Holy Savings Batman!

WOW. I've heard of people going to the store and paying almost nothing for their things, but it sure had never happened to me...UNTIL TODAY!

We went to get gas in the van, and then stop at Rite Aid. (I know, I know, big excitement!) All of this stuff on my table had a total sticker price of $65.37. So if you went to the store, nothing was on sale, you had no coupons, you would have paid over $65.00.

Well...I paid.....drum roll please.....

$3.29!!!

I know! Amazing! I saved $62.08. That's INSANE. Basically, I just looked at the Rite Aid ad very carefully, found some coupons online, plus a $5.00 off a $25.00 purchase on Rite Aid's website.

In their ad they had some things on sale, including hair color. It's Loreal, which I use when I do "normal" color, and they had an in-store coupon for $2.00 off, and I had an online coupon for another $2.00.

Just for transferring a prescription (you bring in the pill bottle, they call the other pharmacy, get the info and fill it) I got a $25.00 Rite Aid gift card. CRAZY! The script cost $3.80. I know some of you are shaking your head thinking, this is so stupid to write about...But I am EXCITED! I was trying really hard to get it down to zero, but I didn't quite make it. So cool though.

Anywho...that's about it...I'm headed off for a nap. I'm doing MUCH better, but I still tire out quite easily.

Oh, this is for you, Blue & White....I am completely disgusted with my GP, and will be looking for a new one. I have had to kiss a lot of frogs before I got my princes...(the good docs I have!)

SO....Hope this upcoming week brings lots of good surprises!

Thankful

I have much to be thankful for always, but these last few days have been awesome!

Thursday, my mom and sister Lori came to clean my living room and dining room. And I mean CLEAN. Like wash the curtains-wash the windows clean! What a blessing. My poor sister was already having an allergy attack BEFORE she got to my house, which is an allergen-impregnated monstrosity.

THEN, my mom took Jacob home with her to spend the night. Jacob was so excited. We were supposed to go to Ann Arbor yesterday, but I was feeling about 70%, and I didn't want to go back to about 15%, so we're waiting a week. But my mom took Jacob anyway. He had a blast.

Doug and I finally used a gift card we had from Christmas and went to the Grillhouse (for those of you not from around here, it's been featured on the Travel Channel). Then we got home and watched a movie on the big screen that we couldn't watch if Jacob had been home. Usually we have to watch these on our 7" portable DVD player in Ann Arbor!

Then Friday, Doug called to see if I wanted to go out for lunch, and to Pamida and Rite Aid (had some coupons and 2 Pamida gift certificates for $10.00 each). So we did, and what would have cost us $40.51, we paid $6.08 for. IIIII know! That's a savings of $34.43. Crazy!

So anyway. It's been a great couple of days, and between Shawn, Doug and my parents, I have been able to get the rest I needed to get over this stupid sinus infection. I was still at about 70% of my normal yesterday, but today I'm hoping for a little more. We shall see!

OH! And best of all!!! My sister's husband Phil FINALLY got a new tool and die job! He's been driving a milk tanker truck for over a year. Not great money, and NO insurance. We have been praying and praying and praying. I don't understand God's timing, but he has a job again, with insurance, and Lori and Willie will finally be able to go back to the doctor and get some much needed allergy medicine!

So....just when I get to the point where I feel God had been silent for SOOO long...He showers me and my family with blessing. Don't give up. YOUR day is coming soon.

You Want Me To WHAT?

So my physical therapist comes over yesterday...very sweet young lady named Katie. She knew I haven't been feeling well, so she just brought some handouts to go over on energy conservation. Oh.My.Goodness. I was like, seriously?? You want me to what?

For example, one of them is to place a folding chair in my mudroom, so that when I have to do laundry, I can sit down, and load it into the washer from a sitting position. Then, I can take the chair out again to transfer the clothes from the washer to the dryer, taking the clothes out of the dryer, and folding them in the other room, sitting again. All I could think of is, "Do you know how LONG that will take?"

Another one was to avoid bending at the waist. I'm like, well, I can't squat because my muscles will give out and I'll never get back up, so how am I supposed to pick things up? Use a grabber. Hmmm....That part I think I could do.

How do you completely rewire your brain? I am and always have been a Type A, faster is better, work harder, be-productive-keep-moving-kind-of-person. In elementary school, my favorite thing on the planet was timed tests in math. The more pressure to be fast, the better I performed. Same with my career before I had to quit. The faster I worked, the faster the work got done, the faster the trucks got out, the faster they got back, etc.

So now, I have to do just the opposite. Even when I feel GOOD, I'm supposed to work like a 90 year old so that I have the energy to do what I WANT to do...like play with Jacob, or bake or whatever. It' stunningly difficult to reconfigure thoughts that are in your hard drive, so to speak. How does one go about changing their personality? (Without mind altering drugs....I DO have responsibilities, you know...)

But that's what's so frustrating about this dang disease. Every single day is different. I never know how much change I will wake up with. So physical therapy has to vary each day dependent upon what I can do.

