Dr. Suess

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


Sunday, February 27, 2005

Weekend church activities

Pearls and Dreams

Ok, inspite of my husband being in the hospital this weekend, I had a very active church weekend, and ... I felt the best way to keep my sanity in tact, was to follow through with my committments.

Friday Night, I went to small group as usual, only this time, I was facilitating it. Something so far out of my normal activity, so far out of my comfort zone ... I was sure I was not going to get through it.
Tuesday night at my Habitat class, I'd invited one of my class members, I'd TOTALLY forgotten I'd invited her, so when she walked in, I was shocked. We had a smaller than normal group, but more than we'd had the week before. I started out with an ice breaker that I'd made up myself ... and it went pretty well. In the Purpose Driven Life, Rick Warren says that we have each been given a SHAPE (spiritual gifts, heart, abilities, personalities, experience) and then he talks about all the people who were 'misfits' before God called them into his service. I made up 5 questions relateing to SHAPE and then the 6th question of "what Biblical misfit do you most relate to and why?"
I got 100% participation ... including from the coffee shop owner (church member who hasn't been participating in our small group) AND my friend from Habitat!!!!
They all laughed and had a good time. Then we watched the Rick Warren video, then we broke into groups, I broke them up, we had 8 females, 4 males and made the males go into one group, and devided the two female groups ... I, sigh, behaved myself and split my best friend and I up, which really impressed our associate pastor with my maturity (grin)
We then had prayer time ... prayed for Don, for my knee which is REALLY REALLY hurting, I'm having a lot of fun in physical therapy, but it's not giving me a whole lot of relief. I'm loosing hope in that 2% chance that it'd save me from surgery.

When we broke up, the associate pastor came up to me, and she gave me a big hug and said "You did GREAT! You're a natural and I really know you're headed to this being the norm for your ministry!"
Um ..thanks for the complement ...now let me go back and hide in my nice quiet little music office where I mess around with sheet music, not people!!!!

Saturday morning, our church was putting on a state wide childrens ministry conference ... I helped the registration table. That's all I was signed up for, but on Thursday, I'd agreed to be an all day gofer. On Saturday, I backed out of the all day gofer because of Don being in the hospital and just did what I'd originally committed to.
90 minutes of signing people in, helping them register for their break out sessions, greeting them and telling them the plan for the day and then I was done.

Off to the hospital to visit Don then back to the grocery store to pick up sherbert & punch for today's ministry fair. Back to the church to put it in the church freezer to keep my teenaged monkey's er boys out of it ... and people were still milling around as the last session was settling in.

This morning, get up, put my hair in pig tails, put on the orange red and yellow tye dye kids ministry tee shirt, flowere flip flops, hawaiian hat and flowered lei and off to church.
Ministry fair was coming after church! I woke up late. I normally go in at 9 so I can be there to help the worship team with any gofer stuff ..but I didn't wake up till 9. Oh well. I'm sure they understood. THey saved my job for me too (grin) I wonder if Carla knows how much that means to me that she didn't just do it, but that she knew I'd do it for her when I got there! :)

During Sunday school we helped to get things ready for the ministry fair ... I learned soemthing new ... there is a reason they put fresh pineapple on the list of foods to avoid when you're latex allergic ...after cutting 1.25 pineapples from Hawaii ... my hands were red, splotchy, raw and swelling ... and well ... I'm allergic to them. My ears itch, my throat itches, I have a mild case of hives from the 5 to 8 slices of pineapple I injested. I should have listened ...
So, add fresh pineapple to my list of kiwi, strawberries , latex ... why doesn't canned pineapple react??????/

Then, I ran up to the kids ministry wing. This was the first week of PIPP JR ... the prayer ministry I talked about a few weeks ago. I went from class to class to grab the few kids that would be participating. Shock of all shock ...and I had TWELVE kids who feel strong enough about praying for their leaders that they're willing to step out of what's normal to pray outload for their pastor!!!!!
how cool is that!!!! 10 of the 12 prayed out loud!! Without prompting!! My son, and my best friends daughter were the two hold outs. BEnjamin,, has a shy streaak in him, his OCD kind of paralysis him in these situations, he'll be ok

Then the ministry fair ... we served sherbert/lemon lime soda in dixie cups with umbrella's at the kids ministry table and got 6 new recruits. I don't know how many new recruits the youth group got .. I know they got one ... me ... as a praayer warrior lol


It was exciting to see all the different ministries the churhc is invovlved ... in cluding our small groups, the habitat home, the missions, the music, kids , youth .... and I'm in sooo many of them ... now wonder I'm tired all the time and a happy tired at that!!!!!!!!

I'll try to post more later.

It was a good but utterly exhausting weekend.

Double posting ..so I'm fixin it!

I'll be editing the above posting for the errors (like praayer warrior) later ... I wrote that last night AFTER taking my ambien & darvocet. I also Called Deneice in California (The Journey) to check on her ... I think I fell asleep on her!!!!!!!! If so ... sorry D!!!!!! I woke up two hours later with the phone blaring in my ear. Poor girl, it's not your company D... honest, it's not!)

What is it with MEN??????

Pearls and Dreams

Don must be feeling better, because he's complaining about the testing that Dr. S & the cardiologists are ordering. They've ordered all these tests in the past, and he's cancelled them saying "she can find out all she needs to know from a blood test"

Well, ok, except, if that was true, then all these test would never have had to be developed. He keeps saying his heart is perfectly normal and having atrial fibulation is a normal heart condition that doesn't need to be worried about. As long as you take the meds, then it's no big deal. The fact that the doctor has explained to him a million times what CAN (but won't necessarily) go wrong with a/fib ... he's not believing. "My heart is normal, it's no big deal, I have a perfectly normal heart why are they doing all this?"

BECAUSE YOU HAVE ATRIAL FIBULATION & MITROVALVE PROLAPSE!!!!!
Found out yesterday, when he had his teeth pulled last month, he didn't take his antibiotics, because he felt it was unneccesary because he has a normal heart.

I don't know if his heart stuff is truely related to why he's so sick right now, I kind of suspected it was when they put him on the monitor and won't take him off, and are giving him a potassium drip(IV) and they've got a cardiologist coming in 2 to 3 times a day to talk to him.

He's going to drive me to the brink of insanity ...ok ...he's already driven me to the brink of insanity, he's going to push me over ...will Mad House Man doctor be there to treat me when I get there???????

Saturday, February 26, 2005

Hospitals & Rest

Pearls and Dreams

Last weeks Grand Rounds talked about someone's wife being in the hospital and not getting any rest. First thing my husband said when I got there today was "Why don't they let you sleep here?"

HA! Not a chance!

Last night they were taking his vitals every 2 hours. They came in and drew blood 3 times. They gave him a breathing treatment every 4 hours. (not coinciding with vitals, or blood work mind you) and they came in and weighed him ... either he's lost weight, or the hospital scale is lower than the doctor's office. The hospital has him at 92 lbs!!! That's a 6 lbs difference! He's still wearing his jeans too (why? I've not got a clue! I could never sleep in jeans).

The did a CT scan on his lungs today. They have him on a potassium IV, he says it's just preventative ... I'm not sure about that. I don't think they give potassium for prevention, I'm pretty sure you'd have to be low on potassium before giving you a postassium IV!!

They're going to keep him over the weekend, he's going to have a stress test on Monday (he can't physically do the treadmill, so they're going to use some kind of medication, not sure which, my lack of medical training is really rearing it's ugly head this weekend!!!)

I am worn out and tired. I'm home for a few minutes, blog checking & sticking a roast in the oven for the boys for dinner, then I'm going to nap. After the boys eat dinner, I'll head back up there for the evening.

I hate being in the hospital, my mom and my husband have been telling me for years that they think it's harder to be the family than the patient, which always made me mad (especially when I was in ICU in Myasthenic crisis) but after mom being sick and in the hospital last October for 4 days ... and now Don ... I've come to a conclusion ... they're right. It's harder to be the family of the patient than the patient!

Goodnight.


Friday, February 25, 2005

Abbreviated for a bit

Pearls and Dreams

If I appear to be absent for a while, I probably am. My husband was admitted to the hospital today, with pneumonia. He has only a 45% lung capacity to start with, so this is not good.

I was not there when the doctor's came by, so I'm not totally sure of what is going on, they called in a Cardiologist. I'm totally confused as to why this is. He could not answer me, the nurses would barely acknowlege my presence ... so I wasn't able to ask.

He has atrial fibulation & mitrovalve prolapse ... I'm wondering if this is acting up, or if ... this is the cause of the pneumonia, can heart problems cause pneumonia, or can pneumonia cause his heart to act up?

