Invisible and NOT-SO Invisible Illness

Have you ever seen someone who has a really bad headache? I mean, the kind you can just look at and tell they are in pain. They may try to hide it, but it dulls their eyes. It wrinkles the forehead a bit. It makes sounds louder and lights brighter. It can be consuming.

Well, I don't have a headache, but my hips are driving me crazy. Going to the fair and walking that much was probably one of the dumbest things I've done in life...But I so didn't want to miss out on watching my little one having so much fun!

I have myasthenia gravis, but I'm not always in severe pain. With the fibromyalgia, that actually causes more pain, but it's usually when Jacob climbs on me or I bump into things. You should see my legs from the knees down....They are worse than Jacob's! So many bruises! There is some pain associated with the trach, but not chronic. This hip pain is chronic. People who live with pain like this all the time...I just can't imagine. Chronic pain is a jealous thing. It vies for attention from anyone or anything else in your life. I'm so crabby. I snap at Jacob, which I NEVER do. The voice coming out of my mouth just doesn't sound like me...it sounds like a grumpy, tired, mean old lady. It makes me want to weep for my son. He doesn't deserve this.

Then there's the stress of the upcoming MRI which hasn't been scheduled yet. Waiting to hear back from my neurologist...he is a terrific doctor that I would recommend to anyone, but his "getting back to you" skills are well, less than desirable. Especially for someone as patient as I am... (yah, I hear ya laughing....)

I KNOW the Lord has big plans for me, for my family, for my son...I just sometimes wish it didn't include so much pain. I could handle it if it didn't effect my husband and son...if it was just me. But unfortunately, we don't live in bubbles (although a nice germ-free plastic bubble would suit me just fine!). Our actions always effect someone else.

However, when all is said and done, I say with Job: "I KNOW that my Redeemer lives!"

Fair/Beginning of Invisible Illness Week

Yesterday was a big day! Doug and Jacob and I went to the Allegan County Fair. Doug’s work has a picnic at the fair every year. Last year Jacob was still a bit too small for rides, etc. He was still in the stroller most of the time, and not terribly interested in much.

Oh, what a year can do.

The child is fearless. He went on the HUGE Ferris wheel with Doug. He was WAY more excited than Doug was, for sure. He kept saying, “I want to go on the Ferris wheel!” the second we told him we were going to the fair. So they did, and he loved it.

He also rode all the little kiddy rides, much to my germophobic chagrin. I went through a LOT of wipes! I really can’t think about how many disgusting things could be one those rides, or my child would never leave the house without his protective bubble. Doug and Jacob went in the spinning apple thing, and there was another little kid in there that wanted to spin. Shocker of all shockers, he actually ASKED Doug if it was okay to spin with Jacob in there. (Kudos to those parents, wherever they are!) So they went really slow, and my son is like "faster, faster!!" Anyway, he had a WONDERFUL time. Doug, on the other hand, was a bit sweaty and more than a bit green when he got done. : )

Today kicks off the beginning of Invisible Illness Awareness Week. Yesterday at the fair, I wasn’t sure if I wanted my illness to be more invisible than it was at the time…. I mean, I always have the trach, so mine is more visible than some, but most people just assume that I had throat cancer (at the ripe old age of 29 when I first got the trach??), and that I’m fine now, because I look okay. I don’t go out in public when I’m doing really bad unless I go to the hospital or doctor or something. So when I"m out, my hair is done, my make up is one, etc.

Yesterday, however, at the fair, I was walking with a cane. I’ve been having hip pain, as most of you know. I have to call later this morning about an MRI. They are still looking at avascular necrosis. No fun. So I have a cane, a trach, I’m limping, and it was horrible. I almost think I’d rather have people make assumptions. I was very self-conscious, which I suppose is my own issue. And even though in the shade it was fine, in the sun (where we were most of the time) it was HOT. I got in the car and just bawled. Then I got home and bawled some more.

It’s SO frustrating dealing with a chronic illness on days like that. I just want to be normal and walk around with my husband and child and ENJOY a day at the fair. I guess part of me was just feeling sorry for myself because I was hot and tired, and it’s easier to fall prey to the “if only’s.”

And I have to admit, I’m freaked out about this avascular necrosis (AVN). I mean, I know I can’t change anything by worrying, and I’m MUCH better than I used to be, but I just do NOT want to deal with this. Enough already.

Christian Illness Ministry Sponsors 5-Day Virtual Conference Online

SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.

