Flower gleam and glow
Let your power shine
Make the clock reverse, bring back what once was mine
Heal what has been hurt, change the fate’s design
Save what has been lost, bring back what once was mine
What once was mine
Tangled. The perfect Disney film to watch. Not seen it? It’s a must. Based on the story of Rapunzel. Mother Gothel keeps the power of healing, the magic flower from the King and Queen of the kingdom, the Queen desperately needs the magic flower because she is pregnant and sick. Familiar?
The Kings knights rescue the healing flower from the evil Mother Gothel and give it to the Queen, who gets better and gives birth to a baby girl, they call her Rapunzel.
Mother Gothel is so obsessed with the magic flowers qualities of keeping ageless, young and healthy she steals the baby and keeps Rapunzel in a tower in the woods for 18 years. Her long blonde locks have absorbed the magic healing power you see, so she uses her hair every day to keep fresh.
Everyone loves a Disney film don’t they? I imagine myself as the sick pregnant Queen, however yesterday I was told by the medical knights of ward 727 that the magic healing flower has graced my world – it looks like part one of the Remicade infusion is working! I also imagine that my baby is Rapunzel, sharing the same long blonde locks as me. Maybe she is the one making me better via her healing powers? We have certainly been locked in this tower long enough, my hair is not quite long enough though to hang out the window, to be honest the window doesn’t even open that far anyway. I won’t get any escape ideas, I will stick to using lifts and stairs.
My weekend has been a good one, cautious but good, inflammation went up a little but now it is coming down, I am still pumped with prednisolone steroids at the max oral dose of 40 mg, but I have done well changing from intravenous to oral tablets as it is the equivalent of dropping my body from 100 mg of the potent stuff to 40 mg. tough. I’m shaking all the time and my left hand is spasming, which is weird, I keep losing feeling in my fingers. I have to keep bringing them back to life and my heart rate is a constant 108 bpm resting but I’m okay. Guess it’s the come down, my body adjusting, minerals such as calcium, magnesium and potassium are a bugger to get right with a bowel that doesn’t absorb. Four days ago I had hardly any of these mineral levels in my system, the drugs blast them you see, now I’m pumped back up and it’s too much. I have gone from swollen water in my legs and feet to which I had mistaken for pregnancy, especially in my feet, to skinny body and bump. The latter is a little more comfortable, I can bend rather than sumo squat! All those bananas and coconut water I’ve been raving about have had to stop before I poison myself with potassium over load, poor heart. Mild hyperkalaemia they call it. Go on then, add it to the list.
Aside from the small corrections one has to make I’m hoping my body will just even out the next few days and I will be back on track. The vitamins are giving me more side effects than the crohns, god damn you minerals. It like a Holland and Barrett shop coming at you with a dagger.
The news. Is good.
We. Are. ‘Planning’. For. Discharge. At. The. Weekend.
I am not really sure how I feel today about that, getting hopeful is dangerous for my soul. Getting excited is dangerous for my poor ticker that won’t rest. So I am treating it as a possible option. I have just avoided emergency bowel ileostomy surgery listed today. My bloods are stable for me, medicine is my magic flower and baby is 24 weeks. My Rapunzel is now classed a small human being. Thank you, amen.
I spent a good half hour with my consultant, she is so caring its great a having a women care for you, she gets the maternal bit, saved me from anyone rushing treatment or making rash decisions about surgery. The only downside is emotion, I can see it in her face and it has unnerved me at times when you need strength. Compared to some of her male consultant counterparts which are much more subjective when all ten pile in the room with their clipboards and pads. Which to be honest I like, find comfort in. Apart from you feel like you feel on parade every day. They say I’m an interesting case, medical wonder, constantly defy the odds to get well. Glad I can be of service, must be interesting for them when they don’t have a lot of data, on many of the things we have done or of ladies with crohns, some of the drugs and being pregnant.
Having crohns for 10 years I have read so many medical journals in my bed at night, I do it when I can’t sleep. I have studied blood levels and the effects, allsorts over my time, reading so much medically that I enjoy healthy debate on the doctor’s rounds at 9am :). I feed off information. They laugh, but for me its control because I refuse to not try and understand a subject that controls my life, emotion for me gets too much, especially in current mental head times, so let me eat facts please.
So yeah, how do I feel, I feel like I can’t get excited because I need a second infusion on Friday, my PICC line is in, as you all can see from my PICC blog entry I am ready to be infused up without any vein drama, hurrah. I’m keeping my PICC line until I have a C-section I think because it’s easier. I infuse every eight weeks in the outpatient infusion clinic so it can be used for that as well, easy-peasy. I was surprised it is every eight weeks actually after your first infusion loading which made me think why have I been injecting Humira every week?!. Silly choice that was Sal! I could have saved myself the regular bee stings! Now now Sally, Humira was my angel.
My tan line will be a good one on one arm this year. Who I am kidding actually, I live in England what tan! I don’t think I’m supposed to sit in the sun pregnant or on biologicals anyway and I’m certainly not planning on any trips abroad for a while.
