This is a Part of Me

Hello Everyone,

Something I hear a lot (at least on TV a lot) is "I won’t let this define me" it’s an interesting saying because just by saying it you are letting it define you whatever "it" is. It’s something I used to say too but trying so hard to not let my illnesses define me was just as hard to let them. (I hope that made sense) 

So now I say my illnesses are a part of me. Sometimes they are a small part and sometimes they are a big part. Now I don’t shy away from talking about my illnesses (obviously) if people ask I openly discuss my illnesses. It’s not my favorite part of me but I don’t hate it either like I used to. I don’t wish my illnesses away anymore because I realized something. I wouldn’t be who I am today without going through these things. Who knows who I would be without them?

Because I've been in the hospital for so much of my life I am really into arts and crafts. I jump from craft to craft all the time because when you are in the hospital or in waiting rooms there isn't much you can do with your time. And I don't know if I would be so arty's without my medical problems. 

I'm not saying I'm glad I have them but I am trying to see the better side of things. 

I was bitter and sometimes I still am. I don’t have to be happy 100% of the time. My illnesses have made me truly understand that you don’t know what people are dealing with just by looking at them.

I’m young and I kind of look wild like someone in their early 20's would. But I have three chronic illnesses and many other illnesses besides those three. but I look healthy I put my make up on, get my hair done and go running around but what you can’t see is how much medicine it took for me to leave the house or how I’m struggling to stand up.

I always used the "never judge a book by its cover" but now struggling with chronic illnesses of my own I see people differently and I have a deeper understanding of never judge a book by its cover. I look without judgment you never know what someone is going through or how much pain they are in. I know I never thought I would be this young and in this much pain.

I encourage you to comment to start a conversation. How have your illnesses changed your life for the better or for the worst?

From the girl who has everything, thank you for reading. Please follow and share thank you!

Quote: She’s been through more Hell then you’ll ever know. But, that’s what gives her beauty an edge… You can’t touch a woman who can wear pain like the grandest of diamonds around her neck.

Here we go again

Hello Everyone,

During the time I was writing (welcome to salt lake behavioral) my doctors were discovering that I have an autoimmune disease which they were pretty sure was fibromyalgia. They had run some test but it came back one point under to be fibro. The specialist said it was so close to being fibro and that I had all the symptoms that she was ready to call it. But she wanted to be sure that it was fibro. So we waited 6 long weeks and I got retested.

I do in fact have fibromyalgia and it’s getting worse it seems. I can barely walk and am getting "fitted" for a walker soon. Some days I can barely get out of bed. However because of my various chronic illnesses, mental illness and the fact I’m getting worse on both ends. I’ve decided to try for disability which in Utah is near impossible when you have illnesses people believe in. Stuff like vulvodyina, fibromyalgia, endometriosis, anxiety and panic disorder are all either not believed in or aren’t taken seriously. I’ve had 4 disability lawyers deny my case for at least 1 of 3 reasons. My age, my wage, and illness not being taken seriously.

But I’m not stopping I’m not giving up. I’m on FMLA which has me on part time (which helps wages at least) and because of flare ups I can miss 2 days a week if  needed. It’s helped a little but it’s also given me insight on how bad I’ve really gotten recently. But I’m going to keep calling lawyers until someone can help me. And now finally I have gotten some good new I have some lawyers who think they can help my mom and I have meetings with some of them very soon.

Something that has been keeping me up but also very tired and very busy. I’m setting up my own small creative business. It’s one of the few thing I can do while I lay down. I’m not saying much yet but I hope to have it up at the end of July but will not know for sure for some time.

I encourage you to comment. Have any of you gotten on disability? What were your struggles and successes?

From the girl who has one more thing,

Thank you for reading

Quote: Health is a crown that the healthy wear, but only the sick can see. – Imam Shafiee

Surgery/ Disaster week

Hello Everyone,

I am sorry it’s been so long since I have written my next post will explain why. But for now let’s move on to the next part of my story 

Once I got out of slbh it was time to see my doctor about having surgery for my endometriosis. My mom and I though it would take weeks to get in but it so happened that the surgeon had an opening g the upcoming Monday. Less than a week later. It felt like everything was moving so fast less than a week ago I was in a mental hospital and a week later I would be having surgery.

