amber rahim

Chronic illness: the parts we don't talk about

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“Jobsworth” at the pharmacy

Ever heard that phrase “oh, that’ll be more than my jobs worth”? Well, if you are British you might have. It’s a joke about the types of unhelpful people you can run into in heavily bureaucratic environments.

Oh, I could help you but it’d be more than my jobs worth to do that

That’s the feeling I get when I call the pharmacy to order more medicines for F. Not with everyone at the pharmacy, just the one lady.

You see we have a running repeat prescription that covers the whole year. At the beginning of every year, F’s Nephrologist makes out the prescriptions for all her medicines and sends them to the pharmacy. Every month, we tell them what we need and they deduct it from the year total. Simple, I thought.

Yet this one lady gives us hassle.

Every time we call.


“Do you have a repeat prescription for this?”


“Yes. We have a prescription to cover the year….. etc….” then in my head “It’s in your SYSTEM!!!”

Every time we go in to collect.


“Do you have a repeat prescription for this?”


“Yes. We have a prescription to cover the year….. etc….”

Then she grudgingly hands it over.

Now I know she has protocols to follow. I know how strict the rules and regulations in the pharmaceutical industry are (I worked in exports to the Middle East and boy, the hoops you need to go through to get that job done!) But no one else at the pharmacy does this. They all know we have a year prescription.

But our daughter has been getting medicine from their for almost 8 years. And still she interrogates us. We have never not had a prescription.

I don’t think it is personal. Although, when you are standing in front of her steely, suspicious gaze in front of an entire pharmacy full of people, and she starts her interrogation, it sure feels personal.

So what kinds of drugs are we talking about here? With a really high street value? You’d think so, but no.

  • Sodium chloride (salty water, but special salty water)
  • Potassium chloride (different kind of salty water)
  • potassium citrate (I don’t know, but it helps her kidneys from turning to stone)
  • Nexium (to help with acid reflux.)
  • Indomethacin liquid (used in treating eye infections for normal people but it’s the main magic drug for Bartters peeps)
  • Vitamin D

So dear lady at the pharmacy, I do’t know why you give me such hassle. I don’t know what you think I am doing with this stuff. I couldn’t administer the lethal injection with the potassium chloride we get (I checked. Say what? Yes I know, it’s freaky. I was curious and wanted to know if we had dangerous quantities in the house and I had some time on my hands).

Dear lady at the pharmacy, please stop. Most days I can shrug it off but we have enough crap to deal with and traumas that we don’t need you to hassle us over something so meaningless.

Go find some other way to exert your power.

Try smiling.


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.


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.



Out of the mouths of babes

From the beginning we have been very open about Fs illness – with the family and with her.

Her condition is incurable and she will always have it. I have said that myself so many times that this incident really caught me by surprise.

J took the girls with him when he went to the hairdressers, While there, F needed her medicine (she gets it every hour) and the hairdresser was asking about it. And the really typical question came

“Can they fix it?”

F answered

“No. I’ll have this forever”.

J recounted this when he got home. And I felt a little stab in my heart when he repeated what F had said. It was like someone took a knife and just nicked me in the heart.

She was so matter of fact about it. For her it is what it is. And I’m immensely proud of her for her attitude.P1040632

Yet it just seems so painful to me when I think of my little 7 year old girl saying that she will have this illness forever.

Maybe it just makes it more real.

Maybe it’s because it puts the truth into the context of her life.

Whatever it is, I guess it just goes to show that acceptance of this illness doesn’t mean that it’s ok that she has it.