So Much On My Mind

Tina and the kiddos left yesterday, and I can't believe how really sad I am. I got used to having a girlfriend right here to talk to non-stop! And Jacob was having so much fun with the kids. A few scuffles, but much more fun.


We watched American Idol tryouts (don't know from when, they were on the DVR) and the last person we saw was a young man whose fiance was in a horrible car crash 2 months before their wedding. He said, "I was ready to say my vows, to love and to cherish, for richer or poorer, for better or worse, in sickness or in health. What kind of man would I be to walk away now?"


God BLESS you young man. (He could sing too!) THAT is committment and faithfulness. It also reminded me of my husband, and how almost the same thing happened to him. He said the vows FIRST, but then 2 months later I'm on my death bed, literally. And he honored his vows. That is so rare today. So many people think, well, if it doesn't work, we can always get divorced.


Doug and I don't let that even BE a possibility. We simply don't let the "d" word into our vocabulary. Sometimes I get really irritated with him...face it, it's marriage! We ALL get irritated with our spouses.

But really, look at what he has endured. Eleven years of a chronically ill wife. That is NOT easy. And (I know, believe it or not...) I can be a bit difficult at times. Really! It's true! I know you could never believe that from my docile personality....Yes, it IS getting deep in here!

Doug has been an amazing husband over the last 11 years. He has been my best friend, my confidante, my cheerleader, my nurse, my caregiver, my taxi driver, my carrier of medical equipment, my wheelchair pusher, my hand holder, my supporter, and the love of my life.

So. I am looking forward to some new opportunities as well as closing some doors to other things I thought would permanently be part of my life. (THINGS not people). Lots of weird things going on, lots of good things.

Things are finally looking up physically, and more importantly, emotionally. Trying to keep my chin up no matter what....we'll see what happens! I really am a hopeless optimist!

Yes, I'm Still Alive!

What a week! My friend Tina and her adorable kids are leaving tomorrow...I can't believe it's been a week already! Jacob will be lost without his playmates. How wonderful though, to have Jacob occupied all week, be able to rest whenever I needed to, and have a girlfriend to talk to as well. Awesome.

There are some wonderful things going on and some not so wonderful, but the wonderful are starting to outweigh the rest. I can't go into too much detail, but I would ask that you would pray for guidance for me and the folks at Love INC who are so amazing in their outreach...that God would bring the right people together to fulfill His will and His desire for the sick and imprisoned, the hungry and naked, the stranger and the widow all be attended to.

Love INC is nation-wide...I would love for you to check out this ministry! Click here to find out more.

On another front, there is a fantastic organization locally that is offering 2 hours every other week to come and clean my house. I am so thankful. I finally got hooked up with the right people, and though I see some doors clearly shutting, I see so many others opening up.

I am continuing to improve in health, Praise God. My vitamin D level is no longer considered "deficient" so THAT has helped my energy level as well. Between that, the breathing machine during the day, the rest I've been able to get this week and medication changes...I think we may be one to something! Today would have been my week for plasmapheresis, and I don't feel like I need it at all!! That is HUGE.

I will be back more regularly from now on...I just was so stinkin' busy this week! Looking forward to sharing more as I get details of some really cool opportunities.
Have a great weekend!

More From Beyond Casseroles....

More great tips from Lisa Copen's book "Beyond Casseroles: 505 Ways to Encourage A Chronically Ill Friend."

• Learn a new craft together. If she has a favorite craft, bring her extra supplies.


• Organize a "love shower" and have people send a note/visit/call each day for a month. It's a great way to get one through a difficult time, such as the anniversary of a lost loved one.


• Bring her a hammer and put a note with it that says, "For picture hanging or other hammer emergencies call....{your number}


• Bring her cute refrigerator magnets to hang the notes you plan to send her.


• Bring him a miniature tree during Christmas


• Send flowers


• Give her a devotional book written for people with chronic illness
• Ask her how you can best support her.
• Remember, your time is always more important to her than any amount of money you will spend.
• Participate in an "illness walk."

Happy Monday all.

A Servant's Heart

I haven't blogged for a few days because I wasn't in a very good place, and I didn't want to be negative. I have been trying to get help around the house for a little over a month now. What I had found previously is that there is a giant gap for people like me in the "system."

