Monday, January 30, 2012


What you do speaks so loud that I cannot hear what you say.              - Ralph Waldo Emerson
How I wish people understood this.  Even before I got sick, I was a biggie on "Say what you mean, and mean what you say."
If you don't mean it, don't say it.  It's not that tough.  If you aren't going to call, don't tell me you are.  If you're not going to "stop by sometime," don't tell me you will.
If you say you miss me, show me.
If you say you love me, show me.
Words are meaningless unless your actions give them meaning.  I can spout off about anything, but unless I have the conviction to back up what I'm saying with how I'm acting, I'm just a babbling fool.
Just think about that, will you?

Sunday, January 29, 2012


Yesterday Karen and Kerry came over with Kerry's daughter Emma..
Playing hide and seek....Not sure who was seeking.....

.it was SO awesome to see them again.  Since Emma started pre-school and Karen started working part time, we don't see each other every week like we used to...and man, how I miss that!!  Miss Karen makes beautiful cakes....Check out her blog here.

THE yummiest chocolate cake with raspberry filling!!!
It was awesome.  Wonderful visit.  Plus Karen brought some meals AND made supper for us....Taco Cupcakes.  (No, not really cupcakes...)  She found the recipe on Pinterest!!

I'm so behind on my jewelry, so that's what I'm doing today...working like a madwoman. 

I will post pictures on my facebook page when I'm done.....Having a special right now (I'm going to extend it):  Buy one item at $15.00 or more, and get a second item of equal or lesser value at 50% off!!

Check it out!

Thursday, January 26, 2012

Yesterday...CT Scan

Hey everyone,

Well, I survived the CT.  They had a small wedge for my head, and it helped me feel like I was breathing okay.  The IV went in "like buttah" problem.  CT went fine, contrast dye went in fine, but then she asked me to raise my arms and rest them up against the front of the machine.  My right arm just fell right down.  I was like, "well, I can't do that.  My MG won't let me."

She was like, okay, no problem, and readjusted my arms.  All of the sudden, it first felt like my IV was snagged on something and started pulling.  Then I had the all-too-familiar horrific feeling of a blown vein, and the saline filling the tissue.  It's EXCRUCIATING.  I started yelling for the tech, who was in the other part of the room....she did NOT get it.  I was run back through the machine AGAIN, and I was still crying and yelling.  She came over: "What's going on?" 

I was like "TAKE IT OUT!!!" and she's like, "Just a minute, let me check your pictures..."  I was like, you can't be serious!! She was the only one there.  I was screaming and felt like an HOUR but it was probably about a minute or so.  However, if you have ever had this happen, it is horrific pain.  It's like your arm is burning from the inside out, and blowing up.  It was HORRIBLE.

So then some other guy shows up and gets a hot compress for it, after she FINALLY takes it out.  I'm just sobbing at this point...and I have a pretty high pain tolerance.  PLUS I had already taken my pain pill.  My arm was HUGE. Then the radiologist comes in and starts talking to me like 2 inches from my face (I do NOT like close talkers) and telling me "Don't worry, it's not the dye that went into the tissue, it was just saline." A bit patronizing and completely unaware of what the REAL problem was.

He kept saying that... "It was only saline, your body will absorb it."  I was like, Dude, you are SO clueless....JUST SALINE???  It doesn't flippin' matter WHAT it was...the point is it took forEVER for this woman to get this out while I was in unspeakable pain!

So needless to say I was very shook up.

Had to grab lunch (had salad and an ice cream cookie sandwhich!!)  Then to the pulmonologist.  Doc said there was no nodule on the CT that he saw.  WHOO-HOOOO!!  Thank you Jesus!  He said there was DEFINITELY something on the X-ray, but it was not on the CT, from what he could see.  We still have to wait for the radiologist's official report, but I'm 99.9% good about it.

Still coughin' up blood, so if that doesn't stop by the next time I see my pulmonologist, he's going to do a bronchoscopy to see what's going on.

So that's what's up.
THANK you all so much for your prayers!!!

Wednesday, January 25, 2012

I Love Baby Hats!

When Jacob was born, he had SUCH a big head. An infant hat just did not fit him.  Since he was born with transient neonatal Myasthenia Gravis, he was in the NICU for 36 days.  Some precious elderly ladies knit hats and blankets for the premies in the NICU.  Jacob was so big compared to the others; he didn't even fit in the isolets.  So the precious little hats were WAY too small.  (And the blanket looked more like washcloth for him!)

