Monday, May 2, 2016

Right Now

Six weeks ago I had the surgery that placed a jejunostomy feeding tube (J-tube) into my jejunum, the second part of the small intestines.  The hope was that I could increase my nutritional intake via a tube that bi-passed my partially paralyzed stomach.  After 2 weeks of failed attempts, complications, more trips back to the hospital and surgeons office, and further weight loss, it was determined that I would need something more.

Two weeks ago I received that something more in the form of TPN (total parenteral nutrition) through a port that was surgically placed in my chest.  The hope again was to gain weight, strength, and health.

Trying to figure out how to get around with 2 bags, using the port with TPN and the J-tube with formula.

Right now....

Right now I am constantly reminded that I am unwell when I awake with a nauseating headache, swollen legs/feet, puffy face, and a bloated stomach.  Six weeks ago I had so much hope and excitement for what I truly believed was going to be a quick fix.  The past six weeks, however, have been a true test of my strength.  I've cried out in frustration while giving myself sponge baths to avoid getting my port wet because I just want to stand and cry in the shower instead.  I want to feel the water run down my face, cleaning my hair, and stepping out a new woman.  But, I can't.  Not yet.  I am dependent on this TPN to survive right now.  I realize that crying over not being able to shower like I used to is a little thing.  I tend to lose my cool over the little things instead of the big things.  Dishes left by the sink, I can't handle it.  Ants in the kitchen, I'm done.  Shoes left in the middle of the room, I just can't.  But the big items like failing health, not just mine, are things I can handle because I know I'm not in control of it.  God has those.  He has the little things too but for some reason, he's teaching me patience there too.

Right now, I am trying to accept this reality.  I have held on to so much hope for that overnight miracle that I never allowed myself to see the actual life I was living.  The reality that our life has drastically changed and won't be back to how we had it anytime soon.  The reality that I'm not getting better right now.  The reality that my family has to take on a lifestyle change as well.

Right now I have to remind myself to look back to how I was feeling six weeks ago.  I was stuck in the hospital, not able to go home when I thought I could.  I was in pain and I was feeling miserable.  But I only had up to go.  I have to remind myself that my body did heal from the surgeries and that yes, one day it might function again but right now I have to respect it and take care of it.  I still have challenges, but those challenges have changed.  Learning to accept that healing doesn't happen on my time is tough.  Really tough.  Maybe it's because I've been dealing with these issues for so many years that I think it's ok to say I've had enough.  I have had enough!  I don't want to be in pain anymore.  I don't want to feel nauseous from eating or from not eating.  I don't want my skin to stretch and hurt so bad that I want to cut it open and release the pressure.

The weight is coming on quickly but along with it is swelling and leg pain, a puffy face, decreased appetite and lots of nausea.  I have learned to keep Zofran all over my house and I'm thankful for the majority of the time, it works.

My health is not the only thing that we are dealing with in our home right now.  My beautiful grandma moved in with us one month ago because she has gone on hospice.  She is still doing well, considering.  She joins us for every meal where we get to hear stories and she praises my kids and feeds us love.  We are all so blessed having her with us right now as she goes through this transition.  I know many people think we are crazy but I would not have it any other way.  For one, I wouldn't be able to drive to a facility to visit her so having her with me daily is wonderful.  She's still teaching me cooking tricks, and beating the kids at cards.  She's amazing and a blessing to our family.

