Wednesday, December 31, 2008

Happy 2009!

Wow. That sounds so strange. That we're even in the 2000's is crazy. I liked 1987. Or '88. Or '89. My 17th summer was the best of my life (pre-marriage, of course!). Freedom, fun, and a really cute boy! : ) I wouldn't trade my life now, though, for anything.

Nine years ago I was just out of the hospital (U of M), sleeping in a hospital bed in my living room, had been married for all of 4 months, had a "temporary" trach, a feeding tube, and had no idea how I was going to live life as a woman with a debilitating, chronic illness.

If you had told me then that I would, in 2009, have a terrific house in the country, a still faithful, supportive, loving, ingenious husband, a beautiful, perfect, smart, amazing 2 year old son, be able to drive on my own again, even do my own hair and make-up again, I wouldn't have believed it. But through so many faithful friends who prayed and prayed for my recovery, and by the grace of God, here I am...with a wonderful life.

Don't get me wrong, it really stinks sometimes. I have plenty of days when I think, how did this happen? Why me? Boo-hoo. There are times of deep am I going to take care of my child??? Times of despair...I can't seem to do anything today. Times of anger...WHY, WHY, WHY??? It's not fair!! It's extremely frustrating to constantly make plans only to cancel because I'm too weak or tired. That doesn't help the attitude!

But God in His ultimate wisdom decided that this is something I would go through. That this life, this crazy, wonderful life of mine was planned just for me. God knew everything that I would go through, and even more importantly, it seems, how I would react. And He loved me anyway. I should have been dead, more than once, while going through the diagnostic process. The carbon dioxide in my blood was higher than Jacob's was when he was on the ventilator, and I was still working 50 hours a week.

I got staph pneumonia (MRSA) in the hospital, and almost died again. They trached me to get me off the vent to get rid of it, and thank God, it worked. I was so, so sick. To see me now, well, it's nothing short of a miracle.

Even when things are falling apart, and I feel sorry for myself, and miss all the things I want to be doing, I try to think back to that time. I was on the brink of dying, and now I am definitely living. I try to remember that all I see is my tiny corner of the BIG picture. God sees is all, and sees how all the pieces of this puzzle called life fit together. We all create this huge panorama of scenery, this canvas of living, together. What you do, how you live, how you react, REALLY does affect others.

May God Bless you all in this New Year, and may you be reminded of God's unfailing, faithful love for us all! Happy 2009!

Wednesday, December 24, 2008

Good News from Nanuk of the Great White North

I called the arthritis doc yesterday to get the rest of my test results back....GOOD NEWS!!

All of the tests for connective tissue diseases and serious forms of arthritis came back NEGATIVE! Merry Christmas to me!

I do have a vitamin D deficiency, and am still anemic, so I have to follow up with my PCP on that. Big whoop, I say!

SO. It's more than likely the reactive arthritis, and by the time I get weaned back down to my maintenance dose of prednisone for the MG, all of the symptoms should be gone. : ) I have to go back in 6-8 weeks to check my vitamin D levels, sooner if I have any problems.

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!

Oh yeah, and we are BURIED in snow up here. We have over 40 inches on the ground, and are supposed to have more coming today, but it's stopped for now. Just call me Nanuk!

Have a wonderful, blessed Christmas. PLEASE remember that we are celebrating Jesus, that HE is our perfect Gift.

Merry Christmas!!

Monday, December 22, 2008

I don't remember moving to Alaska!

My GOODness. I look out the window and see nothing but white. Oh, and a few dead brown branches here and there. We here in Michigan are wrapping up an official Blizzard! Whoo-hooo. Doug's talking about tying a rope from the hosue to the chicken coop like they did on LIttle House on the Prairie so he doesn't get lost. Or not.

I called my mom and dad in Florida last night to see if they were watching the weather... They sometimes keep up with what's going on up here. They had no clue...told me they were sitting in their shorts sipping iced tea. Well.

Then she said, "But it's going to be cold tomorrow!"

Me: Oh, like, 60?

Mom: Oh, no, like all the way down to 46 at night and only up to 58 during the day! And there's supposed to be a 20 mile an hour wind!

Me: Oh my GOSH! Not a 20 mile an hour wind! It's 30 BELOW with the windchill here. It's supposed to be a HIGH of FIFTEEN tomorrow.

Mom: Well, at least it's supposed to be sunny and blue sky here.

Me: Well thank God. Otherwise I would have feared for your safety!

But seriously...I'm glad they are there and we don't have to worry about them driving or walking in the snow and falling or anything. Dad's health isn't the greatest, and he does much better there.

Also, there was a horrible 100 car pile-up on I-94 last night that I'm sure most of you are aware of. Miraculously, there was only one fatality, but to that family, I don't think they feel the miracle. Please keep them in your prayers, this close to Christmas especially.

On a much lighter note, can someone please explain to me why people think a TINY car can get through 4 foot snowdrifts down the middle of a rural road that hasn't been plowed? Yup, right in front of our house. Our road was drifted shut, yet here comes this little car...."I think I can I think I can." I'm like, ya moron, NO YOU CAN'T! I don't get how people who live in Michigan seem to "forget" how to drive when we get the first huge snow. Come on people!!

Amazingly we have only had 2 slide-offs onto our property so far this year. Last year we had a total of 7. People come flying down our road and end up losing it, for whatever reason, on either side of our house. Maybe for my enjoyment, I don't know. (No one is ever hurt, unless you count pride).

Anywho. Stay safe, and stay warm!

Friday, December 19, 2008

A Funny

Well first I have to say my eyes are driving me crazy!!! And I had to take my trach out THREE times last night because I just wasn't getting it set in perfectly. ARGH.

BUT. I was busy ALL day long, and I had energy ALL day long. I've been organizing my Creative Memories stuff with the influx of things from's like I had so much I was just getting overwhelmed and had no idea where to I spend most of the day separating stickers and putting them in little vinyl flappy things in a binder. (Yes, that is a technical term).

I also sorted all my paper by color, and then even more so by primary and secondary colors. (Okay, so the organizers out there (and the OCD folks) are salivating at my techniques, and the rest of you non-organizers are shaking your heads...maybe even scoffing!!) I was explaining this to Doug, and he got all sarcastic and eye-rolley (another technical term). It was then I realized maybe not everyone shared my love of organization.

Then after supper I made a double batch of cookies for my father-in-law! Oh, PLUS I cleaned my dining room and living room in the morning and washed a ginormous load of dishes! For me, for one day, that's AMAZING. Oh, AND I took a shower! Most of the time I could do maybe ONE of those things in a day. So even though my eyes are crossing, my energy is up for now!

Anywho. I read this in the Reader's Digest and it gave me a chuckle: (it's probably not word for word, but here goes:)

A new monk was asked to copy the old manuscripts. He noticed he was copying from a copy, not the original, and said something to an older monk. "If there is an error in the copy, I will copy the error and it will continue." The elder monk agreed that maybe he should go check for the original texts so they can be accurate.

As time goes on, the young monk starts to get concerned about the older monk, so he goes to check on him. As he approaches the transcript room, he hears wailing and sobbing from the older monk. He rushes in to hear the monk say, "It says CELEBRATE!!"

Hehehehe. Have a good weekend!

Wednesday, December 17, 2008

Being Thankful

Okay. I'm trying to pull my face out of the dust, stand up, and turn my face toward heaven. It's NOT easy. However, I am starting by listing things I am thankful for, because I DO have many.

Here are just a few:

1. Friends like Leigh and Joanna who are I know are there for me 24/7. They listen, they pray for me, they watch my child : ) and I know without a shadow of a doubt, they are the hands and feet of Jesus. You may never know how much you mean to me. I love you both very much.

2. My amazing husband, who tolerates my mood swings, my medical bills, my shifting attitude, my disease, and who, when he looks at me, honestly sees a beautiful wife who makes him happy.

3. My precious, perfect, beautiful, smart Jacob. He amazes me every day, and takes my breath away. That I had anything to do with creating this wonderful miracle doesn't even make sense.

4. My God, who puts up with my tantrums and kicking and screaming and whining and complaining, and loves me anyway.

5. My warm house.

6. The security of my husband's job.

7. That we can pay all of our bills, and still buy groceries and gasoline.

8. That I have health insurance, no matter what kind it may be.

9. My supportive family, who love me unconditionally.

10. My computer, which connects me to the outside world, to new friends (Hi Teresa), to old friends (thanks facebook!) and to uplifting blogs and e-mails.

Thanks for listening.

Tuesday, December 16, 2008

Update from doctor

Well, I have SOME information. All of the tests aren't back yet, but so far it's good news. My chest x-ray was normal (I'm not sure if that means it's NOT reactive arthritis because he said you can usually see enlarged lymph nodes on the chest x-ray if it is). I do not have lupus, Hallelujah. My liver and kidney functions are within normal limits, which is wonderful news as I am diabetic and taking so much medication that can effect the liver and kidneys. I'm still slightly anemic, and none of the arthritis tests are back yet. They asked me to call back in a WEEK. Good grief.

Please pass the Cheese to go with my Whine

I am going to call the doctor today to find out the results of my bloodwork. Hopefully they will have them and I can relax. Might be tomorrow yet, but we'll check.

