Radioactive Pancake

On Friday, I was introduced to a new friend.

It was all part of my Gastric Emptying Study. The radiology department laced a pancake with radioactive isotopes and gave it to me to eat. They wanted to watch how well my body made short shift of my new friend. Considering what it was made of, it didn’t taste too bad, but I wouldn’t exactly have said that I wanted to hang around with it all day.  But regardless of my feelings on the matter,  my new friend decided that we had a special connection.   We were destined to be together, and four days later, here we still are.

Like the visitor who settles in for the duration, Radioactive Pancake wanted to stay close.  It liked me. It certainly liked my stomach. I managed to get it down my throat (without any maple syrup!  just dry old radioactive pancake).  Food, when you are fasting, is food. Hungry Rach is not fussy Rach.  So I swallowed that pancake down like a good girl. I sent it on its way.  But instead of moving on through, waving good bye at my epiglotis and seeing me ’round (sometime later in the bathroom) my new friend settled in for the morning.   It lay back there in my stomach, put it’s feet up and asked for a cuppa. Or five.

The idea of the test is that you swallow the pancake and they take pictures of you while you lie in a tube. Actually, you are not even in the pictures, the machine only captures the radioactive isotopes.  It measures where the pancake is in a series of shots. If your gastric system is working efficiently, after 2 hours, 90% of the pancake should have passed through your stomach.  If it isn’t, you have to stay for longer to get more photos taken.  Time lapse digestion. Or, more accurately, time lapse non-digestion.

I can only conclude that my tummy is a lovely spot to hang if you are a pancake.  That thing did not want to move. After a few hot drink inducements, and a few more hours, it eventually was persuaded to transit into the small intestines.  I finally got to leave the time-lapse-tube and go home.  It had taken a whole day.

Dear Radioactive pancake.  I know you are still in there.  I would like to suggest that perhaps you move to Russia where I believe there are all sorts of radioactive substances, somewhere in the vicinity of Chernobyl, who would happily befriend a pancake like you.  It’s been a ride, getting to know you, but I’ve got other stuff to be getting on with now.  ‘kay?

See ya later radioactive pancake-inator.  Don’t forget the toilet paper.

 

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A Medical Menagerie

 

This may be of interest to you if you also have Dysautonomia, Pandysautonomia or Seronegative Autoimmune Autonomic Ganglionopathy, or if you know someone who does.  If neither of those apply, please don’t feel obliged to read through.
I record below all of my medical weirdnesses because I know that people will find recognition here. I took a lot of comfort from learning that there were others like me when I first heard my diagnosis.  I have recorded all my symptoms because sometimes, something small can be a clue.  I am looking for answers and you might be too.

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Symptoms From Top to Toe:

Screen Shot 2014-05-26 at 4.32.54 pm‘Cognitive Fog’; memory issues, variable ability to concentrate, dizziness.
 These challenge my very identity.  I was smart and now thinking is much harder for me. Sometimes I sound like I’ve lost my marbles, my words get jumbled and my memory scrambled.  It’s distressing.  If I sound weird when I talk to you, it’s not that I am stupid.  I am just struggling.

Screen Shot 2014-05-26 at 4.32.54 pmI have trouble with vision sometimes, my eyes go into focal spasm.  My pupils are not always equal in size and sometimes they don’t adjust to the light properly.  My eyes are often dry.  Other times they stream and people think I am crying.  But it’s just my Dysautonomia (as moved as I am by whatever it was you just said)!

Screen Shot 2014-05-26 at 4.32.54 pmDizziness when I have a postural change has been my reality since I was eight. Sometimes I am dizzy even lying in bed and it feels like someone is slowly tilting my bed backwards in a full circle. It feels a bit like being in a raft on the ocean and I feel like I am going to fall off. Or I have a kind of up-and-down dizziness when I am just standing (like I’m bouncing internally), or presyncope when I bend over, or stand from squatting. My dizziness makes me feel unsteady on my feet and I bang into walls and doorframes. I always have to steady myself against something if I have to stand. I use a ‘shooting stick’ cane that has a seat so that if I need to sit quickly, I can. I can also use it to prop myself up.  Descending stairs is terrifying. Dizziness is never something you get used to. You learn to breathe through it, but your body always feels stressed during a dizzy episode.

