amber rahim

Chronic illness: the parts we don't talk about


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Maybe I don’t get to keep this life

So just recently, I made my friend, who just finished her chemo for great cancer, cry.

And for good measure, I made myself cry too.

You see, we are working on a project together about compassion and hugs. Given our respective painful pasts with illness, we think there is too little in the world and we want there to be more.

She couldn’t see how others would relate to her so I told her what I saw (and yes, the tears are coming again).

She had a life, with her family and friends and then cancer came along, threatening it all. Because cancer can kill. We don’t really say that anymore but it’s true.

Death, that constant companion to us all but who we ignore like that really smelly fart in an elevator (we all know it’s there, it’s unpleasant but we all pretend it doesn’t exist).

A cancer diagnosis brings death back into the picture and we realise

Maybe I don’t get to keep this life that I have.

As much as it brings tears to my eyes to type this, and all of a sudden my nose is really snotty, I need to say this

we don’t know what we are going to have tomorrow. And we can’t do anything about the past. We can only change now. So whether you are doing the laundry, paying bills, or are on holiday

Enjoy it!

Find something you like in the activity you are doing, no matter how small, and focus on that. Grow it and enjoy it.


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Lord help me please. It’s tough being a mum

I promised myself that I would never do this. But I did. I knew it would hurt my child but I did it anyway.

I let two adults hold her down while she was kicking and screaming while another performed a medical procedure. And one of the adults holding her down was me.

But how did we get here? How did we get to this sunny day, full of hope of the lightheartedness of sumer, but doused with an icy blast to my heart like the arctic ocean has crashed down on me?

It’s a long story but I will try to keep it short.

She has developed a fear and trauma about having her mickey button changed. She’s been through EMDR to deal with the trauma. She and her psychologist made a plan to deal with some of the scary things:

  1. Seeing the whole in her body where the mickey sits. I’m not surprised she is scared, it gives me the heebee geebees just thinking about it. So what’s the plan? She gets to watch the mine craft films on youtube that she loves
  2. Seeing all the medical equipment laid out makes it feel like an operation. So we would keep that covered.

Everything was arranged. The psychologist was there. She had picked out her present that she would receive after her new mickey would be replaced.

Then she woke up this morning and it all went to hell. Her first event of fear and anger was pretty bad. So upset she started vomiting. I was taken back to the last time her mickey button exploded and I had to be a tough mama.

How do you get through to your child when she is out of her mind with fear? You can only tell them that you hear them. Over and over until they calm down.

The major event was at the hospital. We had agreed that J and I would not be in the room. F wanted it to just be the psychologist and the nurse. It was time and then she went wild. I can’t even call it a tantrum because it wasn’t. It was so much worse. It was a frightened girl who would do anything to make sure that she could day no.

I wholeheartedly believe that she should be heard and that we should take a “no” from a child seriously. But without her treatment, she would die.

And her treatment isn’t nice. Half the discomfort she feels comes from her medicines. And we can’t afford to have her refuse treatment. Ever.

If I listened to her no today, what would I do when she needs an IV? An IV placement is painful and she has really thin veins so it can take 30 minutes or more to secure one. 30 minutes os someone poking a needle in her. What if she says no then?

And her IVs always need to have potassium. That burns. What if she refuses that? Her potassium levels can drop so quickly that she could have a heart attack. It may seem far fetched but sadly we lost someone in the Bartters & Gitelmans community this way about a month ago.

With her condition, when she needs an IV, it means that she is seriously ill and needs it right away. Not when she has calmed down. Not later. No time for discussion. Now.

If I listen to her “no” now, it opens the door to her saying no more often. And we can’t do this. I can’t do this fighting every time.

I can’t let her say no. It’s either take the treatment or get life threateningly ill really quickly. And then give her the treatment when she becomes unconscious. And providing it’s not too late, maybe her kidneys won’t get damaged. Maybe she won’t die.

So that’s how I came to be holding her down on the hospital bed. Her arms being held by me, her legs by another nurse. And a third nurse changing her mickey button.

Her father carried her to her next appointment (it never stops with a chronically ill child). We bought something for her to eat along the way. She smiled eventually.

We will follow up with the psychologist later. She had never seen anything like this in her entire career. The strength of resistance. But we will regroup and look at how we can support F so that it isn’t so traumatic next time.

But I feel like crap. I want to eat bread. Even though I’m on a 3 week gluten free diet I want to scoff bread there’s a wheat famine approaching. But, given the very real medical reasons behind my gluten free diet, that would be like bashing my head with a sledgehammer.

