Sunday, January 26, 2014

Saturday Six 1/25/14 on Sunday

1. Medical stuff:
     This week was supposed to be full of medical hoopla but because of the snow it was a really light week.
     ~Monday: Last day of in clinic Physical Therapy for my muscle weakness. I got discharged to do            home therapy because it wasn't benefiting me or the therapist to be at the clinic. Yay!
      ~Wednesday: I had an adjustment with my chiropractor followed by a much needed massage. I do massages for my chronic pain and muscle tension, not pleasure. They actually make me hurt for a couple of days after but then I get about a week of almost pain free days, so it's worth it. 
       ~Thursday: Saline infusion!!! 

2. Sunday I got to go to the Indiana UMDF Night at the Museum at the Indianapolis Children's Museum. It was so awesome! For one night the UMDF rents out a couple of the exhibits and lets mito families come and play where there aren't other kids there to possibly get them sick from the lower immune systems or make them feel different. It was so cool because almost everyone there had a feeding backpack and if they didn't they understood why they had one. And when a feeding pump went off it was just like a cell phone going off and no one stared at you, it was completely normal. There were wheelchairs everywhere and it wasn't weird when someone got up from one and played because everyone knew they were in them primarily to conserve energy not because they couldn't walk completely. I got to meet people I had been talking to on Facebook which was super nice. I can't wait to go back next year. 

3. There really isn't much going on in my life right now I feel rather boring. I've started to get more cognizant of the fact that I can't get out and do things anymore and that no one should have to live this way. Passing the time is getting harder and harder because I'm getting tired of watching the same TV shows over and over, but I don't have the energy to do anything but watch TV, I usually am not even awake for most of the time. But I'm even getting bored of sleeping. It's getting harder for me to even get the energy to get out for my daily coffee run. And I'm supposed to be going back to in class school full time in the fall. Ha. 

4. I did do something really, really, really super exciting this week! I booked plane tickets to go 'home' to NC! Where I lived on my own before I became ill and had to move home with my mom. This will be the first time that I will get to go 'home' in almost 2 years and I so cannot wait to go back and see my 'family' down there. I so cannot wait until it's time for the trip! 

5. My blog got nominated for an award this week. I guess that is pretty cool. Just a little more awarenesss spread hopefully. That's my aim.

6. I joined the Doctor Who fan world yesterday. I'm already obsessed. I watched 5 episodes yesterday and I'm planning on finishing season 1 by tomorrow and starting season 2 because someone told me season 2 was better than season 1. I swore I would never watch Doctor Who. Look what's happened to me. I'm also typing out Doctor because I learned yesterday that you are never, ever supposed to abbreviate Doctor. 


Thursday, January 23, 2014

The Liebster Award

Chronic Mom nominated me for the Liebster award this week! The Liebster award was created to recognize and/or discover new bloggers and welcome them to the blogosphere.  I'm not exactly new to blogging, and neither are the people that I nominated. I also can't exactly tell if they have less than 200 followers (which is one of the requirements) but we're going to go with it since they are awesome blogs. So let's just say that these are awesome blogs that I'm recognizing as being sort of "unsung heroes" of blogging because that is what mine was described as when I was nominated, by the way, thanks for that Chronic Mom. :)

Once you receive the award you pay it forward to other blogs of your choosing and then pay it forward from there etc.  It's kind of like a chain letter but less annoying since you get exposed to other blogs and other people get exposed to yours. The nominator asks ten questions of the nominees and here's the questions Chronic Mom asked of me:

1. Why did you start blogging?
     I honestly started blogging when I was bored in the hospital after I almost died from a colitis flare and my potassium crashed and I had just lost my job and I was scared, alone, and didn't know what to do with my life. Everything was up in the air. I thought no one would read it but my mom. Through the years it has transformed in what it means to me and to my readers. Now I blog to bring awareness to the many chronic illnesses that I have and also bring some inspiration, hope, and positivity to those living with or without chronic illnesses. Maybe a little funny too. I hope I do that. That's my goal at least.

2. What is your favorite quote?
     This is a toughy. I have so many favorite quotes. I think that I will go for a Bible verse because so much of what gets me through my illness with positivity (most of the time). My key word is usually hope. So I will go with: "She holds onto hope for He is forever faithful." Based off of 1 Corinthians 1:9

3. What is your favorite book?
      I love to read. I don't think I could pick a single favorite book. I have loved every book I read by Jodi Picoult. I am currently reading One Thousand Gifts and love that book too. I read a lot of textbooks. I think if I had to pick one favorite book ever it might be To Kill a Mockingbird just because it was the first book I "got" as a kid that was more mature. The first book I actually read for class that I finally understood and could contribute to the class discussion about in a real, intellectual fashion. I have reading comprehension issues because of my illnesses but I love reading for fun. 

