Today is June 13th. Two years since I went through the most traumatic experience of my life. Last year I told myself I wouldn’t mention it at all. I told myself that section of life was closed last year. I don’t know why I thought it would be easy to disregard the memories. I thought I could work through my feelings enough so I wouldn’t be as affected as I was last year. But you see the thing is almost dying shows you a harsh reality. You can’t just forget those feelings. When you are in what you think is your death bed feeling your body actively dying that feeling will never ever go away from my memory. Not knowing when my mom had to leave for home, if I would see her again. I wish I so so wish I could erase all of that permanently from my memory. The thing is though no matter how hard I push the memories away anxiety doesn’t forget them. PTSD doesn’t forget them. Your mind DOESN’T forget them. Today while my ptsd is actively trying to trick my mind into thinking it’s happening again. Tricking my body that one of the worst symptoms is here when it’s not. Today while being unstable with anxiety raging full force. I still am able to see the gift that I’m still here. It’s not easy having a chronic illness. It’s even harder to have anxiety and ptsd on this earth. Even though today is really tough and the rest of the week is too, I am reminded I was able to see first hand the power of God. No today I’m not smiling but in my mind and soul I know that God has me and will always have me. June 13th 2016 was the most terrifying day of my entire life. It was the day I was face to face with death. But it was the day I didn’t die. It was the day where God knew it wasn’t time for me to go to heaven yet. God saved me and carried me out of that storm and I know there will be many more storms in my life but if there’s anything I’ve learned through the trauma, the memories, and the pain is God is sovereign.
Everyone says the world is full of beauty. And it is. But the way everyone else sees the world will never be the way I see it. Many people don’t look at the world and think of what they will never be able to do physically. Like going to sleepovers, riding a bike even a scooter without getting worn down fast. My eyes don’t see what everyone else does. My eye sees the beauty and wonders of the world but they also see pain and turn moil. For so long I didn’t think I would ever experience anything challenging regarding depression and anxiety. Never did I once think that those two things would turn my life upside down forcing me to realize I wasn’t me anymore (in 2016/2017). I wasn’t genuinely happy. I was angry and bitter and jealous of those around me who could have “normal” lives. I was sad I was broken down I pushed and pushed and pushed everyone and anything away. I didn’t mean to but that’s what happened. I no longer liked leaving my house. I was so overwhelmed whenever I went anywhere. I skipped out on field trips, events that my friends were going to, even church because I was so used to my four walls. So used to being alone and only with my family. But after a while of that I felt worse mentally. For the first time in my life I had to force myself to socialize. Force myself to go to my homeschool co-op. Force myself to enter unpredictable environments socially. But why? Why all of the sudden was I like this? Why did I get so exhausted every time I socialized anywhere? I didn’t want it but at the same time it was my new what I thought normal. And it was. For a few months.
Then I realized over the course of 6 months in 2016 that my body started to shut down. Within a week in January I lost my ability to go to church, go to school, hang out with my friends, even sit up longer then 20 minutes. I lost my life I lost who I was. For 6 months I was getting sicker and sicker and weaker and weaker. Pretty soon I couldn’t eat anything. Soon after that I could barely hold a conversation longer then 5 minutes with me being alert and understanding. After that I couldn’t lift my head up from a pillow. I couldn’t understand anything. Soon after that I almost died.
For 6 months I was on my own. Yes my friends and family visited. They are amazing and I’m so blessed. But they have lives too. Not to mention I was exhausted having any and every conversation that came my way. After those 6 months were over I thought I was only struggling physically. But after reading the beginning of this post we both know that’s not true.
June 2016 was when I almost died. January 2016 was when it all started going downhill. For a few weeks after I almost died I was still in so much shock. I knew what I went through but at the same time my feelings didn’t process. But then one night as I was taking my medicine I realized what had happened and what I just went through. I just started uncontrollably sobbing. My doctor had just told me that if it wasn’t for that life saving highly experimental treatment that he tried I wouldn’t be here today. I was in complete metabolic and mitochondrial failure and shutdown. Having mitochondrial disease my whole life that was the thing we were trying to avoid. Mitochondrial failure. My meds didn’t work, IV fluids didn’t after it got to a point. My kidneys, stomach, gut, pancreas, and who knows what else were hours away from not working.
