Chain of Events

Pearls and Dreams


A couple of weeks ago ....
Dr. Sanity tagged
Shrinkette who tagged Blondzilla who tagged me who tagged Bronwyn....

Bronwyn, just got her list started a couple of days ago. She started her post and got to number three which was about never having seen a blue bird ..which sent me off on a tangent about blue JAY's and Stellar Jays ..which in turn, she asked me where I grew up that I was around Stellar Jays.

Which ... made me homesick ... I had not forgotten how beautiful the mountains of home are ... you can find posters and paintings everywhere of my home ... but I had forgotten about how historical my home town itself looked. I grew up in a little tiny historical town of Mariposa California. One of the first Gold Rush towns. HUGE county in the 1800's ... and then it was devided into many counties ...including, but not limited to:Fresno, Kings and Los Angeles (which, are no where NEAR each other today!)
Mariposa, has the oldest working Court house in the state. It is known as the gateway to Yosemite. Mariposa means butterfly.
Mariposa and Yosemite will always have my heart.

This is a satellite taken of my house that I grew up in


Main Street
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Main Street, other side
http://photos9.flickr.com/16641129_c5502449a7_m.jpg">

Leaving town
http://photos11.flickr.com/16678023_318b3448ed_m.jpg">

The Court House


Leaving town


Yosemite



Full Circle Dr. Sanity ...is hosting Grand Rounds today!

Count Down

Pearls and Dreams

59 hours and 45 minutes and I will be walking into the doors of the hospital to have my knee surgery. (Thursday morning at 7 am). I am not sure why this surgery is making me so nervous. I've had 12 surgeries for crying out loud! I'm a veteren when it comes to surgery! The myasthenia is in BETTER shape than with ANY other surgery. I did not have the lupus diagnosis, with my last surgery. So, technically, I should be less nervous. Why in the world am I more nervous?

Maybe the 2 year lapse between surgeries has left me out of the habit? (12 surgeries in 11 years). Maybe it's being over 40 and everything that's gone wrong in the last 6 months to confirm that the body starts to fall apart at age 40. Maybe it's just that it hurts so blamed much and I'm just wondering ...the other knee hurts so much too ... is the surgery going to really take care of the pain ..or just that sharp pain in the one place and I'm still left with pain because I have pain.

I'm not used to being afraid of medical procedures, surgeries or otherwise. I'm used to being confident. I'm used to understanding what's going on. I'm used to feeling confident that what I'm doing is the right thing. I know that this time it has to be done. I also know, that there is no guarentee that it will :
A) Work
B) Relieve even half the pain.

Will I be looking at MORE pain? Will I be looking at another proceedure? Will I be looking at a extended recovery?

I've had 2 knee surgeries. One on each knee. One went remarkably smooth. (Same knee being operated on.) They got in and didn't find the problem they were expecting to find, much easier to fix.
The left knee ... wasn't so easy. They found much more wrong and it took a lot longer than expected. Maybe that's the problem?

Maybe ..the problem is the pre surgery pain. I've had so many difficulties with prednisone in the past. Having taken it so many times for Myasthenia, it was always high doses. 60 mgs a day, 80 mgs or 100 mgs ..for 6, 8 even 9 months at a time. Moon face, weight gain, acne like you would not believe. My kids called it my 'cranky medicine' (it made me unbelievably cranky!). I'd get headaches coming off of it making it necessary to crawl coming off of it. It would do the classic problem with MG of making it worse before it made it better ...causing an initial worsening of breathing and vision. I saw it as nothing but a nightmare drug. It's only benifit that I really saw ..was it kept me off the respirator. Repeatidly ..it kept me off the respirator. I really saw no other benifit. (my neuro and primary docs saw otherwise.)

So, a year ago, with a lupus diagnosis, and symptoms flaring, unable to take plaquenil because of the MG ...and desperate. Dizzy, headache (not migraine) joints swelling, pleurisy, costochondritis, mouth sores, unable to function ... a 5 mg dose a day of prednisone was suggested. (It'd been suggested at the time of diagnosis, but with my history of prednisone problems it'd been adamantly refused). By Memorial Day weekend, I found myself in the ER, with the ER doc and my PCP questioning if they should admit me or not. They gave me the option ... try 5 mgs prednisone ... or be admitted. I was desperate. I tried the 5 mgs daily prednisone.

By Thursday of the same week ... I was functioning, not dizzy, mouth sores healing and able to get a deep breath and thinking "this is why people like prednisone!!!!!"

So, here I am ..exactly a year later ... off the prednisone for the surgery (it can cause increase bleeding and increases risk of infection) and I only have one thing to say

I WANT MY PREDNISONE!!!!!!!!!!!!!!!!!!!!!!!

Habitat and Grades

Pearls and Dreams

Habitat does not allow people who will not be on the title to do the sweat equity. Even the children who are going to live in the house. The only thing the children can do is get good grades. They get 1 hour for every A. 1/2 hour for every B.
Report cards came today. Samuel got us 5 hours (3 A's and 2 B's and Bj got us 1 A).

With the hours that I have put in this month, that puts us at 299 hours out of 450. However, our official hours will be 294, because we are not turning the grades in until June. JUST in case my husband doesn't make it up there as often as necessary in June. You have to put a minimume of 15 hours a month, with me being laid up from surgery, the grades will mean he will only HAVE to put in 10.

I was hoping to get in one more hour, and the grades and hit that 300 mark ... Tuesday will be the end of the first year of our involvement in the program. Would have been a nice way to end it. Oh well, we tried! We know that we are at 299 even if not on the board.
151 hours to go!

Home. There is a reason I don't like EGD's

Pearls and Dreams

I am home. They did not sedate me for the EGD. They gave me demerol for the pain, but it did not stop the discomfort. Since there was no sedation, there was no myasthenic crisis.

He decided while he was there he wanted to look at my vocal chords again. So we did that first. That was hard. Not sure I'm ready, or ever going to post about those results. Other than to say, the lupus is still evidenced in the vocal box. There was a few other things said too ..that was the hard part to deal with.

Then onto the EGD...

I gagged ...and gagged ... and gagged ...and gagged. I think I got two swallows in when he asked for them. He was very nice about it. I was so embarrassed.

He was concerned that there might be some kind of constricture, there was none. He did not need to take any biopsies. He found all the old ulcer scars, no new ones! There was plenty of evidence of reflux, but no damage, per say (as in Barrett's or such). The structural damage to the valve caused by the bulimia, was no longer evidenced! My last GI doctor told me that was permanent and would not heal. (BUT, that was before I got into treatment. So, I wonder if he wasl trying to scare me into treatment???)
Either way, it's healed now. I still have GERD, but, the Nexium appears to be helping it, so he said to continue. He put me on a GERD diet ... no chocolate, no coffee ...

