MRI

Another MRI of my brain. It is the day after my EEG. Like I have said in the past...they should just chop off my head and keep it on a shelf for them to examine. They keep running test after test. I swear I have enough MRIs of my brain to wallpaper a room!! I think I am frustrated because they can't seem to figure me out...not even a part of me out. My mom wants me to try the Mayo Clinic, but for now, I just want a break from testing. I am supposed to meet with the neurologist and radiologist on Monday before I leave for Europe. I feel like I am going to burst with so many things going on right before we leave & so many plans, so many things to remember, etc. I guess I am afraid that I will forget to do something. I just need to remember, one day at a time.

EEG

I never knew a test like this existed until now...but an EEG is basically like an EKG, but on your head. I went to the hospital, checked-in and sat and waited...wondering who will come to get me and where to go next. A older man in a white jacket calls out my name...I get up and walk with him down these halls to a part of the hospital that I haven't visited before [& the hospital is like my home away from home]. He asks if I need to use the restroom because the proceedure is about ninety minutes long, I won't be able to go after they attach the stuff to my head. I decide, it would be best if I tried [at least] to go. I walked into a very small bathroom, still thinking in my head, what is this test going to be like? I walk into a room, where he directs me into and sit in a lounging type of chair with a white sheet over it. He asks if I am comfortable and how I was feeling that day...then he moves on to as to why do I need such testing. I give him the details of why the doctor is ordering these tests and how he personally knows Dr. Ginsberg. I start to tell him my story of how I found out I had Lupus & how many doctors I see at the hospital, while he is using little alcohol pads and rubbing patches of my scalp, pretty hard and attaching these sensors about 22 of them, to be exact. He even puts them on my ear lobes, which really felt strange. I have to sign a few waivers about being audio/video taped during the testing. He puts blankets on me and turns off the lights, while he sits outside of this little white room that I was in, he makes me more comfortable by making my lounge chair lean all the way back, as if I am laying to take a nap. He said that they would encourage that I try to get some shut eye, but if not, just day dream...altho I had to keep my eyes closed. Well it was just like I took a nap in a very dark room. It was actually pleasant for once, except for the glue balls that I had to pick out of my hair afterwards. I still don't know what the results were and I am sure I will find out soon enough.

LFA Responds to Dr. Phil's Comments about Lupus on March 6, 2007

On Monday, March 5, Dr. Phil McGraw on his popular daytime talk show made statements about lupus which unfortunately minimized the serious and devastating consequences of the disease. The references to lupus were brief and were made in response to comments by a friend of Anna Nicole Smith, identified only as Frank, who claimed that Ms. Smith prior to her death confided that "she had a blood disorder and it was lupus."During the interview Dr Phil made the following comment: "[lupus] is an autoimmune deficiency. But it's not a life-threatening disease. It's something that is rather akin to arthritis. And it can cause very debilitating problems of the joints, heart, lungs, skin. All types of things, but it can be controlled very effectively with medication in most cases."The unconfirmed rumors attributing Anna Nicole Smith's untimely death to lupus have generated considerable interest in the disease. Unfortunately, media coverage has not properly explained the life-threatening and life-diminishing consequences of lupus. Statements made on the Dr. Phil Show which portrayed lupus as "something akin to arthritis" perpetuate the misimpression that lupus is just "aches, pains and fatigue." Lupus can be, and often is, a life-threatening and life-diminishing disease. LFA has forwarded a letter to Dr. Phil McGraw and the show's other senior executives asking that they correctly educate their audience about the devastating consequences of lupus. In its letter, the LFA offered to share stories submitted by many valiant individuals and families about how they have addressed the life altering impact of lupus, including suffering through multiple operations and hospital visits, debilitating pain and fatigue, organ failure, loss of jobs, loss of marital relationships and, in far too many cases, the loss of a loved one due to complications. In this way, Dr. Phil's audience might have the opportunity to learn about a disease that for too long has been under-recognized and misunderstood.
Send your comments to Dr. Phil @ http://www.drphil.com/plugger/respond/?plugID=9164

last night...Problems!