Of course I had no idea they hat such cool baby hats out there.  Some of the fleece and knitted ones are SO adorable.  Jacob was born in August, though, so even though we didn't bring him home til late September, he had SO much hair he didn't really need one.  (They didn't fit anyway!)

We had to buy toddler hats right from the very beginning.  Even though it was just under 6 years ago, the hats they have now for little ones are SO adorable. 

Jacob still has a big head...But that's just because he has a big ol' brain.  Just ask him!

This is a sponsored post

Tuesday, January 24, 2012

And The Hits Keep Coming

So I'm at the doctor yesterday waiting for them to determine what kind of pain meds to give me while I'm waiting to get into the pain clinic (need referral, evaluation, blah blah blah...but it will be worth it because this place has gotten very high marks from a good friend with the same issues as me.  Well, the same physical issues...I don't think she's quite as CRAZY as I am....).

The phone rings, obviously I don't answer.  When the nurse leaves the room, I check my voicemail.  It's very broken up because I don't have a very good signal.  All I hear is "CT scan, 12:45 the same day you see Dr. Lovy."  And I'm like, WHAT????

I was supposed to have plasmapheresis on Wednesday (tomorrow) then see Dr. Lovy.  Well, I called his office, and they said I need to come in at 12:15 for a 12:45 CT scan of my lungs, because the radiologist saw a nodule of some type in the bottom of one of my lungs on the chest x-ray I had done Friday.  So I have to have a CT with contrast tomorrow, and then Dr. Lovy will tell me what's going on at my appointment.  This is the SAME sequence of events as what happened to my dad: he got pneumonia, had a follow up chest x-ray, they saw a spot, he had a CT scan, and ended up with cancer. 

The bleeding from the trach trauma had stopped for about a day or two, and now I am coughing up blood again like I did when I had pneumonia.  My chest doesn't hurt I don't know. I'm just getting really tired of fighting this fight.  Really.  Really.  Tired.

Now I KNOW the likelihood of the same thing that happened to my dad happening to me is minute to say the least, but yeah, I'm a little freaked out.  Trying not to panic....but even though I THINK I'm not worried about it, I didn't fall asleep last night until 3AM.  I was tired....heck, I was exhausted....but I couldn't sleep.  Took another pain pill, and got about 5 hours.  Now I have to go to the dentist today to have a tooth drilled and rebuilt. Can't afford the crown part til next year.

The only thing that's helping me survive right this minute (other than the grace of God and the prayers of many, many friends) is that the pain pills the doc gave me yesterday are helping, so I'm not in ridiculous pain anymore.  {sigh}

Anyway.  I had appointments for Thursday and Friday this week too, but I cancelled them.  Too much.  I can't deal with it all right now.

So if you could keep me in your prayers, I would appreciate it.

Monday, January 23, 2012

A Day In The Life

Disclaimer:  I am writing this for ALL people with chronic illness, or multiple illnesses, who live like this all thie time, not just myself.  I do not want your pity.  EMPATHY yes, sympathy, no.

SO.  Here is what my day looks like (and this is just phone calls, which are not always easy for me with the trach...I have to cover the trach when I talk, and hold the phone in the other hand):

I have to call my pulmonologist to let him know I got my chest x-ray done at his hospital so he can look at it before my appointment Wednesday.

I have to call the dentist to make an appointment for Jacob for his first dentist appointment (yes, I know, I'm a crappy mom, he should have gone long ago).

I have to call WalMart and get some precriptions refilled;  the bottle says they need 72 hours to fill them.  (Lord knows it feels like that when you're standing in line to pick them up! : )

I have to call a DIFFERENT pharmacy to see if a medication I have been taking for years got "prior authorization" so I can get it filled. (Have I ever mentioned how much I hate insurance companies?  I feel an "Ode To Insurance Companies" coming on.....)

If it has not been authorized, I have to call my endocrinologist and find out what's up.  (I think I'm going to write a new version of old McDonald Had a Farm...."And on that farm here had an endocrinologist....with an ologist here, and an ologist there, here an ologist, there an ologist, everywhere an ologist..."  Song of my life!)