Alexis has been dealing with tummy issues for years.  Honestly, I thought it was anxiety but about a year or 2 ago, she started vomiting after eating certain foods.  We figured out which food was causing it and avoided it but then more problems starting popping up. We have a strong family history of food allergies on my side of the family so I took her in to see the doctor.  We learned that she had lost several pounds in a short amount of time and after a bit of frustration, we eventually landed in the right specialist's office.  She finally had blood work done and found to have multiple food allergies (although not severe) and a low IgA which could be an indication of Celiacs Disease.  We don't do easy fixes in this family.  We changed her diet and watched her symptoms improve although a little slip up will cause problems so Anthony and I are the only ones that will cook for her and if she goes anywhere she packs her cooler.  Even with the change of diet, she has developed joint pain and eczema, both signs of Celiacs.  Her GI doctor needs to confirm the diagnosis through an upper endoscopy which i was hoping we could hold off on, or avoid altogether.  She explained the importance of the biopsy results for her so we agreed and now we have to reintroduce the wheat for 2 months.  This is awful.  Alexis is so upset about having to eat something for 2 months that she knows will make her feel miserable.  All I can do is hold her and emphasize with her.  I can't take her pain away and that hurts us all.

This post was tough to write because it's not as upbeat as usual.  Not feeling well is wearing on me.  So for right now, I will sit and wait for the better days to come but I'm allowing myself to accept that our life isn't the adventure we thought we would take.  The beauty of it all is that we are together on it.  We are closer than ever and our love is stronger.  While we wait, we will dream of stress-free, pain-free, laughter filled days frolicking in the ocean together.  We will get there, but not right now.

Saturday, March 26, 2016

new attachment

If I were to write down all that was going on in our life today, you might picture a dark, stormy and scary time.  If you were to stand outside my home looking into the window, you would see love, light and joy. You would see a family laughing, a family together, a family helping each other out.  You would also see a mess but we can't have it all, can we?  This is a life we were given and an attitude we chose.  We all have choices on how we respond to life.

2 years ago I was on TPN for a few months after I initially was diagnosed with gastroparesis (partially paralyzed stomach)  The TPN which I received through a PICC line in my arm did what it needed to do and I was able to successfully put weight back on.  TPN and the PICC comes with so many risks that I really didn't want to ever have to go back on it.  I did pretty good eating on my own for over a year but last November my stomach stopped working as it should again.  I saw the surgeon who ran me through more tests, revealing grossly abnormal results and a surgery for a jejunostomy tube (j-tube) was scheduled.  A j-tube is surgically inserted into the small bowel and then you are connected to a pump and fed formula (similar to Ensure...not baby formula) for 24 hours.  I was told that I would stay overnight just to make sure everything was working well before leaving.  The original plan was to have the surgery and that night they would put water through to make sure it worked and then start on the formula. By morning, I could go home.  I ended up hanging out in the recovery room for my usual 5 hours instead of the 1-2 they told Anthony and then I was moved to a room where we would begin our vacation.  After not eating anything for 46 hours we finally started the feeds the next day and it was decided at that point I needed to stay another night to make sure it was working.  The goal was to be at 60ml per hour, starting at 20ml and increasing by 10ml each day.  I never got above 30ml before I needed to start decreasing and eventually stayed at 10ml.  My tummy wasn't loving it.  Big shock, I know.

That chocolate milk you see is what I mostly eat now.  I will still be able to eat real food but this formula will help me put weight back on and supplement what I can't get in orally.  As of right now, not much is going in orally or via the tube causing further weight loss.

Anthony and I have been trying to get away for years on a little overnighter so this 3 day trip to the hospital took care of that.  There is no way I would be doing as well as I am or have that smile on my face if it weren't for him.  He has been an incredible caretaker, never complaining about anything at all.  Not even when I woke him up every 30 minutes to help me go to the bathroom.  And now that we are home he is taking care of everything like a champ.  I am forever grateful and can't even express the love and gratitude I have for him.  I hit the jackpot.

I showed the kids the tube and Alexis made a comment about how small it was.  I asked what she thought it was going to look like and she put her hands together making a large circle saying that she thought the hole would be that big and I would have a tube connected that looked like a vacuum hose.  I was shocked.  I told her that must have been so scary to think that was what it would look like.  Her eyes welled up as she smiled and said, ya.  What our kids have been put through their entire lives doesn't seem fair sometimes but then I step back and think they are the luckiest kids in the world to have two parents who love each other more than love itself, a supportive family and virtually, a stress-free life.  We have it so darn good that I sometimes forget that having a sick mom might be frightening and suck sometimes.  