In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio on their computer. Please join us! Everything will kick off Monday morning at 9 a.m. pacific time.

Go to www.blogtalkradio.com/invisibleillnessconf and turn up your speakers! That's all there is to it! Here is the schedule:

SEPT 14
MONDAY - 9 AM Understanding How we Uniquely Deal with Difficulties in Life Georgia Shaffer
MONDAY - 12 PM Finding Health Insurance Coverage with a Pre-existing Condition Jennifer Jaff
MONDAY - 3 PM Super Foods for Super-Natural Health Joanna Faillace
MONDAY - 5:30 PM Hearts of Gratitude and Joy Maureen Pratt

SEPT 15
TUESDAY 9 AM Coping with Chronic Illness in Your Marriage Bill & Pam Farrell
TUESDAY 12 PM Coping with Crises on Top of Chronic Jennifer Saake & Lisa Copen
TUESDAY 3 PM How to Start a Business When You are Chronically Ill Kirsten Borrink TUESDAY 5:30 PM Top to Be Announced Kelly Rouba

SEPT 16
WEDNESDAY 9 AM It’s OK to say NO: Building Healthy Boundaries Jenni Prokopy WEDNESDAY 12 PM Parenting When You are Chronically Ill - Chaos and Confessions Dena Dyer, talking with Lisa Copen
WEDNESDAY 3 PM Simplifying Your Home and Housework Marcia Ramsland
WEDNESDAY 5:30 PM Real Talk About Men and Chronic Illness Jeff Kenyon

SEPT 17
THURSDAY 9 AM Find the Job You Desire and Can Do Rosalind Joffe
THURSDAY 12 PM When Your Child is Chronically Ill Jolene Philo
THURSDAY 3 PM Managing College with a Chronic Illness Lynn Royster
THURSDAY 5:30 PM Helping Others Understand Your Pain Karen Richards

SEPT 18
FRIDAY 9 AM Applying and Winning Disability Assistance When You Are Chronically Ill Scott Davis
FRIDAY 12 PM Being a Teenager with a Chronic Illness Naomi Kingery
FRIDAY 3 PM Surgery Preparation Curtis Dean Hall
FRIDAY 5:30 PM Closing workshop Lisa Copen and guests

Update from today

Hey all,



Well, today was pretty horrible. We had "access" problems. Meaning vein and needle problems. The one vein in my left arm that was ALWAYS cooperative wasn't even playing nice. It hurts sometimes during the treatment, kind of like a bad ache. If I'm running well I just suck it up and carry on. But today. Ug. The left arm took 3 times. They ran the machine each time and they worked for like 2 minutes. Then it's mess with the needles, try to get the "sweet spot", then yank it out cuz it's not working.



They finally ended up in my hand, but had to use a super small needle, so I was running really slow. The hand was burning, and my "good" arm was hurting more than usual. After almost 90 minutes there, 45 of actual treatment running, I was only 1/3 done. I was like "Stop." I couldn't take the pain in my arm anymore, and it would have been probably 2 more hours. No way Jose.



So I have to go back next Friday for more pheresis since this didn't really do much.



Dr. Teener came in and talked to me about the MRI, and said I could probably do the open one...it has less pixels, but for this particular thing should be fine. Only trouble is it takes longer, and I can't breathe when I lay flat because of the MG. I sleep with a wedge and 3 pillows at night. SO...if they can't prop me up a little, I will have to be sedated, in which case I will be going to Ann Arbor so I'm right there if anything happens. That will probably be an overnight trip and a treatment then the next day. Told me to double my pain meds because they aren't really working. If THAT doesn't work, we'll have to go heavy duty drugs, which I'm not crazy about. I don't want to be loopy taking care of Jacob.



Finished my stellar day at Walgreens buying a cane to help me walk. Ain't life grand.

Hey all,

Well, today was pretty horrible. We had "access" problems. Meaning vein and needle problems. The one vein in my left arm that was ALWAYS cooperative wasn't even playing nice. It hurts sometimes during the treatment, kind of like a bad ache. If I'm running well I just suck it up and carry on. But today. Ug. The left arm took 3 times. They ran the machine each time and they worked for like 2 minutes. Then it's mess with the needles, try to get the "sweet spot", then yank it out cuz it's not working.

They finally ended up in my hand, but had to use a super small needle, so I was running really slow. The hand was burning, and my "good" arm was hurting more than usual. After almost 90 minutes there, 45 of actual treatment running, I was only 1/3 done. I was like "Stop." I couldn't take the pain in my arm anymore, and it would have been probably 2 more hours. No way Jose.