I know that we as Christians are supposed to accept and understand God's will, and be content and all that. Why does it seem that sometimes we're just chess pieces? I know all the "right answers" to the questions I have, but when you peel back the facade of "Christian-ese," I have to wonder why it seems God made me one way, and then allowed circumstances to enter my life that are diametrically opposed to my nature. (And I'm not talking about my sin-nature, because the things I desire are good.) For example: I am an extrovert. I LOVE people. I love being social. I CRAVE fellowship and interaction with others. However, I was blessed with several health issues that don't allow me to freely do any of these things. Half the time I don't have the strength or energy, or someone involved in the gathering is sick, so I can't go so I don't get exposed to funky germs and end up in the hospital. Then, when all of these factors line up, something else doesn't the weather! I mean, I know I sound like a whiny, spoiled child, but disappointment is a bitter pill. And yet I can't stop myself from hoping and expecting. This hasn't just happened once or twice. It's more like out of 100 times, things have worked out maybe 25 or 30. I've missed movies, parties, church outings, praise services, church, lunch with friends, family events, you name it. I'm sick of being disappointed and dispappointing others.

On the other hand, my husband, who works, manages lots of important things at work (like I used to) has business lunches and even some traveling now, meetings and goings on at all times of the day and week, would like nothing better than to never leave our property. It just doesn't make sense. I understand that if we ran our lives we'd run them off into the ditch. But sometimes I just don't get it. Why can't I just change my nature, then, to not expect, to not hope, to not believe that things will come together. Why are relationships SO important to ME, and not so much with my husband, who has all the opportunity in the world? Argh.

Saturday, December 13, 2008

Callin All Cars.....

My WORD some people don't know how to drive! What a day yesterday was. Oy vey.

We started at Doug's work Christmas lunch in Allegan. Very lovely. Jacob was such a good boy, so well behaved, and just tickling everyone's funny bone. He was showing off his animal sounds and language skills. What a kid! They had lots of cheese and fruit left over, so Doug and I got to take home three huge partially filled trays of meat, cheese and fruit. Awesome!

Then we were going to stop by Linda's folks house and pick up some more stuff that they found that they wanted me to have. On the way, we got off M-6 onto Byron Center Ave, and got up to speed. From the other side of the road, a woman came flying off the exit ramp, ran a redlight, and forced us into the lane next to us by very nearly broadsiding us. Thank GOD there wasn't anyone next to us, but Doug had to slam on the brakes not to hit this crazy woman OR the people in front of us. Thankfully, we didn't hit anything, Jacob wasn't bothered at all, and we were okay.

Our lovely fruit and cheese trays, however, were not.

They came flying off the back ledge and backseat and slammed open into the back of the front seats and all over the floor. I was NOT happy. Doug was even not happier. He followed the woman, (In a brand new white least she wasn't on the phone, I would have stroked out then...). I asked him quietly what he was planning on doing, and he said, "I just want to see where to had to go in such a hurry," And I told him she was going to the mall. I just knew it.

And where did she go? TO THE MALL. I was like, well thank the Lord she made it to the mall on time, after nearly killing us. He followed her all around but she obviously realized it and we got stuck in traffic. I told HIM I wanted her to come and look at the back seat and my child and ask her what would have happened if she HAD run into us and my baby son got hurt. But unfortunately we didn't have the opportunity.

So we finally get back on track to go to Linda's parents, and visited with them for a few minutes. It was hard. Sad. They are doing okay, considering. They don't feel much like Christmas, but they went ahead and put up the tree. I told them I was glad they did, that Linda would want them to, and that they needed to celebrate the REAL Reason for Christmas anyway! That without the baby Jesus, Linda would not right now be dancing in the presence of her God. Then we hugged and cried. : )

Finally it was on to Costco before visiting Doug's folks in Wayland on the way home.

Going through Linda's stuff at home is wonderful and horrible at the same time. Laughing through tears. Seeing projects she was working on. Seeing some of her "business" stuff from Creative Memories. A frame with a picture of her cat Misty. Her handwriting. It was a bit overwhelming, so I had to stop. My heart just isn't the same. Especially this time of year. But I have to just keep concentrating on how happy SHE is....not how sad I am.

My dear, precious Linda...I thank God you knew Him and are living and loving Him right now. I miss you more than I know how to deal with, and there will never be another you. I'm trying to learn to live life without you being a part of it, and it feels so unnatural. Every day I think of you. Watching a show we both watched, ready to grab the phone and say, DID YOU SEE THAT??? I have some of your books. I see your handwriting. I look at the albums you did for me. I see your pictures. Oh, my dear friend, I miss you.

Friday, December 12, 2008

And the form of Arthritis Is......

I met THE nicest doctor yesterday. Dr. James Taborn at Midwest Arthritis Center at Borgess. What a wonderfully endearing, knowledgable, kind, not-at-ALL-arrogant man. He carefully questioned and examined me, and spent the time he needed to find out all the information necessary to best make an informed decision...oh, that and FIVE vials of blood and a chest x-ray! : )

In his expert opinion, his first impression of my joint pain is that it is reactive arthritis. That means that I have gotten TEMPORARY arthritis from some molecule that irritated my immune system, i.e. the Azithromycin that I took. It may not be from the antibiotic, because that usually starts a week or two after the drug, not a day or two. But my body has never been very good at following the rules!

Anywho...we may never know what caused it, but the beauty of it is by the time I wean off the prednisone back to my maintenance dose, the arthritis should have resolved on its own. This is the best news possible! I will still be on the prednisone for 4 months or so...I've gained 2 pounds and I think my face is getting puffy. Doug says he doesn't think so, but I do.

He took lots of blood to test for several autoimmune connective tissue diseases, like lupus, rheumatoid arthritis, and so on, but his instinct says it's reactive. (Many autoimmune diseases, of which myasthenia is one, have a tendency to run in pairs.) He's been doing this for 30 years, so I trust his gut! I will find out Tuesday or Wednesday of next week.

The chest x-ray was to possibly confirm the reactive arthritis. If you have reactive arthritis, many times you can tell from a chest x-ray because the lymph nodes can be enlarged. I will find out next Tuesday or Wednesday when I call his office. He also wants me to get a bone density scan, since I have been on the prednisone for so long, and don't get much calcium. So I will be doing that in the near future as well.

I will keep you posted, but this was one doctor visit that had me doing the dance of joy!!! Dy-dy-dy-dy- da-da-dy dy dy dy HEY HEY HEY HEY! (For those of you who are Perfect Stranger fans!)

Thursday, December 11, 2008


So I had my first mammogram ever today. Mammo JAM I should say.

I do have to say I had it so ramped up in my head that I was expecting refrigerator-like door slamming action, and was pretty freaked out. really wasn't that bad! Honestly. It was uncomfortable, mostly because you have to hug this big piece of cold metal shoved into your armpit with one arm above your head rotated at a 112 degree angle backwards while holding your breath (which you probably don't realize, but it's all but impossible with a trach because everything just gooshes out the hole inyour neck!). And of course the germophobe in me is wondering who else's armpits have been shoved into the cold metal, and then I'm ready to puke and gag and pass out thinking of someone else's armpits touching the very thing MY armpits are jammed into at the moment. But thank the Lord I got through it and she didn't have to take anymore.

I understood the top view, but looking at this machine, when she said side view (or side slam, depending on your viewpoint) I'm thinking, what I've got to stand on my head? But the lovely machine tilted.

I'm sure everything is fine, it was just a baseline screening. Plus, I got a $10.00 gift card to Meijer because it was my first one ever. Sweet!

On another note (a sad, minor key, dissonent note) I found out I absolutely have to sign up for Medicare. Ug. My blank-ing insurance company is sick of paying my bills, so they did their homework, and found out that by law, since I receive disability, they can make me have Medicare as my primary insurance to even stay on theirs as a suppliment. SO...I will get to pay $97.00 a month for less coverage than I have now. PLUS, Doug and Jacob will go on a 2 person policy with Blue Cross, with supplimentary for me, which will cost more, and covers basically nothing for me except prescriptions. Which for me is huge because I have so many. It just makes me crazy that insurance companies have so much power. That's why we pay insurance people. So that when we need it, it's there.

OH, and if you're remotely healthy and don't have life insurance, GET IT NOW. Once you have anything wrong with you, you can't get any amount of coverage until you're over 45. Doug and I tried everything. We found one policy that I MIGHT have been approved for $20,000.00 of coverage at like $150.00 a month. Yah. I don't think so. Doug was in the best category health wise, so his was cheap. But seriously...if you don't have life insurance, I don't care how old you are, GET IT. Because once you think you may need it someday, it will be too late.

Off to the rheumatologist today; hopefully we will get some answers about the joint pain and get me off this prednisone. I'll keep you posted!

Monday, December 8, 2008


Well I have a new addiction. FACEBOOK. I haven't ever been on myspace or facebook or any of those things...I don't have a fancy cellphone that takes pictures or even texts. I'm a technological cavedweller. That's why it's amazing that I can have my own blog! I can do e-mail and type, that's about it. Well, someone sent me an invitation to facebook, and now I'm a junkie. In 24 hours. I've found friends from college that I haven't talked to in 15 years! Crazy. It's like, no matter how far away you are, you can be "right there." (Ever notice how hard it is to type with a big ol bandaid on your finger??? I keep hitting more than one key at once!) Technology is really shrinking our world!

On another front, I go to the rheumatologist on Thursday. My treatment this past Friday in Ann Arbor went fine; we were blessed to drive out of the snow on the way there, and had blue sky and sunshine in Ann Arbor. Drove back into the mess just before Kalamazoo. My neurologist wants me to wean off the prednisone RIDICULOUSLY over 4 months!!! I'm like, dude, you have no idea what this stuff does to me. He said weaning too quickly can cause pain, but it was the exact same pain I had before I ever went on a higher dose, so I can't imagine that's why. Hopefully the rheumatologist will over rule him!!

