Sunday, April 30, 2017

For the Person who Listens to my Fears

Dear you,

You are the person I go to when I feel like I have no one else to talk to. Sometimes there are problems or questions only you can solve. You are the person I go to when I need that calm reassurance that everything will be okay. 

You are the person I tell when I'm proud of myself for something. You are the person I go to when I am crying, even if I'm trying to hide it. 

You listen. You understand that I don't need you to fix me. I just need you to be there, to listen. 

You challenge my thoughts while still validating them. You give me advice while asking my opinion too. 

Thank you for our late night talks. Thank you for your guidance and wisdom in a time where I felt completely lost and confused. Thank you for helping me see the light at the end of the tunnel. 

As you know by now I sometimes have difficulty in relationships. I don't trust easy and am constantly questioning our relationship. Mainly my part in it. I'm always worried that I'm being a bother. So sometimes I'll ask....and then worry that that is a bother. Thank you for continuing to silence my fears and my guilt. 

Thank you for not giving up on me. I know I can be a lot to handle. I hope one day to be able to convey to you just how much all you've done means to me. 

For now, dear you, thank you. 


Saturday, April 29, 2017

Finding a Good Therapist

Finding a good therapist can sometime be an uphill battle. When I first began therapy at fifteen I didn't know what it was supposed to be like. I didn't understand the connection and trust that was supposed to be present. 

My first therapist was Dr. C. He was a good guy. I saw him for two years and he kept me alive for those two years. I especially appreciated that he was willing to continuously learn about my new diagnosis of Schizoaffective Disorder. 

I feel bad for everything I put Dr. C through. For the first little while, I don't even know how long, maybe a couple months I barely talked. I was severely depressed and time didn't mean much to me. I also didn't have the words like I do now to be able to talk about how I was feeling and what was wrong. A lot of our first visits we sat for quite some time in silence. 

Most of the problem with Dr. C. is that I didn't trust him completely. I did trust him enough to work with him for two years. He was also the first person I officially told I was raped; however, I still didn't trust him enough to completely surrender everything. I honestly believe though that at the point in my life where I saw him I didn't have the capability to do that. 

The next therapists that I worked a lot with were B and T when I was in Canon House. For those of you who don't know, Canon was the residential treatment facility I stayed at for 10 weeks when I was 17-18. B was my individual therapist and T was my family therapist. I loved them both. T was the first therapist I completely trusted, although I worked really well with both of them. They were kind and caring, but also knew exactly what I was capable of and didn't let me get away with anything less. They pushed me to be my best self and for that I will always be grateful. 

Working with B and T at Canon taught me what a therapeutic relationship with someone I trusted could really be like. When I went home I sought out a new therapist. This time I wasn't settling. I was going to find the right person. 

I saw a therapist for a month after I came home and honestly I don't even remember her name. We didn't work well together. She coddled me too much and I needed someone who was willing to push me. 

It is vitally important when searching for a therapist to find someone you work well with. You won't click with everybody. If you don't mesh well with the first therapist you see, go see a different one. Trust me you won't be offending anyone and it will work out so much better for you in the long run. 

After deciding that therapist wouldn't work for me I starting seeing the therapist I've been working with now. J is awesome. We've worked together for 15 months and gotten so much great work done. She pushes me to be my best self and helps me see me as I actually am not as my disordered thoughts tell me I am. 

I feel very grateful to have found a therapist that I can work so well with. In some ways I wish I had found her earlier, but I don't regret staying with Dr. C. He was what I needed at the time and got me to where I was. 

There is such a stigma around going to therapy, but it honestly doesn't need to be there. Therapist are there to help you succeed. It is nothing like the stereotypical therapy model that you see in comics and on TV. If you need help, if you need someone to talk to then seek out a therapist. I don't know what I would do without the ones I've had. 

Unbroken by Mental Illness

I've been in therapy since I was 15. I was hospitalized five times as an adolescent and spent ten weeks in a residential treatment facility. 

I'm still not "fixed". 

I sometimes feel that because I'm not as unstable as I used to be that people expect me to have become all better. I felt like this a lot after I came home from Canon. 

I don't know if people really expected me to be better or if it was just another unrealistic expectation I placed on myself, but I've come to realize that I will never be "fixed", and more importantly, that I don't need to be. 

I am unbroken. I don't have to be repaired. 

