Now that my postcards are done (37! And the majority or work including stickering done by me! Me! Me! Me! – the one that just had a three hour nap!), I want to talk about the change in seasons and one of my conditions: Secondary Raynaud’s. (I usually spell it Reynaud’s but hey, not perfect).
Raynaud’s can be Primary and Secondary; and it turns out there are lots and lots of causes, including Anorexia. However I was Anorexic off and on for 13 years and never got it. I did however get it through MSA. A lot of my friends have it through Lupus. It effects your extremities, or should, and here is a nice picture a guy put up recently to show the various flavors or progressions of Raynaud’s (subject 25 years old).
One temporary cure for Reynaud’s: pregnancy, which causes increased surface flow. One woman where I play badminton has Primary Reynaud’s on her thighs but not her feet or hands. Go figure. As you may have guessed from the pictures, it is an exaggeration of the vagomotor response to cold or stress creating hypoxia (oxygen deprivation). He seems to have it in his fingers, but not as much in his hands. Some people have hands, some go the EXTRA mile!
The thing for people with primary Raynaud’s is to avoid triggers like emotional stress, cold or vibration (apparently people on jackhammers will have their hands turn black due to this if they have Raynaud's; this happens to me on days when I am tired in about 120-150 seconds from the vibration of TYPING!). Ironically, you can say, “Avoid emotional stress” or even “Cold” but unless you have a condo in Arizona or a lot of good drugs, not going to happen. Also smoking is a cause (COPD anyone) because the less oxygen that gets to your extremities, the more funny colors they turn. This is a major problem for me because COPD people seem to be the number one people on oxygen with extreme secondary Raynaud’s (like blue fingers and needing to be on oxygen all the time). I do not have COPD, I just have an autonomic system which is supposed to convert oxygen in my lungs but sometimes 'forgets'. This means I have different needs for my oxgygen converter (we are just waiting on Blue Cross now to approve the new MSA friendly oxygen converter instead of the previous COPD friendly (and loud!) converter they had approved.
First while 10% of people with COPD DO NOT SMOKE (how hell their life is, everyone assuming and blaming them for 'doing this to yourself!'), smoking is still the number 1 cause of COPD. With COPD the inflammation of the lung tubes has DESTROYED the upper parts of their lung tissue (the alveoli) which can no longer convert oxygen, and they need to have higher concentrations of oxygen to get to parts of the lungs where the tissue is not inflammed and where it can convert. Ironically many smokers with COPD will continue to smoke.
White finger Raynaud’s is also known as FROSTBITE. Your finger will turn white/yellow then white and you need to put it in warm water. For reasons I don’t understand yet, my circulation is VERY compromised by the degeneration of my vascular system.
This is how compromised: I get green hands (blood rises to surface but can't sweat) which bleed internally at 24 degrees to 26 degrees Celsius (75-78 degrees Fahrenheit) and is the start of heat stroke. But I also get frostbite at 14-16 degrees Celsius (58 to 61 degrees), yup, WAY above freezing, or even at warmer temps when exercising outdoors (I guess the air flow increases the cooling effect). The difficult is convincing people, like first aid newbies at end of a race that you have three fingers on one hand and two on the other with progression into the second stage of frostbite (from ‘frostnip’) during a sunny day in the low 70’s. I also getting severe frostbite simply sitting still in some houses, depending. Can’t say why. But spend a lot of time with hands of warm water. Yes, I AM the Palmolive Commercial!
Back to Raynaud’s, it is more common in women than men and affects 5% of population, however only a smaller percentage are NOT related to cold. When hands get cold, the arteries move blood to the surface to prevent loss however “this normal body response is intensified by the sudden spasmodic contractions of the small blood vessels (arterioles) that supply blood to the fingers and toes. The arteries of the fingers and toes may also collapse.” The ‘attack’ goes usually through three stages, white, blue and then red. It says it may last to several hours. However, for someone like me with Secondary Raynaud’s, make that “all waking hours” and change white to ‘mottled back of hands spreading up as tired to shoulders’ (indicates a loss of vascular control)
Number one cause of secondary Raynauds is Connective Tissue Disease, according the Medical College of Wisc. I am guessing that EDS is one of those ‘Connective Tissue Diseases’? It also shows up in 1/3rd of people with Lupus. Some of the ‘associated’ medical problems with secondary Raynaud’s? “Painful ulcers and gangrene are fairly common” – also people with Raynaud's with connective tissue disorders may have problems swallowing. Wow, gangrene is COMMON? Sounds fun.
“But Beth, I’m bored! So much medical talk!” Okay, fine, having the arteries in your hands and feet collapse and then turn gangrene inside of you isn’t enough huh? Well, basically the solution is to….wait for it…keep warm. (unless you can’t sweat and are heat intolerant!). Seriously, this is where Socks come in. Because as Linda says, “Them parts you don’t feel won’t be your parts all the time if you don’t take care of them!” Due to nerve loss and Raynauds, I have the same problems as individuals with diabetes as diabetes (which causes 15 times the risk of lower limb amputation) creates peripheral neuropathy (CHECK!) and vascular disease (CHECK!) – so ulceration, which can be unfelt turns to gangrene and hey, off comes a toe...if you checked recently, otherwise...think higher! By the way, amputation is considered BAD.
