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Chronic illness: the parts we don't talk about


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Gratitude: it always has a place in your life

Just when one doctor shakes your faith in the profession, another will remind you why you put your trust in doctors.

In the Great Mickey Change Challenge, we have had a lot of set backs, with each event adding to the trauma.

But on Friday, something different happened. Using a combination of a nose spray and laughing gas, we put F to sleep and the mickey got changed.

I could talk about how her blood pressure dropped so low that we couldn’t wake her for 2 hours.

I could talk about how her heart rate dropped to 50 bpm and we had to place an IV to get her salt up.

I could describe how exhausted and worn out she looked as she stepped into the car.

But today is not that day.

Today is a day of gratitude. I’m grateful that the mickey button finally got changed after 6 months, 4 months after it was due.

I’m grateful that the doctor was kind, thoughtful and treated her like a person.

I’m grateful that they saw her flip from sweet angel to angry terrified monster when she woke and saw the IV in her arm (so now they have seen for themselves why the gas is necessary).

I’m grateful that J took her to this appointment instead of me. After my appointment on Thursday with a really stupid doctor, I couldn’t face it.

But most of all, I am grateful that F has finally had a mickey change experience that was not traumatic, frightening or painful.

I’m not sure how long we will need to keep using the laughing gas and the spray, but knowing a timeline doesn’t actually help. What I do know is this: finally we have found a way to make a very necessary procedure easier for F. We are not adding to the trauma any more, we are gently and ever so slowly, showing her that it doesn’t need to hurt. She doesn’t need to be afraid. Not of this.

Gratitude always has a place in your life


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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.

She:

“Do you have a repeat prescription for this?”

Me:

“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.

She:

“Do you have a repeat prescription for this?”

Me:

“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.


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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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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.


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I love you, but I don’t always like you

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Parenting is supposed to provide unconditional love: you for your children and from your children to you. And it does.

That’s a parenting truth.

Here’s another parenting truth: your kids won’t like you all the time.

They go through stages where they prefer daddy over mummy, and sometimes, mummy over daddy.

Then they hit puberty and don’t like either of you.

I can see you nodding, Can I get an Amen?

What people don’t talk about is how sometimes you, wonderful parent that you are, don’t like your kids.

So I’ll fess up here and tell you my truth:

Sometimes I don’t like my kids

In fact this last week I have seriously disliked my kids.

  1. Is it because they don’t listen at bedtime and are messing about the whole time?
  2. Is it because they are testing the limits on food requests? Taking advantage of their eating issues to just pick their favourite food?
  3. Is it because I haven’t had enough me time to recharge my batteries?

Yes. Yes to all of them. But mostly it’s No.2

F does have quite major issues with food and it’s still really hard to have food available for her that she will actually eat. I’ve written about it many times and our patience and encouragement is working and she is eating more and more. Did I mention that she ate roasted butternut squash? Voluntarily. And she keeps asking for it. Isn’t that fantastic?

Yes!

Except for when it isn’t. Except for when she can’t face it anymore.

You see, with her condition, her electrolytes can go all over the place, she ends up feeling nauseous and then it becomes hard for her to eat. Her appetite disappears. Food smells and tastes funny to her.

So you never know when she is going to stop eating. Because of her condition.

And then she’s a kid. All kids do their utmost to create the most perfect life for themselves (go kids!).

  • They want to wear their favourite clothes all the time.
  • They only want to eat their favourite food.
  • They want to watch their favourite tv programs.

So, is the sudden difficulty with eating a result of her condition or has she decided she doesn’t fancy it anymore?

Well, I don’t know either. But my gut tells me that she has been playing me lately. Playing me. And I don’t like it.

I got frustrated. It showed. So I told her my suspicion. I asked her outright:

Are you only eating things that you absolutely love and fancy eating?

Yes, she replied.

Mo’fo’!

I’m going nuts trying to feed her. And S? She doesn’t have these issues but she’s a smart girl. She sees the pattern and copies it, uses it to her advantage.

So we had a talk about it. We have called a truce.

But here’s another truth:

The dislike is temporary. The love is permanent.

p.s. her growth has stagnated and her neph says she needs to gain weight. Hmm, I wonder how much this has got to do with my tension? Probably more than it should.

 

This story was also published on Youshare so follow the link and like it there please.


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“I want to be normal”

For so long, F has consumed very little food by eating. Apart from the nausea, the extremely sensitive gag reflex and the throat spasm affecting her ability swallow, there has been another factor: her teeny tiny bites.

No matter how small a piece of food you give her, she will always find a way to pick a bit off and eat that. Crumbs. Her bites have been crumb size.

With increasing regularity she has been taking bigger bites, always showing us “look at the size of this!” and then putting it in her mouth.

In the last couple of months she has actually been putting enough food in her mouth in one go to fill her mouth; enough to puff out her cheeks even. It takes effort. Sometimes you can see that she is gagging and with the incredible control that she has, she stops herself from vomiting. She is proud of herself for setting a challenge and then making it. We cheer her on.

I never thought much about it (I only drive myself crazy trying to figure out how I can make her eat).

It’s part of her journey of learning to eat. It’s the hard way because it is conscious. She actually thinks about how to move food around her mouth, how to move it to the back so she can swallow. Next time you take a bite, pay attention. Do you even know how you use your mouth to eat? Well, unless you are a speech therapist, you probably don’t know. None of us do. We learn to eat before the age of two and we are not aware of what’s going on. Food goes in, we chew, we swallow. End of story.

For late eaters like F, who started eating much later than that, it’s a conscious process. They are aware about what’s going on when food goes in the mouth. Quite frankly, it’s quite a gross process.

So as parents, we encourage eating (I wrote about how we do that here and here) and allow her to set her own pace. If she wants to take teeny tiny bites, then ok. It will just take longer.

Then something happened and my heart paused, then beat again. Tears burned at the back of my eyes.

Just recently she told J why she does this. And this is what she said:

“I want to be able to eat like you guys do, you know, normally”.

 

We forget how much children are aware of. They don’t talk about how they feel different but they do feel it. They don’t say that they feel excluded, left out from something that everyone else can do (like eating). But they do feel it.

We should not take silence as “everything is ok”. If we listen carefully we can find out so much of what is going on in their lives.


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I don’t know what this means, but I bet you’ve thought it too

On monday night we were all sitting together at the dinner table chatting.

The girls are fascinated by age and love to play this game “when I’m x, how old will you be?”

J went big on this. “When A is 80, F, you will be 74 and S will be 70”. The kids loved it!

I watched their happy faces and tried to imagine them sitting together having fun, at those ripe old ages.

And I could. Except for F. This little thought fluttered through my head so fast that it was almost imperceptible.

“Will F reach 74?”

I didn’t have this thought about the other two.

Now, you never know what the future will bring and I don’t know what it means, that I can picture S and A in their 70s and 80s but draw a blank when it comes to F.

I don’t even want to try and interpret it.

But I just bet that all of you out there, with kids with a chronic illness, will have that same fluttering thought if you play this game.

You might even have that thought about yourself.

Is life just so much closer to the edge when you are sick?