Well. I have had some amazing things happen since my last post. A dear friend that I haven't seen for a while came to visit. It was SO nice to talk to another adult! Thank you Shawn, for coming out even in the yucky weather!

I talked to a wonderful lady at Love Inc. yesterday. After we talked for a while, she said it was total Providence that we were talking, because she and her staff were just talking a few days ago about how they could expand their ministry to help people with disabilities. I was like, GO GOD!!! It's amazing how He works things out.

My DREAM is to be healthy enough to go around to churches and speak about living with chronic illness. I am not near that right now, but if I can get connected with an already super-connected, wonderful ministry like Love, Inc....WOW! Maybe I CAN get my message out so other people in this same situation can be benefitted! How cool would that be!?!?

THEN....a friend of mine from college, whom I have not seen for almost 20 YEARS, e-mailed me and told me she really wanted to drive up (from over 4 hours away in another state) with her 4 1/2 year old son, 3 year old daughter, (and pregnant self!!) and stay with me for like a week and make a bunch of food and play with kids and let me rest.

Are you KIDDING??? Such graciousness and generosity blew. me. away. Of course I said yes, after the shock wore off (and after I asked my husband!). I am still just stunned that someone would pack up their ENTIRE life to come to MY house, for the sole purpose of helping me and my family.

God must be so happy to see such a servant's heart. I mean, really. What a demonstration of Christ's love. I am probably going to offend at least a few people by what I say next, and I'm not trying to be offensive, but I'm not going to start beating around the bush now, so I just have to say it.

This woman (I'm not using her name just in case she doesn't want the publicity : ) is walking out the words of Jesus. Jesus didn't say, "I'll pray for you," (well, to Peter, but you know what I mean) or "I hope you find some help," or "If I didn't have..." this obligation, or that problem or this situation to deal with.

I'm not trying to make anyone feel guilty. That's not neither my job nor my business. It's not my job to convict. I understand people have busy lives. I get that. I really, honestly do. But I wouldn't be me if I didn't state the obvious. And I know I'm up on my soapbox but this is SO personal to me!!

In Matthew 25: 35-40, Jesus said: "‘Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world: for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in; I was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me.’ “Then the righteous will answer Him, saying, ‘Lord, when did we see You hungry and feed You, or thirsty and give You drink? When did we see You a stranger and take You in, or naked and clothe You? Or when did we see You sick, or in prison, and come to You?’ And the King will answer and say to them, ‘Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.’ NKJV

I don't want pity. I don't want sympathy. I'm not trying to anger anyone. But I WILL challenge you. Can YOU help someone? It certainly doesn't have to be me. Many of you who read this don't live anywhere near me.

I know some of us can't. Some of us are in the position of being hungry or naked or sick or imprisoned. But dang it all, some of us CAN and aren't. Some of us need to get off our butts, quit saying, "I'll pray for you," and get MOVING!! Stop. Making. Excuses. Feed the hungry. Clothe the naked. Visit the sick and imprisoned. I've said it before. It's not rocket science.

It's Love.

Frustration

If I were single (with Jacob), I could get help. (Most likely).

If I were on welfare, I could get help.

If I were 60, I could get a home health aide.

If I were on MedicAID I could get help.

But because I'm married, I'm "only" 40, even though I'm on disability because I CAN'T work (I've tried to go back since being diagnosed), and was forced by insurance to go on MediCARE, I cannot get help. I can barely take care of myself and my son, but no, I don't need assistance...I'm only 40! A spring chick! You have to be at least 60 to be sick or weak enough for help.

How perfectly logical! Let's pick a random age, and no matter what, if that person is said age they can get a helper. Nevermind the young mom fighting multiple chronic illnesses.

Why is it that some welfare Mama with 4 kids by 3 different men, who is completely healthy, who CAN work but doesn't, (because God forbid she get off her lazy butt or break a manicured nail), can soak the government for money for everything from toothbrushes to lottery tickets and alcohol, to filet mignon and gourmet ice cream, but a woman trying to live her life to the best of her ability WITHOUT asking for help for 10 years, who finally just CAN'T do it alone anymore....she can't get squat?

Tell ya what, just give me back the tax money I'm paying to let Badelia Marie keep squirting out kids. I'll use that to pay for my own help.

