So it’s been a while since I’ve done a “Sunday Series” and to be honest I wrote a bulk of this post – the raw & angry section on Friday night, in tears and on my phone while everyone else was asleep … But I chose not to hit post.
I prayed about it instead, gosh I was cross at God that night, He copped an earful from me… I feel like He is ok with that. I kept getting the feeling that every single damn thing we are hit with in life is a lesson, a blessing and those hard times are there to teach us something, even if it is just the story to tell – to help someone else. So who knows who this will help, maybe it’ll just help me to get it off my chest… But let’s do this…
Right now I am sitting in my room on a Saturday night, listening to my baby cry for me. He is ok, his Daddy has him – but that baby boy wants me and it’s breaking my heart. He wants to be fed back to sleep. He doesn’t understand why he can’t have “boobie” like he usually does… Twice last night he woke and far out was he angry that I wasn’t the one comforting him. I laid in bed, tears stinging my eyes as Trent cuddled him out in the lounge room. But I think I am getting ahead of myself, here’s what I wrote in the late hours of Friday night, while my face felt hot and had a constant pouring of tears…
Today (Friday) was hard, this Friday really sucked, I hate having a bad Friday – it’s like it jinxes the weekend.
I had my specialist appointment today where I knew we would be discussing “level 2 treatment” (for my IBD – if you would like to read about that you can CLICK HERE)
I failed the safest and most basic treatment, after starting my first lot of medication after my scopes at the beginning of July, 2-3 weeks later I started to struggle to breathe – that was a severe reaction. It was quiet traumatic for me, it was awful gasping for breath and nothing could be done except to let my body come off the medication. It took about 2 weeks and then I was fine, I could breath again normally. Anyway, the next treatment option is pretty hardcore, so intense that it’s 1 tablet per week. And folic acid tablets every other day of the week.
The shit part of this, (besides the IBD) is that I cannot have any more children in the near future. If I want to have anymore babies I have to be off this drug for 6 months. And sadly I have to cut short my breastfeeding with Tommy and that breaks my heart because I know he isn’t ready. He is ready in the sense that we smashed our goal of 1 year, on Friday funnily enough he was the exact same age Lucy was when I last fed her – 20 months and 3 days. But with Tommy I was hoping to get to 2years. Back when I was pregnant with him and diagnosed with IBD we thought I may not be able to feed at all I was so sick. But we did it, I’m proud of what we have achieved but I know he still needs me. And I still need that tiny shred of babyhood. Trent & I have talked about the reality of having no more kids for awhile. He is very happy with 2, I however would love like 10 – or at least 1 more, but I see where he is coming from. When I’m pregnant I get dreadfully ill and our world stops, I don’t want to put us through that again. I basically become a useless human and I can barely care for myself, let alone 2 small children – so I know having no more kids is the sensible choice. But hearing my doctor say that I cannot under any circumstances fall pregnant on this tablet was very shocking, because while a baby isn’t being planned if it happened it would be wonderful (& incredibly surprising). But now it’s very final. Like I know we won’t have another but this just makes it very certain for now. (I say for now, but that’s just my Mumma heart staying hopeful. The reality is – it won’t happen.)
I just wish I had that finished feeling so many women have, like I have friends that are 110% done with having babies, but I am not… But I know I have to be…
So letting go of that last moment of babyhood is rough, especially when it is happening so abruptly. My heart is broken. I hate this disease – I hate it so much. It’s stolen so much joy from my life. My pregnancy with Tommy was all about this stupid illness, I couldn’t enjoy life or being pregnant for my final time, I just was scared the entire time and now it’s cutting short our breastfeeding journey.
It’s fucked honestly.
Even doing this intense drug won’t cure this disease, it just hopefully puts it into remission and if everything goes to plan we can reassess in 1-2 years, my doctor said some people chose to come off of the treatment at that point but a high percentage relapse & she said judging by the severity of my disease, if we can manage it and then I chose to stop the drug there is a super high chance I would become ill again. But we will cross that bridge when we get there, we have to hope it works first or it’s onto the next medicine…
I had a whinge about this on my insta stories on Friday and I had a mixed response of messages. Some people were just beautiful & saying they are sorry & just being kind. Others were sensibly saying my health is most important and I’ve done well feeding Tommy, I should wean and start the treatment and others were saying to keep feeding him and put the treatment off. I feel those last group of people don’t actually understand my problem.
Trust me I asked my specialist this, she said very bluntly “you can wait, but if you do and I can confidently predict you are heading towards having a major flare up and how extensive your disease is, you’ll get so sick that we will be at a loss for treatment options”. Do you know what that then leaves us the only option for? Surgery. And my whole bowel is sick, not just parts, so if 1 part goes bad the whole thing is.
So to avoid surgery & options I don’t even want to consider yet, I know I need to try this medicine. Trent is 110% supportive of this, he told me it’s not even a question – we are going to wean Tommy and start the treatment. That’s why he is out there right now with one very cranky 20 month old.
So that is where I am at. Being forced to stop breastfeeding, something I love and I find is so special to me. With LuLu I weaned her at exactly the same age Tommy is now, but she was ready – she didn’t fuss or care. Tommy though is a Mumma’s boy, he is so attached to me – like LuLu is to Trent… Every baby is different and I know this is harder on him than it was her, and I think that is what upsets me the most. So for now, he only gets a feed at bedtime and that will phased out very shortly and I plan to start the medication ASAP.
