Recovery Changes

I am still in recovery from my eating disorder (or Ed). I probably always will be. The fact that I can write those two sentences right now is a tell-tale sign showing the world just how far I have come in my recovery. Simply using the word "recovery" still freaks me out because of some irrational thoughts I get from Ed. Thanks Ed. 

I am writing about recovery because my recovery plans have changed. As I am sure most of you have heard The Emily Program is going to be making some big (corporate) changes. Nothing good can come out of that. So, I am going to be losing my therapist. And since I am so stubborn, I decided with my trauma therapist that I would not be going to The Emily Program for my Ed treatment anymore. As of right now, I think it is the best decision for me. And since I was laid off in October, it is the cheaper option too. 

Instead I will be seeing my trauma therapist for my trauma and Ed treatment. Which don't worry, my trauma therapist has 10+ years of Ed therapy experience from Melrose. And she is fantastic at what she does. I think she is my best shot at continuing my recovery and getting better. 

So, now I will be seeing one therapist once a week. My last appointment with The Emily Program therapist is on Jan. 2nd. I don't know why I am so nervous. I am also nervous to make an Ed therapy plan with my trauma therapist too. Which I am assuming we will be doing either this Thursday or next Thursday, not sure. All I know is that I am nervous and excited for this (sort of big) step I am taking. I feel like I am really facing Ed now. It's scary.

More updates to come and please feel free to ask the appropriate questions.

I Still Get Cravings...And Who Is Ed?

Just because I have an eating disorder (Ed) doesn't mean I don't have cravings. I still get cravings. I crave milk duds and chocolate during Halloween season. I crave pumpkin pie at Thanksgiving. I crave candy canes and goodies over Christmas. I crave chocolate on any normal random day of the week.

So, yes, I still get cravings. That is a totally natural things. It is Ed that is unnatural. I had started reading an introduction to this book about eating disorders, written by someone that recovered from Ed. It explained that Ed is like another person that lives inside you, telling you what is and isn't OK. Ed is a an extremely controlling forces that doesn't know when to stop. Ed battles you even harder when you decide to get treatment, or admit to yourself that you have a problem or even if you talk about Ed as something that exists. My relationship with Ed is so complicated, it may be the most complicated relationship I have ever had. It isn't like I can turn Ed's voice off in my head or slam the door in Ed's face. Or even walk into the next room. Ed follows me where ever I go. I had to stop because of how upset Ed got. Ed put me back into a deep depression after I read those ten pages that explained very well about who I was dealing with.

 

I was torn. Half of me was reading that intro and loving it and wanting to read more for inspiration for my own writing. The other half of me was pissed and emotional. That half was Ed, that half wanted me to throw the book as far as I could or even burn it. The half of me hated the lies I was reading. That was Ed. My depression and PTSD were doing so well for a couple of weeks until I read that simple introduction. I had no idea what I had gotten myself into until I got that night and cried my eyes out over how pathetic I felt and how I was never going to recover.

 

One of the things that was said in the book is that Ed is one of the toughest things you will ever face in your life and it is also one of the hardest things to want to fight. Why is it to difficult to fight something that you know is so damaging? It is for me, still. Therapy is helpful but it is still so intensely grueling.

There are many stereotypes that follow everything. But with eating disorders, there are multiple that I have come across only while since being diagnosed. I notice them when I have simple conversations about food or just general conversations where I have mentioned that I have eaten that day. I see things through the perspective of others eyes when talking to them about food in general. Those people don't even have to know that I am living with Ed for me to notice those stereotypes that come off of them. Or even if I am eating in front of people I can feel it, the stereotypes or there thoughts of "good for her, she is eating piece of cake. I am so proud. She seems to be doing better." When in all reality I will punish myself for eating that piece of cake later and I am just doing it to look "normal" and because I kind of deserve it. But Ed will punish me. Ed will make me cry and talk down to me later. Or was even tormenting me while I was eating it.

 

I am just trying to see eating as a normal healthy thing. Like eating "regularly" because I have never know what that is like. I have never had structured eating habits. They have always been all over the place and it got worse when I went to college because I was in charge of my eating. At least when I was in high school I had a scheduled breakfast and lunch. I didn't have that in college. I am surprised I made it through college with the amount of food I didn't eat.

Personally, I have been getting better at giving into those cravings without punishing myself. Ed doesn't like that though. For a long while, not only would I not give into my cravings but I wouldn't eat. There have been many days were I have "starved" myself. Gone to bed on an empty stomach, on purpose. I would wake up in the morning and drink a glass of cold water. I loved the way it felt going down and settling in my empty stomach. However, I always ate cereal. I had to, so I could take my various medications for my other illnesses. I still make sure I eat breakfast. Breakfast is the one meal that Ed is OK with, for the most part. Like as long as it is a small breakfast.

 

My entire life, almost, I have relied on Ed to keep me in control of a part of my life. Ed lied to me. Ed is manipulative. Ed sucks.

Ed Therapy-The Waiting Room

One of the most difficult parts about going to eating disorder therapy is sitting in the waiting room.

Here are a couple of things that go through my mind once a week:

Why is it that all of the therapists are skinny, perfect-looking white women? I don't have a fucking clue?!

And everyone stares at each other in such a judgmental way, including me. It is really hard not to. We are one of those typical disgruntled woman thinking "wonder what they are in for?" Like it's a prison sentence. I guess that's what it feels like. I usually never want to go. Well, half of me does. The eating disordered half does... But after I have I am feeling about half satisfied. And it doesn't last long.