I'll keep ya posted! And if you're on facebook...look me up!!

Wednesday, December 3, 2008


Yah, so don't read this if you want some uplifting, feel good message today.

I'm sick and tired of being sick and tired. Last night I had to take the trach out and clean it. The coming out part is no big thing, the going in part SUCKS. The doc says it will "toughen up." I'm like, when, in the next millenium??? It still bleeds every time, and hurts. The last two times I changed it I coughed so much I threw up. Nice.

Last night I'm getting in bed, and I put my wrist guards on for the carpal tunnel. I have my eye patch on because the double vision is making me lose my mind. I had to do an overnight pulse ox study again, so I have this thing on my finger, and a little machine in bed with me. I have my oxygen on through the trach mask. Doug is like, I love you honey...and I just started bawling. I felt like Frankstein. I would so love to just flop in bed. Sleep on my stomach (but right now I would suffocate with the trach).

This sick and dying earth has personally rubbed off on me, and I'm so sick of it. It's just too much for one person to handle. Not to mention trying to take care of a 2 year old and raise him without living in front of the television...keeping up with housework, yeah, like that happens.

I'm just OVER it all.

And I don't want sympathy, that's not why I wrote this. I needed to vent, and if anyone has a problem with it (calling it sin) TOO BAD. Walk a mile in my mocassins before you judge me. I just want to be fixed.

Tuesday, December 2, 2008

Here an "ologist" there an "ologist", everywhere an "ologist!"


I finally get down to 10 mgs of prednisone, and 2 days later I wake up with a sore knee. That was Thursday. I figure, eh, I've just been running around too much. Friday I wake up with painful toes, knees and hands. I'm thinking you've got to be kidding me. Saturday I wake up with painful everything. I bump my prednisone back up to 30 mgs (which tells you how much pain I was in because prednisone is the devil.) Sunday it's even worse. Monday I put calls in to the docs.

So I talk to the dermatologist clinic at the U of M, and they say this joint pain isn't related to what I had before. (Granulomatous drug eruption.) Since this is the only symptom that came back when I got down to 10mgs of the Prednisone, it's probably a totally separate problem. JUST what I wanted to hear.

I still have a call in to my neurologist to see what he thinks. The dermatologists suggest I go see a rheumatologist. So, I have an appointment on the 11th. They want my records from the U of M before I go. Ba ha ha ha ha. Getting records from the U of M is like getting milk from a lemon, so we'll just have to see about that. I usually just write out all the stuff that's been going on with a brief history of "me" to send a new doctor beforehand so they have some clue. The good ones actually read it. The dolts make me repeat everything when I get there.

All I want is for this to go away, and NOT require prednisone to do it. For those of you unfamiliar with this evil drug, it's INSANELY awful, and yet sometimes it's the only thing that will work. When I was in the hospital it literally helped to save my life. So you have to love it. But then it also helped my hair to fall out, and helped me gain 65 pounds in 6 months, right before my big church wedding. (Which was actually a day before my first anniversary, but that's a totally different story.) It makes you starving hungry, moody, and gives you a big ol moon face.

It's getting ot the point where I almost have to just sit and laugh. I can't imagine what could be next. It's like a comedy of errors. It's almost too bizarre to be true. If there's some wierd reaction or disease or syndrome that half the world has never heard of, chances are, I have!

Anyway. I'll keep you posted. If my fingers keep moving.

Saturday, November 29, 2008

The Audacity

I am fuming. I watched the news this morning and saw a story about a Wal-Mart employee in New York being trampled to death as he was opening the doors on "Black Friday." I wanted to puke. A mob of greedy, selfish people literally stomped a man to death so they could be first to the best sales. What a tragic commentary on the state of our country. The good ol' USA, where you, too, can get the job of your dreams at Wal-Mart and be crushed to death by a bunch of "civilized" savages. UN-believable. All to "get a deal." I wonder what kind of bargain this man's family feels like THEY received. All to be first. It is so sad.

Another time I felt this way was when my son was born, and was in the NICU on a ventilator, fighting for every tiny breath, and my current pastor came up (about 1 1/2 weeks after Jacob was born) and told us about how the church was in a huge uproar and dividing over a softball game. Yes, a softball game. Now I would like to think I'm an open-minded, compassionate individual. But when I looked down at my son, lying on a pillow in my arms, with a tube down his throat so a machine could breathe for him....I almost lost it. I was filled with rage. It took all that I had not to scream and yell at the audacity of people to be so self-seeking and egocentric about a freaking BALL GAME, when MY SON was alive because of a machine. I was disgusted.

I am far from perfect, I will be the first to admit. I'm sure lots of people could name several character flaws in me. But these behaviors I just talked about take on a whole new level of self-centeredness. I cannot even fathom how this society's priorities got SO messed up. I mean, there's messed up, and then there's M-E-S-S-E-D up.

This world is crumbling and breaking and spinning out of control. The physical earth is damaged, and the people running it into the proverbial ground are greedy, self-regarding imbeciles. I'm just in awe at the lack of respect for human life on every level.

People using people, things, power, whatever they can to one-up the next guy. Seeking self-fulfillment, self-gratification, self-reliance. Self, self, self. God must look down and just weep at His once perfect planet and people. May He forgive us all.

Tuesday, November 25, 2008

Udderly great!

I know, I know....Punny.

Seriously...I called my trach doc and asked what the heck to put around my trach because it's so raw and sore from all my coughing and suction. They said "Bag Balm. You know, the stuff you put on cow udders."

Um, excuse me? Did you say COW UDDERS? And you want me to put this on my neck??? Now I'm a city kid, transplanted to the country. Apparently this stuff has been around longer than dirt, and EVERYONE knows it's fantastic for sores, burns, scrapes, whatever. Mooooove over antibiotic cream. Hardy har har. I kill me.

Anywho. My neck is still pretty's not as bad as yesterday; it's not as pins-and-needles-stabbing pain and more like bumped-and-bruised-and-swollen pain. Which really is better. I think I'm going to take it out and clean it again....Maybe I can reposition it a little bit so it's less sore. It's gonna hurt like a bugger going back in though. No fun!

Doug's out hunting again, surprise, surprise. I heard a shot a few minutes ago...don't know if it was him or not.

Well....that's it for now. Wish me luck with the cow cream.

Monday, November 24, 2008

Spending Fast

Doug and I read this article a couple of months ago in the Reader's Digest that really piqued our interest...A family decided to go an entire month without spending any money, except for things like bread, milk, and fresh vegetables. Also gas, but they budgeted "X" amount of dollars, and tried to ride their bikes as much as possible. I think they had like $100.00 for the month for these "necessities."

They ate what was in the house, in the pantry, freezer, etc. They didn't go to any movies, visit Starbucks, rent movies, go grocery shopping, stop and buy a pack of gum or a magazine, nothing.

Doug and I have decided to take this challenge in January. I keep saying that we have a budget, every penny is accounted for, yet we always spend more. SOMETHING always comes up... vet bill, new tires, whatever. And we're trying to pay cash for everything, but that's tough! We are working toward being debt free (other than our mortgage) in 4 1/2 years.

Anyway, the couple who did this spending fast ended up saving almost $2000.00!! Now I know we'll never save that much, because we don't do things like spend $3.00 on coffee every day, go out for dinner very much, go to movies and stuff. But we are going to tighten the belt, and eat what we have in the house, and not buy ANYTHING. I'm excited to see how much we can save, and hopefully find ways that we are able to save more money each month.

Something to think about! We aren't doing it in December because of the holidays. And starting a New Year with a new plan seems appropriate.

I will keep you posted on our progress!

Sunday, November 23, 2008

Thanksgiving Every Day

Good morning....

I get this e-mail called Moments with You from the Raineys...sometimes they're fantastic, sometimes okay...This one really spoke to me, as I have been going through some difficulties as of late. It seems as if it's not one thing it's another. I am going to read this EVERY day... and hopefully get out WAY before 40 years!!! (And before you say you have absolutely NOTHING to be thankful for, you ARE reading this, so you can see. If someone's reading it to you, you can hear.) We ALL have something.

Thanksgiving Day after Day
by Barbara Rainey

He who offers a sacrifice of thanksgiving honors Me. Psalm 50:23

Has it ever seemed surprising to you that God made the Israelites wander in the wilderness for 40 years just for grumbling and complaining? My kids may have spent 30 minutes in their rooms for griping, but 40 years? That's some severe discipline!

One thing is crystal clear from this biblical account: God is obviously not pleased with grumbling, ungrateful hearts. And we should not tolerate grumbling either--in ourselves or in our children.
Being grateful is a choice that we readily and ritually express on Thanksgiving Day. But what do we do on other days of the year when the mood is less festive or the atmosphere is more ordinary?

I like the contented way the Pilgrims approached life. They did not allow their feelings or circumstances to determine whether or not they would exercise gratitude and thanksgiving. They believed that God was in control--"providence," they called it. Following this belief to its logical conclusion, they responded to challenges with a perspective that said, "God has allowed this for our good." They chose to believe--rightly so--that their dependence on a holy, faithful God was well placed and that even though much was against them, there was always much more for which to be grateful.

