A Future Unknown

          I can't deny that I'm scared. I'm the kind of person who needs to know what the future holds. What to expect so I can prepare for it. My future still stands on a balance beam. My future is unknown. The unknown scares the utter baloogas out of me. We know I have fibromyalgia. There's no cure, just a lifetime of constant pain, and flare ups that have me stuck in bed. But there's more.

          Yesterday I wen't to the doctor. I went expecting a med change. There's a back story to this:

          I went to the doctor a few weeks ago after I had strep throat. I didn't seem like I was getting any better. When I went he discovered that I had a sinus infection as well. I was given Zyrtec for my allergies and Flonase for my nasal symptoms. I had explained to him that when I was on Prednisone (oral steriod) for three days that I had no pain (with the exception of my  throat). He said that if the Flonase helped my pain to go back and see him and we can add an oral steriod to my meds.

          Those that know me really well know that I hate taking meds. Even your basic tylenol or vitamin. I know that I didn't like taking them before Liam came along, but after his birth and all the meds he's had to be on that it intensified my dislike for meds. I've been hating to have to take the meds for my fibromyalgia. The last thing I wanted to do was add another med into the mix. But I'm desperate for relief. 

          So I went into my appointment just expecting him to add an oral steroid to my med mix. What really happened was far from expected. I told him about my hands. How they've been hurting really bad and how I'm loosing strength and drop things all the time. I explained how once again my feet are getting worse. I let him know that my memory is getting worse. I can be talking and all of a sudden I'll stop. I'll either forget what I was saying or I'll not even remember I was talking. It's very frustrating for my family. I can walk into a room and forget what I was doing or going to do. I forget how I got from point a to point b. 

          My doctor asked about headaches. I was a bit annoyed because we had gone over this in the past. I have chronic constant headaches. They get worse to a migraine, then lighten up to livable but I'm never headache free. We talked about my eye sight and how it's getting blurrier. They did an eye exam and I have 20/30 vision. Not bad at all. I just have to concentrate really hard to make out the letters. I explained how my sensitivity to light has gotten worse. How the light hurts my eyes and causes pain as well as rashes and makes me sick to my stomach. I explained that the rashes I was getting just on my face are now getting worse. Not only to I break out in one more often (several times a day) but that its spreading from just my face/ears, to now my chest as well. 

          After talking he decided it was best to go consult another doctor. He felt we were dealing with more than one medical issue. After consulting the other doctor he came back in the room. He ordered a bunch of blood work and test as well as referals to nurology and rhuematology. He ordered blood work to test vit D, B1, B12, kidney function, infection, cancer and again Lupus. The Lupus test is apparently different from the last two they ran. He ordered an MRI of my neck as well as a CT of my brain. He wants rhuematology to see me because he really feels like I have Lupus. He wants nurology to see me because he feels that I have something wrong in my brain.

          What it all boils down to is that both my doctor and the one he consulted feels like I have two more medical issues besides fibromyalgia. They feel I have Lupus as well as a brain tumor. He explained that some symptoms are screaming Lupus (rash, whole body swelling and pain and sensitivity to light and more) and other scream brain tumor (numbness, tingling, loss of strength, constant headaches that even the "miracle" migraine meds don't help, eye sight, memory). He said that it's really the only things that make sense. 

          After dropping this atomic bomb on me, he said that adding a new med to the mix would not be smart. He feels we need to at least get the blood work back before doing anything. I was devastated. Not only does Lupus keep coming up but now a brain tumor! And cancer?? So to deny being scared would be a waste of time because I am very much scared. I have a family to think about. Two small children that need me to be healthy and at  my best to love them and care for them. I can't be down. I just can't. It breaks my heart to even think about this.

          I keep getting asked what I want for Christmas. There are only a few things on my list and it's nothing money can buy:

          *For Liam to be healthy, strong and happy.

          *For Lanie to stay healthy, stay happy and grow up to be a strong, smart, young woman.

          *For Justin to know how much I love him, and for his to be rid of his anxiety issues that are holding him back from being the best he can be.

          *For me to be healthy and pain free.

