Due to the HUGE amount of Spam PK has received on her blog...we added the word verification! This should help and y'all can comment here so she doesn't have to go through the zillions of spam comments on the "PK Update" post!
I still have more pictures of her, undeveloped in the camera, so there will probably be more Donut pictures to share. Bare with me.
Knee surgery update ... pics from surgery
This is the cyst that was hurting so badly that the MRI said was not there:(bottom right picture, the cyst was the size of a large agate size marble)
The following two show the hole where the knee cap jammmed into the cartlige leaving 2 minor holes where holes don't belong ... first the 4 pics, and then the close up ...
putting the knee cap back into place and cleaning the rough edges after it jammed the holes into the cartilege!
Ok ..that's the sad and gross things out of the way ...remember the concert I told you about a while back ... at the Ampetheater ... that was behind the Ampetheter ...
and now for why they were BEHIND the Ampitheater....
The first level of the stage is under water and the first 4 levels of seats ... Rows A -D is under water ....
(that's Benjamin standing there looking)
Still nothing profound ... the post is there I swear ... I did post something on my Spirituality blog ... I have something for here ..but I've been busy catching up with other stuff ...
Maybe later today, or tomorrow ... assuming Max Headroom isn't back ....
Well ...another gremlin free day ... but ... this won't be as long as I'd like it to be ... I'm headed back to bed shortly , my head is hurting. I just got on line looking for an important email and when the computer was working decided headache or no ... I should catch up a few things before Max Headroom caught up to me.
Oklahoma has not hit triple digit temperatures since 2003 ... and we've done a smashingly good time of making up for it in the last few days ... 102 yesterday ... depending on who you listen to ...103 to 105 today ... when you add in the heat index that will push it over 110. My allergies and immune system are in massive overdrive ... thus the reason for the headache. (As well as a full blown lupus flare and a minor MG flare)
Heaven help me ... there is nothing on the television this afternoon but paid adverisements, golf, tennis, baseball and an old movie. I like the old movie, but my son saw it and thinks once is enough. None of us like the paid advertisements. Tennis ... I can watch & enjoy, baseball ... I will watch & get into ..but I'd MUCH rather watch it in person, it looses something on TV, and what does my 15 year old want to watch ... GOLF ... golf????? Golf is the most boring sport known to mankind. GOLF??????? We're watching Tennis till my migraine medication sets in. Then he and his brother (who has found out that he's a natural at golf, not a good thing for someone living on our income to learn) can watch golf to their hearts content.
Interesting factoid we learned watching television last night. Amazing Race came to Tulsa for contestants this last week ...CBS Tulsa Affiliate showed some clips ... we were watching and laughing at the try outs ... and suddenly ... two friends faces flashed on our screen!!!!!! GO ERIC & WES!!!!!!!!! They are both married, with little girls, Eric has 2, Wes has 1. Wes is in my small group, and Erics brother in law leads my small group, Eric and I are on the worship team together behind the scenes stuff. Wes has had to overcome some amazing obstacles in his life to get to where he is ... he is Benjamin's idol .and role model. So we're really really hoping they get it. It would be soooo cool to see them on Amazing race ..and so fun watching them pull some of those stunts like eating an Ostritch egg or 2 lbs of cavier LOL They are both really really neat guys ... Eric's biggest flaw ...he thinks that when his 3 1/2 year old and 8 month old girls are teenagers, he will be able to 'reason' with them HAHAHAHAHAHAHAHAWHAHAHAHA HAHAHAHAHAHAHAHA His oldest daughter was born on my birthday, so she's special to me anyway!
I saw my pulmonologist on Monday, lungs were clear, but my movement of the chest wall was 'minimal' and he didn't like my eye movements ... so now I have to go back to my neuro. I'd cut back my mestinon because of side effects ...Dr. G wasn't happy that I'd done it on my own. I informed him I have that worked out with Dr. M and he still didn't like that. But, Dr. G's mom was a friend of mine, and if he doesn't take good care of me, before she died, she threatened to come back and haunt him ...so he's just a bit overprotective of me (grin). I'm calling neuro next week ... can't continue to take the higher doses that i've taken for 13 years ... because the side effects that have never been there, but ... now the MG is raring it's ugly head ... Dr. G seems to think double vision and breathing at full capacity is an important issue. So ... I'll make the call. I told him I'd do it last Tuesday ... I haven't. I will Monday.
Lupus is just plain rude. I've overdone it for the last 3 or 4 weeks, plus with the summer heat, a couple of minor sun burns (yea, I know ...lupus + sun exposure bad idea).
Our church is going to be short handed next week ... Children's pastor out on Maternity leave, Youth pastor at kids camp for the children's pastor, Church secretary out of town to see a sick relative. leaving the senior pastor and the associate pastor. So ... one girl and Samuel will be manning the phones next week. Sarah on Monday and Wednesday. Tuesday Thursday Friday for Samuel. It's nice they have that kind of confidence! (he better not embarace me! LOL)
Well ... I have a lot I wanted to ay the next time I blogged, something profound and deep ..but headaches tend to leave room for facts ...just the facts .... so ... maybe later tonight I can find something more profound to say.
Donut and Twitch (Donut is the one lying sideways, Twitch is the one with 'the tail')
I am a cat person ... and I've had cats for as long as I can remember ... but of all the cats I've ever owned, Donut, has been my favorite.