I spend 24 years of my 40 year life with obessive dieting, food rules and restricting. 2 years of eating normally and suddenly ... I am having outside rules inforced on me for medical reasons. Go figure.

But, it's over, I am home, no myasthenic crisis. So as soon as my nose and throat stop hurting from the trauma, all will be fine.

Just in Case

Pearls and Dreams

Ok Just letting you know, just in case you don't hear from me in a few days.

Tomorrow morning (at 7 am) I am having an EGD. (that's the camera down the stomach for you unmedical types).
I am being sedated, so I don't know how much I'll be able to be on line tomorrow, it tends to get to me longer than the average person, and makes me weaker too ..sooooo ...

I have had 5 of these. 3 have put me in myasthenic exaccerbation requiring hospitalization (1 ICU). 2 I walked out.
The two I walked out ... I did not have full sedation. I am having full sedation, as far as I know. I will NOT go through partial sedation again if I can help it, I'd rather let the MG flare a bit and spend the nite in the hospital!! That was a traumatic event! Painful and horrible!

BUT ... the 3 that caused the MG problems ... I think probabably had far more to do with my extremely active eating disorder (yes, the GI doc figured it out by the EGD exam too, he was the first doctor to corner me on the bulimia) than the MG itself.
I am not active with ED behaviors now. So, my guess is that I will be able to walk away. My Prayer is that I will be walking away.

I told my pastor that if something happens my mom or husband would let him know. He said they better. He knows how to find me, he is well aquainted with finding me in that hospital. I said "Hey! I have not had surgery or been in the hospital in TWO WHOLE YEARS!" (well, I almost made it June 22 would have been 2 years)
He said "yes, well that's to make up for the every other month of the first 5 years that I knew you, literally!"
ok, so ...almost literally LOL (I wish he wasn't kidding!)

2 years no hospital? wow!

Anyway ... I have a friend who is going to contact my friend D. She has access to this blog. so if something happens, she could update this if she gets a chance.
Next thursday is my knee surgery and I WILL be staying at least one night for that one. It's always been one night, two has been discussed this time. Why ? Don't know.

But, the hospital of record for me ..at all times ..is Hillcrest Medical Center in Tulsa Oklahoma. So, if you get the urge to call in the afternoon and evening to see if I've been admitted, that's who you'd call. (918 579 1000 .... I think, check their website first thought) Before my knee surgery I'll post hospital address & phone number so you will all know where I am.

I hope to, by friday to be able to post about my sons follow up aapt to day with the pediatric resident for his asthma and eye scratch ... for now I will suffice it to say ... this resident is older than me and has the single worst case of ADHD I have ever ever seen in my life!!!!!!

WWOW!!

forgot to tag someone

Pearls and Dreams

Forgot to tag someone ...

Dr. Charles

&

Bronwyn

I was going to tag one friend, but I know she's super busy, and another set of blogging friends are in the middle of another set of meme questions and so, I didn't tag them, so, Dr. Charles and Bronwyn ... you two were the lucky ones tagged for this :)

10 Things I've Never Done!

I've been Tagged :10 Things I've Never Done

Pearls and Dreams

Blondzila tagged me to do 10 things I've never done ... so, after looking at a few lists ... and thinking about it over night ... here's my answers:

1. Never taken illegal drugs.
2. Never taken Algebra.
3. Never gotten a tatoo.
4. Never traveled oversea's.
5. Never scuba dived.
6. Never changed a baby's diaper if the baby was under 2 days old. (I was smart, let everyone else do it till I got out of the hospital!I knew I had years in front of me!)
7.Never been snowboarding.
8.Never been to Disney WORLD.
9.Never been to all 50 states (46 of them)
10.Never Died

Grand Rounds 35

Pearls and Dreams

Iatremia: The Chaplin.News Update: Grand Rounds XXXV

"A witty saying proves nothing." --Francois Marie Arouet
Welcome to Grand Rounds XXXV! As the summer begins to heat up,
the memory of the box office smash hits, catchy lyrics, t-shirt
slogans and favorite summer reads came unbidden to mind as I
compiled this weeks offerings. May I present to you The
Quotable Grand Rounds?

My Brain Functions Strangly

Pearls and Dreams

I was a good student. Not as good as I could have been, to be sure. But I had very good grades. Until, my senior year. I'd been in a Christian school in Colorado and moved her to Oklahoma. I went to my first public high school.

I grew up in a tiny town in California, population under 1000. I grew up in a town called Mariposa, right outside of Yosemite National Park. Then moved to Pueblo, Colorado. I thought Pueblo was HUGE big city. I know now, that it was very small. Then, moved here to Tulsa. VERY LARGE city indeed (ok, stop laughing everyone).

So, I'm a perfectionist. Everything must be just right. I'd would never step beyond anything I didn't have to do ...but I'd work myself to death to achieve perfection if I had to. I guess, with an eating disorder, I pretty much was working myself to death, in a way, trying to achieve perfection.

I left Colorado with a 3.9 GPA. I was not happy with my GPA. It wasn't good enough. So, I get to Jenks (yes, that really is the name) High school and I was VERY overwhelmed. My Junior year finished, and it was harder than I could have imagined, but I'd survived. I started my Senior year.

My humanities class ate my lunch. I got my first ever D. Nothing I did would help my grade. I was devastated. I begged, pleaded and argued with my mom until she pulled me out of the school and put me back into a Christian school (which, I wound up hating with a passion!!) so that I would not have to live with that D on my transcript!

However, I lived with that D ...forever ...on my heart. I always knew that I'd failed that class. I wasn't good enough. I couldn't succeed at it. I never got passed it. I always saw it as a MORAL failing because I got this D on my 1/4 of a humanities class my senior year. It was never because the teacher was hard. It was never because something in the system wasn't working right. I never investigated (never allowed my mom to ask questions why her 3.9 GPA student, in the gifted program suddenly couldn't pass the class). I thought about this class several times a year.

Every now and then, in a class at church, a question will come up along the lines of 'what is a failure that you wish you could change' or 'what is something that happened in your teen years that effected you your whole life' and ...that D is always the answer. I have friends at church that could tell you the story of my D as well as I could.

Yesterday, I went into my regular counseling session with my eating disorder therapist. We got talking about my son's grades (he's getting an A in spanish, which, I can't figure the math out ...87% average in class, 88% on the final ... um can we say TEACHER's PET?!?!? L informed me it's called bumping up for participation, cooperation, deserved grade etc) then she mentioned her own C's & D's in high school. Which ..quite frankly, surprised me.

my brain processed this information with:
Wait a minute ...you're a successful person with a master's degree ...how could you have had a C much less a D??? You have to have had better grades than me! I've done nothing!