Ya, I know. The world is broken. Life is unfair. Well, Boo hoo. Tell me something I don't know. I know that SOME people who are on welfare need it. And I'm good with that. But when I see people on it because they are lazy or because they're being rewarded for living a scandalous lifestyle, that really ticks me off.

Whatever. Time to go do a breathing treatment. I'll settle down eventually.

Not Waiting for the Shoe to Drop

I'm reeeaaalllly trying to NOT think about the proverbial "other shoe" dropping. It's tough though! I am still in the mindset of remembering where I WAS physically last month, as a matter of reference. I need to remember how easily I went down hill, how gradually, and how bad I got. It will take much more time to completely recover, but I'm getting there! Even my knee and leg are feeling better from my fall! Hallelujah.

I have to pace myself; like when we run errands, we have to stick to 2 or 3 stores MAX, not 8 or 9~!! I also had a great suggestion from a fellowMG'er. She sets an alarm clock to go off then makes herself stop wherever she is and rests.

How are YOU all doing? I would really like to hear about something WONDERFUL in your life. Please leave a comment and tell me something going on in your life right now that is FABULOUS. I know there's SOMETHING. So let's share, and encourage one another!

A POSITIVE update!!!!

Yes, I am excited. Yes, I use exclamation marks way too much. Deal with it.

Exactly one month ago today, I went to the E.R. and was admitted to Bronson Hospital overnight. I couldn't catch my breath, and it scared me. For the first time I truly realized how hard I had been pushing myself to do all and be all. Well, I wasn't, and I'm not. I never will be.

But I am okay with that now. I think that's been over half the battle. I've had my antidepressants changed, too, which is helping dramatically. Do I still get angry? Of course. Sad? Yup. Frustrated? Most definitely.

I'm almost afraid to hope, if I can be perfectly frank. But glory to God, He made me hopelessly optimstic, and didn't give me a "give-up" gene. He is the Reason I am who and where I am today.

Anyway. Doug has been amazing. The last 2 days we have steadily been working in my office. I've been doing a lot of sitting, going through files, etc., and Doug's done all the hard stuff. We changed out all of the picture frames so they (mostly) match, and everything is off the floor, my deskops are clean....

Now some of you are thinking, "And....???" Well, you didn't see it before. This room was a catch-all. It caught ALL the crap that no one wanted anywhere else in the house. Now it's neat, organized, and labeled! Oh, JOY!!! My OCD brain is SOOOO happy. I am so motivated to do school with Jacob now! I'm sure part of it has to do with feeling better, but before I would walk in this room and just be so overwhelmed....now I LOVE it!

So anywho....now the biggest prayer requests are that I get some help around the house (home health aide) on a regular basis, so that I can use my energy for my family. Secondly, that God would protect my kidneys....between being diabetic and now the cyclosporine (which proceses in the kidneys), I have to have blood work done, starting in 5 days, every two weeks to check my kidney function. It just HAS to stay good.

Thanks to all of you who hang in there with me on this journey. I love you and couldn't do it without you.

Great Quote by A.W. Tozer

"Father, I want to know Thee, but my cowardly heart fears to give up its toys. I cannot part with them without inward bleeding, and I do not try to hide from Thee the terror of the parting. I come trembling, but I do come. Please root from my heart all those things which I have cherished so long and which have become a very part of my living self, so that Thou may enter and dwell there without a rival. Then shalt Thou make the place of Thy feet glorious. Then shall my heart have no need of the sun to shine in it, for Thyself wilt be the light of it, and there shall be no night there."
A.W. Tozer

Book Review: Blind Sight by James H. Pence

I had the privilege of reviewing the book "Blind Sight" by James H. Pence for Kathy Carlton Willis Communications. Blind Sight is an amazing story of redemption and repaired relationships.

Thomas Kent just wants to die. His wife and children are gone, and he is surviving with guilt and shame. Then he receives a bizarre phone call from a man he barely remembers from his college days named Peter Bishop. "Remember the promise...save my children!"

That message leads to an airport to pick up two children, twins, one of whom is blind. Micah and Michelle are the children of Peter and Justine Bishop, formerly of The Fellowship, a brainwashing cult seeking power and control of the country.

The last thing Thomas wants to do is get involved with children. After all, it hasn't been that long since his own children were killed. He just doesn't have it in him...or so he thinks. After driving to the airport and seeing the children, he tells them he's sorry, but he just can't help them.