Guys it took me several months to realize that everything that had just happened during those 6 months. It took so long for me to finally realize I wasn’t being a big baby. That these were true valid hard things to deal with mentally. Now in 2018 I’m not currently struggling with depression but I am struggling with a ton of anxiety. I’m doing much better physically and thankfully emotionally. Socializing is still hard for me. I’m sure if you know me you wouldn’t even guess that but it’s still hard. I struggle with a ton of anxiety and social anxiety now. Over the past year I’ve been able to slowly get myself out of the trenches. I’m no longer currently struggling with depression. God blessed me with being able to not be medicated and get through it. At a certain point I didn’t even know if that was possible. At times I still struggle with anger and bitterness. I still struggle with feelings about me never being “normal”. But I’ve learned through a lot of therapy that every feeling I may have is validated. I’m doing so much better now physically but that never will mean if my mental struggles are good or not.
But why am I sharing this? I don’t know. Maybe it’s because this has been something I’ve wanted to write since last year. Or maybe because I want people to know that when you struggle with your health more often then not you struggle mentally as well. Even when nothing in life is wrong you can still struggle mentally. And that is okay.
Wow… A few months shy of a year since writing a blog post. I don’t know how that happened or why. I guess I’m not even sure where to start…
If you refer to my last blog post I wrote about everything that led up to my port surgery but I haven’t updated on here since. My port surgery went better then we expected! I thought for sure my GI system was going to go downhill all over again and I was so anxious and fearful some of my conditions would be triggered. But by the grace of God nothing and I mean nothing happened at all. Guys I can’t even explain the feeling and the joy I have about it all.
We went to a different hospital then where I got my broviac central line placed because that hospital didn’t give us a great experience. But this hospital we went to this time everyone went above and beyond. The anesthesia team knew ahead of time that I can’t tolerate propofol and not only that but they looked at what genes I had and called a hotline to make sure one of my mutations wouldn’t give me any cardiac issues during or after surgery! The surgeon let me outline where I wanted the port to go and made sure I knew exactly what they were going to do. Quite honestly surgery doesn’t bother me its just the anesthesia and meds that make me nervous. Oddly enough I don’t remember seeing the OR but I remember myself saying that the sleeping gas mask ( or something along those lines) they put on me smelled like artificial grape. The next thing I knew I was starting to wake up. It was such a weird feeling because I remember hearing things but my eyes weren’t opening and my body wasn’t moving. Talk about trippy…
After that I only remember bits and pieces of that morning and apparently when I was waking up I pulled out my IV and got blood all over myself. How on earth in my 16 years of life of multiple hospital visits pull it out? Also I apparently yelled they took my eyes because I couldn’t focus my eyes on anything. I don’t remember that part either. But my parents were sitting by me the whole time which I think made the situation even easier on me mentally. The part I do remember however, was that my throat was KILLING me. It felt like a combination of strep and tonsillitis. Ouch. I found out that was due to the breathing tube they stuck down my throat during surgery ( which they do to everyone when they are under) and apparently I wasn’t the only one complaining about that so that made me feel less whiny. Unfortunately nothing helped my throat pain I tried everything but it luckily subsided within a week.
By that night however, after a nap and attitude adjustment ( I don’t remember this but after surgery I was really really grumpy and my parents ended up going on a walk so I fell asleep and I was fine again when I woke up haha.) I was able to sit up and be wheeled around in a wheelchair! I wasn’t even able to do that at all with my central line surgery!
