Living with Chronic Illness

Online Christmas Shopping

2012-02-01T15:17:00.000-08:00

Contributed by Milford Woods

This was the most stress-free Christmas shopping experience of my life. For several years my mom has been shopping online on Black Friday instead of going out to find great deals. She has been recommending that I do the same. However, I have gone Christmas shopping every Friday after Thanksgiving since I was a little girl, and I have always loved the thrill of getting a great deal. However, now many of the deals are also found online. I listened to my mom’s advice this year and stayed home on the Friday after Thanksgiving to shop online. I am so glad I did. I was able to find some great deals without ever leaving my house. We have our internet through clear wireless internet Wilmington, and I shopped for my husband and my kids while sitting in my house coat. I did not have to deal with the crowds and the traffic, but I still got most of my shopping done. I will never again get up at the crack of dawn to find a deal early Friday morning. I think I have started a new tradition.

This is a sponsored post.

And Ya Wonder Why I'm Stressed

2012-02-01T09:34:00.000-08:00

This goes along with "a day in the life" of a chronically ill patient.

I have been trying to get my CellCept refilled. CellCept and plasmapheresis keep me alive. I'm not being melodramatic; I can assure you that if I stopped taking CellCept (which I did when I had Jacob, and it wasn't pretty), and plasmapheresis I would eventually die. SO. Pretty important that I get my medication.

On December 27, 2011, Express Scripts called my doc to see if he had meant to change the dosage on my CellCept (from 4 pills a day to 2). NO response. I called at the begining of January after I received one bottle of CellCept with the directions of 2 tabs a day, and it was a 2 month supply at that dosage.

I'm supposed to receive 3 months supply, and of course, the right dose would be nice. So I called Dr. Sullivan's office again. Called them 3 days in a row before someone called me back. The office manager called back, and ASSURED me it would be taken care of.

So I get a letter from Express Scripts saying that it's too soon to refill the CellCept. Being the follow-upper that I am, I e-mail Express Scripts to see if I can get the details of the script to make sure it's correct this time. So they get back to me, and it IS for 3 months supply this time....of TWO tablets a day.

{insert screaming, ranting, raving, and pulling of the hair}

So. I called Express Scripts to double-verify it was wrong before I start calling people ripping their heads off. They confirmed it was wrong, and cancelled the prescription completely. So Monday (2 days ago) I called the office manager again and asked her what I had to do to get the correct medication. I asked her fax in the RIGHT order, gave her the fax number, repeated the information twice, and asked her to call me when she had done this.

{chirp chirp chirp}

Yup, that's what I've heard. It's Wednesday now, and I just called Express Scripts to see if the doc had called it in. You guessed it: Nope.

So I'm BACK on the phone to the doc's office, and get a gentleman who told me my doc got a new nurse, and asked me if I would like to give it one more try with HER (to get it done correctly). I said absolutely not, I want to talk to someone in charge. So I got the "supervisor."

Left a message with this supervisor, so we'll see what happens. If they can't get their proverbial poop in a group, I WILL be seeking a new neurologist. (Which I already want to do, but my husband doesn't think I'm being reasonable....I'm belittling and condescending to my docs.) Which I don't agree with, but in situations like this, if I was: Hmm...wonder why???

And this is ONE of my many, many medications. December 27th was 35 days ago. Thirty-five days for one, life-saving medication. Sure am glad I haven't run out of it!

Actions...

2012-01-30T13:48:00.000-08:00

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?

Thankful

2012-01-29T10:44:00.000-08:00

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! https://www.facebook.com/MGKerriJewelry

Yesterday...CT Scan

2012-01-26T10:04:00.000-08:00

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"...no 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 crying....it 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!!!

I Love Baby Hats!

2012-01-25T07:17:00.000-08:00

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

And The Hits Keep Coming

2012-01-24T08:49:00.000-08:00

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 though...so 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.

A Day In The Life

2012-01-23T04:51:00.000-08:00

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'.

Update

2012-01-21T11:09:00.000-08:00

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 military....so 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.

The Week From The Pit

2012-01-19T06:06:00.000-08:00

Okay.

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." www.voicemedicine.com

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." www.voicemedicine.com

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.

OUTRAGE!!!

2012-01-16T12:39:00.000-08:00

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. http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

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.

update
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!

Blech.

2012-01-16T07:51:00.000-08:00

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.