Screen Shot 2014-05-26 at 4.32.54 pmThe inside of my mouth feels like after you’ve taken a big mouthful of hot soup.  That burnt tongue feeling? It is sometimes tender, dry and my gums are red and sore.

Screen Shot 2014-05-26 at 4.32.54 pmHeart issues are part of my scenery, managed mostly by my wonderful pacemaker.  I don’t take cardiac medicines anymore.  My heart rate ranges from the early thirties to the mid two hundreds. If my heart rate drops rapidly, my pacemaker kicks in.  I have had thousands of rate drop episodes since my pacemaker was inserted. I am grateful for it every day. My blood pressure can be very low, or very high, or somewhere in between.

Screen Shot 2014-05-26 at 4.32.54 pmMy stomach, digestive tract and bowel can miss important nerve messages that make them work.  This can result in a ‘pseudo obstruction’.  First, I get ‘post prandial bloating’; my tummy distends like a ten-month pregnancy.  Then, all tummy services are suspended  (so much for never having to be pregnant again)!  These days I wear forgiving clothes and I frequently get asked if I am expecting. When it is extremely bad, I make the trudge back in to hospital. It’s hideous; but my new normal is a bowel that doesn’t work without extreme inducement. I take ten various doses of laxative a day and also self administer enemas.  I hate this symptom most of all.

Screen Shot 2014-05-26 at 4.32.54 pmI am nauseous on and off all day and especially at night.  This is a side-effect of the medications which  produce peristalsis (intestinal squeezing).

Screen Shot 2014-05-26 at 4.32.54 pmMy bladder either retains urine and have to self-catheterise, or I am incontinent.  I have detrusor dysfunction, so emptying my bladder fully is tricky. Sometimes for brief and lovely periods, the pendulum passes through the middle of the arc and my bladder behaves like it used to.

Screen Shot 2014-05-26 at 4.32.54 pmMy body doesn’t regulate temperature properly.  Some parts of my body can’t sweat anymore, so other parts of my body overcompensate.  I struggle greatly with heat.  I don’t know how to dress for the conditions because my experience of them is not accurate.  In the past, I often over-dressed or under-dressed my children.  Now they are old enough to let me know if they need thermals and a jacket.  For me, it is always layers so I can try to manually adjust things from the outside in.

Screen Shot 2014-05-26 at 4.32.54 pmI get fasiculations in my muscles, in random places all over my body, sometimes these go on for a long time, other times it is just for minutes.  Sometimes, they are not there at all.

Screen Shot 2014-05-26 at 4.32.54 pmMy leg muscles are weak, so standing up from a seated position is hard.  I struggle going up and down stairs or uphill.  My left leg often burns.  I’ve been told this is nerve pain.  Sometimes I have a strange gait, it is tricky at these times to lift my feet properly.

Screen Shot 2014-05-26 at 4.32.54 pmI have pins and needles and burning sensations in my feet and hands, known as peripheral neuropathy.  We found an excellent medication for this, but now I only take it when it is extreme because the medication made my brain fuzzier.

Screen Shot 2014-05-26 at 4.32.54 pmI live with fatigue. It stands to reason that my body is tired.

 

Medications and Treatment (pre-Immune Suppression)

The general approach with Dysautonomias, is to treat the symptoms. So for everything you see above, there is something I take or do to try and help it.

 

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  1. I take Mestinon, Domperidone and Cyclizine 4x day.
  2. I take Solificenate Succinate, Gabapentin and (a list too long to be bothered recording) of laxatives on an as-needs basis.
  3. I use intermittent self-catheterisation and enemas as necessary.
  4. I also have, and highly rate, osteopathy (thank you Glyn, you are a genius!)
  5. I have iron infusions when my iron gets too low from malabsorption (these are also genius).
  6. I am currently seeing some immunologists who think it is probable that I have sero-negative Auto-immune Autonomic Ganglionopathy.  Pulse IV steroids point to an auto-immune aetiology, so moving forward I may trial other immune modulation therapies.

I rely on my husband, my kids and my friends for help, encouragement and support.  I don’t like to ask, I don’t like to receive, but I am learning how.

Still with me?  You are amazing!  Thanks for sticking around!