Mental illness is a clinical illness. Just like having Ehlers-Danlos Syndrome does not make me damaged or less than, neither does struggling with mental illness. 

Needing to go to therapy every week does not make me weak. I am receiving treatment for my illness. Would you deny a man with kidney failure dialysis? Of course not. 

In my early years of diagnosis I mainly saw what my illnesses would take away from my life. The things that were no longer possible for me. I saw how my life would never be normal and the hardships that would follow me. 

I didn't have the eyes to see at that time the changes that were happening in me for the better. I didn't see the strength and the insight I was developing. I didn't see the voice that was blooming waiting to be set free. 

Now I do and I realize that even though I am not "fixed", I don't need to be. This is who I am and this is who I will stay. 

Saturday, April 22, 2017

How One Fight Sent My Day into a Tailspin

As someone with mental illness my emotions can sometimes be rocky. This can especially be true when it comes to some of my core beliefs or what I call "damaged thoughts" that stem from my assault.
I was reminded of this earlier this morning when my entire day was sent into a tail spin over a stupid fight with my dad. I feel emotions very deeply and I'm sure it was made worse by the fact that I didn't sleep much last night.
I try to not fight with my parents as much as I can because I am very sensitive about feeling like people are mad at me or I've upset someone. But this morning my dad and I argued. It was over the phone and the first problem was that I was in the middle of Target.
I'm more of a wet anger person than a dry anger person. What I mean by that is that when I get angry my emotions tend to spill over and I will start crying. So when I hung up the phone I burst into tears and tried to make my way out of the store without making a scene. I then sat in my car for an hour and a half because I could not stop crying to calm down well enough to drive myself back to campus.
I stayed around my dorm and the community center for the rest of the day. I have been s emotionally raw that if I think about wrong thing I'll burst out crying.
I get that this probably seems like an over reaction, but this isn't all about the fight. It was about everything that happened this week. The fight was just the spark that set the hay on fire.
I'm not writing this for sympathy. I'm not writing this for pity. No. I'm writing this because it's my way of process today. I'm sharing this because this blog is about honesty. The whole point of my writing is to show the good and the bad of mental illness and how it affects my life.
It's not always glamorous. My eyes are puffy. My cheeks are streaked and I'm wearing pjs. I don't look beautiful tonight, but that's okay. I'm trying to be patient with myself for the times I don't have it all put together. Considering what I have going on in my life I am doing pretty well. I'm choosing to celebrate my little successes each day while still being true to the reality of what I'm going through. I'm taking it a day at a time. That's all I can do.

The Balancing Act of Chronic Illness

It is 2:30am on a Friday night. My body has been screaming at me for hours. My pain level canceled out my sleeping meds. Yet still it is just now that I have gotten up to take a pain pill. 

I have been taking psychiatric medications since I was fifteen. Medications do not bother me. I know they are sometimes necessary. 

I am not worried about what other people will have to say. I have gotten unsolicited advice many times before. It does not phase me. I don't care what other people who are not inside my skin have to say. 

So why won't I take the pain meds that are in my cabinet?

I honestly don't know the answer to that question. I think part of it is because they aren't prescribed for the reason I'm taking them. They are left overs from my surgery and my car accident. When I saw a pain management doctor I was told I was not in enough pain for him to manage me. 

If I was not in enough pain shouldn't I be able to handle it? Shouldn't I be able to do like he says and exercise more and it will all be okay? 
The logical part of me says no. I know my body. I know he didn't understand how bad my pain was. I know the exercise I'm capable of and what I'm doing. 

Maybe it's a denial thing. I'm worried that once I start taking pain meds I'll never be able to stop. Not in an addiction sort of way. I'm not worried about becoming addicted. I am very careful and the medication I have is non-habit forming. More in a "this is my life now" sort of way. 

I guess I'm still learning. I'm still learning how to manage my pain. I'm still learning how to listen to my body and answer its needs. Chronic illness is a whole new rollercoaster I have never ridden before. I'm still learning what are the acceptable changes that I can make without doing something that will take away my independence in the long run. I've had two experiences with this lately. 

I stopped using the crutches I had been using for the past few months in hopes that walking more would help build the muscles in my legs. I'm training my Psychiatric service dog to do some mobility tasks for me and she's doing awesome, but she can't take the pressure off my worse hip the way the crutches did. Due to this my hip joint has slipped out of place a couple times this week. I knew this would happen. I was prepared for this to happen, but it's caused my pain levels to be higher than normal. 

