Friday, May 30, 2014

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.

Tuesday, May 20, 2014

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. 

Friday, May 16, 2014

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. 

Tuesday, May 13, 2014

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" 

Saturday, May 10, 2014

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. 

Friday, May 9, 2014

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.

Thursday, May 8, 2014

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.

Monday, May 5, 2014

So My Psychiatrist Fired Me Today...

So for those of you that don't know. I had a slight break down at a doctor's office about 1.5 months ago, after being told more invasive tests would be run on me and that my lungs were now likely involved in my mito and when it goes to your lungs it's a matter of when you die, not if you'll die.

So I had a break down. And I cried, and I was upset. So this doctor took it upon himself to look through several of my other medical records and saw that I cry at a lot of doctor's appointments and get overwhelmed. (Wouldn't you if you were always being given news of invasive tests, failed treatments, expensive medications, etc, etc, etc.?)

So anyway he sent me to a psychiatrist to get my "anxiety under control" because I probably wouldn't make it through my sleep study, so I would need one dose for the sleep study.

What ended up happening was I saw her, she was very uppity with me and asked me 3 questions and from those 3 questions she determined I was suffering from extreme generalized anxiety and severe depression and would need to be put on heavy duty medications immediately.

The first med I was tried on (Xanax) left me rendered useless for the 2 weeks I was on it, completely dead to the world). So I switched for the past 2 weeks to Valium and she was going to add an anti-depression med to the mix today when I got bad if I was handling the Valium well.

She also told me that I had to bring back the bottle of Xanax with me to my next appointment to prove to her that I wasn't taking the Valium and Xanax at the same time, but today she was like what am I supposed to do with that. I reminded her she told me to bring it last appointment, which made me feel like she didn't trust me, but I did it anyway. Then she handed it back to me and I'm like what am I supposed to do with this? I could have brought it to the medicine drop this past weekend, but you wanted to see it and didn't even care that I brought it back. Ugh.

Then things just kept getting stranger and stranger. The whole time I've been seeing her I've basically been saying over and over I don't think I have anxiety, I don't think I need to be here, this is a waste of my time, and on and on. She's refusing to see me on anything less than a every 2 week schedule and when you already have multiple doctors appointments that is a lot out of my schedule.

But today she asked me how the med was doing and I told her I was tolerating it better than the Xanax but I would still have breakthrough anxiety even though I was taking it as prescribed. There would still be things that got to me. (So I was finally admitting to her that I did have anxiety, which I hadn't done before). She starts raising her voice and saying things like "I don't have a magic pill" and "what do you expect out of me?"

While she's going on about that I ask her "also, while we are going over questions, just how long do I have to come every 2 weeks, because this process has never been described to me and it's taking a lot of time and energy out of my schedule to make this appointment every 2, my counselor doesn't even think I need to be on these drugs anyway and I've been seeing her for 2 years and she said she has never seen me so strung out as she has the past couple of weeks."

She starts getting really defensive and saying well you don't have to take these drugs, I'm not forcing them on you (lie, she was forcing them on me, she told me that i wouldn't respond to anything but high doses of benzos) and I said again I'm not asking to go off the drugs, I just told you I'm finally starting to tolerate them, I just want to know about the timeline of how often I'll be having to see you because it's exhausting to come in here every 2 weeks.

She then goes, you don't have to come in here ever again because I'm discharging you from my service. I'll make sure that you have a list of other psychiatrist's in town but you are doing nothing but being non-compliant with me, you aren't following instructions, aren't taking my advice, and spend the entire time I'm in here crying and screaming at me. I care about all my patients but you can't get help from me.

The whole time after this I'm telling her that she is not listening to me, I just wanted to know if I could come less than every 2 weeks. She said you would at least have to come once every month and I say that's fine, that is a big difference. And she goes, there is no difference between coming every 2 weeks and every 4 weeks. It's exactly the same why are you acting like it's a big difference? I tell her it is for me when I have so many doctors to balance appointments with.

Then she goes it doesn't matter anyway because I just discharged you from my service, so I won't be seeing you anymore. She gave me a list of other psychiatrists in town and 2 more weeks of my prescription. And left the room.