At the end of all this I am so insanely grateful for my experience, for my body staying stable, for the medical team going beyond their duties and actually work with my doctors, and I am the most thankful that my central line is far gone and a port was put in it’s place. Oh by the way I asked for my central line after surgery because I wanted to see it and they gave it to me! I threw it away quite a bit ago though…
***SURGERY WAS IN APRIL 2017
My oh my has it been a while since I have written anything on here. Quite honestly I don’t know why exactly. A lot has changed since I have written on my blog. I know I’ve promised to get back into writing blog posts for several months now but it hasn’t happened. Again I don’t know why exactly…
So many things have happened since my last post like I mentioned but nothing necessarily big has happened with my health since June of last year. This year however we have already been through a roller coaster. All of January I was fine but towards the end of February I had to be put back on fluids for a while again. I started feeling really shaky and I gave it 2 days but it just wouldn’t stop. I’ll be honest what I’ve dealt with so far this year is nothing at all like last year so it wasn’t the worst thing ever but it was still hard. Anyways I got on fluids because I didn’t want to risk it. But even with fluids I was still pretty shaky. We did blood work and it was all fine except my albumin which is a protein in your blood was low. Before we found that out my doctors basically said there was nothing they could do. They didn’t have much to try. This made me break down but long story short the albumin infusions I’ve been getting has majorly helped me and I got off of fluids March 15th which was 2 days before my birthday!
Something SOOOOO exciting is I AM GETTING A PORT A CATH!! Yes I am getting my central line out and getting a port placed!! I’ll be able to finally swim and take showers when it’s not in use!! I am SOOOO SOOOOO excited!! The surgery is on MONDAY!! Sunday afternoon/evening we’ll go in and I will be put on fluids to keep my blood sugar stable when I’m fasting and to hopefully help prevent my body from crashing. I never thought I would ever be excited to go to the hospital yet alone surgery! We are having it done at CHLA which was where I was inpatient in June. We’ve already met with the surgeon and my doctors know her and she’s great! My port will be located under my left clavicle which will be amazing! I’ll be honest though I’m terrified. Last April when I got my central line placed my gut shut down because of the anesthesia. That was horrible. Horrible. This year I am way healthier and stronger than I was last year when I had my line placed but the risks are still there. I’m not scared about the surgery itself or the pain I know what to expect pain wise. But I’m terrified of how I will recover. I’m scared my GI system is going to respond bad to the surgery like last year. Quite honestly I can handle nausea, no appetite, pain, and not being able to eat as much. But I CANNOT handle not tolerating food. If you have dealt with not tolerating food you know how brutal that is. I haven’t had much anxiety lately until this week. I think that’s okay and it’s okay to be scared. Yes I am scared and yes my body could misbehave all over again but I can’t let mito hold me back from something I’ve worked so hard for. Because let me tell you having a central line which is an open wound in your chest and your allergic to everything on earth related to dressing change supplies it’s so dang annoying. So ultimately I’m so excited but so scared at the same time. But hey what’s life without a roller coaster of emotions?
Yeah I know it’s been 3 months and not one blog post. I am so sorry.. I do want to catch you all up on everything so keep your eyes open for more blog posts over the coming months. This post is basically going to be about how 2016 was for me. Let me just say it was not my year.