This is the first week this semester that I have walked around campus without the crutches and I'm hoping that with time it will get better. 

The second experience happened last week over Spring Break. I've been having a lot of muscle weakness in my legs lately especially in the mornings. I have to take a shower in the mornings and sometimes my legs just don't want to hold me up. This leads to me missing a shower sometimes (thank you dry shampoo and wipe baths). 

When I was home for break a couple days I sat down in the tub for my shower. This helped when my legs were weak and it helped with the fatigue that comes after taking a shower. 

I mentioned to my mom that I wanted to take a stool back to school to sit on in the shower some days. Trust me, no one wants to sit on a dorm shower floor. She really urged me not to, worried that if I start sitting to do the things I usually stand to do that I would lose the ability to do them standing. 

I understand her concern. I know it's a lot easier to lose muscle than it is to gain muscle. I'm doing physical therapy exercises everyday trying to gain muscle and it doesn't come easy. I'm still trying to find a balance though between what I should and should not do. 

It's the same with the medication. I'm trying to find a balance that will work with my life. I know I will find it. I know it's possible for me to have a good, happy, and productive life. All things in time. 

Wednesday, April 19, 2017

Johanna Basford's Inky World Calms My Own

I plan to do a whole post on coping skills because...come on, they're coping skills. I could talk for days about coping skills. However! That is not the point of today's writing adventures. No, no, today the focus is on one favorite coping skill I have: coloring.

(Side note: For those of you who know me well or know my writing well might notice that my tone is a little off at the moment. I'm very excitable right now. Probably because I forgot to take my 5pm anxiety med until 6:30. Sorry mom. Anyways, back to coloring.)

Now I am not talking about a little kid getting out their princess coloring book and jumbo crayons, no. I am talking about the art craze that hit the world in the past couple years. You guessed it: adult coloring books.

I am a fan. I am a fan of one artist in particular. Her name is Johanna Basford and she lives in Scotland. She is a cute little mom of a toddler and an infant and in the past four years she has released five adult coloring books and it working on a sixth.

Johanna's art is unique because all of her work is done by hand. Everything in the book is done by hand and let me tell you it is amazing. I can't use any other printed coloring book now after using hers for so long. You can go to to check out her books. They even have an art gallery on the website where you can send in your own art.

I go to my coloring all the time to use as a coping skill. I, at times, have really bad anxiety or restlessness, but sitting down to color can always calm me down. I use different books depending on the mood I'm in. If I need to focus hard and lose myself in the details I will use the Lost Ocean book because it is very intricate. If I want to just relax and fade away I will use Secret Garden or Magical Jungle, which happen to be my two favorites.

Coloring allows me to relax, breathe, and launch myself into an inky world of flowers and animals in any color you can imagine. I love being able to use my emotions to create something beautiful. It brings some calm into my otherwise chaotic world.

Coping skills are so important. I cannot say that enough. Coloring works well for me and I will always suggest you try it. Pull up a seat, grab your colors, and lets dive into an inky adventure.

Tuesday, April 18, 2017

I Met With A Sexual Assault Prosecutor

I had the enlightening opportunity yesterday afternoon to meet with a Deputy District Attorney. I have known Tamara since I was in Elementary School and she was the mother of a friend of mine. After I released my post Why I Never Reported My Rapist to the Police she reached out to me and invited me down to her office to learn more about the process of reporting and convicting domestic violence and sexual assault cases.

I found our meeting yesterday to be very informative. I have to be honest, I was a little anxious leading up to it, but when I first saw her and we opened with a hug all of my fears went out the window. It was like meeting up with an old friend.

I enjoyed learning about the process and specifically the many steps and programs in place here in Bakersfield for the victims. All of my knowledge came from my initial experience reporting and statistics I had researched.

She was able to explain to me more in depth how the process worked and why at first glace some of those statistics can be misleading.

Tamara works in the DA's office and specifically handles domestic abuse and sexual assault cases. She told me how the team she works with was brought together and transformed about seven years ago when her new boss came in who has a passion for prosecuting these crimes and helping keep victims safe and comfortable.