Monday came by very fast; I cleaned my room and did pre surgery shopping to get ready. The surgery went off without a hitch as far as I could tell. My doctor told me that they didn’t find as much as they did in the last surgery. But there was some in there and we would talk more about it later, at my follow up appointment. And then I went home all patched up.

I was in a lot of pain after surgery but it was expected. But as the day went on it seemed like the painkillers weren’t working and my stomach was getting more swollen then the last time I had surgery. But I only had, had the one surgery for this before. I didn’t have much to compare it to.

So I went to bed and I had a hard time sleeping because the painkillers weren’t working and the pain was getting worse and my stomach was swelling so much I couldn’t move. But my mom didn’t think it was getting worse, but I wasn’t convinced. I swear it didn’t hurt nearly this bad and wasn’t this swollen.

My mom then had my step dad come look at me. And we all agreed that it was way more swollen and if it wasn’t better in the morning we would call my doctor and go from there. But we never got to the morning. I couldn’t sleep so I stayed up and watch Netflix. At four am my mom came into check on me.

I was almost crying the painkiller wasn’t working and I was in so much pain I could hardly move. I told my mom I couldn’t wait to call my doctor, I HAD to go to the er right then. It was hard to get out of bed, get dressed, and drive to the er. Everything hurt and I didn’t want to move. It felt like I was dying and with my anxiety I thought I really was dying. I cried what if I was dying and I would never get to see my mom, my fiancé, friends, family and co-workers. I was really worried and I hoped I was wrong, but I didn’t know what was going on with me.

The whole ride to the er was dreadful I could feel every bump in the road and every bump hurt. We got to the er and they had to come help me get into the wheel chair. I was so out of it I didn’t know what was going on. We got into a room, they took my blood but they couldn’t take urine because I couldn’t pee. They decided to put a catheter in me they thought it would bring me some relief and they could get their urine sample. At that point I wanted anything to give me some relief. I felt like a balloon that was ready to pop. My mom had made the comment that I was so swollen I looked 9 month pregnant.

The doctor came in and said that my blood test showed that my kidneys were failing and I might need a kidney transplant immediately. So he decided to do an ultrasound and it showed that my whole body cavity was filled with liquid. But they didn’t know what the liquid was.

He got out a very long needle (like the ones you see on TV.) and with the ultrasound machine he found a good spot to stick almost the whole needle into my stomach. By this time I was on so much morphine I didn’t feel anything. When he pulled the liquid out it was a bright yellow color, it was obviously urine.

The doctor said it wasn’t that my kidneys were failing it was that my kidneys were over working trying to refile all the urine in my body cavity. Because my body cavity was filled with urine my doctor suspected that during my surgery they nicked a whole in my bladder.

They then took me to do a scan to see if there was a hole in my bladder. And even with the morphine it was very uncomfortable. Then they did an x-ray to see if the urine had done any damage to my body cavity or any of my organs.

When the doctor came into show us what he had found. He wanted me to talk with the on call urologist because I did have e a hole in my bladder and he thought would need surgery to repair it. As for the damage the urine had caused in my body cavity it was pretty bad. My stomach had been compressed (which was why I couldn’t eat) and it also collapsed the bottom of both of my lungs (which was why my oxygen was at 75) and my heart had been compressed also. He said if I had waited any longer (like until the morning to call the doctor) I could have died. And that the bottoms of my lungs looked like the ends of balloon animals. It was terrifying. Having my lungs collapsed it was something that I had to work to repair.

When the urologist came in I was scared I had already spent almost all day in the er, I didn’t want to have another surgery. The urologist told us the hole was actually small and didn’t think surgery would be necessary but something did have to be done, because the hole wouldn’t close on its own.

