Sadly, I’ve been going through a rough time this past week or so. I’ve been experiencing terrible abdominal pain and some awful bathroom visits. All the while, going to work, doing my Brownies leadership and persurviering with my snowboarding.
You’ll be glad, I managed it all whilst being unwell.
But here I am sat, attempting to complete NHBPM – albeit a week behind – and I’m finding it hard to concertrate. I spent last night yelling and screaming and crying at my boyfriend as we faught. Why? Because I am in constant low levelling pain and uncomfortable as fuck. No matter how much I try, I am in pain. Always. I thought I could or would be able to ride it out and just get over it in time. Alas, I’ve come to the end of my tether and I’m pretty fed up; the fight was just the reason for everything to come to the surface, I bottled it all up the last couple weeks and I’m so tired of fighting with my own body for some sort of comfortable feeling to happen, I just snapped.
I’ve been contemplating alot of things today whilst I was at home alone. Like, how can I still be allowed to continue Humira under the NICE guidelines? I come to my 12 month limit in two weeks and I’ve no active disease. I’m in remission. I do not want to stay on a medication that is only trialed for 12 month cycle and has made my body expand and me hurt more. I might not have an inflamed colon anymore but I feel more miserable than ever before. And it is Crohn’s related; I have a job, I have a life, a loving bf and a good family. I’m not exactly in despair but I feel awful. I want to avoid my depression coming again. I want off Humira.
Is this a possibility? I hope so. Is the 5th of February too far away for me to see my GI? HECK YES. I intend to remedy that this week. I want to get back into the game, I want to feel better, every part of me, I want to feel better.
I’m taking this afternoon to talk you about medication. This was the morning regiment of my tablets whilst in hospital last September. There are (from l-r) two calcium (Adcal), 40 mg of Prednisolone and three coated Pentasa. That was pretty standard for new Crohn’s diagnosis. The Pentasa would be repeated again during the day. It would take me a while to get used to all these new medications, of just taking them to begin with, then with what they would do, or in my case, fail to do. The second photo is my regiment last November, once I was finally out of hospital for the last […]
There has to be 9 empty injections in this medical waste box. That is the last four months of Humira medication. They sit in my fridge, reminding me of the magnitude of my situation. It is flowing through my body, in my blood, controlling my symptoms for as long as possible until the next dose is due. I really do thank my lucky stars for how brilliant this works for me.
Last night was my mom’s first chance to do an unsupervised Humira injection. We did a test run on Wednesday with the dummy pen and I was more than a little controlling. I wanted it to be done right, to maybe do it myself, but I have to let her do it for the time being. I was a little nervous; understandbke right? What if the injection from two weeks ago – the one that was so effortless and pain free – was a fluke? Nothing but beginners luck? I certainly felt that way when I first started ny my […]
Heard of the phrase “a moment on the lips, forever on the hips”? I choose to add; “pushing through the guts” too and it is bloody true for me right now. I had pizza for dinner last night. It was delicious, dont get me wrong and nothing out of the ordinary. But it most definitely did not feel that way at 5.30 in the morning. That gut wrenching pain that spreads through my left lower quadrant doubling me up in pain. That bring me to begin cursing my stupid hunger the night before and whatever possessed me to eat so […]
This was today, again. Me and mom went along to the Endoscopy suite at Good Hope for my Humira appointment with my IBD nurse this afternoon. She got trained by my nurse, Ruth, and had to give me my shot. And you know what? No pain. After a try out with the dummy pen, she was encouraged to do my real one. I got abit panicked and starting freaking out a little, but next thing you know, the plunger goes down, the drug is administered and it’s all over in 10 short seconds. It was nothing. I’d thought it was […]
So yesterday was Humira Thursday. I had an appointment with my IBD nurse to get me fixed up with this injection, phew! It was pretty uneventful. I had tears – as usual now with the Big H, the bastard – and she did my injection for me. Pushed down on the ‘trigger’ and gave me my Crohn’s medication. Thank goodness! I felt alot better afterwards. Feels weird to say it, but it does really help. I need to remember that feeling for the next 12 days until my next one. I’m not sure if what I am going through is […]
I spend the afternoon at Good Hope in the Gastro clinic. Outcomes: – Iron Infusion in the coming weeks. – Humira injection next Thursday can be done with my IBD nurse in the endoscopy suite at the hospital. – Colonoscopy is due in 2 months time. Thoughts: It is a weight of my mind to sort my Humira out. I was very upset about my stupid stupid self for not being able to inject myself as effectively like I once could. This is the next option for me; getting someone to give it to me. First the nurse at the […]
I am at an en passe. I hate that needle with a passion. Yesterday, I spent the afternoon giving blood at the hospital for my upcoming clinic appointment with my GI. That was simple. Not even the sharp scratch I usual feel, nothing. Took two vials of my blood and sent on my way. Today, Humira time! I’ve done that injection at home for the past 4 months, twice a month. That’s, what, 8 injections? Plus, the half dozen I did at the hospital before hand. I am used to it. But, as you might be aware, it hasn’t been […]
