Dr. Suess

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

Saturday, May 24, 2008


Ok, I am back.

My computer is totally fixed.
Blog problems and all.
The ramifications, may be longer standing.

Benjamin had let a neighbor into the house to use a photoshop program we have. In doing so, she also visited a few of the favorites

Using the program, was messing with the virtual memory of the computer. So, we had told the boys we couldn't use it until it got properly installed. She'd come over and use it, the virtual memory would be all screwed up, then my blogs would be inacessible to me ... at times, or only partially accessible at other times.

Quite a frustrating week on the computer.

I have on my computer, as well as had told her about. I don't have them saved in a 'secure' space, we share a home address with the family. She accessed one of the blogs I read, got mad at the post, and trolled it anonymously.

She lamblasted the poor girl to bits. What's worse (and somewhat sick) is she took part of my story, and twisted it beyond measure!

Enough of it was there, that I could recognise it. Some I know she's never been told by me (sons? read my blog? husband?) others I know I've told her. Some is stuff I know has happened to her. It is an angry diatribe at this poor girl who was venting on her blog. I still don't know if it came from my IP address or not, but it did come from my area.

The thing that made me first suspect her was the ' surgery to cut my chest wide open' with no reference as to why. The implication being heart surgery like most would have for a transternal operation. (Without the use of the word transternal) Only, mine, was a thymectomy, my heart is fine. It is quite scary realizing I've got a fruitcake living across the street to me. Again. (just realize I had a weird neighbor before, that was almost this bad.

Guess I need to put those skills into place again. She wormed her way into the house while we were gone as well. )

So, my sincerest apologies to EE at BackboardsandBandaids.Blogspot.com
She is a young EMT with plenty of fire, pregnant, and working. She said this didn't bother her, it was 'blog fodder'. It bothered me greatly.

In part, because I feel like I have been violated. It did take me most of the night to realize that was part of the equation. But also, because I don't just read her blog, I talk to her on IM and I play scrabulous with her on facebook. She's not 'just another blogger' to me. I admire what this young girl has done with her life.

For someone to have taken, what is supposed to be 'me' and do what is so out of character for me (as all my blog friends, as well as personal friends could attest to) feels so, what is the word? Foreign? Violated?

I don't have any recourse because my son let her in to use my computer. I did not have access to the pages private (besides, I'd given her a list of my favorite medical blogs! She supposedly has an interest in 'doing something medical' when she gets on her feet.)

EE did a great job of standing up for herself. Her blog friends did a wonderful job of defending her. I admire her greatly for the minute she saw me on IM asking me. (without, mind you, accusing!) We got to the bottom of it rather quickly.

I am left reeling, with flashbacks of the "Tomato" fiasco of a couple years back. If you weren't a part of that, please, just let that one go. If you know, then you'll understand.

Edit: I have a protected, prepaid credit card on Paypal that is used for children's ministry. I decided to check that. It, also is on the favorites page that my blogs are kept on. Sure enough, purchases that I did not make have been made. Walmart. Clothing for a boy and a girl. In young children's sizes. About the sizes her kids would wear. Less than $25 taken off. (which, there is only $50 on the card, to get more than $25, needs the children's pastor's ID as well because it's the church's money). Now I guess I have a real decision to make. This goes beyond a stealing of a reputation.

ஹாய் Vijay

இ அல்வய்ஸ் வாண்டேது டு சதி இன் தி உநிடேது ச்டடேஸ். உண்டில் ஏ பெவ் எஅர்ஸ் அகோ வென் மி பச்டோர் விசிடேது இந்தியா. வென் ஹி திட், இ பெகமே பாசினடேது வித் தி குன்றி அபிடேர் இ இண்டேர்விஎவேது ஹிம் போர் ஒஉர் தேநோமினடிஒன்ஸ் நேஷனல் மகஜினே.

நொவ், இ ரேஅல்லி வான்ட் டு விசிட் இந்தியா, ஈஸ்பெசியால்லி டு விசிட் விஜய் அண்ட் ஹிஸ் பாமிலி. தி எலேப்தன்த்ஸ் வௌல்ட்ன்'த ஹுர்ட்!

Tuesday, May 20, 2008


I've lost my blog!

Under Construction

I'm trying to re arrange my blog. Got rid of a couple of things ... and moving others. The count down clock has been removed from the HTML code, but hasn't quite disappeared from the scene yet.