I hate not knowing what's going on when it comes to medical things. I left the house at 7:30 this morning, and just got home (11:30 pm) and I don't have what it takes to research it right now. So if anyone knows ... please feel free to enlighten me, on comments or in email. (PeggikayeE@aol.com)

Side note, Dr. S called with my lab work today, my WBC was elevated, 18 ... I guess it's supposed to be 11??? She was shocked. I think she was supposed to call in an antibiotic, but I forgot to go by the pharmacy.
My insulin was 67.9., it's supposed to be under 10. I was diagnosed with insulin resistance in December, it was 57. I started on Fortamet (the med making me sick) 3 weeks ago ... I'm following my food plan ...what's the deal?????????

I've insanely allowed my 15 year olds son's best friend to spend the night ... am I stupid or what?

Thursday, February 24, 2005

More Pictures

Pearls and Dreams

donandbjchristmas

Don and Benjamin Christmas I think 1999 scroll down to next entry for description of how the polio effected Don.

2pksnose


That ugly redspot you can almost see is where the skin cancer was
Sharkelephant3

This carving of elephants was given to me by my good friend Ronda, it's made out of sharks cartilege. She bought it while on a cruise in Cozumel Mexico.





Test ... adding photo?

Pearls and Dreams

2NewspaperonDonschest Newspaper & Bear 2 or 3 weeks old crawling on Don's chest. Yes, Don's back is as crooked as it looks,he's laying as flat as he can lay. Actually, this picture, all pictures, don't quite show the severity of it, he'd have to have his shirt off for the severity to show. He'd clobber me if I tried that. He had polio at age 3, and spent several months in an iron lung. He's 98 lbs. He's 5 foot 4 on one foot, 5'0'' on the other. Had he not had polio, he'd be 6'4'' (according to the orthopedic surgeon we saw to see if the displaced spinal cord in his neck could be taken care of). His lung capacity is below 50%. He should be on oxygen, he'd feel a heck of a lot better, but he's stubborn ..refusing to believe it will help ..go figure. The kittens ... the gray one is Newspaper, the black one is Bear, their mother's name is Donut. Below is one of the kittens Aunt Sugarfoot sitting in Don's lap, and Don is sitting as straight up as he can sit.

2sugarfootwantsattention

Wednesday, February 23, 2005

Suggestions wanted

Pearls and Dreams

If anyone has any suggestions for dealing with side effects of Fortamet (metformin/glucophage type medication) please please please speak up!!!!! I went up to 1500 mgs on Monday ... my stomach won't stop being queasy, my head hasn't stopped hurting ... I feel gucky all over ... icky ooky ick!

I have to go up to 2000 mgs on Monday, right now, I can't even imagine that! UGH!

I had a post I was going to do tonight, but my queasy tummy isn't going to let me think hard enough.

Flip side, at the doctor's office yesterday ... I was down in weight again, still just a bit, but that makes a full 30 lbs ... exactly ..since September!
In the whole time, since I was 14, I'd never taken more than 5 weeks to loose 30 lbs. So, taking 5 + months to loose 30 lbs ...that is REAL progress ...
Maybe, just maybe, between having the insulin resistance diagnosed & treated, and loosing it slowly, it will stay off for good this time!

Tuesday, February 22, 2005

Grand Rounds

Pearls and Dreams

Several weeks ago, I stumbled across a blog (through blog explosion) that had a link to something called Grand Rounds. I found it facinating and since then, have been reading several blogs by doctors and other health professionals on a daily basis. It has been educational, and interesting to say the least.

As a patient, it helps me to see the other side of the issue of the health care system that I am so often a part of. As a person who tends to like the medical sciences, I find it very interesting to see the doctor's thoughts as they blog each day.

This weeks Grand Rounds, patients were invited to participate. So, I thought I'd throw my hat into the ring and post about my own pet peeve. So, while I was at my doctor's office this morning, having to deal with the exact person I'd blogged/griped about last night ... Grand Rounds was posted and sent me a link to add and so, my link is going up a bit late.

http://catallarchy.net/blog/archives/2005/02/22/grand-rounds-xxii/

So ... check it out!

Monday, February 21, 2005

Clinic controls

Pearls and Dreams

I have a doctor that I am absolutely thrilled with her quality of care. I couldn't be happier with the way she treats me, how she respects me, how she educates me about my conditions and the time she spends with me.
She has yet to give me any cause for questioning if she's the right doctor for me or not.

So, a friend called and asked if I'd recommend my doctor. I said, "Sure! But there is one thing you need to know, her staff is impossible to work with."

The nurse that checks me in, I have no problem with, except, she's not really a nurse, but a tech. Which doesn't really bother me, except the hospital/clinic doesn't tell you that, they just tell you her name, and you don't know you're not dealing with a nurse unless you ask.

But the one that IS a nurse, oh my goodness, she is impossible. She doesn't care, she's lazy and she is careless. In the last 2 years, there have been 4 times that my doctor has told me that she wants me to see a particular specialist, and the referral has never been made. My husband is still waiting, after 15 months for the referral to physical therapy to for his post polio syndrome.
I was told last July, that she wanted me to see a particular opthamologist ...every month, she has me come in for an appointment ..and every month, I tell her, I never got the referral, and every month, she steps out of the room to go tell the referral nurse to make the appointment. Every month, it never happens.
I see her tomorrow, and we will again, have the same conversation.
Last month, I was wheezing pretty badly, and she ordered a nebulizer for me. The nurse told the home health company that I only had medicaid. Not true, I've got medicare/medicaid with medicare being the primary.
Medicaid would not cover the medication from the home health, medicare would. Not only that, but medicaid gives me a limited amount of prescriptions a month ...6... I'm on 13, you add one more to that list that doesn't HAVE to come off that 6, and it's an unnecessary burden to the patient.

I'd take it personally, but I know it happens to others too. I've talked to others who use this doctor, and they have the same problems.

Last summer, I was trying to get into the new rheumatologist. The only one in town who accepts medicare/medicaid. She told me that the wait was 6 to 10 months. I called the clinic, they never heard from me, so I told my doctor, so SHE personally sent the referral with me standing right there. 2 months later, I have the appointment. I tell this nurse, "Hey! I got into Dr. W already! Two months, not too bad!"
A man standing right there storms out of the office. STORMS out.
Turned out ... it was her husband who'd been trying to get into Dr. W. for a whole year, and she kept telling him that the waiting list was just too long. I guess she's an equal opportunity offender.

What I don't understand is this ...my doctor has no choice in who works in her office, she works in a clinic and her staff is assigned to her ... so why do hospitals and clinics put up with people like this who continually risk not only the doctor's reputations, but the health and wellbeing of the patient? When are the doctor's going to be given the autonomy to be the best doctor's they can be?

So many times I hear friends complaining about their doctors, and I wonder how much of it is the doctor ...and how much of it is the insurance company ...and how much of it is their staff that they did not choose?

Legacy

Pearls and Dreams

Legacy
by Peggikaye Eagler

Her loving hands moved the yarn,
The needle going back and forth,
The verigated earthtoned threads,
Not everyone would see its worth.
From skeins of yarn in tight balls,
Spreads out with the love it shows,
The afghan keeps her legs warm,
Her heart warmed by the love she knows.

Her Great Aunt whose love transcends,
From generation to generation,
Her crocheting hands remind us,
The kind of love that builds a nation.
The afghan is now slowly aging,
My mother washes it with love.
She remembers her Aunt fondly,
Now in heaven's glory above.

The afghan, beautiful and brown,
So warm and soft and cozy,
Snuggling under it's warmth,
Thoughts of Aunt Nan's heart so rosy.
It's easy to remember,
The kindness of her sweet smile,
Feeling the love while touching,
Through every year, across each mile.

Some day I hope to gain,
The afghan my mother treasures.
I knew and loved her Great Aunt, too.
Her love could never be measured.
If you took out each stitch,
And measured the time she took,
It wouldn't be enough to match,
The love she had in just one look.

The future,we don't know what holds,
But our past is knitted in care.
To remind us of her great love,
Our hearts will never be bare.
Someday I hope my mom gives me,
The love in the shape of the thread,
To warm not just my heart and soul,
But keep me warm inside my bed.


© Peggikaye Eagler

Pearls and Dreams

Pearls and Dreams

Pearls and Dreams

Pearls and Dreams

Sunday, February 20, 2005

forgot to add

Pearls and Dreams

For me ... I don't take the plaquenil ... because of the myasthenia gravis, the rheumatologist said that he would not use plaquenil in the absence of clear organ invovlement, and severe sunburn with 'funky rash' one time is not enough to justify the MG risk of plaquenil.

I take 5 mgs of prednisone.
Either Celebrex or Bextra
and the Cellcept I take for the Myasthenia is also for the lupus. (that's handy huh?)

For my next posting about the medical stuff I face ...
I can post about ...
let's see
my kids and tourette's syndrome, OCD, ADHD or Hypogammagobulinemia (genetic immune deficiency)
or I can post more about the eating disorder
or I can post about my husbands battle with polio and post polio ...
any requests?