Last December, Donut gave birth to 6 kittens (lost one) and then she escaped before we could get her fixed. Last Tuesday, she gave birth to one little kitten, then started to hemorrage (sp?) and we had to have her put to sleep on Wednesday.
The kitten, was very strong and we named him Sampson. We bottle fed Sampson ..and he seemed fine. Till this morning ...he had a 'clicking' with his breathing ...and a few minutes ago ... I went to feed him before going to my meeting and found that he'd died.
Maybe he just missed his mommy too much. I miss his mom too.
Before I get to the topic of this post ... a few updates : my computer is still possessed by Max Headroom and his Gremlins. (Please excuse any typo's)
Second ... my Dad's visit from California has come and gone ... he flew home this morning at 6:00. If anyone on my ED treatment team actually reads this blog ... yes, I continued to eat ...no, I did not keep our agreement and follow my food plan and eat the 6 small meals a day regardless of what was going on and what they were doing ... I ate when they did. I don't know that I will ever get to the point where I can eat in front of my dad if he is not eating. Sorry.
Third ... Donut, my hussy of a cat who keeps escaping the house 3 weeks before her 'fixing' date ... is going into labor... I just about took my ambien when I realized it. Glad I didn't. I'll need to be up with her tonight. She went into labor about the same time of night on December 17 and had her first kitten a few minutes after midnight (I remember the date easy because it was Bj's 13th birthday) ...why could she not have them during the day?
Fourth ... my boys both went off today to church camp. First year they've gone in the same week. We had to scrounge to find them suitcases ... usually Benjamin goes, comes home on Friday, and Samuel leaves the next Monday using the same bag! Whoops. I didn't remember till yesterday afternoon that they'd need 2 separate bags! I also barely remembered in time to check medications, all of Benjamin's would have ran out WEdnesday. I called in the refills yesterday, thannk goodness he didn't need docs authorizations on anything!
Ok ... now for the mother's dream post ... if anyone is still here ...
Benjamin has had more struggles than I could even begin to name. When he was little, he couldn't stand to be touched. As an infant, he would not eat if he was being held close. As a toddler, he would get very upset if you tried to hold him. I'd go into his room after he was asleep and hold him, and rock him, singing to him in his sleep, because he would not be sung to when he was awake.
When we put him in the pool, he'd sit in his swim ring, and spin, and spin, and spin, and you better not get near him. Getting him out of the water was an absolute nightmare, because touching him in the water would send him over the edge. He loved the pool, but getting in and out was just traumatic...for mother and son.
When he'd get a runny nose, which was often because of the allergies and IgG deficiency ... and anyone went to wipe it, he'd do one of 2 things. He'd cry and get hysterical ... or he'd freeze, and just stand still with no expression, it was like there was no one left inside for several minutes. I don't know which reaction was worse. Both scared me and broke my heart.
Then ...we got him into therapy for the sensory integration issues ... and he could start to tolerate being touched ...and the spinning stopped ... and the self stimulation stopped ... and then he could stand being held (well, hugged anyway, snuggling ... nah, not gonna happen) and he could play in the pool
This was important to me ... we're Christians ...aand Baptism is important ... it's not a salvation issue ...but for us, it's a declaration of faith, ... it's saying that 'we've made a decision of who've put our trust and faith in. A child who can''t be touched, who can't tolerate being touched in the water ... can't be baptised, no matter where their faith is. So ... Iwas thrilled ... I knew my son was going to be able to make the decsion to be baptised, once he was able to understand why we practice the ritual.
Then the neurologist put him on a new medication for his Tourette's Syndrome. This was a miracle drug for him. Not only did it control his tics very well, but it helped something else wen't not expected ... he had horrible impluse control ..and the neurologist and child psychologists had said he'd not be able to develop it because he was born with a brain malformation in the frontal lobe of his brain. At 10 years of age, he was still darting into the street, grabbing hot curling irons to move them, reacing into boiling water... the worst, I couldn't cook his favorite food when he was home ...chicken, because as soon as he smelled it ..he'd reach into the 350º oven and try to get it.
The neuro kept trying to put him on halodol for the TS and I didn't want him on an anti psychotic, when the tics got so bad, he said Risperdal. I was exteremely busy ..and went to my email support list and asked what they knew about it. I got glowing reports and decided to start it and research later, I trusted these people. 4 days later, tics had calmed down dramatically. Bj asked to go to a friends house. I said ok, and followed him out onto the porch and he got to the end of the driveway and stopped. He was just looking back and forth and back and forth and back and forth ... I asked him "what ARE you doing?" He responded with a rather sarcastic remark ..as if it was something he'd been doing every day, 10 times a day for 50 years of his 10 years of life ... "Mom! I'm looking for CARS!!"
A few weeks later ... I did some research and learned that risperdal was an antipsychotic drug ...safer than halodol, but same class. WOW, had I known that, my son would still be reaching for potatoes in boiling water!
A negative side effect with the impulse control came fear. Over board fear ... Give me the choice between a bit too much fear (add a touch of OCD with over reactive fear response ... ) and I'll take calming the fears over chasing a 10 year old body with the impulse control of an infant.
So ..what does this have to do with sensory and pools and baptism ...just about the time that Benjamin had overcome his sensory issues and was understanding Baptism ...he became fearful and couldn't stand to be infront of people. Every baptism service for 3 years ...he'd cry ..because he'd want to be baptised, but was too afraid to do it in front of people ...which, in our faith ..is the purpose of the baptism. It's a public declarlation of following Christ. Hard to do a public declaration in private.