One of the first things Tamara taught me about was the Victim's Services Unit. This unit is full of advocates whose sole responsibility is to the victims. A victim is always allowed an advocate. They can be there from the initial report all the way through to sitting with them on the witness stand in court. The Victim's Services Unit is separate from the DA's office and if it is the victims wish they even uphold their rights when it comes to engaging with the prosecutor. To top it all off, they have a dog! Legend is a sweet dog who is able to sit with victims on the stand and help them feel safe when they have to testify. Tamara has worked with Legend on multiple occasions and she reports he is especially helpful with children she has worked with.

We also talked about some statistics that I found from RAINN about how few rapists are ever convicted. The report stated out of every 1000 rapes, 310 are reported, 57 arrests will be made, 11 cases will go to prosecutors, and 6 will lead to incarceration.

I was understandably concerned when reading these statistics, how can so few rapists go to jail? Tamara was able to answer some of my concerns about this. Part of the reason is another thing their office does to help victims of sexual assault have the power and feel safe. A lot of victims don't want to go to court for a variety of reasons. One way they always have the control is that the choice is up to them. Tamara told me they will never prosecute a sexual assault case without the victim consent.

I learned that all the detectives in Bakersfield always want the case to get prosecuted and work tirelessly to make that happen, all the prosecutors she works with want the rapists punished, but they will not force the victims into a trial. That is a big reason those numbers are so low. I do want to be clear. I am in no way blaming victims for this. There are a whole list of reasons why a victim would not want to report or prosecute and I understand all of them, so does the DA's office.

I asked Tamara what she would tell a victim who was afraid of the process. I loved her answer; it came in a couple parts. She would, of course, let the victim know that they had the choice. It was up to them. She would also tell them that even though it's about them, it is also about others. Tamara informed me that many times it has happened where one girl reports and with that the police are either able to connect other reports or through investigating find other victims. Both of those things make the cases stronger. A big thing she told me she would tell them was that she has seen so much empowerment come to the victim through the court process.

A lot of the times for people I have talked to and in my own experience when I think of court  I think fear, but Tamara let me know that while there can be some scary instances in her experience it empowers victims more than anything else.

One of the last things I learned yesterday was that it's never too late. Sure reporting right away and getting a rape kit done and potentially having DNA makes a case strong, it's not the only way to get a case done. Tamara let me know that both her team and detectives who handle sexual assault cases have had extensive training and understand how reporting works. A lot of times reporting is done late, sometimes stories are inconsistent. They know this and are patient when working with victims. The police also have many tricks up their sleeve for investigating these cases and can a lot of the time make a case even if there is no DNA. Bottom line: don't give up.

I am so grateful to have been able to meet with Tamara yesterday and learn about reporting and prosecuting sexual assault cases. I learned this and so much more. This information helped me and I hope that it is able to help some of you out there who are going through this process, know someone going through this process, or are considering starting the process.

Saturday, April 15, 2017

I Hope They Call Me On A Mission

I grew up singing the Primary song 

I hope they call me on a mission
When I have grown a foot or two
I hope by then I will be ready
To teach and preach and work as missionaries do 

Tonight at the adult session of Stake Conference all the full time missionaries were asked to stand. This isn't uncommon. What was uncommon is that when they all stood up I began to cry. 

I have had the desire to serve a full time mission for my church since I was a teenager. I thought I would be able to do this. Sadly due to my mental illnesses I am not able to go on a mission as I would like. 
For those of you who aren't Mormon I want to be clear that having a mental illness does not disqualify you from serving a mission. You does, however, need to be managed well enough that your focus can be on your service. The mission field is full of blessings, but it's not always easy. There are challenges and hardships and trials. 
I do not disagree with them. If I were allowed to go on a full time mission I would most likely end up returning early. That wouldn't be good for anyone. 

In my church there is a system set up for those of us who cannot serve full time missions. I will be able to be honorably excused from a full time missionary serve and have the opportunity to live at home and do a part time service mission. 
Something I struggle with is going back and forth with accepting this. Don't get me wrong. I want to serve and I'm willing to serve however I can. There have been many times when I think I have accepted that I cannot serve full time, but then there will be another time following that when I desperately want to serve a full time mission.

Tonight was one of those nights. When all the missionaries were asked to stand I couldn't keep from crying because I wanted to be standing with them. I think part of why I was so senesitive was because last week I had to postpone my service mission. 

You see, for the past four months I have been working with my Bishop setting up my service mission. I was supposed to start in June. My mental health and physical health has gotten to be that that is not possible. I need to focus on staying healthy right now and so last week I put my mission on hold. 