For as much as she was wanting me to admit that I had anxiety, when I finally did admit that the medicine was helping me she immediately discharged me and left me on my own to find a new doctor. And if I don't find one to see me within the next 2 weeks I will have to go off benzodiazapenes cold turkey and I've heard that is not pleasant.

I'm hoping I can get into the psychiatrist at school. But I am not sure. But it's like a switch flipped in her and she went crazy. Like she was literally screaming at me telling me that I wasn't listening to anything she had said and not doing anything to be compliant, but I showed up to all my appointments, brought my medicine bottle back, and have been taking my meds as prescribed. How much more compliant can you get?

Sunday, May 4, 2014

On Drugs...Oh I Mean Medications.

Growing up it was honestly my biggest fear that I would end up on drugs or medications for the rest of my life. It's not important why I have such strong convictions in this area for the purposes of this blog. Some of you know why I'm so strongly convicted this way and I would appreciate you not telling why.

And when I say my biggest fear I mean, I would rarely take Tylenol and when I started having to take Midol frequently for my horrible, horrible periods I really didn't like taking even that.

I do not like drugs at all. Not one bit. I swore that I would treat myself naturally for everything for the rest of my life and use the chiropractor, acupuncture, and Physical Therapy to fix anything that ever ailed me.

That was, of course, before all of my health stuff started happening and I was doomed for a lifetime of drugs, er, uh, medications for the rest of my life.

The Meriam-Webster Dictionary defines drugs as "an illegal and often harmful substance that people take for pleasure."

The Meriam-Webster Dictionary defines medication as "a substance used in treating or relieving pain."

I am VERY sensitive to what people say to me in terms of my medication use. I am VERY sensitive when people tell me that I am a drug addict when they find out that I am on long term narcotics and benzodiazepenes among other habit forming drugs. I am VERY sensitive when people get on my support page and tell me that I am taking too many "drugs" and that I'm a typical American that believes a pill will fix anything and that if I just ate whole foods I would be healthy again and not need to take any drugs. I'm sensitive there for 2 reasons. One, I never asked for a life filled with drugs. It is literally my worst nightmare to be on the amount of drugs and the kind of drugs I am. Secondly, I'm a dietetics graduate student graduating soon, don't you think I know the benefit of whole foods, ya know for the people who eat, since I can't eat and am tube fed it's just not that easy for me.

I'm also VERY, VERY sensitive to all these doctors that are prescribing me all these drugs and not looking at the whole picture and then making dumb ass comments to me down the road that don't even make sense and/or are not helpful comments for my situation. When you have all specialists and they don't communicate with each other it's impossible to figure out why drug x is affecting me in situation y.

Before I started taking any of these drugs I had been stable at 117 pounds for 6 or 7 years. Since I've been on drugs I have gone all the way up to 210 pounds. Then when I got my feeding tube in October I had dropped all the way down to 160 again and now I'm back up to 194 because since December I've gained 2-3 pounds every week. I've had 2 doctors, 3 nurses, and 2 dietitians working on this. But it doesn't stop all the other doctors from telling me that if I lost some weight my symptoms would go away. First, that's an outright lie, because all these symptoms that would "go away" if I was in a normal weight range again I had when I weighed 117 pounds, that's why I was put on these drugs in the first place.

I also have issues with fatigue. And they tell me again, if you can sleep for 8 hours a night and not take naps during the day all these symptoms will go away, and oh yeah, don't drive when you're tired...haha. I have an energy disorder I'm always tired. This is again crap, because again before I had the drugs I still had the same symptoms.

And now because I get upset sometimes at doctors offices I have been sent to a psychologist who has diagnosed me with anxiety and depression and I now need to be on drugs for both of those too. And I don't believe I have true anxiety and depression. Especially since  anxiety is a symptom of both dysautonomia and mitochondrial disease.

But friends, here is where it gets really interesting. Really interesting. I am currently on 22 medications either daily, weekly, every 5 weeks, or every 3 months. And the most interesting thing in the world is the side effects of these medications.

