Zippy's Adventures in Oklahoma

We've had a lot of fun in Tulsa and Broken Arrow.

Zippy came and met the cats and the new puppy Hershey. Even camera shy Twitch allowed a picture with Zippy! That is one popular Lobster!!

The boys took Zippy to Bass Pro Shop. Zippy had a lot of fun playing with the animals ..he really liked scaring the black bear! He was a bit annoyed that the picture of the bison didn't come out. I can't say as I blame him. Come all the way to Oklahoma and pose with a Buffalo and Samuel forgets to use a flash! Hmm I told him that's teenagers for you!

I took him to see the Arkansas River, after I convinced him that it really WAS the same river he'd seen in Arkansas, he was really impressed.

We also saw The Golden Driller and met my Pharmacist. He was more than happy to pose with Zippy. He was really proud of Zippy for all the work he's doing for raising money for research for pediatric brain cancer.

Yesterday, I took him by the gravesite of my friends daughter. Zippy was very saddened by that, but realized that was why he does all the traveling he does. He doesn't want one more family to have to bury their child from that awful disease.

Today (no pictures yet) we went to ORU and saw the praying hands. Zippy really isn't sure what to think of that. I told him that it was ok, because no one in Tulss is sure of what to think of those either, no matter what their beliefs are.

We went to the top of the Cityplex tower and looked down. top of 60 floors and Zippy said "WHOA Lobsters don't belong this high!"
We took pictures with my favorite Dj's! They let me back while they were on the air!!
They thought Zippy was the neatest thing! I even got a free CD out of it!

I would have let Zippy tell the story, but right now Zippy is sleeping.

He'll tell the rest of the story when we get the rest of the pictures up.

Zippy has arrived.

Zippy got here today.

Hot, and tired after his long journey. Greeted by a hyperactive puppy. He wanted to be sure that the puppy was not able to get to him. I assured him that we would keep the puppy, Hershey away from him.



Hershey was sure she could get help from someone getting closer. She didn't.



Taking Zippy on a quick tour of the yard, I told him the tree in the front yard didn't belong. It was a sore spot with us. He offered to chop it down.



I told him not to feel bad. We never watered it, and the ice storm didn't kill it. It's indestructible.

Inside the cool house, Zippy immediately was relieved to feel the air conditioner in the Oklahoma heat and humidity!


First to meet him was Samuel


Camera shy Twitch met Zippy and even posed for the camera!

Better official pictures will come ..but our digital camera is a little cheapie!

Hershey

This is for Mary ...



HERSHEY! My chin is not a chew toy!! (as you can see, there is quite a bit of chin for him to chew on!)

Fun With Zippy!

In a day or two, I will have a new arrival in my household.

Zippy, the Lobster will be coming to visit me.

Zippy has been with Ramona in Arkansas, and having quite a lot of fun.

Zippy, isn't just any lobster. He is a LOBSTER.

He's traveling around the world to med bloggers to help raise funds for research for pediatric brain cancer.

As anyone who's read my blog for while knows, this is a particularly close subject to my heart. (posts not in order of Kylie's illness)

Please, please visit this page to donate to Zippy's cause. The Kylie's of this world need you. The people who are left behind, like Tyler and Brenden (her brothers) and her mother Teresa, need you as well. As do her friends.

Cold.

I just wrote a whole post ...and second guessed myself.

I don't do that often ... but occassionally I do.

I want to post about why I'm not in therapy anymore ..and what happened. Each time I go to do it, I stop myself. It wasn't my idea, nor the idea of my therapist, but rather, a rather sudden decision of the eating disorder clinic. Based on the actions of someone no longer involved in my treatment.

I always start to post, because it's such a hot topic to me ..then wonder what would happen to my therapist if something happened because of my post. It wasn't fair that I was removed from her care ...so much so, that in the meeting with the clinic director, herself and me ..she kept using the phrase "Patient abandonment" while he kept shooting her visual darts that if looks could kill, she'd not have survived the hour.

It was such a hot topic that it left me unwilling to see another therapist ..at all.

And yet ... I'm going back to school to become a psychologist. How ironic is that?

Granted, I'm going to do child psychology, not therapy for adults with issues such as eating disorders, PTSD, or any such issues ...but still.