So, she starts to tell me about one D in particular. Geometry. I tell her I only got on grade below a B, and it was a D in humanities. She started to laugh and say "oh yea, I got a D in humanities too!"

I never knew this ... she went to Jenks High school. She's 4 years younger than me. We had the SAME TEACHER!!!!! We talked about the problems that led us to both not be able to succeed. Same types of problems. Same difficulties.

L took it as "this teacher isn't teaching me right, she is expecting too much, and there is no way I can succeed" So, she did her best, told her mother that she would NOT get a good grade in it. Worked very hard at her other classes so her GPA would not be destroyed and has spent 18 years laughing about it.

I took it as "I'm a failure, there is something wrong with me or I'd be able to do this" For 22 years, it has remained one of my most humiliating experiences.

Same teacher, same class, same problems. My perfectionistic brain did not percieve it the right way.

Funny thing was about yesterday. I graduated 22 high school years ago yesterday. An odd time to be able to put it behind me.

Blogging types

Pearls and Dreams

By way of Respectful Insolence

You Are a Life Blogger!

Your blog is the story of your life - a living diary. If it happens, you blog it. And make it as entertaining as possible.

What kind of blogger are you?

You can lead a horse to water .....

Pearls and Dreams

On November 21, 1955, my Mother in Law gave birth to a perfectly healthy, 10 lb 5oz baby boy. She named him Donald. By the time he was 9 months old, she knew he was going to be trouble. She already had had 2 children, but this one was different. He'd voice his displeasure quickly and loudly.

In 1957, her sister, would frequently, suggest to my MIL that she keep this terror under control by tying him to the kitchen chair with his shirt tails. By 1958, my Mother in Law was seriously considering it. In the summer of 1959, my mother in law, now had 5 children, the youngest was 8 months old. Donald woke up one day not feeling well.

Taking her three year old son to the to the doctor, she found out the news that parents today, never have to hear. "Your son has polio." My mother in law, to this day, is incredibly grateful, that she never took her sisters advice to tie him to the chair with his shirt tails.

Don, spent the next 10 years of his life in and out of the hospital. He spent more time than either he or his mother can recall in an iron lung. Between the ages of 4 and 8, he had 6 surgeries. One to fuse 2/3 of his back, but they did not put a rod in his back. One on each of his knees. One on each of his ankles. One on his jaw.

The polio, had destroyed most of the muscle tissue, leaving him emaciated and skinnier than anyone could possibly imagine. He walked with leg braces and crutches. He spent his 7th, 9th, 10th and 12th birthdays in the San Fransisco Children's Hospital (his mother lived near Sacramento and was not with him). One of his worst childhood memories, you would think would be, of the iron lung, or of the many hospital stays ... but it's not.
It's of the school playground, one day, the teacher left the classroom after school, and he hadn't gotten all his stuff together. His leg brace popped open. He bent over to fix it, and dropped his crutch. He couldn't get it. He had to crawl all the way to the school office to get helpl It stands out in his memory as one of the worst moments of his life.

His memories of hospitals consist of nurses throwing him birthday parties, sneaking him candy and racing his hospital bed on wheels down the slanted hallways of the hospital when a poor volunteer made the mistake of leaving him for two minutes to check on something, not realizing he was going to 'push off' from the wall and go for a ride. (he says he did it twice, his mother says it was MULTIPLE TIMES).

His mother's worst memory of him at home, is his favorite, she desperately needed some groceries, he was napping and in a full body cast. She thought she could run to the corner market and be back in 10 minutes before he'd even wake up. She was wrong. She came home to find him in the front yard. He managed to wear out 3 body casts in his childhood.

I was an ornery child ..but when our kids start wearing me out ... I point out my husband's history to him and tell him ... I think they came by their energy quite honestly!

All that damage done to the body when he was a child, has left quite a legacy for him to deal with as an adult. The orthopedists think that had he not had polio, he'd have been about 6'2'' to 6'4'' (depending on which doctor you talk to). He is 5'3'' on one foot, and 5' on the other. Those are the measurements taken just a couple of weeks ago. He weighs 94 lbs. He is very large boned.
His kyphoscioliosis is quite severe, and causes significant pain. The pictures we have don't quite show the severity.


but, you can kind of get the idea ...



His rib cage is the size of a young child's when you look at it from front to back. Side to side (shoulder to shoulder) it is the size of a man's. My guess, is when they fused his back, the rib cage was never allowed to expand. So, his lungs are quite compressed. As is, his heart, stomach and anything else that's in the thorasic cavity. (I know the thymus gland is up there, not sure what else).

Everything in his torso is being twisted, compressed and compromised in some form or fashion. Since he was in his 20's, the doctor's have encouraged him to 'do something' to lessen the severity of his problems. Physical therapy to increase the breathing capacity of the chest wall ... surgery to straighten the spine (they have not recommended that since he turned 30). Sleep studies to see if oxygen, CPAP or BiPap or any such thing would help. Stress test to see if his Afib is a dangerous situation for him ... COULD it cause a stroke? Or is his Afib just a function of his anatomy?

And ...everytime ... he is told to do a test, he agree's in the doctor's office ..and comes home ... and cancels the tests and responds to the stress that his body is under by doing the following activity.




I don't know ... is it depression? Fear? Stubborness? Did he just get his fill of medical procedures as a child? Is this just your typical male syndrome of invincibility and "nothing can happen to me therefore I don't really need all that stuff the doctor says I do'' bravado?

Or, is he afraid of them finding something ..and it not being fixable. Would he rather live with the discomfort and the unknown than the discomfort and the doom of the known?

My frustration is ... what if they do the testing and find something ..and they CAN HELP HIM!

MEN!

Odd Neuro Appt

Pearls and Dreams

My appointment with my neurologist started out on an odd note. Yesterday, I had a migraine. While trying to sleep off that migraine. I got a reminder call, to be at the doctor's office at 8:30. I hung up, woke up later thinking that was very odd. My appt wasn't till 9. By the time it really sunk in, it was too late in the day to call. I didn't have time this morning to call and ask AND make it to their office by 8:30 if that was accurate. So, not one to be late anywhere I go, for any reason ... I left ... and was there by 8:25.