  • 5 of my 22 medications don't have side effects listed because they are supplements and 1 doesn't have side effects that match these categories listed (Saline, Riboflavin, Peppermint Oil, CoQ10, Creatine, and then Compazine doesn't have the side effects I'm discussing listed.) That leaves 16 medications to evaluate side effects for. 
  • 5 of my medications can cause rapid weight gain (Hydrocodone, Lyrica, Florinef, Baclofen, and Depo-Provera) This equals 31% of my medications causing weight gain.
  • 7 of my medications can cause anxiety (Hydrocodone, Valium, Potassium, Lyrica, Florinef, Mirapex, and Depo-Provera). This equals 44% of my medications causing Anxiety. 
  • 5 of my medications can cause depression (Hydrocodone, LevoCarnatine, Lyrica, Topamax, and Baclofen). This equals 31% of my medications causing depression. 
  • 10 of my medications cause fatigue/tiredness (Hydrocodone, Valium, Linzess, Vitamin D, Lyrica, Topamax, Buspar, Omeprazole, Nadolol, and Remicade). This means 63% of my medications cause fatigue/tiredness. 
  • In addition to all this wonderful data most of the medications also have side effects that match up with my every day symptoms of the chronic conditions I have such as: dizziness, fast heartbeat, joint/muscle pain and weakness, red irritated eyes, loss of balance, confusion, shortness of breath, problems with memory, tingling of hands and feet, general feeling of discomfort or illness, pain, slurred speech, trouble sleeping, twitching, blurred vision, slowing of mental/physical activity, memory problems, difficulty concentrating, and breathing problems. So if these side effects of the medications I'm on are exactly like my every day life and symptoms of my chronic conditions, how am I to know if the medication is making me worse, or better, or neither? If I can't recognize the side effects.
I am so tired of having psych called in on me and being told I have anxiety or depression when, first of all, anxiety is a symptom of 2 of my disorders, not a separate diagnosis, and then come to find out that 44% of my medications could be heightening my anxiety and 31% could be heightening my depression? That just doesn't seem fair?

I am so tired of being told that I need to lose weight when I don't even get suggestions of how to lose weight I'm only told. And I'd really like to hear some suggestions if they would actually listen to me to learn that I'm only on 750 calories of formula and 500 calories of a mocha every day making that 1250 calories total a day. That is no where near what I should be consuming to be gaining weight at 2-3 pounds a week, and it's certainly not something that I'm doing on purpose and not something that I can control. It's obviously a metabolic issue. Please give me a suggestion on how to fix my electron transport chain, please, it would solve so many of my problems.

I'm so tired of being told that I need to work on my sleep hygeine all the time, that it's my fault I'm tired all the time and can't stay awake during the day. Because in addition to having a severe energy disorder that already makes most people that have it take several naps a day, 63% of my medications cause fatigue and tiredness. So my body already doesn't make energy and then 63% of my medications are taking whatever energy I do make and sucking it away because that is what they do. 

All I want is someone to sit back and look at the whole picture. To see me for me and to see what I'm trying to do to stay as healthy as possible. I wish that when a side effect happened then we would stop prescribing a different medication for it, we just fixed the problem first so we didn't have to add another medication. For example, we found out my florinef was depleting my potassium stores, so instead of lowering my potassium dose, we added potassium to my medication list every day. Or I told the psychiatrist I was feeling unmotivated on the anxiety medicine so now she wants to add an anti-depressant on top of it. Why don't we just fix the underlying problem instead of just putting more and more medications on top of it. 

And please for the love of God, trust me that there is no way on the face of the earth that I ever wanted drugs to be part of my life. I am so scared for what my life may hold because I have to be on these kinds of drugs long term. I really hope that I never get addicted. And that is why I am so careful with them now. I set alarms on my phone so I know I can't have anything until the alarm and make sure I pull the perfect amount out and never, ever cheat on anything, even if it's one of the non-habit forming medications. Because I will never be an addict. I know people on the outside may see me as a drug addict, someone who is dependent on so many drugs to make it through today. But I see them as medications. The things that help treat me and relieve my pain so that I can get through some days with as little pain and symptoms as possible. I just wish they had less side effects. So there you have it, my manifesto on drugs, and why I don't like them, and why I think doctors are stupid about them and should talk to each other once in a while to keep the patients best interest in mind so that these crazy interactions aren't happening all the time. But, right now, in my life I have to have all these medications. And even though it's the scariest thing in my life. I've gotta overcome that fear. Because living is much better than being scared to take some meds.