I think I've learned that educating others, is one way I cope, if I can help someone learn about it, so that when they meet someone, or find out they have a loved one with it, they better understand the disease/condition themselves, and thus, have more empathy.

Another FYI post

Pearls and Dreams

Ok ...one on comment, 3 on email have said to please post about the lupus ...so I will.
The most important thing to remember is that this is how the lupus effects ME and every single lupus patient is different. In the Myasthenia Gravis world, we call ourselves "snowflakes" because no two myasthenics are alike, and I believed that, till I found out about the lupus diagnosis and started to educate myself. Myasthenics come far closer to fitting into a stereotypical pattern than does a lupus patient. So, that being said, I'm going to start with the diagnostic criteria, then talk about SOME of the medications/treatments that are used, then I'll talk about how the lupus has specifically effected yours truely ... IF I get tired ... I just may hit publish mid post, and leave you hanging, and finish it tomorrow.

American College of Rheumatology
The 1982 revised criteria for classification of systemic lupus erythematosus

Criterion
Definition


1. Malar rash
Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds

2. Discoid rash

Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions

3. Photosensitivity
Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation

4. Oral ulcers
Oral or nasopharyngeal ulceration, usually painless, observed by physician

5. Arthritis

Nonerosive arthritis involving 2 or more peripheral joints, characterized by tenderness, swelling, or effusion

6. Serositis
a) Pleuritis--convincing history of pleuritic pain or rubbing heard by a physician or evidence of pleural effusion
OR
b) Pericarditis--documented by ECG or rub or evidence of pericardial effusion

7. Renal disorder
a) Persistent proteinuria greater than 0.5 grams per day or grater than 3+ if quantitation not performed
OR
b) Cellular casts--may be red cell, hemoglobin, granular, tubular, or mixed

8. Neurologic disorder
a) Seizures--in the absence of offending drugs or known metabolic derangements; e.g., uremia, ketoacidosis, or electrolyte imbalance
OR
b) Psychosis--in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis, or electrolyte imbalance

9. Hematologic disorder
a) Hemolytic anemia--with reticulocytosis
OR
b) Leukopenia--less than 4,000/mm<>3<> total on 2 or more occasions
OR
c) Lyphopenia--less than 1,500/mm<>3<> on 2 or more occasions
OR
d) Thrombocytopenia--less than 100,000/mm<>3<> in the absence of offending drugs

10. Immunologic disorder
a) Anti-DNA: antibody to native DNA in abnormal titer
OR
b) Anti-Sm: presence of antibody to Sm nuclear antigen
OR
c) False positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilization or fluorescent treponemal antibody absorption test
d) Positive finding of antiphospholipid antibodies based on 1) an abnormal serum level of IgG or IgM anticardiolipin antibodies, 2) a positive test result for lupus anticoagulant using a standard method, or 3) a false-positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilization or fluorescent treponemal antibody absorption test.

11. Antinuclear antibody
An abnormal titer of antinuclear antibody by immunofluorescence or an equivalent assay at any point in time and in the absence of drugs known to be associated with "drug-induced lupus" syndrome

--------------------------------------------------------------------------------

* The proposed classification is based on 11 criteria. For the purpose of identifying patients in clinical studies, a person shall be said to have systemic lupus erythematosus if any 4 or more of the 11 criteria are present, serially or simultaneously, during any interval of observation.

Tan EM, Cohen AS, Fries JF, Masi AT, McShane DJ, Rothfield NF, et al. The 1982 revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1982;25:1271---7.
**************************************************

Medications used to treat lupus are typically an anti inflammatory, Plaquenil (anti malarial), and prednisone are the first line of defense in lupus.
If the lupus invades an organ, especially the kidneys, then they will go to the 'big guns' the immunosuppression drugs (the ones that are standard of care in Myasthenia Gravis). Often, Cellcept, Imuran, Methodextrate, Cytotoxin, or Cyclosporin (the latter not used as frequently in lupus as in Myasthenia Gravis).

Lupus patients are encouraged to get a good balance of exercise, rest and nutrition to best take care of their body. Not enough exercise, and the joints stiffen and deteriorate faster than what is necessary.

Treatments like plasmapherisis and IVIG are not typically used to treat Lupus, but they ARE used.

**************************************************

Starting with the criteria & my own case of lupus ...
I have :

Photosensitivity ... burn way too easily (did not happen before lupus... before, I burned slightly, then tanned darkly) Last year, I was in the sun for 45 minutes and had on 75 SPF sunscreen, applied twice ... and still burned and it took 2 weeks to heal. Unfortuneately, while I had the burn, I had to go see my neurologist who happens to work on the same floor as my dermatologist. I had this horrible burn as I passed my dermatologist in the hallway ... he, was not amused at his fair skinned, blue eyed, lupus patient on cellcept with a very very bad burn. So much so, he remembered it when he saw me SIX months later!!!!!!
Slight funky rash with sunburn.

Oral Ulcers ...this is a toughy. I keep getting them and keep getting them and keep getting them and keep getting them ... I just about get them all healed up, they're almost gone and wham! they start back up again. They can be treated with gargling Milk of Magnesia, using chloreseptic or an Rx'd mouthwash ... but I haven't found a way to prevent them.
The rheumatologist explained the M.O.M. working like this ... the antibodies causing the lupus, are attacking the mouth, which causes a build up of too much acid in the mouth, that causes the oral ulcers so often seen in lupus. The M.O.M. helps to rinse away the extra acid, helping the sores to heal faster. Whatever it does, it works, it helps, and nothing else had ... The chloreseptic helps with the pain ...kind of. (he did say do NOT swallow the M.O.M. or your bowels would be working overtime!) I also found, that it works as a great mouthwash rinse .. brush, floss, rinse with that and you STILL get little food particles pulled out from between the teeth!!!!!
weird! (that may have been TMI)

Arthritis ... inflammatory arthritis in my feet, hands, elbows, knees, sturnumn (sp?) (medical term for this is chostochondritis) not sure if my shoulders are involved or not. They get hot, red and inflammed ..but they don't always manage to flare with the rest of the lupus ...I think the shoulders have more to do with degenerative arthritis and hypermobile joints and tendonitis than lupus ... not sure on that one.

Pleurisy .. recurrent ... was frequent before I started prednisone last June, I've had 3 mild cases since then.

Blood tests (above they call it serum)
my Anti dsDNA is 454. Normal is 200 or below. 200 and above is lupus, 300 and above is severe.

my ANA is barely positive with a ratio of 1:160, homogenous pattern (1:40 and below is normal, 1:80 is considered positive, so, as you can see, 1:160 is just the next jump up.)

************************************************
those are my criteria symptoms and other things that get blamed on the lupus ...
dizziness
fatigue
headaches
fluish feeling
raynauds syndrome (hands and feet get cold, and won't warm up on their own)
*************************************************

Like the myasthenia, the symptoms can be better or worse on any given day. They can be better or worse IN any given day.

So, that is MY lupus in a very small nutshell ... anyone still reading?

Just for general information

Pearls and Dreams

I have had several emails asking me for more details about the myasthenia gravis, lupus, my other diagnosis's and their treatments.
So, this posting is simply for that purpose ...and if you're not interested at in this, skip down to my previous post about the Skeptic's Circle.

Myasthenia Gravis is a neuromuscular autoimmune disorder that effects the voluntary muscles (if you can control the muscle, it is effected).Antibodies have attacked the muscle receptors, plugging them up, & or destroy them so they don't get enough of the chemical the nerves send down from the brain telling the muscle to move. I have what is referred to as generalized myasthenia gravis, and at one point, was concered a 'brittle myasthenic', although, that was somewhat of a misnomer because of the severity of my eating disorder. I think I only had 2 crisis' that were truely myasthenic in nature, not eating disorder triggered myasthenic crisis'.
On any given day, I could have drooping eyelids, double vision, difficulty chewing, difficulty swallowing (don't serve me coffee that's too hot, by the third drink, it's going up and out my nose instead of down my throat where it belongs!)shortness of breath, my arms may have difficulty brushing my hair/teeth and may or may not want to hold onto a gallon of milk. Walking, can be very difficult on these weak days, as my quad muscles decide to give out before the calf muscles will. I have days every month, that I am dealing with most of these symptoms to one degree or another.

Myasthenia Gravis is treated by a drug called Mestinon, it is also used in surgeries to bring people out of the drug induced paralysis that is necessary for surgery. It gives the muscle a longer chance to absorb the chemical that allows it to move. There is a much longer explination of that ...that's the short version. The typical myasthenic will take between 240 mgs a day and 360 mgs a day, although up to 1800 is safe. the problem is, the side effects are so severe, few can go past the 360.

Myasthenia is also treated with immunosuppressants that are used in organ transplant patients. These drugs are powerful, high risk drugs. They carry the risk of frequent infections and cancers. Especially skin cancer (see my december posts as I came face to face with a melanoma on my face!). They treat the disease by lowering the immune system, which also lowers the bad antibodies that are effecting the body. Cellcept, Imuran, Cyclosporin are in this class.