The receptionist handed me paperwork. I looked at her funny and she asked me for my insurance cards & photo ID. I asked her why I had to fill out the paper work and why they needed the ID. She said, in an overly condenscending voice, as if she was talking to a 5 year old. "Well, we ask all new patients to fill out this paper work. We need your insurance cards to bill your insurance"
I looked at her as if SHE were the 5 year old and said "I'm NOT a new patient!"
She said "you've been here before?"
"yes, Dr. M has been my neurologist for quite a while"
Then she took back the paper work, apologised and kind of laughed and said "oh, you just need to sign in then."
I told her that he'd been my neuro for 13 years.
Suddenly, her and her deskmate had all sorts of questions about his personality, which I thought was hilarious. Was not about to answer them. But still found it funny.
In the end I told her the only way he'd changed over the years was the limp. I knew him before he'd had his first knee tumor (2 tumor's, and he has a permanent severe limp ...come to think of it, I didn't see his cane today!!!)

But we did commisserate about allergies and he asked me if I thought zyrtec D would help him LOL, I wonder if I've been his patient too long, this isn't the first time he's asked me for MY medical opinion, he more than once said I really missed it when I chose to not follow my dream to go to medical school when I was younger.

So, then, he did a neuro check on me. I told him I wasn't walking for him. He listened to me. (grin) He was kind enough to NOT check my reflexes, that has been so painful on my sore knee. I hope when they do the surgery in a couple of weeks, it fixes that!!!
Then he had me follow his finger. This is normally not a problem. It was HARD. I think I succeeded. He didn't say anything, but the concentration it took was unreal! Then he held his fingers off to the sides and asked me how many he had out. I looked to my right and then to my left and he pulled his hands to the center and said in a rather alarmed but somewhat amused voice
"YOU CHEATED?!?! Now do it again, right!"
So, he put up his fingers again.
I stared at his face, completely unableto see his fingers and said "TWO?"
He said "For a big wild guess ...you guessed right"

Ok, I've gotten the numbers wrong because of double vision before, but I have NEVER NOT seen the fingers. I've never even had the urge to move my head to look!! That was just plain weird.

He didn't say much about it. But, I know that if it happens again, it won't be ignored. I am do for my vision check. Actually, over due, bya bout 4 months. I just have been so busy with other doc appts, I've put it off. At this point, it will have to wait till I recover from knee surgery. I do hope this is just an MG thing. Weird.

We talked about my tremors. He was looking at the meds I take. I told him they don't bother me enough to medicate at this point. He said one way to tell if they are essential tremor's is if a drink of alcohol calms them down. I'd never heard that. I asked about my MG and the alcohol... he very shocked said "WELL DON'T GET DRUNK!!!! I SAID A DRINK! As in ONE drink, a glass, a shot ...not go drinkING!"
Which, that led us to what types of drinks ... I think if I try it, I'd have to go with Hot Buttered Rum. Except, it's too hot and humid right now to tolerate that. I'm just not a drinker. Maybe a wine here or there. I haven't had a drink of anything since long before my MG diagnosis. Before I got pregnant with Samuel.

Cute, now that my church leadership committee is discussing whether or not to be absolute tea tottlers or not (not a standard at our church at this time) .... I'm told by a doctor to take a drink LOL ... leave it up to me to be given the green light by my doctor's just when I'm being put into leadership in a group giving me the red light! Go figure.

I'm going to have to do some more research on the essential tremors and alcohol link ..any of you docs who read this blog .. send me any info you have!

Anyway ... we talked about my surgery and how my meds need to be managed. I told him that the ortho doesn't want to manage my MG when I have it done. He just smiled at that. He made sure they were admitting me not doing outpatient. I said yes, he said that my PCP would call him and as always, I'll not be able to walk or breath for a few hours, then the next day be fine and go home. Sounds like fun huh? lol

Then, I finally remembered to tell him I was getting a house through Habitat. I think he was a bit miffed that I was a year into the program and hadn't told him. whoops. But he was glad for me.
He reminded me to take care of myself and to not overdo it ..yea ... um ... Dr. M ..have you MET Me? Maybe I should have filled out the new patient paperwork after all?

Tales of an MD/PhD Student

Pearls and Dreams

Same Song, second verse ... different ending ... same pain ..

http://mudfud.blogspot.com/2005/05/spring.html
The more we tell these stories, the more they will be heard. The
more they are heard, the less stigma will be there. The more help can be given. The more grieving we can get on with ... the more we can reach out to share. Some day, the cycle has to stop.

Lovely Tribute MudFud!

WHEW!!!!!!!

Pearls and Dreams

Well, it appears that good news comes in three's!

Went to the orthopedist today. He was WRONG about my shoulder. I do NOT have a rotator cuff tear! YIPEE!!!!!
I do have a problem, I have arthritis that is putting pressure on said rotator cuff. BUT no tear, and no surgery would or could fix what is wrong! YAHOOEEE!!!

So, my big fear is relieved. No shoulder surgery! He gave it another steroid shot (which surprised me, it's only been about 6 weeks since the last one!) but in a different spot. He was going to give me PT but that didn't happen. Not sure why. I think because I started asking questions about my knee surgery.

One of the things I asked him was we forgot to discuss if he was truely going to do the surgery outpatient or admit me. He said "oh no! You'll be admitted!" I told him they'd scheduled me as outpatient. He said he'd tell my Primary doc, she'd be the one admitting me because he's not going to manage my MG. I said "ahhh, come on!" He looked like a deer caught in the headlights! "Um, NO, I don't think so!" I said "what's wrong, don't think you can?" He said "Um, nope, I'm afraid I'd kill you!"
I told him I could give him instructions.
He laughed and said "Yea, you probably could!"

He's still going to have my PCP admit me. My PCP will call my neuro over to manage my MG cause she won't manage my MG either.
Chickens! ;)


soooooo ... I am NOT going to be facing shoulder surgery. I might have to live with the pain. I can deal with that. Pain is normal for me. (ok, this is the second time in a week I've been told that arthritis is the cause of my pain and nothing surgical to be done for it LOL)

Loosing my range of motion, would be something that would have broken my heart. It would have meant the loss of yet one more dream & skill. Don't like pain. I am used to it. I can deal with the pain. I couldn't deal with the loss of the dream.

Pearls and Dreams

Pearls and Dreams

First, the good news ....

Last November, I was given a cholesterol test. I've had high cholesterol ever since I was diagnosed with Myasthenia, 13 years ago. Nothing I've done has lowered it. While, I thought my starving myself would have lowered it, I have learned, that not eating, will actually RAISE your cholesterol ..whoops. The last 2 years, I've worked with my nutritionist to lower my cholesterol, to no avail. The doctor's have really really tried to avoid using cholesterol meds, because they are so strongly contraindicated in Myasthenia Gravis. The problem is ... lupus can cause high cholesterol, and so can Metobolic Syndrome.
Last November, my numbers got so high, they could no longer not treat it with medicine, MG or not. My numbers were as follows:


Cholesterol 304 High (100-200)
HDL 41 (40-125)
Chol/HDL Ratio 7.41 High (0.00-4.44)
LDL 231 High (0-130)
Triglycerides 159 High (30-150)

Risk factor (ratio)
2x Average risk for women at 7.05

So, with numbers that high, they put me on Lipitor, within 4 days, I was short of breath. Within 8 days, I was having trouble walking and double vision was severe. If I had not been a long time MGer, I'd have wound up in the hospital, but since I've had it so long, I knew how to manage it on my own. (neurologist wasn't overly happy with me for making that decision on my own and telling him a month later).

