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 depression...how 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 Linda...it's like I had so much I was just getting overwhelmed and had no idea where to start...so 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 cooperate...like 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 Mercedes...at 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

Mammo-JAM

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. Anywho...it 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

Stuff

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 slow...like 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

Venting

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!"

M'kay.

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.