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.

Trying to Live Like Everyone Else and Not Quite Making It-From February 16, 2011

So yesterday (February 15, 2011) I convinced myself I could live a normal day "like everybody else" (we are all a little delusional sometimes).So I got myself together and got dressed and I got "the baby" Victoria (4 months) dressed and looking super cute (everybody looks in a stroller to check out the baby-so I wouldn't want to disappoint, she's so much fun to show off anyway).

I carefully put together her diaper bag/backpack making sure I had enough diapers, wipes, bottles, medicines, creams, pacifiers & clothes for all my "what ifs" and "just in cases"...you know "What if she has a blow out", "What if the car breaks down & we are stuck on the side of the freeway waiting for Triple A", or "What if a rogue tornado hits Santa Clarita and we are stuck in a storm drain for days until finally discovered by an urban rescue dog"...I've got to be prepared, I don't want to run out of diapers or pacifier wipes while we are stuck in the storm drain...I decided I'd better throw in another blanket...Just in case. 

My "small" Ju Ju Be BFF Diaper Bag/Backpack, lightly packed for a 1 hour outing

I opened the garage door and packed everything into my SUV (getting that kick door stop thingy was a brilliant idea if I do say so myself - so the door stays open & I don't have to try and open it while carrying all this stuff let alone the baby). I took several trips to put everything in the car (or the "Beast" as my husband likes to call it): the stroller frame, the diaper bag, my purse after I transferred some necessities to the diaper bag so I didn't have to carry both when out and about (because I can't). I got together the 2 bottles of drinking water and 2 bottles of diet Snapple iced tea or Diet Fruit Punch flavored Kool-Aid that I have to carry with me everywhere (dry mouth, constant thirst, taking medications, and because I'm kinda addicted to the Kool-Aid), made sure I had my sweater or jacket even though it was in the 80's or higher (I have to carry a jacket or sweater everywhere as air conditioning and cold flashes require it or else my Raynaud's can be set off and left cold it could get out of control and very painful). Finally, I put the baby in her travel/car seat, figured out how to click all the latches of the 5 point restraint system, made sure she had her binkie, a clean pink burp cloth tucked in the side of her seat, got her favorite blankie, (Now the worst part) I carried her (in her car seat) out to the car. I managed to lift/hoist her up into the car seat base that is installed in the back seat, I heard all the right clicks (and hoped none of them were my vertebrae breaking or muscle snapping although it kinda felt that way). I double checked all of the above one more time, found my keys again, kicked the door stop up, locked the door, climbed into the SUV's driver side, got myself situated - water bottles in the right place, cell phone accessible, earpiece & bluetooth turned on, seat set at correct length for the shoes was wearing, made sure the Ipod was connected correctly and that it was still at the right place in my Audiobook, managed to get my seat belt fastened, made sure I had my handicapped parking placard, took whatever medication I'd forgotten to take or now need to take after doing all of this "getting ready" stuff, backed out of the garage, & then I sat and waited while I watched the garage door shut all the way. I have to watch the door close all the way, making sure the Boogie Man doesn't run and duck under the closing door at the last minute to hide, laying in wait until I come home. Did I mention I'm a bit obsessive compulsive - that's another discussion - I'll try not to digress.

Once everything was together, I went to a MOMS Club meeting. I dropped by Macy's just to pay my bill (because of course I had forgotten to pay it for so long that it was the last day & even if I paid it online like I wanted to, they still require a lead time of 3 days, so it would be late - come on Macy's this is the Internet age get up to speed, alas I was forced to go to the store to pay my bill so it would be on time). So for the second time that day (first was at MOMS Club meeting) I got out the stroller frame, figured out how to get it open...you know by pushing that big red button that says OPEN...why do they have to make this so hard?, got out the diaper bag, hooked the diaper bag to the stroller handles with my special "Mommy Hook", figured out how to unlatch the car seat from the base, hoisted the baby & car seat out of the Beast and put the car seat with her in it into the stroller frame while listening for the right clicks. I grabbed a big bottle of water and a bottle of iced tea, put my jacket in the bottom basket of the stroller, winced at the pain of bending down and up, made sure my purse was adequately hidden in my car, verified that I had remembered to hang up the handicapped parking placard (you can't drive with it hanging, but GOD forbid you forget to put it up and they ticket you, because it is THE MOST EXPENSIVE parking ticket there is), I smiled at my beautiful baby girl and headed off for the store JUST to pay my bill.