Myasthenia is also treated with the use of high dose prednisone. Anywhere from 40 to 100 mgs is not uncommon for a myasthenic to be on. I'm really not sure why prednisone works for MG.

Myasthenia is also treated with IVIG, Intravenous Immunoglobulins. This is donated blood that has been treated so that it only carrys the immunoglobulins from healthy people. The theory, is to flood the system with health IgG's and the unhealthy ones won't turn on.

Myasthenia is also treated with plasmapherisis ... simple way of putting it ...when I had it several years ago, we explained it to our 7 and 9 year old kids as "Mommy is having her blood taken out, and her blood washed and put back in nice and clean"
It's a blood transfusion, where they remove the plasma and replace it with either artificial plasma or with donor, healthy plasma.

Myasthenia is also treated by removing the thymus gland. When I was diagnosed, they said it had a 60% chance of putting me into remission. While I was IN the hospital recovering from the transternal thymectomy, (like open heart surgery only they don't touch my heart) a new study came out saying 60% total would be helped by the thymectomy ..some would simply stop progressing, some have improvement, some go into remission, but not many.

Myasthenia gets worse with repetative motions, the more you use the muscles, the weaker they get. The weaker they get, the harder you have to work to use them, the harder you have to work to use them, the more worn out they get and a vicious cycle is born.


I'm on Mestinon, but a much higher dose than most, 600 mgs a day, I tolerate it very well, but I am also not symptom free even on this hgih dose.
I'm also on Cellcept.
I have used IVIG in the past ..too many side effects from feeling like I had the flu every month to aseptic meningitis 6 times in the 5 years that I got the treatment.

I liked the plasmapherisis ... 5 days, over, 6 months of help. My neuro sees it as far riskier than I do. I bow to his expertise.

My entire diagnosis & medication regimine is:
Myasthenia Gravis
Lupus,
Insulin Resistance
Asthma, Allergies, GERD, Pyloric Spasm, ED-NOS, hyperlipidemia
Mestinon 600mgs a day
Cellcept 3000 mgs a day
Prednisone 5 mgs a day
Celebrex 600 mgs a day
OR
Bextra 20 mgs a day
Ultracet
Zyrtec D
Prevacid 30 mg
Topomax
Ambien
Advair
Atrovent
Prozac 60 mg
Fortamet (metformin)
Vytorin

I think, I'll save the lupus for another day, if anyone is interested.

Saturday, February 19, 2005

Check it out

Pearls and Dreams


When I was in high school, I was on a debate team. My debate coach told me something that has stuck with me for the rest of my life.

"If you do not fully understand your opponants point of view, you cannot fully defend your own."

From that moment on, I learned that it is OK to agree to disagree with people. I learned that by having intelligent conversations with people that I don't necessarily share the same views, I expand my own horizons and strengthen my own point of view.

With that being said ... I am proud to give you the following link

http://oracknows.blogspot.com/2005/02/second-meeting-of-skeptics-circle-will.html
The Sceptics Carnival is a great grouping of blog entries dealing with : "some really good examples of skeptical blogging on intelligent design creationism, questionable medical claims, pseudoscience, credulous reporting of the "paranormal," and other topics. " (copied/pasted of of Orac's blog!)

While I do not (obviously if you've read my posts) support all the things posted in the Skeptics Circle, I do find there to be quite a lot of interesting, intriquing and valuable information.

If you are easily offended when someone does not agree with you, I don't suggest taking a look. If, on the other hand, like me, you like to learn as much about the world around you, even if it doesn't agree with your take on the world ... go have an interesting afternoon or evening of quite interesting blogging! And ENJOY regardless of your own personal views.

Just remember ... the views in the Skeptics circle only represent the views of each individual blogger!

Friday, February 18, 2005

Purpose

Pearls and Dreams

My church is participating in a church wide "40 Days of Purpose" with Rick Warren's Purpose Driven Life.

I've read it twice before. I've gotten a lot out of it ... including and not limited to ... God made me because he loved me and regardless of where I see myself ... HE sees me on the same playing field as the rest of his Creation.

This last week, was about being involved in the church. Protecting the nature of your church. Being non judgmental and realizing that if you have 10 Christians in a room, you'll have 14 different opinions on any given doctrinal issue... and that cannot be a reason to divide the church.

I am married to someone who ... for lack of better terms ... is the most judgemental and critical person I have ever met when it comes to religious things. He insists that you read King James Version (and not the NEW KJV). That you MUST believe as he does on end times (my church does not... I could care less).

Wednesday night, taking a church leadership class with my pastor teaching he mentioned that some people in the church take issue with his saying "The main thing is to keep the MAIN THING the main thing" and that some people really really get upset with him when he says that. He told the class that there are those in the church who disagree with him over translation, end times and changes in how things are done. I wanted to crawl under the desk, knowing he was talking directly about my husband ...he'd even quoted my husband word for word. I also knew, that no one else in the room knew it was Don that he was talking about but he and I, so crawling under a desk would tell more than he was telling ... he was trying to make a point. I realized how much he respected me at that point, that he felt safe enough in MY relationship with him, that he could use my husband as an example without fear of offending me. (he was right, I was not offended, just once again, embarrassed that here I am one of his biggest cheer leaders when it comes to accepting those who don't agree with me ... and finding unity in what we do agree on and agreeing to disagree on what we don't ... but I'm married to his staunchest critic and most judgmental member, who decided that he wasn't about to go to a church anymore where they obviously didn't know as much about God's word as he did ... he refused to go to Sunday Schools or Bible study classes because "I'm not going to sit there and be taught by someone who knows less than I do" well, he'd say that even when the pastor was the teacher ... HELLO?? Sorry, when you're 49 and you've spent less than half your life in church, and spent most of your life saying what churches are doing wrong and reading the Bible with the sole purpose of proving someone's doctrine wrong ... when you give no one grace or mercy but yourself ... how can you claim to know more than someone in the ministry for 20 years and active in church since early childhood ... with a doctorate degree ... and 20 years experience pastoring a church??????) ARGH!!!!!!

So, we're reading Purpose Driven Life, and it's talking about NOT doing or saying the things above. That we have to protect our church, we have to realize that not everyone will agree ... and that we have to agree on the majors and agree to disagree on the minors and let our Unity be strong and not torn apart by judgement and immaturity.

I keep reading this wondering how my husband can be reading the same book I am and still justify his actions & words. Tonight, in small group, he asked the group to forgive him ... that he had to stop tearing apart the body of Christ and look for common ground with them. He asked them to pray for him as he repented ...
He said that his pride and fear keep him paralysed and non participatory ...it's easier to judge than to be hurt again and he doesn't want to keep running and keep tearing apart the body but wants to participate ...

I don't know ..the whole small group was in tears and happy and prayed with him and all I could think of was ...this will last ... until the pastor says something that he disagrees with. Then I'm going to be right back in the place of fighting over what my place of worship is doing that isn't wrong that he percieves as wrong.

We'll see ... if he refuses to go to church on Sunday, then I'm not going to be able to believe a word of this, you have no idea how many times I've seen him 'repentant' only to see him throw it in my face later ... he's broken all my trust in him ... he's destroyed my love for him ... calling me names, cheating on me, and tearing me down ... the only reason I'm with him still is because I was too scared to leave. I don't have the heart to get my hopes up again ... only to have him call me a name or question my motives or to tell me that the church doesn't really know me or they wouldn't be letting me do what I do ... or to be insulted because I've been complemented.

Yes, I believe God could be working in him, I'm just too raw and too scared to believe it till I actually SEE the fruit this time.

Wednesday, February 16, 2005

Vytorin blood tests

Pearls and Dreams

Blood tests came back perfectly fine!!!

So ... they said to stop pushing it so hard in PT. If that doesn't let up, then they'll have me stop the Vytorin for a few days and see if that stops it.

Problem is, I went to PT and forgot to tell the Physical Therapist and let him actually UP my program (grin)
I'm wondering, if my muscles are just trying to adjust to all this, and that's why, and if they'll stop cramping up on me, or, if this is part of pushing it with having the MG & Lupus and it's gonna keep happening if I keep pushing.


10 minutes on the recumbant bike

20 step ups

2 sets of 20 squats on the wobble board

1 set of 20 squats against the wall

I did Leg presses today ... 65 lbs with both legs, 35 with the injured leg. 3 sets of 10 of each

5 minutes on the total gym

I had to tip toe over these cones ... 16 cones, up and back ... 5 times ..up and back count as one, on my toes OVER the cones.

Then he has this computer machine where I had to balance on one foot for 20 seconds and it registers how still I'm standing ... not good. I had to do it six times ... 3 eyes open, 3 eyes shut. THIS IS the exercise causing my charlie horses, I'd put money on it!!!