 Last night my healing came to a screeching halt.  I could feel my intestines filling up over the past few days and not emptying, my abdomen was becoming distended and I just wasn't feeling great.  I decided to take a shower so I unhooked from the IV pole, flushed my tube and while pushing the water through with the syringe, the syringe popped out along with water and then the tube filled with bile.  I immediately sent a message to a friend who has a ton of knowledge and has given me so much support and as we were writing back and forth, I started really not feeling well.  I got to the bathroom with Anthony and all hell broke loose, literally.  The incision area is still so painful so you can imagine the pain as my body was heaving but all I could think of was 1) I needed the paramedics and because I was getting ready to take a shower, they were going to show up and find me naked with bodily fluids all over and 2) I really really wanted that shower before going back in the hospital.  As those thoughts passed, I just prayed for the Lord to please stop the pain.  I was saturated in my own sweat, shaking from chills and feeling horrible.  Anyone that knows me knows that vomiting is close to death.  I really thought I was dying.  I called my surgeon and he had me stop the feeds and give my gut rest.  We both felt that not tolerating it was a result from trying to recover from surgery which is already a difficult task, plus not going to the bathroom in so many days so basically, all the formula going in had to come out and it pretty much exploded out.  Naturally, things like this happen on Friday evenings so the doctor wanted me going to the ER if I got sick again, my belly became distended again, or I developed a fever.  Thankfully, I felt so much better throughout the night and have realized this process is going to be even slower than I thought.  I really need it to work.  At this point, it's my only hope for obtaining proper nutrition which is pretty important when it comes to surviving.
Here is my new tummy.  I am really looking forward to being recovered from this surgery, having a working tube, getting proper nutrition, and being back on my feet soon.

2 Corinthians 1:3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

My friend Allyson (the one I mentioned above who has been so informative and randomly we were introduced through another friend and she happens to be one of Anthony's best friends cousin) posted this beautiful song and it touched me so much.  I hope you enjoy it as well.

Wednesday, April 22, 2015


I posted a new profile picture the other day and received an overwhelming positive response.  Such sweet comments, messages and text's followed.  Thank you all for making me feel so good.  I thought I would update you all on the inside of my body since the outside doesn't really match.

I think there is a fine line between denial and acceptance.  You see, I have a disease that I can't do anything about to make it go away.  Yet, I live with so much joy and happiness and I try so hard to ignore this disease destroying my body.  Ignoring it sounds like maybe I am denying it, right?  Like I'm not really accepting what's going on.  Except that I do accept it, I just can't do anything about it physically.  I can't take a magic pill and cure it.  I am aware of what could possibly happen with my body.  The doctors have told me but they have also told me that I am so unique that it's hard to tell what the future holds.  Being unique is great.  I prefer the uncertainty of the future over being told I have no hope of living another week.  I get to live.  I get to breathe fresh air every day and I get to laugh.  I get to choose how I want to feel emotionally and I get to choose, for the most part, how my day will go.  Choosing to throw the yucky out the window and let in the happy doesn't exactly mean I'm in denial.  I know what's going on with my body.  I feel it constantly.  I've accepted that I'm not normal and most likely won't be, ever.  But there's this thing called hope and I hang onto it so hard.  We have this hope as an anchor for the soul, firm and secure. - Hebrews 6:19.

This past year has brought some new challenges.  I had the PICC line put it and was on TPN for a short time one year ago and after coming off of it, I lost all the weight that it helped put back on.  I just couldn't get enough food in.  I saw the GI specialist and it was determined that I needed to undergo further testing before he could help me.  I put off one of the tests which prolonged everything else.  Anyway, I have since done all of the uncomfortable tests and they have all come back abnormal.  I will see the doctor again next month to discuss it all but at the last appointment he said that his hands are tied with me.  He said he was the top motility specialist in San Diego but that didn't mean someone else couldn't help me.  So, if you know of a great gastroenterologist that specializes in motility and understands mitochondrial diseases, send me their name.