I have to call my shrink to reschedule my med-check appointment because Doug has a work thing that came up.  At least this is a "scheduled" re-schedule, as opposed to the "oh-crap-I-can't-see-to-drive" reschedule, or the "on-crap-I-can't-breathe" reschedule, or the "oh-crap-I-can't-get-out-of-bed" reschedule.

I have to call a new ENT to make an appointment to be brutalized have the rest of the granulomas from my trach removed. There's just something SO WRONG about having to call a doctor to make an appointment that you KNOW will cause you unutterable pain....I mean, really, it's bad enough I have to go do it, but to have to make the call?  That's just wrong on so many levels!

I have to call the pain clinic my dear MG friend told me about so I can get some relief from this never ending hip and all over fibro pain (yeah, these people actually recognize fibromyalgia exists!! Go figure!) and start the lengthy application process (their "paperwork" for new patients is 27 pages....I downloaded and printed it so I can get started now!)

I have to remember to get referrals to the above ENT and pain clinic when I go to my PCP this afternoon and make THEM give me something for pain until I can get established in this other program.

Then I have to make the budget for February, balance the checkbook, I don't think my floor has been vacuumed for 2 weeks...ewwww I know. Haven't been able to but can't stand it anymore.

My house is filthy, my office is a wreck, and then there's the tiny subject of raising and educating a 5 1/2 year old and taking care of 3 dogs, all whilst needing to be ready to leave the house at 3 for my 3:15 appointment.

This, my friends, is not unusual for people with chronic illness. This is not JUST MY life.

The phone calls, insurance nightmares, medication screw up, refills, (trying to keep track of all that is a nightmare in and of itself!)  And then there's regular Life stuff...not to mention trying to have a little fun, keep up my spiritual walk, keep up relationships with the few friends I have left....

So next time you feel busy because you have to take Johnny to soccer practice before you go to the grocery store and pick up the dry cleaning?  Be thankful you CAN take Johnny to soccer practice, and go to the grocery store by yourself whenever you want to, and pick up the dry cleaning....

Just sayin'. 

Saturday, January 21, 2012


Okay. So I'm still alive.  Made it through one week of medicinal hell.  Today, which is Saturday, after my second pheresis treatment....and I'm pretty tuckered out.  This morning when I finally got out of bed (at 9:45), I asked my hubby if he had seen the number of the bus that ran over me so I could file a complaint.  I get up and think I can do something "quick a minute" and I'm reminded of how exhausted I am.  Now I just have to make it though next week.

Monday I have an appointment to discuss my fibro pain and management thereof.  I better not get the run-around because I am SO not in the mood.  I am sick of being in pain and someone needs to do something about it. I don't care what I have to sign...I need something so I'm not in pain all the dang time!  I'm sick of being grumpy, and pain makes me GRUMPY!!!

Anyway.  Then Tuesday is the dentist...drilling and rebuilding.  Ug.  Only remotely good thing is the happy gas, but they don't crank it high enough.  I think I'm going to take my headphones this time too.  The sound of that drill makes me CRAZY.  I literally get so tense I dig my nails into my hands and leave marks.  Then I'm sore for three days afterward from being so tense for an hour.

Then Wednesday back for my last pheresis treatment of this series.  They have been going PERFECTLY so I'm not even dreading it!  I'm hoping to have Judy and Emily again; Emily is a "newbie" to pheresis, but she has had YEARS of experience sticking people as she has been doing blood drives forever.  And before that she was a medic in the she passed with flying colors for her first stabbing placing of the needles before the running of the pheresis machine.  Which I'm sure has a technical name, and I'm also sure I don't know the name of it.

Anywho.  Then after the pheresis I have an appointment with my pulmonologist.  Bye bye phentermine, which has been supposedly controlling my appetite and helping me lose the 17 pounds I have (over FIVE FLIPPIN' MONTHS)...Haven't been able to start on the vent at night yet because of the coughing....had a chest x-ray that we will go over, so hopefully that will explain the cough.

Then Thursday at 3:15 (after watching Jacob again all day, the day after a looooong medical day including pheresis) I have to have a bone density scan.  And Friday....I get to rest.  Maybe.  I still have Jacob.

I also still have to call the ENT to make the appointment to have the rest of the granulomas burned out....but I'm not even CALLING until my stoma is healed from the first round in the ER.  So welcome to the life of a chronically ill person.  Not. Much. Fun.