30 lbs on the leg lifts with both legs

15 lbs with just one ..but I had to do 5 sets of 6 lifts instead of 3
sets of 10, my legs just would not do it past the 7th one.

I did 20 straight leg lifts, and 20 clams

then he iced it with stim for about 15 minutes.



Tuesday, February 15, 2005

More Poetry

Heart of Lace
The mask that I wear,
Hides a wall of tears.
The smile shines bright,
Hiding shadows of fears.

You ask me, I'm fine,
But my heart cries in pain.
You hear my laughter,
Not the whispers of shame.

What I show my friends,
Is not what's inside.
What is shown to the world,
Covers well what I hide.

The mask seems so thick,
It's glued to my face.
The clothing of stability,
Covers a heart of torn lace.

Just how to unmask,
My coverings of show.
Just how to trust,
Is something I don't know.

Will I ever attain
Who I long to be?
If I'm hiding behind
A person who is not me?
© Peggikaye Eagler


Teaching Me
by Peggikaye Eagler

I wanted to say thanks,
For believing in my life.
For looking past my faults,
Praying me through my strife.

When all I could see,
As I looked into my mirror,
Was weakness and failings,
And a life, anything but pure.

You saw what I could not,
And saw what God said would be,
You insisted I look closer,
And revealed to me,what you see.

You told me you saw joy,
You said you saw a strength.
You promised I was loved,
Would be through life’s length.

Thank you for your love,
Encouraging me, not so much to change,
But to accept the person I am,
To meet myself within God’s range.

While I still tend to look,
At all the things I do and say wrong.
The Holy Spirit through you,
Is teaching me to see that
God In me shines strong.
© Peggikaye Eagler

Never ending

Pearls and Dreams

I know this blog was started about my journey in life ..which is dealing with many medical issues as well as being excited about the changes in me as I grow and mature into actual adulthood (just cause it took me 40 years to get here!)...

but sometimes I feel like all i post about is the medical stuff ..maybe it's because it's feeling like that's all that's happening?

I'm still in a great mood, excited ... I'll have to post on that stuff later today but right now my time is limited because I am off to yet another doctor's appointment!!!!!!

I called my doctor yesterday to tell her that I'd woken up every night over the weekend with charlie horses in both calves.
I started Vytorin 2 weeks ago. Since I have myasthenia gravis and I'd already had a bad reaction muscle wise to Lipitor ...
We were very cautious .but with a cholesterol of 310 ... you have to do something ... and I'd already done the diet changes and am already exercising to the max with my health issues.

So, I figured she'd just have me to a blood test, but they want to see me.
My right calf is sore today from the severity of last nights charlie horse.
Is ... this the reaction that all the commercials warn about? Report to your doctor any signs of muscle pain or weakness because it might be signs of a serious but rare muscle problem ....yada yada yada

or is this a reaction to physical therapy and am I simply working out too hard in Physical therapy????

Monday, February 14, 2005

My story & I'm sticking to it

Pearls and Dreams

It's Valentines day, so I'm going to post about chocolate.

I cannot vouch for the medical accuracy or scientific fact in this post, so it may be rumor, urban legend, old wives tale or just plain wishful thinking. But ... it IS stuff I've heard ... and it sounds good and well ... as a lupus patient ... it sounds wonderful and it's my story and I'm sticking to it!

Chocolate is a great food.
First, it is a legume ... it is a bean, cocoa bean.
Second, it has great anti oxidants and as we've all heard from the healthfood guru's ... anti oxidants prevent cancer, heart disease and all kinds of other ills.
Third ... chocolate is an anti inflammatory (most imortant factoid to the lupus patient in me) thus helping to relieve joint inflammation and pleurisy pain.
Fourth...chocolate releases a hormone giving us pleasurable feelings, so wouldn't that make it an anti depressant too?

Happy Valentines Day.

Enjoy Your Chocolate ... at least for today.

Sunday, February 13, 2005

Message to Myasthenics

Pearls and Dreams

To any myasthenics that might stumble across this blog ... when your neurologist tells you (and they will) that Nyquil is not a good mix with myastheni gravis ... listen to the neuro.

Dr. M ... you were right

Again.

Nyquil + MG = not good.

Where's my extra mestinon?

(after 13 years of dx ... I really should know better)

Saturday, February 12, 2005

What leader are you Quiz

Pearls and Dreams

Got this from Respectful Insolence blog (link to on the side)


If there is a name for my mood ... I'd be surprised

Ok ... I have no clue how to classify the mood I'm in. Physically, I feel like death warmed over. There are outside issues I'm dealing with that have my stress and frustration level at a high level (thank you very much Union Schools!) Add to that a lack of sleep (thank you medicaid for deciding that Ambien should have 'fixed' my insomnia by now and not approving it) a husband that is less than supportive (can we name that 'very draining person'?) and add to that questions of a drug reaction ... and I should be a real mess.
I'm not.
I am in the best mood. Frustration is there sure, but I'm so excited about other things happening, so grateful for other situations, so happy about just BEING who I am, the other stuff seems peripheral. Temporary. Not that I'm shoving them in the background and ignoring them (well, except for the husband situation, trying to ignore that one as much as I can) or slipping into denial, but I'm not letting them control me.
So, first, today, I'm going to deal with my concerns.
I be sick. I really really really should have called the doc yesterday. She's going to clobber me. I have her voice in the back of my head saying "I'm the doctor, not you. You have to let me treat you!" Then there is my neurologist's voice saying "Hi, I'm Dr. M, I went to medical school for 4 years so that I could learn how to figure out what is important and what isn't, so you don't have to" in my follow up appointment in December when he found out I'd had numbness in my hands and feet for over a year ... I hadn't told him because I figured it was just inflammation from the lupus, I'd read a lot about it on the lupus message boards, it's common, so ..made sense to me ...it's annoying, doesn't hurt, doesn't interfere with functioning ..so it's not serious. Well, he was alarmed. He was concerned it might be peripheral neuropathy, which IS serious. So, after torturing me with needles in an EMG ...we find out Peggikaye is right ... hmph ..he might have gone to medical school for 4 years, and been my doctor for 13, but I've lived in my body for 40. ;) (Dr. M, if you happen to find this blog ... I think you're the greatest doctor in the world! I'm glad this is the ONE time you were wrong and I was right, cause normally, you ARE the one that's right)
Ok, so back to the cold, or infection or whatever it is. My fever didn't go away overnight. My lupus fevers always do. So the fever is most likely connected to the red throat, painful ear, and stuffled up nose and funny voice. When I cough ...this gunky stuff comes up too ... whoops.
Next topic ... I have to scroll up to see what it is, :D
Oh, yea, Benjamin's school. After all that hubbabaloo over Benjamin's math this week ... his math teacher wouldn't let him take his math home this weekend to work on or get help from my mom (the special ed teacher of 22 years who specifically TAUGHT JUNIOR HIGH MATH) Geesh. In his IEP it is written ... any work not completed, that he did not get a C or above on, or that he is struggling too hard with the concepts on, he is to take home on Friday to work with his grandmother on the weekend. Um ... ok, so why is he failing? Where is the make up work?
The drug reaction one ... Vytorin. I had a lot of myasthenic trouble with Lipitor, and it was FAST, 6 pills and MG was rearing it's head, and 8 pills and I about wound up in the hospital. Had I been a less experienced MGer, I would have. Had I been less tolerant of Mestinon (symptomatic drug) I would have, but because I can almost double my dose of it (I take 600 mgs a day, I can take up to 1140 mgs before I even START to feel side effects.) I would have. So, my doctor and I ask my neurologist if Lipitor does that, will all the statins? He says ..maybe? Maybe not. But with as high as my cholesterol is (310 total, bad was 230) and my diet is appropriate and I'm exercising all I can ... we have to try everything we can. So ...
2 weeks ago today, I started Vytorin. A week went by, no problems. Yesterday, I noticed sitting on the couch, I about had a charlie horse ... hmmm. Didn't think much of it.
Last night, I was awakened 4 times with charlie horses. Now ... I don't get many charlie horses thanks to Myasthenia, the muscles just aren't strong enough to do it much ... when I was a teenager, in full blown eating disorder .... ok, clear up until the MG hit at 24 and any time I've been on high dose prednisone with the eating disorder ... the charlie horses have been massive ...but I don't have an active eating disorder, and I'm not on high dose prednisone (5 mgs) .
So, what I can't find on the web is the what KIND of muscle pain can Vytorin cause? You see the ads that say "report to your doctor any kind of muscle weakness or pain because this can be a serious sign of muscle damage " yada yada yada ... but are charlie horses what they are talking about? When I think of muslce pain, I think of aching, not cramping. They say muscle pain, not muscle cramps.
So maybe the charlie horses have more to do with my physical therapy on my knee than the Vytorin?
(am I trying to diagnose myself again? Told ya I always wanted to be a doctor)
Ok, I'm going to totally skip over the husband and ambien issue.
Now for the fun stuff. :D
We had small group last night. That is always a good time. Our small group is absolutely nuts. I think we're a group of adults who never outgrew being teenagers (with the exception of my husband who is a party pooper). Our small group is going over the book Purpose Driven Life as a group. This weeks topic was about fellowship and how relationships make a difference in your life. How it's important to have people who can tell you the truth, let you know when you're screwing up ... and keep you on the right path, but also have fun with, share good times AND bad times.
The prayer ministry with the kids is a GO. PIPP Jr. Starts up February 27th. Letters go home tomorrow morning! I am so excited. A bit scared. I'm stepping farther and farther out of my nice quiet little behind the scenes music office ... yikes. But I can't wait to hear the kids pray for the church staff. It is soo fun to hear little kids pray.
I am signing a song in church tomorrow. I am sooo not ready. After 25 years of signing to music, it is VERY hard to find a song I can't do ..and Carla managed to do it!!!! not only do I not have it memorized ...oh shoot, I should have that CD on ... ok, I do :D ... at least I can listen to it while I'm blogging. Anyway, not only do I not have it memorized, but it's 'wordy' and it's upbeat and complicated to sign. However, that being said, I have had a BLAST trying to figure it out ... finding a sign challenge after 25 years is really cool. I'm just not quite ready, not sure if I'm going to do it or not. We'll see. My CD is scratched ...gonna kill a teenager.
A week from Friday, I'm leading small group. YIKES. It's about service, and stepping out, and that God made us who we are and he doesn't expect perfection and he used imperfect people all through the Bible and we have to stop thinking we have to be perfect to serve Him or anyone else. Once again, stepping out of my comfortable little music office.
My book is going no where. Don hasn't gotten the old computer harddrive pulled out for Ed to pull it off onto a disk. Mom hasn't gotten me back the hard copy ..and the editor is sending me letters saying " We want to see it, proof read or not"
ARGH!