3 months ago ... during a baptism service, Benjamin looked at me and said ...when Grandpa comes ... I'm going to be baptised ...
So, Sunday morning, July 10, 2005
Benjamin stood in front of about 250 people .. .having overcome extreme sensory issues and extereme fears and decleared his faith in his Lord.
Once again ... another dream has come true for his mother.
Tuesday ... the computer was as dysfunctional as ever. So, the gremlines are aparantly back. My computer geek friend told me to never get them wet or feed them after midnight ... after I told him that Max Hedroom has possessed my computer.
Since we both understood the reference without explination ...we have both decided ... we're getting too old!
So .... after getting through the week of disgustingly hot temperatures ... and a storm last night that I did not hear but evidently parts of town lost power. Things have cooled off a bit.
My dad will be flying in for a week plus a few days visit from California. A week from Sunday my 13 year old will be baptised. (He wwanted to do it while my dad was here.) my dad's visit is always exhausting ... driving back and forth to my sisters house every day and then 'entertaining' and trying to behave like a healthy person ..because for soem reason ..even though I know that he knows that I'm not healthy ... I never can let him see me at any less than my best ..even though my best will never be good enough for him anyway ...so why I bother? who knows ..he's still going to e giving me those bored to tears 'oh my gosh did I actually father a cperson who could have ever become so inccredibly inept and such a failure"
oh well ... Maybe I'll crosseyed back at him when he gives me that look this time.
Sunday we're leaving Dad with my sister and going to small group party anyway ... Wed, I have doc appt and my eating disorder therapyappt (gee, wonder why she wants to see me while my dad's here) and I pull music, plus the meeting for Bj's baptism on Sunday, and then class that night ..so I get out of going on WEednesday. Thursday I work at HAbitat REstore again from 9 to 1 before going out to my sister's.
Friday night small group which we're not going to miss out on ... so that's one less ... the next day will be my sister's birthday
Then Sunday's Baptism of my 13 year old Son. Which I am very excited about. Bj' made it a point of wanting his grandfather here ...and if Dad ruins it by making comparisons of my brothers and how he wasn't at mine or my sistsers (Becaue HE'D walked out on my mom) I think I'll blow a gasket!
He just can't ruin this day for my son! My son's father better not ruin it by not being there either. !
oh boy ... I waant the next week GONE
Then ...the 11th ...and Dad goes back to CA and the boys (Both of them!) go to church summer camp!! After I get what is supposed to be the final follow up mammogram .... I will be freeeeeeee weeeeeeeeeeeeeeeeeeeeeeee
WOW WHO HOO !!!!!!!!
Hopefully by then ... my computer will be gremilin free.
My computer went haywire and started acting up. Taking so much time to do anything ...it was absolutly CRAZY.
A computer geek friend told me of a couple of free programs that could clear it up Friday night. He said they would each take about 20 minutes. I tried the first one ...took about 90 minutes to tell me that if I continued it would corrupt my computer (thank you AOL for being so proprietary!) and the second one took 2 hours to tell me that it would not work with AOL (again, thank you AOL!). So, then I figured ... well, I should do the AOL computer check (duh)
and it took 2 hours to tell me that it could not do it.
3 am I gave up and went to bed.
My plan was to go to the library today to turn all my email groups to no mail, post a post here to say I'd be MIA for a while. Me being me gets sick ... massive UTI, and I'm too sick to go to the library. So, I figure I'd take the 2 hours that it would take me to do it on line ... .and lo and behold ...my computer is working better than it has worked since we were given it in October. Go figure.
Tomorrow, my husband is taking my sons out fishing on an overnight fishing trip ... I will post about the ball game :)
My back hurts. In the most common area to have back pain. I rarely have back pain in the most common area to have back pain, so this has caught me off guard a bit.
I'm not sure of the cause but I have two suspects.
On Friday morning, I fell, and fell hard. Benjamin left marbles on the living room floor. I slipped and fell on them and fell forward, hitting my left shin on the box of pictures Benjamin left out. (same leg I just had knee surgery on!) Then, I flung backwards hitting my upper back on the coffee table. I could have arched my lower back with either jerk ... I am hoping the cause of my pain is that fall.
The other suspect is ... a new pair of shoes (I was wearing them during the fall). I haven't worn hight heels since I got sick because weak muscles and heels just doesn't ever seem like a wise idea. Big clunky heels that was very much in fashion when I was in high school was out of fashion when I got sick 15 years ago. The big clunky heels that have come back IN fashion have not made it to the Walmart prices that I can afford ...
BUT ..at a garage sale 2 weeks ago ... I found these (2.5 inch at toes and 3 inches at the heel in height)
and I have worn them frequently.
While they are pretty much even in height ... I am still wondering if they are the cause ????
I love them. My ankles are still more stable than they are in even some of my flat shoes! I have to PURPOSEFULLY turn my ankle to ge them to turn! However ..that does make me wonder ...if I do accidently turn the ankle ... since I don't have my normal laxity ...will that cause an injury I can't deal with? shhhhh don't tell husband I have these doubts about these shoes. He hates them and thinks their ugly and is threatening to tell my docs I'm wearing them!