He wanted me to keep the catheter in for at least one month. I was really out of it when this was discussed. But I still knew I would rather have the surgery then be stuck with the catheter for an entire month. No matter how much I tried to argue my mom and the doctors agreed the catheter would stay in and there would be no surgery.

so finally after 15 hours of being in the er I got to go home and I rejoiced I hated watching the friends reruns over and over again all day long.

For a month the catheter stayed in and the hole finally get better. They took the catheter out and I was so happy. And since the I haven’t had any more problems from the surgery.

I’m trying to be more positive in my life. It’s hard having all these chronic illnesses but me not being positive is killing me. The way I act and the way I treat people is not at all like how I used to be. From here on out I will try harder to be positive even with my chronic illnesses

I encourage you to comment, have you had surgery and how was it?

From the girl who has everything,

Thank you for reading and please follow me for more post!

Quote: here’s an optimistic thought, you’re not chronically ill you’re medically interesting.

The ER and Instacare

In my last post I mentioned how the er and instacare can be a scary place for people with invisible illnesses and in my experience at least it can be worse with mental illnesses. People with mental illnesses sometimes can’t control their actions and usually don’t know why they are doing the things they do.

I’ve had problems with anxiety and panic disorder all my life. I do, say and think things that I don’t know why I do, say or think those things. Usually I know what I’m doing is ridiculous but I can’t stop. Some of my anxiety has formed into a self-mutilation not in the more traditional way like cutting.

It’s not something I talk about often or to many people. People don’t look at me the same way they used to when they know. I have something similar to tricotomania (the hair pulling illness) but instead of pulling out my hair I pull out my toenails and sometimes my fingernails I do it rarely. I’ll pick and bite at my nails all the time. I usually don’t really notice when the picking and biting turns into pulling. By the time I do it’s usually too late and I can’t stop myself. Some of my doctors believe I have some form of ocd too but they can’t agree on it.

One day I pulled out only part of my thumb nail but couldn’t get myself to do the rest. And because I don’t do it very often to my fingers it really hurt. My toenails are more or less numb to the pain now but my fingernails are not. So my mom took me to instacare.

For me going to instacare because I pulled out my thumb nails is humiliating. The whole event is awful from checking in to waiting for the doctor. But sometimes you can get a good doctor that doesn’t judge you just treats you. This was not one of those times.

The doctor came in and asked how I got the injury. I’m very shy and didn’t want to say I did it to myself. But I did end up telling the doctor. I usually have a good sense of people and thought she wouldn’t judge. But when I told her I could just feel waves of judgment from her.

Then she decided to be sadistic about the whole thing.

She took one of those long que tips that has one soft end and one wood end and then she used the wood end to push at the part of my skin that had bubbled up from the hole in my nail. It really hurt so I started squirming and finally said “that hurts” her response was “good maybe next time you won’t do it”. To add insult to injury she wouldn’t give me painkillers she would only give them to my mom because I quote “we don’t want to reward that type of behavior.”

When I left the er I felt humiliated and awful. My mom was very upset that she treated me that way. I cried the whole was home thinking how could someone be so awful. I never wanted to go back to that instacare in case I might see her again. People like her should not be in health care profession.

But overtime I began to get angry instead of just upset. How does someone like herself go to work and get that way with no implications? Well then karma kicked in. I got a call to review her performance. Apparently I wasn’t the only one she had been mean to. I would like to say I was the bigger person but I wasn’t I gave her an awful review and in my comments I said “I didn’t understand how they could employ someone so mean to sick people.”

I’ve been back to that instacare many times since then. But I never saw her again. Sometimes I wish I could see her again so I could tell her she was a shame to the wonderful medical industry she was in. but I would be too shy to say that even if I did see her. 

I encourage you to comment. What are your stories about the er/ instacare good or bad.

From the girl who has everything,

thanks for reading.

Quote: 

Welcome to Salt Lake Behavioral Health

Hello Again, Here are my adventures at SLBH .