And sometimes it seems super obvious as to why someone's there. They can be uber thin and you know they aren't bingeing. Most of the time it's difficult to tell. But when you overhear a conversation about losing weight followed by a congratulations, you know that they binge. Or "over-eat." But that my not be true either because I can't stereotype or generalize what they go through. But those are just the dumb thoughts that I have. Like I have this enormous jealousy of them when they loose 13 pounds. Because a huge part of me wishes I was twenty pounds less.

The point of this post is to help people understand how fucking awkward and awful it is just to sit in the waiting room where you feel judged and shameful and embarrassed. It doesn't get better. At least not for me. Not yet. I am still very ashamed of my new diagnosis. Even though I have been living with it for the majority of my life. It is still an intense thing that I have to live with. Especially now, since I am giving it more attention.

I Have Been Living With An Eating Disorder

Last summer, more specifically on July 6, 2017, I was officially diagnosed with an eating disorder (Ed). I was diagnosed with Eating Disorder Not Otherwise Specified (EDNOS), it is actually the most common but the least known of the eating disorders. I had known about Ed for awhile. My entire childhood and getting into high school, then college, I knew about Ed somehow. I just didn’t recognize it for what it was. I also didn’t care enough to get any help. I didn’t want to be labeled as another one of those young girls with an eating disorder. I thought I had a handle on it. I thought I knew what I was doing. In all reality, I was wrong and I was getting worse.

There were and are a lot of things that I didn’t want from Ed that I had been living with nearly my entire life. I didn’t want to be told what I could do or couldn’t do from other people. I didn’t want to be told that I had to eat. I didn’t want to be looked at with pity. I didn’t want people to think I was stupid, vulnerable or that I just wanted attention. I still don’t want any of these things after being officially diagnosed and “out” about my Ed.

 

The reason I waited so long to talk about this on social media is because I was worried about what people would say to me. I was worried about what people would think of me. And I also didn’t want to be labeled, again, as a person who has multiple disabilities. Even though it is true. You see, there are many stereotypes to having Ed. I didn’t want to fall into those, even though I know I do fall into some of them. I didn’t want people's pity, I didn’t want their prayers, I didn’t want their thoughts, I didn’t want their opinions on what I should do, I didn’t want their snarky comments and I still don’t want any of those things.

What I need from someone who cares: I can’t have people talking about weight or eating in front of me, in a sense. Never talk about weight. It can be okay to talk about eating. Like, making plans to eat for example, would be fine. But don’t talk about calorie intake or amount of food. I know some people will not like that I am giving restrictions for them but I don’t care. This is what I need right now to help my restriction of food. Once those topics come up, Ed’s wheels start turning and that is what will make it harder for me to overcome Ed and actually eat something.

What you need to know: It is usually easier for me, personally, to eat in groups but only when there isn’t talking or discussing about my Ed or weight or calories or the amount of food there is in front of me. But if people are glaring at me and watching every bit that I put inside me, I will stop because I will feel humiliated and ashamed. So, please don’t do that. If you have questions or concerns about this, please just ask. I will be fine with that. Then I know you care.

However, I decided to write this now and tell people on my social media because the holiday season is coming up and that scares the hell out of me. A lot of my family members and friends know about Ed but I think they don’t understand how it has affected my entire life and how it has changed and affects me now. This is for them.

This is also for everyone else out there that is silenced by Ed. I needed to bring myself out of the fear and humiliation I thought I would get from putting anything on social media so I could start spreading awareness about Ed and debunking stereotypes. People need to understand that they can't just assume that they know what I am going through because of what they have seen on T.V. or in movies. Some of those aren’t even accurate. Some of them are. I just don’t trust a movie or T.V. series to talk about an important issue like Ed when someone, like a director, actor, producer, etc. hasn't lived with Ed.

However, the Netflix original “To the Bone” is a film that I do recommend you to watch. I related to it, somewhat. And many people that were involved in the making of that film have had experience with living with Ed. But you need to understand that that film is just one to a few personal narratives of what it is truly like to live with Ed.

I put this post out there so people ask questions. They can learn from my experience as I have. But my experience doesn’t count as everyone else's. My experience is mine and only mine. I can’t have people telling me what is good for me. I can’t have people telling me how much food I should eat. I can’t have people serving up my dish. I can’t have people looking at me differently. I know this may be very hard for you but I just can’t have this in my life. I am working with a therapist from The Emily Program. So, I don’t need anyone’s unsolicited advice when I have a professional's, that is actually helping me.


For the past six months, I have been writing about Ed and how it has been affecting me and changing over the past ten or so years. I have been discovering how and why I have Ed in the first place but I won’t release that information until my memoir comes out. Because there is no need to until then.

But I can say that ever since I was officially diagnosed, Ed did get about ten times worse. Being diagnosed triggered it and I had some really bad couple of months. Therapy has been helping, which, frankly, surprised me. This is all coming from a person that wasn’t just in denial but I cancelled my first two therapy sessions. The first time I went on the website to look more into the program and what they could do and where it was, the first time I was actually doing something proactive, I had a panic attack. Recovery for me is something that is still very scary. Being this irrational is something that is unsettling and fearful. But I am getting there, I am getting better.

More posts to come about this...

AWARENESS MONTH!

October is Dysautonomia and Invisible Illness Awareness Month. This is a picture of me after I woke up on my bathroom floor from passing out last month after taking too long of a hot bath. Hot baths affect my blood pressure and heart rate causing me to pass out. Most of the time I am usually fine--in the terms of not passing out but only feeling dizzy and woozy. The reason I take them is to ease my pain. Which I would rather not have pain and pass out. It is so complicated. Having an illness is when life gives you a bargaining chip. I can do this fun thing, like going out with friends, but I will feel like shit later on (or more like shit, in some cases). Or sometimes I have to help a symptom but in the process make another worse. My life is a pick-and-choose situation with how I feel. Most, of the time I decide that it doesn't even matter because no matter what I am going to feel like shit. 