It was actually nice to hear the P.T. say "If I had a patient with MS, I couldn't make them WORSE by exercising. You, I could make WORSE by exercising!" It's like, FINALLY a medical professional gets it. I have heard SO MANY TIMES (even from my closest loved ones. And I mean closest.) "If you would just try harder. Just exercise a little bit. If you dropped some weight, you know that would help."

You know what? I DO try. If I didn't TRY, and WORK at what I do, I'd be freakin' dead. As in, no longer on this planet. Try harder. Kiss my arse. YOU deal with what I have to deal with for ONE blankin' day and tell me to try harder. I had a CHILD for sh!t's sake. But I don't work at things if they're hard. Right.

And you know what else? I'd LOVE to exercise. I'd REALLY love to swim. But, oh yeah, there's just that one little thing that stops me...perhaps the flippin' HOLE IN MY NECK that would cause me to DROWN?

And yes, I completely agree with you that if I did lose weight it would probably help my overall health. I know it would. Now you just tell my body that: even though you take anti-depressants, insulin and birth control, and you can't exercise, you just drop some pounds."
Yup. I'll get right on that.

Anywho...yeah. Little sore spot there.
So anyway. I'm feeling a little better, but I brought Jacob to Shawn's this morning and it wiped me out! Resting the rest of the day after I get the bills and budget done.

FINALLY

Antibiotics are a wonderful thing. I have been down in bed, totally wiped out and SLEEPING most of the time (that NEVER happens). Last week Wednesday, Thursday, then Sunday and Monday I was in bed ALL day. Yesterday I still felt HORRIBLE. Bad enough to call the doctor and ask for an antibiotic because I was worse than when I went in the week before.

Finally figured it out...I had a sinus infection! Duh. Migraine, face pain, dizziness, then the crud...I'll spare you the details on that....suffice it to say...EEEWWW!! So the chickie I saw last Wednesday at the walk-in clinic (my local doc has a walk-in clinic every day from 5-PM which totally ROCKS), and they didn't call back to harass me or anything. Just called in the script, and in less that 4 hours! LOVE that. I even had to tell them what to write it for because there is ONE antibiotic I know I can take. I'm allergic to everything else, OR it make the MG really bad.

I tell ya, running into a doctor who LISTENS to you....priceless.

Took 2 pills yesterday, one when Doug got home with them and one before bed. Woke up this morning for the first time in 7 days NOT feeling like death warmed over. {breaking out in Hallelujah chorus}

What a relief. My gosh. It's bad enough dealing with MG, life in general, and a 4 year old, then get a sinus infectoin on top of that. Ug. HUGE thanks to Shawn for taking Jacob extra days so I could rest. You are my hero! (Heroine?)

I was a bit jumpy this morning though...bad, bad weather going through. Tornado warming, but it was just east of us. {more Hallelujah chorus} We have a high wind warning til 8 PM TOMORROW night. Doug wants to go to the Lakeshore after work; supposed to have 20 foot waves. I've never seen anything like that! We'll see.

Physical therapy is coming today at 1...I'm still pooped out, but I still wanted her to come...I'm hoping she has my new walker. That would be NICE.

Anywho...that's about enough for now....I'm just so glad to be among the living again! Not the thriving (yet) but at least the living!

Sick

I refrained from posting til now because my mood was so ugly I thought I might scare some people off. Or even scare myself. Somethings are too raw even for me to post. (I know, shocking!)

So right now I have a migraine...probably a sinus infection. I've been sick for freakin' EVER. Had pheresis 5 weeks ago; felt like crap every day since then except about 3. Then last Tuesday night got the sorest throat I've had in years. Now I have the crud. My head is about to explode.

Ya know, MOST days I appreciate still being of sound mind (although some of you who know me REALLY well may beg to differ about the "sound" part). But today I'm thinking, other than the horror for my family (which would suck), why can't I just be bat-sh!t crazy and not KNOW I'm sick?

Whatever. I'm going to eat some soup and go back to bed. Hopefully the doc will call in the ONE antibiotic I can take so I don't have to go back in and expose myself to more of the cesspool of life.

Freaky Friday (well in this case Saturday) Follow

It is time for the Freaky Friday Follow. (Okay, so I am a day late...)


Here are the rules:
Follow both hosts (we are in spots 1 & 2)
Leave a comment so we can return the follow
Answer the questions
Grab the button
Come back and link up

Now for the questions:

1-What have you always wanted to be for Halloween?
2- Do you believe in ghosts? Why or Why not?
3-Where is the scariest place you have been?
4-Would you ever go ghost hunting?
5-Have you every visited a real haunted house/hotel? Did you get any proof that it was haunted?
6-Do you watch any of those paranormal shows on TV? (Reality or shows like ghost whisperer)
************************************************************************************
1-What have you always wanted to be for Halloween?
Nothing specific. We don't celebrate Halloween anymore. We don't make a big deal of not celebrating it...but when you understand how it got its origins, it's pretty freaky. I'd rather not mess with it.