My New youtube Video

2012-01-14T14:25:00.000-08:00

http://youtu.be/Se0febG4Pd0

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.
Thanks.

Prescription Nightmares

2012-01-13T21:02:00.001-08:00

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.

{Sigh}

2012-01-13T14:17:00.000-08:00

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 Jacob....like 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...)

Beads, Beads, Beads!

2012-01-10T06:37:00.000-08:00

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.

Sorry I've Been MIA

2012-01-08T14:09:00.000-08:00

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 there...so 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 https://www.facebook.com/MGKerriJewelry 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!

Swimming Upstream

2012-01-05T08:31:00.000-08:00

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.

They Say It's My Birthday....

2012-01-04T12:45:00.000-08:00

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.)

Holy Snow Batman!

2012-01-02T13:48:00.000-08:00

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??

Happy New Year!

2012-01-01T09:53:00.000-08:00

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!

Looking Forward

2011-12-31T10:46:00.000-08:00

Many years I look back over the year and ponder this or that, wonder what I would have done differently, or bemoan what I did not do.

I decided I've done enough looking back, and this year is all about looking forward.

I'm not making resolutions either. I have 2 very important goals that I WILL achieve: I am going on vacation to North Carolina in April to meet my sistah, separated from birth, Cindy. We will spend a glorious week on the Outer Banks, and then back to her house, then up the east coast to meet another AWESOME MG sister, Rachel. It will be the most wonderful trip.

My other goal is to get my book published. I have to finish writing it (I have about 175 pages right now, but it's kind of all over the place), then have it proofed, edit it, and publish it. It WILL get done.

Other than that, I'm going to enjoy my family. I'm going to teach my son. I'm going to live every good day to the fullest, and try to learn something from the not so good ones.

I'm going to cherish the people in my life, and help as many people as possible. I will inspire and be inspired. I will teach and be taught. I will love and be loved.

So here is to 2012: may it bring us all a little closer to each other, a lot closer to the God of Creation, and more benevolent than ever before.

Thank you for sharing my journey with me in 2011; one thing I can promise about 2012 and me: It won't be boring! God Bless!

Mom and Dad

2011-12-31T10:36:00.000-08:00

Content by Sol Rosales

Mom and dad are really stubborn and I hate to say that because I love them so much. But they’re all about being low-tech which is fine except that they hate to talk on the phone so I’m never able to get in touch with them. I told them if this is how they were going to be about the phone they’d at least have to learn to email so I’ve set them up with Internet Providers and been working on what I can do to keep them in the loop. I actually had to move back home a couple of years ago when I lost my job and I was amazed at how they’ve totally shunned technology. They don’t even have a microwave in the kitchen – I mean, really, who doesn’t have a microwave! Anyway, I love my parents to death but at the end of the day they need to get with it or we’re going to have to get more involved. They like their privacy so I know they would hate that!

This is a sponsored post. It's also appropriate because I'm in the process of getting my parents internet!

Christmas Pics

2011-12-30T09:08:00.000-08:00

Jacob got them all: soccer ball, kickball, volleyball, football, basketball

"Mom, take the darn picture."

"Oh the humanity."

Probably Jacob's favorite gift: a hoppy horse

Opening presents at Grandma's

"I AM smiling!"

Erector sets. Boyhood at its finest. Oh, Jacob liked them too.

Ta-da! The finished product

More Random Letters

2011-12-29T17:46:00.000-08:00

Dear Lady Cashier at Rite Aid,

When I present you with a coupon for an item I am purchasing, please just take care of it. The coupon was for a FREE product. You do not need to ask WHY I get it free. I have a coupon, and it says FREE. What part do we not understand??

Sincerely,
A Bit Taken Aback at Your Rudeness

Dear Comcast Cable Website,

If you aren't able to do what your website says you can do, don't put it on your website!
I mean, really. If YOU send ME a letter asking me if I want to finish my transaction, and I go to your website, I expect to be able to finish my transaction. I do NOT expect you to take the offer off the table and change all the prices. Something that should have been very simple took many hours, many phone calls, and much irritation on my part.

Sincerely,
Very Glad I'M Not Your Customer

Dear Husband,

Please stop telling our child to do ridiculous things like stick carrots up his nose to soften them. He actually listens to you, believe it or not. Oh, and while we're at it, PLEASE stop undoing the hours and hours I spend disciplining our child by laughing at his inappropriate comments, and giving into him when he begs and whines after I'VE said "no" 17 times.