I realize that I was raised in a tiny town in California, and a mountain community, at that. However, I still tend to be a bit snobbish about the town I currently live in. I tend to get a bit ..um ... shall we say ... maybe a bit ... stuck up ... when I think that Oklahoman's think they can have culture.
Why? I don't know ... I think simply because ... I am from California and what makes Okie's think they can have anything of culture? The fact that I have lived in Oklahoma for 23 of my 40 years ...seems to be beside the point when it comes to my inborn snobbishness.
I went to this riverside concert tonight. It was supposed to be in the Riverside Ampetheater. When we arrived, everyone was setting up their seats to the seats BEHIND the ampetheater ... with my typical California vs Okie snob attitude ... I snicker to my mother "um ..they can't see the stage through the stage seats!" We get up to where they are handing out the sponser sheets (minus programs because the printer forgot to print the programs for the night HARMPH!!!! cough humph!) "We have to sit back here tonight because the Arkansas River is too high tonight"
Well ... ok ... I guess ... Okies.
After we set up and I'm sufficiently bored of sitting listening to the instrumentalistst tune up ... I decided to go look at the ampetheater ... well the stage lower level was under water, rows A- D were under water and the road leading to get the equipment from land to the stage was under water ... well ... ok ... Even in California that would have been an interesting feat to overcome.
So, I go back to my seat and I notice one other inexcuseable problem with Tulsans ..and this really is a problem that I will not offer any excuse for ... I saw three people who would not have marked Caucasian on a government or medical form. There were a few hundred people there. Tulsa is a community of a half a million people ..and not a half a million white people ... we really really need to mix a bit more!!! GEESH! GEESH GEESH!!!! You would never get that many people in California together and have just one race together.
Once the music started to play ..a bit of my snobbery disappeared ... Duke Ellington Tribute ..and played well .. it was hard to be snobbish when listening to very good jazz music!
During the intermission, the radio station sponsoring the event had a drawing. While I was entering the drawing .... I did something I NEVER do ... I signed it Peggi instead of Peggikaye ... on the off chance that I actually won something (HA) they wouldn't have to stumble over my name (you'd be surprised how many people can't say Peggikaye Eagler!!!!)
So, they start to do the drawing and I'm sitting there thinking "God, you know, if I won one of these drawings, after the week I had, it would just feel like a hug from you!" Then I immediately apologized to God telling Him that I am very aware that my relationship with him is more than a supersticious "if you let me win this, I'll know you love me!"
So, the drawing for the two HUGE Making Sense Candle's were drawn (men won) The drawing for the theater tickets was won The drawing for the movie tickets was drawn. Then the drawing for the 10 tickets to the Driller's baseball game. "Peggi Eagler! You've won 10 tickets to the Driller's baseball game this Saturday!"
My mom squealed Benjamin SCREAMED and I got up and went and got my free tickets thinking "WOW! God, thank you!!!"
As I sat back down in my seat... I thought ... "you know God, you have a really funny sense of humor! To make a point ... you say OK but to the ONE prize I could really have cared less about???????"
Everyone was thinking I was smiling cause I won the tickets ... I was smiling because I thought God was really really funny!!!
Today is Father's Day. I should be paying tribute to my father in California, or the father of my children. But the father on my heart is the father that is missing in my life. My step father. It's been twenty six years and he is still a missing hole in my heart.
Today at church they mentioned things that children learn from their fathers. I wanted to say some of the things that I learned from my step dad ...
I learned to laugh even things are tough.
I learned that when things are hard, that is when the real growth takes place.
I learned that radishes can't grow if you pick up the seeds that daddy has put into the ground ;) I learned that when you are riding on Dad's shoulders, the names that the girl at school called you that morning, doesn't matter any more.
I learned that just because I couldn't tie my shoes yesterday, does not mean that I cannot tie them today.
I learned that just because I am not liked by everybody, does not mean that somebody (him in particular) doesn't love me.
I learned that when my sister makes me mad, weeding the radishes will get the anger out better than hitting her back...and will get me in far less trouble!
I learned that the whole world could say I was not good enough, and he would say " You're the best!"
I learned that no matter what ..even when he died ... and his body was no longer here to hug me and I could no longer look in his eyes, I would always be ... Daddy's little girl. I love you Dad, I always will ...
My Dad's Shadow by Peggikaye Eagler
My dad had a shadow,
It followed him all year long,
During the winter, it would go behind,
And throw snow at his back,
During the spring, it would follow him,
Out to the garden to pick up the seeds,
He 'accidently' dropped.
In summertime it would follow him to work,
And make more messes.
In the fall it would go behind,
Jumping in the piles of leaves he had raked.
The one spring he turned around
No shadow could be found,
Only I was standing there,
With a grin on my face and some seeds,
in my hand,
For you see ... the shadow that my dad had,
Was not a shadow at all,
IT WAS ME!
303.75hours out of 450 needed to build. 147.25 to go
Grades from the boys have accounted for 24 hours Don has given 15hours. The rest ... has been myworking. All of them.
The plan was since I was gimped up this month, that Don would actually get in and start working this month ..but he wasn't doing it ..and when they let me know they needed help ... and since I recovered so quickly ... I just went ahead and took it. It may mean that Don won't pick up and help and it will be all me. A one man show the whole way ... oh well. :) It will definitely mean something more to me!