4. What is something you have learned recently?
      "Charis. Grace. Eucharisteo. Thanksgiving. Chara. Joy. A triplet of stars, a constellation in the black. A threefold cord that might hold a life? Offer a way up into the fullest life? Grace. Thanksgiving. Joy. Eucharisteo. A Greek word...that might make meaning of everything?" "Thanksgiving always precedes the miracle" One Thousand Gifts

5. What is your biggest pet peeve?
     Unsolicited advice. I do not need a lecture. Advice. Etc. Even if you do have the same thing as me and think you're helping. If I didn't ask for help, I don't want it. If I'm answering someone else's question don't respond to my answer by trying to fix me. I didn't ask for help, I was helping someone else. If I ask for your advice, I will gladly accept it and any reprecussions for asking for your advice, but until I do ask, don't offer it. I pay doctors good money to give me advice about my health and value their opinion. Thank you. 

6. What are three random facts about yourself?
     I play bassoon but it is hard with my tube because of the abdominal pain because of the air pressure.
     Sometimes I have no idea how I'm going to be "sick" for the rest of my life because being sick at home all day is incredibly boring and horrible. Then I get comments like your so lucky to stay home all day and about lose it. I just wish I could do normal things. No one understands.
      My dog owns me and she knows it. 

7. What song are you addicted to at the moment?
       "I Shall Not Want" by Audrey Assad"

8. What is your most cherished memory?
       Probably winning state high jump in the Junior Olympics or anything that revolved around me being just a normal, happy, healthy person. Even something as little as being able to hang out with my family without worrying about what could go wrong with my body. 

9. What is the first thought that popped in your head this morning?
     Where am I? What time is it? Why hasn't mom gone to work yet? Because I thought it was like 10 o'clock. Then I wanted to know if it had snowed so I knew if the roads were bad enough for me to not go get coffee or not. 

10. If weight were a non issue, what one thing would you eat every day?
      Reesee's Peanut Butter Cups

The Liebster Award is a way to recognize worthy and inspirational blogs with under 200 followers. You can choose to view it as an annoying chain mail message, or a lovely recognition and pay it forward.  Some of these blogs I've been following for a while and some of them I've just been blog stalking, one I just started following this week, but they are all fantastic blogs about chronic illness that I've been reading lately.  

The blogs I nominate are:

The questions I want to ask of them are: 
1. Why did you start blogging?
2. What are your favorite hobbies?
3. If you could go anywhere in the world where would you go and why?
4. What is your favorite color and why?
5. Do you have any pets? 
6. What's your favorite way to pass the time in bed while you or your loved one is ill?
7. What is your favorite food?
8. Can you remember a recent dream you had? What was it about?
9. What is your favorite thing about yourself? 
10. What is your favorite quote?

Saturday, January 18, 2014

Saturday Six 1/18/14

I'm going to start doing the Saturday six every week so that if I don't update my blog for whatever reason (like I've been doing very bad at lately) you will at least get a weekly summary of how things are going in my world. The first point will always be that weeks medical appointment summary, then the other 5 facts will be random. Then there will be an inspirational quote at the end, just for fun. :)

So here's this weeks Saturday 6:

1: Medical stuff:

  • 1 day of PT worked on core, leg, and ankle strengthening stuff. Wore me out as usual.
  • 1 neurology appointment made some good headway on cutting out one med to crush that was crushed 3 times a day by replacing it with a 24 hour patch. The patch is causing lots of itching though. Added creatine to my mito cocktail to help with muscle weakness, it's not here yet, don't know if it will help yet.
  • Had to cancel my saline infusion because my energy level was just way too low and I didn't feel well so couldn't get there, plus it was snowing and I didn't want to drive in the snow...again.
2. School is back in almost the full swing of things. One of my classes is at least. The other one is trying to pretend it is, but it's just frustrating me because she's telling me we will have to do 2 research projects for that class and write a grant but not giving us any information in how to do it. The other class is a research project as well. Plus, I'm working on my thesis. So that's a whole lot of research for a normal kid, let alone a sick kid. So I need to have information so I can be planning appropriately. So far I've got 2 topics planned one for research, one for one of the 2 public health papers. The research class I'm doing a paper on the patient perspective of quality of life of living long term on home enteral nutrition (tube feeding) to educate dietitians about why it is a big deal. For the first public health paper I am doing nutrition prevention and intervention strategies for osteoporosis. 

