Saturday, June 4, 2011

My Patriotic Feet That I Can't Feel

First I should say, I am completely incapable of painting my own fingers or toes. Since I was allowed to wear nail polish, I've tried every way possible to put it on myself but I just end up with a huge mess of polish all over everything except my nails and if I do manage to get it on my nails, I'll have dinged it all into a mess within 15 minutes anyways. Even if I go and get a manicure, I have to sit under that box thing for about an hour or so until I can make it into my car without needing them to fix some damage I've done. I've never been one of those high maintenance girly girls who have a standing weekly appointment for a mani & pedi, but I did enjoy getting my toes painted up red and LOVED to get some cute little flower art work too.

Today, I can't remember the last time I got a pedicure. That's because I am too embarrassed to have someone work on my feet. I have both Raynaud's & Vasculitis. What's that and what does it have to do with you getting a pedicure? Well:
"Raynaud’s phenomenon is a condition in which the blood vessels in your hands and feet go into spasm, causing restricted blood flow. Lupus-related Raynaud’s usually results from inflammation of nerves or blood vessels and most often happens in cold temperatures, causing the tips of your fingers or toes to turn red, white, or blue. Pain, numbness, or tingling may also occur. If you have Raynaud’s phenomenon try to avoid cold conditions, and, if necessary, wear gloves or mittens and thick socks when in an air-conditioned area."
"Vasculitis is an inflammation of the blood vessels. Inflammation is a condition in which tissue is damaged by blood cells entering the tissues. In inflammatory diseases, these cells are mostly white blood cells. White blood cells circulate and serve as our major defense against infection. Ordinarily, white blood cells destroy bacteria and viruses. However, they can also damage normal tissue if they invade it."
 Together & alone these condition's make my feet look like this on a good day:
My red, white, & blue (patriotic colors at least) feet that I can't feel, my toenails don't get enough blood to grow.

It's more difficult that I thought to get an accurate picture of what my feet look like, this is the best I can manage with or without a flash, but they still don't show what they look like in real life.

The vasculitis effects the whole body in different ways, including the peripheral nerves.

"Peripheral nerve symptoms may include:

  • numbness and tingling (usually in an arm or a leg, or in areas which would be covered by gloves or socks)
  • loss of sensation
  • loss of strength (especially in the feet or hands)." 
I actually often can't feel my feet at all, if I do they are perpetually cold, and I am never without at least one or two pairs of socks on along with warm shoes. I can stick my feet in hot water to help get the blood circulating, but this only last for a short time after I take my feet out of the hot water & I can't exactly carry around a vat of hot water with me. There are boot warmers made for skiing, little packets that you shake up and they warm up for a while, but these are marginally helpful, usually when I'm at home, they are kind of hard to walk around with in your shoes.

Walking when you can't feel your feet is an interesting undertaking. It's even more difficult when they are tingling which can be very painful. I can liken it to when you've been sitting on your feet for a long time and they fall asleep and then begin to wake-up. Take that sensation when it's painful not just tickley and multiply it by about 10-50 depending on how bad it is. Now, you would normally shake your leg cringe through the pain until the blood came back and your foot or feet are "awake" again. Well, that part doesn't happen. So, imagine trying to walk with the sensation you have when you are trying to shake your feet awake.

Needless to say, I am often a bit off kilter when I walk. I think it's easier to walk when they are numb, but trying to navigate curbs, steps, inclines, slippery surfaces, and the like is a challenge. I also have difficulty knowing when I'm injuring myself. I've more than once gotten home & taken off my shoe to find a sock soaked in blood due to some injury or another. I'm very prone to stubbing my toes, running into things, not realizing that when I dropped that heavy block on my foot it was actually a big deal, and the like. I can't walk in straight line, balance one foot, or stay standing with my head back & eyes closed...thus I could never pass a roadside drunk driving test even though I don't drink.

Left untreated, my feet could actually become gangrenous, the tissue would die, and my feet and leg would turn black, likely leading to amputation. Sounds gross and unlikely to happen, but right now these conditions are akin to my legs and more my feet being choked and they can barely breathe but it's not quite enough to actually kill them. Even treated, it hurts like major heck sometimes, makes it hard to walk, requires that I wear special shoes that aren't cute & feminine and certainly don't have a high heel, requires me to keep indoors and in a heated area as much as possible, makes it difficult to go anywhere due to air-conditioning (a constant in Southern California) which sets off bad flares, precludes me from walking long distances (shopping in Walmart is a bit$h), and other things too but this post is long enough. My hands and arms are affected as well & that's actually more of hindrance to my functioning, but that's another post. 

In terms of hiding, this one is visually easy to hide, who pays attention to your feet if you don't draw attention to them. Case in point, my husband was staying over at an apartment I had closer to work, he had brought his clothes for work but when he went to get dressed he realized that he had forgotten his dress shoes. All he had were his black suede sandals, those Birkenstock looking one with the 2 thick straps across that buckle. He dressed in his slacks & shirt and dark socks and put on the dark sandals. They kind of blended because it was black on black, but they were still the cork soled sandals. He actually made it through the whole day at work without anyone noticing his sandals, because people don't look at peoples feet, they look at their face (or any other part of the body they are trying to draw attention to, like cleavage or pretty or crazy hair).

Physically, this is pretty easy to hide. I walk funny sometimes but generally no one is there to notice. I get a shopping cart ALWAYS to have something to hold on to. I will drive from one end of a mall to the other rather than walk & since I have a much needed handicapped placard, I usually get a close parking spot.

Again, you wouldn't look at me & think she has a deadly disease. That's why it's called an "invisible" disease.


  1. I was wondering if you had seen any follow up to this article about the proteins linked to RA?

  2. No I had not caught that original article nor have I seen any follow up. The Kennedy Institute of Rheumatology at Imperial College London's website does seem full of multiple initial finding articles at
    and self congratulatory articles, but I don't see a lot of follow-up information that is leading to actual treatment protocols. The one autoimmune disease I have been able to dodge so far is RA, I am technically RA negative. Lupus information is usually found alongside Arthritis information but I am not knowledgeable on this particular topic. Please let me know if you learn any more. Although I don't know why, I have a feeling that the UK gives researchers more leeway (sp?) in their research & they don't have to go through as much red tape as they do here in the US, but that is just a generalization that I am making without specific evidence to point too...LOL.

  3. burbtbutterfly: ''Physically, this is pretty easy to hide. I walk funny sometimes but generally no one is there to notice. I get a shopping cart ALWAYS to have something to hold on to. I will drive from one end of a mall to the other rather than walk & since I have a much needed handicapped placard, I usually get a close parking spot.

    Again, you wouldn't look at me & think she has a deadly disease. That's why it's called an "invisible" disease.''

    I THOUGHT THAT I WAS THE ONLY ERSON with this embarrasing senstion i never knew other people had it too!