Wednesday, September 17, 2008

A new place for unit study and lapbook fans!


Have you heard?

Homeschool Share has launched

message boards!!! 

Now all you unit study fans can talk
Does matter which unit study you use,
come talk about it!

There's even a special forum
for LAPBOOK fans as well!
('Cause if you're like many
of us unit study fans,
ya also like lapbooking!)

And if you've never visited Homeschool Share,
you don't know what you're missing!

HSS logo
Hundreds of free
literature-based unit studies
and lapooks!


Hurricane Ike comes to Ohio!


9/19 ETA: 
We've since learned that Hurricane Ike hit Ohio as a Level 1 hurricane.     There are still some without power.

Wow!  Sunday afternoon, evening, and night were unreal!  Ohio got a small taste of Hurricane Ike, and I simply cannot imagine the power that must have been behind the real thing!  I have never seen sustained winds like that that lasted for hours.  Small branches and leaves were flying everywhere...or rolling like tumbleweeds.  I saw one bird trying to fly.....he was losing the battle. 

I went back home to get our dog, as I knew her box was right under a willow that we've been waiting to fall....most of the limbs had already come down in other storms.  I felt sure it would come down in this one!  Driving home to get her was like driving on an obstacle course...limbs down everywhere on the roads.  I've never seen her so happy to see us....even when we have returned from being been gone several days.

When it was all over, we had no trees come down.  \o/   My in-laws lost three, but did not fall on anything that could not be replaced.   Half of one tree fell while we were there.  We were out on the patio and it fell toward us onto the upper patio.  It took out an old grill, but the smoker and the picnic table survived it.  The other half came down after we left, but fell into the field.    Another tree fell into the same field, but much further from the house.   The third tree that fell was in the horses' area.  It landed on the brand new round bale hay feeder, but we are thankful none of the horses were hurt.

We were without power for more than 50 hours.....which is awesome, as we were told it would 4 to 10 days before we had electric.   We were one of the lucky ones.....we dusted off the generator and hooked up the freezer and fridge and two lamps.   We had borrowed the generator from my in-laws for the summer, to ensure dh's doctorate project was never without power for any great length of time. 

My in-laws were worried about their basement flooding (but the rains never came!), so they told us to keep the generator since we had recently purchased 325 lbs. of beef!!!    They were able to locate and purchase a generator for themselves Monday afternoon......only after calling all around trying to find one.  They were required to secure the purchase with their credit card.  Then they had to drive about an hour and half to get it. 

Lines at the gas stations were unbelievable...everyone filling up their containers so they could run generators.   Fire stations were giving away water.  Local stores had Red Cross and fire stations come in and take the foods from the coolers and freezers and give it away to those in need......I cannot imagine the amount of money they lost.  Everywhere you looked Monday and yesterday, folks were cleaning up trees and debris; pick-up trucks were filled with branches.    Restaurants that had electric had lines and waiting lists.  Restaurants that were normally closed during breakfast hours, opened to serve.   Ice and water at the stores went fast.

Many are still without power....please keep them in  your prayers.  We are so thankful that this took place in September and not January!


Sunday, September 14, 2008

Invisible Illness Week, September 8-14, 2008

This will stay at the top until  Invisible Illness Week is over on September 14.
Scroll down to view other posts,
including my post on my Invisible Illness.

Statistics show that nearly 1 in 2 people in the USA have a chronic condition and that 96% of it is invisible.

So what is an invisible illness?  All kinds of conditions! Multiple sclerosis, fibromyalgia, chronic fatigue syndrome, diabetes, arthritis, heart disease, autism, migraines, chronic back pain, cancer, endometriosis, eating disorders, and yes... mental illness and depression.  There is no sign of the illness existing, nor  (at least not until the debilitating stages) the use of an assistive device like a cane or a wheelchair.

National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is an outreach to increase awareness that living with an invisible illness can be emotional challenge—as well as physical—and that more people than we would imagine are suffering silently.

Respondents answered the survey at and reported the following other annoying comments people tend to make:

  • “Your illness is caused by stress.” (14.22%)

  • “If you stopped thinking about it and went back to work…” (12.42%)

  • “You can’t be in that much pain. Maybe you just want attention.” (10.95%)

  • “Just pray harder.” (9.15%)

Believe me, we wish it were that easy.

