Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Monday, May 31, 2010


June 2, 1992 … A day neither I, nor my family are likely to ever forget. It is the day a saw was taken to have my breast bone and was opened wide to remove my thymus gland. This had the hoped for potential of putting me into remission.

October 13, 1989 I was a healthy, strong and active woman expecting (13 days past due date) her first child. October 14, 1989 I was a new mother and had been ushered into the world of medicine, medication, diagnosis processes, surgeries and the chronically ill. I had been a full time student, waitressing full time and walking 5 miles a day. Within 3 days I had double vision, my arms would fall when I’d try to do my hair or make up, swallowing and chewing had become an issue and I’d fallen several times.

It wasn’t until the second week in March, 1992 that I was diagnosed with Myasthenia Gravis. (that, is and of itself another story ) The treatment, they said, was a drug called Mestinon (I call it my little white miracle pill); Steroids; Imuran; and a thymectomy.
Because of my family situation it was decided that the thymectomy would take place in June after school was out. (Husband was a full time student, Mom was a teacher). I became more and more nervous in the intervening 3 months time. The idea of having my chest cut open was not my idea of a good time. However, by this point, I was willing to do anything to get rid of the overwhelming weakness and fatigue. Ironically, 18 years later, I’m still willing to do anything to get rid of it.

June 1, 1992 I checked into my local hospital, and was prepared, again for the surgery I’d have first thing in the morning. They had me shower and cover my chest in beta dine. I went to sleep and woke up as they were giving me a pre-surgical medication. I got down to the surgery area and was already getting a bit groggy. All I remember is that my sister in law was on duty (as a surgical nurse) and she was there making sure I was being well cared for. The anesthesiologist came up to talk to me and all I could think was “those eyes! They’re beautiful!” To which, I announced to him and everyone else around. (Not in my normal behavior!)
I was taken into the operating room where I remember the surgeon saying hi, and the beeping of the machines and then I was in recovery demanding to know if my babies were OK. My sister in law leaned over me to say that they were fine, I’d had surgery and the babies were not involved. (I must have thought there was an accident or something). The pain was unreal. The one thing my sister in law said was nice is that I’d not remember flirting with the anesthesiologist or the demands to know my children were ok. Um … nope, remember both clearly!

I had been told that morphine would not be used because of it’s associated risks with myasthenia gravis. I do not remember the medication that they said they’d used. In the operating room they gave me my first dose and apparently, I started to crash. They gave me IV Mestinon to help and then gave me morphine because worst case scenario I’d need a respirator that was going to be needed if they used the substitute medication. Ironically, the Morphine *didn’t* effect my MG. Later that day, there was a nurse that was talking to me, telling me that I would be unable to remember most of what happened due to the morphine and to not let that bother me too much. Ironically, I was probably as clear headed on the morphine as I am now (which is kind of scary if you think about it too much!).

About 6 hours into the ICU stay, a nurse came walking into my room, assuming I was asleep (MG was causing my eyelids significant drooping, it was easier to keep them closed) she told the nurse that there was this guy who claimed to be my brother, but there was no way … blond hair, significantly lighter skin and blond mustache … I grinned a myasthnic snarl and said “That’s my brother in law, Terry!” The nurse looked at me a bit sheepishly and said “boy am I glad morphine won’t allow you to remember me.” (WRONG AGAIN!)

My brother in law came in and joked with me. He told me some ridiculous joke about a llama and a camel that for the life of me I can’t remember. (Go figure)
That evening, the pain started to worsen. I asked for some pain relief and the male nurse said he’d get some morphine. No one had told me or my husband that they were using morphine. All we knew is that morphine could be cause for need for respirator. We both went into panic demanding something else. The nurse rather callously said that the only thing on his orders was morphine and he was not going to call the doctor at 9:30 pm to ask for pain relief for anyone.