However, I have been taking baths every night and have passed out or almost passed out quite a few times but it is worth it because it is tremendously helping with my pain. And my pain has been extremely bad and some days unbearable. 

Looking back at this picture is, honestly, somewhat odd for me. I know what I was thinking, I know what I was feeling and you can tell, if you look at my eyes, that I am extremely exhausted and feel miserable. I remember that night. It didn't get much better after I took that photo.

October is a perfect Awareness month to have for these disabilities because it's proven that because of the weather change and it's affects on our bodies it's the worst month of the year for people who have chronic pain or any type of physical illness, really. Not looking forward to this month for my physical health. I can and have already felt the affects. My pain levels have been much higher.

I hope abled-bodied people keep us disabled bodied people not only in their "thoughts and prayers" but maybe actually reach out to us. Ask us how we are doing! Take us out to eat! Ask us if we need anything!

Lady Gaga's Documentary On Her Chronic Pain

I have and will always be a true fan and supporter of Lady Gaga! I have many reasons as to why I have to be loyal to her. Some I may get to, others are too personal for me to share on a blog and you'll have to wait for my book/memoir to come out.

She has always been an idol because of the way that she honestly expresses herself to the world. She is who she is. She is all about love. She supports LGBTQIA organizations because she identifies with that group, along with me. It was so great to have someone to look up to for me. Her songs, music videos and work has truly expressed herself and has helped me and others find themselves through her music and work. She is a goddess.

In the last couple of years, news of her illness(es), mental and physical, have become more aware to the public. Not because they were leaked but because she spoke out about what she was living with. She spoke out to let others know that they are not alone. And I am sure it helped her feel less alone too. She spoke out to let people know that she is, in fact, a human being capable of being affected by these very human things, like illness.

She has helped empower many young women, many young LGBTQIA individuals, many rape and sexual violence survivors, etc. She is truly amazing. She has empowered me!

I write this because yesterday her Netflix documentary "Lady Gaga: Five Foot Two" came out. As soon as I got home from work, I watched it. I had too. Not only is she my idol but she is a famous person portraying to the public what it is like to live with a disability. She is fighting and breaking down those stereotypes of disability. These a very important things for me to know as a Disability Advocate and as a person living with multiple illnesses. I needed to know what people will be influenced by. Not just people who live with illnesses but people who don't.

Over the past month or so, people have been talking her documentary up as a documentary solely about Gaga's illnesses and pain. Her documentary is much much more than that. It is about her, not her pain. I was actually surprised when watching it because of how much it was about her and not her pain, like everyone was saying.

This documentary was about her and how she interacts with fame, family, friends, producers, managers, fans, and...her illness. It isn't just about her illness. And that's what I like about it. If it was just about her illness then people would think that her life is consumed by it. Viewers of her documentary see a 360 of Gaga. And as a viewer, I appreciated that. I didn't want just the illness or just the fame. I wanted to see what her entire life was all about. And they did just that.

Although, the documentary wasn't solely about her illness like most of the internet had said, there were some stereotypes debunked and there were some moments were she taught viewers what it is like to live with an illness that is invisible. She also taught viewers how expensive treatment is and how lucky she is. She said that she wouldn't know what she would do with her resources and that she doesn't know how others, who have less resources, live with an illness like hers. That is something that I highly appreciate because I don't have nearly as enough resources to help my pain and suffering.

I could say more, but I think I got most of my thoughts down...

What are your thoughts about Gaga's new documentary?

It's OK To Feel Angry

Written in Feb. 2017:

I can't find the words to express how pissed I am feeling.

Let me try to explain...I thought I was going to have a good semester. I didn't expect a perfect one but I thought I was going to be happy. This is my last semester! But NOOOOO! Shelby doesn't deserve a good semester. Instead, trauma follows Shelby. Instead, Shelby ends up in the ER. Instead, Shelby gets dumped by her boyfriend. Instead, Shelby gets sexually harassed at a coffee shop. Instead, Shelby's semester isn't good. In fact, Shelby's semester sucks.

I am angry at my WORLD. I have learned that it is OK to feel anger. It is a natural emotion, one that everyone feels at some point in their life. Anger usually develops from other emotions and feelings. Those others are usually a lot worse than anger. Shame, for example. Shame may not seem worse to you but shame for me has made me look far down on myself, along with many other negative attributes.

However, I am lucky to have people in my life to help me understand these frustrations. They have helped me understand my faith. They have helped me understand why trauma seems to follow me. Life's irony, mostly. And my weaknesses.

P.S. This probably won't make any sense. I just needed to vent a little. I just needed to publish a post with me venting. UGH...

Updates On My Life

I am finding it difficult to come up with things to write about for this blog in particular. I have been so focused on my memoir and I don’t want to publish anything on my blog that will be in my memoir. Which I have taken some blog posts and extended them already. I guess I could share how life is going overall.


Job: I can’t believe I have been working at my job for over three months. Those months have truly gone by fast. I enjoy my job. I have been learning a lot about bankruptcy court, conciliation court, and reality law among other things. My job this summer has been going really slow. I have downtime to read books and write in my memoir or short stories. I do enjoy the downtime but I also wish I would have more work to do. And because of my illnesses I have already used all of my paid days off. So, if I miss parts of any days for the next six months I won’t get paid for them….stupid illness and doctor's appointments. That is a big change from school. I could easily miss class for an appointment and not have to worry greatly about the effects it would have. Now that is all I do. I love my boss! We get along very well. But I don’t get along with a co-worker of mine. And I don’t know why, I think she is just extremely bitchy towards me. I am not sure if it is because I am so young or she thinks I am stupid or what. It is just really annoying to have to deal with her--especially when I did nothing wrong.