Another problem (which doesn't make keeping my toes any easier) is that with Raynaud’s, particularly secondary Raynaud’s, your hands and feet (or in my case my forearms as well) simply don’t heal. I have unhealed knuckle injuries from August 1st and when I jammed a finger in boxing, that took over three months for the internal injury to even come close to normal. So what to do? I don’t know. I know one person that uses superglue to close up the injuries as they occur. However, for people with Raynaud's over time scarring can occur on the tips of fingers and toes.
What they don’t mention is, if you have no blood flow, particularly to your feet, the toenails fall off, or loosen. I myself, what toenails I have, have not cut them since April I think. If the blood doesn’t get down there, how is the calcium supposed to? I am guessing this will probably, over time, make the small bones on the toes have less density too (that is only a guess).
For me another problem of the Raynaud’s is getting a oxygen meter reading. The more fatigued I get through seizures or heart problem, the more likely my fingers or hands will be blue or purple or black. Oxygen meters like the hospital use are generally used on the finger (though I have heard there is one for the ear - no, not a pun or joke). Of course, after the 10th time the nurse comes over because I am registering NO OXYGEN, they just turn the alarm off. Hey, no blood to the extremities, means no oxygen either. Besides the issue of gangrene, for me, since Raynaud’s is supposed to be limited to the hands and is not for me, it progresses up the arms, all the way to the shoulders. That indicates that there is vascular instability and potential hypoxia (oxygen insufficiency) through-out the whole limb. And since the shoulder also happens to be where the major blood flow to the brain is, I try to keep my Raynaud’s at about the level just above the elbow, no further (or my brain get less oxygen...this is considered VERY bad for brains.... unless running for public office).
Whether you have Raynaud’s or not, many people with disabilities have what I have noticed is a “intense sock fascination” (sock fetish anyone?), because whether a para or a quadriplegic, diabetic or another form of peripheral neuropathy, keeping your feet warm is important. And while you CAN do it in your grandma’s socks which would match your outfit if it was Puce with Yellow and Orange, many instead go to the Mecca. Yes, I speak of Sock Dreams.
Now whether you are giving in to a bit of whimsy (and sexy) around the house, or going with the preservation of each and every toe, Sock Dream has your answers. And for those women like me who have size 11 or above, Tall Girl out of the US or Long Tall Sally in the UK offer long footed, functional winter sock wear. The thing about Sock Dreams is that you don’t have to stop being goth or even funky as you have a selection from Sea Turtles (????) to BATS! And of course, there is no reason not to keep going with your fetish wear if you want to have a Alice in Wonderland with a bit of naughty to your Mary Janes (I’m talking socks and shoes people, stop dem imaginations!).
I do like the lace with velvet bow mid calf slouch socks but the women’s only go to 10 – which drives me over to the 'mens' section. And quite honestly, showing off socks with super hairy legs is NOT the way to sell to me (oh another feature of Raynaud’s is that since you have diminished blood flow, the leg hair at your ankles and then working all the way up simply DIE and disappear! Were you ashamed of dark hairs on your upper knuckles…worry no more, as that is GONE, along with a fingernail and instead you have a dark sore that won’t go away….that is if you live where it is WARM. If you live where it is COLD then things REALLY get interesting – come on people, cough up the Raynaud’s stories!). But I can still stay goth with these Spider Socks in size 11. However, since I have a phobia of spiders, the periodic flipping out and dropping heavy objects on my feet to kill the spiders I see there is a big drawback to this sock!
The difficulty is that my feet have so much vascular degeneration that I need very thick socks. Plus I need a blanket or two because a) losing 60+ pounds so not any fat b) Don’t feel them except an ache sometimes which feels like daggers stuck in my joints and c) I bleed almost constantly into my feet from my screwed up arteries. On the other hand, so far…no gangrene. I sometimes get pissed at new night care workers who don’t want to tuck in my feet and then tuck in the extra blanket just for the feet, so I ask them to instead sniff around there to see if any gangrene has set in. Suddenly tucking in blankets don’t seem like such a chore. Yeah, one or the other, get the picture care workers?
So, if you can’t talk about Raynaud’s, surely you must have some favorite socks. And of course, how could I talk about socks without mentioning the “loose socks” of Japanese schoolgirls (or one SLIGHTLY older Japanese obsessed anime hair girl in Victoria). Problem is that they are often confused with “leg warmers” of the ala 80’s comeback (which must make genuine dancers want to hit women posing around in them over the head). I also like some ones with red skulls on them (and these “black widow” ones, fit my personality!). But they are often too thin so I wear them over other socks. Or my care worker help me put them on (add big foot full o blood and poor digit control and end up with need for a little assistance!).
I would like to get further examples of secondary Raynaud’s as so far no one, including the people at the hospital have seen it progress so far AWAY from the hands, like up to the bicep or shouler. But then people haven’t seen my version of Multiple System Atrophy either. But still, like to know I’m not alone (be that Raynauds OR sock fetish!).
11 hours ago