Developing a heart of gratitude is essential to growing a stronger faith. As John Piper stated in his book A Godward Life, "If we do not believe that we are deeply dependent on God for all we have or hope to have, the very spring of gratitude and faith runs dry."

Make the choice today to take your eyes off yourself and your circumstances, gratefully acknowledging who God is and what He is doing. Deny yourself the right to complain, embracing instead the deep-seated joy of thanksgiving . . . in all things.

A grateful heart pleases God.

I would hope and pray that we can all take this attitude forward. (And I am DEFINITELY preaching to the choir here...) It doesn't mean that we're not going to have cruddy days. It CERTAINLY doesn't mean everything's going to come up roses. But we live in a broken, dying world. Most things around us are broken or dying. That's just a fact. So let's try not to add to that, but somehow CHOOSE to be thankful. Even if you can tell God you are thankful for ONE thing a day. If will at least focus attention where it needs to be for a moment....and then possibly another, and another....

Today, I am thankful for technology. I am thankful that I have this computer to "keep in touch" when I'm not able to get out much. I am thankful that I can receive devotionals and encouraging news from friends. I'm thankful I can use this to learn more about God.

How about you??? What are YOU thankful for today, right now?

Thursday, November 20, 2008

Things That Surprise You When You Clean

Well, I am thankful that I get in these "moods" sometimes, because almost all my sentimental bones (and there are quite a few) seem to go dormant, and I'm like, why in the world have I been hanging on to THIS for ten years???? You know the rule "If you haven't seen it/used it/worn it in a year, get rid of it?" More like 5 years here.

Found Jacob's other green sippy cup. In the office. Buried under dust bunnies, some ammo in a camoflouge bag, some Creative Memories stuff, and a box. The office has become the catchall. It was supposed to be "my" room, for Creative Memories, computer, etc. But since Doug's biggest gun cabinet is in here, we have the inevitable gun paraphenalia. I hope that last statement doesn't like, flag the FBI or anything. It's ALL LEGAL.

I got a bunch of Creative Memories stuff that had been Linda's, and I was going through that too. One box was pretty harmless, had lots of cool bags, t-shirts, stuff like that. The other one had a bunch of product in it with prices on that she had written, a couple of albums that she had pre-made (so you can just add pictures and journal)...the stuff with her handwriting on it was tough.

It's just second nature to think "Linda." Linda would love this! Oh my gosh I can't wait to tell Linda..... I wonder what Linda thought of that Rachael Ray episode? TV shows that come on that she used to love. Books I have that I never got back to her. Stuff I find while I'm cleaning...a note from her, a card, a gift. Now Thanksgiving is coming, then her birthday, then Christmas, all within one month. The first Thanksgiving without her....the first birthday without her....All the firsts. Please remember her family in your prayers through this time also.

So many memories....everywhere I look. It's good and bad, ya know? I mean, I don't want to EVER forget the feelings and wonderful memories that such things evoke, yet it's still soon enough that what little has mended in my heart seems to be torn open again. I love you Linda. And oh, how I miss you.

Wednesday, November 19, 2008

Seeing Double

The ONLY good kind of Double Vision is the song by Foreigner.

This is making me CRAZY! This will be short because the strain on my eyes in insane. I seem to be feeling better, but the eyes are just NOT cooperating. ARGH. SO frustrating. And it's SO draining and exhausting. The headache, the muscle strain from keeping one eye shut...the depth perception issues...

Okay, I'll quit complaining now. Please pray this goes away POST HASTE!!!

Monday, November 17, 2008

Hunting Widow Bakes Herself to Death

Doug was out til almost 7:30 tracking a buck last night. He knew he hit it, found the blood trail, but it was so dark he couldn't find it. His little caveman headlamp thingy burned out, so he was stumbling around in the dark before coming in to get his spotlight and the tractor.

But he finally found it. I could tell because of the way he greeted the dogs:

First time he came in after looking and not finding the deer: "Moose! Get in here! Stay! Stop it! Back up! Get off me!"

After another hour of searching and finding the buck: "Hi guys! Are you my good puppies? Are you my good little doggies? {pet pet}"

SUCH a man.

I've been baking Christmas cookies. Lots and lots of Christmas cookies. Jacob likes to help dump stuff in the bowl, and the dogs love it! (We miss sometimes). It's been a long couple of days, I'll tell you that much! So now he has 2 deer, pretty good size ones, and the butchering will soon begin. Thank God it's cold. I always freak out when it's about like 45 cuz I'm thinking germs!! Oh, and of course last night we had to bundle up and go outside to take pictures of the dead animal. I have no problem with hunting, as it provides most of our meat, and saves lots of deer from getting creamed by cars or starving. Jacob thought it was pretty cool. I was like, here we go....

So hunting season lasts like 2 weeks or something, then muzzle loading.... so he'll get more deer. He always gets one for his parents...if we get extra we'll pass it around! Doug says it's going to be a hard winter because the deer had thicker layers of fat on them than he's ever seen down here. I'm like, LOVELY.

Also been making stuff with Jacob. We made a big shaker the other day (plastic cups decorated with tissue paper and stuck together with beans inside). Yesterday we made snowflakes and stained glass (you iron crayon shavings in between 2 pieces of wax paper). I'm NOT the artsy type, so all this is a stretch for me, but Jacob really likes it, so....

It's going to be a loooooong winter!!!

Saturday, November 15, 2008


Hubby finally came in from the dark and cold with Deer #1.
And so it begins....


Well, Hallelujah.

Everything went great with my treatment, the needles barely hurt at all, we got there early and got out early, treatment ran smooth, and my neuro stopped up to see me. Everyone was like, Oh you look SO much better. I was like, yah, I'm not turning into a giraffe anymore. (Although a little extra height wouldn't have been bad...I could do without the spots).

So the neuro said I could cut down my prednisone time level and get off it in 4 weeks instead of 8. THAT, my friends, is wonderful news. Predisone is like a cure and poison all in one.

Hopefully now my eyes will get back to "normal" and we can get on with this thing called living. I was asking my neuro about why the eyes are so difficult to maintain control of in MG, and he basically said because they have to work PERFECTLY in order to see right. If your neck or shoulders are weak, or off by 10%, no probably wouldn't even notice. But if your EYES are off even 2%, you'll see double. I was like, well, I guess that makes sense. The way the muscles work in the eyes are unlike any other set of muscles in the body as well.

Made me just think again at how much we take for granted. Before I got sick, I took advantage of every breath I took. I just assumed there'd be another following it. I never in a million years though how grateful I was that my arms didn't get weak when I folded laundry. Or that I didn't choke when I swallowed, or that I could work full time. While I appreciated my eyesight, I never really thought about the complexity in which God created it to work.

Made me also think of having a healthy baby. There are so many MILLIONS of things that have to go EXACTLY right to have a healthy, "normal" baby, and yet this happens thousands of times a day around the world.

For many of us, I fear, myself included, we assume so much. Until something "bad" happens, until the health isn't there, or the job, or the friend, or the sister, or the parent...until we lose something, we often don't appreciate it nearly enough.

Well, for the record, I am SO thankful for my eyes. I am SO thankful that I can see and hear, and walk. I'm so thankful that I have friends who love me. That I have an amazing husband and perfect little boy who both enjoy terrific health. I am thankful for medical technology that has saved my life over the last 8 years. I am thankful for skilled surgeons and people who invented more comfortable trachs so I can breathe better, and not have to be stuck in bed on a ventilator.

Most of all I am thankful that I have a God who tolerates my lackadaisical attitude and loves me wherever I am. Who won't give up on me no matter how ridiculously childish I become, no matter how spoiled I act, no matter how much at times I may grieve Him. I am thankful that He is faithful when I cannot be, because He cannot be untrue to Who He Is.

So today, just for a moment, think of something you might not normally take the time to be thankful for. Something you take for granted. And Bless God that you have it.

Thursday, November 13, 2008

Oh to be NORMAL

So I get a call from the dermatology clinic at the U of M this afternoon saying that my tests came back "not consistant with Sweet's disease." They have a few more stains to look at to double check, but wanted to at least call to see how I'm doing.

I'M CONFUSED to say the least.

Right away I'm thinking, so the huge chunk they took out of my OTHER arm was basically for naught.

I'm also thinking so what the heck is/was it??

They say it was probably something called "granulomatous drug eruption," a rare reaction to the anti-biotic I was taking for the sinus infection I don't know if I really had as a result of the flu shot I will NEVER get again.

I can't find anything in English about this granuloma crap, so I'm not even sure what questions to ask. The doc just said don't ever take that drug again, or any in the same family. Lovely.

Just for ONCE I would like a doctor to say, "Oh my gosh, I know EXACTLY what this is, it's NO BIG DEAL and we have the PERFECT way to treat it that won't cause any pain, and doesn't cost a fortune.

Pardon me while I scoop myself up off the floor of utopia.

Stand Back

Well, as much as I hate Prednisone, it IS a miracle drug. Kind of the love-hate thing again. It works in so many situations where NOTHING else will, yet the side effects are horrifying.

After only ONE dose of Prednisone, my joints felt better the following morning. After two more doses, the pain was completely gone. The spots are almost gone, and my biopsies are healing nicely. They look pretty horrible right now, but I can tell they're healing correctly. I might have a little ripple in the research arm. I should have asked to see the size of the sample before I agreed!!! Nah, I would have done it anyway. If someone else can be helped by all the garbage I have been through, all the better!