Apartment: I continue to fall in love with my apartment. It is the perfect size for me and my two adorable kittens. I get along greatly with my landlord and neighbor. We hang out sometimes and eat late suppers, watch movies and drink and talk about life. It is really nice. I got extremely lucky to have such great people to live near. Right now my best friend has been couch surfing at my place for the last two weeks and she plans to stay with me until her parents get settled into their new home in the cities. It has been nice to live with a best friend. I have never experienced that before. But it can get a little crowded with the two of us and my kittens.

POTs: I have been having a lot more flare-ups lately but they are finally starting to simmer down a little bit. I have been passing out more frequently. I have been having a lot more pain. I am finally on pain medication that helps with that. My energy level has been low and my fatigue level has been high. I have been getting a lot of sleep and that still doesn’t help, really. I usually go to bed before ten now. Sometimes I go to bed right when I get home from work if I am so exhausted.

Mental Illnesses: My depression and PTSD have not been doing great this summer. They both actually got really bad, the worse I have ever felt mentally and emotionally. So, that has been difficult. However, I did start seeing a trauma therapist once a week and she has been so helpful. I think this is all I am willing to share about this, right now.

School: Just when I am done with undergrad everyone is now asking me about law school and when I decide to go. I am not sure honestly. I just tell people “within the next five years.” That usually shuts them up. I mean I just got out of undergrad, give me a fucking break. I am exhausted and have a lot going on. I don’t even want to think about law school right now. And I am young, so I have plenty of time. Today, Hamline’s Undergrad classes started and it I really odd for me because I am just sitting at work typing this up thinking about how I miss campus and the professors and my friends. I can’t stop thinking about the disability organization that I started and how I am worried about how they will do this year without me. I keep reaching out to my friends who are going to run it and I tell them that I live close by and have time to help them if they need it.

Volunteering: I have volunteered my time and energy at an organization called Saving Grace. They are hosting a huge convention in St. Paul on October 27 to promote education and awareness for domestic violence and sexual assault. I have been helping market for the event and I will be working at the event when the time comes.

Other than those things I have had a lot of friend and family drama but that’s not something I am going to get into on my blog because that would just create more drama. And I am not ready to disclose with everyone what my new diagnosis is.

Updates On My Life; Job, Car, Health...

A lot of pretty amazing things have happened in my life, in the last month or so.

I graduated with a Bachelor of Arts in Legal Studies with a minor in Religion from Hamline University. I got my Paralegal Certificate the day before that. It was exciting and unreal. I still can't believe that I am done with my undergraduate schooling.

The week before I graduated, I moved into my very own studio apartment in St. Paul. It is small, quiet, in a safe neighborhood and right by the bus stop! I have no roommates, have great neighbors that live above me and I also get a full bathroom to myself. That is worth the rent just alone.

The Monday after I graduated, I started my new job as a paralegal at a law firm in Downtown St. Paul. I love my new job. I have a great boss, it is a small and causal firm which is perfect for me. Surprisingly, the law isn't as boring as I thought it was going to be. We work with really stupid people everyday and it is increasingly entertaining. It is a perfect start to the great career I know I will have.

Last weekend I got my first car. It is old and used but works for now, until I can afford to get a newer one. It did drive me all the way to the cities from my hometown, which is good.

I will be getting a rescue kitten in a couple of weeks! She is adorable and I think I am going to name her Ivy!

My health hasn't been the greatest. But, for now, I am just trying to ignore the fear the lingers around some very specific worsening symptoms. Just hoping they don't get worse. I will be seeing my cardiologist in July, although not sure he will be able to do anything for these symptoms.

And I won't even mention that I got an iWatch the other day! WHOOPS! But how exciting is that? I pay monthly for it, and I will be able to pay it off by the end of July, with all the other bills I have.

It does feel great to have things finally looking up for me. It has been a long while. I have been waiting and waiting for me to crash and burn again, like I did my entire last year of college. But the medication does help. Still will never be completely healthy but better than having no health at all.

The best part about graduating and living on your own is that it is just you and only you. I don't have to worry about anything else. I just have to worry about me. I can do whatever I want. I can sleep, eat, read, write and do whatever I want, whenever I want. Especially, now that I have a car and am living on my own. It is great and I couldn't have been here without all the people that have supported me.

Five Years Ago, Today, My Grandpa Leo Died

It doesn't feel like he died five years ago, today. It doesn't feel like it has been that long. It seems like just yesterday, he was getting his lung transplant. It seems like just yesterday, I had called him for good luck wishes for my High School Spring Play performance. It seems like just yesterday, I felt that annoying yet comforting poke in the shoulder he always gave me. I could go on and on about how it feels like he was just here with us because I still think of him on a daily basis.

I missed him at my last five birthdays, at the last five years full of holidays and celebrations. I missed him at my High School Graduation. And next month, I will miss him at my College Graduation. I will miss him. I do miss him.

That is why I write. That is why I call my grandma Joyce. Because I not only miss him but I have to check in on her. She is all alone, in her big empty house. I feel guilty when I come home to visit. I feel guilty when I think about how alone she is, while I live my own separate life in St. Paul. I always feel guilty when I can't be there for someone I love.

Guilt isn't the only emotion that I have felt since my grandfathers death. I have felt a major loss. I have felt anger, sadness, loneliness, confusion, but also love, in knowing that he is always with me.