I tried to move it to the bottom, but it wouldn't move, so I tried to remove it. It won't go. I guess it likes my blog.

So, please excuse me and bear with me as things change around a bit. Hopefully it will lead to a little less cluttered feel.

Monday, May 19, 2008

Frustration Station

This year I have been started on several new medications. (As if I wasn't on enough before). They did not replace old medications, they were added to my regimine.

A few years ago, I was sent to a rheumatologist by my PCP with her hoping to get me started on Plaquenil for the lupus. She felt that the drug required more expertise to manage with my complicated medical history than she wanted to manage.
I went to rheumy ... he felt the drug was too risky ... put me on steroids and steroid creams. (Plaquenil is commonly first line drug for Lupus ...add Myasthenia Gravis into the mix, and you've got a different colored horse)

My PCP was frustrated, but she went along with him. I ...the ever faithful patient, listened to the docs and went along.

Fast forward ...rheumy leaves town ... I'm left with no rheumy ..my Dermatologist ALSO leaves town to go teach in Texas ...and I go to a new dermatologist. (after almost 3 years. Not wise, I know, lupus, history of skin cancer. But my former Dermy had been my dermy since SAMUEL was 6 months old. He was 15 when Dermy moved to Texas. I pouted and didn't want to find a new one)

New dermy is not only good with skin cancer, but QUITE experienced with autoimmune diseases that effect the skin. I'm in there with a red butterflied face (which was only kind of pink and only sometimes there when Rheumy was here, thus the willingness to use steroid creams).

New Dermy doesn't like the high steroids and the constant steroid cream to the face. Hind sight, I realize that my skin issues had significantly worsened over time. Rheumy may not have intended for that much steroid cream to be used either. Ooops.

So, anyway ...she starts me on Plaquenil. I'm fine with that. I know that my PCP had wanted that several years ago anyway. Besides, it may lessen the amount of steroid dose packs etc ...

So here I am ... less than 2 months on it and my eyes are driving me nuts. Blurry vision, double vision, tired (eyes) all the time ... my eye glasses have gone from a 1.00 to a 2.00 (drug store version) just to be able to read. I've gone from using the glasses at night when I'm tired, to not being able to read anything without them.

It's a side effect of ... Plaquenil AND Requip (which I started in January at 2 mg)

BUT ... it is also a MAJOR symptom (a primary symptom) of Myasthenia Gravis.
The reading glasses ... I'm 43. At some point, I was going to need reading glasses ... it happens to the best of us. It evidently is a fact of life.

I've also been started on metformin ... the eyes could be an issue related to metformin ... or any of the issues related to why I need metformin.

Oh yeah, my crestor went from 5 mg to 20 mg since November. I have no idea if the eyes can be effected by Crestor or not.

I'm thinking my stomach issues are probably more in reaction to the significant changes in my drug regimine than an ulcer or endometriosis ... as I've thought about it ... Adding all those meds and changing doses in such a short time ...whose stomach would WANT to handle it?

Metformin and Requip are both very hard on tummy.

At some point ...someone has to cry UNCLE and say enough. I think, my body is doing just that. It may be sick and have it's issues, but there are only so many chemical fixes that can be done without causing more issues!

Sunday, May 18, 2008


I've been told I need to check in. Sorry!!!

I've seriously planned on blogging. Really ... I need to. My son graduated from high school. That is worthy of a blog post. It begs of a blog post.

I freak out everytime I go to blog about it!!

Between that ..and the fact that it's been 25 years since I graduated ... I'm feeling just a bit ... um er ..uh ..er ...middle aged!! Ok, so I am, but that *IS* beside the point.

I have an email list of friends that I've had since I joined the WWW in 1998. It is nicknamed TSBS (tourette's syndrome and yes, the BS is exactly that) It is a small group and we are very tight nit. When our children were little, we clung to each other like a spider web. We were each other's life line, sanity, and survival ... we've seen each other through marriage, divorce, affairs, illnesses, deaths of parents, the near deaths of a spouse (mine) and serious illnesses of parents and spouses. We have held each other's hands through IEP's, fights with neighbors, bosses, job losses and life changes ... through it all ... we've been there. For several years, we did a christmas ornament exchange, those, are treasures beyond belief!

We, for several years, just the 15 of us, kept a volume of emails in our group of about 250 emails a day.