My 6 PM, 2 PM, and 10 PM Meds

My Morning Meds

Saturday, May 3, 2014

It Wasn't A Waste of Time If You Learned Something

I don't know if you know this or have figured this out by now, but I have a very type A personality. I want things done correctly, in an organized fashion, on the first time, as fast as they can get done. I've had planners with color coded pens to give each thing in my life a different color so I knew what was what for as long as I can remember. I don't go anywhere without my planner. My whole life has been planned out since I was pretty much in elementary school. I would go to college, work in the summers, get a job as soon as I graduated, budget my money, and have like 3.5 kids with a big dream house with a white picket fence. I knew I was probably going to be a special education teacher, or at least some kind of teacher.

When I started teaching my life was planned down to the second all day. Between teaching with no planning period, being on committees, being a track coach, and going to school online to get my masters degree I had to have my whole life planned, basically.

I knew the value of planning. I mean there were even Bible verses about planning. But what I wasn't understanding about those Bible verses was that they were not talking about me planning, but God planning my life for me. For example, in Proverbs 16:3 it says "Commit to the Lord whatever you do, and He will establish your plans." So to me that says as long as I'm committed to the Lord God I get whatever my heart desires. Right? Wrong.

You see this type A personality girl who had her whole life together but didn't realize it until she lost it all was about to be taken on a whirl wind adventure over several years of what God had planned for her and she in no way thought that this could possibly be God's plan for her.

It all started at my first hospital admittance on September 11, 2009; 4 years, 7 months, and 22 days or 1695 days ago. There I was diagnosed with Celiac Disease and Ulcerative Colitis. I lost the ability to eat all my favorite foods and found out that I would spend the rest of my life having very not so fun testing done at regular intervals and I could at one point lose my colon because of it.

Then the next year I had just lost my job as a middle school autism teacher due to some health circumstances and other things. Then because of the stress of not having a job and not knowing what my future held, I went into a severe flare of my colitis. I was admitted to the hospital on September 13, 2010 for a total period of 13 days. This was 3 years, 7 months, and 20 days ago or 1328 years ago. While I was in the hospital all this time I came very close to dying a couple of times due to my critically low potassium levels and not being able to hold any nutrition down.

Then 2 weeks after I was released on October 22, 2010; or 3 years, 6 months, and 11 days ago or  1289 days ago; I thought my life was over. I was being forced to move across the country to live in Indiana with my mom since I couldn't take care of myself any longer and I had no income what so ever. This was the hardest day of my life. To leave everyone I loved so much behind, my life behind, my church behind, my independence behind.

For the first couple of months I lived her I just focused on getting some strength back. But then on January 6th, 2011; or 3 years, 3 months, and 27 days later or 1213 days later I started back at college at Indiana State University to do my pre-requisites for the dietetics program and I was admitted that spring to the program. I was doing well in the program academically and with clinicals. But my dysautonomia was getting worse and it was harder to get to school every day and making it through clinicals.

July 1st of 2013; which was 10 months and 2 days ago or 306 days ago, I finally met with a cardiologist in Indiana who was actually a dysautonomia specialist. He finally got some of my meds straightened out and started me on weekly saline infusions and I haven't passed out since I started seeing him but 3 times and those were both on weeks I couldn't get infusions.

On September 23, 2013; or 7 months and 10 days ago or 222 days ago I was admitted to IU University Hospital for a week and had just about every test under the sun run on me. I also got a trial NJ tube to see if that would stop the passing out spells I was having with eating, and it did. The only problem with this is I was missing a whole week of school which was not allowed.

Then I had to miss 3 more days of school the next week because I had to get my permanent surgical J tube palced on October 2nd; 7 months and 1 day ago or 213 days ago. At the same time they placed my J tube they also did full thickness stomach muscle and small intestine biopsies, a thigh muscle biopsy, and placed a port in.

