My Anniversary Gift

My husband, Hal, has been my number one fan of reading my blogs.  He tells me that I'm a good writer and when you write with your heart its beautiful.  I figured I would take a mini break from writing about Lupus and write about my hubby.

My dear mother is your typical mother.  She wants you to be married, but I was only 21.  She placed an ad in the local paper.  At that time, the Internet wasn't invented yet for public use.  Image that?  I received 18 responses from this advertisement and went out with half.  Hal was the last one.  I've been with him ever since. 

I love him with all my heart and all my soul.  He is my best friend, and just like he told me, I'm a better person for knowing him.  Thank you for letting me lean on you for support when its needed and thank you for putting up with my stubborn attitude.  Thank you for making me laugh even when I think its impossible to crack a smile.

For my gift to Hal, I'm giving him:    a gift certificate to a hot air balloon ride but in the autumn.  I will post the pictures as soon as they are available.  They should be awesome!

I love you Hal.  Happy 20th Anniversary and many many more to come!!

Snore away Lupus...

"The amount of sleep required by the average person is five minutes more."
-Wilson Mizener

I had a sleep study done about a year ago, and they found out I wake up about 20 times a day. I also snored something fierce which was the reason I was waking up. I'm grateful I don't have sleep apnea.  Its not very romantic to wear a face mask to bed every night.  It was recommended from my ENT that I should get either the Pillar procedure or the injection snoreplasty.  I decided to do the series of shots in the back of the soft palate of the mouth.  The only reason I went with this type is it was cheaper.  It was only $750.00 and of course, this was an elective so its was not covered under insurance.

I often wonder if this was the start of something evil.  I had put a harmful chemical into my body, 6 horrible injections all together.  My ENT claimed this was a safe procedure.  Is is safe for all people?  These were very painful shots, don't believe what you read on these websites that its just a sore throat.  This caused me to have my first experience with Prednisone.  My uvula (the little punching bag in the back of your throat) had become so swollen, I started to choke when I would lie down. Nice, right?

I know logically and there is no scientific back up for my theory but I have to wonder if this "sparked" the Lupus in my system.   Am I crazy to think this idea? I've had pains in my joints for over year now, especially my knees, and hips.  The prednisone seemed to clear up the inflammation in my system and now that I'm on a low dosage of steriods, the knee pain is starting again. 

Oh...and by the way...I still snore but that seems like such a small problem these days.


Pillar Procedure: 
Snoreplasty

http://www.rhymeswithorange.com/

My letter to Lupus

"People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can't find them, make them”  George Bernard Shaw


I was talking to my friend, Caren last night.  Caren and I went to college together and she was my bridesmaid 20 years ago.  I was married when I was 15 years old..just kidding.  This made me remember how I used to write in my journals as a kid.  It’s how my mother knew what I was up to and I ended up in therapy.  I had a tendency to write some crazy stuff.  Here’s a word for parents:  Don’t read your kid’s journals.  It’s an invasion of privacy and trust. Ironically, I’m still writing journals but do it publicly for the world to read.  Anyway, the therapist used to have me write letters to the people who I couldn’t confront personally.  I thought I would give it a try as if Lupus was a person.  Below is my letter to Lupus: 

Dear Mr. Systemic Lupus Erythematosus,

On February 8, 2011, you showed up at my door and made yourself at home.  You are an unwanted guest and the word “guest” is being polite.  You have made my life miserable and the people around me have been affected by your actions. 

You have made me strong. Strong enough to kick you out of my life. The only advantage of knowing you is I have made a few new friends and strengthened my old friendships and for this, I will be forever grateful.  However, you have caused me great pain, and I want my old life back.  You have caused me to take too many costly drugs, and so much of my time wasted in waiting rooms for doctors to see me for only 5 minutes.  The only doctors I went to before I met you were the dentist and my yearly "perfect" physical from my family doctor.