I thought yesterday was a good day...wait until the evening rolled around...it was not pleasant, to say the least. I got home, looked thru the mail & to my surprise I got a notice from my bank. I open it up [freaked out] to find that my account is overdrawn as of March 4th! I just got paid on the first and my husband got paid on the 4th! The day before I had sent out all my bills because I am getting ready to leave for Europe. After paying all of my monthly bills I had about $300 left (as I had calculated in my little paper book). Well, that was NOT the case. Not only was overdrawn, but all those bills that I just sent out, didn't get a chance to clear. Here I am freaking out!!! I turn on my laptop and look at my bank statement for the month. There were some random charges, but not enough to make it crazy like it was to be totally overdrawn, plus bank fees, what??? After looking and looking...I couldn't figure it out. I went back a month & I found it. My best friend from highschool came out to visit me in Colorado for my big 30th birthday. I had my cousin pick her up from the airport and drop her off at my work. From my work, we go to Enterprise to rent a car. Her brother and cousins were flying in later that evening and there was no way we could all fit in my SUV. There was something wrong with my friend's credit card, so I used my bank card. The lady at Enterprise said that when my friend's brother flew in, that we could come back and swap it out for his card. So the next morning, first thing, we go back to Enterprise. I didn't get out of the car because they didn't need me. Well now that it is almost twenty days later...I found out that Enterprise ran my card and withdrew $250 from my bank account, but never deposited any money back. I had to tell my husband. Who I have to say was not thrilled to say the least. We kind of avoid each other, as I stress out in my bedroom, thinking, what will I do? I can't go grocery, buy gas or even pick up my medications? As I am freaking out...I am talking to another Lupus sufferer on instant messaging. I met her about a year and half ago, but never really knew her until recently. She was such a genuine person, that she offered to lend me money. I had to say no, but thanked her. I couldn't believe a person that I barely even know would lend me a thousand dollars. That was just too much. She is living with her parents and is saving to move out. She just got a job & she is such a strong person. I admire how she always speaks her mind no matter what! She is so tough & is teaching me to grow a back bone. But I was overwhelmed by her generosity. I try to change the subject...then my husband & I ended up talking about the finances [again]. I got off the computer and talked with him, it ended badly, he was angry and went into my office to sleep. I finally take my sleeping pills and some xanex to calm myself because there isn't anything I could do last night, better yet, I wasn't even sure what I was going to do today. I laid down in my bed...next thing I know, I'm gushing, like good old "Faithful". My nose is bleeding everywhere. I got blood on the carpet, the side of the bed...I finally get a plastic bag, my husband comes out to assist me. He gets cotton balls and tissue and it was continually gushing out, literally. He ties up my hair while I try to hold something on my nose...I go to the sink to try to clean off [as I shoved a cotton ball up my nostril], well blood continually comes out, even with the cotton ball. I notice that my teeth have blood all over them too. So I brush my teeth, finally get the nose bleed to stop, wash my face, sinks, clean up the carpet...ugh! I was tired. I finally went to bed with my husband holding my hand. When I get stressed...it seems like I just bleed, literally. I wanted to die. I woke up this morning, feeling achy, horrible, just confused. I drag myself to work, make the phone calls to Enterprise and other places...to figure out the finances. Apparently, Enterprise just charged me for the car rental because my friend's credit card was declined. I am sure it was embarassing for her, but for me -- I am stuck with huge fees that I owe my bank, plus I am overdrawn. My husband and I gather up about $300 to put in the bank this morning. I think that almost catches up the fees that were paid out...but then the rest of the checks and debits waiting to clear??? My husband doesn't get paid until Monday. So from now until Monday what are we to live on? I won't be able to get my prescriptions. I have a doctor's appointment today, that I am seriously thinking of cancelling [because I have a $40 copay]. I have to be admitted to the hospital for tests on my brain [that I want to cancel, but I don't think I can]. And yes, I have to drive to work, with what gas, I'm not sure??? I am in need of a miracle. It seems like if a bad thing is going to happen, it's gonna happen to me. This last month has been horrible...actually this whole year...and it is only the beginning. I have been seeing doctors so much, plus meds...it comes out to about a thousand dollars a month out of pocket [at least]. Even if I wasn't having a flare...my costs are about $400. Then we have that problem with our mortgage on the ARM [adjustable rate m....] (hmm...I don't know what the "m" stands for?). I have found out this morning that I will also need to attend parent/teacher conferences on Thursday night, which I didn't know about until this morning. Just all kinds of things being thrown at me, all at once!!! I need to "de-stress," yea right! My head is pounding [again]. My husband called me and just told me that he is going to take an extra shift at work for the money - so now he will be working every weekend & has been looking for a part-time gig @ night. I might not be able to see my husband, the man that keeps me sane [sometimes]. What has happened? It seems like my whole world is collapsing before my eyes. I wrote my mom an e-mail and asked if I could borrow $400 [with collateral, of course]. I have not heard from her, which doesn't sound too good. For my collateral, I am giving my collectable two dollar bills, plus a Chinese fan that I am very fond of, but I know she has wanted.