The year started great I went on an awesome field trip to a museum on January 4th it was awesome except for the part of lying to my parents that I was fine when I woke up sick, and went to the museum without my wheelchair. And during that field trip I felt like I almost passed out which has never happened before and I had just eaten to so it couldn’t have been my blood sugar. But I ignored that and my parents only found out about me almost passing out a few months ago…whoops…. So that whole rest of the week I was sick but by the coming week we thought I was all better. Well a whole day of my homeschool co-op which was from 8:30am-3:30pm and I was very shaky and it got worse the following day so we went to the ER. We thought we would only be there for a day at the most because this was easy I was just shaky so it shouldn’t take more then a day to get fluids and feel better. Well 10 days of being in the hospital later I came home on a PICC line and was unable to be weaned off of continues fluids. Well that PICC failed so 2 days later I got another one in my other arm. February I wasn’t getting better but I wasn’t getting worse well at least most of February I was just dealing with a lot of dysautnomia and POTS issues. But February was the month we found 2 out of my 3 AMAZING doctors! The end of march was when I started not being able to eat as much food as normal and my stomach felt off and I was nauseous and had the feeling in my throat I get with CVS episodes. My doctors said I had dysmotility which is the slowing down of your gut so I was put on a med to help that and my gi issues were still going on but I wasn’t nauseous. Well in the middle of April my PICC line failed and I then got a central line which was more stable and permanent but it was surgery and I was put under anesthesia. A week after the surgery all heck broke loose. I could barely tolerate any food, I was nauseous, my stomach was distended, I could barely eat, I was gaining more weight even though I was barely able to eat, and I had the feeling in my throat. So in May my doctors put me on TPN which is nutrition. When I was put on it everything calmed down a majority of my symptoms were gone or not as bad and I wasn’t swollen at all. Well just as we thought we found the answer all my symptoms came back but worse than before.. I was in agony but that agony hit an all time high in June. And on June 13th I was slipping in and out of consciousness, with my heart rate being abnormally high, I was breathing so shallow, my blood pressure was very low, my kidneys weren’t working, nor my gut or stomach, and my pancreas was highly inflamed. I was in the worst agony in my life. I was so nauseous I just wanted to throw up my guts, I was in so much stomach and back pain that it felt like I was feeling it but I was numb like I was there but I wasn’t. I couldn’t comprehend anything. I couldn’t eat at all. If I had gotten there a hour later I might not be here. That was the scariest day of my entire life. But guess what that treatment worked better then we could have hoped and I’m doing much better! I know I didn’t go really into detail about everything in the first 6 months of the year but I just hate remembering all the crap I went through. ( excuse my language but that’s the only fitting word for this year.) The last 6 months of this year I have been healthy and I am able to do so many more things now! But I will be honest going through what I went through this year has taken a huge toll mentally and emotionally and even though these past few months I have been physically well mentally has been another story. I won’t go into what I have experienced mentally other then anxiety because it’s hard to talk about. I just wanted to be realistic to everyone who is reading this. The only true good months this year were November and December. November I went on the most magical make a wish trip and it changed my life completely. (Hopefully I will do posts about the trip later on.) And December we had Christmas and that is my favorite part of the year. I never thought it would be possible to be so excited for a year to end as much as I am now. But the only way I have gotten through this year is God and my family and friends and everyone reading this! I could go on for ages of how grateful I am and there’s no amount of words to ever describe all the love I’ve felt. With all of this said here’s to 2017 and good health!
** IT’S MITO AWARENESS WEEK!! It’s the 18th-24th Please raise awareness!**
I know I know…. It’s been 3 months since writing a post and a whole heck of a lot happened right after my last post and it’s really hard to talk about. So in my last post I was sharing about my billionth trip to the ER and 4 days after that I was hospitalized. To set the scene I was in severe back and stomach pain, had the feeling in my throat which is what I get when I’m in a Cyclic vomiting syndrome episode, and I was SEVERELY nauseous. The nausea got so bad I was crying and praying that I would throw up. I didn’t care what I threw up I just felt so dang crappy and wanted relief. I was hospitalized on a Monday and 3 days prior I was so sick I couldn’t eat and everything at that point was going through me. The 3 days before I was hospitalized my mom had to lay in my bed with me while I would try to take my meds and try to distract me with the TV because it hurt to breathe, to move, and I was so nauseous and had the feeling in my throat so bad. So the night before the hospitalization I couldn’t take one thing I tried for over 2 hours but I couldn’t and I was hysterically crying and even in my worst CVS episode (before this one) I was always able to force something in