Upon Reflection...

For the past 3 years my life has been in limbo. My life has been invasive test after invasive test. My life has been medication after medication. My life has been appointment after appointment. Result after result. Diagnosis after diagnosis. Infusion after infusion. Treatment of one kind of another after more treatment of one kind or the other.

My life has been suffering from more than one chronic illness. Figuring out how to not only just get out of bed with several chronic illnesses, but make something of my self with more than one severe, debilitating chronic illness. My life has been dragging myself to class when I can barely stand up and sitting there and paying attention as much as possible because I want to graduate with like a 3.75 or above, not just graduate. My life has been studying harder than anyone else because I have to deal with brain fog so I don't remember anything like most people do. My life has been suffering through clinical hours that are so hard for me to make it through because of the physical demands because I just know I want nothing more in my life to be a dietitian one day.

For the past 3 years, my life has been so uncertain. There have been so many times where I have been like why the hell-o am I doing this to myself? What am I trying to prove? Am I doing this because I want to be a dietitian and try to get off disability? Or, am I doing this because I want to prove to myself that my chronic illnesses have not taken everything away from me. For the past 3 months I've been in a very weird place because the class that I'm going to finish up with is not the class I started with and they don't know me or anything about my health conditions and I'm nervous with how they will react. I'm nervous because I will have a new professor who also knows nothing about my health conditions (and he's in charge of clinicals).

But, the real point of saying all this, is to say that in the past 1.5 weeks I have not felt more content with my life and where God has placed me and what He has planned out for me than I ever have been in my life, even though I did think that I was doing my "dream job" before. I am in my element right now. I participate in many Facebook support groups and can give well educated and informed answers to tough questions that some people may not know the science behind. So I'm helping people all the time already, even before I get my degree. I have just started my recruitment and data collection for my thesis and I already feel like I'm in my element with that. I feel like I'm (hopefully) going to be helping my participants find a protocol that works to relieve their fibromyalgia pain through diet instead of through all the meds that they are on in the future. I'm already studying for my fall classes. I am hanging out with some of the best people in the world. We are finally getting my treatments under control so I can at lest be productive a couple of hours a day. I am getting all kinds of things accomplished. I almost feel like *knock on wood* that my life is sort of kind of under control and that I'm slowly beginning to find my purpose again and actually feel like I'm fulfilling it (or starting to at least) and I'm loving every minute of it.

I am so happy that I finally feel like I'm where I belong in life again. Even in my "crazy, tragic, sometimes almost magic, awful, beautiful life." And for that I could not be more grateful.

I'm Coming Out...Cause I Gotta Get This Off My Chest

Most of you who know me really well, especially have interacted with me socially, will be like no duh, I knew that, or I figured it at least when I make this announcement.

I wasn't going to tell anyone minus the like 5 people I've told so far because I just figured it was something no one really needed to know and just gave more ammunition for people to say things about me and attack me and have an idea know of exactly how to do it.

But for the past 3 or 4 weeks, it seems like every conversation I have is getting misinterpreted and my friendships are in jeopardy because of this. So I'm coming clean so that hopefully you (and these you's probably won't even read this because they are mad at me) will hopefully be able to understand a little more and know that it's a real problem for me and how sorry I am that I can't control it and I don't want it to end our friendship.

So if you haven't guessed it by now...I am sort of, kind of, officially diagnosed with Asperger's Syndrome which is High Functioning Autism. Which is ironic because I worked with people with Autism for so long and I even used to joke with my co-workers that it was almost like my babies were rubbing off on me and I had Autism too.

But anyway, back in December when I got diagnosed with Mitochondrial Disease and we were going over some of the symptoms that I was having and he said it was almost like I was having "autistic tendencies" but didn't diagnose me with Autism. So then I went and talked to my counselor about it and she gave me an "aspergers quiz" and I got 173/200 Asperger's points and 40/200 neurotypical points. Which means that I'm way more on the Asperger's side than the neurotypical side.

The test was broken down into subsections. 

The first category contains intellectually related asperger's traits such as having strong interests, hyper focusing, good long term memory related to interests, figuring out how things work, etc. My score for this section was  14/14 Aspergers 0/14 Neurotypical

The next group was intellectually related neurotypical traits which would normally be hard for those with aspergers. Traits such as remembering verbal instructions, learning from others, summarizing events, keeping track of several conversations, etc. On this one I got 24/27 Aspergers and 5/23 Neurotypical. 