The two most recent tests were done down at UCSD bright and early in the morning.  My dad took me to the first one which was the gastric emptying study.  We went down to their nuclear medicine department where I was fed a special breakfast.  I ate scrambled eggs with nuclear dye, bread, peaches and milk.  I actually really enjoyed it.  The tech explained that I had to wear gloves to prevent the spread of all the radiation.  I thought about that as I was chewing the radioactive food.  In my mouth. And then swallowing it and letting it sit in my stomach.  I then laid on a gurney and under this camera that would take pictures of my stomach at 1 minute increments for a total of 90 minutes.  The tech told me that most people are out of there after the initial 90 minutes so I was looking forward to going home.    I watched the white spot (my radioactive breakfast) on the screen for the next 90 minutes.  Oddly, I couldn't tell when it was moving down.  It really looked like it was just sitting there.  I started feeling what I always feel after eating, which is really crappy.  I asked the tech if everything was moving along like it should be and he said that he had to check with the radiologist but from what he was seeing, it looked like I would be staying for the 4 hour test.  Great.  My dad and I people watched the next few hours while I waited for my food to get out of my stomach.  I went back in for a final picture and saw the radiologist who was intrigued by my dysfunction.  As my dad and I headed out he asked if I was hungry and I said apparently not since my food is still in my stomach.

This is where I laid still for the test

Caution Radioactive Material (I was the radioactive material)

The following week I went back down to have a CT scan.  I arrived and was instructed to drink 3 bottles of barium sulfate.  I haven't had 3 bottles of anything in a very long time so I tried to explain to the nurse that the reason I am here is because my stomach doesn't work.  She said with out the contrast, they can't do the test.  I gave it my all.  Half way through the first one (which tasted like grape otterpop) I started crying.  There was no possible way I could do this, even with all the positive thinking in the world, it wasn't going to go down.  However, I had to because it was very difficult just getting the appointment and getting down there.  I somehow managed 2 full bottles!!!  The nurse took me back but had me wait on stand by because they wanted to make sure the fluids completely went all the way through my stomach and intestines.  We didn't want to take the scans too early and be a total waste.  I went back and did the scans and the radiologist came in when I was done to help me up and send me on my way.  The rest of that day I was absolutely miserable.  I needed to get tons of fluids in my body to flush the barium out but there was no way anything was going in.  I got hooked up to my IV and spent the rest of the day on the couch, in pain.

A lot of time is spent like this now.  

Pain is a new symptom that has snuck in and kind of put a cramp in my style.  There's not too much I can do to alleviate it other than a long bath and bed but that's not always possible.  There are many days I spend more hours laying in my bed than I do out of it.  The kids are so easily adaptable and have no problem hanging out with me in my room.  They don't make a fuss at all when I say it's time to get ready for bed... at 6:00.  And they won't complain when I say it's time to leave (a party, the park...). They get it.  I scored big time with these kids and husband.

I am blessed.  Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who live him. James 1:12

I'm accepting all that is going on but I still hold onto the hope that I really will heal.  Having that to look forward is much better than just thinking about not ever getting better.  We can call it denial if we want but I call it faith that our God will heal.

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.

Thursday, April 3, 2014


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!

Tuesday, February 25, 2014

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.