Now I'm exhausted so I'm going to lay down.

Thursday, January 19, 2012

The Week From The Pit


So Sunday was okay.  It was mostly fun.  Just really, really, busy.  Went with my mom and dad to get them a new computer and therefore assisted them in joining the 21st century! Whoo-Hoo!!!  Then it was hooking it up, (Thank you Doug) and downloading and uploading and sideloading (hey, don't want to leave anyone out)...

Then lessons.  Oh, and lunch in between at Steak and Shake, which Jacob loves, everyone else likes, and by everyone, I mean EVERYONE.  Oh my gravy.  There were SO many people there.  Screaming kids, whiny adults, weak and hungry normal people (that would be us).  Well, kids eat free on weekends.  Ah.  Note to self:  being in a room with that many people, unruly children (and therefore redundantly, germs), ridiculously inept parents and a bunch of hungry people is NOT worth a free, otherwise overpriced, grilled cheese and juice box.

So we move on to Monday.  Just felt like crap.  It's time for pheresis, and the day before just knocked me out.  Very long day.  Very long.

Tuesday AM started out better.  Started.  Until I clean my trach.  It had been hurting for a couple of days, and sometimes it's just an irritation that goes away, and other times it means I have to change trachs. (I have 2).  Sometimes just taking the one I have in out, washing it and putting it back in does the trick.  (I always get two of the same exact thing, but one is always more comfortable.  Don't ask.  I don't know).

So I take this one out, and put it the other one, and all h$ll breaks loose.  Or, specifically, a gigantic granuloma breaks lose.  So what is a granuloma?  "A granuloma is a benign growth that results from irritation or trauma."

So.  I have several granulomas around my trach, and they will never completely go away.  Why?

"Simply removing the granuloma surgically without correcting the irritation that caused it will result in regrowth in the overwhelming majority of cases. In fact, treating the underlying irritation properly generally makes surgery unnecessary, as the granuloma will recede by itself." 

And since my trach is the underlying problem of the irritation, and I have to breathe.....well, you get the picture.       

So Tuesday a part of a giant granuloma broke loose from its base, and decided to occlude about 1/3 of my airway.  Now, when you already have about 60% lung function on your best day, a 33% occlusion of your only airway is NOT a good thing.  I tried to stay calm, as freaking out would only make breathing more difficult.  I immediately jumped on facebook and asked for prayer, because I KNEW I could not do this alone.

I ended up going to the ER at Metro, because neither Allegan nor St. Mary's in Grand Rapids have an in-house ENT.  I don't have a babysitter, so my sister (THANK YOU THANK YOU THANK YOU) went to my parents house to watch Jacob (I didn't even know at the time they had a dr. appt.)  So we head north, 45 minutes to my folks', and head to Metro.  I have to say, they are efficient!  I was being brought to a room before Doug even got in from parking the car!  There were NO other patients waiting, which is why...)

So the ENT comes down, and after much debate, I take the trach out, and she starts burning off the offending part of the granuloma with silver nitrate.  Anyone who tells you that granuloma tissue has no feeling, or that silver nitrate doesn't hurt, LIES.

I have used silver nitrate before on the outside of my stoma (the whole in my neck) but NEVER on the INSIDE.  Good Lord in Heaven, now I know why.  So here I lay, on this gurney, half sitting up because I can't lay flat, and this woman is burning flesh out of my only breathing source.  No anesthesia, no numbing anything, no painkillers.  Just Git-r-done.

THEN I had to shove my trach back into this pain filled burned and bleeding cavity while 17 people and their brothers watch. And I had no mirror. It's very difficult to override your brain, (which is made to alert you to AVOID pain) and cause yourself pain on purpose.

It's like those old cartoons with the angel/devil on the shoulders:
Brain: NO!!  Stop!  This hurts!  No pain!  That's what I'm telling you!!
Hand:  Shove it in, you need to breathe!
Brain:  No!  I won't let you!
Hand:  I will be victorious {insert evil laugh, cuz I can't right now}

Anyway, you get the idea.  Finally get it in, and the first thing I say is "PAIN!"  Then comes the morphine, and I forgive everyone in the room.  Even my brain and hand.

