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.

we went out last night

We took my mom out last night for her birthday to the Jimmy Buffet tribute band at Wilson Creek Winery.

And within 5 minutes of arriving this started....

***********************************************************

The highlight of the night (besides spending time with my family) was meeting this beautiful women.  Lynn is the owner of the Stampede.  12 1/2 years ago I met the man I will spend the rest of my life with at the Stampede and that was all made possible by Lynn and her husband pursuing a dream and being so successful!

Love

Love

10 years ago I dove (just kidding, I jumped feet first) into an adventure of a lifetime.  Marriage.  I married my best friend who makes me feel complete.  He's the guy I tell my secrets to, share my dreams with and explore the world (ok, just Southern California) with.  He's the guy I confess my fears to and he's the guy who comforts me when I'm scared.  He is my rock.  He is my partner.  He is my lover.  

He is my husband!

We have walked through trials together, we have witnessed miracles together.  We have experienced so much joy together.  I am so blessed to have this man to share the journey of life with.

I love him!

 We took the 1 and stopped in Laguna Beach for lunch, drove a couple miles north and played around Crystal Cove and had the best milkshake and fries and then drove through New Port.  That's when exhaustion took over so we headed back home for an early dinner.  I loved having the time with just us, talking about whatever we felt like, driving where ever we wanted.

I can't wait to see where the next 10 years take us!

wyatt and brooke

Wyatt has been having stomach pain for a while now and after seeing the GI specialist it was determined that he needed to have an upper endoscopy.  Brooke, my niece has also been having stomach issues and after multiple tests she also needed an upper endoscopy.  The cousins have 2 different GI specialists in 2 different cities.  Brooke was scheduled for hers before Wyatt and then rescheduled for the 12th of June, this time with Wyatt's doctor.  A week later I was scheduling Wyatt's and they gave me the exact same date and time as Brookes.  How perfect is that?!  It made everything so much easier for all of us.  Especially the kids.  (and me)

Wyatt was a little apprehensive but super brave.  We had been promising him no shots because that's what they told us.  The routine is that the kids get gassed and then they put the iv in them.

Well.... because of my problems with anesthesia they needed to take the same precautions with Wyatt.  Which meant: no gas!  He needed to have the drugs pushed through the iv.  Anthony was the lucky one that went into the OR with him.  I was taken to the waiting room across the hall to wait.  The poor kid was poked 3 times before they got it!!  I could hear him screaming for me the entire time.  So I sat in the small waiting room crying for him just as hard.  The screaming stopped (his, not mine) and Anthony joined me in the waiting room.  We sat for a whole 7 minutes before the doctor came in.  Wyatt went to recovery and Brooke went in for her procedure.  It seemed like forever before the nurse came and got me to help wake Wyatt up.  I went into the recovery room and saw him completely out, with bubbles coming out of his mouth. The nurse gave it her all to wake him but he was too sleepy.  Meanwhile, Brooke was wheeled in and she calmly opened her eyes, saw me and smiled.  I left Wyatts side to be with Brooke.  They I started to wonder why Wyatt wasn't waking up yet.  He finally opened an eye and muttered out the words, "they poked me" and then went back to sleep.  The nurse moved him to the post op room and I sat with him still waiting for him to wake up.  When he did open his eyes he was so dizzy so he just kept sleeping it off.  He didn't have the same anesthesia that his cousin had and they flushed Wyatts but he still had a bit of a hard time.

Once he was up, he got his popsicle and started with the repetitive questions.  I should have recorded him.

These two did so great!  I'm pretty sure I had more tears than the two of them combined.

Now we wait for the results and pray for answers.  It's not fair that these cuties have to have so much pain everyday!  I am in awe of their bravery and pray they can feel better.

hello

Hi!  It's been a while hasn't it?  I think instead of trying to play catch up, I will start with the beginning of summer vacation.  Start with the most recent events and see how well I can keep it up.  With the longer days, the warmer nights, the extra giggles I know I will have lots to share.

Let's begin with the last day of school... the day the kids have been waiting (and crying) for since last August.  We celebrated with an impromptu party at the park.

The next morning, the kid and I hopped in the car and drove to Laguna to stay the night with my grandma.  I haven't taken the trip up their alone in a while (because the drive sadly wears me out) but I figured since we were going to spend the night it would be fine.  I made it about 40 minutes and was completely exhausted.  I used to LOVE road trips and now I can't handle 40 minutes??  Whatever.  Soon after we got there, my grandma sent me to bed for a nap.  What a good grandma.

We got up the next morning and headed home with this pretty lady to celebrate her 87th birthday!!!

The cousins all came to help celebrate too!

Which meant I got to hang out with my twin sister...

And my awesome sister-in-law with her freshly painted nails.

AND this guy!! Love him!

These guys didn't want to go home... so they didn't.

So here were are on day, oh I don't know, 4? of summer vacation and our brains are already fried.  We are looking forward to sleeping in, staying up late, lots of play dates, swimming, beach days.  Oh man, just writing that makes me exhausted... but happy!!

