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!!

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.

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....

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.

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!

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.

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