Happily Ever After

Right Now

2016-05-02T18:56:00.000-07:00

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.

new attachment

2016-03-26T19:50:00.002-07:00

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.
https://m.youtube.com/watch?v=1spkhp41ig4

update

2015-04-22T07:14:00.000-07:00

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.

It's been a while...

2014-09-15T07:30:00.000-07:00

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

2014-04-03T07:01:00.000-07:00

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

2014-02-25T16:48:00.000-08:00

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.

A health update

2013-09-20T18:15:00.000-07:00

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

2013-08-24T13:43:00.000-07:00

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....

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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

2013-07-23T12:47:00.000-07:00

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

2013-06-14T07:13:00.004-07:00

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

2013-06-10T09:54:00.000-07:00

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

2013-03-12T11:22:00.000-07:00

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

2013-02-07T10:09:00.001-08:00

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

2013-01-31T19:12:00.001-08:00

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

The day she turned 8

2012-12-31T09:29:00.000-08:00

The sun rose and awakened my body. It filled my heart with warmth as I looked over at an 8 year old girl standing next to my bed with a grin reaching ear to ear. Happy Birthday, Alexis.

When I took the dogs out I was greeted with this view, snapped a shot and shared it to Facebook and Instagram.

Happy Birthday to my beautiful daughter. You are the sunshine in my life. You are the rays of light that shine in my heart. You are the gift from God that made me a mother. You have blessed our lives with more love and joy the past 8 years than you will ever know. Happy Birthday!

As requested, Alexis got breakfast in "bed" (sleep over in mom's room) with her American girl doll.

The above photo is a mother/daughter charm bracelet and below is a pink cross with little pearls that she wanted.

After breakfast and presents we headed out in San Diego's storm of the year and went bowling

With cousins

Twins

Anthony's twin Dominic and his wife Julie and my twin Leslie with her husband Alex

The sky was so amazingly beautiful on our drive home

When we got home and the skies cleared we saw so much snow on the mountain. Proof that it snows in San Diego.

We had a wonderful day filled with so much laughter and family time!

Happy Birthday Alexis!

8 years ago today

2012-12-29T15:37:00.000-08:00

8 years ago today it was pouring rain and cold outside. Anthony was at work and happened to get himself in the newspaper while doing a swift water rescue on a couple that was stuck in a flooded area. I was pregnant and "nesting" as I dragged my mom around town to every store to make sure everything was done. I wasn't due until January 20th but something was telling me I needed to get a pedicure, stock my fridge and grab a few things from town. With each stop we made my mom was begging me to slow down, relax and saying ridiculous things like "this can all wait." The weather was actually bad for SoCal. While in the produce section of the grocery store I leaned over the cart and had a huge contraction. Not thinking too much of it other than maybe I did need to take a break, we kept shopping. We went back to my house and had a nice salad and I drank about a half gallon of water. Again, still in complete denial that I would go into labor this early. I sent my mom home even though she asked to stay the night. I assured her I was FINE and sent her on her way. You see, she didn't want to have to drive back in the middle of the night. Fast forward to 2:00 a.m (December 30th) and I awoke to a pop and then my water broke. I called Anthony and told him what happened. I also said my contractions were 1 minute apart but they didn't hurt much at all so I'm sure I can wait until he gets home at 8:30. He said ok and went back to sleep. I hung up and cried. Called my mom and heard something on the lines of "I told you so" and the reassurance that she was on her way. Anthony called back about 2 minutes later and I was still crying because I didn't want to be alone. An hour later he showed up with his partner and we gathered a few things and hopped in the ambulance. (I got to ride shotgun) We got checked in and Anthony told me he would probably have to leave. Thankfully he didn't. Someone came in to work for him and it all worked out great. I quickly pushed out a healthy baby girl as the doctor was running in.

Today Alexis celebrated her birthday with one of her friends.

First stop was the nail salon

I was inspired by this craft on Pinterest (I'm not sure where craft ideas came from before Pinterest)

Make a wish beautiful, I'm making one for you too!

Tomorrow morning she has requested breakfast in bed with her American girl doll and bowling with the family.

I'm looking forward to celebrating 8 wonderfully blessed years with the girl that changed my life forever and made me a mom.