Starting in 2 weeks, I will be working every thursday morning from 9 to 1 pm at the restore as a cashier. So I will be getting our 15 hours minimum in every month ... anything extra we do will be added hours! YES!!!!! Little by little ... we'll get there ..........
I don't know how most orthopedic post surgery follow ups are done ..because of my complicated medical history ..mine are usually a 1 or 2 week follow up, then a 6 week and a 3 month.
Plus Physical therapy.
I get to do home physical therapy because I already know how to do all the exercises and my knee is doing so well.
I only have to do the 6 week and 3 month follow ups if something comes up because ... I'm doing as well as where he'd expected to see me at the 6 week out mark. I'm done.
I still haven't gotten around to the posting about the complications I had in the hospital after my knee surgery two weeks ago. Tomorrow will be 2 weeks. I had pretty much decided that I was just going to let them go and ignore them ... then had my follow up with my ortho doc today. Now that I have A/C in my living room working again and can actually spend some quality time in here ... I think tomorrow ... will come the post of my worst stay in 23 stays in the hospital.
I went to my surgical follow up. Found out that the reason that the ortho put me on a months worth of antibiotics was so that I could go back on prednisone immediately following surgery. He showed me where he'd put on the discharge that I was to NOT be given standard prednisone follow up ..but to be allowed to take it THAT day!!! (IN THE HOSPITAL!!!!!) And antibiotics to deal with posible slow healing or infection due to prednisones immunosuppression!!!!
So ...my 2 weeks of lupus flaring is for naught ...
GROWL. Thank goodness my MG right now isn't dependent on the prednisone (then again, if my MG was dependent on it, it wouldn't be 5 mg and I'd not have been off of it for surgery ...that's another story all together)
Anyway ..that aside ...
I got the pictures from inside my knee ... the part of my knee that the MRI said was fine and he didn't understand why it was hurting, that it 'might' be lupus, but there was no indication of even lupus type inflammation there ... had a huge ganglion cyst there! (I would have thought the MRI would show it! But , it didn't)
He found a big tear he didn't expect to find, and a little tear he did, that looked significantly bigger on MRI. (My knee never looks on the inside like he expects to see it (grin).
So ... all is well now. I've already taken my prednisone
He's going to find out who told me that I couldn't take the prednisone ..not that it matters now ... but ..nothing else was handled right ..so what's one more????
oh well ... in 3 days, I will be a new person. None of this will matter any more.
I know that you like to play with the brains of us mere humans. I am aware that it gives you pleasure to confuse us and to sometimes please us and sometimes upset us. I am aware that you don't always do what is expected of you. But ... I am beginning to wonder if you are really as clever as what you have been given credit for.
Maybe you don't like to play with us. Maybe you're just really ADHD and disorganized! Maybe you're just distracted and forgot to read the calendar and don't know what the heck you're doing!
My whole life I have been taught that Mother Nature is fickle and likes to tease the human race. There was once even margerine commercial about the perils of trying to fool Mother Nature and her wrath that could ensue.
The last few weeks, watching my ADHD mother and sons ... I'm beginning to think ..you're not so fickle ..you're not so vindictive ..you're just scatterbrained!!!!
Oklahoma's severe weather season is from March 1 to May 31. Yet, this year, we got not one single severe storm warning during those dates. Nada ..zip .. zilch ...zero.
Since June 1 ...we've had several. Almost nightly we've had tornado warnings. Storm damage in Northeastern Oklahoma has definitely been worse in years past, but for June, it's quite severe. Power outages and tree damages is getting quite severe. I am getting fed up with having to stay up well past my bedtime to see if we're going to have to flee our mobile home to take shelter in more solid surroundings from your fury.
Last weekend, just 2 days following my knee surgery at 11:30 pm, you decided to do this to our porch
And this to the mobile home itself!
Normally, storms do not bother me. Our boys get a kick out of fleeing the house at midnight to take shelter at the nearest resteraunt to watch the storm (that may sound funny ..but if you've ever seen footage of a flattented resteraunt ..the walk in refridgerator is still standing! We know the people at the resteraunt, we take our coats, a deck of cards, and we order fries and hot chocolate and watch the storm. Only once have we actually taken shelter in the walk in, that was the May 3rd tornado's that ripped up Oklahoma several years ago).
Usually, you give us a break ... I swear ...we've had as many storms since June 1st as we normally have during the whole season. Ok, I might be exaggerating a bit ..but JUST A BIT!!!! COME ON MOTHER NATURE ... it's not our fault you forgot to send us tornado's and thunderstorms in March through May ..enough is enough. We've had warnings every night for the last several nights now. Tornado season is over. You had your chance.
For the last couple of years, I've noticed the weather can't make up it's mind in the summer what it wants to do, in the fall what it wants to do ..in the winter ..etc ... and the weather is just all confused ... it really does make it quite difficult on those of us who have bodies that are effected by the weather.
Mother Nature, have you considered talking to your doctor about taking Ritalin?
Once upon a lifetime ago, I thought prednisone was the most evil drug on planet earth. Then I got the 5 mgs a day for the lupus pain. I realized it did have a positive effect. Then they took it away.
Now I can't have it back until the surgical sites are totally healed over ... one of the sites is still a scab and has one of the internal stitches sticking up .. grrr ... so I'm still off prednisone.
