Friday, September 22, 2017

Dirt Bag Mom.

I am a dirt bag mom. That is all I could hear over and over the whole way home. I could not wait until we got to our house so I could go into my room and sob. For real. How did I not see all this? Why was I so unaware of these challenges my kid was having? I feel like I pay close attention and am very engaged and involved on a daily basis, yet I didn’t really see what was going on. I didn’t get it.

It is hard to have a child with a chronic illness. There is just so much that comes with it. You always have to be “on”, aware, proactive, reactive, flexible, strong – the list goes on. It is quite a ride. Just when you think you have it down, something (or everything) changes, and you are back to figuring it out again. The situation around here used to be a lot more turbulent, a roller coaster ride for sure with us never knowing when something was going to hit requiring us to go back to the hospital with our daughter and what felt like constant upheaval for our family. Her body was in constant struggle, and we were working regularly with the doctors to to figure out how to get things more stable for her, changing up her medications, and regularly assessing her situation to confirm whether more serious underlying issues were emerging such as strokes. It was clear she was not doing well. You could tell by looking at her. It was painful as a parent, a very helpless place. But, it was something we became used to and knew how to function in. It was our normal and we got quite good at the crisis management and hospital protocol/preparation. I even had "hospital clothes" that were comfy and ready to go just in case.

Then, by the grace of God and with some key medication and treatment changes, things began to level out.  Hospital stays became fewer and fewer and we were able to move into a place of more stability at home. That is not to say our daughter was without challenges. With a chronic illness, rarely are you issue free. Often the victory is merely staying out of the hospital. I consider that a victory for sure. It is a gift to be able to manage the issues at home, to be able to stay home as a family. The downside of moving into this new season is that it, for me at least, was somewhat misleading. In the calm, I didn’t see what else was going on.

My daughter has shared many times that she wants people to understand, but she does not want to be treated differently or pitied. Often times, her classmates and friends forget she even has an illness. She looks like she is capable of doing the same things as them. She is mobile and does not require walking assistance. She “looks normal”.  She likes it that way, but is does come at a cost. When you look normal, people expect you to be able to function in the same way. YOU expect yourself to be able to function at the same level as others. The fact is; however, you can’t. 

Sometimes even I forget. That is so crazy to me. How could I forget? I have been dealing with the reality that my child has a chronic illness, mitochondrial disease, for years. I have read all about it, educated others, and advocated on behalf of my daughter and others with the condition. I know all about it and what can come with it, yet my eyes betray me just as her body betrays her.

I sat in these appointments with her and just felt sick. Not because the specialists were telling me there were issues, but because somehow I missed much of them. Not only did I miss the difficulties, but more importantly I missed her. I am her mom and I didn’t really see her and what she was experiencing. Dirt bag mom, that was me.

Evaluations by the specialists validated random things my daughter had been saying for a while and brought to light things she had kept quiet, either hiding or working hard to compensate for. She had struggled in silence not wanting to be different or less than. If she didn’t say anything, people wouldn’t know. She could hide it. The difficulties may seem like no big deal to some, but to her, at 14, they were everything. They were things that set her apart, made her feel vulnerable, and caused her to feel she could lose everything. The fact is she was already was losing things. Though she was bright, school was so much harder. She was now struggling to tie her own shoes, cut her food, and complete other tasks that involved fine motor skills. Her ability to visually track had decreased to that of someone half her age. Her coordination had decreased. Her ankles, wrists, knees and other joints were extremely lax which was why she often complained about them and had such a hard time recovering from a minor ankle injury a while back. She had increased spasticity, hypotonia and other muscle related issues. The list went on and on. And after it all, she and I sat through a surreal appointment where we got to listen to someone walk her through adaptive recommendations and tools that were deemed necessary to both support her and prevent some things from getting worse.

My daughter felt so many things– embarrassed, exposed, weak, scared.  “What if I lose everything mom? If I am already losing things, how do we stop from me losing more? Am I going to just keep on getting worse? Am I some day not going to be able to do anything?” My heart, her mama’s heart, just broke in half.

