New Diagnosis

I can't believe this has finally happened.  I had all but given up on the possibility of a real diagnosis, of real answers.  I came to accept my life in the last few weeks.  I began writing my book again, determined not to let my illness, my lack of evidence, my irritation at doctors, keep me from telling my important story to others...hopefully to inspire them to never give up on themselves, as my family did not give up on me.

Then, after almost a week had past from my last round of blood work to test me for antibodies linked to autoimmune diseases, my Mom came back from HER appointment with OUR rheumatologist with tears in her eyes.  First I asked about her knee, convinced he told her some news about that she did not want to hear.  It was nothing about her...  She then told me that my blood work came back.  I automatically thought that she was upset because all my tests we negative once again.  I was wrong.  She said "you have lupus". 

I was shocked beyond belief and instantly flooded with an incredible amount of relief.  Not exactly the emotion most people feel when receiving such a diagnosis, but I have been misdiagnosed and basically called anxious and a little crazy for the past 10 years...so this was proof beyond a shadow of a doubt...in black and white.  The numbers and pattern were there.  It is definitely Systemic Lupus. 

It all makes sense.  Every symptom, every treatment that worked, and every treatment that didn't...it all makes sense.  The puzzle pieces have finally fit together and it wasn't nearly as complicated as the doctors once thought.  Now it is my chance to give what I have always wanted...HOPE to those who are out there still going through this nightmare of getting diagnosed!

Frustration...

I do not understand why some men just don't get it.  They seem completely oblivious to what women are feeling, thinking, needing, wanting.  It really is driving me up a wall.  This doesn't even relate directly to me.  My Mom is getting the brunt of it, and I am seeing the result, first hand.  She gets upset by his "ignoring her" and I try to smooth things over by quietly telling him what is going on.  She usually knows that I clued him in, making her more annoyed about why he couldn't figure things out on his own...but she should realize by now, 30 some odd years later, that's not going to happen.  He needs guidance...he needs to be TOLD what she needs and wants...Sigh...I really hope it's not like this with ALL men!!  Is it?!?

Remembering

Today is not a post about me.  Today is a post about remembering the life of my beloved cousin Daniel Eric Pemsler...Danny.  He would have been 28 years old today, almost 2 years younger then me, but in so many ways, a better human being.  He was funny and smart and so incredibly loved by everyone he met, as evidenced by his memorial service where it was standing room only.  His friends were a diverse crowd because he did not hold prejudice.  He was simply nice to everyone, it seems.  I am sad to say that I did not know him better. 

When we were children, we were inseparable during family gatherings. As we got older, though, we seemed to have less in common.  He was more of the "jock" and I was more of the "nerd" (I am not ashamed to say now).  I am ashamed to say, that I did not spend more time trying to break through the wall of shyness we built up and talk to him.  He was so quiet, except with my grandfather.  He would speak to him and best of all, would listen.  He would not say anything when my grandfather would tell the same stories to him each time they would see each other (about how football players should hire sumo-wrestlers), he would just nod his head in agreement.  These visits would make my grandfather's day. 

We were all thrilled when Danny graduated college and found a job that he liked and a girlfriend that he seemed to love.  He was even planning on bringing her down for a visit to meet the whole family...something he had never done before.  Then we got the dreaded phone call from my Uncle...a call I do not wish to relive, so I won't.

What I do wish to talk about are the dreams...Danny sometimes comes to me in my dreams, telling me that things will be alright, or that he is ok.  He is always reassuring.  During the dreams I am always happy to see him!  He seems so incredibly real, so very alive!  That is how I choose to remember him.

Eating Woes

One would think that eating wouldn't bring such misery.  Eating should be pleasure.  For me, more often then not, eating equates to planning and depriving myself of the foods I truly love.  I have had to modify my eating habits more times then I count due to my ever changing illness.  Most recently I have had to eliminate all dairy from my life, including yogurt, which I was able to eat up until my last drop on prednisone.  I do not understand my system at all.  My diet has become increasingly limited.  The only thing that remains constant is my palat.  I love sweets...I always have, and have a feeling I always will.  I am not really a lover of salty or spicy foods.  I do enjoy the occasional kalamata olive, but that is really about it...I do not miss too many other high salt foods most other times....until today.  I just ate lunch.  I had a turkey sandwhich (about 2 ounces of low sodium turkey with 1 slice of challah and some homemade cranberry sauce *only because we were out of hummus* and then I did the REALLY odd thing and had a 100 calorie pack of Cape Cod potato chips). Now, honestly, I feel gross.  Not because I ate too much.  Not because I had too many calories or fat, obviously...but because I had too much SALT!  My pressure is fine...I checked it.  It is only 100/70, which is low on a "normal" person.  My pulse is normal too...90.  The salt did nothing to me, but make me feel as if I over indulged.  I don't even know why I craved such a thing.  I don't normally even want chips.  Today, I wanted them...I mean, I REALLY wanted them...and now, I feel guilty for eating them...ugh!