My husband, became upset (understandably) and demanded a solution. My chest had been cut open and he (nurse) was going to wait till the 9 am rounds? Almost 12 hours without pain relief was unacceptable. They argued for several minutes rather loudly till the nurse slammed the door and came back in and shoved my chart at my husband to show him that they’d be using Morphine. My husband took a few deep breaths and explained to him that no one had *told* us I was getting morphine, just that it would never be used on me.

The nurse got the morphine for me, then I didn’t see anyone till the next morning. I woke up to the surgeon saying “What do you mean you’ve not checked on her since 10 pm? What is ICU FOR?” (I’ve had 15 surgeries, and 27 stays in the hospital, I’ve had 3 bad experiences, and 2 of them were in this same ICU. But when Don spent a week there, it showed no evidence of being what I’d experienced.)

A day or two after surgery I learned that respiratory therapy was going to come in about every 3 hours. They would put some liquid into this little cup, plug the tube into the wall and I’d breathe and I’d feel better. They’d have me cough and I’d wonder how someone could go from savior to torturer in 5 minutes time!

They said I’d be in the hospital for about 5 to 7 days. That came and went and neither my blood tests nor my breathing tests were where they felt they could send me home. By the 9th day, they said I was getting close. The 10th day I received a call from home, my 3 year old had stopped talking …all together. This child who was using complete sentences at 1 year old had stopped talking and stopped communicating. I spent 2 hours crying over it … afraid, worried and desperate to get home. I heard my surgeon’s voice in the hallway. I got up out of bed and walked to the nurses station and demanded to be let loose so I could go home to take care of my child. He said that anyone that could stand that straight, walk that fast and be that determined, could go home.

It would be 15 years before I realized the importance of some of the short term relationships I'd built. I was a flexible patient. Understanding, and kind. I was not demanding and was, for the most part, complient (and if I understood the importance, I was totally complient) I asked the doctors, nurses, nurses aids and respiratory therapists how their day was going. I thanked them. I tried to never take advantage of my role as patient. When my husband went into critical condition 3 years ago ... I dealt with many of the same people. They remembered me, they remembered what kind of a patient I was ..and they bent over backwards in their patient care of my husband. (While I realize most people might not be remembered, having such a rare illness as Myasthenia Gravis, married to someone with SEVERE effects of polio .. that patient kind of sticks out in ones mind)

They let me go and a week later I was in the surgeon’s office … my baby (6 months old and 18 pounds) had been hospitalized with pneumonia. He’d gotten hungry and the nurses weren’t coming to pick him up to give to me to feed him. Time went on and he was becoming hysterical and I picked him up … a bit more than the 5lb limit I’d been given. My breastbone immediately let me know that I’d made a drastic mistake. The surgeon said I should have just given him the bottle in bed … the problem was, his reflex was so severe that he’d throw up if he wasn’t at just the right angle, he’d throw up (which was the suspected cause of the pneumonia, aspiration). It wasn’t that easy … so the surgeon called the pediatric floor and said that they MUST do the lifting of this child in a timely manner that did not risk his patients health in the process. He also put in a call to the family doc who was caring for both myself post surgery and my baby.

At the time, I was sure that the thymectomy would be my ‘miracle’ heal from the surgery and sometime in the next 3 years the MG would magically go away. It didn’t work that way. It’s been 18 and while MG is no longer the prominent focus of my life that it once was … it is still there, daily as a reminder that I must put my health in the forefront.

I have been asked, since the surgery did not work, would I do it again if given the chance, knowing what I know now (about the chances of it working). Yeah, I would, I’d have done anything to rid myself of the feeling in my muscles that it gives. The reality is, if I went to my neuro tomorrow (I have an appt at 9 am) and he said “there is evidence that we missed a bit in your thymectomy, if we go in and remove the remaining cells, there is a 10% chance of total remission” I’d do it .. it’s 18 years and I’m significantly better …but the weakness is uncomfortable and undesirable and again .. I’d probably do anything to rid myself of the symptoms of the MG.