2- Do you believe in ghosts? Why or Why not?
I believe that "ghosts" are spirits. And there are only 2 kinds of spirits: angels and demons. So if someone truly sees a ghost, they very well may be seeing one. But it's not a person-ghost. When people die (again, this is my personal Christian belief based on the Bible) they immediately either go to heaven or hell. Heaven if they believe in Christ, and confess Him as Lord, hell if they do not. (I am not condemning anyone, I am stating what the Bible says.)

3-Where is the scariest place you have been?
Probably a "haunted house" when I was in 8th grade. I was the second to last person in line, and something grabbed my friend and I had to go back and get her. It was horrible.

4-Would you ever go ghost hunting?
Absolutely, 100%, positively NEVER. Again, the Bible says that we don't fight against flesh and blood, but against principalities and powers of darkness. (Ephesians 6) There is nothing "cool", "neat" or "fun" about coming into contact with that, especially if you are seeking it out! I've had enough attacks from satan, I'm certainly not going to go out and find him.

5-Have you every visited a real haunted house/hotel? Did you get any proof that it was haunted?
Nope, nope, and nope. Again, the only way I believe a place can be "haunted" is if demons live in it. And I want NOTHING to do with that.

6-Do you watch any of those paranormal shows on TV? (Reality or shows like ghost whisperer)
Never in a million years. Why would I invite that into my home? Yes, I take this very seriously. I think many people, Christians included, do not understand the gravity of messing around in the spiritual realm. Check out this post about a speaker who was a "Christian ghosthunter."

Phhttt.

You know, if I sit perfectly still, don't talk, don't swallow, don't move or even turn my head too fast, I feel great! But alas, (much to my hubby's chagrin), I do, in fact, need to do all of these things.

Great big thanks to Shawn who took Jacob yesterday so I could sleep and rest (after I found my cell phone which is a totally different post). All I can say is that I never knew MG effected the brain so much. I'm so forgetful. It's like borderline delusional.

I'd like my brain back, please.

Not to mention a little bit of health.

So to totally change the subject, I have about 35 (I think) posts left to my 500th post!! Can you believe it???? I can't. It's awesome. I will be having some kind of giveaway...that's a big deal to celebrate! So stay tuned.

And in the meantime, please pray I get better quickly! I have some wonderful plans next week that I would like to participate in.
Thanks!

Sick

Ug. Last night when I turned the furnace on my throat got super dried out. Didn't really HURT, it just felt really dry. Well, during the night it got sore, and this morning I have probably the worst sore throat I've had since before I got my tonsils out (at age 25).

My poor baby had shots yesterday...they had so many needles! After I got home I felt like the worst mother on the planet for not telling them to only do 2 and we'd come back for the rest...yet Jacob hates shots so much...it's so physically draining because we have to literally hold him down. Which is EXACTLY what a mother wants to do to their child...hold them down while they freakin' scream. The only other time I felt worse was when Jacob was in the NICU, on a vent, and was trying to cry and there was no sound coming out. I wanted to just die. It was horrible.

And the nurse was a b!tch. Sorry, but she was. Some people should just NOT be allowed around children. Or other PEOPLE for that matter. She would have made a much better vet tech. Ah, I know...morgue attendant. Perfect job for this woman. I don't even know her name, but she was very unpleasant.

Contrast to while we were checking out, a lovely young nurse was talking to Jacob and she asked him if he had gotten his stickers (no, so she gave him like 5), she gave him a ball, and carried him because his legs hurt...I can't for the life of me remember her name...maybe Heather? Anywho...she was amazing...so whoever you are...THANK YOU!

OH! And then, the receptionist/biller lady at the front (Amy) asked if he could have a cupcake! She's so sweet...I have to get blood drawn a lot, and she's the best....she fills everything out and stuff, but also treats you like a human being, not a form.

THEN we took Jacob to Pamida and got him toys. Yeah, no guilt here. The kid is going to want shots ALL the time now!

Anyway. If you could PLEASE pray that my throat does not get serious, or even any worse for that matter....I was JUST starting to feel a little better, had a few really good days....and here we go again. This diesease sucks.

Random Letters

Dear Mr. Sandman,

MUST we have this discussion YET again? You obviously know where I live because my husband sleeps like a baby. Speaking of baby...my son has a new room. Is that throwing you off? Am I always in the bathroom or something when you come around? Because this is gettig ridiculous. Must. Have. Sleep.

Sincerely,

Half Crazed From Insomnia

Dear Dogs,

You are on a short leash, no pun intended. I love you, but I hate the hair, the mess, the stink and all the "gifts" you bring me. I wish you no ill will, but know you will NOT be replaced. Just so ya know...I HATE it when you're on our bed. Daddy lets you, but Mommy is not a fan. Remember that when it's treat time.

Sincerely,

Your Dubious Owner

Dear Hips,

You can stop causing me ridiculous, annoying pain any time now. Really. I got the point. You have arthritis. I, however, have several OTHER issues vying for my attention. I recognize your need for attention, so I am acknowledging you. Now STOP!