Thanks honey. Love ya.

Dear Self,

You REALLY need to stop saying "dammit." It doesn't sound nearly as charming coming out of your 5 year old's mouth.

Sincerely,
Oops

What's Going On

2011-12-27T15:39:00.000-08:00

Hey everyone...

Wow. What a busy couple of weeks! Add to that dealing with pneumonia for crying out loud. I did a LITTLE better at restraining myself this year and saying "no" when I knew I had already done too much...but that's something I still need to get MUCH better at.

It's very difficult being a Type A personality with a disease that allows you to be anything BUT Type A. Sometimes even a Type B is a stretch.

I am not laid back.
I am not mellow.
I am not calm.
I am not a "go-with-the-flow" kind of girl.

I am a thinker, a planner, a scheduler, and I HATE change. I am high maintenance!! Yeah, I know, I'm laughing too!

If there's one thing I know in my life, it's that every day will bring something different. I can do all the planning in the world, but that doesn't mean any of it's going to happen. And it drives. me. crazy.

But ya know what? NONE of us is promised tomorrow. The healthiest among us could be hit by a crosstown bus tomorrow. (yes, I'm being a bit tongue-in-cheek, because I'm trying not to be morbid).

But seriously. Just in the last 2 weeks, I personally know of 4 young, healthy people who have died suddenly. Two were a brother and sister, 17 and 13. All four had their whole lives ahead of them. I guess what I'm trying to say is that we all need to live in the moment.

I'm not saying don't be responsible or make long-range goals or plans, but I AM saying don't COUNT on them to fulfill you or make you happy. You have to be okay with who you are today, because today may be all you have.

I don't know that I'm completely "okay" with me yet, today, in this moment. But I'm learning. Slowly, but I'm learning. Cherish everyone in your life. Don't wait to tell them you love them. If you want something, go for it. Don't put it off until tomorrow. Carpe diem!! Seize the day!

Merry Christmas!

2011-12-25T05:42:00.000-08:00

"The people who walked in darkness
   Have seen a great light;
   Those who dwelt in the land of the shadow of death,
   Upon them a light has shined.

You have multiplied the nation

And increased its joy;
They rejoice before You

According to the joy of harvest,

As men rejoice when they divide the spoil.

For You have broken the yoke of his burden

And the staff of his shoulder...

For every warrior’s sandal from the noisy battle,

And garments rolled in blood,

Will be used for burning and fuel of fire.

For unto us a Child is born,

Unto us a Son is given;

And the government will be upon His shoulder.

And His name will be called

Wonderful, Counselor, Mighty God,

Everlasting Father, Prince of Peace.

Of the increase of His government and peace

There will be no end,
Upon the throne of David and over His kingdom,
To order it and establish it with judgment and justice
From that time forward, even forever.
The zeal of the Lord of hosts will perform this."

Isaiah 9:2-6

Praying that today we will all stop for a moment among the gifts, the food, the family and fun, to remember that this is the day a tiny baby came into the world not to judge it, but to save it.

God Bless You All,

And Merry Christmas!

And The Winner Is...

2011-12-24T23:00:00.000-08:00

Hey everyone! Sorry I'm a little late on this...today was chaotic around here....

But, without further ado, using Random Number Generator (see side bar) the winner is.....

Jo-Ann Markie!!!!

Congratulations Jo-Ann!! Merry Christmas!!

Writer's Workshop

2011-12-22T10:42:00.000-08:00

Time to hook up with MamaKat and her pretty much world famous writer's workshop. This week I chose the prompt "You know you're a mother when...."

10. You can't walk through a room without stepping on a plastic soldier, animal, or bendaroo.

9.    You do the lick-your-thumb-and-wipe-your-child's-mouth thing that your mom did to you and you SWORE you'd never do to YOUR children.

8.   Your heart can melt and break at the same time.

7.    You know that silence means TROUBLE.

6.    You give up pretty much all normal existence to live out in the middle of BFE so your son can have room to run with his dogs, cows to grow for meat, ducks to watch waddle, chickens to lay eggs, a bunny to, well, have a bunny, a pond for tadpole catching, and acres and acres to explore.