Victoria, Carseat, Diaper Bag, and Extra Quilt

Back to the sale, we are talking $6 pants & $4 shirts at Macy's and who could pass that up? I rationalized that I'd be stupid not to take advantage of such good prices. Moreover, I was sure I had coupons because we have a Macy's card and thus are inundated with coupons and Sale
brochures at least twice a week ($10 off a purchase of $50, $20 off a purchase of $100, and my favorite 20% off all of your purchases all day, pick your own sale day, but read the fine print because it excludes absolutely EVERYTHING you'd want to buy, or rather everything I'D want to buy: make-up, fragrances, Coach, Wacoal, and every other brand name I'd actually want to purchase which are very few because I really don't care about brand names...except for the excluded Coach & Wacoal)...but I digress.

I shop in bulk or at least I try on in bulk. I absolutely hate having to go in and out of a dressing room or worse having the sales lady ask me if I need another size. So I brought in 20-30 or more different things, some were the same item in various sizes (especially because I didn't know what size I wore anymore). I had to try on some items with 3 or 4 of the other items, mix and match you know, I had to see how it looks with everything else to know if it was worth buying. I went into the handicapped dressing room because I had my beautiful baby, stroller, diaper bag, and an entire closet full of clothes to try on. Alas, this "quick" trip to the store turned into a 2 hour or so fashion show for Victoria which included a feeding and diaper change and a cleaning for me too. Thank God for baby wipes and burp clothes to wash, blot and dry myself off....why do I sweat so much when I try on clothes? It's like a waterfall pouring from my brow. (I know, I know, GROSS Huh). I sweat more trying on clothes than I did when I could and would work out for an hour...but I digress.

Eventually, I paid my bill and bought the $6 pants in 4 different colors, a bunch of $4 shirts, some leggings and sweaters or sweater dresses to wear with them, I couldn't figure out which they were but since they were cute and cheap I didn't care. I left Macy's and then had to do the whole getting into the car routine again. Hoist the baby & car seat in, figure out how to close the stroller frame (there is no red CLOSE button, it requires a magical combination of pushing a different button while turning the middle part of the handle and then the frame magically folds up with one of the side metal rails clicking into the clasp with the big red OPEN button on it), I tried to unhook the diaper bag but I had already folded up the stroller so it wouldn't work, had to reopen it, unhook, reclose, etc. etc. etc. finally I managed to get everything all packed up again.

Next, I went to my doctor (still with the baby in tow), my psychologist or my "talk doctor" as my husband and I refer to her since he can't remember the difference between a psychologist (talk doctor) and a psychiatrist (gives you psyche drugs doctor). Yes, I took my baby to my
shrink. I'm sure that people must think I am suffering from post partum depression, not that I've ever seen very many people in the waiting room but in my OCD (Obsessive Compulsive Disordered) mind, I'm certain that every person is watching me carry my baby into the non-descript building that houses all kinds of offices, most of them not medical or psyche related at all, and they are assuming I have post partum depression as opposed to say...visiting my husband at work...that's just the way my mind works on some days - but I digress.

My appointment time is at the baby's nap time so she often just sleeps through the appointment and if not, she's just a really GOOD baby and hangs out smiling at me then smiling at the doctor. I think my doctor is much more interested in Victoria than what I have to say but that's alright with me. I really just need a place to rant and whine and someone to verify that I'm not crazy or validate my suspicions that a particular thought or reaction of mine or someone else's is in fact irrational or inappropriate. That's easier said than done, but she manages to do it and enjoys Victoria smiling at her at the same time. When the appointment ended I again repacked her and everything else back into the car.

Next, I picked up Alexandra (age 4 1/2 years) from school, here again I had to unpack the baby just to go in the door and walk to her class (I fought off the hoard of germ ridden children who were dying to cough and sneeze on poor little Victoria or at least touch her all over with their dirty little hands that haven't been washed through the 5 bathroom trips and the 6 snot wipes they've probably taken that day). I repacked the baby, stroller, and bag etc. I then got Alexandra in which entailed standing precariously on the side foot rail thingy (the name of which escapes me right now), leaning over her, and trying to get the seat belt fastened without being able to see the thing to fasten it into. I finally got it in and then hit my head on the roof of the SUV as I tried to get out of the car. Moreover, my back was killing me from being bent over her without any support. Why can't they make seat belt fastener attachments for people with arthritis, you know like the special can openers or jar openers or grasping helpers? (Note to self- Invention Idea: car seat belt fastener attachment thingies for people with arthritis) - but I digress.

I took Alexandra to buy some tights that she really needed (still with baby in tow) & she decided she wanted to get some shoes too, which she kind of needed. We drove to Payless and went through the whole unpacking baby ritual again. Alexandra can actually unfasten her seat belt herself, Thank God. We found a really cute pair of pink tights and then Alexandra headed to the shoes. Apparently, she has inherited my try on in bulk gene and had to try on 20 pairs of shoes, some the same shoe in different sizes. I think Alexandra's feet actually grew while she was trying on the shoes. After 2 dozen pairs and a number of emotional outbursts including crying, pouting, eye rolling, smiling, pissy face, laughing and the silent treatment. I finally got her to agree that today was just not the right day to find shoes at Payless but that we would look at other stores like Marshall's or TJ Maxx (I meant on a different day of course but failed to voice this out loud).

