Delicious Ambiguity

Gilda Radner:

I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity.

Gilda Radner was diagnosed with Ovarian Cancer in 1986 and passed away in 1989 at 43 years old. I read that she went through excruciating operations and chemo treatments.  And in the end was afraid to receive pain medication because she thought that she might not awake from it.  I don't know why I am writing about her today in my journal except that I was going over some stuff in my favorite places and came across this and liked her quote and then I did some searching on the web about her.  I remember her death and I remember her life.  I loved her on Saturday Night Live when I was younger. (Gee, how long ago that seems) Her characters Baba Wawa, Emily Litella (based on her childhood nanny) and Roseanne Rosannadanna always cracked me up. 

Gilda was told she was in remission and wrote a book about her life and struggle with cancer.  She called the book "It's Always Something".  She wrote the book for cancer suffers and she  used her humer to overcome the pain.  "It's Always Something" was from her days portraying her character Rosannne Rosannadanna.  "It's always something! If it's not one thing, it's something else!" I need to read this book.

Please read the entire article that I have paraphrased from below.  It has inspired me.  Thank you.

http://www.wordiq.com/definition/Gilda_Radner

SOME HUMOR

Now I lay me         Down to sleep        I pray the Lord          My shape to keep.     Please no wrinkles        Please no bags            And please lift my butt         Before it sags.  
                       

Shake Rattle and Roll

I'm getting shaky again.  I am noticing it in my walk.  It's how it started that Sunday I went to the hospital.  I don't want to go again.  They did nothing for me there.  Dr. Cardello told me that if this happened to me again I should call 911.  I don't want to.  Maybe it will pass.  Maybe it won't be as bad as it was last time.

Christopher Reeve

Christopher Reeve died on Sunday.  And, although I disagree with his position on a few things I do believe that he was a heroic man.  His life was changed drastically after he broke his neck in May 1995 when he was thrown from his horse.  In the article I read this morning it said.......

A few months after the accident, he told interviewer Barbara Walters that he considered suicide in the first dark days after he was injured. But he quickly overcame such thoughts when he saw his children.

"I could see how much they needed me and wanted me... and how lucky we all are and that my brain is on straight."

But what got me was that he said .......

"I refuse to allow a disability to determine how I live my life. I don't mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery," Reeve said.

I have been feeling sorry for myself lately. Grieving my independence over my inability to drive.  Gosh, he couldn't even walk.  I can walk.  I cried yesterday, actually sobbed to Gary because I felt useless.  I felt like I used to be the caregiver and now I was the one who needed the care.  Christopher Reeve needed 24 hour care.  I don't.  God does work in mysterious ways.

Anything written above in blue italics was copied from the article I read. To view the entire article about Christopher Reeve's death and where I copied the picture above from please go to.......http://aolsvc.news.aol.com/entertainment/article.adp?id=20041011023709990003

I Wonder

It's October and October is Lupus Awareness Month.  How many people do you know who are actually aware of what Lupus actually is? Most people have no idea of what Lupus is.  And, if they know they think its some form of arthritis that a motrin or an asprin can cure.  They have no idea what it actually is.   I started to write stuff about Lupus a few months ago but my mind became so confused I  had to stop.  It became difficult for me to continue to do it.  You see "My Lupus" affects my brain.  It's called Lupus Celebritis.  That along with the Antiphisiploid Syndrome (APS) screws me up.  My new rheumi doesn't really know what is happening with me.  He hasn't yet seen me with the criteria to diagnose me with Lupus.  Oh, he has seen the mess my brain is in just by looking at my MRI.  And it's worse each time I have a new MRI. (Time to send for the illegible records from my old rheumi. Let him try to make heads or tails out of them.) My PCP understands my concerns and has seen me at my worst.  He has seen my rashes (facial and body), my nasal and oral sores, joint pain, sensitivity to the sun, flouresant lights, and of course as everyone knows my seizures, and protein in my urine, etc.  We spoke about this on Friday.  Both of them agree that someone with a positive APS may take years if ever to get a positive ANA.  I am caught in limbo.  They keep on increasing my meds.  My seizure meds, pain meds, etc.  Does the rheumi realize that ever since he took me off the CellCept these changes in my health have been occuring.  Yes, the CellCept has made me anemic and given me a mild case of asthma.  But there has to be something else to help me.  When I asked him about it, his response was I haven't seen you with the necessary diagnostic criteria.  Here I am at square one again.  I really do like him.  He is open and honest.  More professional than my last rheumi.  More approachable.  Maybe once he gets my records and/or speaks to my PCP something will be done.  But for now I am so very tired.  The increase in my seizure meds and the stupid increase in my prozac makde me tired.  They tell me that these things will help.  What would happen if I just went off everything completely?  I wonder, could I feel worse than I did before I crashed?