In January, they decided that it was time to try me on another Statin drug. I had the same chance, but not an increased chance, of reacting to it. So, they put me on the Vytorin, which is mixed with another drug. I asked everybody and their dog to pray for me that my MG would not react to this medication. I knew that some myasthenics couldn't handle ANY statins, and other myasthenics could handle SOME statins and not others. I was willing to try a few and take the risks before throwing in the towel. This one worked. I've had quite a few charlie horses, but the CPK keeps coming back fine, when I stopped the Vytorin for a few days, the charlie horses didn't stop. So, the assumption is ..the Charlie horses are from exercise, lupus or prednisone. (I have a history of having charlie horses every single blasted time I get on prednisone, I always thought it was the high doses I was on, but I've only been on 5 mgs, now I'm on 2.5 going off for surgery, still having them!)

So, 6 months later ... my numbers are ...drum roll please :


Cholesterol 166 (100-200)
HDL 41 (40-125)
Chol/HDL Ratio 3.25 (0.00-4.44)
LDL 98 (0-130)
Triglycerides 87 (30-150)




WHOOO HOOOOOO

I'm a little bit miffed. I work my tail off for years trying to make my cholesterol go down by working at it, and nothing happens but the numbers go up, and I take one little pill and the numbers drop like a rock!?Oh well, at least they're down!

Bad news time.
My lab work last week showed another (grrr) UTI. This one is a very strong bacteria, the lab results tested sensitive to only 2 antibiotics. I have to take Cipro. Cipro and MG are known enemies. Not as bad as MG and Erythromyacin, (I'd have to be in the hospital to take Erythromyacin, I don't breath well on that class), but not well at all. So, I pick up the 10 days worth of Cipro from my doctor and I start it. The next day, I start to realize that double vision is starting. By evening, drooping eyelids are an issue ..growl. Thursday, shortness of breath kicks in. Thursday afternoon, I'm noticing fatigue walking up our 4 stairs. Oh joy oh joy. MG and Cipro, I hate this drug! I look at the lab results, it's sensitive to Cipro and vancomycin ... I can't take mycins! GREAT!

So, I go to the urologist today. He's not happy that I've been off the preventative antibiotics for just 6 weeks and have yet another infection. So, he's putting me on 3 months of macrodantin, if I get another infection while on it, or soon after, then I have to go through urodynamic testing again.(don't ask, but if your doctor recommends this testing, run for your life!!!!!)I ask him if I can stop the Cipro, because it's bothering my MG. He says that he can see it's bothering my MG, this is the first time I LOOK like a myasthenic (grr) but, it's important, this is a nasty bug and the Cipro is necessary, even if the MG flares full up and supportive measures are necessary (by that, he means ICU and respirator! Thank GOD I'm not that bad!) UGH! I'm just uncomfortable and dreaming about having trouble with my MG. I'm dreaming that things are as bad as they were pre diagnosis days. REALLY uncomfortable scary dreams. Out in public, falling, unable to move my legs and get up, or unable to get a fork full of food from the plate to my mouth, unable to chew, or swallow without choking (ok, so that one happens weekly regardless of how my MG is doing, that's my very first fatigue symptom to flare). At least the dreams are worse than the reality!!
At least the Cipro just causes a bit of discomfort and a reminder of just how uncomfortable MG can be instead of full blown Myasthenic crisis!!!!!!!!!!!!!!!!! I'm wondering if Cipro is causing my lupus flare I've been in for the last 4 days, too.

Tomorrow, my husband goes to his cardiologist to set up for stress test. He agreed today in his appt with the primary care doc, and then again, as soon as we walked out, started to say why he shouldn't be getting one ARGH!!!!

I go to my orthopedic doctor to have final appt before knee surgery & find out about my shoulder MRI ... ugh. Hopefully I will remember to tell him that we forgot to set the surgery up as 23 hour admit and it was set up as outpatient. They don't do me outpatient ... Myasthenia & surgery don't get along really well. (MG and life don't get along well!)

Umm I don't think so!!

Pearls and Dreams




>

American Cities That Best Fit You:

50% Honolulu

50% Los Angeles

50% Miami

50% New York City

45% Chicago

Which American Cities Best Fit You?

Don't like large cities, I have lupus ...so sun isn't good for me ... I said I need healthy air (so how does LA & Chicago fit in there?)

Details

Pearls and Dreams

Two weeks ago, I posted about the Mother Daughter sleep over, Beach party ... here's the picture of the flip flops that I made for the sample ones for the girls to see what they'd be making.


Hopefully, I'll get some pictures of the actual party soon.

I saw the breast surgeon yesterday. The pain is not actually coming from the breast itself, but from under the breast, right at the rib/sturnum ...not sure what it's called ... anyway, I have pretty significant costochondritis from the lupus, and that particular place is pretty bad... and it seems to be what is causing the pain, and it just happens to be 'radiating out' far enough to make me think it was the breast. WHEW!
She did still want to keep an eye on the calcifications, she said while they are certainly benign, and the chances of them changing are slim to none, until they've been followed for a while and they haven't changed, she doesn't want to guarentee they aren't going to change. Especially given the immunosuppression drug Cellcept that I'm on for the last 2 1/2 years and the 8 1/2 years of Imuran before that. The risk is slight for developing cancer, but it is still there.

Well ... my sweet, adorable, gentle natured youngest son has shocked the whole world today. He got suspended from school. It is possible to push him too far. A kid has been picking on him all year, but Bj hasn't told anyone. I guess, today, was just too much. And ... the kid started swearing at Benjamin, calling him names and swearing and well, Bj punched him in the face.

Since Bj has never been in trouble before ... EVER ...not even a little bit. The worst he's done is stare out the window in class ... they sent him home for the rest of the school year (4 days) and are freezing his grades where they are. It goes on his record as an excused absence not a suspension.

Benjamin is devastated. He can't believe he did such a thing. He is beside himself with worry about what others will think of him now. He wants to apologize to his teacher. He's already apologized to the other student.

We're not punishing him anymore ..he's learned a lot by this ... he's not making excuses, he's not justifying his actions. He's just heartbroken that he's done this and wishes he coudl start today over again.