The next group was perception related asperger's traits such as sensitive senses (touch, glare, humidity, changes in air pressure, pain, afraid of fast moving streams, and so on. I got 26/26 Asperger's and 0/17 neurotypical on this section. 

The next section was neurotypical  motor abilities and perception traits such as judging distance, speed and acceleration, keeping track of positions of objects, concept of time, facial expressions, and timing in conversations. On this one I got 4/6 asperger's and 8/24 neurotypical. 

The next group contains communication related asperger's traits. These can include odd or unusual sounds in conversation, blinking or rolling of eyes, clenching fists, grinding teeth, tapping fingers, rocking, tapping eyes, fiddling with things, etc. On this section I got 28/36 asperger's and 9/35 neurotypical.

The next section contained nonverbal communication traits such as timing, reciprocity, turn-taking, etc. And then being unable to do these abilities leads to secondary problems of being unaware of missing or hidden agendas, being unaware of others intentions, misinterpreting figures of speech, idioms, and allegories, literal interpretation of inappropriate things, and seemingly poor empathy. On this section I got 21/22 asperger's and 1/26 neurotypical. 

The next group contains neurotypical traits for making connections to people including making contact with people in groups, showing and describing feelings, approaching potential partners, and cooperating with others. My score with this is 27/28 aspergers and 1/17 neurotypical 

The next section contain typical asperger's social traits including having trouble with authority, arguing, revenge, and a general tendency to put yourself in the center of attention. On this section I got 14/21 asperger's and 5/10 neurotypical. 

The next section contains neurotypical social traits that focus on socializing and getting along well with strangers. On that section I got 0/0 asperger's points and 12/29 neurotypical points. 

The next section was on asperger's attachment traits which is the norm for most with asperger's, they like to form few, strong relationships. I got 9/10 on that section for asperger's and 1/5 for neurotypical.

The last section contains neurotypical attachment traits which are intimate in nature and aim at creating and maintaining relationships with sex. I got 0/2 asperger's and 2/6 neurotypical on that section.

So what does all this mean really? Well if you go back and look through my scores. The places that I really struggle with are communication and building relationships. And I really struggle with those in person. So imagine how much harder it is for me to be continually building relationships with people online where I already have difficulty building relationships because I take things literally, and don't interpret sarcasm well, and have trust issues with people, and don't know how to start new conversations, and get defensive instead of trying to understand because of my disorder...and then don't even have any voice inflection to go off of. 

My mom always feels bad leaving me home alone in my recliner all the time, but seriously, I crave it. I would love to just be able to sit in my recliner alone all day every day alone all the time. Because I don't have to try to make the relationships work from there. 

I love having friends, and love everyone on my friend's list and deeply and sincerely hope that it works out with everyone but you have to understand that sometimes my asperger's gets in the way and makes me over-react to a situation and I can't help that. I don't get mad at you because your mito, or dysautonomia, or fibromyalgia, or colitis, or endometriosis, or PTSD, or Bi-Polar, or Depression, or brain tumor, is making you have a bad day. It's something that I can't control, it's just how I'm wired. 

I can't stand to be touched, I really don't like hugs, but I sometimes will let people hug me just because it's the polite thing to do. I try my best to participate in group conversations but it's honestly the hardest thing to do on the face of the planet for me. I can't look at you in the eye, it almost makes me pass out. But Asperger's did give me one great thing. I'm freaking smart. Like really freaking smart. And I'm pretty sure that's thanks to the Asperger's, cause that is a trait of it too. 

So, all in all, I'm writing this not for you. But for me. I don't want it to be a secret anymore. I want to be proud of who I am. And if it helps you understand the way that my mind works a little better as a result well, heck ya, that's awesome too. I hope it does. Because I never mean to hurt my friends. It's just my stupid Asperger's acting up.  And I apologize for it. Because I do love you. No matter what Asperger's makes me say. 

Support Groups?

Because most of the people that have these chronic, debilitating illnesses I have, there are tons of Facebook support groups out there that claim to be offering support and advice for things you may be going through with your illness. I'm in support groups for Ehlers-Danlos Syndrome, Dysautonomia, and Mitochondrial Disease. Day or night there are depending on the group hundreds or thousands of people right there, at your finger tips, ready and waiting to offer their listening ears and supportive words of encouragement to help get you out of what ever dark place you may be in at the time.

