Tuesday, September 29, 2009

If You Will Only Ask

I just HAD to share this with you all.

I have recently re-connected with a dear friend from college, Tracy. She lives in Florida, and is a teacher. We had all the same education classes together in college. AND, she gave me one of the best recipes I've ever had, one I still use to this day!!! Anywho....

God had recently called Tracy to move out of her sister's house, away from her familiar home neighborhood of St. Pete and move up to Apopka. She got a new teaching job about 2 weeks before school started, and had to move all her things, find a place to live, set up a classroom, all in 2 weeks. Now, if I may say, Tracy is a bit like me....not so crazy about change. For those of you who know me well, imagine if I said "God is leading me to move, and I'm leaving everything familiar to go to the unknown because I know God has plans for me there." YAH. I mean, yes, if God calls, you go, but it was not exactly in her comfort zone!

SO...Tracy's job depends a LOT on her use of a computer. One that the school does NOT provide. Tracy has had computer issues, and had had a friend who fixed it for her. Well, this friend (male) recently became a source of...(well, let's just say he was acting very maturely), so Tracy no longer felt comfortable bringing her computer to him when it failed.

It failed. Completely froze. Wouldn't boot up. She HAD to have a computer. She e-mailed me and told me she needed a miracle, and fast, or her job could literally be in danger. I do not normally pray like this, (But I sure am going to start!) I'm not normally so bold, but it IS easier to ask for others...(shouldn't be, but it can be!) This is what I wrote to her:

"Lord, you tell us in your Word that we have not because we ask not. And we don't receive because we don't believe You will give us what we need. Well, I'm asking on Tracy's behalf that You will provide her a new computer. One that is reliable and that she can use for her schoolwork and keeping in touch with her friends and family.

She needs this Lord, so we're asking. And we're believing that you will meet her needs. Your word also tells us that You will meet all our needs according to his glorious riches in Christ Jesus. (Phil 4:19). So we are asking you to meet Tracy's need for a computer.

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Eph 3:20-21

I am expecting good things for you, woman! Let me know!Love ya"

Well, THAT VERY NIGHT, this was her reply:

Thank you thank you thank you!!!

It was kind of amazing and no doubt God. After school I came home and had a message to call my dad immediately. I called him. He told me to find the closest Best Buy and see the Geek Squad. He would pay for it and if need be, buy me a new laptop.

Oh my gosh - Kerri, I couldn't stop crying!!! My father NEVER does this sort of thing. All through college I never got one care pkg. He did buy my winter clothing and some things, but not just "I'm thinking about you" sort of stuff. It's still been that way over the years. I mean a couple years back he decided one Christmas that he thought it was better not to exchange gifts. That hurt. and with all this moving, he's been kinda quiet - not real talkative about it. I couldn't tell what he was thinking.

Anyways...so I go to Best Buy and of course (just like a car) the computer boots up perfectly as if nothing was ever wrong. The guy ran a few diagnostics. Bottom line, it could have been a fluke or it could be my hard drive going bad. In the meantime I brought it home and it continued to keep working.

My dad and I talked again and he reaffirmed that he wants me to call him the minute something goes wrong with it. He doesn't want me losing my job because I can't get my work done.

Anyways...it's been a blessing to see God's hand at work tonight in ways that I wouldn't have dreamed of. God figuring things out is always better and I'm learning to let go and believe that He'll care for me. It's not easy!

SO.....Let me encourage you today to do two things: When you pray, be bold! We can go before God with confidence! And remember that you can pray for yourself the same way you pray for others! And secondly, BELIEVE that God hears, AND answers. You may not always get the answer you want immediately, but you might. You never know...until you ask.

Monday, September 28, 2009

The REAL problem with government healthcare....

Okay, so I read this article about Medicare fraud. I mean, you have to be naive to think that no one ever tries to scam anyone else, including the government. But THIS...this is ridiculous. Here are just a few tidbits from the article (Reader's Digest, October 2009):

"One pair of scam artists in Florida used the Medicare identification numbers of DEAD DOCS to bilk $1.3 million from the government--also known as we the taxpayers.....More than 50,000 of the bogus claims involved doctors who had been deceased for at least TEN YEARS."

ARE YOU KIDDING ME??

