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.

Thanks....

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.

adjusting

I seldomly find myself alone.  So when I was alone in my car making the 1.5 mile drive to my doctors office for a bladder infection, I blared the radio and sang along to one of my "river songs".  That's when it hit me.  The tears flowed effortlessly down my face as I realized how much I missed my life.  I want it back and I want it back now.  I want boat rides and I want to be able to handle heat above 70.  I want long walks and dinners out with friends.  I want to laugh without causing pain.  I want unplanned adventures and spur of the moment trips.  I want to dance... no that's not true.  I've never liked to dance.  I want to play catch with my kids, I want to swim with them and chase them around.  I want to smile because I feel good, not because I'm hiding pain.  I have been so busy surviving each day, being grateful for the life that I do have that I didn't even realize what I have lost.  I couldn't stop crying as I was thinking of the great memories we made on our summer vacations.  Vacations... a word of the past.  A word that makes my body cringe thinking  about it because I'm not sure if I can muster up enough energy to take one.  Vacation, a word that my family craves.  Dream vacations are what we discuss at the breakfast table.  Everyone saying where they want to go and what they want to do.  Once breakfast is over, we sigh and start our day, wishing and hoping for one day to take these vacations.

We are adjusting.  Adjusting to the new changes we have right now while waiting for the old life to return.  I have been on TPN now for 6 weeks.  That's 4 weeks longer than I expected.  (Apparently I was the only one who thought I would only be on it for 2 weeks)  I have gained all my weight back plus some which I'm not sure is supposed to happen.  I am not experiencing the pain, headaches and everything else that came with not eating or drinking enough.  The TPN has saved my life, even though having the PICC line is scary with all the possible complications such as infection, stroke, heart attack, blood clot which I've already had in one line.  I can't lift more than 10 pounds with my right arm.  I can't get my right arm wet which makes showering a little tricky.  Even through all the negatives the PICC line comes with, the positives certainly outweigh them.  I am alive and learning to deal with this new challenge.   I see the GI specialist on Friday.  It's the first appointment with him so I know I won't receive answers but I'm hoping we can move along quickly with whatever it is he will want to do.  You know how there are 5 stages of grieving?  I've decided to jump between denial and acceptance.  Mostly staying in denial.  I've noticed this keeps me feeling so much more hopeful.  I don't need to know the reality.  I just need to know that all will be ok.  I trust that our God can heal and so I will wait.  While I wait, I'm not going to stay on an emotional roller coaster because honestly, all that does is cause more stress and worry to those around me.  So, we adjust.

I often hear that God will only give us what we can handle.  With each trial he throws at us (it's not even a gentle toss) we respond with, "we can handle this," but I do think we've got to be getting close to all that we can handle.

Wyatt had a thorough 2 hour appointment with two wonderful neurologist's at Children's Hopsital on Monday.  Wyatt has been diagnosed with Tourette's, ADHD and migraines.  We have known for a few years about Wyatt's tics and have discussed it with his pediatrician.  When a child has tics for 1 year or less, they are just tics but if it lasts longer than a year it's Tourettes.  Wyatt started having tics when he was about 4 or 5 years old.  It started with throat clearing, then moved on to hard blinks of his eyes, followed by eye rolls and humming.  This is very typical behavior of someone with Tourretes.  Tourettes is a neurological disorder that usually peaks around the age of 9 and then declines after puberty.  In 20-30% of cases, the symptoms disappear entirely as the person reaches their 20's.  With Wyatt, he becomes much more severe whenever he is in any type of a social setting.  School, church, birthday parties, t-ball, gymnastics...  His anxiety levels were so high that he wouldn't want to go anywhere.  The neurologist said that the tics are not harmful and since there is no cure for them, the main goal will be to treat the anxiety.  The ADHD is fine because he is homeschooled so he is not required to sit still for long periods and he gets the attention that he needs.  He is doing great academically, but sitting in a classroom would be torture for him.  The headaches were a concern so we will try to track them better.  That being said... she thinks this is very possibly related to a mitochondrial disease.  We weren't expecting to hear that and it has been one of our biggest fears with our kids.  They are going to look more into what my recent genetic tests reveal so they can try and pinpoint my abnormalities so we don't have to put him through extensive testing.  I am really hoping it is just Tourettes.  Knowing more about what is going on with Wyatt makes things so much easier.  Understanding his behavior, why he does certain things and why he can't do certain things helps us adjust.  Educating myself with this new knowledge will arm me with answers when people ask questions, tease him, or become afraid of him.  I wasn't sure if I wanted to share any of this publicly but after thinking about it for a while, I decided that educating others is the best choice.  Wyatt knows that God made him perfect just as He has made each one of us perfect in our own ways.