Ok, if anyone is STILL reading this blog entry, I must say, I am truely impressed!

Friday, February 11, 2005

Contemplation

Pearls and Dreams

To call or not to call ....

I've been on antibiotics 3 times all ready this year, it's only been 10 days since I finished the last coarse ..and that was 875 mgs of amoxil, and that followed a coarse of 2000 mgs of Augmentin. Well ... my throat is starting to hurt, my left ear hurts AGAIN, my nose is stuffled up again, my chest is tight, and my temp is 100.1ยบ . Now ...if this was not a Friday, I'd just hit the hay and say, I'll ride it out for a day or so and see what happens, but it's the weekend. If I get really sick, I'm gonna get blasted again by my doc who gets really tired of me diagnosing myself. (she keeps asking to see my medical degree (GRIN)) But really, with all those antibiotics, could it REALLY be a bacterial? Or is it more likely to be flu or cold? But then again ... I AM on Cellcept ..3000 mgs (immunosuppressant) and Prednisone 5 mgs ... so ... I guess technically ...
But then again ... it COULD be allergies and the fever could just be my lupus ... I've got swollen joints and plerisy, and costochondritis, and dizziness, and brain fog and insomnia and everything else I get with a lupus flare ...so the fever may have nothing to do with the sore throat & congestion stuff ...

I have been to 2 doctor appointments this week. Physical therapy twice, and I have physical therapy at 10 this morning ... I also have small group tonight ... I do not have time to be sick again!

This seems to be a running theme in my life ... I don't have time to be sick. Someone needs to tell my body that. It's not listening to me. (wonder if that's why I keep getting sick?)

So, is it bacterial, viral, or allergy + lupus flare?
if it's viral or lupus + allergies, it will do me diddly squat good to go to the doctor.
If it's bacterial, then I should probably go.

ARGH!

Educating a child, should not be this hard!

Pearls and Dreams

It's 4 something am ... and I'm up because medicaid doesn't see fit to give enough Ambien to get me through a month ...and my son's teachers can't see fit to give him an appropriate education ... the following is an email that I just sent off to the special ed director of our district. We've already had 3 meetings between us and the teachers this year ... one had : The Special ed director, the principal, the vice principal, the school psychologist, the school counselor, the special ed math teacher, special ed social studies teacher, the special ed english teacher, special ed science teacher , the typing teacher ...they thought I was coming to the meeting alone HA ... they had one chair for me ... I walked in with my husband, my mom (who taught special education for 22 years) and our children's pastor (who taught school for 9 years and had special education students in her classroom the whole 9 years). We came to very little agreement in the meeting, but did come to some kind of agreement that should have helped .. we've done our part ... but ..it's not helping one little bit ..why? Because the problem was not, nor has it ever been, Benjamin or his willingness to cooperate. All of the agreements made, were based on getting Benjamin to do more work ... (taking away his locker so he can't stuff homework in it and not bring it home ... total agreement of EVERYONE in the room was one of the things). We did need to find something for him, but until the teachers change the way THEY function ... nothing is really going to change, till they stop blaming my son ... it's not going to work the following is my email to the special ed director.
Dr. J
I am, once again, at my wits end and don't know what to do. I would call another meeting, but to what end? To have Don yelling at the teachers and the teachers yelling at Don? It is 4 am, and I cannot sleep, because I am so frustrated with Benjamin's school situation and I just don't know what to do. I am doing everything that I can do, but your teachers are NOT doing everything that they can do, and ARE doing things to make matters worse.
Three times this week, Benjamin has come home complaining that his Math teacher Mrs. S has refused to help him. He says that he asks for help and she says "We covered the first three problems as a class, now do your work." or "I showed you how to do it, now do your work" or "You should know how to do it by now, now do your work"
Today, she called my mother because Benjamin was not working on his work and was instead drawing on himself. (what happened to emailing me if they could not reach me by phone as was discussed in the meeting?) She told my mom that she had told him that he had been shown how to do the problems and should do them but he was saying he didn't know how, so he was 'choosing to write on himself instead.' We discussed in the IEP meeting that this kind of behavior is his version of shut down. when he gets overwhelmed, when he gets confused, when he doesn't know what to do, instead of an outburst, or getting angry ... instead of acting out ... he grabs a book, he looks out the window, he draws ... he has verbalized to her that he does not understand. It's FRACTIONS. How many kids have to be shown over and over and over and over and over and over and over again and STILL don't remember it? He has SEVERE memory problems ...both short term and long term, she has no basis to expect him to remember it from one day to the next. Yet, she refuses to give him the help he needs.
Top it all off, after calling my mom, she refused to let him take the assignement home because 'he needed something to work on while the substitue is there on friday'. So, she won't help in class, and he can't take it home to get help from my mom after she calls her to tell her he won't do it???
Benjamin's grades in all his special ed classes are D's and F's ..his science grade,(I think it's science) is a 33%. This is absolutely absurd. They have GOT to stop blaming Benjamin and find a way to MEET BENJAMIN'S INDIVIDUAL LEARNING ABILITY. I don't care that they have a classroom full of other students, I do care, but you know what I mean. The law states that you MUST meet the child's individual needs. You cannot just shove the blame off on the child because he needs more attention than they want to give him. Either give him a one on one aide for each of his classes, or get the teachers to do something to change the way THEY deal with him. MAKE THEM STOP BLAMING BENJAMIN. IT IS NOT THE JOB OF THE CHILD TO FIT INTO THE INSTITIUTIONS NEEDS ... it is the institutitions job to fit the childs needs. That is WHY the special education laws exist. There is no viable reason for a special education child to be failing!
Yes, the relationship has become contentious, but can you blame me? When a teacher mistreats a child the parents normally become resentful and protective.

I don't know what else to do ... calling a meeting won't work ... I've done that ... something has to give ... and Benjamin is caught in the middle and it is NOT fair! It is NOT Benjamin, it is NOT the Eagler family ...I can name names of people who have struggled with the special education at the 6th and 7th grade center ...who have had absolute NIGHTMARE situations ... my mother works at Huntington learning center where they have student after student coming in with IEP's and parents saying the teachers are not doing the job and blaming the parents and children. I know of other families who've had such bad experiences they've moved out of the district or taken their child out or homeschooled ... I don't have any of those options because of my health and financial situation. I can't send him to Town and Country because we don't have the money. I can't fix anything ... Union is my one and only option ... Educating a child is not supposed to be this difficult..