Sincerely,

I Got The Point

Dear Espresso Machine,

I love you. You have helped me get through the bleakest of days. Whatever would I do without you? I cannot bear the thought.

Sincerely,

Your Biggest Fan

Dear You-Know-Who,

Thanks for pulling your head out of your butt in time to salvage my sanity.

Much Love,

Me

Dear Jacob,

I know you love your Mommy. You don't have to get out of bed, come into my room and put your tiny little nose in my face 16 times during the night to tell me. While it IS the most precious little nose I have ever seen, at 2 AM, when I've JUST fallen asleep, it's not so precious. Next time, why don't you tell Daddy how much you love him? I'm sure he would love that. And while I love to snuggle, 5 AM isn't exactly the right time. We seriously have to work on that.

Sincerely,
Mommy Who Loves You Forever and Ever and Always

Reality Smackdown

Nothing like getting hit upside the head with reality!

Wednesday I had another AWESOME day. I went to an old (as in known-forever, not age) friend's house for the day. I felt so good I was able to drop Jacob off at Shawn's, drive about 50 minutes to Linda's house, stay there til almost 5, and drive home! She made the most awesome lunch...AND dinner for me to take home. Plus she is making a bunch of meals for me to put in the freezer! THANK YOU LINDA! You ROCK!

Linda has such a beautiful house...so clean and NOT dusty and bright and nice decorations that aren't make of plastic or stuffed animals. She has two tiny little dogs that do not shed or even bark very much. I like the whole house, but the bathroom is AWESOME. It's painted bright teal, with white trim, and the back splash is like teal and chartreuse rectangles of glass, with white grout. It's so nice and bright and just simply lovely.

Linda was such a wonderful hostess...I just got to rest and relax and enjoy adult company. And it was so QUIET. Oh, the quiet. Peace. Quiet. {Sigh}.

Cut to pulling in my driveway:

My driveway is gravel, so of course dust is flying everywhere. Moose and Molly are barking hysterically, Moose running toward the van jumping on it, and Molly getting her chain all wrapped up on everything possible. I'm already abhorring the intrusion of this hideous barking on my peace-lulled brain. So I'm screaming at Moose through the window to get down. Thankfully, he does.

I'm wearing light khaki pants and and a nice pink shirt. Very bright and cheery.

And. Here. Comes. Blackie. It was like a bad movie in slow motion. I can see he's been in the pond, but he's muddier than I've ever seen him. Have you ever really looked at pond mud? It's black. And it stinks. Bad. It's frog crap for crying out loud!

So here's Blackie, wet, muddy, running at me like a bat out of h#!!, and I can see it happening, super slow-mo, and I yell "Noooooooooooo" and he jumps up against me. (You KNEW it was going to happen!)

I leave everything in the car and go into the house to get changed, and throw my clothes in the washer right away. I can already smell the nasty pond mud smell on me. Eeewww!!! I get changed, mumbling under my breath how I should just get back in the van and run away, back to the quiet, clean environment from whence I came.

I get my walking stick since I'm going out into the yard to find my son. I hear Doug on the tractor, so I know Jacob's not far behind. (Blackie, by the way, is howling away in his cage.) I go out the door, head toward the tractor sounds, and stop dead in my tracks as I come around the garage.

Doug is on the tractor, backing into the pond and pulling the bottom mud out and down the yard. He's apparently making the pond BIGGER. (If you will recall, he made the pond for the ducks which we no longer have. One DROWNED (how the heck does a duck drown??) and the others either ran away or got eaten. Even so, we clearly need a larger pond.)

I see Jacob, HIP DEEP walking back and forth through the muck piles that Doug has scraped out of the pond. Jacob sees me and starts running toward me. I was like, Ohhhh NO you don't! So I put my arm out and caught his head in my hand. He runs back to the mud, laughing like a little wild man, chasing and catching frogs.

I saw Doug, and just shook my head. Jacob comes up to me with a HUGE frog he just caught. I was like, um, no thanks. So he put it in his "bug cage" and wants to come in. I don't even let him up the steps into the mudroom before we get his clothes off. Shoes: black. Socks: black. Jeans: black. Smell? Repulsive! Then there's the muddy frog cage he won't release from his tight little grasp.

I get his naked butt into the tub, and let him put the frog on the hamper in the bathroom (Hey, he wanted it in the TUB with him!!) Got Jacob hosed down in the shower, then made him soak in the tub...for 3 hours. Just kidding. It was more like 15 minutes.

Doug came in rather sheepishly, apologizing over and over. I was like, hey. He's a boy. He's catching frogs. He will remember this day forever. What boy wouldn't want to grow up in a place like this where he can run and play and jump in the mud and catch frogs? Yeah. Too bad Mommy has to live there too!!!

The juxtaposition was almost more than I could bear. I couldn't have written a more perfect set-up for my return from the pristine day of visiting to the return to the middle of the sticks.
Well, at least I know my son is having a happy childhood. In the end, that's really the most important thing. Right???