Thursday, May 27, 2010

Yoga is more than I'd expected

Letter to my therapist (I've been on a month break, I see her next week)

I don't expect you to read this before I see you next Wednesday, but I almost emailed you last week and spent the whole week talking myself out of it. I thought if I continued to talk myself out of it, I might not even bring it up next week so, for accountability sake, I'm emailing it now. It also helps that I've just finished with my class and it's all fresh in my mind.
I've been interested in Yoga for years, but wasn't healthy enough to do so, so when I got the scholarship to do this AND the doctor's approval and I knew you were all for it, I went for it. As you said "in typical Peggikaye style."
I was excited and caught quite off guard by the pain relief ... that alone makes this journey worth it. If I can get 6 hours a week of pain free, it's golden!
Last week, when we got to the end, the meditative portion, I became almost tearful and had no idea why. Tuesday, I realized that the tearfulness started when Sunny said to 'let the earth support you' I think the feeling of being supported, not having to do it myself was a bit more than I'd expected.
I've been praying about this for a while, and was asking God to give me a scripture in particular to meditate on. I sat on my mat today and immediately a couple of scriptures popped into my mind that I usually don't think about in relation to me, but have used frequently when trying to encourage a friend Psalm 139:14 I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well; and Jerimiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

I didn't expect that and as hard as I tried to think of some other verse to focus on, throughout the whole work out if I wasn't concentrating on breathing and poses ..those were the words running through my mind.

Tuesday, I made the drastic mistake of letting my perfectionism come through and wound up sooo very sore ... I didn't try to make accomodations, I tried to do what the instructor was doing ... part of it was frustration at knowing that there was a time in my life that my muscles and joints could do those things, part was frustration at my weight and my long time frustration with my legs being too long for my short body and my arms being too short. Not a good combo when you're trying to do certain things, add to the mix the weight getting in the way, I became competative with my teenage self and frustrated at my middle aged self ... and determined to do it 'right'. lesson learned.

So, today, I spoke with Sunny before class and she said she was somewhat surprised at what I could do, having never taken yoga before, but I was doing it, so she let me be. She promised to either verbally hint that the pose could be accomodated or to show me a beginning pose. My soreness disappeared as class went on. Which, hit me that I'm working so hard to be perfect that ... I usually wind up hurting myself in the process.
She's been talking about some of the philosophy of yoga ...today she talked about not being greedy. I can't remember the terms she used, but the way she phrased it included trying to gain skills that are unnecessary .. and at times may not be what God has planned for me. I may be over philosophizing there, but not sure. I'm going to think on that.

When we reached the meditative part of the class and as I started to relax the tears started up again. I tensed up in an attempt to stop them (which worked) and as I breathed to relax again, the tears started ... oddly enough, I've been so afraid that if I cried I'd be a bumbling mess, but it wasn't like that, it was simply tears rolling down the sides of my face. It struck me that since I was supposed to be perfectly still, I couldn't wipe them away. Tensed up again and the realization that I've spent years fighting tears ...and the energy it was taking to fight those tears ... suddenly seemed as wasteful as the oil spilling into the gulf. (crude analogy, but it was what came to mind.)

As I relaxed, the tears came again and Psalm 56:8 came to mind
You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.If I am hanging onto them …how can God collect them? So, I laid there with tears falling down my face and not able to particpate in the exercise if I fought them and unable to wipe them away to hide them … and so they rolled down my cheeks. They were gentle and easy and no one seemed the wiser as we packed up to go.

I’m a bit overwhelmed … I know you mentioned the yoga effecting emotions, but I’m not sure how, or why or if I even am supposed to understand it at this point. I got in the car and turned on my CD and a song came on called “Remember Surrender” (same CD as the one that has Less like Scars that I shared with you a while back)
Remember surrender
Remember the rest
Remember that weight lifting off of your chest
And realizing that it's not up to you and it never was
Remember surrender
Remember relief
Remember how tears rolled down both of your cheeks
As the warmth of a heavenly father came closing in

I want to do that again
Why can't I live there
And make my home
In sweet surrender
I want to do so much more than remember

Remember surrender
Remember peace
Remember how soundly you fell fast asleep
In the face of your troubles your future still shone like the morning sun
Remember surrender
Remember that sound
Of all of those voices dying down
But one who speaks clearly of helping and healing you deep within
I want to do that again
Why can't I live there
And make my home
In sweet surrender
I want to do so much more than remember
Oh surrender.