Peggikaye Eagler

Thursday, February 10, 2005

What a difference a day makes

A little over 4 years ago, my primary care doctor told me that I either went to an eating disorder clinic for an evaluation, or I found myself another doctor. Unwilling to loose this caring doctor who understood my health so well, I reluctantly agreed to go. I met with a therapist, who did the eval, and then the psychiatrist and the nutritionist. I was entered, without hesitation on any of their parts, into the outpatient eating disorder program at Laureate. The psychiatrist, a very kind man, Dr. M, but I was scared to death of him. I can remember walking into his office that first day and just wanting to scream, cry ... run ... anything ... I wanted out of there. I sat down on the couch, and crossed my arms, and my legs and answered his questions. Time would go on over the next couple of years, and I became a little more relaxed, but still very intimidated by this man. I have no idea why. Then came the day, when I was finally doing everything that I was supposed to be doing with my food (ie actually EATING it on a consistant basis), and I'd gone into the hospital for surgery ... and found that I'd gained not the 8 to 10 lbs that I'd suspected I'd gained ... but I'd gained over 25 lbs. I FREAKED OUT. I was ready to drop out of therapy, I was angry at my nutritionist (who'd talked me into doing 'blind weights') mad at my therapist, mad at the psychiatrist. They'd promised me that I'd never gain back the weight I'd restricted off. Here I was, doing what I'd told them would happen ... if I eat, I gain ... pure and simple. If I put in more than 500 calories into this body, the weight comes on. They had a conference with me, the first one since I was entered into the program. Dr. M told me that he thought it was a metabolic disorder. He was SURE it was a metabolic disorder and that my eating disorder was a psychological disorder, but my weight was a metabolic disorder that needed medical treatment. He couldn't prove it to me, it wouldn't show up in the blood work. I thought he was full of it. I crawled back into my shell, and tucked myself back into my crossed arms and legs when dealing with him. Over the next year, I became a little more relaxed with him, but still wary, frustrated with the whole situation, still didn't believe any of them ... my weight was purely behavior related and if I could just eat little enough, or right enough, it would finally go to a healthy level right????? Then Dr. M changed gears, and started to see inpatients only ... and I had to switch psychiatrists and went to a nurse practitioner. Shortly after that, I started to bloom, and started to get some things I'd written published. My treatment team, after one particular dive into relapse said "this is it, sink or swim, you are either going to recover or quit, eat or go" I decided that having been in myasthenic crisis four times because of the eating disorder and restrictive eating ... a respirator so that you could loose 100 lbs in 4 months is a big price to pay ... was enough ... obese and not in and out of the hospital had to be better than being a thin brittle myasthenic didn't it? So ... I started to eat. I gained. I gained, I ate anyway ... I panicked and listened to my nutritionist who promised that even with a metabolic disorder, that when my body started to trust me, It would stop. 6 months, I hit my all time high weight (which was actually the tie for my all time high weight that I'd hit 5 other times in my life). And I stayed there. And I stayed there. And I stayed there. And I stayed there. For 12 months, I stayed there. Within one pound. I stayed there. Then I went on prednisone, and I gained 13 lbs. I cried, but I was ok. I wasn't going to relapse over 13 lbs. Then my doctor wanted to start me on Topomax for the lupus headaches ... and the 13 lbs came right back off. Some of the other weight started to SLOWLY come off too. SLOW weight loss, something I've never done before. I've lost in the last 5 months, what was normally a 1 month weight loss! I've gone down one size. ONE. And that's ok. About the time I started on the Topomax for the headaches, my monthly lab work they do to monitor the Cellcept showed that my blood sugar was slightly elevated (in the high 120's) when it did it for the 3rd month in a row, the doctor said if it did it again in December, she was going to do further investigation. It did ..she did. The diagnosis was "Insulin Resistance" As of this last monday when I met my new endocrinologist my official diagnosis ... METABOLIC DISORDER. He told me that with the severity of the eating disorder, it was probably throwing the blood sugars, insulin, everything else they look for out of whack making it impossible to find ... but when I started to eat right, it finally was able to show up. He said it probably took a good year and a half to start to show ... and he just about nailed it ... December 2002 to August 2004 ... what was I doing to myself! Geesh! So, my therapist and I a few weeks ago ran into my former psych and tell him ... and he agrees to take me back on as a patient even though he's still not seeing out patients. He was so happy to have been right about the dx he really wants to be the one to follow me with it. So today, I go to see him for the first time in 2 years. I walked into his office ... and I was smiling. I sat down, I crossed my legs, and laid my arm on the arm of the couch, then moved my leg up under me instead of crossed. Dr. M let out this sigh ... and I said "what?!" He said "YOU! You're so different! You've changed so much, you're not in this closed off tight little box! I can't wait to hear about the changes you've made and the growth you've made. I've read the things you've had published, and I know you've grown leaps and bounds, but nothing speaks as loudly, as the relaxed way you are sitting here." He was truely happy to see me happy in life. I realized something today ... I'm proud of the changes I've made. I'm so relieved that they've found the metabolic disorder. I'm so relieved that I'm not going to have to live the rest of my life as an obese woman. But I also know, that I truely had learned that my weight was not who I am ... and that God made me who he wanted me to be ... if he had wanted me to be otherwise ... he would have created me to be otherwise.

Wednesday, February 09, 2005

Yeouch!

Pearls and Dreams

Dagnabit! Twisted that danged right ankle again.

Catching my balance with my left leg ... don't know if that was a smart idea, now my knee is burning ... it's not swelling, so that's good. Maybe I just irritated it. I'll tell the physical therapist about it in the morning. The whole left leg is throbbing ... ugh. not just the knee ... this should make PT interesting to say the least.

I am really enjoying the work out in PT. It makes it easy to get the exercise in that the endocrinologist said to get in too. That's helpful. I think I like the recumbant bike & the all body gym the best. Not sure about the isometric biofeedback one ... don't know if it's because there is 50 of those, and 50 of anything for a myasthenic is difficult, or if it is because watching the number go down ... is discouraging.
LOVE doing the squats on the wobble board. If you'd told me a few years ago that I'd be strong enough to do A squat, I'd have laughed at you ... now I can do 3 sets of 30 of 2 different kind of squats and on a wobble board no less!!!!

Maybe ... the cellcept is working? I really really think the combination of my first round of Physical therapy for the injuries a few years ago, that taught me how to deal with MG & joint pain, that we found out last year was actually lupus, has helped to increase strength to a degree ... but to a large degree, I think a lot of it is a combination of learning to live a new way on this planet in addition to the Cellcept which seems to be much more effective than the Imuran ever was. I mean, when I was on Imuran, I was also getting IVIG and I'm no longer getting that, but I'm significantly better ... sooooooooo ....

Now if I could just figure out how to be healthy enough to keep the schedule I'd LIKE to keep ....

oh well ...

I will one day learn that resting before I get into trouble (ie ..taking a break during the day is better than twisting the ankle at night ...thus putting stress on the entire body)

Oh well ... at least I am thouroughly enjoying my life inbetween slips and falls and pneumonia's and skin cancers ... and those seem to be the incidentals to my life now instead of the bulk of my life.

Tuesday, February 08, 2005

Nutritionist appointment

Pearls and Dreams

I saw L this morning ... and she said that the food plan is really more of a every couple of hours, rather than every 45 min. That's more of a figurative than literal that he was giving me *whew*

She DID say that she has seen people need to go to that extreme, but we're not there yet & we'll give the medications and eating every couple of hours a chance. So basically, we're going to do what I did when I was on the 80 mgs of prednisone to cope with the hunger that it caused.



Monday, February 07, 2005

Pearls and Dreams

Pearls and Dreams

I'm tired
well
I'm not supposed to ever eat a meal again
can ya hear my brain running away with that one?
I'm supposed to 'graze' all day, eat small portions, bits an pieces, servings at a time, not whole meals
no foods off limits
exercise is not only allowed, but required
he's already talked to neuro & rheumy !! YEA!

he said that when you make insulin, your body uses it in insulin receptors, when the receptor is used, it's used, and it's gone, your body is supposed to create another one
my antibodies prevent me from making new receptors
so I make all this insulin, and it has no where to go
so it stores the insulin ..in fat cells
in my thighs, butt and arms
he said if a normal breakfast for me is 2 eggs, toast, a yogurt, and 2 slices bacon ... and I eat it at 8 am ...
then I need to eat the 1 egg at 7:30
1 slice of toast at 8:15
yogurt at 9
slice of toast at 9:45
another egg at 10:30
bacon slices at 11:15
then start lunch at 12
so basically eating one serving, or half a serving every 45 min to an hour through out the day

do you have any idea how crazy this is going to make me?


he said that if your insulin stops producing, and it gets a break, then when it revs up, it overproduces
it has to be a slow steady production
slow steady small meals, slow steady small production of insulin.

He started me on Metformin. I start out on one pill a day, for a week, then 2 pills a day for a week, then 3 pills a day for a week, then 4 pills a day forever. He said Avandia may be in my future, but with all my other meds and health history, he wants to see how my body tolerates this first.

He said I have the full blown metabolic disorder. He'd gotten my records from my former Gyno, and I have the polycystic ovarian syndrome, the high tryglicerides, the obesity & the insulin resistance. I don't have coronary disease or the high blood pressure ..but those would be around the corner if we didn't get this under control. So we are very blessed in finding it this way through lab work than through symptoms or heart problems.