               I got to SLBH at 10:00PM on a Monday night, everyone was already asleep and I was pretty out of it. They gave me my sleeping pills and sent me to bed. The next day I woke up at 7:00AM that’s when they woke us all up and took our vitals. Then we could shower, get dress, and whatever else we had to in the morning, and it was then that I had realized what I had done and I wanted to cry so bad and I also cried so bad. I didn’t want to be here I wanted to go home. I called my mom but she was still asleep, by then it was time to go to breakfast. We lined up at the door a guy told me it cheer up that it was great here that he had been there for 20 days. Which made me cry more I dint want to be there for 20 days (he also promptly left the next day)

               I ate some breakfast but I didn’t really feel like eating anyways. But before breakfast was even over I broke down and had the nurse take me back upstairs. I tried calling my mom again she still wasn’t up so I colored until everyone else came back from breakfast. A girl sat down across from me and told me the rundown of the day. We had breakfast, check in, then group, then art therapy, then lunch, then group, then free time, then group, then dinner, then free time, then bed.

               I was finally able to get a hold of my mom, I told her I wanted to go home. That I was scared and didn’t realized what coming here meant and that I really wanted to just come home. She told me I needed to be there and everything was going to be okay and she would come and see me that night. She would give me clothes and anything else I needed from home that was allowed. Which was good because it was very cold there.

               I swear for the next 3 days I pretty much just cried and colored. And by the mid of day 3 I was feeling better, I wasn’t crying and I was participating and talking with people. And at that time everyone who was there when I came in had left. When my friend finally left on day 3 I thought I was going to break down, I thought I couldn’t get through this without her. But somehow I was getting better, stronger and I was able to make it through even when he was gone.

               When I woke up on the 3^rd day there was a new girl there older then I was what I would consider “adult.” She looked like me when I first got there, scared and confused. I went to talk to her and just like my friend had done for me on my first day I told her the schedule. I would help her get thing, she reminded me a lot of my grandma this sweet lady and I couldn’t no help her. We would talk and color for hours together and soon we became best friends thicker then thieves. We’re still friends now. By now I was feeling like me again. I had made great friends and I was laughing again. My friend Melissa and I had bonded over the fact that we both had such severe endometriosis. She was so sweet she looked like a cartoon character with big caring eyes. She would tell me that she was so sorry but that she loved me so much and I would tell her I loved her too because I did.

               On my 4^th day there I had my family meeting (you needed at least one to leave) and tony broke my heart. He told me that I wouldn’t go until at least Monday. I was absolutely crushed I started just whaling. I was in denial I tried to convince tony to let me go home and he would say “NO! when is the earliest you can go home?” and he would make me say Monday and we did that until I pretty much had stopped crying and was finally coming to terms with not going home yet.

               When my family and fiancé had left I cried to Melissa and my two other friends Sheila and Sam and they hugged me and said sorry to me. They also wouldn’t be leaving until at least Monday either. (Which I found out later was mostly because the people that discharge weren’t there on Friday, Saturday, and Sunday.) But at least we had each other to get through the weekend.

               That night we got another girl in our little group. She was a bit off. And most of the time I couldn’t really understand what she was saying. She would ask us all the time if she was going to tell for smoking. I felt bad I think she needed help more help than SLBH could give her. Over the weekend we had a lot of fun and strange events. I went to the gym with Sheila and learned/ tried to do Pilates and I watch Sam lift chairs like weights. We did yoga and drew pictures that represented us. We got to watch inside out (my favorite movie) which was a lot of fun.

               Over the weekend my therapist tony played Uno with us on night. He kept losing over and over again. He said I was cheating because I was sitting next to him stealing all the good cards. Finally he got so upset he threw the cards on the table and huffed. Sam laughed and said “Dude maybe you’re the one that should be in here not us” and we all laughed with him well except tony who glared at Sam and then laughed. It was a great night we had lots of fun.

               Over the weekend we also found out that things with the new girl were a little stranger then we thought. We found out that she hear/ maybe even saw voices. They would do all sorts of weird stuff to her. She would scream when she went to the bathroom but the nurses never did anything about it so maybe they knew something we didn’t. She would say weird stuff to us about babies that came out of the ground and how the voices only liked one of us because they were nice to her. It started to really freak us out. So we needed up telling the nurses because we started to worry about our safety. The nurses said that they would watch her closer for us.

