Happy feet

I joined a small Mom's group through my church this fall. I say it's small now, but with 5 out of 7 women with child, we are scheduled to grow. These delightful ladies have suggested I could join them in the procreative fun--they don't want me to feel left out come spring--so I reassured them that I would be just fine. No really. Me and my mister are done with making babies. I'll just admire theirs.

As we settled down for our bible study, I thought the room seemed cold . Then I felt a slight breeze coming through the window, because IT WAS OPEN. It occurred to me that I was surrounded by prego mamas, warmed by an increased blood flow and girly hormones. I have Raynaud's, like my Mom before me. My circulation doesn't work correctly, so when I get cold or chilled, the blood essentially stops flowing to my feet and hands. (It is a painful spasm that slows the blood flow.) When I first saw the rheumatologist, Dr. Bong (his real name), applied mineral oil to my cuticles and examined the blood vessels in my fingers. (And here I thought I was going to get a manicure.) I guess I am in the beginning stages, where the capillaries start to turn away from the tips of my fingers. Though rare, the lack of blood flow can cause gangrene, so it is important to keep warm.

Last winter, my Mom and Dad gave me a wonderful electric throw. I used it nearly every day for 6 months. My kids love to snuggle in my 'magic' blanket. It's a great investment. I am searching for better socks (I usually wear several pairs with slippers in the house). I am considering getting a pair of "Warm Me Ups", although it will be tough to do anything with them on. I am a big fan of thermal underwear, the new sleeker kind. I will start taking Verapamil soon, which is also helpful in the prevention of cluster headaches. (If some cheesy marketing company were to produce a commercial for this drug, it would warn you that it can cause constipation and light-headedness. I've found this to be true, but sometimes a necessary evil.)

So, I guess I will be an oddball when I bring mittens and a woobie next week. Well, for a little while anyway. I'll soon fit right in with the babies.

Take a hike

Lex and Zack
Originally uploaded by mama.milton.

This week has been full of ups and downs. Wednesday my neuropathy flared; my hands and feet burned and tingled. I cancelled my plans to attend a First Aid class with Lexi's Girl Scout leader. I was miserable. By the next day, I felt much better and roughhoused with Zack and my 3 1/2 year old nephew, Austin during my sister's birthday party. Such has been my experience with Sjogrens--I can't predict my symptoms or their severity on any given day.

Today the pain and stiffness came back. My joint filled with gum, I made my way home from church and plopped down into my big, cozy chair. I cried, although I am not sure why exactly. I have been in more pain and certainly weaker. Maybe this is an emotional component. I am not sure. I took a short nap and decided to proceed with my plans to take the kids on a short hike around Lacamas Lake. The sunny days are limited; I will have small children for only a short while. I get the impression the pain will be there for me another day.

Sjogren's Walkabout

Just found this on Chronic Babe:

http://www.chronicbabe.com/bits/archive/2006/10/do_the_sjogrens.php

Hopefully national events, like this one, will promote more awareness about this most common of autoimmune diseases that so few people know about.

Now it's time for Neti

It's the fifth day of my cold and I am feeling pretty good. I am particularly glad I am on my feet today as I am chaperoning for my son's kindergarten class trip to a pumpkin patch. I love pumpkin patches and will find anyway to purvey my favorite gourd, even if it means riding a bus with 5 year olds.

I thought I would pass on one of my strategies for avoiding sinus infections. It's a little gross, but effective. Well, at least it works for me sometimes.

I use a neti pot. It's this little teapot looking thing. I place warm, pure saline water into my neti and flush out my nose. Here's the part that scared me at first--I pour water into one nostril and it exits out of its twin. I was certain this would cause me to drown, but if I breathe through my mouth, I am fine. Neti pots provide much needed moisture to the nasal passages and clean goop out. And if you do get a sinus infection, it actually feels good.

I watched an episode of The Office recently, the Christmas party one where Dwight gets the teapot intended for Pam and sees its neti-potential. Now when I neti, I can't help thinking 'I am Dwight'.

They say it's common

I have a cold. A plain, boring cold. I used to pop OTC cold meds to get through the day, like everybody else. But since the root of Sjogren's syndrome and its unpleasantries, is dryness, I am avoiding taking something that will further dry me out. I tried taking dayquil for the first few days of my last cold, and I ended up with more nerve pain and it took my eyes days to recover.