I did try to make it clear to my Bishop though that this was in no way canceling my mission. I don't care if I can't serve until I'm 30 (okay, hello hyperbole), I will do my service mission. 

I know that the Church of Jesus Christ of Latter Day Saints is true.  I know that my Savior lives. I know he loves me and he died so I might live again. I know he Atoned for my sins. I know he felt all the pain and hurt and sickness I have ever and will ever feel. I know he had gone through it so that by him I might. I know God is my Heavenly Father. I know he hears my prayers. I know we have a prophet who is alive today who tells us what God would have us know now. I believe Joseph Smith was a prophet who saw God and Jesus Christ. I believe the Book of Mormon to be true and that it goes hand in hand with the Bible. These things I have faith in. These things I trust in. These things I want to share. In the name of Jesus Christ, Amen 

Friday, April 14, 2017

Seeing My Rapist Again

Everyone's trauma story is unique to them. There are a plethora of different ways people can experience abuse and by a wide variety of people.

One common myth about sexual assault is that it often occurs by a stranger. We have this perception of bad guys lurking in dark alleys with ski masks on. In reality according to the Rape Abuse and Incest Nation Network (RAINN) only 28% of rapes are committed by a stranger.

I sometimes wonder if it would have been easier if I had been raped by a stranger. If I would have been able to move on quicker if I didn't have that broken bond of trust and if I never had to see my perpetrator again. I can't say for sure because I haven't experienced that, but I know that having to see my rapist is incredibly difficult.

I don't have to see him as often as I used to. I have taken measures to remove myself from places he is near. Sadly that even includes my home.

I generally don't have to see him at church anymore. The one thing my church leadership was able to do was move him to a different ward. I have mixed feelings about that. I wanted away from him so bad and was so grateful when my Stake president offered to move him to a different ward because my family and I were about to move to a different ward ourselves to get away from him. I feel a sense of guilt though with him being sent to a new ward. Not about him, but my biggest fear is that he will rape another girl and I felt that now he had access to new unsuspecting girls. My ambivalent feelings aside I am grateful I didn't have to move from my ward and that I don't have to see him every Sunday.

There are only two days a year I know we will for sure be in the same room. That is for Stake Conference. Twice a year when all the wards meet together to hear from our church leadership. I go and so does he.

I have been thinking about it a lot because that biannual event is this Sunday. Easter. I expect it to be difficult because although I don't know the exact date I was raped because of Dissociative Amnesia, I do know it was very close after Easter. Sadly I now relate this wonderful, joyous holiday with the worst day of my life.

I'm always scared to see him. Even still. I think at this point I'm not scared of him doing anything to me. I know he can no longer hurt me. What I'm scared of is how I will react. When I see his face everything he did to me comes flooding back sometimes just in memory and sometimes in the form of a flashback. I never know how I will react. Will I scream? Will I freak out and try and hit something? Will I crawl under the table or run away? Or will I sit calmly in my chair while internally shaking? I don't know.

I know what some of you are probably thinking. Just don't go. It's one Sunday. You can skip church one Sunday so you don't have to see your rapist.

I know. I could easily stay home if I wanted to, but there's a reason I go and it's the same reason I still attend the same church building where I was raped and the reason I still sit in the row in the chapel I have always sat in. Because these things are important and sacred to me. I am not going to let him take them away from me. He doesn't get that.

So I will go to Stake Conference on Sunday. I will sing the songs. I will listen to the speakers. And I will see my rapist.

I won't be alone. My parents will be by my side as well as Jenny. I also have a few select people at church who know who he is. They watch out for me and make me feel safe as well.

I know I'm strong enough to do this.

Thursday, April 13, 2017

Teachers Can Be Guardian Angels Too

My life has been full of guardian angels. I've been so very blessed to have so many been placed in my life to aid me on my journey.

When I look back on my years in high school they still amaze me. The fact that I graduated on time is no small miracle.

My sophomore year I started my journey with mental illness. It started with a Major Depressive Episode which transitioned into my first psychotic episode. My second psychotic episode started near the beginning of my junior year.

Due to the nature of my symptoms and the frequent hospitalizations I wasn't in school very much. Sophomore year I missed at least one day a week due to the severity of my depression. The end of my sophomore year I went on medical Home Study.

