Monday, September 15, 2014

It's been a while...

How am I feeling?

Happy.  And that is the answer you will hear as we pass by and I don't have 30 minutes to go into detail, or when my children are around and I don't open up with details.  The details scare them.  But that doesn't mean I'm physically feeling great, even though that is what I will say.  Confusing, aren't I? My poor husband has to live with it.  Speaking of my husband, can I just tell you how amazing he is?  100% by my side.  My best friend.  My largest support system.  This guy deserves a medal.  And, he's hot!!

Here we are at UCSD for my gastroenterology appointment on Thursday.  My body is slowly breaking down.

I'm going to back up a few months and fill you in on some recent appointments and tests.

I saw my neurologist in July and he discovered that I have left sided weakness.  (All over weakness but more so on the left)  I had an abnormal neurological exam which led to him ordering an MRI.  He wanted a brain and full spine MRI which would be around 1.5 hours.  Since that was 1 hour and 29 minutes longer than I would be comfortable being trapped in a confined space, I asked for drugs.  Thankfully, those things worked great!  The 1.5 hours turned into 3 hours in the MRI machine.  There were several findings but I haven't spoken to my doctor yet so I will share them later.  (unless you understand medical jargon, you can ask, but I don't have a clue as to what it all means)  Some of the findings were a cause for concern and I will be getting a CT scan and it was suggested that I see a surgeon.

Last week, I saw the GI doctor and discussed the recent tests I had.  No surprise that I didn't do so well on them.  The muscles it takes to swallow my food, enter my stomach, leave my stomach and go through my GI tract, don't work like they should.  Some days they are ok but most days they are too weak to even get water down which then leads to dehydration.  The weakness throughout my gastrointestinal tract and all the way down prevent my system to work on its' own.  I also tested positive for a bacterial overgrowth in my intestines and was put on antibiotics which then caused peripheral neuropathy.  Thankfully, the neuropathy has gone away.  I canceled the other test when I found out more about it.  It is called an esophageal manometery and they jab a probe down your throat to measure muscle strength.  They tell you that you will feel like you are choking and you will gag during it.  Seriously?  Why would I put myself through this?  Can we just assume it's weak?  Well, the doctor said it was very important that I do that test so through tears (real tears) I agreed.  I rarely cry so I was surprised that my emotions decided to show up right then but I guess that's how much I don't want this test.  I also don't want the feeding tube they are recommending.  The doctor was very compassionate and asked if I was under stress.  "No," I laughed.  Because I really don't think I have any stress.  He was surprised to see me cry and said that I seemed like such a happy person.  I am.  But I'm also very sick and sometimes that makes me cry.  It's ok.

I have a chronic illness that doesn't have a cure and will continue to progress no matter what I do or don't do.  Along with it being a chronic illness, it is also an invisible illness.  You can't see it by looking at me.  Just because my outside doesn't match my inside doesn't mean that I'm not still sick.  Just because I have an optimistic outlook and a smile doesn't mean I'm cured.  It turns out that it is going to take more than a positive attitude to cure this one. (but I'm not giving up that attitude)

A frequent conversation that I have with others goes like this:

How are you?
I'm happy, how are you?
You look good and you are out so it's good to know you are better.
Thanks.  I'm actually not better but it's nice to be out.
You look fine.  You don't look sick at all.

Inside I cringe.  What does that mean??  Does that mean that the inside of my body isn't actually falling apart?  Does that mean that when I put make up on, get dressed, go out, smile, laugh, enjoy life, that I'm not sick anymore?  Does it go away because I look good?  What does sick look like?  Should I mope?  Should I wear sweats?  Not do my hair and make up?  Should I stop smiling?  No.  I don't think that's the answer.  But seriously, what does "sick" look like?

So, how am I feeling?
Some days I am feeling great.
Some days I am not feeling so great.
Some days I can eat like a normal person.
Some days I can't.
Some days I can't even drink water.
Some days I can't drive or leave the house.
Some days I can join my family on fun adventures.
My health is unpredictable.  My life is unpredictable.

Some days we are surrounded by so much love and support.
Some days I feel so alone.

Some days I feel like I am cheating my kids out of a stress free, healthy, over active lifestyle.
But then I realize that is not the case at all.  By homeschooling them I am giving them the gift of time.  Spending all day, every single day with them, teaching them, playing with them and loving them is the best life I can give to them.

This is the life we were given and this is the life we will love.  I can't feel sorry for myself when I have so much to be grateful for.  When I have so much love in my life, it's hard to feel anything else.


  1. I wish you'd post more love. I like to hear how you are doing. I'm glad you get to stay home and home school your children. I stay home too, but I could not home school. I just don't think I have the patience lol. Only my oldest is school age right now anyways. You know I know exactly what you mean by looking fine on the outside but hurting on the inside. My upper muscle knot pain is still hanging around. I have my bad weeks where some days I cry too because it hurts and I get tired of dealing with it for 2 years now. Then I have good weeks where the tension is there, but at lease it's not hurting. It's hard dealing with pain because life still goes on and it take a lot sometimes to keep my emotions in check when say the toddlers are being bad and I'm already frustrated because I'm hurting. Still I have hope that it's going to get better. I haven't done a lot to help my cause but I'm sure once they get bigger and I stop straining myself from carrying them so much it will help, that and when I can start getting massages more regularly. I also want to start some cortisone shots once I'm done nursing. We'll see. Keep us posted. I'm praying for you.

  2. You are so beautiful and such an inspiration to all of us! I love you!


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