Sunday and My Hubby

I just read a post from my sweet friend Margaret that broke my heart. You can read it here: http://networkedblogs.com/90KrV During Invisible Illness Week, Margaret came acoss the statistic that 75% of marriages with one chronically ill spouse end in divorce. I was shocked. I figured it was high, but not THAT high. She was one in the 75%.

I know that you've all probably heard all this before, but it just reconfirms once again that my husband is a man of character. He is not perfect; nor am I! But he has the important things: Integrity. Character. A wonderful work ethic. A heart for God. He loves me and Jacob with all of his heart, and there is never a doubt in my mind Doug will be with me until one of us is gone from this earth, or until Jesus comes back. And the comfort and reassurance that goes with that when you are chronically ill....there's just no price you can put on that!

Now, on to Sunday. I had said yesterday that Sunday was a good day too. I went to church again. It's very traditional, very sedate...but they preach the Word, and they seem stable. We have been to nothing but "undemoninational" or "start-up" churches in the last 10 years, and that certainly wasn't working for us, so we're getting back to the basics. Doug and I were both raised in quite tradtional churches, so we're going to try this one for a while and see how it goes.

Our Maple Trees

Then Sunday late afternoon we decided to go out for a little ride and get ice cream! It was such a beautiful day. The color this year out here is GORGEOUS!

This is the view of the northeast woodline on our property. Amazing!

We ended up driving right by good friends of ours, so we stopped and said hi...then finally got around to the ice cream, and back home. It was a really nice day!

Here's to tomorrow being just as good!

Today Was NOT A Good Day....It was GREAT!!!

Although you never would’ve known by the way I felt when I woke up. Thank God for coffee. WOW! Must have been extra strong, because I woke UP! And I felt good. Did ya hear that??? GOOD!!!!

For the first time in over 3 weeks, I had a good day. A GREAT day!

Before 11:00, I vacuumed the whole house, (main floor) and CLEANED THE BATHROOM. I have not done that in FOREVER. I think my new breathing medication finally kicked in…. My pulmonologist switched me from Advair to a liquid similar to Advair that I can use in nebulizer. That way, instead of a powder I inhale through my trach, I get ALL the medication for sure right into my lungs.

I’ve been on it for 4 days…and it wasn’t doing a thing. I was bummed! And ready to switch back to Advair. I was having trouble breathing, and I was like, oh my GOSH not again. But today…viola! I can breathe!

THEN this afternoon I did the dishes, and then after dinner I took a shower! All in one day! Are you KIDDING me??

My GP suggested physical therapy. I am skeptical, since MG is a disease in which the muscle is weak already, and gets weaker still with repetitive motion. What is PT? Repetitive motion! The PT was so cool though. It was actually a guy I used to go to church with. That was a surprise.

But he totally UNDERSTOOD. He didn’t push, didn’t tell me that exercise would make everything better…it was an amazing feeling to have someone in the medical world “get me” the first time around. He did some strength testing on my legs, and I could do one thing, then I had to rest my legs. And today was a great day! It was discouraging, but we will continue to see if it gets any better. I have my doubts, but we agreed on giving it a month, if it doesn’t work, we will have to discuss pain management.

The thing with MG is that one day I may be able to walk up the stairs and not have any leg weakness, and the next day I may walk up and have to stop and rest three times so my legs don’t give out. It’s crazily inconsistent, which drives me INSANE. I’m a planner!!!

Anyway. Yesterday was an awesome day too, but I’ll write about that later because this is already becoming a novel!

So…YAY for me!

My Previous Post

So I got a bit of feedback that my post yesterday may have been a bit harsh.

I re-read it. I don't think so. I'm not a bitter, shriveled up woman. I'm just really frustrated and ticked off that so many churches can't get it right.

I met a pastor once (at McDonalds believe it or not) and we got to talking. He invited us to his church...I was asking questions....how big is it, what denomination, what kind of music, etc. Then I asked if they had any kind of protocol in place for the chronically ill. He looked at me, hesitated for a moment, and said, no, we really don't. Kind of like, hmm...hadn't thought of that, not like, Um, oops, no....stutter, stutter.

So I harp on this issue? You'd better believe it. I'll harp on it until the day I die. If it does no good for me in this lifetime, fine. But I may be helping someone out there somewhere who reads this and decides they need to start helping folks out in their church a bit more.

It's not just about ME. It's about chronically ill people everywhere who can't get to church. They don't know someone to pick them up. They can't get out, but want to participate in communion. They didn't ask for what they live with and don't want to be punished for it.

I'm working on some kind of plan, that I could mail to churches, or go and speak to churches about this very vital ministry that is lacking in many places. My mom's church has no problem in this area. The church I grew up in handled it fine. So I know it can be done!

Anyway...I'll get off my soap box for now. But I am working on something to help churches help chronically ill people....I'm not just b!itch!ng about it while I do nothing.

If YOU are chronically ill and have any ideas that would help YOU, PLEASE either email me or leave it in the comments section.