As our children have grown and life has settled for most of us (2 of the children still have SIGNIFICANT Tourette's, the rest, as the medical community promised, have either outgrown it, or symptoms significantly subsided) we still keep in touch. There are about 8 of our core group left ... and our volume of mail have dropped to about 25 emails a month. Between all 8 of us.

However ...nothing in life seems *real* until I have told them. And or blogged about it.

So ...since I have not told TSBS about Samuel's graduation ...and I have not blogged about it ... it's not real ... right?


Thursday, May 08, 2008

Query Opinions ... weighy issues.. ..confusion

I was scanning my email box and weeding out the spam ... I do that a few times a day. I almost deleted the email without reading it.

I didn't recognise the return address.

The subject line didn't catch my attention.

I just about hit the delete ..but something made me decide to look at it.

A stranger. No one in particular. Approaching me, because they'd been given my email address, but they didn't say who gave it to them. They wanted my opinion, advice even ... and I'm sitting here wondering what to tell them.

A few years ago ...I was rather firm on my response.

They were diagnosed with Myasthenia Gravis .... and they want to know if they should have a thymectomy.

What bothers me ...is they didn't say in their email if their doctor's are recommending it. They haven't said if the CT scan or MRI has said it's enlarged or if there is a thymoma (if thymoma is there, the it is a given, get the sucker out).
The enlargement may not even be obvious until it's out ...and even if it is enlarged, does that really *MEAN* anything?

They didn't say if they found me through the blog ...through the MG foundation ...our local MG chapter, my doctor (who has my permission to refer patients who are worried)

They just want to know ... I have Myasthenia Gravis and should I have my thymus gland removed ...and what technique should I 'insist' the doctor's use?

Well, first, it sounds to me like they've already decided to have it, they just don't know if they want transternal (the method I had) or cervical.

I've also read of a new method, that I wouldn't dare blog about because I only read about it once ... something about going in the side of the ribs. It sounded like a dream to me. Oh if only that had been an option for me 16 years ago!

WOW!! I just realized, June 2 will be 16 years since my Thymectomy. Medical science has changed dramatically since then. I went into the hospital with them telling me I had a 60% chance of remission ... by the time I came out of the hospital 10 days later, the study that was expected was released ... 60% was still on the page ... 60% of patients who have a thymectomy with in the first year of onset in the disease can expect to see 'some improvement in symptoms' ... a far cry from 60% chance of remission.
Those who'd been sick for over 2 years at the time of diagnosis (like me) really didn't have much expectation for help. In other words, had the study been released just 3 weeks earlier ... the surgery would not have been recommended for me.

My thymus was enlarged ... significantly so. What that meant for me, I never have learned. I figured, it was just as well that I got it out anyway.

I then, spent the next 10 to 13 years saying that I would do WHATEVER it took to put me into remission ... EVEN IF IT FAILED.
I would recommend the thymectomy ...and DID to many who asked my opinion when their doctor's flat out insisted and they were terrified.

I would tell them that all I could think about was the 'what if it was the one thing I could have done, and didn't do .... it was worth it'

But now ... 16 years later ... research isn't holding fast the recommendation. There really needs to be hard fast proof for a call for that thymectomy. That "what if I'm the small % that gets lucky" isn't quite enough for such a drastic surgery (especially a transternal surgery! They cut your chest wide open for crying out loud!!)

Am I just getting older and understanding risks more?
Am I just getting more pain and because of the surgery ... I've got a significant case of chostochondritis ... where the wires are, and the scar tissue ... it HURTS when the rain comes. When the lupus flares ... the chest wall is a significant sourse of pain for me. Breathing often causes pain when breathing should come as natural as ...well ... breathing!

Is my questioning the 'go for it just in case!' ability to fight this monster (MG) because I've realized that the thymus gland isn't part of the MG monster ... or is it that the risk comes with a monster of it's own down the road?

What do I tell this person who wants my opinion with not enough info for me to form an opinion!

If it were me ...today ... and I didn't know what I know now ..what would I do (assuming I still had my thymus and they wanted to take it)

I also ... was told, and I have *NO IDEA IF IT IS TRUE* that those with no thymus ..cannot have bone marrow transplants ... yet ...in recent months and years ... you read the national research ...bone marrow transplants for autoimmune diseases for lupus and myasthenia gravis .... will I be excluded because I had a treatment that didn't work.