Part of me left the office that day (ironically, April 1) determined that it would be the end of the eating disorder, therefore, it wouldn't matter. How I thought I'd accomplish that feat after years of not being able to, I've no idea. My recent blood test still showed a protein defieciency ... constant cold ..very cold ..docs answer ..nutrition. Stomach pain ... possible scar tissue from gallbladder surgery (having scan on Monday) but most likely caused from not eating enough over last year and a half. (not real sure how that one works ...) Metformin started ... bothers me ..called endo ... answer "increase calories to 1500, then if it still bothers, call back" DAGNABIT! Does everything come down to nutrition with me ..and why can't 800 to 1000 be enough (technically, I know the answer that remains, significantly beside the point.)


So I wonder ... will I ever have the courage to fully write about the events of April 1, 2008 ... or about what is really involved in my eating disorder. The first, I'm not sure I have the *right* to write about on a public blog, the second, I wonder ...maybe I have the responsibility of writing about ..at least some day.

A Thank You and A Why

Recently, I mentioned that it had been recommended to me to wear an eye patch when I get fatiqued (because of double vision) but that my latex allergy made it difficult to follow through.

Fellow Blogger, and quilter, extraordinaire, Ramona Bates, surprised me by deciding to do something about my problem.

I recieved them last week. I knew that I would use them, but am a little surprised by how much I'm using them. I don't know if I'm just overly tired from over extending myself ...or if the relief they bring is so welcome ... or if they were just that needed. So THANK YOU, Ramona!

Sixteen years ago when I was diagnosed with Myasthenia Gravis, one of the first things they told me was to get an eye patch for the double vision. They also suggested using one to PREVENT double vision.
My neurologist also said that it would decrease overall fatique. I never quite understood that ... but found rather quickly that he was telling the truth.

As I learned about Myasthenia and how muscles work, it started to make more sense to me how and why the eye patches not only help with double vision, preventing it and helping with the fatigue factor.

Myasthenia Gravis is an autoimmune disease that effects the voluntary muscles. If it can be moved, the muscle can be effected. MOST Myasthenics are effected in the eye lids first, then eyes, then it moves down from there.

I was a bit odd, in that my mouth was the first to be effected, my eyes next and then my eye lids came after my whole body was effected. My eyelids are still not all that likely to droop. When they do droop ... I'm in a bit of medical trouble and respiratory issues tend to be right on the heels of my eyelid droop.

There was one time that I was very sick with bronchitis. The doctor wasn't available so I saw a Physicians Assistant that I'd never seen before. He wasn't pleased with my infection, but wasn't really alarmed at my appearance. My husband, wanted him to get my doctor. He kept saying "Look! She's in trouble!"
The PA finally said "She looks like a patient with Myasthenia, she has myasthenia, I don't see the issue."

My husband finally said "PLEASE go tell the doctor what you've just told me."
So he did. The doctor came rushing into the exam room ... to where I got rushed out and admitted into the hospital. He knew that when I LOOKED like a Myasthenic ... I'm in trouble. I wound up with a series of plasmapheresis to pull me out of the crisis.

The double vision I experience, however, is FAR more frequent. Almost daily, if not daily. By anywhere from 7 to 9 pm, I'm getting a bit blurry eyed, by 9 or so, I'm crosseyed. By 11, anyone looking at me can see that my eyes do not track. This, is even on a good day. Get myself tired ...and it happens early ... today ... I woke up with my eyes not tracking. Double vision by about noon. OOPS.

Here is a PDF file from the MGFA That gives coping hints for those with ocular MG (effecting the eyes only. It is usually also given to those with generalized MG.

One of the reasons eyes are so very effected is that, in MG, the more a muscle is used, the weaker it gets. Over use just wears out the muscle. Eyes, almost never get rest ...while awake, they are constantly moving, and changing what they are doing, even subtly. While asleep, they move rapidly during REM ... they simply are a hard working muscle group that the immune system has decided to target.

When double vision happens, you put the eye patch on, and you only are looking out of one eye, which means you are only seeing one image. It allows the covered eye to rest, and to not work as hard. It is VERY important to not keep the eye patch over just one eye, or to wear them all the time or you can actually damage the eye sight. But to give the eyes a break, you can wear one for an hour, then switch it, and the eyes will feel like they've been given a new lease. The facial muslces that help to assist the eyes, stop straining because the eyes don't have to work as hard.

Then because the face is more relaxed, the shoulders and neck tend to not have to work as hard ...and it snow balls into the whole body working more effectively.

It also reminds you to ..um ..er .. take it easy and that you might be a bit beyond your limits if it's too early in the day.