My wedding ring is a size too big for me. I have two sizes shoes. My size 8 1/2 regular shoes and my size 9 wide width shoes. My size 9's are for when the lupus is flaring ... well, my size 9's are tight.
I want my prednisone! I WANT MY PREDNISONE I WANT MY PREDNISONE ... ok, going now for a nap. I do have something positive to say today. BUT I needed to get that gripe off my chest first.
It was terrifying at first. When Don got the letter, it was Thursday while I was in the hospital. The two times I'd looked at it, I was under the lortab influence. I didn't question it when Don said we didn't have to bring Benjamin. Don said they had to talk to us ... the bottom of the letter said that if we needed more information about the incident, to talk to our child ..so ... I didn't question further. (I should know better by now than to believe Don on details).
We got there, and the assistant district attorney said that we had to have Benjamin with us because he had to read him his rights before he could question him, or before he could give us any details.
That sent me into panic mode ...absolute panic. Don got angry ... I was panicking. We both got very upset and the man would give us no details in the complaint without Benjamin present.
We rescheduled for 2 pm.
We came home and to take up time, I to Bj to get his hair cut.
Bj of coarse, was once again absolutely terrified ..only this time, with knowing they were going to read him his rights, we knew it was more serious than what we'd anticipated and we had no idea how to put his mind at ease. Other than to be honest with him and say that God has everything under control even when we don't feel like he does.
Don called the ADA's supervisor, who read the police report to Don. The police report said that they went to the child's apartment where the child had slight swelling under the right eye. The child said that they bumped into each other in PE and that he told Bj to watch where he was going and Bj started to cuss and yell at him and pushed him and then punched him in the face.
He told the police that there had been no previous exchanges between them and didn't even know Bj before this incident.
The mother also told them that Benjamin had been suspended from school for 2 weeks. (4 days of this school year, the other 6 the start of next school year) (However, they've been in the same PE class all year, as well as having gone to the same elementary school for 4th and 5th grade and having had the same home room teacher for both grades ... in a class of 20 kids in each class. 24 kids in the PE class. )
So, we go back at 2 PM. Because of the way the laws are written, and the supervisor gave us the report, the ADA said something about it didn't matter any more about reading his rights because we had the details and unless they were going to take him into custody, they wouldn't be reading him his rights, so anything we said about the incident would be 'off the record but taken into account' (in other words, could not be used against him).(I still don't understand the logistics of all this, but it all worked out without my son having been read his rights ..so I'm fine with how it worked out)
So, we gave him our side. That the child came across from the other side of the gym and started to yell at Benjamin, cussing at him, calling him a fat (ahem) and other explitives and then pushed Benjamin. At which point Benjamin punched him in the face. Afterwards, Benjamin IMMEDIATELY apologized before the teacher could get to them!
The ADA asked who told us that version, I said Benjamin and the vice principal. She said that the gym teacher heard the other kid cussing at Benjamin and said that it was equal yelling going back and forth between them.
He said "what about the suspension, who suspended him, and for how long?"
At which point ... I grinned and was able to say legally "He was NOT suspended. We pulled him out of school for the remaining four days because the year had been so rough for him"
We had the discipline referral that says "student pulled from school for remainder of the year at parental request" The suspension box was not checked, the detention box was not checked ... NO discipline box was marked.
Boy was I glad we'd chosen that route! We'd had the choice of allowing him a chance to get higher grades and do his work at home and call it a suspension. Whew!
So ... We were in his office for about an hour as he talked to Benjamin for an hour about who he is as a person. What his interests are, what he likes to do. What chores he has, why does he have to do chores? What is his curfew? Why does he have to follow a curfew? Benjamin answered all the questions and answered them better than we thought he could have ..with more understanding than we thought he had ... with more understanding of them than DON has of them! (which, actually seemed to make a point with Don)
(Don thinks I make them do chores because I don't want to do them. I make them do chores to give them a sense of responsibility, work together as a family unit and know how to do those things when they are out on their own.)
Bj's answers: "Well, my mom wants me to know how to take care of myself when I'm a grown up, and how to work as a team member when I get a job somewhere, so doing the dishes with my brother teaches me to work together with someone to get something done and not be a lone ranger."
So, he said that he has to send out a letter to the other family, and if they want monetary damages they have to prove there is monetary damages incurred (medical bills not paid by insurance). If so, he'll call us. Then we go to court where everything will be told to a judge. At which point, the judge will hear that it is a fight of mutual responsibility and be thrown out. If he doesn't hear back from the family in 30 days, then the case will be closed with no action. The judge will also see that Benjamin has not shrunk back from his own part in the fight at all and has seen the responsibility that he himself has carried. There will be no consequences for Benjamin because consequences are handed out to try to get a kid to learn that what he's done was wrong, and Bj already knows that. He asked Bj what the worst thing about this whole thing was for him and Bj looked at him very with a very somber expression and said "My testimony for God has been tarnished"
He was so impressed with Benjamin. He said he doesn't get to meet kids like Benjamin so this was a pleasure for him and he was sorry we had to go through it. Benjamin shook his hand (Bj initiated the handshake) and said that it wasn't a wasted time because he can share it with his friends who are being bullied and maybe they won't react like he did and it if it keeps one of them from reacting like he did and prevent this ..then it's worth it. The ADA just sat back down and stared at Bj and said for about the 5th or 6th time "you've got good teaching and it's deep in your heart!"
