Friday, February 8, 2013


The recent  changes in my Lupus symptoms, I have to say are downright irritating and annoying. 

This past summer I was able to shed quite a bit of weight to help with caring for myself.  Under my Dr. supervision, I started running and even got myself up to the distance of 10miles. Then winter hit and I found myself unable to cope with the dip in temperatures.  Anyone who knows me knows that I have never been a fan of socks and slippers, but now I cannot do without both. My feet turn white and purplish if I do not have on either two pairs of socks with slippers over top. I have invested in wool and fleece socks for the first time in the history of my life. It's not only my feet that are affected, my hands go numb easily and also turn white. I also am now the owner of fleece pj's and go to bed wearing socks with them. 

My toes in particular have been affected for the worse. If I do not wear my millions of layers, I noticed that I started to get purple dots on them. They also are MUCH more sensitive than they used to be. Stubbing a toe  isn't pleasant in the first place but I was usually over it in about a minute. Now, it's as though my toe has broken. I spend the good part of five minutes rubbing and soothing my throbbing digit. It's not pleasant. At my most recent visit to my Dr, I pointed out my mysterious dots. He sighed and stated that this is a common symptom with Lupus and Reyes syndromes. It has an old name "Chillbains" or "Chilblains".  But it is basically cold blisters that form on the feet due to poor circulation. There isn't a treatment just for it, other than keeping your toes warm.  It can lead to nerve damage and eventually amputation if not taken care of properly. Hooray. I was prescribed a high blood pressure medication to help open my blood vessels up to help with the poor circulation. I also inquired if there was a vitamin I could take to help with it that I could try first. Since I have always had low blood pressure, the idea of taking high blood pressure medicine makes me nervous.  I have added L-Carnitine to my vitamin regimen and am waiting patiently to see if it is going to help. I have also been drinking Licorice Root Tea and Burdock Root Tea in the hopes of something working. 
Heavy medications make me nervous for all sorts of reasons and they are all listed in the Side-effects.  Most of the ones prescribed for Lupus patients have "may be linked to some forms of cancer" and "stroke or heart attack" in the listing. No thanks, don't feel like dancing with death today, not while I have small children anyway. 

Then there is my "mask".  I'm not sure if it is linked to my new circulation issues or to my being in the sun a lot over the summer, but I now have a very very apparent Lupus mask that butterflies on my face. It is my diet indicator now. If I have dairy or sugar it puffs out, little tiny pimples appear and it itches like mad. I basically want to rip my own face off. This has made it very hard to wear makeup (not that I was big on it anyway) to hide it a little, even the most natural and sensitive skin brands still cause inflammation and burning.  I have to hunt and bounce between sensitive skin lotions. And I now only use glycerin soap to wash my face with. Anything else dries it out or irritates it making it worse. So, even though I was never much of one for makeup and dressing up, the option is completely gone. I guess that's alright, that takes time and patience that I never really had when I was doing it. There is nothing that I can take that will treat this. Staying out of direct sunlight and wearing sunblock are all the treatments listed. The trouble is, I like to be outside when it's nice and (like with the makeups and skin creams) there isn't a sunblock I have found yet that my face can handle. Since I don't want to be a hermit and live in a dark cave, I will keep hunting and carry on. 

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