How do you even answer what you do not know? Because the truth is, I have no idea what is going to happen. I didn’t even really grasp where things currently were then. The reality is I still don’t know. No one does. It is each day at a time, working through the now, continuing to be thankful for the more stable medical situation while being mindful of the new found challenges. It is keeping the dialogue going so we are aware of how things are progressing, for the better or worse, and making sure she has the support she needs. It is about maintaining a safe space for her to communicate exactly how she feels and respecting the fact that while her mitochondrial disease affects us all, it is Her Story. It is about reminding her that no matter what her situation, what she loses or gains, what newfound challenges come her way, she is amazing, strong, beautiful, loving, worthy, and special. She is not her illness. And it is about trusting God along this journey for guidance, peace and wisdom.

This dirt bag mom knows that she needs to give herself some grace. I tell myself I can’t know all or be all in this or any situation.  I am just "a mom" doing the best I can with what I have where I am. I try to listen to myself. Some days it is easier than others.

Saturday, September 24, 2016

The ABCs of My Mito

This week has been Mitochondrial Disease Awareness Week. To close it out, Natalie and  I decided to share the ABCs of her "mito".  This list is not intended to include everything, but will give you an idea of her journey and experiences. She and I both know that, while she has daily challenges, there are many others whose "letters" include far more difficulties. We are inspired by all of the Mito Warriors and their families.  And now we present....

The ABCs of My Mito

Adapted School Schedule – I go to school from 9:30 to 12:30 every day, and sometimes stay for lunch. If we went back to a regular schedule, everything would snowball. Since I went to this schedule last year, I have had less severe episodes and symptoms. It means I don’t get to do electives right now, but it is what is best.   This A would now be "At Home Schooling". About 3 months after this blog was originally written, we had to make the decision to pull Natalie from traditional school due to the amount of issues she was having. We are by no means "issue free" but this decision has helped her tremendously. While she misses being at school, she feels it has been so much better for her body and we are able to keep things in balance for her most of the time.

Brain Fog – This is one of the biggest challenges I have right now.  It is so frustrating. I can feel like I go somewhere else for a minute and then come back. Sometimes it feels like everything is moving in slow motion. When it is bad, I also forget things from one second to the next, or have trouble keeping up with discussions or school stuff. It impacts me in volleyball especially on harder days.

Cocktail – Like many mito patients, I take something called the mito cocktail.  It is a bunch of pills and some liquids to help me with my symptoms. Mito cocktails are made up of vitamins and other supplements, and are especially figured out for each mito patient. My doctor makes adjustments to it as needed. It has made a huge difference for me with my symptoms.

My current daily mito cocktail includes 15 pills and 2 liquids in the morning and 8 pills and 1 liquid in the evening. That equals 8,395 pills per year plus the liquids each year for my mito cocktail alone. This does not include any of my other “as needed” medicines. Only one of the things in my mito cocktail is covered by insurance so we have to pay full price for the rest. One of my supplements is a special blend of creatine and other things that is especially designed for mito patients. We have to special order it each month.

Dysautonomia – Dysautonomia is a term that is used to described when your autonomic nervous system isn’t working right or malfunctions. Many of my problem are due to this. Your autonomic nervous system is the part of your nervous system that controls involuntary actions, such as the beating of your heart and the widening or narrowing of your blood vessels. It carries messages from your brain to all the different parts of your body. When I am sick, fatigued, or under extreme stress, my autonomic nervous system goes crazy and starts giving me all kinds of issues. I can also have problems sometimes for no apparent reason. For instance, I will get light headed, have heart palpitations or a very fast heart rate, get super flushed skin, shaky, shallow breathing, and/or numbness and tingling sensations. When I am getting sick, sometimes I will have these symptoms begin before I actually get the viral symptoms and last for longer than the actual virus.

Emergency Room Visits – I have been to the ER a lot of times, but we try to avoid it if we can because of all the germs. Usually I go for a smaller migraine treatment or to get IVs if I am sick. When I get the same viruses that my classmates get, I tend to get them worse and they also flare up my mito symptoms. Often times, I have to go and get IV fluids to help my body stay okay.