Then, he sees an attempt on their lives and can't help but step in. What follows is a whirlwind of escape attempts as they are targeted by The Fellowship. They know that the children will lead them to Justine Bishop, the only woman in the country who could bring The Fellowship down.

This book is amazing. It's well-written, has a fast pace without being confusing, and has a beautiful story of redemption between God and man, as well as repairing human relationships. Blind Sight moved me.

Although it is fiction, this book saved a man's relationship with God in real life. Terry Caffey, his wife and two sons were brutally shot while they slept in their Texas home. The house was then burned to the ground, its inhabitants presumed dead. Somehow, Terry survived. After the house had been demolished, he went back to the site and found a page of the book Blind Sight flattened up against a tree stump. It was burned around the edges. And the specific text on that page enabled Terry Caffey to move on with his life, and start speaking about his experience.

I highly recommend this book.

About the Author: James H. Pence is not only an author, but a speaker, chalk artist, singer, and editor. He does programs at churches and other civic venues on a regular basis. Mr. Pence also teaches workshops on writing, and speaks to general audiences and churches about forgiveness, and living with hope after a terrible tragedy. He has a Bachelor's Degree in theology from Dallas Bible College, and a Master's Degree in Biblical Studies from Dallas Theological Seminary.

This book was given to me for review by Kathy Carlton Willis Communications.

Cool Gadgets

Had another visit from the O.T. today. Man, they have some cool gadgets! I got a new "reacher" with a better grip, and you can adjust the tension by how hard you squeeze the handle.

He also gave me a sponge on a stick to wash my feet in the shower....a grab bar to put on the wall BY the shower (it's even white so it matches!), a really long shoe horn...but the BEST thing I got was a sock-assist.

You put your sock on the blue thing, then put your foot in, and pull on the ropes to pull your sock on!

I suppose everyone else knew about these cool things, but I feel like it was Christmas again! This is SO easy to do! I was so excited. I had to ask Jacob help me get my socks on the other day and he did NOT like it. I didn't either, he's 4 for crying out loud.

He's such a big helper though! Today he pushed the laundry basket to the washer, loaded it, and then moved the clothes from the washer to dryer. (Frontload washers). He earned himself a new little John Deere excavator-digger-tractor- thingy. He's amazing. What a blessing.

Yesterday my house was descended upon by my sister, my niece, my friend Linda, and my niece's little baby girl. It was a bit insane and overwhelming, but they worked so hard! Jessie (my niece) took down our Christmas tree and all the Christmas decorations, Lori was cleaning the kitchen and bathroom, Linda brought THREE meals, vacuumed, helped clean, helped wash bedding....my goodness. It was a whirlwind, but what a blessing. Thank you ladies!!!

I'm feeling okay....it was a busy morning so I'm pretty much pooped out, but I was amazed at what I did accomplish this morning with my little Jacob's help. Thank you Lord for loved ones.

Odds and Ends

I've got a couple of pictures to share today. I'm feeling better....I think that mechanical ventilation (I should say VOLUNTARY medchanical ventilation) is a wonderous thing. I'm having to work up to 30 minutes at a time because it is such a workout for me. Just breathing! I really can't believe how bad I was....and how I didn't know it. There's a lesson in there somewhere; like the frog on the stovetop...start in cold water, just keep turning it up a teeny bit at a time, and the poor little bugger will never get out.

I think the enemy is like that. He comes to kill, steal and destroy. But I DON'T think he always comes at us guns blazing...he sneaks and connives and weasels...little bit by little bit...just like my health has been getting worse little bit by little bit.

We MUST pay attention! To our physical bodies, our spirits, minds and emotions. Be on guard!

Anywho.....enough words.

Jacob in our hotel room in Ann Arbor. He was SUCH a good boy!

We got home to this....why I LOVE winter.
The only bummer is that I have to take the pictures from inside, and miss the fun. (But I do stay warm!!)


I think we were missed. Notice the paw...Blackie will lay down next to Jacob and put one paw around his shoulder just like a person!

Up close and personal. It's like they were born in the same litter!

Just a couple of pups. Nothing like a boy and his dog.

Hi-ho, Hi-ho, It's Bi-PAP-ping We Go

Yes, that is the most bizarre title of all time. I really just want you to all walk around with the "Off to Work I Go" song stuck in your head! (You're welcome!)