"Here's another good one: the podiatrist who allegedly billed the government for treating people with no feet. Dr. David Quang Pham was indicted in St. Louis this past June for charging the governemnt for nonexistent procedures that he backed up with phony notes (Pham has pleaded not guilty) {of course}. As an unforgettable press release from the local U.S. Attorney's office put it, 'Dr. Pham submitted reimbursement claims for treating the feet of patients whose feet had been amputated prior to the dates of service.' Once again, it was the taxpayers who had to, er, foot the bill."

I'll just let that one sink in a minute.

"The National Health Care Anti-Fraud Association estimates that more than $60 BILLION a year is lost to fruad." Hmmm...I wonder how many Czar's you can employ for $60 BILLION a year? Maybe some of them should concentrate on plugging these holes instead of creating more programs for people to scam.

* Michael DeJesus Huarte set up 14 health care clinics to treat cancer and AIDS, and billed the government for $70 MILLION in Medicare and Medicaid reimbursements.

* 1,581 "medical equipment companies" billed Medicare for $97 MILLION.

* a "pharmacy" in Florida allegedly selling nebulizers for asthma patients was actually a broom closet, and the pharmacist, an air-conditioning repairman.

* In Michigan, Dr. Robert Stokes removed MINOR skin blemishes telling his patients they had cancer, scaring them half to death, and jacking up his Medicare reimbursement.

* In Pennsylvania, a dentist pleaded guilty to doing root canals on patients who didn't need them

"In January 2007, Medicare shut down 18 medical equipment sellers in Florida after investigators discovered they were phony. But the companies were reinstated on appeal--only to be indicted several months later, after they had been paid another $5 MILLION in taxpayer money. Loopholes that allow quick reinstatements-OFTEN AFTER JUST A SWORN STATEMENT FROM OWNERS-must be closed."

Okay, read that again. They were closed for being phony, appealed, and were reinstated (and PAID) for their word. Only the government.

The article ends: "True change may take some time. But here's one small step Washington could take right away to restore some confidence: Make sure that doctors collecting our dollars STILL HAVE A PULSE."

Thursday, September 24, 2009

A Wonderful Pastor

A dear Pastor came to see me today. His name is Pastor John Hutt.

Last MARCH, I tried a church called The River here in Allegan. And I really liked it. I ran into Pastor Hutt (although I knew him as REVEREND Hutt : ) during the meet-and-greet. He was my "Reverend" when I was 8 years old at the CRC I grew up in. I could NOT believe it. Well. We caught up a little after the service, and I told him about my "challenges", as well as my miracles, including my amazing husband and miracle child.

Since I have been known to say some rather critical (ahem) things about churches and pastors in the past, let me publicly tell you about THIS pastor.

I saw him at this church ONCE. I was able to go one other time since then, but Pastor Hutt wasn't there.

Pastor Hutt has called me every 2-3 weeks since March to let me know he has been praying for me and that he hasn't forgotten me. (I KNOW!) I had to pick my chin up off the floor too! Bummer of it is that he usually calls at nap time, and the ringer is off! I'm not much of a phone talker anyway, what with the trach, and Jacob being such a busy boy.

I e-mailed him and asked if he ever made house calls. I've been longing to talk to a Pastor again, and I just can't get out to see him right now. (He is a counselor at The River, and sometimes preaches there as well). He called me and came out to see me today. It was AWESOME.

SO....thank you thank you thank you to Pastor John Hutt, and to any other pastor or layperson out there who is as vigilant with the chronically ill. GOD BLESS YOU ALL....You may never know the depths to which you reach people.

Wednesday, September 23, 2009

What's in YOUR Thought Closet?

Whoo!

Joanna and I are doing a Bible study called Me, Myself, and Lies, by Jennifer Rothschild. It is awesome. Talk about self-inspection. Yikes. Be prepared to look into YOURSELF with a highly power microscope on this one.

The overall gist of the whole thing is that we have thing running monologue with ourselves...and that much of what we say to ourselves is either damaging, untrue, or both. This Bible study asks you to take a look at what you say to yourself, silently, 24 hours a day, and challenges you to hold it up to the Truth of God's Word. If the two don't gel, I can guarantee you which one is wrong, and it ain't God!

Joanna and I were talking about why so many Bible studies we do seem to be AMAZING when we do them, but then we forget...and Jennifer addresses this in her study in just one brief phrase: DAILY MAINTENANCE. We need to DAILY take our thoughts captive and REPLACE them with God's thoughts (to put in the thought closets of our mind).

As a person with chronic illness, my thoughts have a tendency to get negative when I'm not feeling well. I immediately start telling myself I have no value, that I am useless since I am not a productive member of society, that I'll never amount to anything, etc. All because my illness has changed my way of living.