I saw the GI doctor today. I am scheduled for an EDG in 2 weeks. UGH. He's going to do it in the hospital instead of in the office because of my MG. He is, however, going to knock me out (yea!)
It's been 5 years from my last EDG .. I'm supposed to get them every couple of years ... I hate those things. I'll be very interested to see how much the stomach has changed in the 4 years since I've stopped the bulimic activity. He thought I was being very open with him and talking 'freely' ... if he'd taken my pulse, he'd have known differently. My blood pressure, that is normally at 110/62 was at 150/95 ... slightly nervous! Not sure that you could call that talking freely! At least I appeared relaxed!

3 weeks from today is knee surgery. Joy oh joy.

Pk's Stand

Pearls and Dreams

Every year, I make a very strong stand ... we are not rescuing wild animals this year ... no lizards, no bunnies, no squirrels, no ducks, no turtles, no birds ... no nothing ... scroll down to see how effective my stand this year has been ...


















At least they could have been original ... look what my brother has for a pet!



Yes, I'm serious, those came from his own tanks in his own house.
No one has ever called my brother normal.

How a mother looses her sanity

Pearls and Dreams

A few weeks ago, I had two sons who looked like this



Then, I scheduled an appointment with the eye doctor, the eye doctor said "OH NO! PROBLEMS!" And a week later, I had two boys who looked like this




Now, here we are, a month later ... and for some mysterious reason, I have 2 boys that look like this again



Neither seems to be able to explain the mysterious differences in their faces, nor where the things are that will bring their faces back to the appropriate appearance.

ARGH!!!!!!

Mother's Day Post

Pearls and Dreams

Today, I'm going to post about being a mother, tomorrow, I think I'll post something about MY mom.

Tomorrow, in church, our worship leader is going to read "Welcome to Holland." She is going to dedicate it to certain moms. She asked if she included me, would it upset Benjamin. I said, no.

Then, she asked me to go copy it for her, she needed a copy to the pastor (her husband) and a pastor to the sound/light booth. The copy ..never made it to her desk. Not sure who was supposed to get it to her desk, but ..it didn't get there. So, I told her I could email it to her and copy it in the morning.

That made me go on a search to find it (not hard) ... but that also got me to thinking of my own trip to Holland. Before I explain, let me let you read what I'm talking about

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved.
*****************************************

When you look at that story, I can't say that my step off into Holland with Benjamin was totally unexpected. We'd planned our trip with Samuel ... and while it wasn't quite the shock of Benjamin ... he still wasn't healthy, and it still wasn't what we'd expected to find. When you start your parenting experience putting your 16 day old child in the hospital with pneumonia, strep throat and 2 ear infections ... your world starts to tip upside down. Then when you realize that you're sick, and really sick, and your body isn't recovering and going back to what it was before the birth ... the world is spinning out of control. The fact that the plane didn't land in Italy again, was no big surprise.

But just how far away from Italy this plane landed ..was a surprise.

I've posted before about just how special of a kid Benjamin is. How much joy he's brought to our lives. I've posted about my fights to get him the services he needs. I've posted my heart and my frustrations. But it is impossible to explain just how rewarding it is to be this child's mother.

Other's can say what they will ... his lack of skills in whatever area ... his TS, his OCD, his ADHD ... his headaches, his stomach problems, his dizzy spells or his seizures ... they can point to all those deficits all day long ..all week long ..all month long ... all year long if they want to. Nothing will change the fact that when Benjamin laughs, God's grace has been shown to me. I've posted this poem before, and I will probably post it again. Mother's day might be to honor mom's ..but the reality is ... without Benjamin & Samuel ... motherhood would not mean what it does. Special needs and all ... tics, obessions, infections, learning problems, giftedness ... from swamp plant to cactus ... being their mother, makes my mother's day far more rewarding.

A Mother's Heart
by Peggikaye Eagler

Every mother had Dreams,
Of a Child perfect and whole.
Every mother has Hopes,
For perfection, body and soul.

They told me you’re not perfect,
Sweet loving child of mine.
They told me that your learning,
Is taking too much time.

They tell me that your tests came back,
Showing problems and low scores.
They tell me that you have to struggle,
This hurts me to the core.

Every mother has dreams,
They tell me you don’t fit.
Every mother has hopes,
They say perfection you won’t hit.

But they don’t see what I see,
The smile that lights your face.
But they don’t hear what I hear,
Your laughter reveals God’s grace.

They don’t see what I see,
My child loving and whole.
I have hopes and dreams,
Because my child you are a gift from God
And you have a PERFECT SOUL.



© Peggikaye Eagler

Pain Tolerance

Pearls and Dreams

I want my sons pain tolerance. I don't want the other sensory issues he has to deal with that gives him his high pain tolerance, but I want his pain tolerance.

Wednesday, during PE, another child reached his arm forward and Benjamin's open eye was in the way. He got scratched.

It was a bit red, looked like allergy eyes, and he said it itched. He wasn't complaining, he thought it was funny. So ... I figured we'd watch it.

Thursday morning, he got up and his eye was matted shut, and the red was a little angrier, but, it still looked ... well ...so so, I figured I'd watch it and if it wasn't better by today, I'd take him to the doctor.

I sent him to school. I went to my doctor's appointment & then went to do my sweat equity at Habitat. I got home at 4:30 and looked at Benjamin's eye and went WOW! His eye was swollen and it was oozing and looked BAD.

So, I called our clinic to see if they had after hours clinic. (we haven't had to utilize that, so I didn't know.) They said no and suggested going to the ER and use the urgent care center. So, we did.

He told the triage nurse that it didn't hurt, but it itched. The triage nurse looked at me like Bj was nuts. I couldn't understand it either! So, given the severity of what we were looking at, the nurse put a 4 down on pain so it would get taken seriously & quickly.

We went back out to wait a while and finally got called back. (finally ... ha! It was all of 45 minutes, if you'd like to slap me for saying finally on a 45 minute wait in an ER waiting room, you're more than welcome to, I know how absurd that statement is).
We got taken back there, and a nurse who's known us for 15 years was there, and followed us back. (she wasn't our nurse *grin*)
His nurse did a vision check ... BAD BAD BAD.
Was he wearing his glasses? NOOOOOOoooooooo should he have been YESSssssssss (was he when the kid poked him in the eye? NOoooooooooooo)

So, we went into the exam room and the nurse starts to tease Benjamin about the eye & the glasses. I reminded her of them having pick orange plastic out of my eye on 4th of july when Bj threw a plastic airplane at me and hit me in the eye. The nurse started laughing and said "come to think of it, we've had all of your family in her with scratced eyse because of him haven't we?"