Anyway, those are the thoughts that have been going through my mind. I’m feeling a bit out of control because I have no idea where God is going to lead me with all of this and well, I kind of like knowing what I’m doing, why I’m doing it, where I’m going and how I’m going to get there.

See you Wednesday.

How Great Thou Art, in Sign Language

Ignore the messy kitchen. I signed this a couple of months ago (then couldn't get it to upload on my desk top computer, but this little laptop did it with no problem) for Medi Medi Mary (M3)

About half way through I get this funky expression on my face ... as I realized that I should have listened to the full version of the song before signing (for timing as well as lyrics) and maybe, just maybe practicing it a time or two ...and maybe brush the hair, a tad of make up and not in Pj's .... but by the time I realized all that I was half way done ..so I just kept going. I don't think I've signed this hymn before, even though it's one of my favorites.

Thursday, May 13, 2010

Summer's Adventure

In 1997 I asked my doctor if I could do yoga. I wore AFO's (Ankle Foot Orthotics, they are the brace that goes from just below the toe, to just below the knee with a hinge at the ankle). I had had many issues with tendonitis, joint injuries ... several of which required surgery ...3 knee surgeries and shoulder. Countless steroid shots.

I needed help to walk up the stairs and down the stairs resulted more often than not in a tumble down the stairs. A gallon of milk was as likely as not to land on the floor. I dislocated my shoulder by slapping a friend in the shoulder as part of the musical we were in.

My ankles would twist in a heart beat, every single joint would hyper extend. I was born with hypermobile joint syndrome, but the weakness of the myasthenia gravis intensified the joint instability.

My doctor said that yoga was a very bad idea. Weak muscles, that only get weaker with use and unstable joints ... yoga was not likely, at that time, to make me stronger and the flexabilty would worsen .. in my case a bad idea.

Here I am 12 years later with lupus having effected so many joints ...the hyper extention is no longer an issue for almost any joint. My thumb can ALMOST still touch my arm, where I used to be able to lay it flat on my arm. My knees don't hyper extend, neither does my ankle, shoulders toes or knees. A few have gotten tight beyond what's normal.

I can walk up and then down a flight of stairs (although there are times I still fall). I no longer wear leg braces. In short, I'm healthier than I was 12 years ago. So, I asked again about Yoga, same doctor thought it was a GREAT idea and gave me the go ahead.

I'm not a person who breaks the ice easy. I don't like going to strange places and if I try something new, I'm likely to need a friend to do it with me.

But this summer, my determination to do something new and different ...and healthy ...drove me to seek out a yoga class. I found one, signed up and went to my first session on Tuesday.

I had trouble with a few of the poses, but mostly because of my weight, not ability. I LOVED the session. When I got home I wrote the following to my therapist:

I just came from my first yoga class. I absolutely loved it! I was afraid ... something new ...new people ... expectations ...and then the ever present fear of rejection ..for whatever reason, but in this situation, specifically my weight.
I also was afraid I'd be fairly miserable at being physically able to do anything.
I had a chance to talk beforehand to the instructor when I signed up. She asked me about my health issues (she was familiar with most of them) and said she knew how to help me make the appropriate modifications.
She also said she'd let the class know that it would be a bit longer to allow time to help me.

I showed up, everyone was incredibly nice and I felt absolutely no judgment. Lots of encouragement and hints for 'survival'. We started and the extra time turned out to be unncessary. She didn't need to help me with much. After class she said that my own instincts to modify appropriately were remarkable. She also asked me "Are you SURE you've never taken yoga before? ever?"

That made me feel good. I could do a large part of what we did, some, my weight is an issue, but most I could do. Balance has always been a particularly bad issue for me, i've spent WEEKS and hours in PT on balance ...until they gave up and said that I just needed to be careful. I was able to do the balance pose, at least the beginning pose.

