These headaches are extremely painful (coming from someone with an exceptionally high pain threshold) and they make me sick.

10.30am Time to set off.  Parking can be a nightmare so have to leave in pletny of time.  Ste is coming with me even though he isn’t feeling great.  It is so good to have him there for support, I know it is helping me feel calmer.

11.30pm Parking was a total nightmare but I have managed to make it just in time.  Grab a chocomilk in the waiting room

11.45pm The nurse takes me into a cubicle and I have a bed, yes! Time to fill in endless paperwork, have to list all my diagnosis’s and medication (of which I realise I forgot at least three later  on). BP and pulse is done which are a little high but that’s normal for me.

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Waiting time

12pm A lovely nurse comes round and I get a sandwich, yoghurt and some biscuits. Ste is already snoozing but gets a sandwich too!

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12.15pm My rheumatologist comes in to check the blood results I had done a couple of days ago. My white cells are slightly high but they generally are. You aren’t allowed to take biologics when poorly or suffering an infection so all that has to be checked out. She asks how I’m doing with reducing my steroids and we have a general chat, she really is so lovely!

1pm The doctor is happy and has asked pharmacy to get the injection ready. The nurses call and ask that they take it straight out the fridge as it needs to be out for half an hour before injecting so it can come up to room temperature.

1.40pm It’s here. The nurse gets me to wash my hands and then I sterilise the area I will inject. At home I do my injection after a bath so I don’t need to do this step as the alcohol in the wipe can cause it to sting. She shows me the pen and I inject into my stomach. It doesn’t hurt at all and once I have fully pushed the plunger in it snaps back into itself so the needle can’t poke anyone! Needle goes into the sharps bin and I have to wipe a small amount of blood away and it’s done.

2.20pm I’m issued blood forms (2 weeks time, another 2 weeks after then every month) and an appointment to come back in a month to collect my next injection. The nurse is happy that I’m competent with self injectjng so I will take it home with me and do it there. The site has come up a little red which is totally normal. I also get issued some piriton tablets to take incase if a delayed reaction and I’m free to go.

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A little redness at injection site is normal

3.30pm We get home and I put in some washing and plan tea. I have some chicken that needs using so cook myself Chicken Coconut Curry Rice for tonight and also a Chicken & Smoked Sausage Cajun Pasta dish for tomorrow night to take to Ste’s mom’s house. Check out the recipe for the rice dish here

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7pm Me and Ste just chill after tea and watch some TV.

7.40pm I sign in ready for The IBD & Ostomy Support Show and have a chat with my co hosts, Rachel, Louise and Steve. Stephie is taking a break at the moment due to her health, I miss her face! Tonight we are talking about how our IBD & ostomies affect our friends and family.

Check out tonight’s show here

9.15pm The show ran over a bit as we were busy chatting but it was really good. There were lots of people on the live chat tonight asking questions and giving their opinions which is fantastic. I love the interactive element of the show. I got a little emotional tonight. Louise was talking about her ex relationship and some of the experiences she had bought some bad memories back for me. I’m so grateful to have met these wonderful people though and to call them friends. Both Steve and Rachel message me after the show to check I am ok.

9.30pm After emptying my bag I get into bed and do my night time meds. Then it’s snuggles with Ste and I read for a bit before switching off and getting to sleep. Night night!

Hope this has helped some of you understand what happens when you start a new drug. I have been on a few biologics now and am happy to answer questions and discuss with anyone the different options and what happens should you want to message me. I am not a medical professional but can offer advice from patient perspective and hopefully give support to others going through the same things.

NatalieThe Spoonie Mummy

What Is Body Confidence?

I was in a relationship for years with a man who I believe may have narcissistic tendancies. A man who emotionally abused me. First, came the love bombing. The constant adoration, the you are so amazing and look, so am I taking you on expensive holidays and dates (which to be honest, are not really within our budget but later on I will blame you for us being in debt anyway). The butter wouldn’t melt, tell me your deepest, darkest worries so further down the line I can rip you apart using the things I know make you feel most tormented and insecure. I was never beautiful, never pretty, never even looked nice. If I wore make up it wasn’t because he knew how much I love and enjoy it, it was…well who have you been seeing while I’m at work dolled up like that? I dropped heaps of weight off an already skinny frame but he wasn’t worried, it’s your own fault, what have you eaten (Crohn’s flares by the way, are NOT triggered by anything you do to yourself but by an auto immune disease which ravages from your mouth right through your digestive tract to your anus).

Fast forward to now. It’s almost two years since I broke free of that relationship. Life has changed considerably, and the same man continues to hurt me, now using our children against me, but that’s a story for another time.

I’m with someone new. We have actually been dating for over a year now and he’s the most amazing and gorgeous human I have ever met. You could throw me David Beckham and Ian Somerhalder and I would say thanks but no thanks – I have met my soulmate.

Onto the body confidence thing, you can imagine, spending pretty much my entire twenties with a man who once told our children that ‘Mummy looks better than she did on our first date’ when I was going for a meal with his Mum and Sister (apparently this was supposed to be a compliment) it has been pretty low.