A little health update:

I was supposed to have a doctors appointment with the mitochondrial specialist in December (that one didn't happen because lab work was never submitted) so the appointment was made for May.  Unfortunately UCSD had a 2 day strike and needed to cancel appointments.  Mine was one of them.  I'm not sure when it will be rescheduled for but in the meantime I have been in contact with the founder of the lab where my muscle biopsy is.  The geneticist called me a few weeks ago and explained a bit about what mutations and variations they are finding in my DNA that are causing the disease.  We are getting Wyatt tested through this lab as well.  It will take about 4 months before we get the results.  I'm not ready to go into too much detail about Wyatt's health but he hasn't been feeling that great for a while.  He will be having an upper endoscopy on Wednesday (as long as his cold is gone) at Children's Hospital which I am really eager to get the results for.  I am a bit freaked out about the anesthesia because of my reactions to it but I know he is in a great  place and in really good hands.  So, if you would... could you pray for my little guy?

 Feels good to be back :)  Thanks for the encouragement to start blogging again.  (you know who you are) 

Happy Summertime!!

trials

The truth about trials was the topic of a recent sermon at church.  It couldn't have come at a better time.

Our pastor said, "God works in our lives through difficult trials to accomplish His purposes and bring us to a mature faith."

I'm expecting to become extremely mature very soon.

My mitochondrial disease continues to get worse, yet I haven't been able to see the specialist since last June.  We are still awaiting a biopsy result that should have been done by December (for the December appointment that never happened) but unfortunately the order was never put it by someone.  Meanwhile, my muscle weakness has progressed to the point that I can't do a single sit up.  I tried so hard.  I used every muscle I had, tried willing myself up and still... nothing.  A few minutes in the garden cutting vegetables caused so much pain in my legs that it took four days to recover.  Crazy!!  The muscle pain I felt from that was similar to the pain I had after walking in the Breast Cancer 3 Day.  Just from a couple of minutes of straining.

Trials are to be expected.

The disease is progressing, I can accept that.  I try to push forward but when we look back and realize that a year has passed and we have missed out on so much we lose hope.  A lot of hope.  Hope is what keeps me going but when there are no answers, no cures and no improvements what do I have to hope for?  A miracle?  Yes.  A miracle.

"Trials defined:  Hardships which God either permits or causes in our lives to accomplish His purposes, if we respond in godly obedience."  So instead of saying, "Why Me?" I need to say, "What are you trying to teach me?"

I received a letter from insurance with two denials for care and one very large bill because somehow authorization for something had never been submitted.  So they leave the bill in my hands.  All because one person didn't not do her job... again.

Joy is to be our response.  And it is my response because I know that I am not in control.  Obviously.  I wouldn't wish any of this on anyone.  God's plan is to be trusted and that is what I am doing.  I am trusting that good will come from this.

Wyatt's ENT has said that she needs to preform a procedure where she goes into his throat to see what is causing him to have such severe episodes of croup as frequent as they are and as old as he is.  She speculates that his coracoid is malformed but needs to go in and see.  I have been putting this off for a year now but with the three most recent episodes he had, ending us in the ER, I know it is time.  I just can't bring myself to put him through any unnecessary testing and especially putting him under anesthesia.  That is my biggest fear.  I know I need to trust in Him but as his mother it is so hard to do that.

When I feel like I can't take anymore, I am shown that I can.  I am handed a child with a horrible case of the stomach flu.  This is one thing I cannot handle.  At all!!  It has lasted five days!!!  And just when I think how funny His timing is and we are going to survive, another child wakes up with a tummy ache and fever.  Seriously??!!!  I keep telling Him I CAN'T handle this.  I really can't and for some reason I keep getting trials thrown at me and for some reason I do get through it.  It leaves the days dark and the nights long and all I have is hope that we will pull out of this.

Count it all joy when you fall into various trials. james 1:2  I live my life in joy and will continue to live my life in joy.  There is so much beauty and love that surrounds me daily and I couldn't be more grateful for it.  Yes, I have been handed some icky trials but I will grow from them,  I will learn from them and apparently I will mature from them :)  I am so grateful for every part of my life.

There will be rain but there will also be sun and some days... there will be rain and sun together!

You know what happens with rain and sun?  Rainbows.

surgery

First of all I would like to thank everyone for their warm wishes, prayers, text messages, phone calls, e-mails and most of all, love!!  Every time I felt so alone I would check my phone and realize I was not alone. Thank you!

I was going to write this post yesterday when I got home from the hospital but I thought twice since I was so looped up.  It would have been funny though.

I was scheduled for a laparoscopic surgery after an ultrasound revealed a few growths inside of me and to explore where the pain was coming from.  You can read about that here.

I have had so much anxiety the past week about this procedure and was ready to cancel so many times. I cried {hysterically} more times than I can count and when Anthony came down with the flu the day before I didn't think I could handle anymore.  Nothing was going as planned and I was freaking out.  I am so grateful for my friends and family that listened as I told them all my irrational fears since I couldn't go near my husband who was supposed to be my rock.