          Money can't buy happiness. Money can't buy back time lost with your loved ones. I can only sit here and wait, and pray that the best outcome possible happens. That they find out whats wrong with me and fix it. And pray that I have many many many more years with my family. I don't know if it's the increase of my ampitripaline the doc did or not but I feel calm and resolved. Whatever happens is going to happen no matter how hard I fight it. That's why I'm praying. God has given us miracle with Liam's health and I have faith he will do the same for me.

          If you could find it in your heart, please keep us in your prayers. 

-Aubin

When Life Throws You A Curve Ball

I want to say that life is crazy,

or is it insane,

or just insanely hard?

I'm not sure how to describe my life,

but that it's been filled with one test after another.

They say these trials and tribulations are supposed to make us stronger.

There's also a graphic I saw online that says,

"Don't you think I'm strong enough?"

Well,

No.

I guess not.

I have Fibromyalgia.

It's painful.

I hate being in constant pain,

but I found a way to work around it.

Well for the most part anyway.

That time between major flare-ups that is.

So what happens when I finally figure it out,

and learn to live with it?

God throws me another curve ball.

Another test.

Because a life time of test wasn't enough.

Because in his eyes I'm not strong enough.

Because he just loves me that much??

I went to my doctor yesterday.

My blood pressure is low.

Which is seriously weird considering the stress I'm under.

Helping plan and organize a school carnival is hard stressful work!

I can't tell if my weight is up or down,

because well,

my memory has been tampered with thanks to FM,

and I can't remember what I weight before.

(Liam is almost 28 lbs now if that's any consolation!)

(And it should be because that's amazing!)

(And I'm serious that I can't remember what I last weighed in at,

it's not that I don't want to share)

(although I am embarrassed by it, I know its part of FM)

Anyway....

I got my flu shot.

(yay me for wanting to protect myself and therefor Liam)

My blood work came back.

My kidneys are functioning fine.

My immune system looks good.

I was neg for rheumatoid arthritis.

Here's the kicker though.....

My blood work came back positive for the Lupus marker.

(Just let that sink in for a second, LUPUS)

Lupus?!?!

Seriously?!?!

I didn't even know what that was!

I mean besides your body attacking itself.

And that it was seriously serious.

(Yea I know I said it "seriously serious")

I stared at the doctor.

I mean full on stared at him like

"What the heck man?! You like messing with me right?"

But sadly no he wasn't messing with me.

And how do I know that?

Because he ordered more blood work.

A comprehensive ANA panel to test for Lupus.

So not only did I get crud-tastic news,

but I got stuck my needles twice yesterday,

and I have a fear of needles.

Liam got to watch mommy get 2 owies.

I bet he thought that was payback for all the times I watched him get shots and IV's lol.

My doctor said that because I have several Lupus symptoms,

and that the marker was positive,

that it was important to get the comprehensive panel.

We had to be sure.

After telling me this,

he asked me a ton of questions.

How do you do in the sun?

I avoid going out in it as much as possible.

Why?

Well doc...

It makes me sick to my stomach.

My face feels like its burning and I get this weird sunburn on my face.

And it hurts my eye.

There aren't dark enough glasses in existence to help the light sensitivity.

He looks up at me with this,

"Oh cr@p, why didn't I know this" look.

My bad.

I just figured sitting you down with this huge list of symptoms would make you think I was a hypochondriac and then you wouldn't take me seriously or treat me.

I just figured that because I've dealt with it since I was a teen that it was just something that wasn't a big deal.

Whoops.

So after a laundry list of questions,

he said I had several Lupus symptoms.

Then that's when he got pushy about the flu shot.

He looked at me with wide eyes like he was trying to brainwash me,

and said "why don't we get you a flu shot today"

Me "Um" I look down at Liam and start to answer only he talks again.

Doc "What do you think? I think you should get it"

Me "Yea ok"

How could I deny it when I'm looking down at Liam?

How could I not vaccinate myself when I want him to stay healthy?

Flu shot it was.

For Liam.

But in my arm,

because yea I just "LOVE" getting stuck with needles.

So now Liam and I are vaccinated.

He refilled my meds and added a new one for migraines.

Because having a migraine most days out of the week sucks.

Honestly after the news that I could possibly have Lupus,

I was in a daze.

It's like my brain temporarily froze,

or shut down.

It was my brains equivalent of jaw dropping to the ground.

There were no other emotion at that moment but pure shock.

I thought Lupus has been ruled out last year.

