Lupus Rash is Back!

Ouch!  Itchy Lupus Rash!  Just another lupus rash-this one on my chest.  This rash is a necrotizing type, deep endometrial lesion.  I use betamethazone cream to heal.  This type of lupus rash typically takes about a week to 10 days to heal and leaves skin discoloration.  You can check out my rashes page for more rashes-different kinds.  All from lupus.  ;)

The Calm Before the Storm-Amputating my bad TOE with Lupus

The toe must go!

I finally found a surgeon (orthopedic) to go in and obliterate my neuroma under the 4th toe right foot. He suspects its a stump neuroma with a damaged/entrapped nerve. I have given him permission to cut the nerve, remove the nerve and if necessary amputate the toe!

What do I need that toe for anyway? It’s the thorn in my side, the cause of a massive amount of pain (it comes in flares). I’m the lion with the thorn and he is going to remove the thorn. I am so so thrilled! Yipppppeeeeeeee!

The bad side: Once again I’m off my lupus meds, no cellcept, no meloxicam or plaquenil or of course prednisone. Ouch. Here comes the joint and muscle pain. The afternoon low grade fevers, the queasiness. It’s worth it though.

I know many people with lupus have nerve problems. Here’s some info about neuromas, specifically Morton’s neuroma which is usually located between the 3rd and 4th digit on toes. If you have one-you KNOW how exquisite the pain can get. It’s a thousand papercuts, a sharp knife slice over and over.

From Mayo.com:
Morton’s neuroma is a painful condition that affects the ball of your foot, most commonly the area between your third and fourth toes. Morton’s neuroma may feel as if you are standing on a pebble in your shoe or on a fold in your sock.

Morton’s neuroma involves a thickening of the tissue around one of the nerves leading to your toes. This can cause a sharp, burning pain in the ball of your foot. Your toes also may sting, burn or feel numb.
Typically, there’s no outward sign of this condition, such as a lump. Instead, you may experience the following symptoms:

A feeling as if you’re standing on a pebble in your shoe
A burning pain in the ball of your foot that may radiate into your toes
Tingling or numbness in your toes
When to see a doctor
It’s best not to ignore any foot pain that lasts longer than a few days. See your doctor if you experience a burning pain in the ball of your foot that’s not improving, despite changing your footwear and modifying activities that may cause stress to your foot.

Morton’s neuroma seems to occur in response to irritation, pressure or injury to one of the nerves that lead to your toes.

Treatment depends on the severity of your symptoms. Your doctor will likely recommend trying conservative approaches first.

Therapy
Arch supports and foot pads fit inside your shoe and help reduce pressure on the nerve. These can be purchased over-the-counter, or your doctor may prescribe a custom-made, individually designed shoe insert — molded to fit the exact contours of your foot.

Surgical and other procedures
If conservative treatments haven’t helped, your doctor might suggest:
Injections. Some people are helped by the injection of steroids into the painful area.
Decompression surgery. In some cases, surgeons can relieve the pressure on the nerve by cutting nearby structures, such as the ligament that binds together some of the bones in the front of the foot.
Removal of the nerve. Surgical removal of the growth may be necessary if other treatments fail to provide pain relief. Although surgery is usually successful, the procedure can result in permanent numbness in the affected toes.

Stripped of Dignity and Pain Medication from a Dumb PA

Letter To My Pain Management Doctor,

They took me away in what seemed like heavy chains
They clinked and dragged along the hard floor while my heart fluttered and sank
Go and don’t come back I heard..it rang in my ears while my heart jumped in shock
Your doctor is dismissing you because there aren’t enough drugs in your system.
I forgot that the bottle said “take as needed”
I forgot I was without my other meds by their mistake
I forgot it all.
I didn’t see what the paper said, the words floated in jumbled up clouds
While my heart sank to the floor
And all I could hear was the chains dragging me down
He pushed the paper to my face and thrust the pen at me
Saying your doctor said to sign here..
All I could see was a blur and I could not get my eyes to focus on the paper
All I could hear was your doctor wants you discharged and you did not take the pills as prescribed.  Someone signed the page with a bewildered look, it was me.  Usually so “with it”, so “on the ball”. No more.  He took my dignity in an instant.

And it came pouring back to me..he asked me if I wanted to hurt someone
He asked me if I was beaten at home or in danger when the only danger I felt was this chair, this room spinning around, out of focus, sign the paper he said, sign the paper.  My heart hit the floor.  My tears blocked my view.  I didn’t even see the words on the paper but I didn’t want him to know how hard I tried to read them but could not.  I could not see the words.

He stripped me of my dignity.  Does it matter I’d been there 8 long years or that I love my doctor, respected him and felt nothing but gratitude for the life he gave to me with his treatments.  He really told this PA, this fake doctor to discharge me?  No, couldn’t be, my heart hit the floor while my eyes welled up.  In one foul, mean spirited swoop he stripped me of my dignity.

In the distance I heard the pharmacists voices calling me a drug addict, while the room spinned and the paper blurred.  I heard all my other doctors follow in a long line call me an addict too and heard all of them say, please leave, your doctor is dismissing you.  My heart hit the floor.  I heard the chains dragging.
He stripped me of my heart and I can hear my dignity in chains drag across the endless floor.