Tuesday...

Today is a better day. My best friend from Saipan called me to check up on me...I have such great friends. I have read on many forums that people with Lupus have had hard times keeping friends. I don't seem to have that problem, although we have an understanding that I can be moody & well . . . [like aren't we all in some crazy moods??]. But majority of my friends are friends that I have had for many years...longer than I have known my husband. I still meet new friends all the time and they are just as enjoyable.
I got my Medic-Alert bracelet today. I put it on, well it's a little too big [so I called up my handy husband] and he'll fix it when I get home. [Later, I'll take a pic and post it with this blog], ha!
The other litigation secretary called in sick today...and I can hear people coughing and sneezing...I just want to curl up. I really don't want to get sick, especially since I'm leaving next week. I felt like I was fighting off something...but hopefully I just last this last week without catching anything [please!!]. Last time I went away -- in December, to Florida, I was soooo sick. I hated it. Since she is out today, I am the only litigation secretary left, but the so-called regular [non-litigation] secretary & her a chum chum, both are pretty defensive if I do work for their attorneys. I guess if they want to be that way, they can struggle with it. Ha!
I have yet to pack...I guess I am being pretty lax about it. I usually pack about now & have everything ready to go & info already made into PDFs for electronic storage [in case the inevitable happens].

Emotional

I have been so emotional...my cousin [dazed & confused] made me so upset today that I cried until my nose bled [all over the bathroom floor] & I started to bleed in other places. My head aches so bad that I took a vicodin and later a vicoprofen so that I could drive myself home. Now my stomach is acting very strange, making some wierd noises. I haven't eaten dinner because I can't eat...I am so stressed out. I need to de-tox [de-stress]. I am seriously thinking of just pushing all of my testing for epilepsy until after I return from Europe. I think that I just have too much on my plate. Why does our families have to be so judgmental on us? Why do people judge us so much? I am sure I have done the same thing...[unintentionally], but why do we do it? How does anyone know how it is to be me? No one does...I don't even know how some of my friends and family feel, although [most people think I do], but I have no idea. We are all so different, in so many ways. My husband was so upset that I let my cousin get to me. He said I didn't need the added aggrivation and stress right now. I know he is looking out for my well-being, but I can't control how I feel or how emotional I get. [Although, I wish I could control it.] I am on instant messenger with a friend while I am typing this...& she is telling me about how her friend with Lupus saw Dr. Phil's show and how Dr. Phil made comments on how "Lupus is not life threatening." She is really frustrated and upset about it. And frankly, I am too. If it wasn't life threatening, then why would treatment be so toxic? But of course, I didn't see the show so I can't really comment. But people that don't have Lupus can't judge us. Again, I am brought back to my original story, why do people judge each other. Who gives us the right? I guess right now I am just frustrated about so many things...and I am going around in emotional circles. I wish life could be easier, but it isn't. Life is supposed to be a challenge, right?

Friends Playing

How come we can't just be like little doggies? Have fun and play...without a care in the world. I brought my doggie over for playdate with little miss Aiko. Aiko just took poor Maxwell down. She was biting his ears, lips, etc...and he just let her. Ha! They love us no matter what, whether we have time for not...they love us. Why can't our own families love us just the same?