Merry Christmas

2012-12-25T22:18:00.000-08:00

Christmas time

A time for feasts

A time for laughter

A time of beauty

A time for family

A time for love

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Christmas Day

This guy had to be woken up by us after his 3rd night in a row not sleeping much from his croup.

Waiting patiently for her present

The reindeer helped themselves to the carrots from our garden.

A beautiful Christmas sunset

Merry Christmas to all and to all a good night!

playing catch up

2012-12-23T09:06:00.000-08:00

Thanksgiving... a beautiful day surrounded by family and food.

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We got fancy with our Christmas card photo this year. Sitting around one evening I told everyone to comb their hair and put on something that didn't have holes in it. I set up the tripod, grabbed the remote and just like that, a family photo!

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I had an appointment down at UCSD with an Infectious Disease specialist. We basically had to rule out any type of infection that would have caused the fever that lasted all summer. The mystery was solved when the weather cooled off and now my body temp is 96*. My body just can't regulate it's temperature so when it's hot outside, it's hot on the inside and when it's cold outside, baby it's cold in here. Anyway, while sitting in the waiting room I started reading my Readers Digest (I brought with me since I am such a germ freak and can't touch anything in a doctors office) and this is what I read. Not a good idea.

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Wyatt turned 6 years old!!!

He invited a few of his friends over for some breakfast and then Anthony took them on a hike. Wyatt's dream day.

To finish Wyatt's birthday, we went to the Fire Station for the annual Christmas party.

I've got a lot more to share so stay tuned to more posts coming soon :)

love and marriage

2012-11-09T07:36:00.000-08:00

Go together like a horse and carriage...

I am by no means an expert on marriage and relationships. I am however in a successful and happy marriage that went through trials and errors just like everyone else. We have just learned to overcome and find that love is the most important part of a happy life. We choose love instead of running from it.

Anthony and I were recently talking about how happy we both are. How happy our marriage is, how happy our family is and how much joy we have everyday. As we reminisced, we remembered it wasn't always quite as "happy." Anthony and I had our first child a year and a half after getting married. We were still figuring out life as a married couple, just purchased our second home, and Anthony had just been hired on full time at the fire station and took on extra projects at work that added to all of the new stress. When our daughter was born, life changed more than I could have ever imagined. I was so blessed with this tiny life we created together even though she NEVER slept and screamed until her tiny little voice was hoarse, every single day. I quit my job to raise our child and we just moved to a new town where I didn't know anyone. I tried maintaing my old friendships but everytime I would get on the phone, Alexis screamed so loud that the phone calls started getting less and less as my need for adult conversation became desperate. I wasn't warned about losing the only identity I had ever known and feeling so lonely at a time everyone says is so magical. I made a lot of mistakes in my marriage early on and one of the biggest ones was resentment. I actually resented my husband for going to work. He was earning a living for our family and allowing me the ability to stay home and raise our daughter but in my sleep deprived eyes, all I saw was him having an escape. He got to go hang out with other guys, sleep a little more than I, and keep his pre-baby life. Or so I thought. We weren't communicating very well at this time because I started building a wall between us filled with jealousy, resentment and anger. I wasn't happy with how I looked or how I felt. Looking back I'm pretty sure I had post partum depression. Eventually I was getting more than an hour and a half of sleep and things started to get better. That is when we had baby #2. The second time around was a complete 180. We were in our groove. I figured out how to be a mom, I made some wonderful friends, I slept a little more and being a family became the only life I ever wanted. Looking back at the tough year, I completely blame myself for any problems we had as a couple. Sure, it would have been nice for him to let me sleep a little more but we made it through alive.

And then.... 3 years ago I got sick. This is a point in some couples lives where they take one of two roads. The road traveled together or the road traveled apart. It was never a thought for us, it was just what we do, we travel together. Our love has grown so strong through this journey. We turned to each other, held on, and haven't let go. We started walking through a life path that wasn't what we thought but we know we are doing it together. Realizing that my health wasn't going to be the same put the importance of love and life into perspective and gave us a realization of how precious life is. I stopped caring about the unimportant things that used to bother me. (that right there might be the best marriage advice I could give) I have put loving my family first and because of that, we have a happy family. It is so important for my family to know how much I love them.

Our marriage is so full of love and laughter that I often feel I could burst with glittery hearts exploding all over the room. That's how in love we are!

We are best friends, I trust him with all my heart. He is the person I can cry to when I just need to let it all out. He is the person that will be there to pick me up. He will always make me laugh until I snort. I will always be his number one supporter, his lover, his wife.