Changing Course

Last night, after thinking about what I had read so far in the book, "Eat, Pray, Love" by Elizabeth Gilbert, I decided to take stock in my life.  I am still searching for contentment... still searching for something that will give me pleasure. I am almost thirty years old and I keep coming back to that thought...The thought that I have only been in survival mode for the past five years haunts me.  Well, I am officially changing course!  I hereby give myself permission to move in a different direction, with or without a diagnosis, with or without a set treatment plan and even though I will get sick from time to time,  I know I will prevail.  I will make something of my life.  No more hoping it will happen...KNOWING it will!  I will finally start my life.

Amazed

I had originally heard about this book from my therapist and then from aunt, who both recommend books to me all the time.  They both know my taste in books and share from the heart.  My aunt and I have very similar taste in books pretty frequently...particuraly with books of the spiritual sort.  Then my therapist suggested it, and I thought about it, but just wasn't in the right frame of mind.  This must have been about a year or so ago.  I know that at the time I was going through the worst of illness and needing more of an escape from reality then deep and meaningful thoughts about how to set my soul free through traveling the world (which I would LOVE to do). 

Now that the movie is about to come out, and I had just finished my latest books on my kindle, which were trashy romance novels (fun fluff, but mind mush), I was ready to read something of substance.  I decided to download the free sample to see if I would like it before I bought the whole book (one of the best things about kindle).  My sister was down for a few days and I told her about the book and she said that she could not get through it, it was too dry for her.  One of my girlfriends said the same thing.  I became a bit skeptical about whether or not I would enjoy it...but my taste in books does vary quite a bit from my sister and that particular friend, so I decided to go ahead with the free trial, I mean, I had nothing to lose there.

Boy am I glad that I did!  I absolutely love this book!  I can't imagine why anyone would think this book is dry or dull.  The way the author depicts her journey through her soul is both enlightened and yet not overbearing.  She does not try to shove anything down the reader's throat, she is mearly sharing her experiences with humor and humility.  She was not perfect...far from it, and she acknowledges that fully.  The way that she was able to pick up her life that was in complete and utter ruins and put it back together is awe inspiring.  I HOPE HOPE HOPE that when I am well enough I have the courage and strength of conviction to do just that!!!

All Me...

This post I could see ruffling a few feathers.  I was thinking about it today as  I was saw all posts on facebook that I see referring to how G-d or Jesus gets my friends through rough times, or through the day, or even through a simple plane ride.  I do not agree with my friends on this...I never agreed with  the song "Jesus Take the Wheel"...I am more of the thinking that people should make their own destiny...take control of their lives...why leave your life up to someone/something beyond you?  Maybe that makes me a control freak, goodness knows I have been called that before!  But I think that has been what gets me through this illness...I don't believe it is G-d or some higher power getting me through my days...it is all me and my family when I can't manage...it hasn't been easy, and maybe it would be easier if I put my faith in something bigger then myself and just threw my hands up and let that being take over, letting all that happened next not be my fault "it's all G-d's plan"...that is not my style...what happens is ALL ME...my life and my health and my happiness are my responsibility and I think that makes a stronger and happier person for it, because I can own all the good and bad that happens...I HOPE HOPE HOPE my choices will continue to make me stronger and healthier and happier as I enter my 30's...

Not Autonomic Dysfunction??

Now my doctors are questioning my diagnosing AGAIN!!  I can't even tell you how disappointed I was to hear this yesterday!  I don't know what to think anymore.  My doctor said he set up a conference with a group of doctors (that was to meet last night) to discuss my case and assign an "internist" to oversee my case. This new doctor will be starting at the very beginning of my history.  The doctor yesterday said that he will not let anyone give up on me...I HOPE HOPE HOPE he is not one of the many that said that before things got too confusing and gave up anyway...I know he believes me...I know he thinks they can "read between the lines" (his words)...I HOPE HOPE HOPE I can have his faith in this new doctor (whomever he/she turns out to be)...