5.    One little human being can overpower you with a look, a smile, or a tear.

4.    You get up in the middle of the night because out of the 1,342 stuffed animals your child has, he can't sleep without the ONE that's been missing for 3 months.

3.    Your favorite words are "Mommy, can I cuddle?"

2.    You can't even remember what your life was like before you had your son.

1.    And THE number one reason you know you're a mother is when you would rather catch puke in your hands than clean it off the floor, bedding, and/or your child.


www.mamakatslosinit.com

Pneumonia

2011-12-20T18:50:00.000-08:00

Okay. Guess what I got for Christmas?
Yup. Pneumonia. Might be lying low for a few days.
Don't forget to enter the drawing from my 800th post!
I'll be back.
Merry Christmas!

WOW!! 800th post. GIVEAWAY

2011-12-19T09:56:00.000-08:00

Wow! I can hardly believe it. This is my 800th post. Eight hundred! I started blogging in September of 2008. So just over 3 years, and 800 posts. Crazy!!! This blog has been my saving grace at times. I try to make you laugh, I try to help you understand chronic illness, and sometimes I just use it for therapy. That's why I started it. At the encouragement of my friend Joanna, I started this blog. So whether you love it or hate it, you have her to thank. She really, really encouraged me to start blogging. At first I was like, "meh, I can't do that. YOU'RE the funny one.....what would I write about?"

And the rest, as they say, is history. SO. To celebrate, I'm having a giveaway!!!

So first, and this is a book I reviewed earlier on this blog, so you can check that out if you want, is the book

"Take Me Home From The Oscars...Arthritis, Television and Me" by Christine Schwab.


photo courtesy of Amazon.com

The second thing is this Sterling Silver Key necklace with a pearl in the center of the key, and rhinestones on the end. It's really beautiful. So all you have to do is leave a comment. Very simple and straightforward. You don't have to follow me (unless you want to) or tell me what you love about me (although....well, nevermind), or jump through hoops. Just leave a comment to enter the giveaway.

I am so excited to have reached 800 posts. But even more than that, I never could have IMAGINED the friendships that this blog has blessed me with. THANK YOU so much for sharing in my journey. THANK YOU for reading. THANK YOU for caring. Good luck!!

I forgot to add the giveaway ends Friday, December 23. I will be drawing the winner on Saturday, December 24!

Nomorerack

2011-12-17T12:12:00.000-08:00

I have not posted about this before, which is kind of ironic, because I buy things from nomorerack.com all the time. In fact, I just got a package yesterday from them!

Basically, nomorerack.com is a website that has AMAZING deals. They offer 8 new deals every single day. Usually one of them is free. You pay $2.00 shipping per item that you purchase from them. Once in a while they even offer free shipping on the free item. It’s fantastic! They also feature a charity item, where part or all of the proceeds go to a specific charity.

I just ordered a pair of earrings this week that were 100% free. I ended up ordering a necklace as well, because it was sterling silver and gorgeous and very reasonably priced. I think it was 80% off manufacturer’s suggested retail price.

I did not see any news about a scam, but apparently some people are saying that the nomorerack website was hacked and people were filing complaints. There is not a nomorerack scam. I can completely vouch that it is a legitimate business, because I have ordered several things from them!

Every day I wait for noon to arrive; the items they have are available from noon one day until noon the next. Because of my health, I don’t have very good balance and have to wear totally flat shoes. But I am telling you…there are shoes on there that I would LOVE to have. They are totally stylish and current. They have a little bit of everything. Toys, clothes, handbags, perfume; there is truly something for everyone.

You can check nomorerack reviews , but the BEST way to check them out is to go to their website yourself. As I said, I have purchased several things from them, and have been very happy with what I received. Sometimes the items ship right away, other times they ship from their global warehouse, so it can take 3 or 4 weeks. However, when you pay $3.00 for an item normally priced at $45.00, you can wait the 3 weeks with no problem.

Another awesome feature of nomorerack is that they have Friend Deals. You tell your friends about the amazing deals on nomorerack, and you get stuff FREE if they check it out. So what are you waiting for? Go check it out!

This is a sponsored post.

Five Minute Friday

2011-12-16T05:50:00.000-08:00

So today I'm linking up with the gypsy mama for Five Minute Friday. Five minutes, just writing, no editing. Today's prompt is: CONNECTED.