Join me in prayer for the 133 million sufferers of invisible illness in America and the countless others worldwide.  Our strength, our hope is Jesus Christ the son of the living One True God.

Are you a sufferer of an invisible illness?  So am I.  I have dermatomyositis, interstitial lung disease, and Raynaud's Phenomenon.   Leave me a comment and let me know how I can pray for you!

If you homeschool with an invisible illness and are looking for others who truly "get it" try the "Doing it Anyway" forum at the Homeschool Lounge  or the Beyond Surviving Homeschooling forum at Rest Ministries' Sun Room.

Friday, September 12, 2008

I have an Invisible Illness: Dermatomyositis

I'm Blogging for Invisible Awareness Week

You may not want to read such a long and personal post, so you have my permission to skip this one.

But it's Invisible Illness week and I am posting this more for me (to remember just what it was like in those early days) and for anyone who stumbles across this post who also lives with an invisible illness....may it encourage to you to know there are others like you "out there" and who truly understand your walk.

This has been my fourth year of living with the diagnosis of two autoimmune diseases.  One is called dermatomyositis.  Derm relates to the skin, myo relates to the muscles, and the itis means inflammation.   The other disease is interstitial lung disease.  In both cases, my body's immune system has gone haywire in the sense that it won't shut off when it's supposed to and so it starts attacking various parts of the body that it shouldn't.  Prior to being diagnosed I thought an autoimmune disease was one where the immune system wasn't working when it should.

Anyway, I'm creating this entry as a reminder...for myself.  You see, God has brought me so far along the journey that I quite often forget just what it was like those first several months.  And it's also written to be an encouragement to anyone who stumbles up on it and is also living with an Invisible Illness of their own.   So if you'd rather just skip reading this entry, that's fine.  It's probably going to be a long one anyway!  LOL.

So where was the beginning?  I'm not really sure.  I remember in January or February of 2004, I would wake up so stiff.  Hobbling around a bit and opening and closing my hands would work the stiffness out of my hands, legs, and feet after a bit.  I started taking MSM with chondroitin.  It worked very well for a month or so, then the stiffness seemed much worse.  I noticed too that when I sat for any real length of time that I stiffened up then too.  I also noticed that the knuckles on my hands seemed red and I had faint red streaks from the bottom knuckles up to the middle knuckles on almost every finger.  I just lived with it at the point, not making any appointments to see the doctor, trying to hide it from the family.

That July, I scheduled to have my wisdom teeth removed.  My dentist and been telling me for years to have it done, that I didn't have room for them.  But I'd never had a problem with them, so why bother.  Then I got to thinking about the fact that I used to have a gap between my two front teeth and that gap was now gone.  Yea! It looked much nicer now!  But I wondered if the wisdom teeth made my teeth closer together and would they continue to do so, eventually making my teeth crooked?  I had the wisdom teeth removed.  I had an awful time with the nerve pain for a couple weeks! It hurt so bad.  My nerves were still sending signals to the missing teeth and nothing really helped except the numbing gel the doctor gave me. 

Prior to the wisdom teeth removal, my muscles were starting to become sore and by late summer they were extremely painful each morning.  I felt as if my leg muscles weren't quite long enough anymore and I needed to stretch them out before walking. Each morning, I would hobble out of bed and down the steps and into the bathroom.  It hurt so bad to walk.  Within a half hour or so, I'd be OK except the muscles were still sore.

On top of this, a week after the wisdom teeth removal, I started having eye problems.  My eyes began pulling outward!  I thought the problem was connected to the teeth removal and I went back to the eye doctor, thinking it must be the pain medicine and/or the nerve gel he gave me, but he had no clue.  I went to my optometrist and he referred me to a specialist.

At this point, I began wondering if the extremely painful muscles and the eye problems were related....after all, eyes have muscles.  I thought surely I must have some kind of autoimmune disease (AI).  My mom has two (Sjogren's and interstitial lung disease) and I knew there was a higher occurance in families with at least one person having an AI disease.  Researching the Internet did not help--first off, many of the AIs have very similar symptoms, and second, the Internet net is quite a scary place when researching anything medical.  Seems like you find mostly info on the horror stories of medical problems!

I finally made an appointment with my family doctor.  He agreed--it was very likely an autoimmune problem.  Bloodwork confirmed something was going on.  He referred me to Mom's rheumatologist, where I got more blood work done. 