Or are they?

Lately, it seems like in certain support groups you can't post any question without getting jumped all over, and you can't answer a question because you'll get jumped all over (even though you are just trying to help).

Don't get me wrong, there are several of the people that I have met in the support groups that I know will be my friends for life. Because who wouldn't want someone that can understand everything they're going through and be able to relate and not judge you at all. It's so rewarding to have made some of these friendships and almost makes being sick worth it because I never would have met some of these people that are now constants in my life. But, really, if I had my choice, I would still choose to not be sick. But I'm so glad I've met positive supportive people that are truly there to help me get through the crazy and bad days.

But when  you don't even want to go into the support groups anymore because they are so negative and depressing that they physically make you sick, then you are not getting support and you are not able to offer support to others either. Not all the groups are like this, 1 or 2 of the groups I'm in are super awesome. But for the most part, it's people posting negative things about their lives (like I can't go on any longer, I'm the sickest person on the face of the planet, etc), posting their vitals multiple times a day, or other people commenting on people's pleas for help with horror stories that they have heard happen, that are super rare, and it ends up scarring the original poster out of doing whatever procedure his/hers procedure was in the first place. It's just not a good environment. And I noticed a positive correlation to my not spending as much time in groups, to feeling physically healthier. Not kidding. It's like the groups sucked the energy and wellness out of me and made me physically ill. 

Perhaps the most frustrating part of being in these support groups is that everyone is always trying to be sicker than everyone else. If someone posts they have this, this, and this with that, that, and that symptom. Then the next person has double that, and the next person has three times that. When I'm reading all of this that is going down, I'm just sitting over here in my bedroom wondering why anyone would *want* to be the sickest person. Aren't we all striving to be well? Or did I miss that memo? 

Another frustrating thing is when someone asks a question and you give advice and they don't take it at all and keep making excuses as to why that won't work or why they don't want to go to the ER right now. A good rule of thumb to think about is if you have to ask if you should go to the ER, you should probably skip the asking of Facebook and just go ahead and go to the ER. And for goodness sakes if you are asking for advice, don't deny every single piece of advice that we offer you, because that is really annoying, it takes energy to answer your posts. Something most of us don't have. 

Even though there are some bad experiences I've had with some support groups. I've had mainly positive experiences. I've been able to meet several people in person from the Indiana mito group and that's been a wonderful experience. I've also been able to develop deep personal relationships with some out of state people. Unfortunately, the bad experiences seem to stick out in my head easier because of the nature of them and the emotional sting. But if we could all just learn to get along. And not bicker and second guess each other's advice and respect that we are all sick and going through it then the groups would run much more smooth, in my opinion. The important thing to remember that the support groups, no matter how much drama they may cause, show us that we aren't the only person suffering from these stupid illnesses. And sometimes, that's all you need. 

Save Me...

These are not my words. They are written by one of my favorite music artists. I just can't get them out of my head lately and they resonate with me and my situation so much lately so I thought they may be helpful to some of you as well. So thank you JJ Heller for being such a wordsmith and music magician. If you've never heard her stuff you should pop over to her page and check her out. She is awesome and I've met her in person and she is so sweet! Many of her songs could be related to the struggle with chronic illness. But like I said this one is really resonating with me right now. So here it is: 

"LivingAm I really livingOr am I just existingHiding away 

Danger The world is full of dangerBut if I never try to go outsideMy heart will waste away
Come and save me 

You’re the only source of all the peace I need Come and save me 

You tell me life will not be pain freeWhat will be will always be in your controlDarkness is light to you And all you ask me to doIs trust what you say is true  

You are strongerThan any terrible possible scenario todayCome and save meYou’re the only source of all the peace I need Come and save me 

Save me …"

~~JJ Heller's "Save Me" 

It's a Beautiful Day to Save Lives

If you know me, and I mean, really know me. You know that Grey's Anatomy is my favorite TV show by far.

And if Grey's Anatomy is in your repertoire at all, you will recognize the title of my blog right off the bat.

"It's a beautiful day to save lives," is what Derek Shepherd says right before he begins any of his brain surgeries on anyone.