What I have to remember is that I HAVE NOT CHANGED. I'm still the same person with the same dreams, loves, likes, passions, skills, goals, flaws, and intellect. Underneath the muscle weakness and facial ticks and problems swallowing and the trach...it's just ME. I am NOT my illness. My thinking needs to reflect how God sees me, illness or not.

You probably struggle with negative thoughts about yourself whether you're healthy or not. "I'm not a good enough wife. I'm not a good enough mother. I'm not a good enough friend. I'm not a good enough daughter, sister, Christian...." Whatever, you fill in the blank.

My dear sisters in Christ, we can only be good enough because Christ's blood has MADE us good enough. On our own, no matter how healthy, smart, funny, generous, good, lovely, no matter how badly we want to be enough, we will NEVER be. But with God...He is MORE than enough. And when we allow Him to live in us, when we allow HIS thoughts to permeate our being, then we, too, are more than enough.

Just the way you are.

Get the book. You won't regret it.

Monday, September 21, 2009

My Name Is....

I am shocking.
I can hurt you.
I will devastate your life, and change it in ways you could never imagine.
I can be the worst thing to ever happen to you, OR
I can be the best thing to ever happen to you.
I might take away your ability to work,
or walk
or laugh
or breathe
or see
or think clearly
or even live.

My name is chronic illness.


I will damage the connection between your nerves and muscles.
I will effect your ability to speak,
to swallow
to walk without falling
to hold your own head up
to breathe on your own
to go out alone
to be independent
to live a "normal" life.

My name is myasthenia gravis.


I will save your life.
I will cause you more trouble.
I may make you gain weight.
I may make you grumpy
or tired
or weepy
or hungry
or sad.
I usually help more than I hurt, so you keep me.
I may make you feel trapped.

My name is medication.


I can save your life.
I can give you a reason to go on.
I can bring you back from the edge.
I can make life bearable.
I will never give up.
I will help you fight when you just don't want to.
I will help you go when you just want to stop.

My name is HOPE.



"I am the Way, the Truth and the Life.
I am Freedom.
I am Emmanuel.
I am the Prince of Peace.
I am the Healer.
I am Wonderful.
I am your Counselor.
I am your Savior.

My name is JESUS."

Friday, September 18, 2009

A Few Thoughts for the End of II Week

Well, first, let me just say how timely it was when I went to the grocery store yesterday afternoon. I FINALLY got someone from U of M to call me back and call in some different pain medication. So I go to the store, park in handicapped, start limping in to get my medication and a couple of other things. I'm just thrilled that I can go to the store, alone! Even though I'm in pain, my MG is ALMOST behaving itself (thank the Lord!). The amount of times that I have been able to go anywhere (shopping) alone since Jacob has been born is about....3 or 4, maybe. So I'm thinking this is awesome. I even used the self-check out!

So I'm on my way out, feeling a little tired, but mostly just in pain from my hips. I put my 3 little bags in the car, turn to get in, and notice this bleach-blonde, itty-bitty, overly-spunky soccer mom craning her neck to glare at me as she's pushing her 1525 pound cart to her mini-van. I felt like running her over, to be completely frank. I felt like driving over to her car and giving her the lecture of her life. Just because I'm not in a wheelchair or blind or have a helper-dog or whatever doesn't mean there's nothing wrong with me. I could just SEE what she was thinking. Pain makes me very cranky, and I had just about had it. It took FOUR DAYS to get different pain meds that would hopefully work, and this woman looked at me and judged me in about 5 seconds. So to you, missy: May the fleas of a thousand camels infest your armpits, and may you never experience half of what I've been through. You obviously couldn't handle it.

I want to say a GINORMOUS thank you to Lisa Copen, founder of Rest Ministries and National Invisible Illness Awareness week. Despite living with horribly painful arthritis and not even being able to type with all 10 digits, Lisa has done incredible work to advance awareness, tolerance, and education about invisible and chronic illness. May God continue to bless the work of your hands, Lisa. You are AWESOME.

Thursday, September 17, 2009

Ways to Encourage a Chronically Ill Friend

September 14-20 is National Invisible Illness Awareness Week, and I have been blogging all week to promote education about people with chronic illness. Below are some excerpts (used with the author's permission) from the book "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend" by Lisa Copen, founder of Rest Ministries. Many times people truly want to help, but just don't know what to say, or what to do, so they say, "If you need anything, call me." Well, here are some specific suggestions from a chronically ill person. Anything in {brackets} are my words.