WHATEVER

Sunday I got sick again.  Who knows what happened to me. I was pretty okay when I woke up.  I have been feeling confused for sometime now.  My neurologist is aware of this.  Hence the neuropsychological testing.  But, this was really crazy.  I also have been falling to the left a lot lately too.  No explanation for this either.  In the shower I became very confused and disoriented, felt like I was falling backwards.  Knew enough to get out.  Sitting on my bed I felt scared.  I couldn't get my words out.  Gary called my neurologist who was not on call and we spoke to the one who was on call.  A stupid idiot he was.  Asking me all sorts of questions I couldn't answer.  He finally said call 911.  Gary did.  I was in the hospital for 4 days.  They ran tests.  My primary care doctor came in.  He told me that the tests looked fine.  Nothing different on my MRI from June.  The CAT scan showed no bleeding in my brain.  Well at least I have a brain.  Because there are times lately I really think I don't have one.  My thought process is lacking most of the time.  Making decisions has become very hard for me lately.  Doing much of anything is difficult.  This illness has bankrupted my body.  This unhappiness is not simply the result of what this disease, illness, sickness, malaise" or WHATEVER is doing to my body. But the lack of what the "Specialists" can do to help me.  they tell me I am a "Science Project".  I have Antiphisiploid Syndrome.  My brain is a mess. My coumadin levels have yet to be stabilized.  It's been 18 months.  I'm in pain most of the time.  My body is experiencing paralizing fatigue.  I may or may not have Lupus.  Sometimes I do they tell me, sometimes they aren't sure.  So I was in the hospital for 4 days.  They were really nice to me.  Neurologists, My Rheumatologist, My PCP and the Staff Psychiatrist all came to see me.  They called in a Psych Consult because I cried a lot.  Heck wouldn't you?  Oh and my room mate was a 57 year old woman with Alzheimer's Disease.  How encouraging was that? Until now I have gotten up and went through my day with gusto.  Ignoring the pain and fatigure, I did what needed to be done. But now these confusion episodes have been happening more and more often.  I am afraid that I will be somewhere become confused.  When too many things are happening at one time I become very confused.

So I go for my follow up visits with my PCP and to the Coumadin Clinic today.  My Primary Care Doctor whom I love dearly tells me Gary was right to call 911 and if this should ever happen again to do the same thing. I ask why did this happen again?  We just don't know.  My doctors have taken to that familiar "Puppy Dog Head Tilt". He suspects this will occur again.  Until we get this straightened out.  Did you call your neurologist?  Nope, not yet?  Next week, I will.  Okay, see me in a month.  In my mind I am saying......  Who exactly is We?  Off we go (I'm no longer driving anymore.  For fear that I will have another episode and either kill someone else or myself. So my son drives me around.  Talk about grieving one's independence.) to the coumadin clinic.  We have some time in between so he wants to make a stop at the Mall.  I say okay.  I can handle this.  (Or can I?)  I have taken my Xanax.  Let's just run in so I can pick up a holder for my cell phone.  Okay I say.  I decide I will sit in the food court with a cup of coffee and a muffin.  There is no running in any more for me.  But he is my son and I need to try to keep some normalcy in his life.  It only takes 10 minutes.  We are fine.  We go to the coumadin clinic.  My levels are good.  But, Amy, my nurse practitoner says she hears me slurring my words.  We talk a bit and then she decides to print out another instruction sheet with my coumadin dosage because she too believes I will end up back in the hospital.  She tells me she will discuss the possibility of switching me from coumadin to lovenox injections.  That may help.  I have to go back on Monday.  I am not really happy right now.

No Subject

I'm tired today.  My neurologist has increased one of my seizure meds Trileptal because my seizure activity has increased. Not only has it increased but they are different types of seizures. I have to go from 300 mgs twice a day to 300 mgs in the AM and 600 mgs in the PM.  Then to 600 mgs twice a day.  I have to gradually increase this after a week of the PM increase.  Okay so now I can fall asleep earlier than 7 PM.  Hey would you like to know what my meds consist of.  Okay I will tell you.......

AM Meds:

Trileptal 300mg Seizure med (for now)

Topanax 200 mg Seizure med

Namenda 10mg (memantine) Lupus Celebritis ~also used to treat moderate to severe Alzheimer's Disease

Celebrex 200mg for pain ~~ the next one to be recalled

Prozac 20 mg ~~ Can you guess why?

Prevacid 300 mg ~~ self explanatory

Xanax .25 mg ~~ It's an anti anxiety, but I take it for a tic disorder.

B12 Injections depending upon blood work

Multivitamin

Vitamin E 600 i.u.

Chewable C-250 mg

PM Meds

Coumadin dosages vary depending upon INR levels

Trileptal 600 mgs

Topamax 200 mgs

Nameda (memantine) 10 mg

Prozac 20mg

Celebrex 200 mg

Prevacid 30 mg

Crestor 10 mg cholesterol

Folic Acid 1mg at risk of heart disease because of APS

Acidophilus with Pectin

DHEA 25mg

PRN Meds

Lovonex Injections (when INR levels become too low I need to be protected and self inject Lovonex which is low molecular weight heparin.

Tylenol 4

Celebrex 400 mg

Percocette

Fiorional

Meds on Hold

CellCept  due to anemia

And, yet I function.  How?  I still can't believe it.  I wonder if I will be able to after the increase of the Trileptel.   The neuro tells me that maybe wel will be able to stop the Topamax and just go with the Trileptel.  I dunno.  I didn't tell her yesterday but I believe that the Topamax is keeping the head pain somewhat at a tolerable level. 

Just a note:  Check out Loretta's journal this month, she is writing excellent stuff about Lupus. It's  Lupus Awareness Month!  You go Loretta.  If it weren't for my Dear Friend Loretta,  I wouldn't be writing this journal at all.  So do what I say and read her journal okay. I really think you should have a peek. Here is the link ~~~> http://journals.aol.com/lrttklly/LupusLeftovers