So the beautiful thing about silver nitrate is that is keeps working.  So today, I still feel the effects of the silver (even though they "neutralized it" with saline...)  mmm-hm.  My stoma feels like someone took a hot curling iron and decided to try to "insert here." OUCH. Now I have to make an appointment with an ENT to have the rest of the granulomas surgically removed. Oh joy, and happiness!

But I can breathe.  So.  It is what it is. (However, the next time I hear someone complain about something compeltely insignificant or just plain stupid like a bad hair day, ya better duck...just sayin'.)

Then comes Wednesday:  Up at 5:20 AM to go to get tortured plasmapheresis.  I have to say, it couldn't have gone smoother, thank you Jesus!!  THEN we got room service for lunch (that was cool) and mine was free! (Well, we all know what free means) and then it was off to the endocrinologist.

From that appointment:  My blood sugar is perfect, don't change a thing. (yay!)  Who is my fibromyalgia doc?  Don't have one.  No one takes it seriously.  So we're working on that...  I asked her about who to see about chronic pain.  She said call your doc and tell him you want to talk about a "pain contract."  That means that I sign something that says they'll give me painkillers if I agree to not sell them or snort them or try to get more from another doc, etc.  
I was like, "Oh, just like the thing I have to sign when I get my allergy medicine that says I won't make meth."

Like if I was some creepy criminally minded drug addict and meth head my signature would be more important to me than my habit. Whatever.  Just another ludicrous example of the society we live in.

So yeah.  Today it's just me and Jacob and three dogs, and I feel like death warmed over from pheresis, and the burning, bleeding trach adds a nice touch as well.

But I'm here.  Tomorrow is day 2 of pheresis, then Tuesday I have to have a tooth rebuilt, and Wednedsay, back to the hospital for pheresis and an appt. with my pulmonologist.

I LOVE being me!!! : )
Thanks for hanging in reading this...I know it was quite long, but as you can see, I haven't had much time to post.

Monday, January 16, 2012


Okay, a friend of mine alerted me to this....this....complete and total lack of humanity and unfortunately, a trend I see coming down the pike.

Please go to this link and read the story.

This is a REAL family with a daughter who needs a kidney transplant.  However, she was told by the Nephrology department at the Children's Hospital in Philadelphia that her precious baby girl was, and I quote, "She is not eligible because of her quality of life---Because of her mental delays."

WHAT?  I hope and pray that every single human being who reads this is as outraged and sickened by this as I am.

Do we still live in AMERICA???  Oh. My. Flippin". WORD!!!!

Are you KIDDING ME????

Even though her family would donate the kidney so that she doesn't have to take a space on the transplant list (reserved for someone perfect, apparently).....  The hospital WILL NOT DO IT.

What's next?  You can't go on the transplant list because you're not a college graduate?  You don't make enough money?  You have a felony on your criminal record?  You have BLUE YES???

This is an outrage beyond anything I've ever seen.  This child is THREE years old.  She COULD have the rest of her life ahead of her...but PROTOCOL is stopping her from having a life saving transplant.

Thank you, Obamacare.  I am so angry I could just spit.  Don't for one minute think that this couldn't happen to YOU or YOUR child.  Because it can and it will.  IF we don't stop it.

First, you can sign this petition to show your support for the family, and your disdain for the hospital.

Secondly, here is a link to the governor's office:  click here and fill out the form to send him an e-mail.  His name is Tom Corbett, and wanna know what his "platform" is??  "Children first."  Mmm-hm.  I swear.  The phone number to the governor's office is Phone: (717) 787-2500.

Third, you could write a letter to the Secretary of Health (or call the number above), Eli Avila at
Governor's Office
225 Main Capitol Building
Harrisburg, Pennsylvania 17120
Phone: (717) 787-2500
Fax: (717) 772-8284

Let's FLOOD the office with calls and emails.  This little girl has a right to medical treatment.  I mean, QUALITY OF LIFE???  What about all the sociopath serial killer rapists on death row?  THEY could get a transplant, and on OUR dime!!  I hope you are as upset about this as I am.  Politics aside, right is right.  And this is NOT right.

PLEASE do SOMETHING on this child's behalf.  Thanks.

Full Statement from The Children’s Hospital of Philadelphia:

To our Facebook community:

We hear you.

We feel and understand your frustration, but we are unable to comment publicly on individual cases.