It was absolutely terrifying experience for us all. Hopefully it's over for GOOD.
I'm walking normally. No assistance.
I told the doctor's office that on Monday. The nurse asked how many pain killers I was taking in order to accomplish such a thing. I told her 2 at night and 2 that morning. She said "oh, well, then that's ok."
Then I told her that I was taking the 4 a day that I am taking as a way to cope with being off the prednisone because of the surgery so I was really still taking the lortab to deal with lupus pain, not surgery pain. She said "oh, then that's REALLY ok!"
I get to start taking prednisone as soon as the surgical sites are completely healed. When that will be? Not sure, thanks to cellcept, I still am going to heal more slowly. I also have one internal stitch sticking out of the left hole. Don't think that was supposed to happen.
The muscles that were angry when they taped up the knee are really really unhappy . They don't like the kneecap being where it is. The knee itself is great! My right side is not any too happy, nor is my left hip. But the knee itself is great!
But, when you have surgery on Thursday and by Monday you can put full weight on the knee, you can't complain too much!
I have rested quite a bit Monday, yesterday & Today. Knee is doing fine, lupus & MG aren't faring so well. They still know the body got put through the wringer. So ... I'll still be taking it easy till the immune system decides it can calm down.
I finished my leadership class last Wednesday night and started a new class tonight. This one is about Peter getting out of the boat during the storm and walking on the water with Jesus. Basically, it's not about how he sank after a step or two (what most people focus on when they preach on it) but ..on how he actually managed to step out of the boat ...who CARES if he sunk after a step or two! HE got out of the boat!
So, the questioned was asked ... 'what is keeping you in the boat?' Why are you a 'boat potato?'
They give the choices of spouses, bosses, low expectations, lack of education ... all kinds of things.
I could blame my husband ... he doesn't like me doing much of anything that he's not the center of. I could blame my health ..that'd be an EASY one ... I could blame being the mother of two teenaged boys ..that'd be easy. Throw in their Tourette's and OCD and hey! Who could blame me for not wanting to step out of the boat?!
But the reality is ... it's the poverty. It's the social standing. It's the class. I come to the internet and I join support groups and message boards and blogging world. I make friends all over the world who accept me for who and what I am. And with them, I am more real than I ever would dream of being in person. I open my heart, and my fears and my insecurities and I also am more likely to show my strengths, my intelligence and my abilities. I am not afraid to tell someone what I think or to offer advice. I am simply ... ME.
I have mentioned that I am on social security disability and that we don't have much money ...but ..the degree of that lack of money isn't real on the internet. My lack of education ..doesn't matter.
On the internet ..what matters is "do I make sense?" Are people touched by what I have to say? Do they laugh when I say something funny? Do they cry when I say something sad? Do I touch a nerve when I mean to? On the internet ..all things are equal. There is no social class. We all have internet access one way or another ... so if you make a million dollars a year, or if you make 10,000 a year .. it doesn't matter ..what matters is the heart behind it. Because of that, I can be real. I can step out of the boat on the internet. I can stick my neck out and say what I need to say, do what i need to do ... and I am accepted, and loved.
But in person? What is keeping me back? In person ... those judgments are made ... and they are made with quick and irreversible strict judgments. Walmart clothes and worn out shoes, a medicaid insurance card ... and you're labeled... and respect is lost and taken in one great big fell swoop. You could be as poetic and intelligent as Robert Frost and it would not matter ... because ...your income has you below the poverty line. You have no social class ... you have no standing ... you have no clout.
My church is unique. They look past the $$ and I am accepted on the level as everyone else. They don't see a lack of money when they see me. Intellectually, I know this. In my heart, I know this. But, there is a part of me that still wonders ... if I step any further out of the boat, if I truely step out onto that water ... will I get smacked down by the wave of poverty and reminded that those who live in poverty don't belong in positions of leadership. Will my words ever make it out of the internet and into the lives of people who's faces I can see?
A Voice in My Heart by Peggikaye Eagler
Lord, did I hear you?
Did I really hear you call my name?
Was that your Voice I heard?
My answer will not leave me the same!
Lord! Are you sure?
This is me you're talking about,
What words do I have?
I have no proof of any clout!
Lord, did I hear you right?
A voice to share your power?
But will they listen?
I live at the bottom of the tower!
Lord, OK, I hear you!
Give me courage to follow your call.
You promised to equip,
So, only in prayer and worship,
on my face will I fall!
Yesterday afternoon, I went to a baby shower. My justification was that it was 89º outside and we live in a mobile home, and we don't have our A/C working ... and it'd be cooler at the baby shower. (true) Truth be told, it was the children's pastor's baby shower ...after praying for her for 5 years to become pregnant ... and many many years of tears and frustration for her as we, as a church watched their battle with infertility. I wasn't going to miss it if I possibly could help it!!!
Last night, we had to leave the mobile home because of the storm, we had to be gone for 2 hours.
I woke up today and it didn't seem to hurt as much. The walker hurt my hands and shoulders more than it hurt to use the knee. So, I've been walking on it all day. Since it hurts my right leg so much to favor my left leg, I've barely limped.
Today, I found out that someone from our church was coming to bring us a meal. I decided my house wasn't clean enough, my kids were no where to be found ... I picked up.
My knee and my left calf and foot are pretty swollen. You can't see the wrinkles in my ankles and toes ... you can't see the ligements/tendons in the top of my foot. You can barely see my ankle bone. You can still see my knee cap, barely. The pain is unreal!