Mr. Erythematosus you are no longer welcome.  Go back to where you came from.  Don’t bother me, any of my family, friends, or my extended family.   

Sincerely,

Debra J. Edelson

Some Good News

"You can become blind by seeing each day as a similar one. Each day is a different one, each day brings a miracle of its own. It's just a matter of paying attention to this miracle.”

Paulo Coelho

Borrowed from another blog, Thank you for the laugh.  Only people who have taken large quantities of this drug will understand.

Yesterday and today was/is a good day.  Yesterday, I was told by the doctors I was free of inflammation from Lupus and my optic nerve inflammation is gone.  Also this morning, I was told I'm doing a great job at my main job which is probably the first time I've heard that in 3 years.  I normally work in a negative environment.  The best news of the day, was my doctor called to tell me I can reduce the Prednisone by half.  I hate prednisone but I can't seem to be without it right now.  It got rid of the inflammation which stopped me from losing my eyesight completely, however, the side effects are not pleasant.  I battle with weight gain every day, I’ve been losing my hair more than normal (which no one would notice since my hair is very thick), the sleepless nights and exhausted days.  The best side effect is the mood changes.  I can get angry at any moment, and cry at the dumbest things.  I found myself crying over a car commercial. It wasn't even a sad commercial but it seemed to trigger a prednisone moment.  I hate that drug!

I called today to make an appointment for a physical and to get another referral.  The office manager said she has me listed in her prayer book.  She has been praying for me ever since this Lupus crap started. She wanted to know how I was doing and what is next in treatment. This was an unselfish act of kindness on her part.  Truly an amazing person!  I think when I see the doctor in 2 weeks, I will bring her flowers..just because!

I wanted to thank several people (without last names).  Thank you to my wonderful husband who loves me with all his heart.  Thank you to my mother who called me at least 2xs a day to make sure I was okay.  Granted, she made me crazy at times, but I know she loves me.

 A very special thank you to my dear friends, Dina, all my Lisa's who checked on me, and to Vicki and Vicky who made me smile.  To Ellen and Rich who helped me. Thank you to my childhood friend Helayne for your special help and my bridesmaid, Caren.  I'm glad we reunited. 

Also, I want to give Misty, a virtual hug, who blogs and writes a page on Facebook.  She may not realize how she has helped me.  I didn't feel alone but a little lost in the world of Lupus, and angry.   It felt good to have something in common with other people who understood Misty may be half my age, but I learned a lot of knowledge from this wonderful person.



Life without Botox...

So, I'm looking at this person,  Elphaba Thropp (name changed to protect me) wondering why her eyebrows are in the middle of her forehead.  It then occurred to me that she must of had Botox injections over the weekend.  I see at least 2 reasons not to get Botox  I'm sure I'll think of more reasons at 2 AM when I'm awake, AGAIN.

This will happen to you if you stay in the sun

One of the issues is at a certain age, it just doesn't look right.  Your eyebrows and face are supposed to be in correct spot. Mrs. Elphaba Thropp gave up her facial expressions except for the look of surprise.  I guess I have a lot more respect for myself.  I'm proud of myself and of my age.  I might be "older" but I'm just a big kid. Ask my friends or my husband how I act on a daily basis.  I still play practical jokes on unsuspecting people and do silly things to make myself and others laugh.  If I could wear a red clown nose and big red shoes to work for a laugh, I probably would do it.  Unfortunately, I know a few people who have coulophobia (fear of clowns...I had to look it up).  I know someone who has Metamfiezomaiophobia (fear of mimes).  That's a great word except it won't work in Scrabble.

I'm sure I'm not the only one who doesn't understand why we inject ourselves with poison?  If you are trying to be healthy, you just wouldn't do it, would you?  As someone with an autoimmune disease, I wouldn't even attempt to add another harmful chemical in my body.  I think by now, I have enough chemicals in me to run one of those Smart Cars for a few miles at least.

They don't care!