If, that is true ..the patient has no enlarged thymus, and no thymoma ... I'm afraid my answer would be a resounding no. If bone marrow transplants are ever in our futre, do not ruin your choices for future treatments that may act as a cure or life saving tactic.

I guess, I should go do some research to back up my contemplation. After my son graduates.
Between now and then ...this is purely from memory and off the top of my head!!!

Monday, May 05, 2008

I am WOMAN ... Come walk with me!

I posted about this, and will post again ... On May 11 many women across the nation are going to be making steps ... one step at a time ... or many steps together to get themselves healthier ...

In the Woman Challenge to walk virtually across the country to a better health.


It isn't about being skinny, or some crazy weight loss phase ... but about living longer ... having healthier joints ... and about living to see our grandchildren graduate from high school and seeing their children being born and graduate from high school!

This week ... My mother has a birthday ...and my son graduates from high school and I celebrate 25 years from my high school graduation ... but my body is incredibly unhealthy.

I've spent the day feeling like firecrackers have been set off in every joint and every muscle group.

While it has little to do with being out of shape and everything to do with an immune system gone haywire ... . being IN shape is my only real recourse to survive those fireworks.

I do know that I worked out 3 times this last week ...and if I had not ... I'd have been bedridden with those fireworks ... instead of just in pain.

Tomorrows work out, if the fireworks continue, will be limited, but it will take place .... and it will keep the flare that is happening from getting worse than it could. OR at least, that's my theaory.

I have many many blogbuddy's ... and many many real buddy's who read my blog ...

So, I challenge you women ...and you, who love women ... Join with me ... starting MAY 11 ...

Let us Blog Buddies ... make a group to Virtually track across the country ... and Bust those bodies that often fail us ... if you have a healthy body ... keep it that way and make it even healthier ...

If it's not healthy and like mine ... it's fighting lupus, myasthenia gravis ... or you have to fight some other chronic monster like Multiple Sclerosis or Rheumatoid Arhtritis, Fibromyalgia, Asthma, Cancer, recovering from Cancer, Elnors-Danlos Syndrome, Multiple Connective Tissue Syndrome, Any number of cancer, Alzheimers ... or you've lost a loved one to any of those diseases ... Join me on May 11 to get fit ...and get healthy ... get up and moving ... Join me ... and register to my Group Blog Buddy Body Busters at

Here is the route we'll be taking :

Join in and then email me at Pearlsofaneagle@aol.com and let me know you've joined!! Keep your progress logged in ...and let's keep each other encouraged!!!

Personally, I'm dedicating my trip to my dear friend's dauther who passed away from Brain Cancer ... Kylie Bug, this is for you!
I know you're not supposed to put your number on the web, but ... I'm going to do it anyway ... if you have any questions
My number is 918 833 1552

Sunday, May 04, 2008

facial recognition

Insomnia setting in here ...

I came across this interesting test ... Being one who has trouble even being able to give a description of my loved ones ... a sister, brother, my own CHILDREN ... I found this test facinating ...



Out of 72 faces, you correctly identified 39.
In other words, you got 54% correct.

On our previous version of this test, the average person with normal face recognition was able to recognize about 80% of the faces. If you correctly identified less than 65% of the faces, this may indicate face recognition difficulties.

For more information about face blindness and other face recognition difficulties, please go to http://www.faceblind.org/.

ok, so they think I might have difficulties ...heh? yeah, I knew that. Always have had. From childhood. I have no clue what causes it.

It will be interesting as I go through school in psychology to see if I can improve on it, or find better ways to cope with it ... I will definitely need to find ways to cope with it. 0.O

Hat tip to Menapausal Moments for the confirmation of my facial recognition issues ;)

At least I know they're real!!

on the famous persons test I got :

Out of 30 faces, you correctly identified 14.You were familiar with 29 of the people in this test.If we exclude the ones you were unfamiliar with, you got 48% correct.

On our previous version of this test, the average person with normal face recognition was able to recognize about 85% of the faces they were familiar with. If you missed more than half of the faces you were familiar with, this may indicate face recognition difficulties. For more information about face blindness and other face recognition difficulties, please go to www.faceblind.org.

Thursday, May 01, 2008


I think ... I have an ulcer.

or ... I think it might be endometriosis ...

or worse ...both.

I'm stalling something awful on going and finding out.

I don't want to know for sure.

My ability to be upbeat and be a 'good patient' is wearing very thin.

Very very thin.