Alone in a Sea of Women "Just Like Me"

Joanna and I, well, let's face it, have not had great years. And we're not the kinds of people who gloss over issues for others comfort. Last night we went to a group of women meeting together. I got to see my friend Kim who I haven't seen forever. But I walk in with Jo, who has a FAB new do, by the way!!!, and just felt yuck. I was not feeling well to begin with.

But people who have known me for like 6,7,8 years were asking me what was wrong and if there was anything doctors could do about it. I was like, really? I have Myasthenia Gravis, remember?
Oh.....

Anyway, there was a sure highlight and the bit of a lowlight. The lowlight was a few women who spoke about how busy every one's lives are{check.} And that sometimes you just have to remember that not every one's problems are YOUR problems to fix or solve. Two women talked about the same thing. (Testimonial type thing.) And I really do get what they're saying. You can't take the burdens of the world on your shoulders. You can't MAKE some one's burden YOUR OWN. But where in the Bible does it say you don't need to help?

See, this is my frustration. This has been my frustration for 10 years now. I have had this illness for 10 years (well 15, but I was hospitalized 10 years ago...almost died, ect). The woman at that church that had been my best friend told me I was selfish to want help and I needed to repent. This was around the same time that I was so weak I actually fell. off. the. toilet. Yah. But darn my selfishness.

Bear with me a moment: the church I grew up in was not so great from a preaching-teaching standpoint (which is not acceptable.) The music was ho-hum. People piled in the back first. However, when someone had surgery, had a baby, death in the family, the women cooked. They took care of children involved. They had a system in place, and it worked. Do you think my mom, with 5 children in private school had the time or money to do this? Probably not. But she did. Every. Single. Time. But we always had money to pay the bills. There as never a question of "Are we doing anything for so-and-so who just had such-and-such?" It more was like "Who's doing what for so and so when that baby comes?"

And they just did it.

Granted, the chronically ill in a church are probably less than 25%; even less for people like me who are disabled completely by this disease sometimes. And some folks are really good at sticking by ya....for a few weeks. So if these newer churches springing up hither and yon have no structure to begin with, and no plans in place to "feed the hungry, clothe the naked, and visit the sick and imprisoned," which if I remember correctly is what Jesus commanded us to do.

I never read "make sure you have this program, or that new sound system..." Would a teenager benefit more from going to youth group, playing games, playing music and hearing a message, or from going to a Soup Kitchen once a week and talk to the people there, who may really need Jesus. I'm just sayin'.

It just frustrated me to no end that some women last night will hear what I heard, from Christian women they look up to: If you're stressed, you don't have to take on other's problems. What about Galatians 6:2? 'Carry each other's burdens, and in this way you will fulfill the law of Christ.'

Matthew 25: 35-41 For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.’
“Then these righteous ones will reply, ‘Lord, when did we ever see you hungry and feed you? Or thirsty and give you something to drink? Or a stranger and show you hospitality? Or naked and give you clothing? When did we ever see you sick or in prison and visit you?’
“And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’
“Then the King will turn to those on the left and say, ‘Away with you, you cursed ones, into the eternal fire prepared for the devil and his demons.

I know I feel strongly about this and I've harped on it before. But from my perspective, it's devastating when you have NO ONE to call to help you with your energetic, rambunctious 4 year old because you can't seem to find a church who will take you in for who you are. When you have ONE person who is willing to watch him almost anytime, but if she's not there...I have been through 3 churches in 10 years who couldn't seem to do this. Two of them even told me told me I was selfish to ask for help. I physcially couldn't care for my self on some days, let alone my child, but I was selfish to take away from someone else's need. Shame on me.

I reconnected with an old friend of the family on facebook, and within a month, she was asking what she could do, and last week brought six frozen meals. (She lives an hour away from me.) I hadn't seen this woman in literally 30 years. I know churches are busy. I've been intricately involved in growing 2 of the 3 we attended. But if the family of God can't be there for you...who will? If you're SO busy and stressed that you can't help a fellow brother or sister in need, maybe you need to take a tough look at your schedule. I know I'll probably ruffle some feathers, but if my point gets across, it will be worth it.

"You've made your point," you say. "So move on." That's just it. I wish I could. There is still no system in place, and in MY Bible, it says it is the believer's job to just do it. I help anyone I can with whatever I can. I may not be able to help you clean your house, we can certainly give you some fresh meat from Doug's latest butchering session. : ) I make and send cards for card ministries, when I'm involved in a church I do what I can from home....so I'm not just saying, here I am, I'm a lump and want to be waited on handand foot. HARDLY. And anyone who REALLY knows me will be laughing right now.

I am fortunate to have 3 friends who really haven't and hopefully won't leave my side, even though they go to different churches. We still don't go yet, because 1. can't figure out where to go, and 2) both Doug and I are skittish. History is supposed to predict the future, so the future tells us there's nothing before us to go to either. So stay in spiritual limbo. And it's very sad, because I feel very, very isolated, and thought that God's children would help us. So if you know someone who needs help, HELP THEM. Yes, pray for them. Maybe even send a card. But a prayer can't chase a 4 year old, and a card can't clean up after said 4 year old goes potty all my himself, and all the good wishes in the world ain't gonna get dinner done.