In an ideal world I would opt out of the medication, drink a herbal tea or some sort of magic broth and be cured – but it’s not going to happen. This disease is incurable, only manageable and it doesn’t matter what magic diet you are on, it won’t change the fact my gut is trying to kill itself. My scopes revealed my entire large intestine has highly moderate active disease, the entire thing – like it’s every where. That is way, way worse than I ever thought, like the entire stupid thing is sick! Honestly for the past 2 years since I was diagnosed I’ve been telling myself I am actually “not that sick” – that it all could be just in my head… It was a bit of a smack in the face to be told “no you are sick, you need to do something about this or it will get very bad”.
I hate going to doctors appointments, I walk out so overwhelmed and confused. Being sick is dreadful enough, having to remember every result, medication and test is worse. Especially when your brain is foggy 98% of the time… I’m flat out remembering milk let alone everything else! I am just hopeless at being sick, I hate rest and I forget everything! During that appointment my recent blood tests also confirmed I have markers for arthritis – so I have to at some point get that further investigated. But the drug I’m about to take could help with my bone/joint pain…
This drug that I am about to possibly take is scaring the absolute life out of me though, like it is hardcore. Every time I read about it, something new pops up and makes me feel physically sick at how intense it is. It’s used (in larger doses) for chemo. So yeah, there is a whole host of side effects that can come along with that and then we have to play the game of is the side effect worth tolerating so I am “better”. I’m just praying I can stay on the minimum dose and manage my disease and have zero side effects. That is the best case scenario.
So yeah that’s my thoughts for now… Thank you for understanding why this post is all over the place and Lord only knows if you understood my ramblings. But maybe this was meant to be written, just to keep my own sanity or maybe you are dealing with something similar and that’s why you stumbled upon this mess of words and emotions.
I get it – this disease is dreadful (I have a few other colourful words for it, but I’ve already sworn twice in this post…) and I’m sorry if what I’ve written here hits home, if you can relate or you are dealing with or have dealt with something similar.
Feel free to reach out to me on my social media if you wish. Praying for you and for me!
And friends, if you are dealing with a hard time in your life health related or not – I am praying for you. Sometimes we cannot see why we are struggling in certain seasons, we can’t see the big picture of why and our life – but He can. Every little thing in our life, the good, the bad, the heartbreak and the regret – it’s all for a reason. One day you understand why, but gosh I know what it’s like to be in the trenches of it, wading through so many emotions with your hands in the air going “Why? Why this? Why me? Aren’t you meant to love me?” I get it. I’m there, I’ve been mad at Him and now I’m just heartbroken & feeling very low… I do not have time to be sick, my life is so full and rich in excitement – we have so much to do and enjoy and I can’t. I want to be living my best life and right now I feel like I just survive most days, I collapse into bed sore & worn out. I do know I have to learn to stop over committing so much, the other weekend I had to pull out of some fundraising work I was doing and I hated it, letting people down was awful. But I had to put me first, I couldn’t do that, do what I needed to at home and feel ok. I was so weak, but I am learning to realise I can’t “do it all”.
97.5% of the time I pile on the makeup, plaster on the smile and I’m good to go. Even when it hurts to just walk – I don’t care – I am pushing this illness to the back of my mind – ignoring it. Maybe you get that, maybe something else is hurting you and you just push it down and ignore it. But eventually we have to face it, we have to deal with it – even when it’s scary & confronting or unknown… If we push it aside & down forever it just grows & becomes worse, than we are dealing with an even worse mess! This can be a health problem, anger, hurt – anything. They are all so similar. No matter the problem, everything needs to be eventually dealt with. And when we have to do that, it’s so wonderful to be surrounded by people who love you and support you, but sometimes you are alone or no one else gets it. If you have no one else, He is there. He put it before you, He will bring you through it. I keep telling myself that, our Lord gave me this challenge (and I am not impressed by it nor do I get why…) but I just have to trust His timing, His plan and have faith that He will get me through it. Scary drugs and all… I’m thankful that it’s this and nothing worse, but far out I just wish it was something relatively basic, like I don’t know a cold… But it is what it is, and I just have to trust that He already knows the outcome, what happens is His plan.
Still pissed about it, but I have faith, I’ll be ok – just not right at this very moment…
Thanks for reading (especially if you made it all the way to the end.) Your support means more than you realise.
If you would like to donate towards research for a cure for IBD and also help to raise awareness please CLICK HERE…
A few verses & quotes that have helped me recently…
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
I love you, Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold. Psalm 18:1-2
The only way God can show us He is in control, is to put us in situations we cannot control.
He heals the brokenhearted and binds up their wounds. Psalm 147:3
So do not fear, for I am with you: do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10
“But I will restore you to health and heal your wounds” declares the Lord. Jeremiah 30:17
When I am afraid, I put my trust in you. Psalm 56:3
Jesus replied, “you do not realise now what I am doing, but later you will understand.” John 13:7
God will redeem your pain and replace it with purpose. Priscilla Shirer
When hard pressed, I cried to the Lord; he brought me into a spacious place. Psalm 118:5
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. Romans 5:3-4
Dear brothers and sisters. when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. James 1:2-4
We also pray that you will be strengthened with all his glorious power so you will all the endurance and patience you need. May you be filled with joy. Colossians 1:11
So be strong and courageous! Do not be afraid and do not panic before them. For the Lord your God will personally go ahead of you. He will neither fail or abandon you. Deuteronomy 31:6
Dear friends, don’t be surprised at the fiery ordeal that has come to test you, as if something strange were happening to you. 1 Peter 4:12
I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. John 16:33
Your illness doesn’t define you, your strength and courage does.