Oh yea! Me ... 3 times, my husband 2 times, my other son 2 times. This is Bj's first corneal abrasion.

So the doctor comes in. He's annoyed with me since it didn't happen that day and it's that bad. I'm trying to explain to him that on Wednesday Benjamin said it didn't hurt & it didn't look bad until AFTER school. It wasn't until Benjamin said "it still doesn't hurt!" That the doctor finally backed off. After that, he got a lot nicer to me and wasn't so rude.

He stuck the orange tape stuff on his eye and then looked at it in the black light and showed me what was there ... a HUGE scratch. Bigger than any scratch I'd ever seen. It was bigger than probably all the scratches he'd given us combined. It was huge! The kid must have caught it with his whole fingernail!

So, he sent us home with antibiotic ointment, said to keep him out of school today. Benjamin spent last night with my mom and today with my mom. Today is my mom's 66th birthday. So he had a lot of fun keeping her company & relieved me from a lot of guilt from being overly busy today.

He came home after school time and his eye looks like it did after school on Wednesday night, we're going to let him go to the 5th & 6th grade club activity at church tonight. A lock in from 6:30 to 11:30 ... it's the last blow out before the 6th graders get promoted to youth group (gulp) in a couple of weeks. Technically, since he had to miss school, he shouldn't be allowed to go to that ..but ... I'm thinking since he's had the antibiotics for over 24 hours ... and it's the last event ... it's just not fair to make him miss.

Today, I had an appointment with my eating disorder therapist & then had to go get my monthly blood test ... I'm 3 weeks late for that (whoops!). I also had my cholesterol re checked. It was 310 with bad cholesterol at 232 in November and it was 230 total in April when I had my stress test.
So ... we'll see if it's come down any more. If it hasn't, then they're going to up my Vytorin.

Then, I went back to Habitat for 3.5 more hours bringing my total to ... 286 of 450.

Habitat

Pearls and Dreams

We are now at 282.5 hours out of 450 to build. (500 to ownership).
(but that last 50 has to be put on your own house).

I am hoping to go back in for a while tomorrow. My plan is to hopefully hit 300 by the end of this month.

Still Going

Pearls and Dreams

I am no longer in Physical Therapy ... :( I have to wait till after surgery to go back. It was causing a problem with my MG ...so no one but me seems overly upset that I'm out of it.

I am still (with sort of approval) doing some exercises at home. (with sort of approval means ... I haven't cleared any of it with my neurologist since my last appointment that he saw me not walking right, double vision/drooping eyelids and not breathing all together correctly ... but that was a flare ... I think, so that doesn't count, I'll tell him at our next appt in 2 weeks ..if I remember, I have yet to remember to tell him I'm working toward getting a Habitat for Humanity house. Which, he's either going to be thrilled for me, or he's going to clobber me.

Ok ... soo ... on my own I am doing :

3 sets of 20 leg lifts
2 sets of 20 clams (ok, should be 3, but those things suck!)
3 sets of 20 lifts with my bent knee over the leg being lifted,
no idea what that's actually called. Lay on your left side, place right foot at knee of left leg, lift leg straight up into air ..that's how it's done.
2 sets of 20 straight leg lifts with me on stomach. (those effect the MG & walking probably more than any other exercise I do, if I do too many of those, I wind up falling every time. I suppose I should cut them out, but I think they are helping my hip muscles which aren't all that strong to begin with)

4 sets of 20 squats
3 sets of 20 squats agains the wall
3 sets of vectors ( I don't know who invented vector's, but they were not a nice person!)
balancing on one foot ...
up to 30 seconds on left foot and 25 on right.
started at 22 & 18, some improvement, not much for the lenght of time I've been working at all this.

It doesn't feel like enough, but the surgeon says it's enough to keep the gains I made in PT until my surgery June 2.

Grand Rounds xxxii

Pearls and Dreams


One of my favorite medical bloggers, MudFud, is this weeks host of Grand Rounds.

Check it out, see how the day in the life of a medical student might go, and learn a lot of very interesting and important information while you're at it. Make sure you get a good strong cup of coffee before you start ... you're gonna need the 'get up and go' to make it through that day!

My 5Q4 questions from Biscotti Brain

Pearls and Dreams

Biscotti Brain got my questions for me yesterday. I had to think about them. She thought they were easy. Funny, how we think we're asking easy questions and the person answering doesn't think they're so easy.
Ok, so here's my questions:

1. If you could give any gift to your husband, Don, what would it be? If you could receive any gift from Don, what would it be? I have been trying to decide all day if I was going to answer this literally or spiritually, decided to answer literally.
If I could get him any gift it would be a full blown set of fishing gear, complete with comfortable chairs and anything else he needed to make fishing more comfortable and do able.
For me ...either a cruise ... or a book membership with a christian book club where I could order the books and or Bible studies I'm interested in.

2. You have written passionately about the struggles you've had with your son's school board. If you could put into place any three changes in how they deliver services, what would they be?

This is a hard one, you'd think it'd be easy, but since it would effect so many children, it takes great thought.
1. I would want them to put on child advocates on STAFF that would attend meetings that would work on behalf of the child, not the district in making sure that the school was following the laws for that child's special needs. (not to go above and beyond, just to MEET those laws)
2. I would want the school to realize that we, as families dealing with these issues do not want to deal with these issues. We'd rather not have to NEED these services, so to make us fight for something we'd just as soon rather not have is the ultimate cruelty. I would want them to start to see what their jobs are with more compassion and less dollar signs.
3. I would want them to start early intervention earlier. Waiting till third grade to identify problems is not what the law indicates or implies is acceptable and to do so causes irreperable harm to these kids. I would rather see them putting a higher amount of children in special ed classes at a younger age and graduating them out as they get older than to fight the parents and wait until there is no other choice and then the child can never get caught up.

3. You have described some of the hours you've already put in toward your commitment for a Habitat for Humanity house (which I think is a wonderful organization, btw). What does you dream-home look like? What features does it have? What colours would you put inside and out?

My dream home. First, dream home comes with a maid. (grin)
The kitchen would have a cooking island in it and would be slate blue and grays with lighthouses and beaches for the theme.
There would be a 'sitting room' for Bible study, it would be all white, with a black piano, and one red rose. But all the furniture & carpeting would be white.
The family room would be warm and snuggly with a fire place and plenty of throw blankets around with soft comfortable furniture to sit and talk in. It would be near enough to the kitchen you could visit with the person in the kitchen if you wanted to.
There would not be a speck of purple anywhere in the house.
There would certainly be a pool & hot tub. With a wintertime covering for year round use.