Last December I believe the initial test had come back neg for Lupus markers.

How can it be positive now?

He said that it's probably because there's inflammation in my body associated with the pain.

Uh,

last time they ran the test I was so bad,

I could hardly even walk.

I'm positive there was inflammation there!

And why Lupus of all things?

I don't think I've ever wanted Fibromyalgia more in my life!

The first chance I got last night,

I did a little research of Lupus.

There this one blog of a girl who has Lupus.

Shes been doing Chemotherapy for 2 years to fight her Lupus!

Seriously!

I read there is different types of Lupus as well.

Any way you look at it,

it's not good.

Fibromyalgia is basically a God sent compared to Lupus.

I didn't ask God 'why me?'

Nope.

Instead I prayed that he would grant me the strength and courage to get through this.

If it is Lupus that is.

I wanted to cry.

I honestly almost did while talking to my Grams.

Today I feel resigned.

All I can do it wait until the test result come back.

All I can do is pray.

There was this graphic on FB today:

There was no question about it.

If I could sit on that bench and talk to one person from the past,

someone no longer on earth,

I would talk to my dad.

I wouldn't ask him what went wrong in our past.

I wouldn't ask why he didn't end up with me,

or talk about how different life would have been,

No.

I'd ask what his greatest advice was from what he learned about life.

I'd ask his advice on how to just deal with life.

I'd tell him I love him,

and that I missed him,

that even though I wish I had grown up with him,

that I understood it was out of his control.

Most importantly,

I'd hug him.

So what has been your greatest advice?

What has life taught you?

I've learned life is hard.

If it's easy your doing it wrong.

I've learned you have to work hard and struggle to get anywhere.

And when you get there,

you struggle more.

But it's not impossible to find happiness.

You just have to work to keep it.

You have to be able to see the good in everything.

If you honestly can't see any good in a situation,

you have to be able to get yourself out of it.

That's life in a nut shell.

Pain Pain Go Away

And unlike the nursery rhyme I Don't want it to come back another day.

I have no gotten better,

infact worse.

My whole body has been in pain since Saturday morning.

Friday couldn't come faster.

I am really anxious for those test results.

And now that a friend on FB has shared an article with me,

I am even more anxious.

This article could have potentially saved my life.

The article is about a woman who had Aspartame poisoning,

only they didn't know that.

Her doctors thought she had MS.

Here's part of the article and know that I have every symptom listed:

Systemic lupus has become almost as rampant as multiple sclerosis, especially with Diet Coke and Diet Pepsi drinkers. The victim usually does not know that the Aspartame is the culprit. He or she continues it’s use; irritating the lupus to such a degree that it may become a life-threatening condition. We have seen patients with systemic lupus become asymptotic, once taken off diet sodas.

In cases of those diagnosed with Multiple Sclerosis, most of the symptoms disappear. We’ve seen many cases where vision loss returned and hearing loss improved markedly.

This also applies to cases of tinnitus and fibromyalgia. During a lecture, I said, ‘If you are using ASPARTAME (Nutra Sweet, Equal, Spoonful, etc) and you suffer from fibromyalgia symptoms, spasms, shooting, pains, numbness in your legs,
Cramps,
Vertigo,
Dizziness,
Headaches,
Tinnitus,
Joint pain,
Unexplainable depression, anxiety attacks, slurred speech, blurred vision, or memory loss you probably have ASPARTAME poisoning!

You can bet Ill be asking the doctor friday about this.

As well as letting him know that,

up until today,

I drank DIET PEPSI

like it was water.

I needed my diet pepsi like an alcoholic needs his drink.

Up until today that is.

I refuse to drink another diet soda.

It's just not worth it.

Within 32 hours this woman who was in a wheelchair,

was able to walk again.

All because she stopped drinking diet soda.

She also reported that her muscle spasms went away.

No she wasn't 100%,

but it takes time.

She was also off all her medication

except one for the poisoning.

I know everything is in God's hands,

but I do hope that I will be able to report that my symptoms have started to go away.

The last diet soda I drank was last night,

so I'm almost 24 hours to her 32 hour mark of feeling better.

Please say a pray ;)

You can read the article for yourself at:

http://rhondagessner.wordpress.com/2013/09/02/a-killer-in-your-fridge-sweet-poison-a-must-read/