I will never forget the day he died. I will never forget the days leading up to his wake and funeral. I had to prepare his eulogy. Not only because my family asked me but I wanted to. That is when I started to write to cope with my emotions. I was 15-years-old when he died. I grabbed a pencil and a notebook and went outside of my grandparents house and sat under an enormous and beautiful tree and I sat and wrote. I cried. I laughed. I felt better. I then typed up his eulogy, edited and revised it. Then a couple of days later, I gave my grandfathers eulogy in front of all the people that loved him. I front of hundreds and hundreds of people in a packed church. I didn't shed on tear when I said those words of love. I would do it again and I would say more.

As I look back at my eulogy, I would have said a great deal more. I would have had more time without him and more time to truly think of things to say. He helped me grow up. He was my grandfather. I am still very lucky to have three living grandparents to continue to help me grow up some more and help me when I need it.

But my life has never been the same since he died five years ago, today. And the lives of my family members have not been the same either.

Two Year Diaversary

Today, April 6th, marks my two year diaversary (diagnosis anniversary) of Postural Orthostatic Tachycardia Syndrome. There are many emotions that come to me; anger, denial, acceptance, sadness, depression, relief, etc. I am experiencing a storm of emotions.

Since I have been diagnosed with POTs, I have been to the emergency room six times because of flare-ups. I have passed out countless times, injured myself countless times, missed class and meetings countless times, had to cancel plans countless times, etc. You get the picture.

A lot of you have even been on the other end of those times. I have either cancelled plans on you, missed a class that we took together, had to cancel a meeting with you, or maybe you were lucky enough to see me during the middle of a flare-up or have taken me to the emergency room, or were at least able to visit me at the emergency room.

Two years doesn't seem that long ago, but to me, it feels like an eternity. I have gained and lost a lot of friends, have gotten into arguments with friends and family, have had many laughs, and many cries. I've experienced many different places, taken and learned a lot from various classes, have had way too many ups and downs to even count, mostly downs. A lot can happen in two years, a lot can happen in one.

On this day, I always reflect on how my life has been completely changed because of not this diagnosis but this illness. I have been living with this illness for probably a good six years. During this reflective time, I realize how glad and relieved I am that I don't have diaversary days for my other diagnoses; depression and PTSD. I don't think those days would be good for me.

I think out all of the shitty things that have happened to me, this is the one day that I am glad that I actually have an anniversary for. Other then my grandfathers death, but that shitty thing happened to our entire family. And there is no escaping death of a family member or friend, or the anniversary of it. So, those days will just keep adding up. Also, my grandpa Leo's death happened on April 29th. I have two very difficult anniversaries in April.

I am glad I have an anniversary for my diagnosis of POTs because of the reflection that I have been able to do these last two years. Reflection is good. Self-awareness is good. Knowing what illness I live with is good. Being able to get treatment for my illness is good. Good things have happened since my diagnosis. But also a lot of bad things. However, in a lot of ways, the good things "out weigh" the bad things.

I don't know who I would be or where I would be, if I had never been diagnosed. What if I were living a life, not knowing what kind of illness I was living with? Do you know how scary and confusing that would be for me, my friends and my family? Oh, wait, I have lived that life.

Passing out and experiencing outrageous symptoms on a daily basis, isn't so weird when you have a diagnosis. Do you know how weird it would be if I didn't know why these things were happening to me? Yes, I do. I was undiagnosed for like 4 or 5 years. It was awful not knowing what was wrong with me, or if there even was anything wrong. I felt crazy. The doctors made me feel crazy. That is one of the reasons I hate going to see doctors or most professionals. They are usually assholes that don't care about your feelings. It is a miracle if I have a good experience with one. As you probably have read before on my blog, I have had bad experiences with many doctors.

Anyway, in a lot of ways, I can't believe it has been two years since I had to have that awful Tilt Table Test done on me. TWO YEARS! ONE TEST! ONE DIAGNOSIS! CRAZY! FINALLY! That is my relief speaking, by the way. The relief of having a name, having a treatment plan, having friends with the same illness and not feeling alone anymore. What relief! 

And the support! Woman, have I gotten so much support from so many people. I know now who I can and cannot talk to about certain things because of this little thing called trust. I have learned who I can trust. I have learned who I can turn to on my bad days. I never truly knew how loved I was and am, until I was diagnosed with an illness. NEVER! TRULY!

Lately, I have been having to remind myself about these individuals in my life that bring me up instead of down. Because I have been down and I don't need those individuals that bring me down in my life. That is, unless, they are forced into my life and I can't get away from them or the things they have done to me. Then I have to put up with them. But then I remember that I have other people in my life to bring me up. I concentrate on them. I know, that a lot of you know who you are. At least, I hope you do!

Overall, I believe. No, I know that I have grown as an individual greatly. I have grown a lot from this illness and from the diagnosis. I have done a lot. I have become more of an illness and disability advocate for myself and others. I started the ALIVE (Advocating for Life, Illness Visibility and Education) group on my college campus. I have learned from others who live with illnesses. I have learned more about who I am as an individual, as well.

Overall, the last two years have been good. That is, in the sense of me growing as a person. Because a lot of shitty things have happened, even not related to my POTs. But I guess I still grew from them too.

ER Visit Number...? And Thank You!

I have a lot to say right now...and always...if you know me that is usually how I am.

I am literally starting to lose track of how many ER visits I have had in the past almost two years. And I thought to myself yesterday, after getting out of the ER, that maybe for once I am actually fine and don't need to write about this visit in order to cope. But I was wrong. On Thursday, I was asked by one of my religion professors "how are your spirits?" I paused because I didn't know how to answer. And still don't really know what to say. I knew what to say about how I felt physically but that was about it. I guess I didn't have the time to mentally assess how I am actually feeling emotionally and mentally. And it is not good, in fact, it is scary. Not just because of this one ER visit this week but for the last almost two weeks I have been going through a really rough time. It feels like everything is falling apart when I know it isn't. I am a senior, I am graduating in May and most importantly I have a plan. So, why does it feel like everything is falling apart? My ill health, that's why. I feel helpless. Not just my physical health but my mental health. I am not ashamed, I am just concerned and need to write. Writing helps.