Each child is unique, and our goal is always to provide the best possible medical care for each individual patient.

Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family.

Anything less would be completely inconsistent with the values we work to uphold every day.

We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.

The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.

The Children’s Hospital of Philadelphia is an institution. But more important, we are a team of men and women whose life’s work and greatest passion are the care of all sick children and the support of their families. To be entrusted with the care of these children is a privilege, one we take with the utmost seriousness."
This information was passed on to me, but I still believe Amelia's mother....I guess time will tell whether or not Little Amelia gets her new kidney! 


Bad MG day today.  Feel like lukewarm oatmeal.  Can't keep my eyes open.  Need my O2 this morning.  SO tired. 

Having plasmapheresis Wednesday and Friday this week, then next Wednesday too.  I've gone almost 2 months on 2 treatments....that's AWESOME.

Have to go rest now.

Love to all.

Saturday, January 14, 2012

My New youtube Video

Please watch.....I don't know how to get it on my blog!  It's just me, telling my story in kind of a different way.

Friday, January 13, 2012

Prescription Nightmares

This is a Sponsored post written by me on behalf of Walgreens for SocialSpark. All opinions are 100% mine.

It's amazing to me how much of a pain it is to get prescriptions filled.  There are many different pharmacies, of course, and we all have our preference.  Sometimes, however, that choice is taken away, and we are told what to do.

For example, my husband's insurance company uses Express Scripts.  Now, I suppose I don't HAVE to, but some of the medications I take are considered "specialty drugs" and  aren't available at every pharmacy.  Express Scripts, if you are not familiar with them, is a mail order pharmacy.  It is also a huge corporation that manages prescription benefits for several other places. 

Express Scripts has used Walgreens in the past as part of their pharmacy provider network.  Well, as of January 1, 2012, that is no more.  Walgreens is the only 24 hour pharmacy that I know of, and it has locations everywhere.  For someone with a lot of medications, having to switch pharmacies, and worse yet,pharmacists, is a nightmare.  Walgreens has done everything possible to keep working with Express Scripts so that their customers are not interrupted in any way from receiving their prescriptions. 

In light of this change, you can join the Prescription Savings Club at Walgreens If you sign up before January 31, you can save $15.00!  I would definitely check it out.  Walgreens is offering this, again, to do whatever they can for their customers.

You can follow Walgreens on Twitter and "like" Walgreens on Facebook this way you can keep informed about the situation, and see all the great deals and savings that Walgreens always has.

One of the worst parts of this whole thing is that many, many people are being inconvenienced, including our military.  Over 250,000 U.S. military personnel and their families, as well as retired military personnel use Tricare pharmacy benefits.    Express Scripts is the pharmacy benefit manager of Tricare, and so our military will lose the ability to use Walgreens (everywhere, and open 24 hours a day!) because of Express Scripts.  Walgreens has tried to negotiate with Express Scripts to at least separate the Tricare account from the rest to keep the military personnel from being put out. Walgreens and Express Scripts cannot work it out because Express Scripts will not agree to negotiate.

If you feel as upset about this as I do, I urge you to contact media persons, or write a letter to the editor of your newspapers.

We all know how difficult it is to manage several prescriptions.  We don't need the hassle of having a mega-corporation like Express Scripts messing everything up.

Visit Sponsor's Site


Hey all.

I have not been in a good place the last several days.  Weeks, maybe?  Months?  Ever since the coughing-up-of-the-blood for a month, and pneumonia, all while trying to maintain my sanity while raising a very inquisitive, extremely bright, crazy active, exuberant-ALL-boy only child who thinks Mommy has nothing better to do than be his playmate.... 

I'm trying so hard to stay "upbeat."  I mean, I'm not trying to be fake... {please, those of you who know me know I don't do fake...not in my genetic code}.  I'm just trying really, really hard to count my blessings and stay focused on all the good things in my life. 

Can I just tell you what a challenge it's been?  UN-real. The only way that I could even BEGIN to manage everything I do is if I give up everything that I LOVE that doesn't necessarily impact Doug and my jewelry.  And my writing.  And my blog.  And facebook.  My social networking ability is my LIFELINE.  Literally.  There have been times when I have been "this close" to just throwing in the towel.  And it wasn't my husband or family that brought me out of the pit.  It was my friends on facebook and friends from my blog... people with whom I have bonded MORE than family. 

