Suffering

[Ash Wednesday]

Today marks 6 months that I have stopped using topical steroids. To make a long story short, this has been single handedly the most I have ever suffered, certainly from a physical standpoint, in my entire life. I would also say I have mentally suffered just as much as when I lost my mother.

I trust that will get better, but this has been an excruciating and extremely painful process. It also fills me with shock and anger that over 10 years of medication they gave me was the source of my so called "eczema" and the addictiveness of it isn't addressed. If you look up www.itsan.org or google "red skin syndrome" or "topical steroid addition/topical steroid withdrawal" then you will see what this is.

• Skin flushing bright red, like a sunburn
• Visible and measurable flaking of skin – appears to be ‘snowing’
• Oozing exudate
• Skin cycling between oozing, swelling, burning, and flaking
• Red sleeves (arms/legs become red and inflamed, sparing palms/soles)
• Thermoregulation altered (feeling too cold or too hot)
• Hypersensitivity of the skin to water, movement, moisturizer, fabrics, temperature, etc.
• Nerve pain, sometimes described as “sparklers” or “zingers”
• Enlarged lymph nodes
• Edema
• Eye dryness and irritation
• Skin atrophy (elephant skin)
• Hair loss on the head and/or body
• Insomnia and altered body clock
• Appetite changes
• Fatigue
• Emotional fluctuations, depression, anxiety

I am thankful that my symptoms have not been so bad that I had to quit work, as many are rendered bedridden by this or live for months in the bathtub. But some days I still struggle a great deal. Please pray that I can heal soon, or at least be given the strengh to keep battling through this.

My husband and I are going to be moving into a new house in a couple of months should our mortgage go as planned, so I need a lot of strength to keep going.

At 39, life was supposed to be moving forward. At the moment, I am not optimistic that we will have kids, as I have been kicked in the face by health problems much of my life. Sometimes I wonder if that is my only intended purpose in life -- to just sit and suffer. Which is what it is, but at the moment I feel no joy or consolation with it.