I don't really know how to explain why I feel this way. When I have so many people that love, and support me. Not only do they do that but they also make me feel a lot better. They encourage me to do things that I would have never thought of doing. They encourage me to think in new and different ways in order for me to mentally heal. They encourage me to open up and talk to them when I really need to. Yet I feel so alone and I feel so helpless. I have this feel of dread over me and I can't shake it. I feel like my body and mind are so sensitive right now that almost anything will trigger it. And I HATE it. I hate it so much. I am trying and working so hard on becoming healthier but is such a struggle.

These past two weeks I have been able to do a somewhat major reflection on all the people that support me. And this may be more of a healing thing for me but also just want them to know how much I appreciate them and all the kind words they have said to me over the last couple of weeks and months. I think I am just going to go down my thank you list and prove to my readers why I am thanking these very important people in my life;

THANK YOU PROFESSORS. But just a handful; you know who you are! In the last couple of days and weeks, I have been feeling pretty terrible and I have had my professors to thank for giving me support. It has truly helped me a lot. Like, you have no idea. I started by thanking my professors because they have especially been helping me get through not only these past two crappy weeks but also, they have been a tremendous help during my entire time at Hamline. They actually see my pale face and sickly body weekly. Not only have they said words of kindness and love but they have also just been able to listen and put up with me. And that in itself is what I appreciate. I know and understand how much drama is in my life and when I find people that truly care and help me through my drama--I really appreciate them. These are some of their responses from emails showing just how much they care and/or are words of encouragement.

"So very sorry to know you had to head to the ER...Praying for a much better day for you today!"

"I'm so glad you're feeling better, and I hope soon you'll feel even less lousy."

"Oh, Shelbs, I'm so sorry. This is getting all too familiar (...with you). It seems if the system were better organized there wouldn't be so much need for ER. Good for AJ for being there for you. Hope you're feeling better by now. Of course, keep me posted!"

"So sorry to hear about the tough week last week. I'm so very sorry to know that the depression has been really difficult to deal with. That's so lousy. As well as the physical symptoms you're dealing with...I'm so glad that you're reaching out to counseling and to professors so you can get the support you need. I really hope this week will be a better one for you, Shelby. And I look forward to seeing you..."

"Hopefully you don't have to wait too long [in the ER.] Yes, let me know how you're doing."

"Do not feel like a bother! You didn't ask for these issues to deal with, and I and others are richer for having you in our lives. And I know I've been supported by SO many people (like you!) and I feel like even if I spent all day every day being supportive of others I wouldn't even the score of how much care I've been given. So we support when we can, and we receive the gift of support when we need it! But right now take good care of yourself and do let me know how you're doing."

"Sorry to hear that but thanks for letting me know. Take care of yourself - that's the first priority."

"I enjoy talking to you too. You give me a different perspective on my problems. I'm sorry for the terrible things that happened to you. It's credit to you that you haven't let them sour you. You have a strong life force despite the challenges you face."

"I'm also so glad that you're with a good counselor, and that you're feeling like you're taking some steps toward healing. This can take a very long time, but a big first step is the recalling and understanding the trauma that you've been living with...it's been such a pleasure to work with you and to get to know you beyond the classroom as well. I so hope that your last semester at Hamline can be a really great one for you, and one that launches you into what I hope will be an exciting new chapter in your life. Hoping for so many great things ahead for you! Keep me posted on how you're doing. Take really good care..." 

"I'm happy to be there and you know you can contact me any time."

"Being triggered and having panic attacks sounds difficult. I hope you will do some extra self-care in the coming days...whatever that is for you. Anything that reminds you of your strength and treats you to comforting and relaxing activities seem like good ideas!"

"You can always vent to me. Sorry you had an attack--you seemed to be doing so well!"

I honestly don't know how I am this lucky to have these professors in my life. I have known some of them for only a year and others for three. And they all have taken great care of me. They are one of the reasons I am able to graduate this May. They just aren't professors but they are mentors in my life.

THANK YOU HOMETOWN COMMUNITY. But again, just some of you! I hope you know who you are. These people have seen me blossom into whatever I am now and they have seen me struggle while growing up. They have seen me change and become the person I am today. They have continued to show support and love even though I am living almost three hours away from them. They are all amazing! Some of them even more amazing because without them I don't think I would have ever made it to Hamline. Without some of them I have no idea where I would be or the type of person I would have become. I have decided to thank them second because some of them have actually taken care of me while in the middle of a flare-up and have seen me at my worst. Some of them have seen me actually pass out and have body tremors. Some of them are high school teachers, a part of my church community, neighbors and my mock trial coach! They have challenged me to become a stronger and wiser person. Here are just a couple of things they have commented, messaged or texted me.

"It will be ok, I am always a phone call or text away...always"

"Thank you for sharing. That's not easy to do. I am sorry you had to suffer that. My heart aches for you. That's something no one should have to endure. I can't imagine what it's like. But I am glad you are on the road to getting help for it. Depression is a tricky son of a bitch. It sneaks up on you and you don't know it's happening until you're far away...You can make it! You have people around you supporting you. All you need are a few strong people who care and you got that. It's not an easy road but you are aware and that will help you so much."

"Oh I am so bummed and heartfelt sorry. Wish I could of been more help."

"Life is either an adventure or work! Make it exciting, enjoy the unknown! Do the things you can control...You are a smart strong women. (Period) You can do whatever you set your mind to, I'm not worried at all for you...always look to cross a new finish line."