The two most important words to keep a marriage successful are: LOVE and RESPECT. When you show your spouse respect, love will be returned. It's kind of like the law of gravity. It just happens that way.

Here's a few things we do to keep our love sparking:

*Hold hands often

*Say "I love you" 28 times a day (or more)

*Have lots of sex

*Speak well of each other and of other people

*Think about each other and pray for each other

*Talk to each other and make a point of making eye contact. Take turns and be respectful.

*Keep your friends. Girls need girlfriends to talk to and shop with and do all the girly things and guys need other guys to have their man time and do whatever it is they enjoy together.

*Compromise

*Be compassionate towards each other by listening and caring about what the other one is saying.

*Help each other out. If you normally do the cooking, dishes, laundry... all the housework then men, surprise your wife by taking care of it once in a while. And women, take out the trash, scoop the dog poop, wash your car or better yet, wash his car. Most importantly, when your spouse helps you, show your appreciation. Let them know how special they are and how much help they are. When Anthony and I were first dating, he told me that I made the best peanut butter and jelly sandwiches. This was 11 years ago and I'm positive he doesn't remember saying it but it stayed with me and I am always happy to make him one.

*Date each other.

*Don't let the flame burn out.

Remember when your mom said to treat others as you wish to be treated? Well, be the spouse that you want to have. Give everything you have and you will receive everything he has.

"The secret to a long marriage is to have no secrets." ~Anthony Fieri

**disclaimer
I don't claim to have all the answers and we are both human. I guarantee we will make mistakes. But the one thing I know is we have vowed to love each other for better or worse, for richer or poorer and in sickness and health. We promised each other in front of God that we will always love each other. When things get tough, we turn to love. We choose love and we choose each other.

When you take that vow to marry someone, you are making a lifetime promise. Knowing there are no outs will always force us to work on and improve our marriage instead of running away. I'm not saying I disagree with divorce... there are situations that are unsafe to stay in. But if you are living a life for God, there shouldn't be a reason to end a marriage.

fall festivities

2012-11-02T09:26:00.001-07:00

With Fall in full swing, I have some photos of our recent festivities.

School Harvest Festival

My hot husband making a delicious dinner and the dogs waiting patiently for something to fall.

Decorating pumpkins with paint and glitter

Carving pumpkins

Crazy hair day at school

Halloween

i did it!!

2012-10-26T13:57:00.001-07:00

I donated my hair.

I didn't realize how attached I became to those extra 11 inches until I sat down in the chair and prepared for that first cut. My friend came for moral support, or maybe she was there because she knows I would have chickened out. Knowing that the hair was going to someone that needed it more than I did felt great. Alexis donated her hair back in June of 2011 and I started growing my hair out to do the same at that point. However, I became attached to having long hair.

I decided I would wait until Alexis' hair grew out and she was ready to do it again and we would do it together. But I became impatient (big surprise, I know) and decided I would just wait until May and do it for my 35th birthday but I realized that was 10 years away ;) Finally, I had enough of if. It became too much for me to take care of and was time to pass it on to someone else. Pretty cool that we can do that isn't it?

Immediately it felt so much better. I got into my car and didn't get it stuck in my door, or my seat belt, or the arm rest.

The hair will be sent to Locks of Love and I plan on growing it out and doing it again as soon as I can.

guest post

2012-10-19T05:00:00.000-07:00

Happy Friday Everyone! I have a guest post for you today by Holly from Healthy Living Healthy Life. Holly's blog is full of healthy tips, food, fitness and family. Check her out.... Hello there, readers! My name is Holly, mom to three and healthy living advocate! In fact, my passion for living a full life led me to begin my blog, Healthy Living Healthy Life! We all know though, that a healthy life does not begin and end with what food we choose to put into our bodies. To truly live a sound lifestyle, we need to be well-rounded, wise and considerate. Everyday I try to teach my own children these sentiments, but what better time of year to truly demonstrate what it means to live well than our current season: FALL AND THE HOLIDAYS!

Oh yes, it's the best time of year for more than a few reasons! Every year my family works with a low-income organization here in Phoenix (home-sweet-home!) where we adopt several families. We strive to pick ones where the children are close in age to my own, then our kids have the privileged of shopping for each of them. Talk about growth as a family, both on the individual level and the familial level.