339. Don't pretend the illness doesn't exist, and don't act like that's all she is about now. Tell her if you feel awkward about how to address it.

345. Allow her the occasional pity party on your shoulder without your advice or perky attitude.

356. Give her a jar of encouragment. Fill a jar with slips of paper each bearing encouragement, such as verses from the Bible or positive sayings. Tell her whenever she is feeling down to pull out a word of encouragement.

363. Remember that the weather can dramatically alter how one feels physically. A bit of rain could make him bedbound for a few days. {or extreme cold, or high humidity}.

366. Understand the difference between sympathy and empathy. {In my (Kerri's) own words: try to put yourselves in my shoes, but don't feel sorry for me. We don't want sympathy, we want understanding.}

372. When you pray for him, remember to pray for his family (children and spouse as well as parents and siblings). It will bring him comfort because he's worried about how his illness is impacting their lives.

380. Suffering is humbling. Recognize he may be embarrassed to accept your help. Don't make a big deal out of it.

396. Validate her feelings by saying, "That would scare me too," not "You shouldn't be afraid."

405. Remember, you may be the only "Jesus" she sees visibly acting in her life right now.

412. You don't have to have money to encourage someone. It's about your presence not your presents.

417. When he cries, just sit with him. You don't need to do anything. Don't tell him, "Don't cry" or "This isn't worth crying about." {Or, try to "top" his misery with your own.}

422. Offer to change her sheets. This is an impossible task for many people with chronic illness but an awkward task to ask for help with.

433. {If you don't know what to say} Say, "I wish I knew what to say, but I don't. I'm here for you though." {In other words, don't just avoid a person because you don't know what to say!}

446. When you visit, leave behind a little gift or a note for her to find later.

453. Try to see the world through her eyes. How would you feel if tomorrow you suddenly couldn't stand, if you forgot your children's names, or had to quit your job?

472. Stand up for her when others make ignorant remarks about her illness in your presence.

482. Ask, "How far can you walk comfortably?" Don't take any amount for granted.

485. Understand that being chronically ill and sick are two different things. When your friend is both sick AND chronically ill, she desperately needs you.

486. Leave an encouraging message on her answering machine {or voicemail} when you know she will be gone so that she comes home to a message of warmth.

I think for me, the biggest thing is that I don't want to feel forgotten. I used to be a thriving, contributing member of society, and now I am basically home-bound. In my head, I'm still the same person, but my body has betrayed me. I am still the same person you have known, I just have different limitations now. Don't forget that's it's still just me.

Wednesday, September 16, 2009

Waiting and waiting; Tips to stay healthy

Have you ever noticed that when you're waiting for something important time seems to just stand still? Ask any woman who has ever gone over her due date!

But seriously....It feels like I've been waiting to hear from the neurologist for a month now. It's been almost 48 hours. Doug was like, Honey, do you know what it's going to take to organize an MRI under sedated with a trach? I was like, oh, yah, I get your point. They have to get the machine, the radiologist, an ENT, the anesthesiologist, and my neuro will probably want to be there too. I'll probably have to stay overnight, so they'll need a room for me...

Then my darling husband gives me no less than FIVE Days in the next 4 weeks that he can't go. I was like, um, you said it yourself....do you know what it takes to put this together??? So I e-mailed the neuro (AGAIN) and gave him the dates, but I was like, if it's one of those or like DECEMBER, book it and I'll figure something out. I'll see if my parents or one of my sisters can bring me and then Doug can come the next day. For those of you who have known me for a while, this is a HUGE deal...that I could seriously go with anyone but Doug, and not need anyone there overnight. I used to be so anxious that I couldn't even function without Doug. I'm much better now...but I still need my hubby!

I'm not going back to Ann Arbor this Friday. I am feeling okay MG-wise, and don't feel like dealing with the possibility of more stress. One thing about autoimmune diseases, and especially MG is that stress makes the sypmtoms 100 times worse. This will give you a laugh: when I was doing pretty badly the last couple of months, Dr. Teener's nurse said, "You just have to identify the stressors in your life and do whatever you can to avoid them."

Yah, I'll let that sink in a minute.

I have an unpredictable chronic illness that requires a 280 mile round trip every 3 weeks for needles to get stuck in me, a workaholic husband, a 3 year old whom I am homeschooling, 2 dogs, a huge farmhouse, chickens, ducks, 2 turkeys (which will be dinner shortly).....but I have to remove all stress from my life. I'm like, well, unless I move to a convent on the top of a mountain....