On another health note, I got a letter the other day saying that because I am on disability, I have to start using Medicare as my primary insurance. AND PAY $97.00 a month for it!!! I was like WHAT?!?!?!?! Are you KIDDING me?!?!? I have fantastic insurance through Doug's work, and it only costs a little more than $97.00 for our whole family! I am NOT happy. I have to call the SS office and make an appointment to find out exactly what's up. Then, Doug has to change his insurance to 2 people (him and Jacob) with supplimentary for me, which will cost MORE that our plan right now, and half of my stuff won't be covered. Supposedly there is no prescription coverage. I spend $2500.00 a year in COPAYS...My CellCept is like $600.00 a month....I'm trying not to freak, because I know something will work out...but this is my worst nightmare. As far as supplimentary insurance, who the heck is going to take me with all my pre-existing conditions??? ARG. Not to mention they're going to cover that every 3 weeks??

At first I thought this was Blue Cross doing this, to scare us or something, but it's actually a federal mandate. FEDERAL. As in GOVERNMENT. Even though people just elected a Socialist president, I thought we still live in a capitalist, free-to-choose-at-least-our-health-insurance country. You know, the whole Land of the Free thing??

I'm just furious. As soon as I have all the details from SS, I will be writing every government office from City to County to State to Congress...I'll probably e-mail the dang president. The one we still have anyway.

Well, I better stop so I can put the fire out that's coming out my ears.
Oh, one more quick bit of advice...If you're healthy now, get life insurance. As soon as you get REMOTELY ill, you won't be able to get it from ANYONE at any cost.

Sunday, November 9, 2008

The newest Cheetah girl?


So I go to Ann Arbor for plasmapheresis, but they take one look at my spots and say, OH no. They said they weren't going to start the treatment until my neuro came up. I asked them to page him and tell him that, because sometimes he comes up half way through the treatment.

I think some of the nurses thought I had MRSA. Nope. I could hear a couple of them whispering. I was like, oh for crap's sake it's not MRSA. Dr. Teener said he would try to get me into the dermatology clinic right away, but if he couldn't, I should go to the ER.

Now let me tell you something about U of M's ER. Last time I was there, I couldn't swallow, couldn't breathe well, my face was paralyzed, I had NO muscle tone and was in a wheelchair. We got there at noon, and I got into a room at 2 in the morning. I can't IMAGINE how long I would have been there with a skin condition!

Thank the Good Lord that I got into the derm clininc right away. After about 10 minutes, the doc went out to confer with her attending (it's always like this at the U of M. They send the newbie in first for practice or whatever, then the big guns come in and you get to tell your story all over again. AND get charged twice. Gotta love America.) And because it's not something they see every day, every intern, med student and other "helpers" came in to my room 2 or 3 at a time....once I think there were 5 in there. They all timidly knocked on the door and asked if they could come in and look at me. I thought about charging admission, but declined, for the greater good of mankind. Sure.

So they rather quickly concurred that I had something called Sweet's disease. See for some great information. The only way to confirm for sure is to do a biopsy. I'm thinking, tiny piece of skin, no biggie. Well, it was a shot of lidocane to numb it, and then a CHUNK came out that required stitches. Oooookaaaayyy. Then they asked if I would be willing to participate in a research study they were doing on Sweet's to try to determine the exact nature of the disease, why some people get it, why some don't.

So I say, sure, why not, if it can help someone else. What's another hunk of skin? I've got plenty to go around! So this other doc comes in and take a much bigger hunk of skin, about the size of a number 2 pencil eraser (never used.) Not so pleasant that one...he's like, oh look, isn't that cool! It's just like a hole in your I made the mistake of glancing down and seeing a hole in my arm filling with blood....Good thing I was sitting down.

So anywho...all said and done, I got 30 bucks for the second biopsy, which I didn't know I would get, and Jacob got a cool stick horse! I have to take Prednisone which is a miracle drug, but it's HORRIBLE on your system. Within 2 doses my joints felt better. But it makes my blood sugar go through the roof, and makes you moody, hungry, and gain weight. That's ALL I need.

So here's to me...spots and all...what could be next??

Wednesday, November 5, 2008

Fox in the Henhouse?

Well, it's over. The election I mean. I still held out hope until Obama won Pennsylvania and Ohio. Then I knew it was all over but the cryin'.

I PRAY that Christians use this opportunity to pray like never before for our House, Senate, President and country.

PRAY that this country will repent of her wickedness, turn from her evil ways, and allow God to heal our land.

PRAY that Obama will not be deceived. Pray that the American people will not be deceived!

PRAY that God will move in Obama's heart to change his opinions on things like abortion and homosexual marriage.

PRAY for our troops, as this new presidency may impact them immediately and severely.

PRAY that this country will unite...One nation UNDER GOD, indivisible. INDIVISIBLE. Unable to be divided. The die has been cast, folks. Now we have to run with it. Being ugly and bitter (okay maybe for a minute) won't do any good, because you can't change a thing.

And let's not forget the most important thing of all: God is STILL God. He is STILL on the throne. He is STILL in control. He answers to NO man. It is HIS purposes and plans that will prevail. Do not let fear strike your hearts, but KNOW that God is bigger than the office of the president of the United States.

Monday, November 3, 2008

Spots and Polka Dots

Ug. So I finally got rid of this headache I've had since October 15. How do I know it was since October 15? Because that is when I got the flu shot my doctor kept harping at me to get. For four days after that, I had the worst headache and chest pain I've ever had. The next day all is well, until the afternoon when I get the headache back. And so it went every day until this past Wednesday. Then it was so bad I had to go to the doctor. Sinus infection. Second worst headache I've ever had in my life. Doc gave me pain pills and a stong antibiotic. Friday I was in bed all day...Doug had to come home from work at 8 in the morning. I am NEVER in bed all day.

So Saturday my headache is coming and going a little, I finally have some energy to clean up, and I notice little splotches in a circle around my elbows of all things, and down one arm. It's not hives, because it's not very itchy. It does feel almost like a bruise when you touch it. Lovely.

So today, Monday, I went back in to the doctor to find out what was up. I'm thinking shingles, lupus (too much internet...I DID have all the symptoms for lupus except the butterfly rash...just goes to show you can't jump to conclusions!!) So he looks at me and says, "This isn't a typical reaction to antibiotics." I say, "I'm not your typical girl!" So he checks me all out and concludes that this is a serum reaction (serum in something in your blood) similar to vasculitis. I'm like, um HUH? And I'm pretty fluent in medical-ese since I am a professional medical patient!

Then he said it was an immunological response to the antibiotic. That I got. If I didn't have MG, I probably wouldn't have had the reaction. So because the antibiotic will be in my system for at least another 4 days, it might get worse before it gets better; or at least "linger." Nice.

Anywho...on another note....two "firsts" for Jacob tonight, within about 2 minutes of each other. After his bath we were getting our jammies on, and Doug sneezed in the bathroom. Jacob yells, "Bless you Daddy!" Never said that was precious.

Then as he was launching himself off the changing table at me to give me a "big hug" he ripped my trach out. Not so precious.

I knew it would happen eventually. I had just taken it out and cleaned it, and thankfully I caught it so I didn't have to clean it all over again. Just popped it back in....well, mostly : )

Oh the joys of life!!

P.S. I will NEVER get another flu shot as long as I live!!

Thursday, October 30, 2008

You Know You're A Mom When....

I noticed myself doing some rather silly things the last few weeks, and thought, I have done SO many things I SWORE I would never do that MY mom did...(even though I had a great mom... she was so OLD, ya know : } So I thought I'd share of few of my "You Know You're A Mom When...." Feel free to chime in with your own! make your "to-d0" list with a crayon. wipe the snot from your baby's nose WITHOUT a kleenex. (Same goes for grabbing that booger a la natural on the hands.) know what time and channel every episode of Diego, Dora, Little Einsteins and Backyardigans are on.

....your son has more stuff recorded on your DVR than you do. stop hoping that your husband will jump up and say, "here, honey, let ME change that poopy diaper!" learn it IS possible to go a week without a complete shower and you won't die. realize there is a lot longer way to go to the edge of sanity than you thought! lick your thumb to wipe the schmutz off darling's face (even, horror of horrors, in public!) lick the palm of your hand or fingers to smooth his hair. totally understand now when you see your own mother sitting in a dark quiet room doing nothing.

And best of all, you realize that there is nothing this child could do to make you stop loving him, that he is the greatest gift God has ever in His mercy decided to bestow on you. You realize when you look into his eyes you are looking at all the best things of you and your husband combined. And you would do anything for him. You want to protect him from the world, yet know you have to prepare him for it. The thought of him hurting breaks your heart, and brings out THE Momma Bear. (Just ask our former rooster).

You realize that this is the hardest job you'll ever have, but by far the most important. You are raising the future, and literally molding a mind, and teaching a child to live for and love the Lord.

To my precious miracle baby: Mommy loves you Jacob!!

Wednesday, October 29, 2008

Don't Need Four Walls

Wow. As I reflect on the last month or so, it's amazing to me how God has shown me that I do NOT need to depend on His church to meet my needs, but rather on HIM. A wonderful friend e-mailed me about 6 weeks ago, and said that there was a wonderful lady in her Bible study that asked if she knew anyone who needed help one morning a week. This friend said the Lord brought me to mind. So, she and this lady, Dina, came out to the house.

Dina is awesome. Oh my word. Jacob loved her the second he laid eyes on her. She played and played with him, giving me a wonderful opportunity to just talk and fellowship with my other friend. She asked if I needed cleaning done, or whatever...she would do anything I needed.