Well there was one year none of us will ever forget. It involved a bed and many tears. Shouts of happiness and firm hand shakes. We will never, ever forget that year. What happened in the end, you ask? Come on over and check it out, I would be honored to share with you and to hear if any of you have any serving stories that are particularly poignant in your memories!

Also, I would love to hear about your healthy choices and actions on here! Let's link arms and build a platform for healthy mommy-hood, healthy self-hood (that's a word, right?) and of course, HEALTHY LIVING!

Image via

happy birthday, anthony

2012-10-17T17:55:00.000-07:00

Dear Anthony,

Today is your 34th birthday. I have been blessed to spend the last 11 birthdays with you and in those 11 years I have watched you grow from an amazing guy into an incredible husband and father. You give so much of yourself to others and never expect anything in return.

You have been right by my side from the time I first got sick until now. You give me so much strength and hope and when I want to be weak, you help me be strong. You have more on your plate than most people yet you never complain. In fact, you take on more.

I love how grounded you are and how you keep such a level head about everything. When something happens I'm the first to jump up and want to react, sometimes inappropriately. You balance me in that aspect and believe it or not, you have taught me so much about how to handle situations that are not in our hands.

I love how much you have taught me about life in general. I love watching you teach others about life. I love your happy nature, your ability to bring joy to others.

I love watching the kids get so excited when you come home. I love how you always have time and energy to wrestle them even when you've been up all night at work. I love that you are their father and you have such an important role in their lives.

Together we made a family that I am so grateful for.
Together we live a life full of love.
Together we will walk through this journey of life.

I love you so much!!

HAPPY BIRTHDAY!!

{some pics from the past year and a half}

happy camp

2012-10-15T14:50:00.001-07:00

This past weekend we took a long overdue family vacation. My sister and I have been blessed with such awesome neighbors and they both generously loaned us their RV's for the weekend. My sister lives in Canyon Lake, "a bit of paradise". Inside the bubble is a campground called Happy Camp and it was everything happy this weekend!

As soon as we arrived Anthony took the kids fishing. Wyatt was so determined to catch a fish so every chance he got, he was out there with his pole.

First thing in the morning, we watched the sunrise from the dock. Still determined.

Not going to give up....

HE CAUGHT ONE!!!!

She didn't catch a fish but she tried very hard to catch a duck or two.

It was so wonderful for all the cousins to be together for the weekend.

That's my husband using the lily pad as a wrestling mat.

After the fishing, we went skiing. That's my nephew who just turned 7 on a slalom ski.

Seriously, he's 7.

After skiing he showed us his stunts on the wake board.

Guess what happened next...

Wyatt and Freedom trying to catch a duck.

sisters

my sister and myself with our girls

My brother, sister and I

Our crew

We had such a great time together!!! Can't wait to do it again!!

life lately

2012-10-01T07:02:00.001-07:00

Life lately

It's been nice to get into a bit of a routine, the inconsistent kind that I prefer. School has been getting a little easier now that we are in the 5th week... only tears, no more screams. Here are some pics of what we have been up to.

Waking up to beautiful sunrises of course.

The stache is in full force with the wife very ready for Stachetoberfest on October 8th.

Alexis had her first Brownie meeting and of course I cried. All the songs that I sang when I was in Girl Scouts came right back to me. I am so excited for Alexis to make the same wonderful memories and friendships that I made.

We had a couple of caterpillars and watched the life cycle unfold from our mantel.

When the butterflies came out of their cocoons we took them outside to set them free.

My sister Leslie and I on our way to our mini High School reunion. It's been 16 years and thanks to Facebook, one of our friends was able to put together a party for everyone to get together.

I didn't make it long that night and didn't take many pictures. But the people that I did see, it was so wonderful to catch up and re-connect!!!!

A huge thanks to Chelsea here for putting it all together!!

The next morning, Anthony and I woke up early for the Care to Wear Pink Event that North County Fire Protection District and the Kairin Clinic put on. It was a great turn out but this picture shows how slow we (I) were. There is one man standing down there holding the cheering sign... everyone had already finished the 5K but my scooter only goes 3 mph. As our friend Camille said, anyone can place in the top 3 but coming in last... only one can do that :) Thanks for walking with us, Camille!

The rest of that day was spent sleeping on the couch.

That's what we've been up to lately... how about you?