Doug dug (ar, ar....my name is a verb too!) my ancient Bi-PAP machine out of the attic yesterday afternoon and "McGuyver-ized" it. I use the nose mask over my trach and kind of smoosh it together, and Doug got all the other hoses and pieces parts together and tweaked the inspiratory and expiratory pressures til it felt comfortable.

In case you are wondering, a Bi-PAP is like a ventilator. When you breathe in, it gives you a push of air in. When you breathe out, it kind of relaxes and the air comes out. It's kind of weird. But it is a workout! All I can think while all this air is rushing in is, "O my GOSH I can't believe "normal" people get this much air with every breath!" Yes, peanut gallery, I know "normal" has NEVER been in my vocabulary, but you get the drift. But seriously....if I could breathe like that every day, every breath! I could run a marathon!

Which also makes me realize just how weak I am...and how much I was pushing myself, and how blessed I am that nothing worse happened. I mean, where I am is bad enough...but it could have been worse. I guess God still has some work for me to do!

Anyway. I still have zero stamina. But then again, my O2 was 63%, so I suppose. Oh to rewind 20 years and gulp huge breaths of air....as much as I wanted. I know it wouldn't make a difference now, but it's amazing what you THINK you want when you're younger.

And isn't it ironic that we won't listen to others? There are SO MANY wise people out there who have much to impart...I wish I had listened when I was younger. Again, it wouldn't effect my health the way it is now or anything, I just know I missed out on some blessings and probably got a bunch of hurts I could have avoided.

I guess that's why part of me wants to document my journey. If indeed ONE person has a better life, avoids a huge mistake, gets benefited in some way, grows closer to the Lord....then it's all worth it. If more than one...what a blessing!

I have a physical therapist coming to reopen my case this morning, and a friend coming over to help with Jacob (and me!) as well. Then the O.T. comes at 4:30 (after my nap!)...full day for a sickie! OH, and my new 10 minute breathing workouts. Whew!

Update

So there’s good news, bad news, some questions answered and more that arose on our lovely jaunt to the U of M these last 2 days. Right before we left, however, I was getting ready to get in the shower, and one minute I was taking off my underwear and the next minute I’m on the floor, mostly on my right knee, but basically all fours. Happened so fast I don’t even know how it happened. I hurt it pretty bad, but I could move it, so I called Doug (I had my phone with me) to tell him what happened and he said he was on the way ASAP.

How I ever got up, I don’t know. It was adrenalin I suppose. I didn’t dilly dally down there I’ll tell ya that much. As I got up though, I could visibly see my knee growing. Right on the knee cap. Fluid. Bluish. Lovely.

I gimp over to the freezer to get out Old Faithful Icepack (bag of frozen lima beans) and immediately get ice on it. Then I call my mom, and lost my mind right there on the phone. My poor mom. She’s in Florida for crying out loud. It’s not like she could run over and kiss my boo boo better. But I’m telling you, sometimes MOM’S are the only ones who will do. So she kept me somewhat sane until Doug got home.

So I am lovely shades of purple. Thankfully, I think I actually ricocheted off the toilet just above my knee, because I have a huge knot there…I know. I don’t think I’ve even fallen when Doug wasn’t here. It was scary!!

Anyway. So the drive to Ann Arbor was uneventful. Thank you for praying!!! Jacob slept the whole way, we got to our hotel, he woke up happy as a clam, and after we got settled we went out for supper and to Target, even though I couldn’t walk very well.

Friday morning pulmonology tests actually go okay. They also did another arterial blood gas. The kid that did it (and I stress KID) really did a great job! I didn’t hurt much at all. It’s uncomfortable of course…but usually it’s downright PAINFUL. There were 3 people in the lab room I was in, and 2 were older ladies (45-50) and then David, all of probably 22! The lady in charge, Karen, asked David to do the ABG. I was like, okay I know this is a teaching hospital but if you could only understand what I have been through in the last few weeks….

So I walk over and I say, “David, you’re REALLY good at this, right?” He kind of smiled and said, “Yup. I am.” So I was like okay!

And he was. Lovely young man.

Karen rigged up a special thingamajiggy that was able to get the breathing tests they wanted. The results were about what I expected. I’m able to utilize about 50% of my lung capacity right now.