me. But this time I couldn’t. I was so sick I couldn’t lift my head off my pillow, I needed help walking to the bathroom right across the hallway, and I was breathing so shallowly in my sleep my mom was in my room until 3 am because she was terrified I wouldn’t make it. The next morning my mom woke me up and told me that my doctor’s wanted to administer a insulin drip. I am not diabetic so that is not why I got the insulin drip. (In my case it blocked my mitochondria forcing my mitochondria to remember what it’s supposed to do so it basically rebooted my system.) My mom said they got it worked out at the children’s hospital by us and the PICU guy said he would take us but we just had to be admitted through the ER. At this point I couldn’t think at all I couldn’t remember very much. I was so sick all I was concerned about was leaving my new TV because that was the only thought that made sense and that I could comprehend at that point. So my dad came home from work and took me to the hospital. I don’t remember that car ride at all. We got there and I think it was around the afternoon and I had no meds in my system for 12+ hours. That for anyone is bad but especially for me. My heart rate was in the 150s/160s range and my blood pressure was SUPER low and I was nauseous, exhausted, in the worst pain I have ever had in my entire life, and the feeling in my throat was SO SO bad. I really don’t remember that ER visit except the part where we waited 6 STINKING HOURS just to be told the metabolics team isn’t comfortable with this treatment and to them made no sense but they said they could admit me for fluids. You know the treatment is highly experimental I get not being comfortable but when it’s not even busy in the ER and I’m obviously VERY sick and it takes you 6 hours just to basically tell us no and say you could admit for fluids??!! Excuse me I had been on fluids since January you have eyes we told you do you not see me currently connected to TPN? Sorry just getting out some of my anger…..lol. Obviously my parents were furious and honestly I wouldn’t have blamed them for slapping the doctor’s face.
At this point we had NO idea what to do at all. Let’s just say my doctor was beyond angry. So at this point we only had 1 option that we didn’t know if it would work. My GI doctor had admitting privileges at a hospital but that has never done a treatment like this. So we decided to go to CHLA which is pretty far from our house but we had no other choice. My doctor said not to tell anyone in the ER we went to a different children hospital before because then it would be a huge mess. On the way there there was not one single bit of traffic at all. We didn’t stop once. That has never ever happened especially going through downtown LA.
I think I am now going to end this post. Please subscribe or check back to see my next post that will explain the rest of what has happened. This is really hard for me to talk and think about and I’m still trying to cope after this all so I cannot guarantee my next post will be explaining everything else. But please share my blog, youtube channel, and any info about mito because this week is mito awareness week!!
My oh my it’s been a while. Gastroparesis and dysmotility have progressed a lot. All I can tolerate right now is baked lays and bread. Anything else goes right through me so tpn is basically all my nutrition. Anyways onto the main point of this post. Last Thursday we went to the ER because I was in a lot of pain and I had pressure in my lower back right where my kidneys were. We got checked out and they did blood work and a x Ray with no results. If you want to know more about last weeks trip to the ER I made a Video about it: https://youtu.be/9Fj63iYV42ASo I went home still in pain. Well fast forward to today we are back in the ER. What a joy mito is! (note the sarcasm.) I’m still in pain but it’s a LOT worse and it’s at a 10 and if you don’t know me I have a pretty high pain tolerance. Last night I barely slept I kept waking up because I was in so much pain. I have complex regional pain syndrome so I’ve experienced my fair share of really horrible pain. But I have never woken up in the middle of the night yet alone repeatedly with pain. So we are in the ER to get things checked out. I am going to get a ultrasound to check my gallbladder to make sure that’s okay. So please pray we get answers!!
I wish I had amazing news to share with you all but that’s not the case. Last Thursday we went to the mito clinic where my pediatrician works. She was concerned about how much fluid I had in me and how swollen I was. ( I will insert a picture of my feet for a example at the end of this post.) Basically the fluid in me was not coming out the way it was supposed to. She was also concerned about nutrition. About a month ago I was told I had dysmotility which is the slowing down of the gut. Since I was diagnosed with that I barely have an appetite and I have to force myself to eat because I’m never hungry. I am luckily able to keep the food down but I have only been able to eat very light food that is easy to digest or else it literally passes through me within minutes. I have also been gaining weight even though I’m barely eating. What she thinks what has been going on is that my body isn’t absorbing the nutrition from my food. She told us she wanted to put us on TPN as soon as possible. We left knowing that we would most likely start it that Monday. My GI doctor was the one who prescribed it since it is my GI system that is all wacky. Well…., he likes to monitor his patients in the hospital when they start to make sure my body is okay with the TPN, because it can cause some issues.