Links

I tried to add blog links: Lupus Foundation of America = www.lupus.org & Lupus Foundation of Colorado = www.lupuscolorado.org. I don't think I was sucessful b/c I don't see if on the side. But I have posted it here...as helpful LINKS!!

wireless

My whacked family...& the cell phone world...why are we so dependent on wireless? Everything is wireless these days...people can get a hold of you, basically in your sleep. So my husband & I are going to invest in buying new cell phones, yet again. How many does this make it? Too many. We had the feature of getting personal email, text, etc...put on our [so-called] phones. So we took the deep plunge. As if my family didn't get to find me as it is already...they reach me by text, im, email, cell or by phone...My daughter desperately wants a razor, so I will give her mine, as soon as I receive my new phone. She is already on a rampage to get my phone painted [lime green]. Yes, lovely, huh? She was never one to be just Ms. Plain [which is great, b/c she is little Miss Independent].
Tonight my family is planning on going over to my sister-in-law's place to have korean bbq. Yes, another evening at that place...well of course, I didn't go last night...& they ended up coming home early and blaming me [b/c I didn't go, said I wanted to sleep]. Everything is my fault, b/c I didn't drag myself over to be Ms. Grump! Hahaha!
I tried to get a hold of my fellow Lupus sufferer, but I have yet to get a hold of her. I hope she is okay. She is usually online 24/7, but I haven't seen her online lately.
So my husband kind of looked over and saw that I blogging about our "family" & he said...I live with lupus...b/c of me. [Rebar] But so true. Even my daughter said the same thing. I guess b/c they ALL have to live with me. I <3 my [immediate] family. They make me laugh for no [apparent] reason.

Depressed?

I have yet to leave my comfortable surroundings of my bedroom. Am I depressed? Maybe. I thought that I have come out of the depression "mode", but maybe I am slipping back into that [ugly] so called world. I have been trying to be optimistic, but after a while...it is hard to stay optimistic. Diagnosis after diagnosis...can there be anything more that they can find on their way to make me comfortable? Probably. I'm tried of hearing the words "complicated", "complex", "unsure", etc. In reality, I see at least one doctor every week. Some weeks I see two or three...lucky, huh? I would say it...you would think they would know what to do with me by now, but they don't. I have a Nephrologist, Rheumatologist, Internist, Opthamalogist...etc...therapist...psychiatrist...I recently stopped my therapy appointments. I had such a hard time getting to those appointments. I have been seeing a therapist every week [at least once a week or more] since 2004. I have been told that they would [in their opinion] hospitalize me. Of course in a psychiatric hospital. I have told them that if they decided [in my best interests] to put me in a place...they would have to deal with the ramnifications of me being separated from my family. I would be CRAZY if I was separated from my family. All the times that I have been hospitalized, my family had to live, sleep & breathe hospital until I went home. Was that selfish of me? Yes, of course. I don't go anywhere...without my husband or my daughter [my two constant people in my life] that keeps me sane. It's funny but the last time I went to Paris...I had to bring a dirty shirt of my husband...because of the smell [yes, I am strange]. My husband & daughter have a distinct smell on them...one thing my daughter could never do...was try to surprise me, because I can smell her a mile away. I might have lost one sensory, but my smelling one...has increased [by far] amazingly.

Stubborn me!

Thank goodness it is a new day! Yesterday, well, as we all can tell, it was not a good day for me. I'm glad it's nice out & everything!! My husband & daughter has taken my two labs [my babies] for a walk down to the local coffee shop. I decided to stay home & bum around [again]. I can't believe it will be Monday tomorrow!! My weekend just flew right by me...
My mother just called to check in [again]. Of course, bringing up the european trip [again], trying to tell me what to do [again]. How old am I? I think I have earned my own responsibility here...& yet I am doomed to being treated as a child. I have told her, yet again, if she deems that she can do better, then do it yourself! Mind you, this is all over airport transfers, & I hung up. That's the last thing I need!
I have this odd feeling, as if I was talking in my sleep again. I want to call my girlfriend to see if I talked to her or not last night...I have a tendency to sleep walk, talk, or whatever you might call it...I just talk with a slight slur. It is pretty scary. I have done strange things...like bid on ebay...exchange money...online banking...take off my clothes...I assume it is because my body is so tired, but my mind is still racing around...trying to get things done...