And I WILL. NOT. GIVE. THAT. UP.  I won't.

So I have to just soldier on and suck it up.  Not a perfect way to live, to be sure....but it's the only way I know how to survive right now.  Yup.  Definitely in survival mode. Just. Keep. Moving.

If I didn't think I'd have a breakdown, I'd beg to be committed! (Yeah, think on that one for a while...)

Tuesday, January 10, 2012

Beads, Beads, Beads!

Holy crow.  Yesterday I had the bright idea to sort through all my stuff and re-organize it in a more user-friendly way.  HA!  What a MESS!!!  Joanna and I went out the other day and got some new things...not a TON, but we picked through a big ol' mess of beads for a good hour... I completely zoned out, so poor Joanna was starving to death by the time I finished...but anyway. 

So I haul everything to the dining room table and start sorting.  First of all, I remove all the plastic beads.  I just don't use them.  I look back to the very first few things I made and I'm like OH MY GOSH no way.  Hideous.  My husbands Auntie Jean ordered a bracelet from me at the very beginning of this endeavor.  She needed a new clasp on it because I bought some magnet closures that didn't stay closed very well (live and learn!)

When I got it in the mail I just couldn't believe someone actually paid for that.  So I completely redid it.  I could NOT send that back to her! So I replaced all the plastic beads with glass and crystals and sent it back... I think she liked the newer version!

I really can't believe how much fun it is to make jewelry.  I'm also not sure why it took me so long to get into this....I LOVE jewelry.  Always have.  I had to wait til I was 12 to get my ears pierced and I nearly DIED! And I always liked the real stuff.  Yup.  I've ALWAYS been high maintenance!  : )

Anyway.  So I got probably 80% of it done, but the 20% on the table is still a hot mess, so I need to go put the rest where it belongs....

And yes, Joanna, I see beads when I close my eyes.....even when I simply blink. Ug.

Sunday, January 8, 2012

Sorry I've Been MIA

Man, I HATE it when JUNK invades my life.  I mean personal, icky junk.  It just wrecks everything.  But, I've spoken my piece, shared my heart, got a little crazy, and now it's time to go on.

So.  Yesterday I spent the day running errands and going out for lunch with Joanna...good heavens she is a patient woman.  We went to the bead store downtown Allegan (3D Beads)....I was JUST going to show Doreen where I got some magnets from, but ended up being there for probably 45 minutes.  I just HAD to look!  They rearranged the shop so it was nice and roomy and they had new sparkly stuff I just HAD to check out.  Doreen (the owner)  also convinced me to take a class with a lady I'm going to!  Learn how to do wire wrapping.

Then we went to the Calico Rabbit in Plainwell.  I keep calling it the Calico Kitten, because, hey, isn't that what YOU think of when you say "Calico?" Mmmm-hm. Me too.  Anyway.  I basically only go to one booth there, the bead lady booth.  Well she had an ENTIRE BUCKET of individual beads for three cents each.  Mmm-hm.  I did.  I went through the whole. stinkin. basket. up at the counter, and Joanna patiently helped me dig through and look through them all for the ones I wanted.  Pretty soon the young lady at the counter was diggin' too!

As far as support goes, that's right up there with holding your hair back if you're puking, if you ask me.  All of the sudden I look up and it's 2:20 PM, and we haven't had lunch yet!  I was MORTIFIED!  I was like, OH my GOSH you must be STARVING!!  I was so zoned out I hadn't noticed....but as soon as I zoned back IN....sheesh!  I was ready to mow the bark off the twiggy tree outside!

Anywho.  Got more beads...which I need like a hole in the head....but also come other stuff to make some newer, different things.  SO.  If you want to, go check me out on facebook.  Go to  and check it out.  You have til midnight tomorrow to save 30% on orders of $30.00 or more.

But anyway.  Thanks for your patience over the last few weeks....I haven't been blogging like I want to, but I've had so much personal gar-baj going on that I couldn't focus.  So I'm working on that.

Hope everyone is doing well!

Thursday, January 5, 2012

Swimming Upstream

That's me.  Swimming upstream.  Going against the flow.  Fighting my way through.  It gets SO. OLD.  But I can't stop....not when I know what I'm doing is right.  So it puts me in the grave early...what else is there to do?  Compromise what I believe because no one has my back?  I know I'm being a bit ambiguous, and I'm sorry for that.....there's just a situation that I can't really COMPLETELY discuss because if the wrong person reads it, my life will only get MORE difficult.