She started coming the Tuesday after my dear Linda died. She brought me a card and gift. THIS WOMAN DIDN'T EVEN KNOW ME....and yet God placed me on her heart, and she was willing to follow His guidance. Every week, not only did she play her heart out with Jacob (I was exhausted just watching them!) she brought something every week....dinner one week, dessert the next, soup the next. And we got to just talk and get to know one another. What a precious, precious woman.

I was so blown away by her graciousness, and how God helped me like that after my last church debacle. It's like God was just saying, you don't need a building, you just need me. Lately, many of my friends have just been coming out of the wordwork to love me and support me, to visit me, to just chat with me....and to all of you I say a hearty thank you.

Words aren't worth much if they are never backed up. You ARE the hands and feet of Jesus. You have shown by your actions, not just mouths, that you love and care for those who aren't perfect.

You have walked out what so many churches have failed to do: Feed the hungry. Clothe the naked. Visit the sick and imprisoned. And I pray that the bounty of God would fall out of the heavens and bless your socks off!

Love to you all, my dear friends, for showing me the love of God.

Monday, October 27, 2008


One of the worst things EVER is disappointment. Even when I was younger, nothing was more bitter to me than being let down. Whether it be a person, cancellation of an event, weather problems, illness, whatever it was didn't really matter. What drove me crazy was just the fact that my plans weren't going to happen the way I wanted them to. (I can hear God chuckling!!)

So when I was diagnosed with MG, I learned a whole new level of disappointment. I was forever missing events, cancelling plans, just not physically able to attend or participate. With the MG, I used to rest a few days, even a week before something was happening that I really wanted to go to. I figured if I saved my strength, I would for sure be able to go. I found out that this was not necessarily true.

This happened with Linda ALL the time. I would plan on going over to her house, or out for lunch or something, and I would try to just rest ahead of time, not stress out, just relax, even if I felt good, and strong, and like I wanted to do something. And then the day would come and I would STILL feel like poo. Of course Linda being Linda was SO understanding, and I would usually be way more upset than she was.

So now, when I feel good, I go for it. I do something. I don't wait for a planned event. I put the event on my calendar to reserve the date, I may look forward to it, but I don't COUNT on it like I used to. And if I feel good the day before, I still do something, because I don't know what tomorrow holds. Case in point, I really wanted to start going to Bible study last night. Well, Friday I felt fantastic, so we went on a road trip (see below). Saturday, amazingly, I still felt good, so we did our grocery shopping. Sunday morning, I was tired, but felt okay. As the day progressed, I went downhill rather quickly. So I missed Bible study.

You know, though, we really ALL need to live for today. NONE of us are promised tomorrow. Don't wait til tomorrow to call that friend. Don't be afraid to say I love you. Don't wait til tomorrow to make SURE your kids know you think they are amazing. Don't wait to tell your husband that he is your hero. Don't wait to send that card, or make that visit. You may never have the opportunity again. You can never get back THIS moment. Don't waste it.

Carpe diem.

Sunday, October 26, 2008

Road Trip!!

Friday was Jacob's first real road trip! We left Friday morning and went to Michigan City to the outlet mall to shop a little. It was awesome because we got there like 15 minutes after they opened, and it was like a ghost town. Jacob loved it because he was able to run around outside like a crazy man. He would run up ahead of us on the sidewalk a little ways, then we'd say "Stop!" and he would immediately stop and wait until we were about 3 feet away, and we'd say "Go!" He was having a blast.

The only thing I HATE about going anywhere with a little one in diapers in changing them. Jacob hates those baby changing thingy's...I think he feels unsafe. I hate them because I have to hose them down with antibacterical wipes before either of us touches it. I can't even really THINK about the germs on those things or I'd probably just go catatonic.

Anyway, from there we went to Cabela's!!! I was so excited to think of Jacob's face when he saw all the animals there...especially the elephant!
He has a blast. He kept saying "Deer! Another deer! ANOTHER deer!" He just couldn't believe all the animals. If you've never been to Cabela's, and aren't anti-hunting, you MUST go. You don't have to spend a dime, you can walk around and see all the animals, and they also have an aquarium. They have a cafe that serves elk, bison, even ostrich, but you can always get a good ol ham sandwhich or something too!

On the way home we stopped back to Michigan City to a party supply store that we were told about that sold costumes. We had gotten Jacob an elephant costume at Costco, size 2-4T. Um, yah. WAY too short. So we needed another costume pronto, and couldn't find anything. So we get to this store, and they have literally hundreds of costumes. They had picture of them with numbers on them, kind of like in a T-shirt shop where you can make your own shirt. They had 2 or 3 people helping people pick the costumes and stuff.

We basically found 2 that would work, a tiger or a dalmatian. Jacob wanted the "pup dog." So we got the dalmation costume for FIVE BUCKS. It was 75% off! Sweet!! So Jacob is thrilled, we're thrilled, and we're going home.
Of course Saturday we tried the costume on, and he just screamed and kicked and threw a fit.
So he's going to be a cowboy.

Thursday, October 23, 2008

Sleep Deprivation

I've stated in an earlier post how I admire John McCain for his fortitude while being tortured daily in Vietnam. Approximately 2000 days in a row he was beaten, battered, and bruised. But he did not break.

I tell ya what. All I would need is to not sleep for a couple of nights, and I'd tell them anything if they helped me sleep!! (Although any tool or torture would assuredly get my gums flapping...I don't know HOW he did it.) I am NOT good on little sleep. Lately I have been waking up between 3 and 4 AM and not being able to go back to sleep. I lay there, too warm for comfort, tossing and turning, trying to get comfortable.

I sleep with oxygen and a compressor for moist air for my trach, and not only are they loud, they emit an IMMENSE amount of heat. So even in the winter, I sweat. I HATE sweat. Especially when I sleep. Then Doug crowds me or puts his 500 degree arm around me and I'm ready to jump! He's like a branding iron, I swear. His body temperature has GOT to be over 98. He radiates heat. You could probably roast a marshmallow over him.

Anyway, sleep deprivation is not great for the MG, or dealing with an extremely energetic 2 year old. Lord willing and the creek don't rise, we'll live to see another day!!

Sunday, October 19, 2008

MG, the Snowflake Disease

Hey everyone.

They call MG the snowflake disease, because while snowflakes all have many things in common, each one is distinctively unique. (They should call in the pain-in-the-rump-one-minute-you're-fine-the-next-you're-on-the-floor-because -your-legs-gave-out disease, but I guess that would take too long.)

Anywho. There are many, many things that myasthenics CAN'T take: like magnesium. Almost across the board, it makes all the MG symptoms worse. There are also many, many things that SOME myasthenics have no problem with, while others may go into crisis. For example, most people with MG cannot take the antibiotic Cipro. I, on the other hand, can take it with no problem. MOST myasthenics love Levaquin, a fairly new antibiotic. I took it for three days and almost ended up in the hospital. Doug had to half carry me down the hall, and push me up into my hospital bed (this was when the hospital bed was next to our bed in the bedroom. We could then fall asleep holding hands, even though we couldn't sleep in the same bed yet. : )

One of these questionable things is the flu shot. My very first GOOD neurologist (yes, I must distiguish because I had several that were HORRIBLE before him, but that's another post) told me to never get a flu shot. I should have left well enough alone. EVERYONE kept asking me about the darn flu shot so I thought I'd ask my current neurologist. He is fantastic, knowledgable, and the head of the neuromuscular clinic at the University of Michigan. Although I am partial to my first good neurologist, Dr. Moretti, Dr. Teener comes in a very close second. So I ask, and he says the benefits are sure to outweigh the consequences....I would do it if I were you.

Let's just say he's slipped a little on my "Favorite Doc" list.

I have spent the last 4 days feeling like I was in a vise grip. My whole body. Not just pain, but pressure. The joints in my pinkie toe hurt. I didn't even know I HAD joints in the crooked little booger. If I took a deep breath, I felt like an elephant was sitting on my chest and my lungs were full of razor blades. I had a slight fever. I had a headache that was ALMOST a migraine. I was SO weak. Scary weak. The only thing I really wanted to eat was popsicles. (God bless my husband for taking Jacob to the store, on his own, while I slept.) I took 2 naps a day. For those of you know know me well, I can't sleep during the day. I have to pee every 10 seconds. I didn't get all snotty and sneezy, but I was achy and coughy, and of course, razor-bladey. (Dopey and Grumpy probably applied too!)

It's now Sunday, 5PM, and I only had to take one nap today! Wait...what is that? I hear soft strains of the Hallelujah chorus!! Most of my aches are gone, now I just have to not over-do it.

Anywho. Next time someone asks me if I want a flu shot, I hope they are wearing protective gear.

Friday, October 17, 2008

Joe the Plumber and other news

Okay. I have to say this poor man inadvertently became the forefront of the most historical election in history. On one hand, it was hysterical, on the other, annoying. I think Joe said it best..."Get back to the issues!" The poor man's street was littered with news vans and trailers... A superstar overnight because of one handshake...and he's not even voting for Obama! (Good man, that Joe).

I have to say McCain kicked his butt in the debate on Wednesday. It was fantastic. I also have to say that Obama's association with Bill Ayers is downright frightening! In my opinion, he totally failed to explain the relationship. Then you add the TWENTY YEAR relationship with the crazy Chicago pastor, the mob dude...and we want this guy running the most powerful country in the world??? With a whole 143 days of experience?? No thanks!! Seems that he has a bit of a judgement issue. McCain isn't perfect, for sure, but at least we don't have to worry about his association with terrorists, foreign or domestic!