So Monday we were directly admitted and that night we started TPN. My D10 fluids I have been getting was added to the TPN bag but it is at a higher sugar level. Yesterday me and my mom noticed my stomach was a lot flatter and the stretch marks I just got because I was so swollen and full of fluid were already starting to fade. Yesterday was the first day since January my face was not swollen at all! The right side of my face typically is swollen when I’m in a crisis just a symptom of hemiplegic migraines but it was my whole face that was swollen because of all the fluid. I am also able to now eat without getting nauseous!! Strangely after I eat I can feel my stomach digesting my food it’s so weird…. The hospital we are at is not the typical hospital we go to but this is my GI doctor’s hospital so it is a little farther away from my house but it’s not too terrible. I also have my own private hospital room which is such a luxury! Plus the whole pediatric ward is purple! Apparently the hospitalist who was on yesterday didn’t do what my GI doctor wanted him to do so I will update on that. They have therapy dogs here which really helps with my anxiety and they actually take Polaroid pictures of you with the dog and you get to keep them! We are hopefully leaving on Friday. My GI doctor wants to wean me down to at least getting 20 hours of TPN. Please pray we are able to do that and get home before Saturday which is my little brother’s birthday/party and I really want to be there! Oh and tonight we are going to try 2 hours with no fluids we’ll see how that goes please pray that goes good as well and if you could also pray for one of my mito friends who is in the hospital again.
So when we got here the waiting room was empty which was a huge blessing and we were taking straight back. We let the ER Doctor and nurse know what was going on and we were gonna get me a port. The ER Doctor well let’s say that X-ray came, the admit person came and nobody told they were coming. So we got admitted and into a room and we have the best roomate ever she is awesome! So the next day which was yesterday we had planned to have the port placed. Which after the surgeon heard my fluids are 24/7 he said a broviac is more stable to have then a port as you don’t access a broviac with a needle. It is a surgery since they do put it in your chest. The rule is you can’t eat anything for 8 hours before the surgery for safety reasons. We had a major miscommunication and we were told the wrong time to stop having food so long story short I got it done first thing this morning. So basically the whole time I had to fast I was asleep which made it way easier. My genetic Doctor ordered IV fluids with added protein, electrolytes, and amino acids I believe. Just to make sure I wouldn’t crash in the middle of surgery because it can still happen even under anesthesia. So as you probably expected I have had really bad anxiety the past few days or so it hasn’t been very fun. So I was woken up at 5:30 and put on a hospital gown and was pushed down there in my hospital bed. My dad walked the whole way until we went into the OR. The last thing I remembered was breathing in a breathing mask which was to keep my airways clear and I was having a anxiety attack at the same time and then the anesthesiologist started giving me anesthesia through my line and the next thing I remember I was awake. The nurse said I had woke. Up a little before and asked if feeling my head heavy was normal and she said I went back to sleep. I don’t remember saying that lol. I finally woke up and my dad was brought in and we went back down to the room. We are supposed to be getting discharged between 2 and 3!! My arm/shoulder hurts but it’s just the sore type of pain. Earlier it was some of the worst pain I’ve ever had it felt like I was being stabbed. I took morphine so that helped but I started to be really really sweaty and my stomach kinda felt off. But as soon as time progressed those things subsided. The last procedure we are doing is taking out the PICC!!!! Please continue to pray for my Health and please pray for my mito friend Kylee who is having a harder time at the hospital…
Quick update. My picc line came out a little bit more but we thought it would be fine but we called the picc team and they said to come in and get it removed as it is out of place and at a high risk for blood clots. So long story short we are going to the ER and getting a port or central line in my chest. Please pray as I will have to go to the operating room and go under. Also pray the hospital moves along really fast and everything goes okay.. I will keep you updated:(