Fatigue – This is my biggest issue. It causes me the most difficulty in my days and if I do not get plenty of rest and make sure I don’t do too much. Fatigue will cause me to have much bigger problems that can lead to a “mito crash” or land me in the hospital.

Gastrointestinal Issues – I have had some different problems in this area. I have decreased motility which is worse when I am sick or have other problems. I also have acid reflux. Sometimes I also have swallowing issues. Last year my swallow was off for about 3 or 4 weeks and I had to have special tests done and have mostly liquids. Luckily, it got better and only gives me problems sometimes.  I have something called Cyclic Vomiting Syndrome which I will talk about when we get to the letter "V".

Heart rate irregularities – My heart is good, but I have heart rate issues often for no reason. I can be laying still or even asleep and my heart rate will become very rapid. Other times I have heart palpitations.

IVs – When I go the hospital, I get IVs for medicine and fluids and it helps me function better.  I have IVs too many times to count, but they really help me. When I have to get my migraine treatments, I have to get a special kind of IV called a PICC line because of the type of medicine.  This medicine can collapse my veins if it is in a normal IV line. That happened once. It was awful. The PICC line goes in my Bicep.

Joy despite my circumstances – I have had some really, really hard days and scary times, and there are a lot of things I wish I could do that I can’t. BUT I have a very good life and am blessed. Even on the hard days at home or when I am at the hospital, there is always something to be happy about. I have a great family, awesome dogs, and wonderful friends who accept me for who I am, and a great big God who is with me always.  Through everything, my mom and dad have always shown me that there is joy to found no matter what. We have had great times even during my hospital stays.

Ketotic Hypoglycemia – This was one of the first larger issues I had. I started having really low blood sugars in the morning when I would wake up.  I felt super shaky and my heart rate would be elevated to 150 beats per minute.  I even had some mild seizures. A doctor told me that it wasn’t diabetes, but it was pretty serious and I needed to eat a snack before bed so my blood sugar wouldn’t be so low. I also had to eat every few hours (and still do). It would be worse if I was sick or tired, too. My issue with my blood sugar caused me to be in the hospital many times. Now my blood sugar doesn’t usually drop, but I still have metabolic problems so we monitor the ketones another way.

Limited Exercise – Exercise is important when you have mito, but you have to be careful you do not do too much and cause your body problems. I have exercise intolerance issues which means my body really only can do so much without me having issues with my breathing or muscle fatigue.

Migraines – I have had migraines for several years now. My doctor told me that I get pretty much every type of migraine you can get, and of all his patients, I have the most kinds. I can have small migraines, migraines that last for days, and have even had one that lasted for two months. I also get what is called silent migraines where I just have aura but no pain. I get all kinds of aura – shapes, lines, zigzags, black, white, colors. I also get weird sensations with my migraines. Ocular migraines are scary for me because I don’t like it when I lose vision in my eye or lose my peripheral vision.  I was having a lot of “stroke-like” episodes for a while which are also very scary, but the L-Arginine I take has helped a lot with that.

Neurocognitive issues – In the second half of 6th grade, I started having a lot more trouble with my schoolwork and with my processing in general, which was even worse when I was fatigued. My mom and dad had me assessed and we found out that I had developed some issues with my working memory, fluid reasoning, attention, and processing speed. This is something that can happen with mitochondrial disease. The brain uses up to 20% of the body’s energy so when your body isn’t getting enough energy, the brain gets affected. My mom and dad worked with the school to help me. I am still very smart and get good grades. It just takes me a little longer some times and I need some accommodations and support. I also go to cognitive therapy.

Occupational Therapy – I went to an occupational therapist for an evaluation and we found out that I need occupational therapy to help me for many different areas including motor skills coordination, bilateral coordination, visual tracking, and to help with my muscle tone and weakness issues, especially in my hands and core.  I have been taking a break from occupational therapy for right now, but will be starting again soon.

Ptosis and Eye Fatigue –  I have eye fatigue issues because of weakness in my eye muscles. My eyes get very tired and sometimes it can be difficult to read even though I have good vision. If you look at me on certain days, the top eyelid of my right eye droops because of weak eye muscles. It happens more when I am fatigued or my body is having problems.

