A diary of my discontent

I will be honest from the start, there is no punchline or resolution to this post.  Instead it is merely a written outpouring of my frustrations, a catalogue of my annoyance.

A diary of my discontent.

I took Molly’s casts off last week.  They were not as we hoped, a miracle cure to the ongoing foot pain she has had since Christmas. Indeed if anything, the ongoing pain that rolls around her lower limbs seemed to intensify rather than abate.  So with approval from physio I took the coloured cases off my daughter legs.

Then called the GP again, then the physio, then the orthopedic department, and finally the rheumatology
 team.

Then I sat with a cup of tea and lamented the loss of the private health that had been a perk of my previous job.

It was exhausting, a battle I was sick of fighting, but part of a war that shows no sign of ending.

Molly’s feet have ached since Christmas, from Easter onwards the pain has intensified to the point that she often sobs herself to sleep.

She describes walking without crutches as agony and finds it just about bearable to limp along with one under each arm.

Until six months ago she ran rather than walked, danced instead of sitting, and never stopped to rest.

What I see before me is a shadow of that girl.

And it is a crying shame.

We went back to rheumatology today.  I must confess I feared they would confirm my fear.  That this was potentially a case of Juvenile arthritis, another autoimmune diseases to sit alongside her Type 1 Diabetes.

But my fears were unfounded.  It doesn’t look like arthritis.

Nor does is seem to be Severs.

All we seem to know is that it is getting worse.

She has been referred for an MRI, to check the muscles, the skin, the bone marrow, and everything else living under the soft skin which covers her hidden injury.

It is at least two weeks away.  Two more weeks of hearing her complain of soreness, two more weeks for her to feel sore.

We do have a tentative diagnosis, to fill up my Google hours from now till then.

Complex Regional Pain Syndrome.

Search it and you will find it means pain with no reason and pretty much without cure.

It means the battle rages on, the war intent on continuing.

Both our frustrations are running high, my bedside manner is appalling and she makes a terrible patient.

I take my hat off to those who manage far worse and cope with much more.

It just seems so incredibly unfair to be all happening to a child.

Grumble over, the funny will be back tomorrow.