My biggest admiration of McCain comes from the fact that for FIVE AND A HALF YEARS, he was TORTURED. Daily. Almost every bone in his body was broken. Yet he endured, and didn't say ONE word to the enemy. He didn't leave when he COULD have because he wouldn't leave his men behind. As he was being dragged, beaten and bloodied, back to his cell, he would wink and smile at Bob, the guy next to him. Now THAT'S love of country. THAT'S honor. The man can't turn his neck all the way. He can't lift his arms more than halfway up. He can't type, or use a regular pen. He's probably in pain to this day. And all because he fought for his country. He IS a hero.

Another thing that speaks volumes to me is that during the time when Congress was trying to put something together to help this country bail out of it's financial nightmare, he was willing to abandon his campaign for the good of the people. Obama wouldn't even postpone the debate in the face of immediate crisis. Like I said, McCain's certainly not perfect (I'm a wee bit concerned about the whole health care thing...) but we know where his priorities lie.

On the home front: I feel like crap. Have you ever felt like an elephant parked on your head, neck and chest, only to get up after a while and use his trunk to razor blade your lungs? No? Well, I can tell you it's not a lot of fun. If I don't breathe too deep, touch the trach, move my neck, cough, laugh, or talk too loud, I'm just fine. : \

I did get a flu shot for the first time this past Wednesday, but I don't think it's a reaction to that, because I don't have a fever...I had a few sniffles on Wednesday but I thought it was allergies.

I got some beautiful flowers yesterday from our good friends Kim and was two weeks yesterday that my dear Linda died. It's still such a shock, as crazy as that sounds. It's like, I can't REALLY believe I'll never see her again! (This side of heaven, that it is.) At least 3 or 4 times a day, I'm like, Oh, I have to call Linda and tell her...or Oh, Linda would LOVE that...or, Oh my GOSH I can't believe such and such happened on this show we used to watch together. It's like you lose a hand... You can acknowledge the loss, but then you still have to learn how to live without that part of you. And that takes time. Some folks think that because she was fighting cancer for 11 months I should have been more prepared. But the human spirit is an ineffaceable thing: Hope lingers. The fight just doesn't go out of you until the bitter end.

I do know that she is perfect now, in heaven, dancing and singing and just loving being face to face with her Creator. I envy her that. But I mourn for myself. I mourn for her family. This planet is just a little less beautiful because her spirit has left it.

Tuesday, October 14, 2008


OH, it's such a love-hate relationship!!!

Normally doctors file with insurance on your behalf. However, there are times when you're on your own. When you deal with many doctors and hospitals and insurance stuff, you get to be a pro. When anyone asks what I do, (aside from being a SAHM) I tell them I am a professional medical patient.

You know those ads for medical transcription and bill coding? I could do it in my sleep. I can read doctor's handwriting. I know the right code for billing. And God help you if you have the wrong code. I'm fighting a bill since MAY that has the wrong billing code. I went to a dietician for diabetic education on cholesterol, which is covered 100% by insurance. The billing code was submitted as nutritional counseling, which is NOT covered by the insurance company, to the tune of $118.00. Same amount of time, same person, same service, WRONG CODE.

So I call the billing department. They can't change it without authorization from the person who put the wrong billing code in the first place (the dietician). So I call him. Yup, no problem he'll change it.

That was the first month.

Second month I get another bill. Called said dietician again. Left a voice mail, AND an e-mail. He forwards my e-mail to some other guy, copying me in. Doesn't actually reply to me. A-hem.

Nothing happens.

Third month I get ANOTHER bill, this one telling me I need to make arrangements or I will be receiving a call from collections. {Steam beginning to trickle from ears.}

SO. I backtrack to the original doctor who told me to go to this person in the first place. I e-mail her (the diabetic specialist), and ask her to call either the dietician or the billing people and give them the right freakin' code. I also e-mailed the billing department to tell them that I am NOT paying this bill, in part OR in full, because it was coded wrong (not my problem) and my insurance will cover it once they straighten out this mess.

As a person who deals with appointment after appointment, and as a person for whom stress exacerbates MG symptoms, I DO NOT NEED THIS!!!

I'm VERY thankful that I have insurance. I am very that it covers as much as it does. Otherwise, I'd be in the poorhouse. When it's right, it's fantastic. When it's bad, it's UGLY bad. Can I get an Amen?!?

I also just had to file a claim with the insurance company (this is what the docs normally do) for the new trach I got after I had my surgery. I had to get this piece of paper from the doctor, that piece of paper from the manufacturer, file this paper here, and that paper there. I filled out this form, and dotted that "i", crossed this "t", gave them my social security number, blood type, and promise of a second born child, should I ever have one.

And it still won't be enough. They will send their beautiful form letter, telling me I need to jump through THIS hoop, not THAT one, and that IF I stand on my head with a pink tutu on, AND if I walk backwards on my hands 3/4 of a mile, they MIGHT cover about a third of what I actually paid.

So I guess there's only one thing left to say: God Bless capitalism, and God Bless the USA.

Monday, October 13, 2008

Dead Roosters and Other Happenings

I TOLD him it would happen.

As soon as we knew that Henrietta was actually Henry, I said he had to go.

We got chickens this year around Easter. I love them. I love the eggs. We SPECIFICALLY picked out all girls. Or so we thought!

Growing up in the city, animals were pets. Period. So I'm learning about this country life, and the fact that you can actually HAVE an animal, NOT have it be a pet, and EAT it if you want. Whoa. We have thus started small, with chickens. They are so funny to watch...they run around the yard and chase birds.

I only named 2 of them, so I wouldn't get attached. We had 20 all together, but one died about 2 days after we got it. Yes, I bawled like a baby. I made Doug bury it.

Anywho...I digress. Henrietta, one beautiful bird that I named, started crowing one day. Well, crap. That meant Henrietta was really Henry, and we had to decide what to do. I wanted to find a home for Henry right away, although if you've never seen a rooster crow up close and personal it's quite entertaining. It appears as if, at the end of the cock-a-doodle-doo, that Henry's eyeballs were about to pop out from the strain. I didn't realize roosters could have expressive faces. HYSTERICAL. I laughed so hard I almost peed.

Then, when Doug's back was at it's worst, I was going out in the morning to let the chickens out. Day One: uneventful. Day Two: the attack. I opened the chicken door on the near side first. Mistake. By the time I opened the far door, and walked back to the gate, Henry attacked. I had shorts on. He charged and pecked my leg. I turned and punted. Even though his wings were clipped, Henry flew.

I told Doug, if he ONCE goes after Jacob, I will kill him myself.

Well, Saturday It Happened. Doug had the gate open, and the chickens were milling about, and I felt very proud of my fowl ownership and newly acquired egg-collecting skills. Then, I saw that Henry was out. I placed myslef in between Jacob and Henry, ready to go on the offense. Somehow, Henry skirted me while Jacob took off running, and Henry flew right into him, pecked his nose, and knocked him down.

Now, I am NOT a proponent of cruelty to animals. It was purely the Mama Bear in me. I kicked that rooster harder than I thought I could. He was pretty tough though...he went down and immediately got up for more.

So Doug came out and I said, "Get your gun."

He didn't listen, so I said, "I'm serious."

He said, "Um, why?"

I said, "Because I'm going to shoot Henry."

Something about my choice or words, the half crazed glare in my eyes, or maybe the gravel in my voice and the screaming child in my arms had something to do with it. But the man said nothing, turned back to the house, and got the gun. I wanted to do it, but apparently something about my lunatic state prevented my husband from giving me a loaded firearm. So, he did the deed.

We started plucking, but he didn't even have enough meat on him to bother. He was all beak and feathers. I asked Doug if he wanted another feather pillow, but he passed. So we buried Henry too.

The other major event Saturday was that I actually got my trach in all by myself. I couldn't beleive it. Last year at this time I wouldn't let anyone but the doctor TOUCH it, and swore I'd pass out if I ever had to do it. It's amazing what you CAN do if you have to. This was a MAJOR event for me, but reading this back, it really pales in comparison to the rooster. {Sigh.}

Have a good one!

Thursday, October 9, 2008

Now what?

Oy vey.

First, I must thank my dear friend Joanna for 1. bringing dinner over last night (it was delicious!!) and 2. helping me get my "new look" on the blog. Do you like it?? I was so geeked about it I just stared at it for like 10 minutes. Of course the gorgeous picture of my little one helped, too! So thank you, Joanna, for being there for me...even when I KNOW you were so tired from your long day!!

Ya know, God has SO shown me the last few weeks that I don't HAVE to have the "security" of a church, the four walls, etc., to have Him take care of me by providing FANTASTIC friends. Friends that REALLY care, who will help me no questions asked. (Except, "what can I do??") Thank you ladies...I love you all!!!

My husband, the strong, amazing, Davy Crockett/McGuyver wrecked his back last week. Actually his back and hip. He was clearing sandbags from his workplace (it almost flooded a few weeks ago when we had tons of rain). His hip came out of the socket and wrenched his back as well. He has gone to the chiropractor every day...was diagnosed with a sprained hip. Nice. However, his chiro. is AMAZING. He came in on Saturday AND Sunday to give Doug a treatment...God Bless You Dr. Lou!!!