The one constant we have had through all of this is your love and support.  I am overwhelmed by the outpouring of community support we have received.  We are so incredibly grateful for all the help, flowers, food, prayers and love you have given us.  Thank you!

Eating through a tube

What a week!  Well, more like 7 weeks.  If we are being specific, 4 years.

A few months ago I was diagnosed with gastroparesis (delayed gastric emptying).  At the time it was not severe or interfering with my quality of life.  Then came January 5th when I lost my appetite.  A lot of illnesses were flying around and I assumed I caught one.  However, I never got my appetite back again.  Each time I would try to eat I would experience a feeling that one more bite will make everything come right back out.  Liquids were harder because they hit my stomach so quickly and stayed in for so long.  Imagine eating your dinner and instead of digesting it, you kept it in there, right at the top and woke up in the morning still feeling last nights dinner.  I was too afraid of germs to make a doctors appointment so I waited longer than I should.  Finally, last Monday I called for a doctors appointment.  I was treated for dehydration and the doctor made a call to a gastroenterologist (GI) specialist.  The plan was to get some testing done and go from there.  Unfortunately, I only became more dehydrated landing me in the Emergency Room on Thursday night.  I arrived with a migraine and stayed for a while to get fluids and meds for my head.  We were told to see a doctor the next morning at our medical office.  My labs showed dehydration and malnutrition (obviously) and since I still wasn't able to eat or drink it was determined that I would be needing a PICC line.  A PICC line is an IV that goes in through my arm and up to the top of my heart.

Friday afternoon, I went into the hospital to have my PICC line inserted.  What should have been about 1 hour took 4.  After a failed attempt on my left arm they finally succeeded on my right arm.  I stayed 2 more hours for more hydration.

Saturday morning was my first visit with my home health nurse.  She came to teach me how to use the TPN (total parenteral nutrition) which at first is quite overwhelming.  Anthony wasn't home so I needed to learn it all to be able to do it myself.  After going through the lesson it was time to start the pump and get it in me.  As soon as it started I had an adverse reaction.  It felt like something was squeezing all the air out of my chest causing me to cough out my air and not inhale.  My face then felt like it was burning, turning bright red, followed by turning pale, sweating and then shivering.  The nurse reacted quickly turning it off and flushing my line.  At this point I had no idea what we were going to do if I couldn't tolerate TPN and I couldn't eat enough to sustain.  A few hours later the doctor had us try regular saline with added potassium and dextrose and unfortunately I had the same exact reaction.  The doctor sent us to the Emergency Room and advised that I be admitted into the hospital until we could get this all figured out.  I called Anthony home from work again and we took off.  As we were driving down there I felt uncomfortable in my chest.  Sitting in different positions would make it feel better so we assumed there must be a problem with the PICC line, most likely touching my heart.  The walk from the parking lot into the hospital was difficult.  I was out of breath and feeling fluttering in my chest.  I explained the situation to the admitting staff and suddenly became extremely light headed.  I felt myself start to fall backwards so I grabbed Anthony and then I went limp.  A security guard that was walking right past us caught me from behind with Anthony hanging onto my arm and before I knew it, I was in a wheel chair being swept back to triage where I had an EKG and then brought to a room.  I don't get scared that often about my illness but when this happened I was scared.  I usually like to joke around (shocking, I know) but I just laid there praying.  We saw the doctor and then I was sent for a chest x-ray to check the placement of my PICC line which turned out to be fine.  The doctor saw no reason for me to stay in the hospital and since he thought the placement was fine, we went home.  We certainly were not happy since I nearly passed out upon arrival and had such bad reactions earlier.  Going home without answers as to what was going on was quite unsettling.  I was a little nervous but actually felt better about going home because I am such a germaphobe and hospitals tend to be filled with nasty germs.

I had home health care nurses come each day and have successfully been able to do the TPN through my PICC line.  A friend who also has a mitochondrial disease came over and gave me an education but more, a sense of relaxation.  Knowing she is a phone call away for any help puts me at such ease.  I am so grateful for all the support that I have.  My family has really stepped up, dropping whatever they were doing at the time to help me with the kids or take me to the hospital.  It's a blessing to have this kind of love.

My newest accessory, a backpack filled with nutrition feeding my body and keeping me alive.  For now I will be hooked up to this 24/7.  I see a specialist on Thursday and hope to get more answers.  Until then, we are learning to adapt.  It's a hard change, one I wasn't expecting to happen so soon.  It's frustrating, scary and overall just a bummer to be going through.  It is what it is and we will embrace it. I know there is always going to be light even though there are dark moments and I know I have so much to be grateful for.  I am completely aware that I could have it much worse, so I count my blessings.