And then, add to all this (which I have to say I just knew was going to happen) Jacob got a cold. Some hideous germ from the disgusting rides at the freak show, I mean, County Fair. Exactly 2 days later...the snot starts running. Just like when we went to Binder Park Zoo. Exactly 2 days later and he had a high fever and spots....roseola. Okay, for those of you going, what's the big deal, kids get sick...well, it's not a big deal for HIM. It can be a big deal for ME. Besides dealing with a cranky little one who doesn't feel good, and doesn't sleep well, I have to NOT get his germs when we're in each other's faces all the time.

But, I told Doug I am NOT getting sick. I will just keep saying that over and over. I will NOT get this. I think sometimes it's a kiddie virus anyway, maybe one that I've had already in my life. I used to get colds all the time, but since I've had to be the germ police, it's been a lot better. It is amazing what you can avoid getting if you're just super careful. People may stare and think I'm an idiot, but whatever....I'll live! Here are some of my tricks:

1. Always, always, ALWAYS wipe off the shopping cart you use. You can actually get hepatitis from a shopping cart. I know...how gross is that?

2. Wipe down your remote, phone, etc., if you have lots of people in your house, and do it FREQUENTLY when someone in your house is sick. Do the same for doorknobs and light switches. These are things people don't usually think of.

3. Skip this one if you have a weak stomach or like buffet's: Avoid them! Or at LEAST use your OWN utensils when you get food out. I swear this is true: At an Old Country Buffet one time with Doug's grandma, I saw someone drop a spoon out of salad dressing onto the floor. Another person comes by and puts the spoon on the metal shelf in front of the food. A little girl comes by and sticks the spoon in her mouth. Her mother takes the spoon out of her mouth and puts it back in the dressing.

4. Don't sip out of anyone else's glass or bottle...ever.

5. Wash your hands a LOT. You could probably avoid 75% of illnesses if you'd just wash your hands more often!

6. Don't touch your face: don't rub your nose, or eyes, or anything with your hands. Use a tissue or napkin.

7. Carry antibacterial wipes whereever you go. For example, when Joanna and I go McTalking for Bible study (and our sanity) either she or I wipe down the table before we sit down. Even if they've just "cleaned" it...it's still germy and filthy.

8. Wash your hands or use antibacterial hand stuff after you touch money. Money is one of THE dirtiest things on the planet.

9. NEVER lick your fingers unless they are just cleaned. Never lick your fingers when counting paper or money. YUCK.

10. Ask your friends and family to let you know if they are not feeling well before you get together. Remind people that it's very important that you don't get sick.

Anyone else have other tips for avoiding germs?

Tuesday, September 15, 2009

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!"

Monday, September 14, 2009

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.

Sunday, September 13, 2009

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

Friday, September 11, 2009

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!

Thursday, September 10, 2009

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.

Wednesday, September 9, 2009

Testing

Okay, Joanna told me how to do a link, so we'll have to see if it works. I'm pretty basic when it comes to mah skillz on the computer, so we'll see.

We had such a blast last night. McTalking time, we call it. Bible study and supper without the kids...as Joanna said on her blog, I CANNOT encourage you enough, especially if for some reason you can't make it to a group, grab a friend and do a one-on-one Bible study. Get books from Amazon.com or something. Go online and print a free study...anything. Having the one-on-one accountability is awesome.

We just finished NO OTHER GODS by Kelly Minter. WHOA. If you're honest with yourself, you will get SO much out of it. I would recommend this to anyone! The one we will be starting now is Me, Myself and Lies by Jennifer Rothschild. She is amazing. Blinded at 15, nothing has slowed her down. AMAZING. Joanna and I were talking about how excited we are to get our butts whooped by this study...all about our thought closet, and the things we say to ourselves, silently or aloud, that have a huge impact on our lives. We will keep you posted!

Gotta run, busy day today...
Oh, quick note....please shoot a prayer up for me..my dang hips are still bugging me, can't get a hold of my neuro...just pray it goes away. The next step in an MRI...don't want one!
Thanks!!