Quick Trips to San Francisco – I am a patient at the Muscular Dystrophy Clinic in San Francisco. My neurologist is part of that and so is my pulmonologist. I also see a cardiologist in San Francisco once per year and have a urologist there for problems I sometimes have. This is also where I have my overnight sleep studies. My parents and I do day trips to San Francisco for clinic appointments where I see a few of my San Francisco doctors all at once. They are about 3-4 hours long. UCSF Benioff is where I have to go when my migraines get out of control. I usually have to stay there for a 5-day special treatment. It is a hard treatment with lots of side effects, but it really helps.

Real Understanding Needed – I don’t like to be thought of as a person with mito. I like to be thought of as me and treated like everyone else. But…I also need people to understand that mito is real, and sometimes things are rough for me. I cannot do what everyone else can do, even though I try my best or want to. I don’t ever want anyone feeling sorry for me. I just want them to understand. The best friends I have are those that “get me”, who treat me like everyone else but also watch out for me and understand that I am going to have difficulties at times. Sometimes it is hard for me to keep up with everything going on, but I always try my best.

Sleep Apnea – I have to wear a BiPaP each night to sleep because I have obstructive and central sleep apnea. If I don’t wear my BiPap even for one night, I will have a load of symptoms the next day and will not functional well at all.

Temperature Intolerance – My body can’t regulate hot and cold temperatures very well. Heat is a huge issue for me. It makes me feel really light headed and depletes me. It causes all of my symptoms to flare. I have a cooling scarf I wear. In the summer, I have to adjust my activities because of the heat or I have a lot of problems.  The cold causes me to get really stiff and once I am cold I have trouble getting warm. I also have to ease into swimming pools and cannot just jump in all the way at first. If I do it causes what my doctor calls a “dysautonomic storm” and sends my whole body into a panic.

Ultra Sounds, EKGs, MRIs, EEGs, CT Scans – I have had a lot of these. The MRIs have been on my brain to check and make sure that the migraines, stroke-like episodes, and other problems I have had did not cause bigger problems. Last year we had to take my braces off to have one because I was having a lot of weird symptoms and problems, and the doctors wanted to make sure everything was still ok in there.

Vomiting and Nausea – When I was in 2nd grade, I started having cyclic episodes and horrible nausea all the time. It went away for a few years (from about 5th-7th grade) and would come sometimes with migraines, but this past year it came back for a while. I had problems with this every night for a week and just recently I have had three different really bad vomiting episodes in the middle of the night. I was not sick with a virus. It was one of my episodes because my body was having a hard time. Luckily, we   caught them early enough with medication, and I did not have to go to the hospital. I get nauseous with fatigue sometimes, too.  Since writing this, the cyclic vomiting episodes have continued, with Natalie having 1-2 a month. We have been lucky to catch many of them early as she knows the signs and have avoided having to go to the ER. The episodes are very distinct and similar to each other so we have gotten good at identifying them in the early stages and managing them. They are usually accompanied by extreme fatigue and other dysautonomic symptoms.

Weakness and Tingling – I get weakness and tingling in my arms and legs when I am more fatigued, sick, or in a migraine episode. Sometimes it is hard to walk. I also have weak muscles in my fingers, core, and legs. One area where muscle weakness has been a problem is at the base of my tongue. That is one reason why I have sleep apnea.

X-Rays – I have had abdominal, leg, and chest x-rays all for various reasons related to my symptoms.

Years to Diagnose – I have had issues since I was a baby but was not officially diagnosed until 3rd grade. Since many doctors don’t know enough about mito (and we didn’t know), they couldn’t figure out what was wrong. I went to all kinds of doctors before my mom found one who could help and told us about mitochondrial disease. I had to have a muscle biopsy where they took some of the muscle out of my leg and ran tests. I also had lots of bloodwork. We are still working on trying to find even more specific information about my mito so that we have a better understanding of what to expect in the future for me.

Zofran – Zofran is a God given gift from holy angels! It is something we always have and I take it for nausea and vomiting. It has kept me out of the hospital many times, and helps me a lot during migraines.