Two Years

Came across some photos from two years ago and was kind of shocked at what a big difference between now and then so I took a pic in the same pose. Two years ago this week I had just started chemo.  I had gotten out of the hospital after having severe brain seizures (yep, 7 […]

Shingle Bells

Shingle Bells

Today took an interesting turn in my neverending joke of health.  I woke up with a searing pain on my back, reached back and felt bumps.   I took a look in the mirror and there were lovely red spots which hadn’t been there the night before.  I rushed off to One Medical – thankfully […]

The New Normal – Living with a Chronic Illness

I have to come clean here.  I have to admit to the world – and probably more to myself – that I am a person with a chronic disease.  Yep.  There I said it.  I know that most of you know that I have lupus.  I mean, come on, it is the subtitle of my […]

A love letter to my white blood cells

Dearest White Blood Cells, Oh you pesky little buggers that keep me alive and free from nasty infections.  I never really thought of you much and that was wrong of me.  A terrible oversight that makes my heart ache and my mind tense from the thought of what life could be without you.  Alas, at […]

I lied. A chemo followup. Hilarity and pain ensue.

So it is Saturday following the chemo that I had on Monday. And my perspective on chemo has changed radically from the afternoon that I wrote that post after having spent 3 days in the hospital following my infusion. I arrived home around 5:30 in the evening and felt completely fine.  My lovely friend and […]

What happens at chemo?

I bet some of you are wondering what actually happens at a chemo session.  So I figured I’d break it down for you. I am lucky because I only have to do my treatment every 3 weeks.  There are people that come in days in a row for weeks or longer. Here is how it […]

Things you probably don’t know about transverse myelitis

Not that I would expect anyone to know a whole lot about transverse myelitis, but here is more information on the spinal inflammation that I have and why I walk with a cane these days. By Kevin Weilacher 1. It is a cousin disorder to Multiple Sclerosis. 2. Fairly rare disorder, only 2-5 people per million […]

Sun sensitivity in lupus

Leaving my house these days takes almost as much energy as actually going out.  It is pretty complicated due to the fact that I have sun sensitivity issues related to the lupus. Until last year I didn’t even know that I had any sun issues.  I happily would hang out at the beach and never […]

My routine

I have gotten into a daily routine during recovery. This helps my body know what is going to happen when. 6:00 am Wake up 6:30 am Eat breakfast – usually Cream of Wheat 7:00 am Pee – Since I catheterize, I have to keep track of when I go 8:00 am Take medications 7:00-10:00 am […]

Something like a Raynaud’s Phenomenon

As part of my fun with Lupus series, I wanted to talk about one of the annoying (amongst many) afflictions that I face. Raynaud’s Phenomenon Raynaud’s phenomenon is a condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose. Yep.  Snow or […]