               On Monday I couldn’t wait to get discharged. Right after breakfast I went straight to the nurse’s station to ask if I was leaving. And the nurse said yea you, Melissa… and I stopped him there. I asked if I could tell Melissa that she was leaving that day too. He said yes. And I practically bounced over to Melissa I was so excited to tell her she was leaving with me.

               She was so happy when I told her that she and I would be leaving the same day. Earlier she was so upset thinking, I, Shelia and Sam would be leaving and she would be alone again. She was so sweet when I told her she hugged me and said really? I told her yes and she said “oh I have to go call my son and tell him” I actually got to meet her son as I was leaving. He seemed really sweet.

               I have a lot of good memories from that place. It was scary at first being away from home so long. But it really did help me in the end and sometimes when I get scared anxious mad frustrated or whatever I want to be back at SLBH. Which is weird for me but now it almost seemed comforting being there. But I would much rather being home even when it does get scary being here. I would much rather be out here than in there any day.

Next time I will talk about my second endo surgery and all of the crazy fun that followed that.

Song: I don’t want to be heard I want to be listened to. Does it bother anyone else that someone else has your name? I scream, you scream, we all scream, cuz were terrified. Of what’s around the corner.

Panic! Oh No! Continued

Hello again,

I will pick up kind of where I left off. I had met my soon to be fiancé and after I met him it seemed like I had gotten just a ton more medical problems. I already had generalized anxiety disorder, panic disorder, Truncus arteriosus and other minor medical problems. But soon after meeting Aaron I got diagnosed with endometriosis and later vulvodynia. My world kid of crumbed I started feeling less like myself and less of a women because of my problems. My anxiety spiked but with my fiancés help I was able to gain s some control over it. I don’t know what I would have done without him

A year later I got a job as a receptionist at a great payroll company and I had made great friends. I had trouble missing work because of my medical problems but I tried very hard to come into work even when it felt impossible to move. Kind of forward to this year (2016). I had been having trouble with my anxiety and depression because my pain was slowly getting worse. So I thought I must need a laparoscopy again for my endometriosis. So I made an appointment with my ob./gyn to schedule for the surgery at the end of January.  But my anxiety almost didn’t let me get to the appointment. and something happened something I haven’t really talked about because I was ashamed. But if I’m ever going to get over it I can’t be ashamed anymore.

On January 17^th I had myself check into a mental facility. When I had tried to get myself in one they said they wouldn’t take me unless I was a danger to myself or others. So I faked suicide. And for those who will say I was just trying to get attention. You’re right! I desperately needed help. I needed attention and I’m not afraid to say that anymore. I took 2 painkillers and had my aunt and cousin take me to the ER. My mom and fiancé ended up staying with me all 12 hours of that long day.

When the social worker came to talk to me she asked me if “I really wanted to count this as a suicide?” because she was willing to just send me home and “sleep it off.” but I told her I needed help that I couldn’t handle my panic disorder anymore and so she sent me to a place called salt lake behavioral health. I was there for a week. And honestly it was the best thing for me. I wouldn’t really want to do it again and nothing really happened to me, they didn’t really do anything to me. But tony the therapist I had there gave me the best advice and it changed my life and it’s the same advice I’ll give to anyone with anxiety.

The thing with anxiety is that you practically have to see the future to not be anxious. So se t a schedule and follow it that way you can kind of see the future. Personally because my anxiety is so bad I practically have to schedule every minute of every day. But it’s better for me and I hate schedules. It’s going to take some time; I haven’t been great at following it yet. The best advice that I can give personally is don’t get as bad as I got, but if you do get the help you need don’t be afraid of what people will say. I wouldn’t change going the SLBH for the world because I me to the most amazing people but it kind of sucks knowing you needed to go to a mental hospital. We shouldn’t be ashamed but until we kick the stigma on mental illness I understand being ashamed because even now I am.

Next time I will talk about my fun week at salt lake behavioral. I hoped that you like my blog if so please follow.