3. My car wouldn't start on Sunday and I had already had plans to get the back window fixed on it Tuesday. By the time all was said and done it cost me $630 bucks to get it out this week and they found $155 more wrong with it that I have to wait to fix until I get some more money. Talk about a hit to the pocketbook. I'm glad that it is a good car and that I don't have payments on it.

4. The weather is really starting to affect me I think. And I'm really, really, really tired of snow. Snow causes me panic attacks and I can't keep driving in it. I can't keep cancelling my appointments because of the snow, but my body gives out when I drive in it. The snow needs to go away now.

5. On that note, I really don't know what's wrong with me but I am having a really hard time staying awake lately. Little tasks are becoming very hard for me to do. My muscle weakness is getting a lot worse. My fatigue is getting a lot worse. My cognitive abilities are getting a lot worse. My dysautonomia symptoms are getting a lot worse. Nothing is really getting better and it's kind of starting to worry me. But not enough to freak out. Yet. 

6. Carolina graduated from the first level of her dog training classes this past Sunday. Only 2 more levels to go before she is one highly trained dog! I'm so stoked for her.

Monday, January 6, 2014

"This is the One That Has Abnormalities"

I've been noticeably a little off since I was 16 years old. After talking to my geneticist the first time I know that I've been a little off since birth and just didn't know it. I've been really, really off for the past 3 or 4 years now. Since that time I almost died. Since that time I lost my job and landed in the hospital for 13 days. I have gone downhill fast since then.

A lot of the diseases I have can be triggered by a traumatic event. That was definitely a traumatic time in my life. Really traumatic.

Anyway. Compared to most people's mitochondrial disease diagnoses mine was super quick. I had never really heard of mito until around June or July of this year. One of my friends is a strong probable for having it and sort of started hinting that I might have it based on similar symptoms that we had. Then I went and saw my GI doc in June (who I hated) but he had a fellow with him that day who noticed my extremely low muscle tone, my eye weakness, my inability to eat without staying awake (which was the reason I was back at said GI for the 6th month in a row with nothing being done) and the fellow goes, "have you been tested for mitochondrial disorders?" I say no, but I had recently started hearing about it. He tells my GI and my GI of course immediately thinks it's his brilliant idea and begins the process of setting me up with a geneticist. I find out in July I got an appointment with said geneticist at the end of December (Dec. 30 to be exact). And so I waited. And waited. Then I got real sick, real fast.

I started getting so sick so fast in fact that I was admitted to the hospital for a week to do the mitochondrial disease testing panels in September instead of starting in December like originally planned because we couldn't wait any longer. But the tests take forever to come back. So we did my blood tests (like 17 vials of blood), 2 urine tests, a stomach muscle biopsy, small intestine biopsy, and thigh muscle biopsy, and I waited.

I was given a feeding tube because my stomach was not working at all anymore and we did a trial feeding tube and it was found out that I don't fall asleep with the feeding tube which was another big clue leading them to believe I would have mito. Because of that I was started on a baby dose of the mito cocktail with just carnitine and a small dose of coQ10 daily. Then I waited some more.

The tests took 8-12 weeks to come back, so my original first appointment of Dec. 30 was perfect for a follow up appointment to go over test results. When I got there he let me express my concerns about some symptoms I was having and then he got down to my biopsy results. The first 5 he handed me were completely normal. Then he handed me two different ones and he said "these are the ones that have abnormalities." I said, "finally," and laughed. I was so happy to finally have something wrong that I wasn't quite comprehending yet what was wrong or what it meant.

My thigh muscle biopsy showed that I had complex I, III, and IV defects and that my ATP can't convert fast enough based on the oxygen in my skin (or something like that). Basically, there is a whole lot going on with my mitochondria that isn't good. My basic understanding of a mitochondrial disorder is that we do not convert energy in the way that typical people do and it's like trying to run an entire house of electricity with one triple A battery. It just doesn't work out. So this is why I get so tired all the time, and my body just doesn't like to do things right, and my muscles just quit working whenever they want to. My geneticist said my biggest problem at this point is muscle myopathy, or really, really bad muscle weakness. But it's not like regular muscle weakness, it's like I can't read and lose vision sometimes because my eye muscles are too weak, or I can't stand up sometimes because my leg muscles are too weak, or my ankles can't support the weight of my body anymore because the muscles aren't there, or my stomach muscles are obviously too weak to digest my food. Really bad muscle weakness. And it's progressive. And your heart's a muscle. So there's that.

Right now we are doing everything we can to prevent and delay progression as long as we can. And we upped my mito cocktail to double the coQ10 because we found it really helps with my energy. We also added riboflavin to my cocktail to help with pain and we have found that to be really helpful as well. I'm watching and monitoring what is going on with my tube feed diet because even though I'm only getting 800 calories a day on my tube feed a day I'm gaining weight. But when you have a disease where you don't use your energy properly weird things will happen. Right now I'm just still kind of soaking it all in and learning as much as I can about what it is and what it means and where it will go. And learning that it doesn't matter what the test results say, I am who I am, and it's just another test result, it's just another diagnosis. God gave it to me for a reason. I've just gotta find that reason and be thankful for it. 