My body has taken a battering over the years from my various ailments. I have numerous scars, an ileostomy bag, my elbows don’t straighten, my face is swollen from Pred (steroids) and my bones are now disintegrating inside me (luckily pretty slowly for the amount of steroids I’ve been on and the amount of time I’ve had arthritis – small victories hey?!).

Reaching 30, many women have an epiphany don’t they, it’s supposed to be the years you come into your own and free yourself from the doubts that overshadow you in your twenties, be it your appearance, your career, your friendships. I spent my 30th birthday in a hospital bed, awaiting a central line being fitted, which then got cancelled as I was told I needed an ileostomy. Happy birthday to me! This was something that needed time to adjust to and gain confidence in in itself.

But I’m pleased to say I’m now there. I’ve accepted and am proud of my ileostomy, as well as my numerous scars. Yeah I’ve a bit of a mum tum which I would like to tone up a bit but I’ve had two babies, abdominal surgery three times and I love food too much, so there! A charity called Purple Wings (check out their Facebook page here) helped me no end in my road to accepting and gaining confidence following my ostomy surgery and I can’t thank Lauren enough for the tireless work she does.

I’ve also got a man who compliments me. I know it’s supposed to be all about how you see yourself, but when you see yourself through someone else’s eyes, that can really help shape the way you feel. And when that person is someone you love and respect, and they say these things, you may start to believe them. My man doesn’t use just generic compliments either. Some days I just look beautiful or pretty. Some days he tells me he likes the way I’ve done my hair. Some days he likes what I’m wearing, he notices when I wear something new (and not just to point out the money I’ve spent on myself), he tells me when he thinks it suits me. Some days I smell nice. It means it seems more real, more honest and I believe him. I value his opinions as I want to look pretty and be sexy in his eyes. I want to appear attractive to him. That’s all part of being in a relationship isn’t it, you fancy each other? I don’t want to lose that spark of lust with time like so many do. Yes we are more comfortable with one another, I might not shave my legs as often as I used to and I will burp my bag (although I still try and do it only when he is asleep but thanks to my confessions on here he now knows the smell isn’t the dog) but I want him to want me still, just like he did at the start.

So I’m now 31 and a half and I feel like I’m finally starting to understand what people mean about being in your thirties and the body confidence that comes with it. It’s not all about the man either, but that’s helped. My body has been through a battle, every scar depicts a different story, be it my hip replacement, my c-sections or the chicken pox scar I itched right in the middle of my forehead when I was four. My stuck-bent elbows and swollen knees show a fight I’ve been in pretty much since being born. But I’m still here, I’m happy and as healthy as can be, I’m looking forward to the next adventures and what life has in store for me and my family. What will I achieve sat pouring over and picking fault with every photo of myself, trying to starve myself and feeling miserable to lose that bit of a mummy tummy. These faults are only in my own head and aren’t even noticed by my loved ones. I think it says more about someone else if they are willing to judge me based on my hamster pred cheeks or because I need to use a walking stick sometimes.

I, instead, am choosing to enjoy life and all that comes with it, and will do it all with my head held high and with all the 30 something year old sass I can muster, even on a no makeup and comfies day like today!

 

Bucket List

My mental health has definitely taken a downward turn the last couple of weeks. I’ve been struggling with fatigue and insomnia (not the best combination), sore joints and lots of personal things.

Recognising you are in a downward spiral can be helpful but it’s not necessarily as easy as that to start feeling better. I could feel the hole I was in but couldn’t see a way out to starting to feel like myself again. It’s literally like you are sinking and can’t do anything about it apart from hang on and hope everything starts to pick up.

Slowly I’m starting to feel a little better. Yesterday was a slightly brighter day and I am taking that positive and trying to move forward with it. I did go to see my GP last week and she has put my antidepressants up, but it could take a few weeks for me to see the effect of that. Talking to good friends and with Ste has helped me no end this past few days. I feel so lucky I have people I can turn to and trust with my feelings. I often go quiet when I am not doing well, but talking things through really does help. Getting advice, other people’s opinion on a situation or just support and sympathy can be immensely helpful.

And so to last night, me sat on the sofa with a glass of wine watching Katy Perry at Glastonbury. I remembered when me and a friend said we would get to Glastonbury one year and feel a little sad we never have. After the last few weeks and indeed, years I’ve had I decided that I needed to start doing some of these things I’ve always wanted to do. So I started my bucket list. I think it will be something I continue to add to but I think this is a good start and gives me some goals to focus on in the short and long term.

1 – GO TO A FESTIVAL. It doesn’t necessarily have to be Glastonbury, maybe the Isle Of Wight or V. My main worry has always been hygiene and now with a stoma that could be even harder but I think for one weekend I could cope and fingers crossed Stanley would behave!