I also went to the eye specialist.  After determining that I did NOT have a particular autoimmune disorder that involves the eyes, he said that this was a latent problem that affects many children....lazy eye.  That if anyone in my family had a lazy eye, then that was definitely the problem.   And when I asked if it could be connected to all the other muscle problems I was having, he gave an adamant "No."  He completely dismissed that there could be *any* connection!   He wanted to do eye surgery--to cut the stronger muscles of the eye thereby eliminating its pulling the eye outward.  I said I'd get back to him.  I left thinking....Yeah, right, you can't tell me that I suddenly develop an eye muscle problem and it's not related to all the other muscle problems I was having!  There was no way he was going to cut perfectly good muscles!  (I am especially happy that I did not have the surgery, because about a year after that, I was only still having problems with one eye and was now turning INward!!!)

By this time, every muscle in my body hurt pretty much constantly.  Other muscles became affected, including the esophagus, the intestines.  I tired very easily.  My energy was zapped quickly.

One day, Columbus Day, we went out to supper at Ponderosa.  When we left, I felt like I ate way too much.  I felt so full I couldn't catch my breath.  After that I often felt like I just wasn't getting enough air.   I mentioned it to the rheumy.  

Then one day, as I sat in a cold room waiting for the doctor to come in, I noticed my hands were a sort of purplish-blue and legs too!  I remembered reading about Raynaud's Phenomenon and asked the doctor to confirm it when he came in.  It's sometimes  called the "All American" disease because the hands are blue and white from poor circulation and then when the blood rushes back into the veins the hands turn red.  Red, white, and blue....hey, I'm patriotic.

Anyway, more tests and more blood work was done and it was narrowed down to one of two autoimmune diseases that affect muscles.  One more blood test to determine which.

At last I had an official diagnosis.......dermatomyositis.  Then came the kicker, the one I wasn't expecting....I also had interstitial lung disease.  The same lung disease that my Mom has.  I'd had no symptoms of it until the day I went out to supper that one day.

When Ritch and I went in to receive my diagnosis, I was determined I wasn't going to take medication for it.  I'd researched enough to know that most AIs are treated similarly and that I'd very likely be on the same drugs Mom was.  I knew how it affected her body, her eyes, her liver, etc.  I felt surely I could some more natural, herbal route.   That changed with one sentence from the doctor......."If you don't, you'll be dead in two years."  The lung disease was the culprit.

I had a 4 year old and a newly turned 7 year could I not take the prescriptions?   And so I started the traditional treatment of steroids and cancer medications.

As the saying goes, things get worse before they get better.  That certainly held true in this case.  Before things started to get better some 4 months later, things got a whole lot worse. 

I lost 40 lbs.   This was a good thing, since I was 40 lbs. overweight, but I wasn't even trying to lose, so it was quite scary.    The doctor suspected cancer, since with DM there is higher chance of developing some kind of cancer.   He'd never heard of anyone on high doses of prednisone not eating themselves out of house and home and gaining oodles of weight.  He never found cancer.  \o/ God!    Must have just been the stress and just my body's reaction to the meds.

I also lost a ton of hair.  Never to the point of needing a wig, but boy, I wondered.  I probably lost at least half.  I never understood when my hairdresser said I had a lot of hair!  To me it was thin.  Yes, I had fine hair, but there was a lot of it....most people really didn't notice that I'd lost so much hair, but I did.  It came out by the handfulls, daily.  I've since, with the help of Nioxin shampoo, regrown much of it. 

Also during that time, I often choked on foods or drinks due to the DM affecting the epiglottis and esophagus muscles.   I hated drinking anything at that time--I became anxious prior to taking a drink, which usually made it worse.

All my muscles continued to grow weaker.  I could barely lift my head of wet hair up out of the bathtub and I eventually had to give up baths altogether as I didn't have the strength to get out of it once I just kinda fell in.  I was exhausted by the time I got out of the shower.  Lifting my arms up to wash my hair and then to dry and comb it out was soooo tiring!  I had to rest in between.  Walking across the house wore me out.  Taking a gallon jug of milk out of the fridge, it took all I had to get it to the counter that was only about 3 feet away.  At bedtime, I would stand at the bottom of the steps and say "OK, Lord, you're going to have to get me up these things!"  I never knew 13 steps could be so much!  If I got up in the night to get to the restroom, I didn't have the strength to do the steps again and I'd spend the rest of the night in the chair or on the couch.  I got to the point where I didn't even turn over it bed unless I absolutely couldn't stand that position any took too much effort to turn over.  Anytime I'd worked my leg or arm muscles to the point of exhaustion, which happened quickly, they would tremor.