On to the ABG. The GREAT news is that my CO2 was NOT bad! That’s hugely good news. It’s also kind of bad though, because if it was ONLY MG involved, I would be trapping CO2 also. The BAD news, leading to the rest of our discussion, is that the O2 they measured in my arterial blood was only 63%. Low normal is 90%. So.

The only way to improve the closure of the lungs at the bottom is through mechanical ventilation. So it’s either during the day on this cough machine, or a vent at night. Dr. Teener is working with my pulmonologist at Borgess to try to get this machine. What we DID find out is that it’s basically like a Bi-PAP, which I happen to have up in my closet. McGuyver Doug will just have to rig something up for my trach so I can use it. I know he can. He’s amazing.

MORE good news is that I get to take a break from pheresis!! Whoo-hoo!!! It seems not to be making that much of a difference, especially after having 4 in two weeks. So I am VERY excited about that.

We are also trying a new medication on top of the CellCept for now. Cyclosporine. Once I’m on the full dose we will see 1. If my kidneys can handle it, and 2. If I can go down on the CellCept.

He also gave me Mestinon to use as an acute symptom-treater. For example, if I’m having a really bad time with my speech at a certain time, take one and see if it helps. So. Between new medication and SOME kind of mechanical ventilation, I think we are on the right track to figuring this out and getting me some energy back.

The Rituxan is still very much an option if the cyclosporine and breathing machines don't improve the MG.

Oh yah, the one bad thing is that I might have interstitial lung disease from all the crap I’ve been breathing in unfiltered for 10 years, and there’s no treatment for that, so we’re just not paying that much mind right now.

Thank you thank you thank you for your prayers and encouragement. I could FEEL people praying, and would love your continued prayer support.

Here We Go

I HATE driving in the snow. Well, technically I won't be DRIVING, but you know what I mean. We are getting pounded with lake effect snow, and have to drive 150 miles to the hospital. I would much rather just curl into a ball and forget this whole thing.

But, it's time to put on my big girl panties and suck it up.

So tomorrow will be a long day. Starting at 10:00 AM with a visit to the pulmonologist. It's very difficult to do pulmonary function testing with a trach (especially a trach without a cuff)....so it will just depend on what they can actually test to see if they can determine if this is restrictive airway disease (the MG, which I think is the majority of the problem, but who am I? I'm just the one whose BODY THE LUNGS ARE IN thank-you-very-much) or reactive airway disease (asthma). I'm sure it's some of both: I can't imagine having breathed 10 years' worth of unfiltered air into my lungs hasn't done ANY damage.

Then it's an 11:30 with the neurologist...so many questions. After all that, I get to have fork tines shoved into my arms and lay motionless for 90+ minutes and have all my blood drained out. Wooo--Hoo!!!

Whatever. I'm actually looking forward to talking to Dr. Teener because it's been forever. I really need to write everything down so I can remember what I need to. SO. I very much appreciate your prayers and support. Thank you for all the kind comments and encouragement. They help MORE THAN YOU KNOW.

“ For My thoughts are not your thoughts,
Nor are your ways My ways,” says the LORD.

“ For as the heavens are higher than the earth,
So are My ways higher than your ways,
And My thoughts than your thoughts.

“ For as the rain comes down, and the snow from heaven,
And do not return there,
But water the earth,
And make it bring forth and bud,
That it may give seed to the sower
And bread to the eater,

So shall My word be that goes forth from My mouth;
It shall not return to Me void,
But it shall accomplish what I please,
And it shall prosper in the thing for which I sent it.

“ For you shall go out with joy,
And be led out with peace;

The mountains and the hills
Shall break forth into singing before you,
And all the trees of the field shall clap their hands.

Instead of the thorn shall come up the cypress tree,
And instead of the brier shall come up the myrtle tree;
And it shall be to the LORD for a name,
For an everlasting sign that shall not be cut off.”
Isaiah 55:8-13

P.S. I'm listening to David Phelps "No More Night" Amazing!!!

Chorus:
No more night
No more pain
No more tears
Never crying again.
And praises to the Great I AM
We will live in the Light of the Risen Lamb!

Bridge:
See over there
There's a mansion
That's prepared just for me
Where I will live with my Savior eternally!

And the Fun Continues....