I wanted to go back to school for junior year, but when my second psychotic episode started I went back on Home Study for all of junior year. That year was so rough I was unable to do any work the whole first semester and completed the whole work between January and May of that school year.

Again, my goal was to go back to school for Senior year, but instead I went to Residential, a choice I will never regret. I did go back to school part day for the last semester of my senior year because I wanted to walk the stage for graduation.

Throughout all these ups and downs with school I received an incredible amount of help. At this time in my life I hadn't accepted my journey yet and was still embarrassed of my mental illnesses. I told hardly anyone. The select few people I did tell though carried me through those years.

My parents were my biggest advocates. My dad did most of my junior year assignments right along side me. He sometimes had to read me the text book before we did the questions because my mind did not allow me enough clarity to read.

I cannot say enough good things about the high school I went to. The administration was incredibly supportive and worked so well with me to get done everything I wanted to accomplish. They never gave up on me. I know that I was incredibly lucky to have such a great school admin.

Through all of this there is one person who stands out. I could not have done it without him. Since I have not asked permission to read about him I will shorten his name to Mr. T.

Mr. T was one of those teachers who cares an incredible amount for his students. He was one of my teachers sophomore year. When I went on Home Study the end of sophomore year he was my Home Study teacher. That means he came to my house each week and went through my work with me. He was also my Home Study teacher for most of my Junior year.

Mr. T was also one of the people on my emergency list for someone I could always go to if I had a problem at school. I could go and sit in his class if my hallucinations or anxiety got too bad. He was one of the people I was always honest with. He was a great listener and always found a way to make me smile no matter the situation.

I remember the time I had my first hallucination at school. I was in another teacher's pod. I was walking in circles unresponsive. None of the teachers, admin, or security guard could get through to me. I think they couldn't get ahold of my mom so they called Mr. T out of his classroom to come down. He just talked to me. I didn't really pay attention and I didn't respond. I couldn't, but he started cracking jokes. That was enough to make me smile. For a small moment he was able to pull a little bit of me away from my hallucination.

When I went back to school Senior year I tutored for Mr. T. I loved still being able to see him and talk to him when I needed to. I've gone back since graduation to see him too.

Mr. T. was definitely one of my high school guardian angels. I don't think I could have graduated without his help. Everyone deserves to have at least one teacher like Mr. T. in their lifetime. One they will never forget.

Tuesday, April 11, 2017

Sexual Assault Awareness

April is Sexual Assault Awareness Month and I want to talk about awareness. This is a topic I am very passionate about speaking out about. The conversations that surround the topic of sexual assault is one that is too often taboo.

I am not afraid to say that I was a victim of rape. There was a time I hid this fact from those around me. I was scared. I was scared of how I would be perceived, looked at, and judged.

Since coming out about my experiences I have had such a great outpouring of support. I have also been able to grow and heal immensely through the writing I have done.

I can understand how this can sometimes be awkward or uncomfortable to talk about, but it needs to be said aloud. When we open up and talk freely we give others permission to do the same.

Another area of awareness that comes separate from being willing to talk about sexual assault it. That awareness is being aware of the danger that is around us.

So many of us, me included, go around life with the assumption that we are safe because we're with family, or at school, or with friends from church. This was the case with me. My attacker was in my ward. I trusted him. I trusted everyone at church. I assumed that because we were together every Sunday learning about Christ that we were all good people.

This isn't always the case. Now, I'm not saying everyone is dangerous. More than not those we know are safe, but we still need to be aware of red flags. We need to talk and educate ourselves and our children.

Have that talk with your kids. It might be uncomfortable, you might not want them to know that evil is in the world, but it could help keep them safe. If I knew then what I have learned since I would have been able to see the signs that this guy was not a good person.

This month being sexual assault awareness month is the perfect time to do it. Let's raise awareness. Let's spread hope and knowledge and let people know that their past doesn't define them.

Saturday, April 8, 2017


Every now and then my Insomnia will flare up. I've had problems with my sleep since I was 15. I do take medications to sleep, but even though I'm on some heavy medications I grow tolerant to meds very very quickly. Take tonight for example.

I took my meds early tonight. I took them around 9:30pm I think. I woke up at 1am, stayed awake for about an hour and a half, then went back to sleep until 4am. Now I'm awake and know I won't be going back to sleep.

