Can Anyone Tell Me What's Wrong?

We last saw our heroine as she was intubated and flown via helicopter to the U of M, half dead.  If you missed that post, you can check it out here: http://sickofmg.blogspot.com/2017/06/ah-june.html

Now, the best thing about the University of Michigan hospital is that they are a teaching hospital.  That means you get the opinions and minds of MANY doctors and medical students pitching in on your case.

The WORST thing about the U of M hospital is that they are a teaching hospital.  That means they switch doctors every calendar month.  When I first got to the hospital, I had *rock star* doctors (or so I'm told... I was heavily sedated for my own safety, and probably the safety of the medical staff around me!). I received 2 rounds of plasmapheresis, so a total of 10 treatments in October.

November hit, and I got new docs.  And they sucked.  They were lazy, narrow-minded, uneducated people who didn't give a rat's ass about their patients, and gave even less thought to solving the patient's problem.  Dr. Andrea Bozoki and Dr. Ming Hong...These are two names you should remember if you ever need a neurologist.  Run far away.  Why? Because they almost killed me.

They stopped doing the pheresis treatments which were definitely helping me and giving me strength back.  They decided I didn't really need it.  They came up with this crackpot diagnosis of "chronic axonal motor neuropathy."  So let's break that down....

Chronic:  Always
Axonal:  adjective form of axon, meaning nerve fiber
Motor: movement
Neuropathy: refers to general diseases or malfunctions of the nerves.

So their diagnoses was something like I always had nerve fibers that malfunctioned when I moved.

{{crickets}}

Dr. Bozoki told my family if I lost 50 pounds I would be fine.  FINE. Not fine!
Dr. Hong told me (while I'm in the hospital, on a vent, trached to get rid of my double MRSA pneumonia) that if I would just accept the fact that all of this was in my head I would get better.

I looked at him, grabbed my notepad and wrote, "You mean I'm CRAZY?"  And he just kind of closed his eyes and nodded his head.   Yes, these were the doctors in charge of my health, my very LIFE...and they thought I was an overweight nutjob.  Instills lots of confidence...

I was discharged just before Thanksgiving with pain pills and quite a high dose of anxiety medication.  Nine days later, (praise God it was December and I'd hopefully not get any WORSE docs than I had in November) I was driven back to the U of M ER when the pills I was trying to swallow were coming back out of my trach.  By the time I got to the hospital, I had almost no muscle control.  By the time I got to a room, at 2 A.M. (after sitting in the ER for 10 hours), my entire face was paralyzed.  I couldn't close my mouth all the way, and I couldn't open it.  I couldn't open one eye and I couldn't close the other.  I couldn't hold my head up.

And I was terrified.  

To be continued....

Invisible

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. I used to wear an eye patch because of double vision, but prisms in my glasses fixed that.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why?

I. Don't. Know.

Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly."

Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."

Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."

And, "Please don't make "Arrrr, matey" sounds when I have a patch over one eye. If I’m wearing a patch I have double vision, probably a severe headache from the double vision, and I'm exhausted. Unless I take the lead, I'm probably not in the mood for jokes."

I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."

And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"

We are out there. We are someone you know.

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.

And we don't want to be invisible anymore.

Please take the time to be kind to someone today.  You never know the difference you may make in an otherwise very difficult life.

²² But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, ²³ gentleness, self-control; against such things there is no law.”  Galatians 5:22 ESV

“Judge not, that you be not judged. ² For with the judgment you pronounce you will be judged, and with the measure you use it will be measured to you. ³ Why do you see the speck that is in your brother's eye, but do not notice the log that is in your own eye? ⁴ Or how can you say to your brother, ‘Let me take the speck out of your eye,’ when there is the log in your own eye?” Matthew 7:1-4 ESV

Here's MY Sign

 

Photo courtesy of Invisible Disabilities Association

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again...could be an injury.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why?

I. Don't. Know.

Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I may walk unevenly."

Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."

Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."

I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."

And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"

We are out there. We are someone you know.

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.

And we don't want to be invisible anymore.