I just love that about him and think it's such an awesome quote. That after all the years he's been practicing and doing awesome surgeries he still has to say that and recognize that he is in fact saving a life.

I feel like WHEN (not IF, but WHEN) I'm a dietitian in some capacity I want to have that same mentality. Though I won't be doing brain surgery I will still have people's health and well-being in my hands, especially if by some grace of God get healthy enough to do clinical dietetics which is my passion.

I love this quote so much so that I got the t-shirt for Christmas and wear it ALL the time.

I've been struggling a lot lately with my health progressing faster and faster than we all thought it would that I am scared I will never get the chance to work even part time and get to help make a difference and "save lives" of my clients.

But Meredith Grey said it best:

So based of the advice of Meredith Grey, I'm going to keep going for it. Keep trying to get through school and keep trying my hardest to get as healthy as I can so I can at least work part time. This is my dream. Number 1 on my bucket list. I will successfully graduate from the program. I will be RD eligible. I will help kids with feeding tubes understand their bodies more because that is my dream. I am scared because I still have something to lose. I still have the ability to lose my place in the program, to not successfully complete my internship, etc, etc. I have plenty to lose, so that must be why I'm scared.

But then Meredith Grey sums it up very well again:

This is why I haven't given up yet. Because it's something that means so much to me. And in 10 years, if I gave up, I could look back on the situation and been like it would just be a little extra work, why did you quit. Why didn't you give it your all? Even with all the problems I've had I still have a 3.75 GPA. I mean I've got a higher GPA than most people without the odds stacked against them. I've got this. 

I also like what Alex Karev says, here: 

I honestly don't think I would be so much of a fighter and an overcomer if it weren't for all the stuff I have been through. I think my trials have made me a better person. Have made me smarter. Have made me tougher. Have made me more empathetic to my patients. My trauma has definitely given me scars, but it has definitely given me hope too. My trauma has made me into who I am today and has taught me perseverance and ambition. 

I think today is a beautiful day to save lives. I think every day is a beautiful day to save lives.

I am helping people in support groups. I am bringing awareness to people I come into contact with on a daily basis. I am inspiring people. I am making my diseases known about. I know that one day I will be able to save lives. I know that I can save lives. I know that I am saving lives even now. And why wouldn't I be? Because, after all, it is a beautiful day to save lives. 

The Day After...aka Life Goes On

Yesterday, I found out some disheartening news from my pulmonologist Nurse Practioner.

I learned that the muscles in my lungs were weakening and would probably progressively do so for the rest of my life until the point where they just won't work properly anymore and that means I can't breathe, and we all know what happens when you can't breathe.

Well, now I've had a day to process. A day to think. A day to get my head back on my shoulders.

And you know what I remembered? Life goes on. It doesn't stop 'til your dead and that will hopefully be a long while from now, even with my lung issues.

So, basically, I went to counseling today. Talked about it, got it all out in the open. Vented about it. And now I'm choosing to live. I may even choose to do those other tests but my counselor said she could understand why I wouldn't want to do them.

So here are some inspirational quotes that I just found that really resonated with me today. And helped me remember that life does go on, and it does get better than this.

I just need to spend a little more time focusing on the fact that shit happens, but life goes on and less time on the shit that's happening.

I really think the picture that says "she is standing on a line between giving up and seeing how much more she can take" is where I was yesterday. I had crossed the line into I couldn't take anymore. But today I'm teetering a little more on the being able to take a little more side.

My favorite quote from above is the one that says "Be brave enough to hold onto the hope that life will be beautiful again." If you go back to the early days of the blog I always talked about finding the beauty in the situation. Actually, it's been a pretty constant theme in my chronic illness journey. As well as hope has been. I can't wait until I get to the place where I will feel like life is beautiful again. Although, I think most parts of life are beautiful, but it should be that I think all parts of life are beautiful. Including, my illnesses. After all, "if you are never broken, you will never be made whole." (JJ Heller) And who doesn't want to be made whole.

Just Breathe

This blog update is for those of you that saw and were concerned about my Facebook status today. If you didn't see my Facebook status today because you find me by some other way, here it is:

"I have had a day involving my health that involves the rest of day revolving around me sitting in my recliner, all day, relaxing, watching TV, trying to avoid any and all thought about doctors, invasive test after invasive test, non working body parts, repeated lab work, waiting in doctors offices and procedure rooms, taking drug after drug for it not even to help and maybe even make it worse, and the inevitable that mito will completely shut my body down sooner than later. (Or sooner than I had hoped, at least).