Song: Am I the only one I know waging my wars behind my face and above my throat? Shadows will scream that I’m alone but I know we made it this far. Kid. – twenty one pilots migraine

Exercise for Sleep or Relaxation

 Exercise for sleep or relaxation

I use this exercise when I am having trouble falling asleep and it has really helped me. Hopefully you won’t even have to finish the exercise to fall asleep.

Lie down, close your eyes and breathe deeply. Breathing in and out softly. You can do this sitting up or laying down just try to get into a comfortable position.

Now try really hard to see the color red behind your eyes. Breath in and out trying to see the color red. Sometime I think of apples or fire trucks, but don’t really focus on item just the color the items are. Clear your mind of everything else but the color red, if you start to think of anything else but the color red just gently pull yourself but to the color red

And when you feel like you’ve really have the color red down try to see the color orange. Breathe in and our trying to see the color orange behind your eyes. Sometimes I think or oranges or cantaloupe but don’t really focus on the items just the color the items are. Clear your mind of anything else but seeing the color orange behind your eyes,  if you start to think of anything else but the color orange just gently pull yourself but to the color orange

When you feel like you’ve got the color orange down move on to the color yellow. Breath in and out trying to see the color yellow behind your eyes. Sometimes I think of lemons or post it notes (sorry I work in an office all day) but don’t focus on the items just the color the items are. Clear your mind of anything else but seeing the color yellow behind your eyes, if you start to think of anything else but the color yellow just gently pull yourself but to the color yellow

When you feel like you’ve really got the color yellow down move onto the color green. Breath in and out trying to see the color green behind your eyes. Sometime I think of grass or limes but don’t focus on the items just the color the items are. Clear your mind of anything else but seeing the color green behind your eyes. If you start to think of anything else but the color green just gently pull yourself but to the color green.

When you feel like you’ve really got the color green down move onto the color blue. Breathe in and out trying to see the color blue behind your eyes. Sometimes I like to think of raindrops or the sky but don’t focus on the items just the color the items are. Clear your mind of anything else but seeing the blue, If you start to think of anything else but the color blue just gently pull yourself back to the color blue.

When you feel like you’ve got the color blue down move onto the color purple. Breathe in and out trying to see the color purple behind your eyes. Sometimes I like to think of plums or grapes but don’t focus on the item just the color the items are. Clear your mind of anything else if you start to think of anything else just gently pull yourself back to the color purple.

Now I want you to focus on your feet and try to relax your feet. Feel and your feet muscles since beneath you. Breathing in and out relaxes your feet deeply and fully.

Now focus on your calf’s and try to relax your calves. Feel your calf’s muscles relax beneath your. Breathing in and out relaxes your calves deeply and fully.

Now focus on your thighs and try to relax your thighs. Feel your thigh muscles relax beneath you. Breathing in and out relaxes your thighs deeply and fully.

Now focus on your hips and try to relax your hips. Feel your hip muscles relax beneath you. Breathing in and out relax your hips deeply and fully.

Now focus on your core (stomach) and trying to relax your core. Feel your core relax all the muscles. Breathing in and out relax your core deeply and fully.

Now focus on your hands and trying to relax your hands. Feel your hand muscles slowly relax. Breathing in and out relax your hands deeply and fully.

Now focus on your fore arms and try to relax your fore arms. Feel your fore arms muscles slowly relax. Breathing in and out relax your fore arms deeply and fully.

Now focus on your upper arms and trying to relax your upper arms. Feel your upper arms muscles slowly relax. Breathing in and out relax your fore arms deeply and fully.

Now focus on your shoulders and try to relax your shoulders. Feel your shoulders muscles slowly relax. Breathing in and out relax your shoulders deeply and fully.

Now focus on your neck and try to relax your neck. Feel your neck muscles slowly relax. Breathing in and out relax your neck deeply and fully.

Now focus on your head and try to relax your head. Feel your head muscles slowly relax. Breathing in and out relax your head muscles deeply and fully.

Now hopefully by the time that you finish your exercise you will be completely asleep or really relaxed. If it doesn’t work the first time I would try it again. It didn’t work for me the first time I tried but over time it works better and better for me.