Please take the time to be kind to someone today.  You never know the difference you may make in an otherwise very difficult life.

²² But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, ²³ gentleness, self-control; against such things there is no law.”  Galatians 5:22 ESV

“Judge not, that you be not judged. ² For with the judgment you pronounce you will be judged, and with the measure you use it will be measured to you. ³ Why do you see the speck that is in your brother's eye, but do not notice the log that is in your own eye? ⁴ Or how can you say to your brother, ‘Let me take the speck out of your eye,’ when there is the log in your own eye?” Matthew 7:1-4 ESV

Catching Up

I have had the craziest year.  Seriously.  Even before that. I think it started in November with the first round of pneumonia...coughing up blood... I remember I started the year off with a bang by getting a chest x-ray on my birthday.  I've been on antibiotics more this year than I have in the last 3.  I can only take one that I know of, so here's hoping my body doesn't change its mind again!!

I've had trach troubles, tummy trouble, taking care of a sick boy while having 2 wonderful visitors (THE highlight of my year)... And my office is STILL CLEAN!!  Whoooooo!

But it gets downright discouraging!  My goodness.  It's been one thing after another.  Plasmaphersis, CT scans, nodules in lungs, pneumonia, pseudomonas, strep pneumonia....THEN after taking care of a sick boy, I got to take care of a sick boy AND a sick husband, and then I got it after all of that!

Finally had my ENT appointment yesterday, and he's thinking a longer trach tube will do the trick.  Right now my natural, God-given trachea is flexing its muscle memory and trying to spit the dang thing out.  That's why I can't breathe half the time....because I'm breathing through an opening about the size of 2 1/2 coffee stirrers.  (Why, yes, I did measure...)

I'm behind on my writing, I'm behind on homeschooling, I'm behind on this 40 day prayer thingy I'm doing with Tracy...I just feel like throwing in the towel sometimes!  It's like, man, can I just catch a break or what???

Where is that Calgon when you need it??

However.  Because I serve a Living God, and because so many of my friends, my family, my family's friends, have been praying for me (unceasingly I suspect!) I am still here, I'm still kickin' (albeit weakly)...and I am thanking God for all the amazing things in my life.

A totally wonderful pick me up in the form of an unexpected card in the mail.

A totally wonderful (actually TWO) packages from a wonderful blogger friend, that was so gracious and undeserved.

An awesome visit from 2 precious college friends. 

A clean office.

Someone sending a friend of mine money so I could get my whole house cleaned TWICE!

There really is so much to be thankful for.  I DO have a lot going on health wise.  But I also have so many blessings in my life.  So today, let's all try to focus on the positive.  Even if it's that you're still alive.  Because I would miss you if you were gone.

One Facet of MG

One thing about MG:  you take a lot of medication.  A LOT.  So I thought I'd show you all what I have to do once a week.  And every. single. time. I have to do it, I want to throw it all out the window.

  These are all the bottles and boxes I need to fill my gigantic, four-times-a-day pill box.

The full box.  It's something like 42 pills a day at last count.

Trach cleaning supplies.

 Then, morning and night, I have to clean my trach.  I have to use a tiny bit of Hydrogen peroxide (some, but not TOO much or I get like burns around the stoma.  But I have to use SOME, or it gets infected really easily.)  and distilled water, I put that in the little plastic cup, and then use Q-tips to clean around and inside my trach.  I've had the trach just over 12 years, so I've cleaned it nearly 9000 times.  Probably more if you add in extra times for when I had to change it, or after surgery and I do it more often.  Between filling my pills (only once a week) and then cleaning my trach, it takes about 40 minutes.  How fun!

Just one aspect of what it's really like to live with this disease.  It's a lot.

I Really Am Still Here

This has been the craziest year.  The most medically invasive since 2000 when I was hospitalized for a diagnosis.  Coming up on 12 years.  Crazy.

But so far this year I've had like 30 medical appointments, tests, procedures, etc.  Had surgery on my trach last Thursday, and everything went really well.  However, the results are both good and bad (seems like everything in life has some of each)....the GOOD result is that the inside of my trach is granuloma-free, and I can breathe a lot better.  It also doesn't hurt on the inside. 