We left Payless with just the pair of pink tights which is what I intended to get her in the first place. As we walked out the door Alexandra saw the bright lights of Marshall's sparkling from across the giant parking lot, as the sun had gone down while we were in the store. Her face lit up and I could tell there would be yet another stop that I would have to make to avoid a complete child meltdown. But of course, I first had to pack up the baby, the stroller, the diaper bag, go through Alexandra's seat belt fastening torture, and then took more pain medication in desperation. I drove across the parking lot (thought to myself...this is so "LA Story" - the movie, if you haven't seen it, you should, it may be old but it's still totally relevant...I guess LA may change but the people who live there don't change much at all) and found the handicapped spot closest to the door wondering if I was going to make it even that far. I unpacked the baby, stroller etc. etc. etc. and corralled Alexandra to keep her from running in front of moving cars in the dark.

40 minutes to an hour later we left Marshall's with a pair of shoes, a pink and purple, super-soft, sleeping bag/nap bag (I'm not sure why she wanted this as she has a napping bag at school but I was too exhausted to argue and it was only $7, you have to pick your battles), and a Disney Princess themed umbrella which Alexandra insisted she needed so much so that she said she would pay for it with her own money (you know because it rains so much, like maybe 3 or 4 days a year here in Southern California) but she gets to choose what she wants to buy with her hard earned allowance and I explained the pros and cons of yet another umbrella when we already have 6 or so in our umbrellas stand-but I digress.

By the time I got home, I could no longer lift the baby, could barely stand let alone walk, & nearly fell asleep in my dinner plate that hubby was kind enough to make. He had to help/carry me upstairs and get me into my pajamas and into bed at 6:30 PM. I don't remember him kissing me good night, Alexandra coming in and kissing and hugging me good-night, my hubby coming to bed later and reading for a while, his alarm going off the next morning, him getting up, getting dressed & shaved, or hearing the rest of their morning routine, or him and Alexandra kissing me good morning and good-bye before they left for work and school.

I woke up to feed the baby and we both went back to sleep. When we woke up again was when I realized that the rest of my family was gone and I was upset because they didn't give me my morning kisses or even say good-bye. I called my husband to complain and he filled me in on everything I had apparently missed, I had my eyes open and made some responses but I have no recollection of anything at all.

It's 3:30 PM now and I'm still in my PJs, if not for the fact that the maids are coming, I'd still be in bed. Yes, we have maids or rather a maid service that comes once every 3 weeks to clean the house and do all of the things that I can't and a lot of things that I wouldn't do even if I could. It boggles my mind that they can come and make my whole house look nice and clean. Even they can't manage some of the piles, but they make them look more tidy and camouflaged somehow. I hate to be here when they come because I'm totally embarrassed by the state of our clutter especially with the new baby who's things have taken over our family room as that is where I take care of her during the day - but I digress.

I guess I used up all my spoons yesterday and stole some from today as well...just not sure how many days of spoons I used up. It's a good thing Victoria is such a good baby! She even lets me sleep in.

So to all of you out there who HATE a day of running errands, just remember there's some of us, like me:
who think running errands is a TREAT,
who DREAM of being able to do more than one thing every other day,
who WISH that they could plan ahead confident that they'll be able to attend whatever event they've RSVPd "Yes" for,
who would LOVE to not be considered a "flake" because sometimes they're forced to call and cancel things at the last minute because they "over did it" yesterday or 3 or 5 days ago and haven't recovered yet,

who are having a FLARE for no particular reason at all and have no idea how long it will last, or
who would be ECSTATIC to be able to say "Thursday is my day for running errands" and put that on the calendar knowing that it REALLY would be the day they would run errands.

To me running errands is an ACCOMPLISHMENT & one I may have to pay for for a long time afterwards.

That face can make anyone feel like they could do anything!

PS: You may be thinking "spoons?" what the heck is she talking about "spoons"?

At the time I wrote this, I had just read The Spoon Theory written by Christine Miserandino, a woman's attempt to explain to a normal personal what it is like to live with a disability or chronic illness like Lupus. It resonated with me at the time & I became a "spoon head". I still am, but I don't have the spoon Twibbon on my profile picture anymore. People were supposed to ask about the spoon on my head and nobody really did, so I figured I must just look like a strange gal who likes to wear silverware on her head. I wasn't the impression I wanted to make :-)