He also emphasized that it is NOT a weightloss plan, but an insulin controlling plan. Weightloss will simply be a side benifit, not the goal. (turkey doc had me pegged already)

Saturday, February 05, 2005

26 years, the pain is still there ... not as bad, but still there

Pearls and Dreams

Dear Dad,
Today is 26 years from the day you chose to leave me. I Don't hurt as bad as I used to, but I'm learning, the pain will never ever completely go away. I am learning to live with that pain. Learning to use that pain to help others. I posted this poem to you when I first started this blog, but felt that today, on the 26th anniversary of your suicide, that it was appropriate to post it again. I miss you, daddy. Something terrible. You missed out on so much, and I've missed out on so much because of your choice. I will always love you. Love Peggikaye
Left Behind, Suicide is Not Painless

Pulling in the parking lot,
The hymn you're belting out,
I am aware of nothing,
But my Daddy's praising shout.
A walk in the woods together,
On Thanksgiving day each fall,
It gives my mom a needed break,
As we ran and talked or played ball.
When my peers would tease me,
And I thought my heart would break,
It was in your arms I found comfort,
You knew my future was at stake!
Then one day I ran home,
A good day at school I'd had,
Excited to share my joy,
I didn't know I'd lost you, Dad.
The time will stand forever,
A memory never to be erased.
A vision of horror and pain,
Abandoned, now pain, with anger laced.
You left me when I needed you,
Your pain stronger than my love,
I was still a child at heart,
But that day - into adulthood, shoved.
What pain could you have had,
That made it worth changing my life.
Did you understand my heart,
Would be shattered under this strife.
"Get over it already!"
I heard from those around,
I learned I could not grieve,
Show only a smile, never a frown.
So instead of healing pain,
Denial became my game.
Never show the broken heart,
Being sad brings only shame.
It's time for real healing,
That means reaching out to show,
Christ's love to the hurting,
Through healing, brings a time to grow.
How can I tell others,
That what you did was wrong?
If I cannot face the loss and pain,
Can I help them understand the new song?
Let's finally face it, Daddy,
Your choice for death was bad,
Not only did you kill yourself,
But you broke my heart, made me sad.
Your temporary depression,
Caused for me a life of grief,
I must choose God's healing,
Only He can bring true relief!
Your death I tried to bury,
But I have friends looking down your path,
Somehow I have to show them,
They would leave behind pain and wrath!
A permanent deadly solution,
To a hearts temporary pain,
It is not the real answer,
It will bring heartache, not gain!
Real healing will only come,
When in God's able hands they leave,
Their own pain and desperation,
In God's mercy they must believe.
From a father who chose death,
To a God who breathes life,
An experience to share with all,
Proof God can heal a heart's strife.
So while I know their pain is real,
And I don't mean to lessen their grief,
I do want to be an example,
That only God, not death brings relief.
I will shout it from a mountain,
Write the words on many a page,
Till others know of God's grace,
And choose life, not death or rage.


© Peggikaye Eagler

Friday, February 04, 2005

Business

Pearls and Dreams

I did everything in PT yesterday that I had done on Wednesday, plus one exercise where I was doing squat like things on a slanted board that slides up and down. I think the PT called it an all gym. I easily did 20 of them. The 20 squats were much harder yesterday than they'd been on Wednesday. I completed the 50 contractions, but the HIGHEST I was able to get to was 55 ... my muscles were definitely paying a price for the success of the previous days adventures.

And soreness ... LOL ...um ... Yea ... wasn't sure what had made me sore till I got on the recumbant bike and went ooooooooooohhhhhhh wow!

BUT ..the point is ... I did it ... and I did it again ..even though it was slower and not as intense. 6 years ago, when I walked into physical therapy for the first time, I could not walk up and down stairs correctly, I had to take them one step at a time like a 2 year old would. Always leading with my left foot. Leading with my right was a sure fire way to land on my butt.
I could not go up more than 4 or 5 without stopping to rest or my legs would collapse.
I would NEVER have been able to do a squat. Not in my wildest dreams. And 50 of anything involving muscles was a dream a myasthenic just can't dare to dream.

So, how much is the Cellcept & Mestinon ... how much is the previous physical therapy that taught me how to safely get some exercise in without compromising my breathing muscles ... I don't know. My guess, it's a combination of both.

But from someone who exercised in her pre illness life as an obsessive exerciser (exercisor?) ..this feels really good. No, I don't want to be obsessive about it ... don't want to go down THAT road again. But I would like to be able to have a healthy amount of exercise!

Today ..should prove to be interesting ... I have to take my mom to a doctor's appointment at 10, she still isn't driving, because we still don't know if she had a TIA a couple weeks ago or not. Don (dh) is having an endescope at 10. He thinks he's driving himself. Yea, right. Obviously, that's not happening. He did say to get him up at 9, and he knew that I had to leave at 9:20 to take both him and mom ...so maybe he got his head out of his rear ...
Anyway ...drop mom off at one hospital ... take Don to another, get him checked in ... go back, pick up mom, drop her off, go get Don, take him home ..go to Physical therapy. Come home, feed kids ...go to small group by 6 pm.

This should prove to be a tremendously long day ...
How I physically survive it after the week I've had ...a week of tremendously long days, and 3 days in a row of physical therapy ... should be very very interesting. Days like today make me wonder if my neurologist doesn't really have a point ... am I truely too busy? Am I going to crash and burn ... and who pays the price when I do?
I don't have time to crash and burn this month ...
hmmmmm


Thursday, February 03, 2005

Starting Physical Therapy on knee

Pearls and Dreams

6 minutes on the recumbant bike.


50 (FIFTY) bio feedback ... he put electrodes on my knee and had me contract the muscle. When I started, I was hitting between 75 and 100. By the time I hit 50, I was in the 20's ... classic MG .

Then did 20 leg lifts with the leg lift thingy ... black strap with colored bobbles on it ... I use a belt to do that exercise at home.

Then he had me do 20 stair steps.

Here's the one that really had me laughing, cause I could DO IT ... 20 SQUATS ...I DID SQUATS!!! 20 ... a whole set of 20 without a break! ON A WOBBLE BOARD! He then asked me how I was holding up and I said I was getting a bit tired and he said "Well, let's call it that for today." (to which another PT patient in the room called foul play cause when he says he's tired they make him work harder. The PT students looked MORTIFIED that he was saying that. We all just ignored him.)

I go back in today and friday. Then MWF for the next month.

Wednesday, February 02, 2005

Starting Over

Pearls and Dreams

I posted this to a response on Jasper's blog. I wanted to post it here just cause ... I think it really has an important thing to say.

Starting over is very hard, if it was easy, everyone would do it without hesitation. If it was easy, the Bible wouldn't be full of people who had to start over. God had to give us example after example after example of people who started over.

Adam and Eve had to start over after the Garden.
Moses had to start over after he slayed the Egyptian.
Moses had to start over when God called him back to free his people from slavery.
Abraham had to start over in a new land.
Abraham had to start over being a father after decades.
Abraham had to start over after messing up and having ason through his wife's handmaiden.
Ruth & Naomi had to start over after their husband's died.
Job had to start over after he lost everything.
David had to start over after he'd been a simple shephard boy.
David had to start over when he was being chased by King Saul.
David had to start over again when he became King.
Jonah had to start over after being eaten by a whale.
Jesus had to start over because Adam and Eve had to start over in the Garden (I have very wide logic in that one, email me if you want me to explain that one)
The Deciples had to start over after their Lord was crucified.
Paul had to start over after he'd been persecuting the Christians.
Paul had to start over after he'd been in prison.
Paul had to start over after he'd been in prison.
Paul had to ..ok, you get that point.

We look at starting over and we all know everyone has to start over and that God understands it ...but do we really know that GOD UNDERSTANDS IT!!????????
So much so that he filled his Word to us showing us example after example after example of people who are starting over time and time and time again?

One thing remains constant in all those start overs ...God remains the same. His love for us is first last and always.
His mercy is new every morning ... for every new start, his mercy is there.

Tuesday, February 01, 2005

Note to self

Pearls and Dreams

When you're having trouble swallowing, and you're taking your nightly medications ...remember, with MG the more you do it, the worse it's going to get ... first take Mestinon, wait 20 min, then take rest of medications
second ... take prednisone FIRST .. .prednisone disolving in the back of the mouth top of the throat ... is just plain NASTY!!!!! YIKES!!!!!

Second note to self ...
you have lupus related memory glitches ... take all your medications in one place, do not walk around house with medication bottles.

HAS ANYONE SEEN MY BOTTLE OF PROZAC?????

I don't think my body is going to like not taking my 40 mgs tonight!I'm pretty sure this is one of those drugs you're not supposed to do this with. whoops.

Here prozac ...here nice prozac (said in here kitty kitty sing song)