"Remember your lifeguard walks on water."

"I'm so sorry, Shelby. If I could help you out in some way, I sure would! I'll pray for you tonight..."

"Hugs...you are a strong fighter."

"Do you need anything?"

"Once a student of mine...Always a student of mine."

"You are no burden to those who love you...remember those who matter won't mind and those who mind...shouldn't matter. Hugs and blessings."

"Just remember that you are in good hands, and always in people's prayers! I'll say some extra prayers for you now as I head off to bed. Promise!"

"Okay...friend...please for me...drink some water tonight and take care of yourself...I value you very much...so please don't let yourself get run down."

"I have faith in you and know you are a fighter."

"Shelby, you are in my prayers."

"Stop in! But if you ever need to talk [if] you're feeling down, hit me up!"

"Are the flares getting any less frequent? Glad to hear you are out and doing better."

"Oh dear, you know we always will make time for you when you need us."

THANK YOU FAMILY. Some of my family has been amazing. Some have brought me to the ER, some have given me great advice, some have asked questions and just listened to me. I have really learned who truly loves and supports me during this storm. They are the ones that reach out to me when they know I am not feeling well. They are the ones that ask questions and try very hard to understand what I am going through. And some of them also have illness(es) so they have shared how they feel too. I have conversations about illness and trauma and life with these family members and it is amazing to have someone that you are related to understand what you are going through. They also make me feel important and also don't make me feel like I am a burden or a bother, when I do feel like that a lot of the time. And I have to say some because I have also found out who I can't count on to be there for me. Or to even reach out to me. This is a big lesson I have learned over the past couple of years, not just because I am away at college but because I am dealing with these unfortunate things in my life. I have actually had some family members say shocking discouraging things and insulting things to me or about my illness. Although, some of them probably didn't realize that they were hurting me--it still can hurt. I have been blamed for my illness and the way I feel by some family members and other people that are not related to me. But still, no one has a right to say that to me. But here are the amazing and supportive things that have come from some of them, either through messages or comments on Facebook.

"Hey Love! I just read your blog! I'm just letting you know that I'm here for you if you ever need to chat or need anything!! I love you!"

"Do you need to be hydrated or a trip to the ER for some saline to help you feel better?"

"Love you girl and I hope you have a good day!!"

"How are you today?"

"I know how you feel. I'm always here for you. I know it's hard to ask for help and keep things to yourself. But our family and friends are there for us. We need to be thankful for them and not be too proud to ask for help. I am learning!!!...We are here for you Shelby. Love you."

"Feel better."

THANK YOU FRIENDS. To the friends that have stayed by your sick friend's side, I really appreciate our friendship and can't wait to make more memories with each and every one of you. Some of you have seen me in the ER and some of you have brought me to the ER. Some of you have taken care of me and some of you have just listened to me when I was feeling down. My friends have asked me questions and listened and have actually tried to understand how my illnesses affect me. That is all a girl can ask for in a friend and now I know who my true friends are! I love you all so very much and don't know what I would do without any of you! Love you! Here are a couple of things that my lovely friends have sent to me over Facebook messages and comments.

"Oh, love. I'm here to support you as well I'm glad you told me and definitely want to hear your thoughts and feelings. I love you."

"Awww I'm sorry hun!!! Hopefully a weekend with friends will distract you and help you feel better." 

"Whenever you want to talk we are here."

"Thinking of you. Sending positivity your way."

"You're so strong every day! Sending [my] love..."

"Hang in there, Shelby!"

"Sorry your having a tough time. I hope it passes soon."

THANK YOU MOM. Oh, of course I had to save the best for last. My mom has literally been by my side and also in spirit when I am not feeling well. She has been to all but one of my doctor's appointments that she has to drive almost three hours to just go to. She is the person I always call before I go to the ER. I always have to ask her if I should go or she will just tell me and she is always right. Sometimes I am stubborn and wait like I did this week. Then she rightfully scolds me...she is pretty great. She does it to be supportive, loving and to make sure I follow doctor's orders of course. She is really good at reminding me of what I should be doing and shouldn't be doing. I know my mom feels guilty for not being able to be with me during my bad days. Sometimes she tells me but most times she doesn't and I do wish she could be here with me when I am having really bad days or need to go to the ER. But I feel the same way with her when she was going through a bunch of health issues last fall. I couldn't be there for her when I really wanted to drop everything just to be by her side. That is when I understood exactly how she felt. And mom, I know you can't always be here for me but texting, skyping, calling and you just being so amazingly supportive and loving is what I cherish most about our relationship. I love you!! Her are a couple of things she has texted me and commented on Facebook the past couple of days. 

"Go to the ER then...Did you talk to [your doctors] nurse?"

"Makes me feel better that [AJ's] there for you when I can't be! Love you!!"

"You are in NO WAY a burden!!!! You are a WARRIOR thru and thru.....love my strong daughter!!!!"

The sad thing is that I want to post all of the amazing and supportive things that people have said to me but that would be highly impossible or just really long. I have been so grateful for all of the wonderful people in my life and I don't think I realized this until I started talking more about my illnesses and how they are making my life miserable but also making me stronger in a way. My illnesses have also made me an advocate to others living with illness(es). So, many great things have come out of me living with these illnesses but also many bad shitty things. And sometimes it is easy to only focus on the bad. This is why I decided to share with you these amazing quotes and most of them I have gotten in the last month. 

My advice I have that I have learned from all of this is for you to find and then become aware of your support system because everyone needs one. You can't deny that. That is why, when I am feeling lonely I can come back to this post and read these words of encouragement and love that I have received. Or I can reach out to one of these amazing people that I am so lucky to have in my life.