Anyway.  It just seems like everything is a fight.  Trying to raise my child the right way.

Homeschooling.  I'm "this" close to sending Jacob to school, but I just CAN'T.  Not just the germs (if I didn't have the trach I MIGHT consider a charter school) but I'll just get sick and it will be crappier than it is now. I am just getting over pneumonia from a cold Jacob picked up and gave to me.  He's so smart....he would be bored out of his mind.  But it's just not healthy to be around your child 24/7/365.  Maybe I'm just selfish.

Isolation.  Feeling alone in every way.  Emotionally.  Physcially, for sure.  Mentally.  Spiritually.  Parenting.  Discipline. It's tough right now, let me tell ya.  Add running a business and chronic illness....and welcome to my life.

I know other people have it much worse.  MUCH worse.  There are a few people in some of my MG groups online who are MUCH sicker than I am, and have other horrifying personal things going on.  I know that I have to keep my chin up.  But lately it seems like every time I try to stick that chin up, I just get a swift right uppercut. 

{Sigh.}  Jesus told us that in this life we would have trouble.  I just didn't know it would be so painful.

And that's another "upper" post from me...sorry...just gets old having to always think of someone worse off than you to make you feel better.

Wednesday, January 4, 2012

They Say It's My Birthday....

So yeah.  Happy Birthday to me.  For whatever reason, 40 was not a big deal.  Today, 41 seems like 152.  I'm now "in my forties."  In my brain "forties" is old.  If I had cats I could be the crazy old cat lady.  But I'm allergic.  Trying to stay upbeat, but I didn't sleep well last night, so I don't feel the best, and I have a huge blister on my finger from digging up dinosaur bones that Jacob got for his birthday.

Note to self:  When you see another "excavation" project involving digging fake dinosaur bones out of a huge slab of plaster and think that Jacob would love it, just remember your birthday of 2012.  And the pain in your arms, hands, wrists and fingers.  And the blisters. And Just. Say. No.

Very sweetly, however, Doug and Jacob make me a snowman cake for my birthday.  They made it last night and gave me my gift and cards last night.  Jacob picked out a necklace at my favorite bead store downtown.... It's a mother and child necklace...I have ALWAYS wanted one.  And they got it the Saturday after Thanksgiving and have had it the whole time. 

And Jacob picked out his own birthday card for me:  It has a fish with big googly eyes on the front, which is why he picked it.  However, it said, "Either you're getting older..." (then you open it up) "Or you're spending WAY too much time in the water."  Nice.

Anyway.  Here's the cake.
My very first ever snowman cake.  I love snowmen.

My precious boy.  And the cake he was SO proud of. (It was HIS idea.)

Monday, January 2, 2012

Holy Snow Batman!

We knew it was coming eventually!

Outside my front window

Yes, Virginia, It DOES snow sideways!

Jacob is in little boy heaven.  He LOVES the snow!

Even the dogs were running around like crazy fools!
There is a phenomenon where we live called "lake effect" snow.  Basically, when really, really cold air comes either down from the north or from the west it crosses one of the Great Lakes.  The water of the lake is warmer than the air, and this creates what they call lake effect snow.

Basically, what that means is that when it's super cold and windy, and the wind is from the north or west, we get a boatload of snow.  (See above).  And MY house happens to sit at the end of a "snow belt."  If you saw it on a weather map, it would look like a finger reaching across from the lake to directly over MY house.  We live south and west of town, closer to the lake.  So WE can get a foot, and Doug's work, in the city (town), can get 4 inches.

Yes, I'm serious.

So I am going NOWHERE for days.  It's SO cold.  Windchill is probably at zero or below.  I was supposed to go to the dentist today, but this frigid air going straight to my lungs?  No thanks.  Especially after just getting over pneumonia.

So.  What's it like in your neck of the woods??

Sunday, January 1, 2012

Happy New Year!

Happy New Year!  Here's to 2012:  May you laugh more than you hurt, love more than you hate, be happy more than you're sad, and be healthy WAY more than you're sick.

God Bless You, and I am so thankful for each and every one of you!