Schooling slowed to a crawl.  Most of my days were spent on the couch.  But I thanked God that I had found, long before this, a curriculum that could be done from a couch!  From almost the beginning of our homeschooling journey, I used an awesome literature-based curriculum called Five in a Row.  When I first read about it, I think I fell in love!  I knew--without even yet seeing it--that it was a perfect match.  It did what we had been doing all along--reading to our children and then discussing the story.  I went full tilt, hook, line, and sinker into it.......I used a Buy-it-now option on E-bay and purchased a package deal that included the first three manuals and many of the books used in the program.   Yes, FIAR can be done from the couch by a mom could barely do anything!  I had to struggle to get through the reading of the book (I'd become winded from reading) but it can be done!

Well, I think that's about it....what I remember from that first six months or so.   Now, I wear sunscreen a lot and, in the summer, a dreaded hat (I hate hats!) and try to listen to my body when it's tired.  I've been off the prednisone several months now and hope to be off the last nasty medicine within the coming year.  

I thank God \o/ that He was my strength during this time.  I am thankful too for the support of my entire family.  And my dear friends from my homeschool co-op were such a blessing, not only for their prayers but also for bringing us meals three times a week during the worst three months.  And I'd be remiss if I didn't thank my church for their prayers and encouraging cards.  (((hugs))) to each of you.... I thank my God every time I remember you. (Phil 1:3).  

"Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong." (2 Corinthians 12:10)

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ." (2 Corinthians 1:3-5)


Monday, September 8, 2008

Invisible Illness: educating yourself (and the doctor!)

One thing I've learned since living with a chronic illness is the need to educate first yourself and second your doctor.  Many of these diseases are rare and doctors are inexperienced with them.  I think most of us would say that we read all we can about our illnesses.  Here are some auto-immune related items that I've found helpful or interesting.

The Autoimmune Epidemic:  Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope by Donna Jackson Nakazawa.

What Your Doctor May Not Tell You About Autoimmune Disorders:  The Revolutionary, Drug-Free Treatments for Thyroid Disease, Lupus, MS, IBD, Chronic Fatigue, Rheumatoid Arthritis, and other Diseases by Stephen B. Edelson and Deborah Mitchell.

Here is an interesting video, mostly concerning MS and childhood diabetes, that does a great job of explaining how autoimmune diseases (in general) work.  It is 45 minutes in length, but very informative.  He discusses some experimental treatments that really offer some very promising hope.  I recommend those who do not have MS or childhood diabetes to also watch this, as he mentions many other T-cell autoimmune diseases, such as Rheumatoid Arthritis, Crohn's, Ulcerative Colitis, etc.

Have you read an interesting book or found something on the Internet?  Leave a comment.


Looking for support for your struggle with an Invisible Illness?

Nearly 1 out of 2 people suffer an "invisible" illness, an illness that you may not be able to see  just by looking at the person.  On the outside, we may not look ill, but we may struggle each day just to get out of bed and live a somewhat normal life.

Today begins National Invisible Chronic Illness Awareness Week.

I, along with several other homeschooling moms, are blogging about our invisible illnesses this week.  If you are, leave a comment below with a link to your blog, so that others might visit your page.

Other places........

I started a message board called Doing it Anyway, which is for moms who have
(or whose spouse has) a chronic illness but who still choose to homeschool.

Another great place is Rest Ministries, which sponsors this weeks' Invisible Illness  Week.  Their Sunroom provides Christian support for living with a chronic illness. 

The store at Rest Ministries has many resources for your chronic illness support group or to help start one.  They also have devotionals written by folks who have truly been there!  The founder of Rest Ministries, who is an author of some of the books on the site, suffers from chronic illnesses.  They also have books for those who are caregivers for or who have a loved one with a chronic illness.

Jen has a listing of other homeschooling moms who continue to homeschool, despite their invisible illness.  You can see their faces, read their names, learn what illness they have, as well as pray for them on Jen's Prayer page.    She'll add you if you let her know.

Hope this helps bring awareness to the many invisible illnesses, as well as provide some places  to visit for those who want to learn more or who may be looking for support of their own invisible illness.   --Celia :o)