The BAD part is that the doc used silver nitrate (which is protocol), and it lingers.... It burns from the inside out, so this is what I have now:

Yes, it hurts as bad as it looks like it does.  It should be better by the time we leave for vacation though, and after tomorrow's plasmapheresis, I am DONE with doctors, dentists, tests, appointments, etc. until we leave.  SO I have 2 weeks of nothing but vacation planning.  Sigh.  It's about stinkin' time!!

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 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.

The Week From The Pit

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.

Today

Today the sun is shining so brightly,
But I cannot go out and play.

Today my husband is home from work,
But I can't do the same things he does.

Today Jacob is out playing with his Daddy,
And that makes my heart happy. I wish I could be there.

Today my eyes are filled with sadness,
But somehow don't overflow.

Today, maybe the tears are dried up
From all the crying done before.

Today my pain is overwhelming.
Physical, real, intense, pain.

Today my heart is heavy because
My pain is jealous and wants all my attention.

Today I had to take my trach out again
Because I couldn't breathe.

Today I scared Jacob because I told him
I might need him to run and get Daddy fast.

And that broke my heart. And now the tears come.

Today the inside of my neck looks like raw hamburger.
The pain is unbelievable.  But that just happens sometimes.


Today I don't want to be here....
So I thank God that tomorrow is another day.


Tomorrow may be better.


So I hang on....


To the One Who Knows.

Worsening Symptoms

Well, phhht.

I know I have been doing a lot the last few days...making Christmas cookies for Doug's work, and my new hobby, candy making. I'm up to two-layers in one candy mold. (I know, you can sleep better at night now, right?) Next, who knows, maybe...fillings! I know....calm down...try to restrain yourselves....

Anywho. I made a bunch more candy last night to put in a box for my mom and dad. They are in Florida over Christmas (although they probably won't get the box in time for Christmas because I'm waiting on pictures from snapfish). I think I made about 100 pieces last night. The night before that, I made yellow cookie bars, white-chocolate dipped pretzels, peppermint bark, and a butt load of candy. All that after going to the doctor and 2 stores, and I was already exhausted. I just don't know when to say when.

So last night I can't breathe. I mean like can't get air into my lungs because they already felt full of air. I'm fighting with my trach again. It keeps moving out of place, enough so that I can tell the difference in airflow. But continuing to muscle it back into the right place hurts like a mother. So I shove it back in place last night, so I shouldn't have had issues. Yet as I lay in bed, I can barely get air in. Oddly, I'm not panicked. I can tell that it's not my actual lungs, like before when my muscles were strong enough but my lungs were so asthmatic I couldn't breathe.

This was just like I couldn't make my diaphragm muscles or the muscles on the outside wall of my chest to move. So I'm taking these quick little shallow breaths. Fun. I'm wondering if that's why I can't sleep. Before I was first diagnosed I had horrible insomnia. My body was keeping itself awake, because it was dying when I slept!

Seriously, is that not amazing? As sick as I was, my body knew that if I kept sleeping I would have quit breathing long enough to die. God is amazing. That's just ONE tiny way in which He so intriciately made us.

I have one option for improving my sleep dramatically, and probably my energy: A BiPAP. It's basically as close to a ventilator as you can get without being in the hospital. It helps you breathe in AND out. A C-PAP just forces air in. Thing is, I would need a Shiley trach.

The trach I have now, which although I have issues at times, and it causes pain sometimes, is NOTHING compared to the Shiley. I think the devil himself designed the Shiley. If you're unconscious on a vent, yah, fine. But being a living, moving human being, not so much. I cough SO much more with a Shiley. It's way more irritating and painful. It's hideous to change. It's harder to clean. I need suction constantly. I have to have this horrible white foam band around my neck (I have enough hot flashes already!)

So I have to weigh the consequences of decreased breathing and oxygenation at night (which does vary...right now it's just really bad. Sometimes it's much better) OR living in daily hell from the Shiley, but have more energy (maybe) and sleep a bit better.