Obviously, that was a pretty big procedure so I spent several days in the hospital then was supposed to be on bedrest for 6 weeks and already knew I was going to have to change my tube out at some point soon too, which meant another surgery soon. On October 11, 2013 or 6 months and 22 days or 204 total days ago the inevitable came. I knew it was coming. I don't know why I was so shocked when it actually happened. At this point I had been out of school for a month and we are only allowed to miss 2 days before being booted from the program. But it came. I got an email from the professors saying I needed to withdrawal and try again next semester unless I could come back by Monday. I still needed 2 more weeks of bed rest and still needed a second surgery so I knew this would be impossible, so I dropped out of the program in the last semester of classes. The semester right before clinicals. And it killed me. I had prided myself on being so sick and never missing a day of class, and now this. And then come to find out I didn't even need the small intestine and stomach muscle biopsies because my doc was using them for research that I didn't even consent too and that was why my recovery was taking so long in the first place, not because of the tube. So my life, in that instant completely changed again. I thought I was gonna make it. I thought I was going to make it through without delays. I thought I was going to get my masters degree without incident. But that wasn't in God's plans apparently.

Within 2 weeks of dropping out on October 25, 2013 or 6 months and 8 days or 190 days ago I was admitted to University again for complications. This time I stayed for 9 days. I knew if I hadn't dropped out 2 weeks earlier they would have been kicking me out when I was in the hospital. And that would not have been fun at all. So that was a small answer to prayer.

My point to this whole long stroll down time stamp memory lane is that 10.5 hours ago, I was supposed to be graduating. I was supposed to be walking or wheeling or crawling across the stage at the Hulman Center to get my diploma for my masters degree. That is what I was supposed to be doing today instead of laying in my recliner semi-high on all the drugs that I'm on and then going to big lots to buy pretty spring flower LED lights to decorate my IV pole with. Or talking to people in support group after support group saying I so feel what you're feeling right now, especially since most of the people aren't feeling good things right now.  That's what I was supposed to be doing today. I was supposed to be having the best day of my life. But instead I've spent 90% of it in my recliner watching a Law and Order: Criminal Intent marathon in between naps that I've been sneaking.

Now don't get me wrong, I have good days, and I have bad days. Today is just one of those days that seems so bad. Like something that I had no control over cost me so much. So much time. So much schooling. So much energy. Like why can't I be done by now. And I feel the worst for my friends that did graduate because they keep inviting me to do things with them and their families and I just can't. Because while they're all going out to restaurants celebrating graduation I'm sitting in my recliner hooked up to my feeding tube pump and wondering if I will be able to finish this next time or if some weird health thing will jump up and make me quit again. I just can't emotionally handle it and be around them right now. And that makes me hurt too. Because that's not fair to them. But that's where I am. I just can't do it. Not right now. I really am proud of them. But I'm still in that place of my mind that says "it's just not fair, it's not like I asked to be sick, I should be graduating too." So that's where I am today. I am sad. Because I made plans. And God said wait. And when God says wait, instead of yes, or no, I believe that is the hardest answer of all. Because you're not completely shot down from your idea, but you can't have it right now. You have to wait for God's perfect timing. And sometimes that takes a long, long time. And that is what kills me. I'm not a good waiter.

Right now though I am getting pleasure out of helping people whenever I can in the support groups and sharing what knowledge I do have to help them get the information they need so they can advocate for themselves. Maybe in a way this is preparing me to be a better dietitian one day. I got this sweet message from a woman I was chatting with last night when I was telling her a little about my story, and about how I could help some because I was a dietetics student with some of the food related issues and she was going on about how inspirational I was and was doing so good for someone who had been through what I had been through and still finding a way to have purpose by offering advice to people and being supportive of them in groups. And that makes it all worth it folks.

So I'm still here playing the waiting game. Waiting to finish school. Waiting to get better. But I have a new date in mind now. May 2nd, 2015 which is in 11 months and 29 days or 364 days away!!! That will be my graduation date! Finally!