Tuesday, September 8, 2009

Invisible Illness...Some of the Things You Don't See

Invisible Illness Awareness Week in next week....September 14-20. I am so thrilled to see exposure to this topic, because so many people are covering it on their websites, blogs, facebook, what have you...There is such a stigma with invisible illness. When you don't wear it on your sleeve, or if you're not in a wheelchair or on crutches or limping or drooling...then you must be fine, right? Especially if you have an invisible illness and are overweight. That's pretty simple, right? You're just fat and lazy, and if you lost weight, you'd feel so much better. Probably even be able to get off that medication! People don't see under the skin. They don't see the chronic pain, physical AND emotional, that comes with many invisible illnesses.

They don't see the bills. They don't see the medication, they just see the side effects (and wonder why we are so grumpy, tired, angry, hot, cold, bloated, weepy, hungry, etc.) They may not understand that just being there for someone and trying to keep them lifted up can literally save their lives. Many people with chronic illness, whether invisible or not, struggle with depression. Some get suicidal. Knowing this, knowing that YOU can make a difference...

People may not understand how helpless we feel. We want to help YOU, and others too, but our bodies just won't cooperate. Many times our minds are still 100%, but our bodies have betrayed us.

I wish that I could wear my disease sometimes. I wish that the world could see when I'm really struggling so they wouldn't judge me. Other times I want to hide it. I want to rip my trach out and just be normal and pretend and try as hard as I can to just fit in. I pretend a lot. I'm sure others with invisible illnesses do as well. We get tired of hearing platitudes and "Just have faith," and "Just believe more" and "God is faithful..." so we just smile and say we're doing well when we're really just broken inside. There are moments when we push ourselves to the brink of collapse to just live life. Because we are so sick of sitting on the sidelines.

If there is only one thing you remember from anything I ever say, I would want it to be this: Remember those of us with chronic illness, invisible or not. Remember how isolated we feel sometimes. Remember that my mind is still normal, and I'm still me, whether my body is cooperating or not. Remember that I still like to have friends, I still like to go out, I still like to laugh and have fun, even though I may not be able to. Just remember me. That's all.

Just remember.

Monday, September 7, 2009

Ode To Prednisone

Oh Prednisone, my Prednisone,
I hate you with a passion.
You make me scream and cry and yell,
And you do NOTHING for my fashion.

Oh Prenisone, my Prednisone,
For those who do not understand,
Imagine seeing red one minute
Then bawling to beat the band.

Oh Prednisone, my Prednisone
Whose effects turn faces to moons,
And makes you feel so hungry
You could eat a raw racoon.

Oh Prednisone, my Prednisone
I can't wait til you are gone
Then I will have nothing else
To blame my bad moods on!

Oh Prednisone, my Prednisone
The emotion you evoke.
Sometimes I get so worked up
I think I'll have a stroke!

Oh Prednisone, my prednisone
The mood swings you impart.
Laughing, crying, maddening!
Hot flashes even start.

Oh Prednisone, my prednisone
I cannot live without you...
At least right now, but VERY SOON
With you I will be through.

Oh Prednisone, my prednisone,
It's such a love/hate thing.
Love because you saved my life,
Hate for ruining everything.

Oh Prednisone, my prednisone,
With weight gain and double chin,
I proudly say to you, you beast,
That eventually I WILL WIN!!!!

I have been in a funk. Yesterday I was SO exhausted....probably from the garage sale. Then we went to Doug's mom and dad's because we had to get chicken food. Plus, Doug's mom fell the other day, and has a huge ol black eye. I've been just emotional and mood swingy. Combine the prednisone with hormones, and OH MY WORD look out. I just hate it. It's so stinky to keep swinging back and forth like this. Yesterday's post was just plain silly. I was in a tizzy. Tired. Kind of like I am now! Went fishing all day with my mom and dad and Doug and Jacob. Once again, my 3 year old kicked my butt, as did my legally blind 70 year old father. YAY for me!

I DID however, catch 2 fish, the BIGGEST bluegill of the day and the BIGGEST perch of the day. So....not so much quantity as quality, but it was a good thing that everyone else got the quantity, or we'd be hungry tonight!

More tomorrow on Invisible Illness...stay tuned....

Sunday, September 6, 2009

Survery Says.....

K. I'm just wondering if anyone besides Joanna and Ashley read my blog anymore. If you do, can you PLEASE comment, so I know I'm not rambling for nothing?

Thanks.

Saturday, September 5, 2009

Garage Sales Are DONE For The Year!!!

