Saturday, May 16, 2009

I have Lupus......Lupus doesn't have me!!!

To all my facebook friends,
In an effort to answer your questions and not bog down Facebook, I am bringing it to my blog.
To be honest, I am in a much better place now than I have been in years. Not sure what is happening but my body is settling down and the pain is now minimal. This is huge.
In 1997, I was diagnosed with Lupus. The journey this disease has taken me on has never been easy and some days darn near impossible. Then the doctors and the drugs, the cure is sometimes harder than the disease. Drugs to kill my immune system, drugs to boost my adreneline, drugs to bring down the inflammation, drugs to elevate my mood so I will have a high pain tolerence and then the narcotics for pain because somehow Tylenol ceased to work.
4 years into the disease I was deemed disabled and my world just kept going on. The lupus caused inflammation in my veins, vasculitis which would make blood vessels pop and I would bleed out, caused inflammation in my nerves......neuropathy which is an excruciating pain in my legs. It left me unable to walk somedays.
The reality of killing my white blood cells left me open to various infections and the lupus attacked my lungs and kidneys.
To say it has been a rough ride would be an understatement. Epideral steroid shots were a God send and I know He has brought me through many valleys with this illness.
Last October, bloodwork showed that my Vitamin D level was dangerously low due to long term steroid use. I could sneeze and break a rib. I have officially broke everyone of my ribs throughout the past 6 years. Actually broke 3 in one shot, that is a record I don't care to beat. Anyhow, while getting ready for bed a felt a sharp pain in my foot and I broke my heal. No other damage just a broken heal. 15 weeks of cast and boot, it finally healed. I can do it again without any provocation, so I have to be very careful. Blood work this week showed Vitamin D is still low, it needs to still get higher.
With the broken heal, I finally hit a wall and pleaded with God for this all to stop. Well He had mercy on me and the neuropathy pain has settled down, I was able to achieve another steriod deduction (need to get off of those) with very little consequence. This is a major miracle.
I wonder sometimes "why me" and then I hear "why not you" God has seen me through many hard times with this darn disease but He has not let go of me. I believe in the power of prayer and know that only with Him by my side will I survive this trial and He will be glorified.
If on Facebook, I ask for prayer or make a comment, you will all know now what is happening and can say a prayer to see me through.
I will say on a positive note this is the best I have felt in 5 years and each day when I wake up I praise God because I do remember how truly bad it was.
Thank you all my friends for caring and for praying
Love and Hugs

1 comment:

Debbie said...

Hi Faye,

You know you are always in my prayers. What ever you need, you just have to ask!

Love you my friend