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 anything slightly chilly or being annoyed basically make my hands and feet to go numb and cut off all blood flow to my extremities. I am basically allergic to anything that is remotely cold.
Raynaud’s was the first indication that something was wrong with me. It started when I moved to London about 11 years ago. I had never lived in any climate that was that cold, so I was at a bit of a loss about why my fingers seemed to turn white when it was cold outside. And then my toes started to feel numb. It looked very very freaky. No blood at all. Plus it is pretty painful, as you can imagine not having blood to your hands would be.
Over the years I have done my best to cope with it. In the last year in San Francisco it has gotten particularly bad. Probably the damp weather mixed with wind give me an extra chill. I think that main thing that I need to be careful for is not denying my hands of too much blood. When that happens, the skin starts to ulcerate and my nails crack and peel. Fun stuff!
So I bundle up. All the time. I always have a pair of gloves in my pocket and I wear extra layers and scarves + I always always always take a jacket everywhere I go. I also carry around those ski heat packets sometimes and Uggs are my best friends. The doctors have tried a few different medications to make my Raynaud’s better, like beta blockers and even Viagra, but none of them really worked that well and insurance doesn’t cover Viagra (plus it gives me a massive headache), so I’ve taken to staying inside and staying warm as much as possible.
Anyone else out there suffering from Raynaud’s? I would love to hear some of your tips on how you stay warm.
Well, no, I’m not coming out of the closet in that way. I have actually decided to come out of the closet about the fact that I have a chronic disease called Lupus (SLE). This isn’t such a shocker to those that are close to me. I was diagnosed over 10 years ago when I started to get really bad Raynaud’s Phenomenon – a condition where extremities lose blood in cold. But in the past year, I have had my ass handed to me on a platter by this stupid disease. I admit it. I struggle. A lot.
I am finally willing to admit it publicly in an effort to maybe offer some solace for others that are struggling or to educate people about some of the issues and complications that life with lupus causes.
What is Lupus?
Lupus is a chronic aut0-immune disease. In the case of lupus this means that the body turns on itself and instead of anti-bodies that only attack invading tissues, the body ends up attacking good tissue as well. To put it in layman’s terms my body is in a constant battle with itself. You can imagine the strain and stress that one’s body is in trying to fight this fruitless battle on a day to day basis. I guess you can think of it to be something like fighting a neverending cold. It is exhausting – even on good days.
Thankfully in my diagnosis it is not life threatening. There are a lot of people who have organ involvement and I have been spared this. But it is still probably the most challenging thing that I have ever had to face and I am still learning to live with the great mystery of lupus.
So i’ve decided to come clean. I thought it might be theraputic to share some of my stories and perhaps helpful to other people who feel frustrated and alone in this constant battle.