She told me that my phase one was 'beautiful' and after class I got a lot of encouragement from the other class members. One guy said I'd be teaching before too long (a bit of an exaggeration,but his intent was very kind!)

Dr. Holt said I could go up to 3 times a week, the package I bought was 12 classes in 100 days, so I figure 2 times a week to start probably good. I can take it next fall at TCC for free if my classes don't conflict with the yoga classes.


It was amazing. I walked out of the class completely pain free for the first time in 15 years. The pain relief lasted for 3 hours and I'm still in less pain than I've been in a long time. I go again to my class tomorrow. I'm looking forward to this new adventure ... self discovery ... healthy ... mindfulness ...

Tuesday, May 11, 2010

poetic take on MG

I have plans today.
I'm going to sweep and mop,
I'm going to put things away.

I have plans for tomorrow
The play I've been dying to see is playing
I'll shop for a dress or maybe I'll borrow.

I have plans for next week,
There is a parade down mainstreet,
That is ... if i don't get too weak.

I'd planned on cleaning,
but my arms were too tired,
My legs made sure on the wall I was leaning.

I'd planned to go and see a play,
But my eyes went double and eyelids droop,
So once again, home in bed I will stay.

This Myasthenic Monster crops up unwanted,
When chores or fun or adventure comes,
Whatever it says, I refuse to be daunted!

When Myasthenia roars, I will roar back,
I will push forward, and rest if need be,
Rest, regroup, till the muscles don't lack.

Disappointment has come once to often,
But I know that I'm stronger than the disease,
No matter the goal, my resolve won't soften.

I sometimes have to say no,for sure,
But as often as no, I will stand and succeed,
Push forward and back, but I will endure!

Saturday, May 08, 2010

Amy Grant - Better Than A Hallelujah (Slideshow With Lyrics)

God loves a lullaby
In a mothers tears in the dead of night
Better than a Hallelujah sometimes.
God loves the drunkards cry,
The soldiers plea not to let him die
Better than a Hallelujah sometimes.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.

The woman holding on for life,
The dying man giving up the fight
Are better than a Hallelujah sometimes
The tears of shame for what's been done,
The silence when the words won't come
Find More lyrics at www.sweetslyrics.com
Are better than a Hallelujah sometimes.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah
Better than a church bell ringing,
Better than a choir singing out,singing out.

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah

Better than a church bell ringing
better than a choir singin' loud
singin' loud
Repeat Chorus

Friday, May 07, 2010


The spring semester of 2010 is under my belt.
I took Intermediate Algebra
Adult Psychology
Child Psychology
and Women's Studies.

The intermediate algebra, like beginning algebra, took the wind out of me. My professor reminded me that most students in the class have A) had algebra before B) they haven't been out of school as long (although most out at least 5 years) and therefore for them, it's a review. I never took Algebra at all, so for me, this is new information. AND it's been so many years since I had pre algebra (almost 33 years now) and most people take it in high school and have a full year to take what I took in 1 semester .. and adding to that, I managed to accidently get into an 8 week class ...so I had 36 weeks worth of information jammed into 8 ... and for me, it's not a review.

That made me feel better ...that and the fact that it's not a credit class, therefore it has no bearing on my GPA no matter what (not A nor F) So, I'll repeat these classes as necessary.

In Adult Psych I ended the semester with an average of
Child Psych
Women's Studies

Between yet another semester on the President's Honor Roll and my induction into Phi Theta Kappa Honor Society as well as elected to Vice President of Service in Phi Theta Kappa ... I feel pretty good about the semester!

I'm also, as of now, a Junior. I went back to school 4 semesters ago feeling very anxious ...could I do this? Was I physically capable.
I rarely let onto how much doubt I felt ... but I was absolutely terrified.
I wanted my support system to know my passion and support that, not support my fear ... so I kept my fear to myself.

But this semester it has finally dawned on me that not only do I NEED to do this, but I, in fact, CAN do this and more importantly, SHOULD do this!