Halle-honkin-lujah is all I'm sayin'! I am exhausted! But it was worth it. Three garage sales this summer and we made enough money for gas TO Florida AND home this winter. With the truck. Pulling the boat! Whoo-hoo!!!! Now we are so happy we do the dance of joy! Dy-dy-dy-dy-da-da-dy-dy-dy-dy HEY! HEY! HEY! HEY! {1000 points if you know what I'm talking about..}

SO....we had gorgeous weather...it was a bit warm for me, but who can complain when you're having a garage sale? Mucha thanks to my sister Lori, nephew Will and mom and dad for helping out with the sale and Jacob! THANK YOU !!!! We really didn't have that many people stopping either. I was selling all my Stampin' Up! stuff though, and that helped a lot. Too expensive of a habit to keep up. (Seeing as how I do Creative Memories as well and will NEVER give that up!!) We still have TONS of stuff left. I think we're going to consign my stamps to try to get a little money moooo-lah for Florida, and donate the rest. Lakeshore Pregnancy Center is going to be veeeery happy!

We were practically giving stuff away towards the end...this TOTALLY Dutch guy with a super heavy accept was here yesterday. (I'm 100% Dutch, so I'm making fun of my own nationality here...) Dutch folks, for those of you who may not have heard, are NOTORIOUS for being cheap. Just ask my husband. (hehehhehehe) But seriously.... This guy was muttering under his breath the whole time. He picked up a surge protector: "Does dis verk? Do you have electric somevare around here?" (you've got to kind of hack when you say the "h" in here). So he grabs a curling iron by the barrel to plug into the surge protector to see if it works. Doug was like, um, you might not want to do that...

We had $2.00 on it. Dutchie says, "Vill you take a dollah for it?" I was like, sure. Then he moves on to the VHS tapes. Had a buck a piece on them, or 6/$5.00. Cheap! He's like, "Oh, too expensive, too expensive! I get zem for a quartah!" I was like, dude, take as many as you want for a quarter a piece...I just want this stuff gone! Something else was like $4.00, BRAND NEW, a lighthouse thing with 3 decorative plates...he was like, "You take two dollahs for dis?" I was like, whatever, just load your car and GO! Hilarious.

Even sold my haywagon that I didn't know was for sale!

Quick note: National Invisible Illness Awareness Week is Sept. 14-20. Stay tuned for more posts on Invisible and Chronic Illness!

Wednesday, September 2, 2009

Blatherings

Well, we had our first official night of bad dreams last night. Jacob had a "dish" in his bed. That would be fish for you who don't speak 3-year old. I was actually downstairs at oh, 2:30 because my sugar was a little low, so I had a bowl of cereal. Jacob was screaming at the top of the stairs. This would be the third time. First time I got up, tucked him in, he didn't say much. Second time, Daddy got up, and Jacob told him the problem. Daddy tucked him in, and scooped the fish out of his bed.

So here he is screaming at the top of his lungs from the top of the steps. I told him to come down for a minute, so he did.

Me: What's the matter, baby?

Jacob: There's a dish in my bed.

Me: What kind of fish?

Jacob: I don't know, but it's not a good one!

Me: What do you mean it's not a good one?

Jacob: It's a shark I think! {continued wailing}

Me: I think you're just having a bad dream, sweetie. There's not really a shark in your bed.

Jacob: Yes, there is Mommy!!

Me: Okay, let's go back to bed.

We go back upstairs, and Jacob looks at me with those HUGE blue eyes, still all big and scared and glistening with freshly shed tears, and says, {sniff} "By Daddy?" I was like, done. So he climbed in bed between me and Daddy, and snuggled close and went to sleep. Doug didn't get a lot of sleep because Jacob tends to sleep sideways, and Doug always gets the feet end!

Even this morning, when we woke up, and when I told Jacob he would sleep in his bed tonight, he said, "But there's a shark in there!" So we went over to his bed with a flashlight, checked every nook and cranny, and found no shark. Hopefully that will work....Must. Have. Sleep.

And, as some of you have read on facebook, we've been losing chickens! I think 3 or 4 have died now. They've all been during the day. The first one we came home and it was over by the bunny cage missing a head. Nice. Then we found a chicken pecking at a dead one the next day. Doug shot 3 chickens that he thought were doing it. The next day, IN the pen, there was another dead one, and the next day one outside on the concrete. The chickens are all skittish now (Gee, ya think? They're either being shot at or dropping like flies!)

I don't think it's like possums or racoons or coyotes, because I would think they would eat the whole thing. Maybe weasels? I don't know. They don't come out of their pen much now...they kind of all huddle together. I don't think we have a cannabilistic chicken either, because they don't ostracize anyone, or run from certain chickens. Ug. The joy of livestock.