Thursday, January 2, 2014

Drumroll Please! Giveaway Time!

This here blog has hit well over 5,000 views and had 101 posts now and I think that deserves some celebration, don't ya think? Plus it's a new year so that's always a good time for a give away too!!! 

So here's the deal-i-o!!! 

I've never done a give away before and may never do one again, so get in while the getting's good!

There are several different ways to enter:

1) You may comment on this blog post with your name and email address.
2) You may comment on the Facebook post I share with your name and private message me your email address.
3) You may get an 2nd entry if you also like the post where this blog post is shared.
4) You may get a 3rd entry if you share my Healing Hopefully Facebook page on your Facebook page and ask people to join the page via this blog posting so I know it's been shared. (I need a record, if you just share the page I don't know that so share this post specifically, but ask people to follow me please!)
***Only comment to either the blog or the Facebook page not both! The extra entries are only for liking and sharing! 

So what are you getting you may ask? 

My undying love and attention...well that and...a $15 Amazon gift card to spend however you want, sent to your email!!!! I would want that give away, wouldn't you! 

So comment, like, share, do whatever you like but remember the more entries you have the greater your odds are. So I would enter all 3 ways! 

The giveaway will end when my Healing Hopefully Facebook page gets to at least 200 likes or on Wednesday January 8, 2014! So share, share, share! That's only 129 people away, you can do it! I know you can

**Disclaimer: This giveaway is being done of my own volition no one is sponsoring it. I am supporting the gift myself and am in no way associated with Amazon or it's affiliates.

Wednesday, January 1, 2014

A New Year and My 100th Post!

It's kind of fitting that my 100th blog entry is on a brand new year. A brand new day. It almost feels like a brand new life.

I've been doing a lot of soul searching lately. A lot of contemplating on what life is. What life isn't. What life should be. What I should be making of my life. From bed. What kind of purpose I still have when there is so much I can't do.

Then I realized I was spending so much time focusing on what I can't do that I was spending no time focusing on what I still can do. There are several reasons that I got to that place. And I think I've eliminated most of them. Or I'm trying to one by one. But the point is that when your environment gets toxic so do your thoughts and your mind and your whole being becomes toxic and everything becomes negative and I've never been one for negativity. It eats at your soul and I don't need anything else eating at any other part of me right now. So I'm choosing joy this year.

And you can't stop me.

I've turned off the notifications to all the Facebook support groups where the same people go in and complain about the same small, itsy bitsy things every day (heck sometimes every hour) over and over and over again. They are still there in case I have a question, but I don't go in them if I don't need to. And no, I'm not talking about those of you with real concerns. I'm talking about the people we all know about that post their blood pressure every 30 seconds and don't take any advice but don't know why they aren't getting better. Or are posting that their arm hurts super bad but can type that out in a paragraph 13 times every day. Not the people that are legit needing support, that's what it's their for. Not the people that are trying to compete with each other for the who can be the sickest person in the group award. That is super annoying. Especially when those of us that probably are the sickest aren't even posting because we are too sick to post. Ironic, right?

Anyway. I've also created a separate Facebook page for my health issues from my main Facebook page to try to keep the "real me" separate from the "sick me". This is enabling me to kind of compartmentalize who I am. Identify that I have things that I still can do. Even if they are super small things like enjoy some quality TV time with my dog. Or a small outing to exchange Christmas gifts with a friend. Or going to get coffee. Or things like that. Nothing major for sure. Especially not now.

I'm also, on that note, learning to be thankful for all things (even the not so good things) and be mindful of God's grace. I'm reading Ann Voskamp's "One Thousand Gifts" and doing the devotional with a friend and using it as my sort of New Year's resolution thing. I'm not making a resolution because I don't ever keep those. But I am reading this book and doing the devotion and trying to make it my intention to follow through and make it a real part of my life and ingrained in me. The whole premise is that we have the choice to freely accept whatever God gives us and freely live with what He gives us. That way whenever anything happens it is something that we are thankful and joyful for. Because we weren't expecting it.

So when anything happens I'm going to choose to be thankful for it. I'm going to look for God's grace in it. I'm going to figure out a way to find joy in it. Even if it's another diagnosis. Which happened two days ago. But that's another blog post. For now it's a new year and I'm focusing on the promise of new life. The promise of hope. The promise that there is something beautiful yet to come.