I am trying something new this time--I am taking nothing for my cold and resting. I didn't have anything planned, besides writing, yesterday afternoon, so I took a big, slobber-on-the-pillow nap. Like a baby. With a snotty nose.

I am hoping that giving up some primetime will afford me a quicker recovery. The pattern has been: a cold, followed by a sinus infection and cycle of cluster headaches. Which fills me with dread. And if I do the math, by the time I recover, one of my kids is bound to have another cold.

So, I will wash my hands, drink my tea and dream of better days.

In case of emergency

My Grandma was found in her driveway Tuesday, hunched over a cardboard box. She apparently had collapsed sometime in the afternoon, laying there, alone. When some friends from out-of-town arrived, it was clear she was confused, not able to speak in full sentences. She owns a dog kennel, and works harder than most people half her 75 years--although she told the doctors in the ER she is retired. After three days in the hospital she is on her way home, with no diagnosis or instructions. It could have been what they call a 'mini-stroke'. We just don't know.

Here lies the dilemma--what now? My Grandmas lives alone, if you don't count the dozens of dogs in her charge and the dogs she boards. She owns a public business with enough traffic that she has many friends, but there are slow days and she is isolated in her rural home of 35 years. She doesn't answer her phone at times; she's busy. She has severe asthma, but mows her lawn despite heat or smog advisories for the elderly or those with lung disease. She doesn't think she is either. She is stubborn. She is strong willed. I want to respect my Grandma's feelings and her passion for her lifestyle. I know it must be hard to face growing old. But what would have happened if no one came down the driveway that day? And is it fair to her family when she refuses to make plans to reduce her workload, or write out a contingency plan if she is unable to care for her dogs? I don't know.

But it's got me thinking. If I have a medical emergency, there are immediate concerns that have to be dealt with--namely my kids. So I am considering what I need to do to make a difficult situation better, just in case. I know the kids' schedules and all the pertinent phone numbers, when the bus comes and when homework is due. If I was sick and needed care, having instructions available may make me feel less worried and put my friends and family at ease. Somehow we made it through emergencies over the past year, but by the seat of our pants. I don't plan on living a little life because I could get sick. But, reality demands I take responsibility for my lush life, that my eyes are open.

One year later

Do you know where you were last year at this time, this week? I know exactly where I was all week in 2005. I was parked, lying down, on my gushy green couch, experiencing what is known as a spinal headache. I know a lot about headaches. I'm familiar with migraines, SUNCT, tension and cluster headaches; I am versed in describing the what, how and where of head pain. Spinal headaches, it turns out, made my whole head and neck hurt. Apparently, my stomach felt left out, so I threw up too. Not a great time. But I had to marvel at one of its defining traits-- I could find relief by laying down. This was great news when the kids were at school, but a real bummer during carpool.

This is also the only headache I know of with a distinct cause and possible cure. The headache came at the hands of an inexperienced doctor, performing their first spinal tap in the ER. I signed a release form, and consented to being his guinea pig because I was ill and didn't know any better. Of course, I watch enough Grey's Anatomy to know all doctors have to start somewhere, but I've done my duty and will be much more selective about who pokes needles into my spine. When things go well, there's one stab and the patient lies on their back to allow a clot to form around the hole in the spinal cord, so you don't leak spinal fluid. In my case, several holes were made by the intern before the doctor in charge took over and got the sample they needed. I didn't find out why my arms were too weak to hold a blow dryer, or why it hurt to breathe that day, but at least the doctors that day were confident I didn't have GB or MS.

So I spent the next few days on my couch. I read compulsively, so I wasn't bored, just worried about taking care of my family. I waited for the headache to resolve. It didn't.

When I saw my new neurologist later that week, I explained to him I would have to lay down during my appointment. It was my strategy for that week. I would walk as fast as I could to the bathroom or to feed the kids before laying down, wherever I could. I realized this was getting ridiculous. I watched my son's first soccer game laying down on the bleachers. I reclined my seat at red lights. Clearly, I needed help-- I just had enough experience with other headaches to know that sometimes there isn't much you can do to fix it. Of course, the neuro knew better.

'Would you like me to fix that?'

'Yes, please.'

A headache that can be fixed, well imagine that. That's when I heard of a blood patch. It's exactly what it sounds like. The doctor pumped blood right into the area where the LP took place. For the next 24 hours, I had to remain flat on my back, while it took. But the relief was immediate. And I haven't looked as rested before or since.