My lovely health insurance.  I need to take Neorontin for the pain, which my doctor has increased the medication from 100 MG to 600 MG within 2 weeks (6 pills a day).  My health insurance is telling my pharmacy and the doctor this is not necessary and will only pay for 300 MG.  Managed healthcare..?  Who is looking out for the patient?  Apparently, the insurance company that I pay a premium for every week out of my paycheck doesn't care! #$%^  %*&!!!!  It's the evil empire!

"If you think nobody cares if you're alive, try missing a couple of car payments." - Earl Wilson  I think this also applies to health care.  They don't care!!!

Learning to be Thankful

I'm learning to be thankful again.  Its not easy to re-learn this skill.  I've been pissed off at the world and feeling a bit selfish.  So, I'm writing on what I'm thankful and blessed for.  It's a work in progress.  I will have more later.

I'm truly blessed to have Hal in my life.  I know I can tell him not to worry, but he will.  I know he trys to understand but its not easy.  I wake up every morning at 2 AM, but he doesn't seem to complain.  Stupid drugs.  I'm looking forward to a life without these drugs and doctors..it has to be soon. 

I'm thankful for my true friends and my family,

I'm thankful for the promise I made to myself last week that I will not make Lupus define me.  It can be difficult since the pain reminds me on a daily basis.  If someone now asks me how I'm doing, I'm okay, good or great.  It may not be the truth, but it makes my life and their life easier.

I'm lucky to have a doctor who calls me on a regular basis just to see how I'm doing.  She can't help me with my Lupus, but she listens to the problems I'm having.  She also gathers all the information from all my doctors, just in case its needed at some point.

I'm happy and thankful I was able to run a mile last week.  It made me feel awesome and normal.  I paid the price later, but it didn't matter.  I did it!

Gossip.

Why does "John Doe" (name protected to protect me), insist on advertising that I have Lupus.  I've stopped talking about it so why can't they stop?

Okay Lupus..you can go away now...

What seems nasty, painful, evil can become a source of beauty, joy, and strength, if faced with an open mind. (Henry Miller)

I have a new medication to add to my list.  I'm up to 14 pills a day and will be up to 18 in 2 weeks.   I seem to have a problem with my nerve endings all over my body.  Its like someone taking a needle, very quickly, and jabbing me.  The pain only lasts for a few seconds, but it seems this is happening more and more frequently.  I haven't seen the doctor yet but spoke to him over the phone.  He thinks it may be nerve damage.

I am trying to stay positive, and thinking I can get through this challenge too..It's not easy, I will not lie to myself.  One day at a time.  If that doesn't work, 1 hour at a time.

Tomorrow, I'm walking in the Susan G. Komen Race for the cure.  I had originally signed up to run it, but walking is okay too.  I'm looking forward to it.  It's supposed to be a beautiful sunny day.

The Survivors!  Awesome and Inspiring!

Compassion

My husband told me when this all started, it was for a reason.  I couldn't imagine how it was possible.  I didn't understand why it happened to me.  I think I'm a good person with a good heart.  I try to be polite, and considerate of others.  I've never been sick besides a cold or the occasional...oh, maybe I shouldn't of eaten that...

Now that I've had time to think and digest all of this, I'm starting to see something change in me.  I've truly become more compassionate.  When someone tells me their problems, I listen.  I truly listen and it touches my heart. Yes, I listened before, but it's not the same.  I understand.  

I may have lost part of my vision, but I gained a lot more insight.

Thank you to my wonderful husband who told me it was for a reason.  I love you.  Looking forward to the next 20+ years with you.  Happy early Anniversary.

Temper Tantrum.. I wants...

Sorry, I'm in a very cranky mood..It won't last long but I had to write how I'm feeling at this moment.

I want one good night of sleep. 
I want my vision back.
I want to stop feeling tired.
I want to stop taking the medications.
I want to stop going to the doctors.
I want to stop the doctors from sugar coating.
I want to stop shaking.
I want my life back from 3 months ago.