Got a call from Ann Arbor today, and they want me to go to their pulmonologist Friday morning BEFORE I see the neuroogist and have pheresis. They're going to do another ABG (arterial blood gas) and try to do some pulmonary function tests (which is almost impossible without a cuffed trach). SO, we (Doug, Jacob and I) will be headed down tomorrow afternoon, mid-lake-effect snow storm, to stay at a hotel so we don't have to get up at 4AM to get ready and drive down Friday. It would WAY too long of a day for me, let along Jacob. Who knows, maybe we'll leave early enough and get to go to Cabela's or something. Doubt it. But whatever.

So. They need more pulmonology info so the insurance company will pay for the cough assist machine. This is the only immediate step before the last step they are suggesting: putting me on ventilator at night to rest my muscles and stretch out my lungs. Sounds just great, except for the fact that this is what I've been fighting for the last 4 years because in order to do this, I would have to have the Shiley trach. (Just think of shoving a sharpie-sized marker with a swimmie on it through a hole in your neck. Then every time you turn your head you cough and hack and need suction. Oh, and there's the lovely 1 inch padded band that has to go around your neck, to hold the monstrosity in place.) Talk about reduction in quality of life. Yes, it really is that bad.

But what about the Rituxan, you ask? Ah, yes....the wonderdrug that may take 6 months to kick in (which I was aware of, Cellcept is the same way). The docs don't think that I will improve quickly enough to feel any better until it kicks in, and that would mean I would be susceptible to respiratory crisis at any moment. And I can't live like that. My family can't live like that.

So I am asking that you would please pray that I get this cough assist thing, and that it works. My only other option will be that horrible Shiley trach. I haven't been sleeping well...I'm exhausted already....

The GOOD news is that Ann Arbor is sending a referral TODAY to the homecare place so hopefully by next week I will have access to the Medical Social Worker. SO. I'll keep ya posted.
Thanks.

Ode to my 40th Birthday

Ode To My 40th Birthday

When I was a child
I had it in my head,
That if I reached FORTY,
I'd be SO old, maybe dead!

Surely I'd be wrinkled,
Gray-headed and decrepit.
One foot half-way in the grave,
And a preacher at the pulpit.

So imagine my vexation
When I woke up on this day,
To find that I am still alive!
"Oh JOY and happiness!" I say.

Now as I aged and time went by,
The 40 -mark had neared.
And the closer that mark came to me,
"Old at 40" disappeared!

Although sometimes I feel my age,
Many times I DO feel older!
Of course I don't LOOK that old,
(I say over my shoulder).

But truth be told I do feel blessed
To have as many years
As I have had in this ol' life,
With its trials, joys and fears.

I have traveled some, though not enough;
I have loved and lost and grieved.
I have accomplished many things
But have more tricks up my sleeve!

So Happy Birthday, self, I say,
And go out on the town.
Just make sure you have your cane
Lest you fall and dent your crown!

Quick update

One of the WORST things about this disease is waiting on doctors to get their poop in a group. ESPECIALLY non-specialist docs. 'Nuff said.

So as of today I am waiting on:

1. A referral by someone (with an M.D) to the home health care agency so I can get the use of a Medical Social Worker.

2. The "go" that my insurance will cover the Rituxan, and then the schedule for it.

3. The information about when/if I'm getting a cough assist machine to help me expand my lung volume.

I think that's it. Friday we go to Ann Arbor for plasmapheresis hopefully for the last time in 3 weeks. And hopefully I'll have the go-ahead on the Rituxan by then.

Thank you to all of my dear friends who pray for me and support me. This blog has meant SO much to me! Speaking of support, I'm gonna need it tomorrow...I'll be the big 4-o! UG!!

What's A Resolution?

Resolution: (n) 1. declaration, decree, proclamation
2. determination, decision, purpose
3. steadfastness, fortitude
4. solution, answer, reason



So what will 2011 hold for me?


I don't really believe in "New Year's" resolutions, but I love the word "resolve."


Resolve: (v) 1. fix, decide, set one's heart on, insist upon
2. calculate, design, intend, pursue, plan
3. dissect, analyze
4. transform
5. figure out, realize
6. remove all doubts
7. compose, mend, heal
8. declare, decree, choose to

What I love about resolve versus resolution is that resolve is a VERB. It's an action. This year, I don't want to be a noun. I don't want to be passive and let things happen. I want to be a verb.

Even when I'm physically unable "to be"......I AM.

I am strong.
I am blessed.
I am loved.