START:

I need to be connected. It's not a want, a desire, a "wish." It's a "have to." I HAVE to be connected. To people. To God. To my family. To my husband and son. I am a person who needs connection. I'm like a plug....have to have an outlet to make me complete. No power without connection.

I haven't done such a great job of this lately. I've been so caught up in the busy-ness of the season; making cookies, wrapping presents, buying presents, wrapping presents, etc. Sending packages. Mailing cards. But I haven't taken the time to really connect with my friends, my family, or my God. I get so busy trying to do, do, do, that I don't.

I hate feeling disconnected and alone. I hate feeling that that other part of me is missing. Because of where I live, and my health, I'm in my house a lot. A LOT. And I hate it. I can't work. I can't just pick up and go. I can't just run errands at the drop of a hat. Everything takes planning and effort. I don't have a sense of community. Of connected-ness. And I hate it.

I'm so thankful for technology. For my computer, my phone....they help me connect in a very real way. I get to talk to people like me, with MG, who help me and encourage me. They are my friends. They are my connection.

Unfortunately, living vicariously is no substitute for the real thing: a visit from a friend. A hug. A real, flesh-and-blood, I'm-so-glad-to-see-you, I-love-you-and-am-thrilled-you-are-in-my-life, life-giving hug.

Sigh.

STOP.

One Of Those Days

2011-12-14T13:09:00.000-08:00

It is one of those days. Because it was one of those nights.

Ug. Jacob had a nap, because I had to have a nap. So he was up late. I mean late, late. Then Doug gets crabby because he likes to go to bed at the same time as I do. Well, I think we are the only family in America that all go to bed at the same time.

Then, because Jacob has to have Blackie right up in his face while he sleeps so he can rub Blackie's ear while he sucks his thumb, while he falls asleep. I'm ready to get rid of all three dogs. I'm just SICK of it. Dog hair, mud, they all eat poop in one form or another...the puke all over....I LOVE my dogs, don't get me wrong....but when I'm tired and they have ANYTHING to do with it...I'm just done.

So last night, it's already late, I'm finally settling into bed, getting sleepy, and Jacob comes in screaming. Blackie scratched his cheek. Got him pretty good. He refused to go back into his room unless I put Blackie in his cage. Well THAT wasn't happening as his cage is in the mudroom.

And Doug was sleeping....[at least he better have been].....so Jacob got his sleeping bags and slept on the floor in our room. I was SO irritated that I was wide awake again, and didn't get to sleep til almost 3. Then I was up at 7:30 and couldn't get back to sleep. Yeah. Four and a half hours. Not so much.

So I'm tired, cranky, and tired. Did I mention tired? Ug. So anyway. The good news is that 3 more posts will make 800!!! Calls for some sort of getaway if you ask me....I just have to figure out what...stay tuned!

Beyond Blessed

2011-12-12T10:30:00.000-08:00

Today I am realizing how blessed I am to be part of a group of people called Myasthenics. I have Myasthenia Gravis. It has changed my life forever. Many of the changes I do not like. In fact, many of them I LOATHE. I hate that I cannot work. I hate that I cannot pickup and go wherever, whenever I want to. I hate that I can't roll around on the floor with my child. I hate that I can't grab an overnight bag and spontaneously go somewhere for the night.

But you know what I LOVE? I love that God loves me so much, that He could take a horrific disease and bless my socks off. I have been able to support and encourage a few people along the way. For a person like me who wants to help the entire world, that's a really cool thing!

I have met people that have indelibly changed my life. I wouldn't have met them if I didn't have this disease. (Well, nothing is impossible, but probably not). Some of the people that I love and cherish most on this earth I have never met in person. But they KNOW me. And I KNOW them. And I know that I could call them night or day and they would listen, and understand.

There is a special and immediate bond with people you have something in common with, especially something that is a huge part of your life. For example, I feel an immediate bond with other Christians. So for the people that are Christians AND have MG....well, we are just plain family.

I have changed a lot as a person too. I value so much more. I value so much less....it just depends on how you look at it. The things that used to drive me crazy, raise my blood pressure, make me jump up and down and curse and turn red and lose my mind don't even cross my radar now. And the things that are really IMPORTANT in life....important, not URGENT....they are the things that matter.

My husband.
My son.
My family.
My friends.
My God.

I would challenge you today, ill or not, to think about what your last few weeks have been like, what your next few weeks will be like, and what you're doing that will REALLY matter 5 years from now.