This last friday, I did some deeeeeep cleaning. I got mad at my kids and did 12 loads of THEIR laundry in one day. Then cleaned out my kitchen cabinets, re organizing them. (I get mad, I clean). I also did a few other deep cleaning gems that needed attending to, but could have waited ...or done by teenaged boys.

Then Saturday, I decided that I wanted to try the Butternut squash soup I'd been seeing on Food network ...and I cooked it. It took a good part of the day. I also made a pork shish kabobs. I spent 8 hours total in the kitchen.

I went to pay the Macy's bill ..and found a treat in my car. An abandoned puppy (complete with note! telling me breed and age)!! Which, by the way is Black lab/ Austrailian shephard. She is 8 weeks old. She has stolen our hearts and we've decided to keep her ... so house breaking and playing, and training ensued. Including up in the middle of the night to take her outside. We've named her Hershey.

I thought about making the boys do it, but realized they were leaving for camp on Monday (today) morning ..and figured I might as well do it myself.

Then Sunday, church, where I worked children's ministry and we had a church picnic ... in the sun and heat. Then home to get my kids ready for church camp. Which included a 10 pm run to walmart to get last minute stuff ..and struggling to get them to pack at midnight.

This morning started out at 7 am ... to finish running to get stuff they hadn't remembered they needed and didn't have (bathing suit!) and to get an umbrella because I don't own one ...and well ..housebreaking in the rain.

All that ...and my eyes are in desperate need of those patches!! I asked my son to take a picture of me wearing them. I put on a big smile and then took them to camp. Finally got them opened and was shocked to see ... my smile! Where is it???
MG strikes again!

So, while I look like I'm not smiling ... I am, it's an MG thing. The muscles are worn out.


Here is a picture of me back in February with a friend. I wasn't as tired, and you can see the difference in my smile




June is Myasthenia Gravis Awareness Month. Famous Myasthenics are Aristotle Onasis and Roger Smith (Ann Margaret's husband). There is also a soap opera actress who has it, as well as her character, but I never can remember who. There have been a couple of football coaches with it ..and a couple of years ago, a college football player found out he had it mid season!


So, now that I've posted ...and kids are tucked away in southern oklahoma at camp .. and Hershey is having fun with Don ... I think, I will tuck myself into bed. Thank you, again Ramona!

ChronicBabe Goes to Grand Rounds

ChronicBabe is a blogger who blogs about many issues regarding chronic illnesses. I found her initially through Grand Rounds quite a while back. Then we 'befriended' each other on facebook and then on Twitter.

This week, her Grand Rounds entry hit very close to my heart ..even closer than the norm.

When the person who needs the caretaking becomes the caretaker ... I've found myself increasingly in this roll both with my husband and mother.

There is excellent advice in there. I don't always follow it ..some I follow to the letter.

If you are a caretaker this is a must read. If you are a caretaker with a chronic illness ..this is a MUST READ.

If you have a chronic illness ...go take a look around Chronicbabes .. it's a nice time out of the day. Like chocolate on a tough day.

Flocking

This is all Vijay's fault ....
I tried Twittering at his suggestion and I've gotten hooked. Pownce, I think was
Moof's invite ... But Vijay suggested that I try Flock. An innocent suggestion.
So, I go and download it.

What happens? Hook line and sinker ... I'm reeled in like a trout in a feed pond!

It keeps my flickr, my picasa, my youtube, my twitter, my pownce, my blog ... everything at just one place ..it's an internet junkie's crack I tell ya!

the only thing I can't get on it (yet?) is my bloglines and YMX

Go ...look at flock ... it only takes seconds to download (even with my slowest dsl connection!) you'll see! It will keep even the most unorganized person all kept together in a nice little spot!

sigh ... I'm hooked!

Twitchy

I have a cat ... he's a beautiful Maine Coon cat ...a bit camera shy, who is determined that we not get a picture of his beautiful tail.



He is also the cat who bit me when I tried to bathe that tail.

http://picasaweb.google.com/Peggikaye/OtherStuff/photo#5207155856014117378"> src="http://lh6.ggpht.com/Peggikaye/SEOIqY_RCgI/AAAAAAAAAO8/KpqkDBXJMO4/s400/5-14-2008-10.jpg" />

From stuff

The bite itself is the bright red spot, the silver marks is the pen outlining where the infection kept spreading too before it finally started to get better.

Turkey cat.

Anyway ... twitch is all forgiven now.