What a crappy decision to have to make.

However, I must remember that I am not my own. My life was paid for. The cost was Christ crucified. And so the Word tells me that as I glory in Him, so I suffer in Him. So I guess compared to being flogged, mocked and crucified my troubles aren't nearly as heavy as the Cross He bore for my eternal health and well-being. I just have to try to stay focused on that, and take it one baby step at a time.

Up Down Up Down Up Down

Good grief.

Wednesday night was SO fun...and yesterday was awful. I was on the verge of tears all day. I had to go to my hubby's work Christmas party, and asked him to come and pick us up (which is what he usually does). It's very difficult and exhausting to take Jacob anywhere on my own. Besides the fact that I can't tighten the straps on his carseat as tight as they should be. I just don't have the grip or arm strength. It gets pretty snug, but not as tight as it probably should be.

So he is super-stressed at work. They are nearing the end of a 10+ million dollar expansion, and doing start-ups this week. It's just a pain in the butt. (Not to mention that something started on fire as he was leaving).

At supper last night I said to him, "So work is really stressing you out, huh?" And he's like, "It's not so much work as it is stuff like today...having to come and get you and Jacob. I should have just asked you to take the car." OUCH. (I ended up taking Jacob home by myself because when he came home to get us, he took the truck). I just lost it. He was like, "What's up?"

I told him I haven't been telling him how I feel because I know he's stressed and I didn't want to add to the mix...but that I feel like I'm sick when it's convenient for him...like when he doesn't want me to go anywhere, or do anything. But when it INconveniences him (messy house, having to pick me up, etc.) then I'm fine to do whatever. I FINALLY got it out. I've been feeling that way for MONTHS.

PLUS, even though I felt lik sh!#, I tried really hard to look nice, wore a new necklace and earrings, a pretty black and purple shirt (no, not my new one, Joanna!). I put on some black shoes. They looked really cute. However, I KNEW I wouldn't be able to walk well enough because of my balance, so I got my cane. THAT'S when Doug called to say I would have to drive home. So...I changed my shoes so I could walk better. Stupid clunky sh!#-kicking shoes. Nice.

Did Doug tell me I looked good? Nope. Did he even notice? Nope.

I know part of that is just a man thing, but I feel like I'm so alone in this house with this disease, and I told him as much. (For any of you who know or see my husband and read this blog, please don't say anything to him...) He's (and to some extent I have) fallen into the trap of "Oh, we're married now, I don't need to be as nice and sweet as I did when we were dating or first married. And when I have a couple of good days, it's like he forgets my limitations.

Don't get me wrong, I wouldn't trade my husband for anyone in the world. This man slept on the couch for SIX MONTHS while I was in a hospital bed in our living room when I first got out of the hospital. He had to suction my trach several times a night. He still worked full time, took care of me full time (someone came to stay with me during the day while he was at work). He is a hard worker and wonderful provider. He is super smart and ingenious and clever. I know he loves me and I trust him with my very life. He is faithful and a Christian...He is my earthly ROCK. (But as you know, rocks aren't very sensitive!) Sorry, couldn't resist.

It felt good to get it all out, and we'll just see what happens from now on. Probably the same thingf that always happens. Things change for 10 minutes until something else comes along. {Sigh}

It's been a crappy couple of weeks with the trach. I'm going to have to make an appointment to see the ENT in January...I may just need a new trach. The one I have is a year old. Maybe that's the problem. I keep tripping over the stupid dogs, and wrenching my hips. It just gets old being able to name what's RIGHT about you more quickly than what's wrong.

Oh, and to top it all off I took the Dr. Oz "Real Age" test. I'm 52. Nice. Well, sometimes I feel like 90, so I guess that's not TOO bad!!

Dead Roosters and Other Happenings

I TOLD him it would happen.

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

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

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

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

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

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

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

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

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

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

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

He said, "Um, why?"

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

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

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

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

Have a good one!

Trach Trauma

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

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

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

Anywho...that's all for now.