ANYWHO...on to the fantabulous Melissa Mashburn from Mel's World! She was the guest speaker. She is HILARIOUS, ya'll. I mean put-down-your-drink-secure-any-sharp-objects-funny! It was so fabulous too, that even though she was from Ft Lauderdale she was actually a brunnette! An adorble fluffly, make you pee your pants funny brunette who was so down to earth I wanted to simply kidnap her to stay up here. She and I are alike in that what you see is what you get. I don't wear a mask anymore...I won't put on aires in the hopes of impressing someone...I'm good enough for my God so there ain't nobody on this earth that I need to impress.

It wa truly a pleasure to meet her, and I hope you all go check out here page. It won't be a waste of time, trust me.

Thankful Thursday

Oh goodness.


Yesterday was not a great day. I was so frustrated. I was angry. Disappointed. Scared. Doubtful. I'm homeschooling my 4 year old son, Jacob. He JUST turned 4, and we just started "offcial" school this past Monday. The first 2 days were awesome...yesterday was a debacle. Mess. NightMare.


I started thinking, what the heck am I doing? I have a chronic illness (more than one really, but who counts?)....I already can't keep the house clean. I already have virtually no life outside the 4 walls of my house. Sometimes I need a total break from Jacob because he's so loud and busy and energetic, and now I'm going to HOMEschool so he's here ALL. THE. TIME??


But...I could probably give you 50 reasons RIGHT NOW why we want to homeschool, not the least of which is that Jacob is super smart, and would be bored to tears in public school. So the top three would be: first, so he can learn to the full extent of his ability, second would be to keep ME from all the nasty germs he would bring home. Third, and really, this should be number one, is that we simply don't agree with a lot of what public school teaches. We don't want Jacob exposed to things he doesn't NEED to be exposed to: temptations he would only face with 20 of his peers around him every day, the coarse language and joking, the drugs, alcohol, all that garbage. And I've taught in public school, grades K-8, so I know what happens. And that was 15 years ago.


I'm exhausted but not really sleeping....this morning I was up at 4:37AM. Two nights before that I got about 3 hours of sleep, 15 minutes at a time. I'm on medication that has side effects that cancel out other side effects that have side effects that....so who knows.


Then why, you ask, is the title of this post "Thankful Thursday? Seems like all you have done so far is whine and complain."


Point taken. I just wanted to set the stage and let you know that I don't FEEL particularly thankful. SO when I get this way, I do posts like this, and list the things I AM thankful for...to try get my attitude out of the crapper. Sometimes it works, sometimes not, but it's worth it. God has done so much for me...the LEAST I can do is remember to thank Him for it.


1. I am thankul that I have a healthy, precious, smart, talented and energetic son who thinks I hung the moon.
2. I am thankful that I have a husband who has stood by my side for over 10 years, watching me struggle with this illness and never walking away. Has he been perfect? Of course not. But I know many a man who would or could not have dealt with what he has over the last 10 years. I love you honey.
3. I am thankful that I have this computer that I get angry with every other minute because it connects me to friends old and new...and keeps me connected in a huge world that I can't physically get into more often than not.
4. I am thankful for medication, and treatments, while unpleasant at times, that allow me to live some semblance of a "normal" life.
5. I am thankful for a God who doesn't give up on me even when I give up on Him. Who isn't disappointed in me, because He made me, and knows my every thought before it even enters my mind. Who, by His Grace, saved me from an eternity in hell, apart from Him, even though I didn't deserve it. Who chose to allow this disease to enter my life, that it may bring me closer to Him...and maybe along the way, touch a life or two.

Wordless Wednesday (almost)

This is Blackie posing for one of those wierd calendars where the animal noses are huge
That was yummy!

My dog Moose doing an impression of Jack Nicholson playing the Joker.

Sowing in Tears

"Those who sow in tears
will reap with songs of joy.

He who goes out weeping,
carrying seed to sow,
will return with songs of joy,
carrying sheaves with him."
Psalm 126:5-6

Joanna and I are doing a wonderful Bible study on the book of Ruth. There is so much to get out of such a small book of the Bible. Wow. This week, one of the days talked a bit about this passage. I had "discovered" this passage in 2002, while I was still very, very ill, and trying to get used to my new life as a myasthenic with a trach. Quite the adjustment.

What I used to focus on was the tears and joy part. I was like, well, this is a good thing...at least I KNOW that while I'm crying and crying and crying I will have joy sometime in the future.

I TOTALLY missed the point. It's the basic sowing and reaping principle. At its most basic, if you plant corn, you will grow corn. If you plant potatoes, don't expect carrots.

So even though I may be weeping, I still must sow. Even though it hurts, and I'm tired, and lonely sometimes, and sick, and busy, and.....I must sow if I want to reap. This passage is just telling us that even if we are weeping while we sow, we can still reap joy.