I've learned through trial and error that for me to sleep until say 7am when I normally need to get up for school I have to wait until midnight to take my pills. They'll last about that long now.

Going up on my sleeping meds is not an option. I take two for sleep. One is Trazodone which I am maxed out on. Since I maxed out on that my psychiatrist added Restoril. That one will put me to sleep while Trazodone is supposed to make me stay asleep.

When she first added Restoril I could sleep from 9:30pm-8am. Slowly that has dwindled down.

Even though I don't sleep I normally lie in bed anyway around 10ish and try to relax. My brain generally stops working well at night. If I'm extremely tired I can fall asleep on my own; however the most my body can ever sleep on its own without medication is an hour and a half.

I normally rely on getting to sleep from midnight to 7am, but then I have to factor in other things. Some nights my pain will be too high that it will cancel out my sleeping meds. Other times I'll have a nightmare and wake up in the middle of the night and be awake for a while.

Long story short my sleep is hardly ever good and because when I do sleep it's due to medication it is more of a drugged sleep and I never feel rested. I know a lot of people have opinions on medications and sleeping meds, but I have tried sleeping on my own and I have tried OTC and herbal remedies, they don't work for me.  If I don't take the meds I take I could go days without sleeping. My body simply won't sleep on its own.

I do go through phases though where it is better than others, however this is not one of those times. Right now my sleep, due to a number of factors, is not very good. This creates a problem because our bodies need sleep. If I don't get enough sleep my pain is higher the next day, the fatigue from my EDS is worse, and my mental health is going to be worse the next day. It's kind of a vicious cycle.

I know that it will get better. I'll get out of this phase and sleep well again, or maybe we'll tweak my meds. For now I just need to learn how to deal with it. Today was kind of my fault. I know better than to take my meds that early, but I was tired so I did it anyways. Oh well. It won't kill me. Just like everything else in life it is something I learn to handle and live with.

Wednesday, April 5, 2017

My Body Is Never Going to get Better, Is It?

I'm going to be honest with you. I'm not making this post to have any sort of moral or meaning. I'm not making it to share a success story. I'm making it because this is something I'm having a hard time with and writing here is how I figure things out. This will probably include a lot of complaining and processing. Fair warning.

I've talked a little bit about how I've been told I have Ehlers-Danlos Syndrome (EDS). It's a connective tissue disorder. We believe I have Hypermobility type and so my main problem right now is that my joints don't want to stay in place.

I've only been dealing with this for four or five months and I'm not going to lie, it has been hard. I'm 19 years old and being told I have a chronic illness. I'm being told that there's nothing that can be done. I'm being told that I need to learn how to live while being in pain. I'm being told I could end up in a wheelchair.

I've been seeing doctor after doctor hoping that someone can help me. These past two weeks that has made it worse actually. I was told that i needed to see a rheumatologist and a pain management doctor. I finally got in to see a rheumatologist last week only to have her tell me that she won't take me as a patient because there's nothing to be done for the disorder I have. Then I saw a pain management doctor on Monday.

It's funny. When I got the appointment set for this doctor I was so incredibly excited because I honestly believed that he was the person who could help me. I became increasingly discouraged when he told me he wasn't going to go forward with treating me, that any treatment side effects would be worse that what I was dealing with, and that all I needed was to exercise more and learn how to live with the pain.

The rheumetologist is setting me up with a doctor at UCLA, and I'm seeing a geneticist there in August. It just seems like everything is so out of reach. In the last month I have seen three specialists in Bakersfield in three different areas of medicine and they have all told me there's nothing they can do. I don't really know where I go with that.

I had been holding on to hope before this last appointment. I had been holding on to hope that my body could get better. I've realized this week that my body is never going to get better and it will probably get worse.

I know there has to be a way to treat this, to find at least a little relief. I know that I just haven't found the right doctor yet. I've made it through so many hard things in life. I know this will be just another obstacle. I have faith that there is a reason for this. I do not know it yet. I might never know, but I know there's a reason. I just need to remain faithful.

The one thing that has been my saving grace this past week is that on Sunday I started learning how to crochet. It has helped me. I have to be careful because it can make my neck/back hurt and I need to be careful with my wrists, but I love creating. It's been very calming.

I guess that's it for now. This isn't a very put together post. I don't mind. I needed to just get all my thoughts down. Congratulations if you made it through all that rambling. Good night.