My mom took me to the hospital which I was extremely grateful for.  She's the only other person I will let help me in the bathroom.  As soon as we arrived at Palomar {the new one} we got star treatment.  We were escorted up to the surgery area and met with a volunteer to go over a few things.  Right away a nurse came out and got me.  I said good-bye to my mom and started crying.  Not a huge surprise.  The nurse gave me the best hug and told me everything would be ok.  She took me to a really nice room and another nurse came in for another big hug.  She was so wonderful!!  I got comfy in my bed and they brought my mom back in to sit with me.  Since I have "so many rare diseases" as the doctor kept telling everyone, they were taking extra precautions.  I did have a hard time regulating my body temperature and when it went up to 102 they removed my comfy warm blankets.  My fever never did go away.

The anesthesiologist came in and was by far the best one I have EVER had!!!  He was so on top of everything.  He was a little disappointed that he didn't have a heads up on my case because he needed to double check on the types of meds I can use.  I gave him the recommendation from my neurologist and for the first time, I had a "normal" wake up.  I still shook but I wasn't having the usual uncontrollable convulsions followed by a body temp drop to 95* and then a 5 hour stay in recovery just trying to wake up.  This time I woke up feeling pretty good.  Still had a fever but I was happy I didn't get hypothermic.  Never felt nauseous and was actually really hungry.  I love Zofran!!  And I love Demerol. 

The doctor came in and told me they removed 2 or 3 {I can't remember} cysts from my left ovary and she removed adhesions and scar tissue {from the hysterectomy 4 years ago} from my right side.  The masses in the liver are deep in the tissue and she can't see them with out cutting it open so I will be seeing the GI specialist in a month.  I am praying that we can monitor them through imaging and just leave them alone because I really don't want to have another surgery.  It kind of hurts.

The nurses, volunteers, staff and doctors were all so wonderful.  The hospital was great and I am going to go back to check out the cafeteria.  I heard they have a nice patio.

I came home and soon after my babies were brought back to me.  They stayed with me in my room since Anthony is still in quarantine.  I haven't had a chance to catch up on my t.v or do my crocheting but the rate that I'm healing I think I will have plenty of time.  

The pain meds wore off later in the evening and then I remembered I had surgery.  I was so uncomfortable and of course I didn't fill my prescriptions.  I didn't think I would need anything stronger than ibproferen.  I fell asleep and Wyatt woke me up at 3:00 to tell me he was scared.  Talk about feeling helpless.  I told him to go back and lay down and I would stay awake so he had nothing to be scared about.  It took some coercing but he finally did.  I kept my promise and stayed awake. Until 6:00. The kids woke up 50 minutes later....  The pain was so bad but I didn't want to wake anyone so I dealt with it.  Anthony's fever is gone so I think I might welcome him back to our room for some help.

Thank you again for all of the support and prayers.  You guys were my cheerleaders and we did it!  We are on the road to recovery now and I couldn't be more grateful!!!!!

health update

It's been a while since I have taken the time to sit down and write. I miss it. The kids are lying in my bed watching Full House and since I have seen this episode (15 years ago) I decided to take the time to give a little update.

I am going in for surgery on Wednesday. Ok, I will back up. I have been experiencing pelvic pain for several months. After trying a couple different things I finally had an ultrasound. The first ultrasound showed nothing which left me feeling so defeated. I knew I had pain but not knowing what was causing it was so frustrating. My doctor referred me to a gynecologist to further investigate. I mentioned I had been having some abdominal pain which I was sure was constipation or gas. After an examination she determined I would be needing a laperscopic surgery to take a look inside and see what was going on. I've had a few of these procedures before and wasn't too pumped on the idea of being put under. Especially for gas. I had another ultrasound, both a pelvic and abdominal. I left the imaging center a little frustrated because I didn't feel the tech was very thorough. Not that I know much about ultrasounds, actually I don't know anything and when looking at the screen I kept looking for a baby. Didn't find one. The process was supposed to take 30-45 minutes and I was back in my car less than 10 minutes later. A few days later I received a call to schedule surgery so I went ahead and put it on the books for the following week. After hanging up I wondered why I was having surgery.... So I called back and spoke with a nurse. She read me the radiology report in her sweet upbeat voice, telling me that there was a growth on my ovary and two tumors on my liver. Except that she used all medical terminology so I had her spell each word so I could look it up later. Huge mistake. When will I learn to not google medical symptoms or diagnosis'? The doctor called me the next day to explain that she will go in and remove what is on my ovary and take a look around to see what else might be going on. She said that I will need to be referred to a GI specialist after my recovery so he can take care of my liver. The tumors on my liver aren't an emergency and could wait a month but they will continue to grow and possibly rupture so they need to be taken care of.

So there you have it. I haven't been writing because I have been busy growing things in my body.

The idea of anesthesia freaks me out. The idea of feeling pain for a few days, freaks me out. Knowing that my body won't bounce back the way it should makes me nervous for what's to come. While I am looking forward to staying in bed, catching up on t.v, reading, and getting rest, I'm not looking forward to the discomfort of walking to the bathroom or any discomfort for that matter.

"There was never a night or a problem that could defeat sunrise or hope" B Williams