And I have just one thing to say to that: Hallelujah. Because if this was all there was....if the weeping never brought joy....

But sow. Take the seed you have, whether it be kindness, prayer, compassion, finances, support (physical, emotional or spiritual), and SOW. Because when you do, the harvest will come, and the harvest will be filled to overflowing with joy.

When?

When will I learn that I can't "perform" like I used to?

When will I stop letting people make me feel "less than?"

When did I become this person who can't think quickly, or remember more than 2 things, or make mistakes I never would have made, or....

Today we were going to start our first day of "real" school with "real" curriculum. I was going to write my own, but obviously that didn't happen. Last night I probably got a total of 3 1/2 hours of sleep like 15 minutes at a time. If you ever want to feel like you've got a hangover without having a drop the night before, I highly recommend this process.

Jacob's favorite phrase right now (especially, it seems, at 3 AM) is "Mommy I want you!" Now granted, the first 2, maybe even 3 times you hear this, it's heart-warming. Your precious child is confirming his love and desire to have you near him. Who doesn't want that?

I'll tell you who. ME!!! By 4 AM, when you've heard this phrase 672 times, along with the perfectly pitched whine that doesn't quite break glass, it's not quite as endearing as it once was. I spent all day in a p!ss!ing contest with Doug yesterday. (Sorry for the vernacular, but that's exactly what it was.)

He was grouchy, and I was in a "I'll show you I don't need you to do anything and I can do it all myself" mood. So not only did I write Jacob's goals for the entire school year, but I also wrote our daily schedule for school (like what days we do what subjects), MY daily schedule (which this morning looks hysterical...I don't know what the h#ll I was thinking....this is like a 25-year-old-soccer-mom-Carol-Brady schedule. What a joke!) and the individual daily schedule for the first week (individual concepts for each subject on each day).

When will I stop comparing to other moms?

I separated and folded laundry, got roast ready and put in the oven, played with Jacob, got his meals, yadda, yadda, yadda. I just keep pushing and pushing.

I hate that I can't perform like I used to. I used to be the quickest one, not the slowest. I used to be able to be typing a pickup into the computer, be on the phone with a driver, answer another driver on the radio and still listen and understand the conversation going on at the window!

Now I can't chew gum and tie my shoes at the same time. And it makes me angry. Which is stupid, because I've dealt with this b.s. disease for over 10 years now....which makes me even angrier that I can't get it under control....

When???

In Memory of Linda...You Are Deeply Missed

Today my heart is heavy once again. Two years ago today, my very best friend had the best moment of her life. I had one of my worst. It was two years ago today that my dear, sweet friend Linda went to be with Jesus. She fought MS for 2 years before a Stage IV cancer diagnosis. She lived 11 months and 1 day after her diagnosis.

Oh, how I miss her.

Linda was the kind of friend EVERY girl needs. She just KNEW me. Half the time I think she knew me better than I knew myself. The phrase “still waters run deep” is a perfect expression to describe Linda. She was quite a “still” personality, but her soul was deep and rich and wonderful.

It’s kind of funny that we were even friends, really. Linda was so quiet! I was (am) so loud! Linda was an introvert for the most part, I am an extrovert. Linda would just go with the flow, I would make waves. She sometimes wouldn’t stand up for herself the way I thought she should, so I would butt in and say something in her defense. She was calm and beautiful in a way no other friend of mine has ever been.

Even though we were quite different, we did have a lot in common. We were both single (for many years of our friendship), we worked together, we loved to eat out (so much easier than cooking!), we both loved to do Creative Memories. We were both insecure. We even had the same middle name! We both dealt with rejection issues, we both loved music and most of all we both loved the Lord.

Linda was the maid of honor at my wedding. Honor is another word that describes Linda well. She truly was one of a kind, and my life will never be the same. There is a hole in my heart that will never quite close; it is smaller than 2 years ago, but I am forever altered by her death.

Before she died, neither of us would admit that we both knew she would. We said our goodbyes slowly. We reminisced over the past 12 years of our friendship…the good and the bad. We only had one fight in 12 years. It was horrible, and we never did it again. We sent “remember when” e-mails back and forth for weeks. It was extraordinary. It was excruciating. It was the beginning of the end here on earth.

Linda was such a part of my life it was like an appendage was severed when she died. I didn’t quite know how to function; it was like she had always been there, and now she was gone…. I was lost.

Although I had grieved for 11 months and 1 day, she was now truly gone. I was reminded again of the pain I experienced when my sister was killed when I was 16. I felt as if another sister had been taken.

I celebrated for Linda however! She was pain free. She would never cry again. She would never feel insecure or rejected again. She would never end up crippled or wheelchair bound from the MS. She would never suffer. Ever, ever again. She would soar. She could finally embody the angel I saw in her all along.

So to my dear Linda: I miss you more than a thousand words could describe. Part of my heart will never heal from the space that was solely yours. But we have hope, sweet friend. I WILL see you again. We will tear up those streets of gold just like we used to tear up the concrete ones down here. Healthy. Whole. Happy.

And together once again.