2 – PLACES TO VISIT – Paris, Rome, Venice, New York (New York Public Library, Botanical Gardens), Pompeii, Northern Lights, Hawaii, Palais De Versailles, National Library of the Girolamini in Naples

3 – SEE COLDPLAY LIVE

4 – GO TO THE LAST NIGHT AT THE PROMS

5 – GRADUATE

6 – ‘PERFECT’ WEDDING – Not necessarily the perfect ceremony but a perfect day just about the two of you

7 – KISS IN THE POURING RAIN – Too many films watched!  A la Four Weddings and a Funeral, Pearl Harbour…

8 – CONTINUE WITH BLOGGING/THE SHOW – Keep trying to positively help, encourage and inspire others

9 – HELP THE BOYS SEE AS MANY PLACES AND HAVE AS MANY EXPERIENCES AS POSSIBLE

10 – OWN A PAIR OF MANOLO BLAHNIK SHOES – Yes I am a HUGE SATC fan!

11 – SEE WEST SIDE STORY ON STAGE – Please, please, please bring it to the West End!

12 – GO PUNTING IN CAMBRIDGE WITH KIRSTY – We planned to once and never did it but really still want to go

13 – GO HORSERIDING – Haven’t been since I was younger

14 – GET A BEAUTIFUL TEAPOT AND TEACUPS/SAUCERS ET AND TRY DIFFERENT TEAS

15 – GET THE TATTOOS I WANT – One around stoma, one for the boys on my back and one on my foot

16 – OWN LOTS OF PETS – Chickens, dogs, rabbits, guinea pigs, tortoises and I would like a pig

17 – LEARN SIGN LANGUAGE

18 – LEARN FRENCH

19 – SLEEP UNDER THE STARS

20 – WATCH A SUNRISE AND A SUNSET WITH STE

21 – GET SOME SAVINGS BEHIND ME

22 – WRITE A BOOK

23 – DO A GIRAFFE EXPERIENCE AT A ZOO

So that’s what I have come up with for now and I will try and update you as and when I complete things.  Do you have a bucket list?  Let me know in the comments below what is on yours or maybe if this inspires you to write one!

And remember always, when you feel like you are sinking the best thing to do is to talk to someone.  It’s a hard step but really the best way to start feeling brighter.  My inbox is open, as always, for anyone needing a chat.

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Leo and Riley’s Sunday Night Takeover

Well, I told you Leo had some exciting news to share with you and here it is!

Last year Leo and Riley completed a 10K walk in London for CCUK. I was so proud of them and the attitude they took to fundraising for a charity.

Leo really wanted to do something this year and picked out the two charities he wanted to help himself – the Sick But Invisible campaign and the Purple Wings Charity. He is an avid reader so when I suggested a reading challenge he jumped at the chance!

We decided on a target of reading 30 books (of at least 100 pages each) before he finishes school for Summer on July 26th 2017. We are using crowd funding on Just Giving to raise the money so we can split it equally between his two chosen charities. He has a target of £200 but would love to smash this and would appreciate all sponsors, big and small.

We also require your help in another way! We will be making use of the local library but if anyone has any books they would like to donate or lend him for him to complete his challenge we would love to hear from you! Any donated books we will pass onto the Children’s Hospital after Leo has completed his challenge in the spirit of ‘paying it forward’. Please message me if you are able to help with this!

The link to sponsor him is below. As I said, he will appreciate every single one as a form of encouragement to complete his challenge. I will keep you regularly updated on his progress and his fundraising efforts. Thankyou all in advance!

💜

https://www.justgiving.com/crowdfunding/leogardner

Not Every Disability Is Visible

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There has been a big push for these signs to be displayed on all disabled toilets recently but it sadly appears not everywhere has caught up and awareness, even amongst the disabled community is lacking.

People with Crohns and Ulcerative Colitis often need to make multiple bathroom trips a day. They suffer severe diarrhoea episodes and urgency issues which often lead to humiliating accidents. Some, like me, have ileostomy or colostomy bags. These require space and time to empty and clean. If your bag is leaking you may need to change the whole thing as well as your clothes.

You cannot tell from looking at a person with these things what they have wrong. Invisible illnesses are just that – invisible to the outside world – but they are no less severe or life changing just because you can’t see them and how they affect the person suffering from them.

I also feel that age is an issue and most of the issues I have experienced are with older people/the elderly. Some of them feel that just because they are old qualifies them to be using disabled facilities, even if they are physically well. Social media is a great platform for raising awareness but unfortunately the older generation tend to miss out on alot of this as many of them aren’t actively online.

Being questioned, tutted and glared at for using the disabled toilets is one of the most humiliating things I’ve gone through, particularly since my ileostomy operation. I’ve had rheumatoid arthritis since before I started using a toilet and have used disabled toilets for the extra support I need getting on and off the toilet and as it is higher. I’m not ashamed of my bag, certainly not now, but in the early days when I was still getting used to it and how my body had changed, the thought of having to ‘prove’ why I was using the disabled bathroom would fill me dread. Would they react with disgust? Would they make me show them my bag to prove it? My confidence with my bag has greatly increased over the months but I know many people continue to struggle with this and the thought that they need to then deal with this added pressure when using public toilets is saddening.

No one should ever need to feel this way and it’s why the campaign to get these signs on all public toilets is so important, aswell as increasing the awareness surrounding Invisible illnesses in general!

Would love to see where you have spotted these signs if you have. Share a photo in the comments – I still haven’t seen one unfortunately although they are supposed to be rolling out country wide!

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One Hull of a Dad