At least the drugs numb the physical and emotional pain some.

Sorry, just a REALLY bad doctors appointment this morning and I'm so over it all. I can't be strong and positive all the time."

So for those of you who give a flying flip about why an usually positive, kick chronic illness in the butt, advocating, overcoming, warrior like me would make a status like this. It's plain and simple.

I'm so tired of having invasive test after invasive tests, blood draw after blood draw, doctors appointment after doctors appointment to basically just be told my mito is progressing and the time that it will overcome my body is getting closer and closer. Then add on all the other chronic diseases I have and I just don't have the energy to fight it off as well as some people.

So, as most of you know, I've been having A TON of trouble breathing lately. Waking up in the middle of the night choking, choking when I'm just sitting up conscious, getting winded holding a normal conversation with a person, walking  basically more than 25 feet, getting short of breath even turning over in bed sometimes.

Now remember I used to be an elite runner. And now I can't walk 25-50 feet without almost passing out because of not being able to breathe.

Anyway, I saw a pulmonologist about 4 weeks ago. He ordered an overnight post ox, a sleep study, and pulmonary function testing. They said my overnight post ox was borderline, I dipped into the 80s some but it would go right back up. The sleep study they said just showed "severe" snoring. They said that I snored like 578 times in the night time but there was nothing else wrong, even though that night I woke up choking twice during the test. I asked the nurse practitioner about it and she said well the sleep study wouldn't pick that up because I was awake when I was chocking. So I could do some overnight swallow study thing where I'd be kept awake all night and moved to see if I'm aspirating. But in my opinion, I already know I am and I'm already sleeping with my head elevated which is the treatment.

Then she said the pulmonary functioning tests showed that mu lungs could inflate to their full capacity but couldn't maintain it at all. She also said that it showed I could have an upper airway obstruction. She said I could get a broncoscopy to find out if I have an airway obstruction but even if I do they can't do anything to fix it they just know it's there. Then she said I should also go to an Ear, Nose, and Throat doctor to get my whole head area evaluated to check for obstructed airways and problem areas, which again is invasive tests with no real promise of any outcomes. Then, this is the bad part, she said honestly the doctor is just basically concluding that the muscles in my lungs are weakening. They determined this because I can take full breaths but can't hold it at all. I can't complete the tests that require fast breathing or changing levels of oxygen or nitrogen pressure. And he said that as I went through the tests I got progressively and significantly worse (which technically I should have gotten better half way through the tests because they gave me a breathing treatment) but I just kept getting worse and the doctor is pretty sure it was because my muscles were getting fatigued so it was harder.

So I, again, broke down in the pulmonologist office because the nurse practitioner basically said that my muscles in my lungs are going to keep getting weaker and weaker as my mitochondrial disease progresses until I won't be able to breathe on my own anymore, which will equal death, plain and simple. If you can't breathe, you can't live. I asked her about an inhaler or a nebulizer to help because most of my friends with mito are on these things. She said since my test showed no significant improvement after the breathing treatment the insurance wouldn't cover a nebulizer for me, and she doesn't think a rescue inhaler will do anything for me because it's a muscle problem for the most part and not a breathing problem, but if I wanted one for peace of mind she would call one in for me.

But anyway, I've basically decided (at least for right now) that I am done with invasive tests. I'm done with repeat lab work. I'm done with appointments every other day. Now that we know it's in my lungs I'm living my life as best I can. I am so tired of all this medical stuff, I need a hiatus. I will not be going to a Ear, Nose, and Throat doctor. I am going to try to get in with a different Pulmonologist that one of my friends with mito sees because he may have some ideas about the muscle weakness and suggestions of what to do, she says he is a really awesome doc.

But right now, lately, I've felt like my whole life has revolved around my diseases and I need it to stop. It's like in the song "Just Breathe," there is that line that says "life's like an hourglass glued to a table"

That's how I feel right now. My hour glass is glued to the table. There is no turning it over. And when the sand runs out. That's it. No more time left. And that's a scary place to be. Right now I just have to focus on living, and breathing, as well as I can that is.