Tuesday, September 1, 2009

30 Things About My Invisible Illness

30 Things About My Invisible Illness

1. The illnesses I live with are: myasthenia gravis, fibrolmyalgia, diabetes and osteoporosis. For this I will concentrate on the myasthenia (MG).

2. I was diagnosed with it in the year: unofficially in 2000, officially in 2003.

3. I did not have a positive MG test until July of 2003 (almost exactly 8 years after my first symptoms!) when they came out with a new antibody test called MuSK+.

4. But I had symptoms since: July of 1995

5. MuSK+ MG is more difficult to treat, and can be more life threatening since it always involves the muscles of speaking, swallowing and breathing.

6. There is no cure for MG.

7. The biggest adjustment I’ve had to make is: EVERYTHING is different. But the worst, or hardest thing, was losing my independence.

8. Most people assume: that because I look okay, pretty normal, except for the trach, that I must feel fine, and that if I wasn't overweight I'd be fine.

9. The hardest part about nights are: actually sleeping. I have to sleep on a wedge, I cannot lie flat or I cannot breathe. I have to sleep on one side or the other.

10. Each day I take over 20 pills (including vitamins).

11. I make a 280 mile round trip to get a treatment called plasmaphersis every 3 weeks, or more frequently depending on my symptoms.

12. I have a fantastic neurologist! Shout out to Dr. Teener, U of M.

13. If I had to choose between an invisible illness or visible I would choose: invisible, even though with a visible one people wouldn't be as judgemental.

14. I had to quit working in August of 2000 because of my disease. I tried going back 12 hours a week to an office job, but it was too much, so I tried 8 hours a week, then 4....just couldn't do it. And it broke my heart.

15. People would be surprised to know that if I could change the fact that I have MG and everything that I have gone through, I would NOT do it. I am a different person because of everthing I have been through, and I like me better now.

16. This illness has challenged many relationships, and made the best ones stronger, including my relationship with God.

17. One of the most frustrating things about this disease is that it's very difficult to plan anything. I've always been a planner!!

18. It's also very difficult to be spontaneous, since traveling anywhere requires an entourage of bags, medical equipment, medication, etc.

19. Vacations are challenging! Remembering to pack everything I need, praying none of my equipment breaks! (Although being married to McGuyver helps!) Home is also my "safe" zone. Being away is fun, but always a little scary. Doug is my rock.

20. My husband once fixed my suction machine at 2 in the morning using a wire from one of my earrings. He is amazing.

21. If I didn't have the Lord, I would be dead.

22. I should not be medically be alive. The CO2 in my blood was, at one time, 70% (while I was still working!) At the very least I should have major brain damage. (No comments from the peanut gallery, thank you very much!) ; )

23. My family is amazing and supportive and I would be lost without them.

24. If I could have one day of being "normal" again, I would: get on the floor and play with Jacob all day, then take a long hot bath. (Can't take baths because my muscles relax too much and I can't get out!) One time I fell off the toilet because my muscles just gave out. I never realized how much muscle strength it actually takes to just sit!

25. What amazes me is how God provides enough for every single day. Enough strength. Enough energy. Enough help. Whatever it may be. ALWAYS enough.

26. One thing I've learned is that when the chips are down, you learn who your real friends are. You see character come out. I have been both bitterly disappointed and pleasantly surprised by people. The bitter diappointment is a hard pill to swallow, and it came totally by surprise. The good stuff is great though!

27. The best things you can do for someone with chronic illness is: keep in touch. Let them know you care, and ask for specific ways you can help them. I may feel great today, and barely be able to lift my arms tomorrow. Chronic illness can be very isolating and lonely, and therefore, discouraging.

28. Another thing I've learned is that there are some amazing, courageous, kind, caring, loving, wonderful people out there, some suffering with chronic illness, some not, many of whom I call my friends. I love you.

29. I've chosen to participate in Invisible Illness Week because it is so important for me to educate people about chronic illness. We are NOT lazy people. We don't WANT to ask for help. We don't LIKE being dependent on others. We HATE not having our freedom, not being able to work, or clean our own house or help others with theirs.

30. My illness has taught me to value each and every moment in life. We cannot take any moment for granted, because we will never get it back, and we may never have that opportunity again. We just don't know how much time we have with those we love, so LIVE every moment of your life. Don't waste energy on anger or bitterness or holding a grudge. Life is TOO short!


Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com