Anyway...thank God I had the surgery to enlarge the trach, because I do feel better, and I've had to do more around here...Doug has been in so much's awful. He's doing better, but he's still got a ways to go. And of course, his work-a-holic nature is FREAKING out because he can't chop wood and take air conditioners out and leap tall buildings in a single bound.

Well, if you're reading this honey, you're still Superman to me.

Tuesday, October 7, 2008


There are all kinds of grieving. When you're diagnosed with a chronic illness, you grieve the life you have to leave behind. When you are forced to quit a job because of your health, you grieve the loss of your job. You may grieve certain relationships who can't handle a diagnosis for which there is no cure. And then there is the loss of a loved one. That grief is soul-stripping. The rip-your-heart-out kind of grief that you wouldn't wish on your worst enemy.

My best friend Linda was diagnosed with Stage IV metastatic endometrial cancer on November 1, 2007. After a valiant fight of 11 months and 1 day, Linda went to be with Jesus. I got to see her the day before she died, at Faith Hospice. She was in and out, mostly out, yet there was still enough "Linda" there to recognize. I know that she knew who I was, knew that I was there, and knew that I loved her. I held her hand and wiped her brow, and begged God to bring her home. I wrote her a letter a few months ago and told her that even though I was still holding out for a miracle, I didn't want to leave anything left unsaid. I told her exactly how much she meant to me, and how she touched my life.

Linda was the kind of friend that you could wake up in the middle of the night if something horrible happened. She was the kind of friend you could depend on, 24/7, 365. She was LOYAL. We had one fight in the entire 14 years of our friendship. She was so quick to forgive me for being overbearing and way too into her business. She had a quiet strength and determination that many people underestimated. Linda loved deeply. She didn't make friends quickly, but when you became her friend, you were her friend for life. She was a friend worth fighting for.

Linda's favorite verse was Zephaniah 3:17; "The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." I remember the day she found this verse. I walked into her apartment and she showed it to me first thing. She had written it on a piece of paper and put it on her end table. That God, the Maker of Heaven and Earth, would rejoice over her with singing made Linda almost giddy. I don't think she realized how many people rejoiced over her.

So to my dear, precious Linda: I will love you always, I will forget you never. You have indelibly changed my life. While my heart is broken, my spirit is soaring because I know that you are now whole, healthy, happy, and pain-free. There are no tears beyond Heaven's gate. There is no more night. There is no cancer. To the Best Friend a person could want...a sister, really. I miss you already.

Saturday, September 27, 2008

Trach Trauma

ARGH. I love the new, bigger trach, but oh my STARS is it horrible to take out and clean every other day. I can pop it out no problem, which amazes me, because before I couldn't even THINK about it...or look at it when it was out...just freaked me out having this hole in my neck! Now with the surgery it looks kind of like an inny belly button. WAY inny. : )

Anywho. Coming out is no big deal. Putting it back in however, OW. Holy Pain in the Neck Batman! Ar ar. It's like giving birth backwards. Or trying to shove a large lemon up one nostril. Or...well, you get the idea. I clean the outside twice a day, but have to take it out to get the inside really clean. Yikes. I just can't put it back in. I tried the first couple of times, but I literally can't push hard enough to get it in. Plus, it's really hard to force yourself to cause bodily harm to's like your brain fights against your hand trying to shove it in. My hand and arm were just shaking with the force I was exerting to get it in, yet it wasn't going. So thank God Doug isn't squeamish, cuz he's the one to put it back in.

I have felt like crap the last couple of days...double vision, really tired, a bit weak. Jacob has a little cold, so I wonder if I'm fighting it off. Germs make my antibodies get stronger (like anyone else) but then I get MG symptoms. Grrr.... Stress makes all my symptoms worse, and dealing with a best friend with terminal cancer doesn't help much. We were going to see her tomorrow, but with Jacob having a cold, I don't want to bring ANYTHING to her to get her sick. We'll just have to wait til he's healhty again.

Anywho...that's all for now.

Wednesday, September 24, 2008

Good friends and bad interpretations

My hubby and I had the best time last night. Since my recent trach surgery, I have been breathing so much better. We went to see friends of ours...they have twins 6 weeks older than Jacob, and a 4 year old son. We always just pick up pizza on the way so no one has to cook, an dit's fantastic. They are true friends. If they say they'll pray, they will. We have so much fun with them, yet they are the most amazing Christian couple. They are terrific parents...terrific friends. We are so blessed to have them in our lives. We met them at a previous church, and we will be friends for life.

While we were there we werew talking about my illness, and my original hospital stay back in 2000. That got me thinking about the first church that abondoned us. Depressing.

This is actually now much later in the day, and I received an e-mail from an elder from the church we just left. I had written them a letter telling them we were leaving and why. I was upset that we had been going there since January, and yet when I had surgery to revise and enlarge my trach, no one called when I got home, no one brought a meal, sent a card, nothing.

Anywho. So this elder wrote a scathing letter back to me about how I can't possibly expect entire congregation to meet every need. (Which is, of course, ridiculous, and I didn't say anything about that.) Because then, "everyone would have to quit their jobs and wait around for a need to meet." Can you say, over-reaching?? She also was kind enough to point out that any time she's heard me talk (which is probably once?) she notices that the first thing I talk about is my diability. Um, yah. Someone stares at the hole in my neck and asks what's up, so I answer. Next time I guess I should quote her and just say I'm not identified by my disability.

There were some other lovely, uplifting (uh, not so much) things she said, but the best was this:

"I sincerely hope you do ponder your expectations as in my humble opinion they are selfish and inappropriately placed."

SELFISH and INAPPROPRIATELY placed. Hmmm....if Christians can't depend on other Christians to help them in a time of need, where do they go???

So, forgive me for thinking only of myself as I was struggling with a neuromuscular disease with no cure (which I am NOT defined by), recovering from surgery and raising a 2 year old without being able to speak because of the ginormous trach in my neck.

I'm upset, I'm angry, but behind all this folks, I'm just sad. I feel so rejected. By the church no less.

OH, and just as an added bonus, my best friend in the world has terminal cancer.
No one ever said life was fair. But they never said it would be so cruel.

Tuesday, September 23, 2008

Busy, busy, busy

Ya know, I can't believe how much people take on. It's like the busiest, most exhausted person wins! But wins what? Lost relationships? An ulcer? No sleep? I have to admit, I use to be a busy person. My illness slowed me way, way, WAY down. TOO "way down" if you ask me. But it really makes me treasure what's important. I guess if there's one thing I'm thankful for by having a chronic illness is that I try not to take important things for granted. I ask myself.... Will this matter 10 years from now? It may matter an HOUR from now, but does it have ANY lasting value? If something is important enough, you WILL find time for it.

Here's a big shocker, folks, hope you're sitting down. It's not a competition. If you get everything done on your list of 17 things to do today, but had no contact with a true friend, or helped no one, or didn't pass on a kindness to a stranger, then did today really matter? I KNOW I can't be the only person on the planet who genuinely cares about people, and will make time for what's really important. But that's the key. You have to MAKE time. My theory is, if it's important enough, you'll find time for it. You find time to watch your favorite program. You find time to eat dinner. You find time to go shopping. You find time to read a good book. You find time to ______. And I'm still preaching to the choir, because there are many times that I could spend with God, that I choose to do something TV, read, etc. We just have to prioritize.

Some folks genuinely have busy lives because they ARE taking care of others; a sick friend, an elderly parent, a down-on-their-luck neighbor. And bravo to you. But don't forget that even doing all these "Good Things" you can still be too busy.

In our world of immediate gratification, it is an important lesson to learn to slow down. I have had to by force. But it really has made me step back and see that so many of us are, or were, just like crazy little ants running around and going and going and going.....

So please. Take a minute to stop today. Stop and spend a few minutes in complete silence. Stop and spend a moment in prayer. Stop and drop a card in the mail for a friend, or a shut-in at church. Stop, and ask your pastor what you can do to help.

We area all in this so called life together, and we all need each other, whether you want to admit it or not.

Monday, September 22, 2008

Cheap therapy

Good morning!

Well, my friend Joanna said this is cheap therapy, so here goes. I have no idea who will find this blog or how, but for now, it's my vent. I have myasthenia gravis, a neuro-muscular disease. It's pretty crappy. I've been diagnosed for 8 years now, almost 9. But I've had this disease for about 13 years. I was hospitalized in 2000, and almost died. I have a trach. I also have a fantastic husband and a precious little boy. He (Jacob, my son) is truly a miracle. I didn't think I could get pregnant, but we did, right away, and he is the light of my life. My husband (Doug) is a cross between Davy Crockett, Daniel Boone, and McGuyver. He can do almost anything. I love him with all of my heart. I went into the hospital SIX WEEKS after we got married, and he was there..for better or for worse, in sickness and in health. Amazing in today's self-first, me-me-me society.

I think one of the things I hate the most about this God-awful disease is that is can be so "invisible" to others. I'm SOOOO sick of hearing, "But you look so good!" Except for my trach, I look pretty normal. However, any moment I would have muscle weakness, start slurring my speech, have trouble breathing or swallowing...start choking on my own spit. Lovely, I know. I park in handicapped, especially at the superstores, because by the time I've walked through, I may be so exhausted I can barely make it to the car.

It's so hard taking care of a 2 year old with this disease. He wears me out by noon. It will be a little easier when he gets a little older...but right now it's GO GO GO! My parents are awesome, and come out all the time to help us. They live about 40 miles away, so it's not like it's around the corner either.

So I guess I would encourage you, if you are able, to see if there is someone YOU can help, and dive in.