When You Are Reminded How Sick You Are

Living with Postural Orthostatic Tachycardia Syndrome or POTs has been one of the hardest things I have ever had to do. It is a constant battle--everyday. I have a variety of symptoms that come and go, daily. Every day I have a couple of the "usual" symptoms which are dizziness, shortness of breath, pain, and mild fatigue. Some days these symptoms are worse than my "usual" or "normal" days. It is usually more of my other symptoms that are added to that "normal" everyday list of symptoms or it is those "normal" symptoms but at a lot worse degree. Usually, those "normal" every day symptoms are mild to moderate. Then I get days where I have flare-ups that restrict me from doing things or going places. Those are also on the scale from mild to severe. The severe ones are the ones were I need to or should go to the ER. I am stubborn though and don't always want to give in to going. Like yesterday and today; I had two people tell me that I should go to the ER and I didn't...I probably should have.

Last night I had a bad reaction to my daily medication that helps control my blood pressure and it gave me one of the worst flare-ups I have had since the last time I had to go to the ER--back in October. Because of my flare-up I had to miss class and had a late paper. I did, however, make myself go to my meetings in the afternoon and go to my afternoon class. There were numerous times when I thought my weak body was just going to collapse from under me or that I was going to actually pass out randomly on campus. My symptoms were palpitations, heart racing, shortness of breath, dizziness, fainting, cramping in my calves and feet (making one of my feet curl), headache, fatigue, exhaustion, skin hypersensitivity, tremors mostly in hands, arms and legs, weakness that made it hard to walk, brain fog and some pain. So, I didn't have all of my symptoms but I had most of them.

This flare-up reminded me how sick I actually am. I think I had forgotten--I mean sure I have symptoms everyday but they don't make me feel completely useless and weak. They also don't make me feel "that" sick because I am somewhat used to them. It has become a part of my normal everyday life to just feel like shit. So, when people ask me how I am, I respond with saying that I am my "normal" shitty self. Meaning I am having a "normal" shitty day with my "normal" shitty symptoms. It defiantly sucks but it is a part of my life--everyday. I can't change that. Even if my doctors think I can. I have tried. Maybe not my hardest but I have to live a little. And I have a life and don't have time for stupid shit. By the way there is no cure for POTs--there is just time periods when it goes away but that doesn't mean it won't come back. I have had days and weeks where it has mostly gone away but then one day it comes back at full force.

I thought that I would also add my list of the symptoms that have had. There are two groups I put my symptoms in; heart and non-heart.

Heart Symptoms:

• palpitations
• heart racing (tachycardia)
• chest pains
• shortness of breath
• fainting
• dizziness
• arrhythmia 

Non-Heart Symptoms:

• numbness and tingling from elbow to finger tips and hip to toes
• bad cramping in hands and feet (it feels like my fingers will curl sometimes)
• stiffness in hands and feet mostly, sometimes throughout whole body
• headaches that sometimes turn into migraines 
• brain fog=confusion
• cramping in calves and feet-toes curl
• fatigue
• easy exhaustion
• skin hypersensitivity
• tremors (usually in my hands and legs but sometimes turns into body tremors) 
• chronic pain
• weakness throughout entire body making it difficult to walk

My Not-So-Fun New Diagnoses...

First, I need to mention why I haven't blogged in a while--at least on my own blog that I created almost two years ago. I can't believe it has almost been two years! That is crazy, anyway, there are many, many reasons to as why I haven't written. I will try to explain myself in this hopefully not too long of a post but if you know me it will be...

I didn't know what to write:

Last semester, I was going through a lot of stuff and kept thinking that I should post things or at least one thing on this blog but I just didn't know what to post. And I didn't want to "come out" yet with my new diagnoses that I was still unsure about and was still in denial about--which I will get to later in this post.

I started writing for another blog:

Last August, I started writing for Oydessy. It is a blog where I can write about many different topics that come up in my brain of mine. I wanted to write from something other than my own blog that I created because writing for someone else I can actually put on my resume. Also, these days, anyone can start their own blog. So, writing for another one made my writing more valid and more important. Not saying this is less important. I can also be 100% more free and honest in this blog. Which can be nice.

I was really busy:

Last semester, I worked over or about 40 hours a week, while going to school full-time and dealing with an illness. Not to mention dealing with family and friend drama at the same time. Which goes back to me not knowing what to write. Balancing out my schedule was a task in itself. Not only did I have a full-time school schedule but I was working four jobs and had an internship. Crazy--right? I honestly don't know how I survived...

New diagnoses:

I guess now that my denial has gotten better I finally feel somewhat more comfortable to come out and talk about my new and not-so-fun diagnoses--I guess I will. If people even read this post... 

Last spring semester, I started showing signs of depression. It only continued to get worse until some professors, some friends and some family started noticing my erratic behavior. I know what caused my depression but I can't get into that right now. So, it only continued to get worse and worse through the summer and the fall semester. I started anti-depressants over my winter break and I started seeing a counselor over my January term and I still see her. I am no longer ashamed of my depression and I am no longer ashamed of seeing a counselor. It is a part of life that a lot of people unfortunately go through. 

I was also diagnosed with PTSD. I have been living with this for longer then my depression but I am not comfortable with telling people why I have it--yet. But the stigmas around both--PTSD and depression are ridiculous. That is part of the reason I am not going to talk about what caused them in my life because there are also even more ridiculous stereotypes and stigmas around that. I just don't feel like defending myself over something that happened to me--a TRAUMA that happened to me. 

However, if you are truly concerned about me and you want to reach out to me about this don't be afraid. I am a very open person and if I feel trusting enough with you--I may talk to you about it. You can message me on Facebook or text me.