So I have to go back next Friday for more pheresis since this didn't really do much.

Dr. Teener came in and talked to me about the MRI, and said I could probably do the open one...it has less pixels, but for this particular thing should be fine. Only trouble is it takes longer, and I can't breathe when I lay flat because of the MG. I sleep with a wedge and 3 pillows at night. SO...if they can't prop me up a little, I will have to be sedated, in which case I will be going to Ann Arbor so I'm right there if anything happens. That will probably be an overnight trip and a treatment then the next day. Told me to double my pain meds because they aren't really working. If THAT doesn't work, we'll have to go heavy duty drugs, which I'm not crazy about. I don't want to be loopy taking care of Jacob.

Finished my stellar day at Walgreens buying a cane to help me walk. Ain't life grand.

Ann Arbor Today

Quick update:

Going to Ann Arbor today for plasmapheresis...finally got a hold of the neuro's nurse, and they called in some pain medication for my hips. They are getting worse again. Dr. Teener will come up to the pheresis lab while I am getting my treatment and talk about getting an MRI. All the pain I'm having could be the beginnings of this avascular necrosis and the only way to rule it out 100% is an MRI. I'm praying I can get it done anywhere because Grand Rapids has an open MRI, and I wouldn't have to be sedated. We all know what happened last time I was sedated in an MRI....

Please keep Doug and I in your prayers today.
Thanks!

Hips, Clips, and Flips

My hips hurt. Badly. I'm limping. I'm going to call my neurologist every hour until he calls me back. I don't know what his deal is, because he's an awesome doc. Otherwise when we go to Ann Arbor tomorrow I'll go camp out on his doorstep.

Yesterday was, well, intersting. It started WONDERFULLY. Got up, spent come quality cuddle time with Jacob, breakfast, computer stuff, got ready, went to lunch with two awesome friends. Even saw my gorgeous hubby there (at lunch) and said hi. Time went WAAAAY too fast, so I was on the way to my haircut. This would be the clip.

First of all, I will NEVER get all this color done again. It took FOUR HOURS for color and cut. First, she chopped off over 6 inches (it's too short in the back, but what can you do?) Then colored it almost black. So color, process, then wash, condition, rinse. My bangs didn't take. So we re-did them. Color, process, wash, condition, rinse. Now on the the bleaching of the parts I want colored purple. Yes, purple. Bleach, process (under heat this time), wash, condition, rinse. My hair had never been so clean. Then the purple. Color, process, skip straight to condition, rinse. OH...I forgot the blowdrying step in between each color, because the hair had to be dry to color. FINALLY, the flat iron and style. (I'm not saying any of this was the sylists's fault or anything, it just takes that long). OH---and I forgot to mention that I had worn pigtails while fishing all day Monday, and had a stripe of extremely sunburned scalp that felt oh-so-good during this entire process.

K, so the color is FABULOUS. My eyes look totally blue, and the purple is perfect. Out in the sun it's like Wa-BAM! but inside it's way more subtle. Very, very cool. Color is PERFECT. So she styles it kind of flipped up on the ends, which I like. After all this time, effort, energy, I'm exhausted. I get in the car, drive home. Jacob comes running up: "Mommy, you look pretty!" Aw...bless that boy! Then my husband walks up. You know the look. When you've done something that he's disgusted with. He just looked at me and slightly shook his head. He hates it. Says it makes me look shorter and "plumper." Great. I'm not posting pictures until I wash and style it myself. I also added a few layers on the sides, because the layers were too long. (This would be the beginning of the flip-out.)

So Doug and I aren't saying much to each other, he's got chores outside, I'm trying to be calm; the prednisone emotions are running rampant, so I'm trying not to maniacally laugh, cry, scream, rage and break things all at once. Nice, eh?

We finally get to bed, and I need a new part for my suction machine upstairs. I look in the closet where most of my supplies are, and I can't find it. But of course, before I reach the bag that's 3 feet over my head, I drop a wooden book end on my big toe. I'm not sure what came out, but I'm pretty sure it wasn't "Thank you Jesus." So now I'm not just limping, I'm kinda waddling, because my left foot is half broken, and my right hip feels like it's about to go out. And my husband hates my hair.

Woot! Woot! I get in bed, trying not to bawl, and of course can't sleep right away. Finally fell asleep, and slept pretty well until about 7. Yee ha.

So yeah, when I figure out how to style my hair, I'll post a pic. Until then, use your imagination.