Friday, September 20, 2013

A health update

A little health update:

I had surgery last week that went very well.  Except for the anesthesia.  I had a biopsy of my breast which came back great.... just extremely dense fibrous tissue all matted up together and something else that I can't even pronounce let alone spell correctly.    Doesn't matter though because it's benign and that's good enough for me.  My dad reads this so that's enough talk about my boob.  I never had pain from the procedure which is great, however, I experienced a tremendous amount of muscle weakness.  So bad that for a couple of days I couldn't even make a fist.  Breathing was hard and controlling bodily functions was tricky.  Too much info on that one?  Sorry.  I slept a lot and laid flat because as soon as I was standing for a couple of minutes I became very dizzy.  All is good now.  I'm back to bench pressing and cross fit... totally kidding.  But I can stand and walk which is great.  We appreciate the little things around here.

After 15 months of waiting, I saw the Mitochondrial Specialist down at UCSD.  Some more of the test results came in and revealed where the deficiencies in my DNA cells are.  The doctor spoke to me while educating 3 other MD's who were doing their fellowships.  I nodded along with all of the them and wondered if they had any idea what language he was speaking.  I didn't.  I looked over at Anthony and he seemed to be following along so I figured when we got in the car I could ask how the appointment went.  After class, I mean the appointment,  the doctor asked if I had any questions.  Just one... the same one I always have.  Have their been any cases where a patient completely recovers and regains all the health they once had?  The short answer as always was no.  BUT, medicine is coming along so quickly and we are just a couple of years away to finding a way to reverse the damage.  Good enough for me.  Actually better than that.  I felt so much relief hearing how close we are.  Even if I don't get my health back, I know that if I passed this on to my children or if they pass it on to theirs, there will be a cure!!!  I hold on to that hope with every ounce of energy I have left.  I have a complex 1 deficiency and another one.  (I am having the report sent to me because apparently I can't remember everything.)  There were also other genetic abnormalities found that are good to know as far as drug interactions.  Now I know not to interact with drugs.  People with complex 1 deficiencies also have a really hard time with anesthesia.  That makes sense now looking back at all those surgeries.  The unfortunate part is that because of the nature of the disease there will most likely be more surgeries in my future.

Since we are talking about health... and talking about me... I thought I would clear up a few misconceptions about mitochondrial diseases (and chronic illness in general).

What is it?

"Mitochondrial disease is a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells. Mitochondria convert the energy of food molecules into the ATP that powers most cell functions.
Mitochondrial diseases are sometimes (about 15% of the time)[1] caused by the mitochondrial DNA that affect mitochondrial function. Mitochondrial diseases take on unique characteristics both because of the way the diseases are often inherited and because mitochondria are so critical to cell function. The subclass of these diseases that have neuromuscular disease symptoms are often called a mitochondrial myopathy."(Thanks Wikipedia)
If you want to read more about it click here.

So I have dysfunctional mitochondria, we all knew I was dysfunctional, now we know why.  

Nothing I did or didn't do caused this disease.  It's just how God made me and I am OK with that.

It can't be fixed by using my mind.  I tried.  Wyatt even tried using Jedi force to make it disappear.

I am not depressed.  The opposite actually.  I have so much love and appreciation for life that even when times are tough, I don't get too upset.  It is what it is.  It's not like I have a disease caused by something like obesity and if I just lost weight I could be healthy.  If I can't fix it, why stress?  I am also completely aware of how good I have it.  Things could be so much worse and I am so incredibly grateful for all the amazing blessings I have in my life.  They are countless and I make sure to thank God for them all day, everyday!!!

I look "normal" on the outside and always will.  The disease is inside my body in places that you can't see.  Along with many other people with chronic illnesses we try hard to make ourselves look good.  No one wants to look "sick" (which I'm not really sure what sick looks like)  Hearing, "Oh you look so good though" translates to, "You must not be sick."  I appreciate the compliment but make sure you are not judging someone by how they look.  Like when they walk out of their car and into a wheel chair.  "Gasp, she can walk!"  Seriously, not everyone in a wheel chair is paralyzed.  Common misconception... happens all the time.

I have no doubt I will be healed.  I will be patient and wait on His timing.  In the meantime I will continue to be grateful and joyful everyday of this beautiful life I get.

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