So why did I do it? Why did I choose to be the one in the room with her? I know that J would have done it. But I just knew that I could get her to relax her stomach muscles. You see, she can scream, kick and relax her muscles at the same time. I don’t know how she does it, but she can. You see, it’s impossible to put a mickey into the whole in the stomach if your muscles are tense. We know, that’s one of the chapters of this story.

And she did listen. Even through the screaming. Even through the kicking. She listened and relaxed her abdomen for the change.

I just hope that she really heard me when I said

“I didn’t want to hurt you. But you need this medicine. Your illness sucks and I wish I wold change it but I can’t.”

Oh man, today it sucks to be a mum. Lord, help me please.

 


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Where’s the line?

This blog is supposed to be my story: what it’s really like, living with chronic illness.
It’s my view as a “patient” myself and my view as a parent to a chronically ill child.
When I write as a parent, where is the line between my story and Fs story?
When things happen to her, they affect the whole family, they happen to us too.

Yet, they happen to her first.
So am I telling her story or mine?

That’s the question on my mind lately. It’s also why I’ve not been blogging so much lately.
Did I drift away from my story to hers? Admittedly, it is so much easier to talk about her pain than my own. That may sound strange; a mother normally feels the pain of her children keenly. And that’s true: when she hurts, I hurt. But there is nothing more sharp than our own pain.
For while we feel bad when they fall and scape their knees, it is only when we fall and scrape our knees that we realise that it burns like a b*tch.

So where’s the line? Oh yeah, back there. Got it.


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Tough love

for those who know me on FB you know that Fs Mickey button exploded. Again.

She’s still traumatized from the first time that happened. And from the last time the nurse changed (when the nurse had to push it through her abs of steel).

So my dear daughter, when I heard what happened at school on Monday I knew that it was going to be another really hard day for you.

You walked in knowing what was going to happen (it’s at these times that I wish you weren’t so smart).

I held you as you cried your heart out. Told you it was going to be ok, both of us knowing that there was a bump in the road to “ok” that you needed to face first.

I wish I could have held you until your fears disappeared. But we had 30 mins to get to the hospital and get a new mickey in place before the nurse left for the day.

So I put on my firm, tough mama voice and made you come with me. You were literally sick with anxiety. I wiped your mouth and then we had to keep moving.

We needed your cooperation: when you tense, your abs create a solid wall where it’s almost impossible to insert a new mickey into that hole in your stomach.

So we practiced at home, in the car, on the hospital table. And somehow you managed to scream and relax your abs at the same time (holey moley batman, how did you do that?)

I’m sorry I had to make you choose. Choose between admission to hospital and a potassium IV (that burns people, it burns your veins) or let us change the Mickey.

Im sorry. I hope you believed when I said I wished it could be different.

I wish that your smile on receiving the cuddly monkey toy from the nurse went all the way in, to your soul. I wish that it could heal the scar on the inside as quickly as it changed your expression.

I wish I could have held you until your fears were gone.

And I hope that one day you will understand that I was doing my best for you: making the tough decisions.

Tough love. Sometimes it sucks to be a mum.


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Rock and a hard place: Back to a PEG?

for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.

Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.

it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.

F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).

She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.

So after 3.5 years building up to F allowing me to do it, we are back to square one.

Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).

Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.

Rock and a hard place.

(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.

so, what to do?

Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).

Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.

Rock and a hard place.

The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).

I think it’s time for some Dr Seuss

WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET

YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET


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How can pink donuts be my downfall?

I have written a lot about how I have dealt with never ending sickness extreme eating problems (i.e. nil by mouth for 5 years).

I think I have written about it with patience, become a little bit wiser through the process.

Well, today I do not feel even remotely wise or patient. Today sucks.

You see, little sisters copy big sisters. In everything. All those quirky eating/non eating habits that I was able to deal with in F, who has the illness and the multitude of reasons why she does that weird stuff, well, they just suck when S does them.

Take donuts. Until recently, F didn’t eat any kind of bread or bread stuff. Yet she was interested in the little sprinkles on pink sprinked donuts.  So what did she do? Pick off the sprinkles.

S loves bread. I mean really loves it (except crusts but hey, she’s a kid). How does she eat donuts? She picks of the sprinkles (and icing because she’s a sugar junky).

Now I don’t want to force either of my kids to eat junky donuts, I really don’t. But I want to shout “just eat the effing donut!”  Sometimes I feel trapped in this circle of weirdness with food and only one of them has the illness!

Can’t catch a break. You’d think it would be easier with the “healthy one”.

Sigh.image

Ok, whingeing session over.