When the infusion is done, they are going to make a plan for me so I can start dropping the steroid little by little to see if I hold. This is always done by 5 mg a time. One little tablet. This is the worst part for me, steroid reduction, I have been through this so many times I can’t remember the count, the worst is getting from 40 mg to 20 mg, once I am at 20 mg I seem to be okay (ish). Good job my partner Matt falls asleep anywhere, anytime, anyplace, he spends his nights sleeping soundly in the most active bedroom ever, lights on, TV on, bath running at 2am, meditation music blaring or sound tracks of rainforest birds or Tibetan chimes via Spotify. (He won’t be sleeping soon though with baby mwahaha!) The smallest change of steroid causes so much bone pain in my hips I really struggle at times. However, 10 mg of amitriptyline at night, a warming heat pad on my back that was kindly collected from Boots by my best friend Jade and a TENs machine will distract the broken bone feeling nicely. I’ve done it before and I suppose, I’ll do it again.
They say all the drugs I’m now taking are relatively safe for baby. Steroids are fine, they might make her a little chubby like her mums current face but I’m told they give steroids to babies anyway for their lungs sometimes, so she may have super powers, as well as her magical blonde locks. The Remicade is usually stopped as an infusion at 30 weeks, but we are going to carry on throughout the pregnancy. This means that baby will be immunosuppressed like her mum when she is born for the first six months. I will have to be careful with precious in that she will not be able to have her live jab injection schedule until six month plus. Less risk. Risk vs Consequence, they say it’s better that she has a little bit of Remicade in her system versus me having active crohns in my body in a million times better. I only think there is one live jab between 0-6 months anyway, not sure which so we will be okay, we must. I was thinking a summer born baby is much better than a winter born baby, at least she will be 3-4 months old before flu and bug season right?
I am incredibly lucky. I’ve been told the gastroenterology team at the QE and obstetricians at the Birmingham Women’s hospital are joining forces to be present at my planned C-section; surgeon, obstetrician and consultant. Amazing NHS care.
I have asked for plan though, as at the moment there isn’t one that is clear like how many scans do I now get? How often? When should we plan for C section, 30 weeks? 35? Full term? I want to go as far as I can naturally. A plan would be good so I can get some control. Not your normal birthing plan most couples make I have to admit, but hey someone somewhere wanted me to have this challenge so, I accept. To be fair ladies, whilst you are all puffing, panting and sweaty messes. Flapping in a water pool, breathing through your newly learnt hypnobirthing techniques whilst in denial of drugs, bouncing on a ball, or whatever you do to stretch that cervix of passage. I will be trotting down to planned surgery with my best face on, hair washed, smelling good in eau de perfume of choice waiting for the good stuff to go in so they can lift my child out of me in pronto time and I get on with motherhood. ha ha. Scar and pain, pfft I can handle it! I win for a change. Sorry I am being very mean? I will miss screaming at Matt though, calling him every name under the sun, I love that bit about childbirth on TV. The man is in the corner of the birthing room eating a kebab being no use at all, whilst the woman is going stir mad. he he I will be giving that one a miss.
The other reason I need a plan is I also have a new purple leather Filofax that needs some date entries. My life has no date entries at the moment, what a weird feeling I usually have something going on every weekend in the summer. We are always so busy and how is it already May? Have to watch this space for plan baby!
Today has been a good day.
- Medicine is holding out.
- Baby is okay we think!
- I avoided the designer bag list. Surgery. For now.
- I might be home in my bed by Sunday.
- Oh, and I have some other awesome news this morning, Dave got his Liver yesterday! (Check out blog: Organs in Need) amazing news, so chuffed for him and his family.
Life astounds me. One day you are up the next it knocks you down.
I am holding out now till my Friday infusion, then hopefully Saturday or Sunday I can come home. I don’t want to jinx the situation so I’m just quietly confident rather than shouting from the roof tops. To be honest fifty days of institutionalisation, walking out free I think I am going to feel like Nelson Mandela leaving Robben Island.
Okay. I went to Robben Island last year, I won’t come close to Nelson’s feelings at that time, and I am very being dramatic! Sorry Nelson.
Imagine though. I can make a peppermint tea when I want. Stroke my cat Oreo all day long, oh I can’t wait for cuddles from my cat, we currently FaceTime sometimes at breakfast, I eat mine and he eats from his bowl and nudges the phone, I am such a proud cat lady! Autonomy would be bliss. The prospect is making my heart rate rise even more than it is. So that is why I can’t think about it just yet.
For now I am going to sit in my tower with Rapunzel and look forward to some more magic flower. Hope that the inflammation stays right, I have no reaction on Friday and all is good with the world. Then home. Everything crossed. The Tangled Healing song is now my new anthem, quite catchy huh?
You guys can watch more Tangled before you go. Why not? This song is me in my room, how I spend the day, minus any cooking, clearly you all know about the NHS menus by now. Today is white fish in parsley sauce. Yummy!
Okay, so this is my real tower. It’s like a teenagers bedroom, Hannah Montana. You got me!
Here’s to a new day. J