I am scared. Alot of the time. I was sat on my bed earlier on, lying next to my boyfriend, trying to find a moment to just relax and be in the moment. It is so hard to just be in the moment. And this isn’t to do him a disservice, but it is so terribly difficult of late to relax and just be happy. Sure, I smile, I laugh, I even giggle, but I worry. A tremendous amount. Here is a snippet from the monologue inside my head: “Right. Work. Work. What if I need the bathroom at work? […]
I am going to go out on a limb here and say the following: I am pretty sure that this is not just a cold anymore. It has been 5 weeks and it not going anywhere. I also pretty certain that it has gotten worse in the last couple days. It started last last month with just the sniffles. I took my Humira as normal and thought nothing of it. Mid to late April, it developed a cough with it too. Began to worry about that being mixed in with my Humira. It cleared for a day or two, took […]
It feels like forever since my last injection of Humira, but it was only two weeks ago. Alot has happened in two weeks… So, I almost forgot the date and day and that it was indeed time for some more lovely Anti TNF medication. If you’ve been following me through the Humira experience, you’ll know that the last couple of cycles have been abit rough to say the least. I’ve been panicking about my injections, worrying about not lasting on them, pushing myself too far too fast. Today, for the first time, in many many months, I feel good about […]
I sound full of excitement and hope, from that title, don’t I? Well, it was difficult today. My insanity prevailed more than my logic. My logic dictates that it is a 10 second injection for 14 days of greatness. What does my insanity think? Needle. Needle! NEEDLE! Painful painful prick of a needle! I sat with the pen posed on my skin for what felt like an eternity. I took it off. Gave myself a pep talk – Seriously? You can’t it it NOW? What is wrong with you? You’ll flare up without it. You’ll have horribly painful days if […]
Today is the final day of my Humira cycle. And it is a good day. Its sunny! I feel rather much alright. I feel like fighting today. But. There is a niggly feeling in the back of my mind. That same voice that wants me to say ‘fuck it, just do it’ wants me to just give up. It wants it to be Thursday morning today. WHY?! I feel okay! I’m not desperate for my medication like before! I can totally do my shift at work today without problem! Why does she decide now is sensible time to pipe up […]
I know that is it unrealistic to have expectations when it comes to my Crohns, but I can’t help it sometimes. When things were bad, I just wanted to be better. I wanted my new medication to work and I wanted to get back to my normal life. And in a way, I am back, and I am as normal as I’ll ever be again. But starting Humira back in December was a scary affair. I was very aware that I could not spend the rest of my days on steroids – and I really didn’t want to have to […]
Now, I am not a completely stupid girl, I know that the medication I am on helps me; helps relieve the crohns symptoms, and let’s me go out in to the world and kick ass every day. I know from personal experience that everything else has failed – in one way or another – and this is my option at the moment. And what is a couple hundred £££ worth of injection if not brilliant for giving me back my life? So what, I have to actually stick a needle in my thigh bi- weekly? So what, if it takes two […]
So, today is the final day of the current Humira cycle. Yes, it ist just gone midnight on a Wednesday, but I for some reason am wide awake. This cycle has felt completely different. I’ve had so many days of feeling so damn good, it is slightly scary. I’m used to my body starting to flag on Day 9 and start seriously running on fumes by Day 12. This time around? Nothing like that. I don’t know if it’s because I’ve been very open and honest about the fact that I have very bad days and very good days – […]
Tomorrow is my Humira injection. All of this week has been building towards this date. Yet again. The further I get ‘into’ this ‘disease’, the more time I spend on this medication, the better I become at listening to my body; the more I know how much things follow a pattern. Today was particularly hard. It is Day 13 of the cycle, possibly the worst day of all my ‘bad days’ on adalimumab. I can usually go without any pain for 9 days on my injections. As soon as we hit the fatal ‘second Saturday’ I feel the energy begin to fade […]
So, twelve days ago – January 19th to be precise – I gave myself my second home injection of Humira. The first one since finding out I was in a sort of ‘remission’. I air quote this because the term and understanding of ‘remission’ is subjective and very unclear. It’s variety makes it difficult to form consensus, but I digress. Every day since then I have woken without any pain, without a fever, without much tiredness and without the fear of a set back. Today, no such luck. Belly pain. Frequent visits to the bathroom. Unable to find anything appealing […]
Today has been a rough day. Nothing major has happened, just lots of small things that have accumulated into something.. bigger. Had trouble taking my medication today – only my iron tablet – couldn’t swallow it and almost choked. Am home alone now until I go back to work and it was scary. My glasses are irritating my nose still, so back to my old pair. Found lots of hair in my brush today, and as pathetic as it sounds this part of my day made feel the worse, had a little weep. The physical parts of my disease have […]