The outside would be a very very light blue. With all kinds of flowers and shrubbery.

4. In reading about your life, your time here on earth has been marked with some serious loss. How have you kept yourself from bitterness?
Short answer : my mother
Long answer: I think it boils down to one day when I was 15 years old and I was furious with my real father. I'd spent MONTHS saving for a father's day gift for him. I mean MONTHS. I sent it to him and he sent my sister a birthday card and he wrote in the card "and by the way, tell Peggi thanks for the father's day present"
I was livid. Not only had he not thanked me personally, but he didn't even identify the gift I'd specifically picked out and saved for and worked for.
My 15 year old brain went ballistic and started to scream that I hated him. My mother grabbed me and told me that she never wanted to hear me say that again. She could not make me respect him, but she could insist that I BE respectful.
She showed me that my actions and my emotions are both equal of importance, but, they are separate from each other.

What I learned though ...is that they do effect one another.

Somehow, that insistance caused me to step back and look at how I reacted to the situation and every situation since. How I react, and how I feel, and how I let it effect me does not have to be all knee jerk reaction. Just because a situation is painful and I experience something that is not fair, does not mean that I get to react with anger and bitterness. I have to step back, look at the situation, evaluate it, react with respect ...toward a person, or situation, or God.

When I step back in evaluation, then that gives God time to show me what I need to learn in the situation and the growth that I need to gain. It isn't easy, and is often painful. But far less painful than allowing the bitteroot to grow.

5. What one thing in the world brings you the most joy? How can you get more of it in your life?

You know, 6 months ago, my answer would be different than it is today. 6 months ago, I would have told you that it was just singing and worshipping and being in the presence of God. I couldn't imagine a higher joy.
Then, I went to a children's ministry planning team where a goal was presented for growth ..and that goal included stepping out of where you are ... and not just being content to give, worship, tithe and serve. But to mentor and take someone along with you. To actively persue decipling another in their christian walk.
Well, I was meeting a lot of the spiritual goals presented ...except that last one ... I was stopping at myself and I thought it was enough and I couldn't imagine a greater joy than just worshipping.
Until I started Pipp Jr and stood in a circle of prayer with 14 little kids as they prayed for the church leadership.
Until I started doing on one one descipleship with a friend who wasn't raised to study her Bible as I was, and I see her 'getting it' as I pass skills of study on to her and she realizes she's just as capable as anyone to pull what she needs from the scriptures.
Until I gave the devotional the other night and saw the looks on the faces as the women (more than the girls) understood what I was saying.
Until I realized that just serving isn't enough, but serving and desciping, serving, descipling and worshipping ...
How do I get more joy? Keep going ...pushing the box further open, stepping out of my comfort zone in obedience even when I'm afraid. Remembering that my center is His presence, but he wants me to share that experience, not just to stay there in isolation, that's how I will get more joy ..which is something that is hard to fathom.

Pain scales and daily living

Pearls and Dreams

A few days ago, Madhouse Man, blogged a rather funny blog entry about going around the country and being the ER Residents worse nightmare.

While he meant it to be funny, and it was in fact, hilarious, it really got me thinking about the pain scale and other health indicators that doctors tend to look at, that people who deal with chronic illnesses may or may not be typical in how they 'present' themselves to their doctor. So, I've decided to write a letter to my health care providers.

Dear Nurses, Physical Therapists & Doctor's,
First, I want to say thank you very much for everything that you do for me. I do understand that your job is hard, and when you throw in a complicated body like mine into your day, it makes your day that much more difficult. I appreciate all the thought, caring and work that you put into helping to make me the healthiest me I can be.

What this letter is about though, is I want you to look past what you see for a moment. I need you to remember that sometimes, even if I'm in your office, I get tired of being sick and tired. If you ask me "how are you?" I just might answer "I'm fine" out of sheer habit, or out of sheer stubbornness and refusal to be anything but.

I might be laughing in spite of pain that would have a healthy person in tears. When I say "This hurts here." I don't mean, "this hurts a little bit" I mean "THIS HURTS TO HIGH HEAVEN AND BACK AND IS INTERFERING WITH MY SLEEP AND MY FUNCTIONING"
I do not bother you with annoying pains. I do not say anything about pains that are chronic that do not keep me from doing anything or do not wake me up at night. I do not complain just so that you can write it down in my medical file or have you feel sorry for me.

I think most of you know this about me. I think you take me seriously, but forget sometimes I hide behind that smile. I don't think you ever think I am being frivolous, but I am not sure that you understand that I am not being up front because I am tired of it all.

I can't complain about every thing that needs to be taken care of or treated. I can't tell you about everything, there isn't enough time in the day, or enough treatments in the world, I have to prioritize ... And I know that there are times when things come up, later than you'd like, that you'd wished I'd said something earlier.

But, you need to understand, I already feel like I am forever and always complaining and the cycle never ends. It is fatiguing being chronically ill. It is wearing emotionally to have to be on my guard for conditions that must be taken care of. I just want it to stop and to not be something that has to be mentioned ... So I hope it will go away .. And I hope ..And I hope ... And I hope ...Until I have no choice. That's when I tell. Or, one of my other doctor's specifically asks a question that brings it out.

There are a few things you need to know about me, if you don't already:
1. I never feel good physically.
A) I always hurt: my hands, elbows, shoulders, feet and knees have not NOT hurt in over 10 years.
B) I never have the energy I should have.
C) At best, I feel like I'm either coming down with the flu or getting over the flu.
D) I refuse to give in and I am going to enjoy my life in spite of the pain, in spite of the fluey like feeling and in spite of the fatigue. So just because I'm smiling and laughing and having a good time, does not mean I'm feeling good ... It means I'm ignoring my diseases.

Here's where it gets hard and what I need you to know. I still need to be treated. I hate being sick and I would rather come in and have a nice cup of coffee with you and visit about anything than talk about what's going on with my health. I like talking things of medical nature, so when you start explaining things to me, sometimes I forget it's me, and just get into the discussion ... You may think I'm adjusting to the news ok. I'm really not listening ... I'm learning it as if it doesn't even apply to me. I'm learning it as if I was in my biology class and learning something abstract and unrelated to my life.

You have no way of knowing any of this. You all think I am such a compliant, cooperative patient. Easy going, and absorbing the knowledge. You have no way of knowing that I am on disconnect half the time. I don't know how to get past this, but I do know, I am not the only chronically ill person out there like this. I do know that many of us play down our symptoms. As many things as we complain about, as much as you hear ... There is so much you don't.

Somehow ... We need to get on the same page. The problem is, I'm not likely to open up and you have no way of knowing all this unless I tell you.

Sincerely,
Sick and tired of being sick and tired