OOPS I guess tomorrow I'm back to bedrest & walker usage. I don't remember when my last pain killer was .... guess it's time ....
Thursday evening, while in the hospital, my mom comes up to see me, bringing my 13 year old son with me. My husband and my 15 year old come in right behind them.
My husband, tells us that we got a letter in the mail that day and it was not good news. The Thursday before school was out, my 13 year old was in a scuffle at school.
The letter was from the district attorney. The parents of the other child are filing charges against Benjamin ... criminal assault and battery!!!!!
We have to meet with them on Thursday. Chances are it will be dismissed when they hear the story.
Hey dads ... future dads ... if you ever come up against news like this ... DO NOT SAY THIS KIND OF STUFF IN FRONT OF YOUR CHILDREN!!!!!!! IT WILL SCARE THE FIRE OUT OF THEM!!!!!
GEESH! I can't believe my husband didn't have the kids step out of the room. My son immediately started to cry and almost started to scream "Am i going to jail?"
The poor kid. He doesn't deserve this. I'm so mad at the other parents, I'm furious with my husband for not being sensitive enough for not dealing with this with me first then US figuring out together how to deal with it with Benjamin ... geesh.
We kept telling him that our pastor said there is no way that this is going anywhere ... that it will just get investigated and then closed. But he had to know what if (gee, you have a kid with OCD ...what do you think is going to happen????)
So I finally yesterday after praying for 2 days on how to calm him ... came up with "look ... the worst thing they're going to do is make you go to anger management classes" he was fine with that. His immediate reaction was "Oh, ok! That will help me to better deal with Samuel!!" Now he wants to go to anger management classes! (grin) He's such a good kid!
Well, I was going to post about how I was doing, but, by the time I got caught up on the blogs I read and my emails ... my pain medicines have kicked in and I'm getting groggy.
I will post in a bit. I got home on Friday. I'm getting around ok. I think the rest of my body hurts more than my knee trying to favor the knee. I think the recovery is going to go quickly now that I'm out of the hospital. I will post later today or tomorrow about how that went. It was, by far, the worst stay in the hospital I had ever had. Not just one problem, not just two, but constant and at times scary. How I stayed off a respirator and out of ICU ... I'm sure is only because of the prayers of those who were praying for me!
Details to come.
Oh, and for those who saw the news and saw the storms that hit northeastern Oklahoma. Yes, we had to leave our mobile home last night at 11:30 at night. We lost part of the porch roof. Not much though. I'll get a picture of it, but since I don't have a digital, it will be a month or so before I get it posted. We lost electricity for a while and it was raining so hard we couldn't leave the windows open ... a mobile home is just toooooooo hot to stay in with windows up and no electricity for fans/ac or any such thing. So, last night when I should have been sleeping, I was taking cover in a resteraunt watching the thunderstorm. Which, was kind of fun watching.
Wouldn't you know it ... I tried to fix my blog entry so that the entry would be up where it belonged. So, I edited it so the pics would be smaller ... only, the code wasn't right ..so the pics didn't show up. I have 3 hours before I have to be at church for a 3 hour class. The last of a 12 week leadership class. Then I have to come home and go to bed ... to get up and be at the hospital at 6:30 for my knee surgery so they can put the knee cap where it belongs and repair the cartilege behind the knee cap.
Personally, I think 6:30 is too early ...I'm not even sure God is awake at 6:30! But, oh well. I will be spending at least one night there ..we'll see how Mr. MG & Ms. Lupus do with regards to the surgery. Dr. S (PCP) did labs today to make sure I wasn't in adrenal something or other with coming off the prednisone ... I came off it slowly and was only on 5 mgs, so I'm not worried.
I will have to fix the picture post when I get back ... in the meantime ... click on my flicker pictures to go to my flicker homepage and see all the pictures of my home town and the different area's of Mariposa ... Midpines, El Portal as well as the historic downtown that I was trying to post & the Yosemite pictures. You can leave comments here on the blog or on my flicker site.
There are stories that I could go on and on ..but some fun stories ... Triangle road ... girl scouts ..5th grade camp out ... rained, we had to camp in the triangle road church ... and our girlscout leader caught it on fire, you can't see the church in the picture, just the triangle shape of the road.
El Portal, we had a 5 mile race there every year. My sister ran it every year from 4th grade till her sophomore in high school. I ran it my 5th and 6th grade year. I'll never forget being handed my shirt that said "I ran in El Portal" and what that meant ... I'd completed a 5 mile run in the mountains!
In the Midpines pictures ..there is a KAO campground site sign ... it was owned by a friend of mine ... and we found each other on line about 3 years ago. (lost each other when my computer crashed last year ... i guess I need to find her again!)
Ok ... I hope tomorrow while I'm under I dream of Yosemite and Mariposa ... I am so not looking forward to this surgery!!!!
I will post as soon as I can, but between MG, lupus and immunosuppresants, recovery tends to be a bit slower, so don't become alarmed if I take a bit longer than what you might expect. I also tend to push myself a bit ..so sometimes I bounce back faster than people expect ...so you never know ... I'm unpredictable! (grin)
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
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 :
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
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!
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.
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!!!!!!
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 :)
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)
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.
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!
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?
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.
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.
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.
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 :
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!)