So much emotion..

I have so much emotion that I don't know what to deal with. I can't say that I'm happy nor necessarily upset. I do have my moments where I'm sad and tears are rolling down my face. At times I am so angry that IF I had the strength to hit a wall and not hurt my poor fingers and hands than I would. And I understand that all this emotion comes with dealing with news and a life-changing experience, but no one ever warns you of how much these emotions take over your body. I wish I was stronger at weak times. I wish I can handle this situation and not feel so overwhelmed. But how? Does anyone really know how to deal? I understand, "take one day at a time", but sometimes that seems like bullshit to me. Until you actually go through a life-changing experience you don't realize that those words are bullshit at times. It's so easy to tell someone that and it's so easy to say "hold in there, everything will work out". While my situation is "working out", you actually have a life! You get to walk without a walker because you don't need to learn how to walk again. You get to drive a car. You can take a shower standing up and not sit in a chair, and when you wash your hair it doesn't take all of your energy out of you. So please think of something else to say than the usual bullshit you think I want to hear. On that Friday night when you are out having a drink and laughing remember, you aren't thinking or living your life with the bullshit phrases you tell me; you are actually LIVING your life. I am trying to read a book and my eyes get blurry because of my medicine. I am so frustrated to say the least, and no, it's no ones fault, but this is my life now. This blog is where I get my emotion out whether you agree or not, but this is how I stay somewhat sane. I am sorry if I offend anyone and I am thankful for all of my followers, but I don't know any other way on dealing with these emotions. I can't just go for a drive or go work out, and that's what I did before when I got overwhelmed.

I remember the emotion I felt when a student respiratory therapist asked me what it was like before my legs were "paralyzed" in the hospital. First of all, I was never paralyzed. But hearing the word "paralyzed" put me into an emotion that I have never felt. It broke my heart and I sank into my pillow and told my dad I was going to take a nap. I couldn't talk. I wanted to cry. But I am able to walk again, but hot damn she needs to learn correct bed-side manner when gets licensed! I have an auto-immune chronic-life disease. It is manageable and I can eventually go into "remission". I will have to change my life and my life style. The first year is the hardest and the treatment that I will be on for 6 months is a type of chemo. It tears me down and I am so sick from it. And after, they will reassess my blood levels and liver (which was affected from my muscle enzymes) if I am able to go on medicines to help maintain this disease. I am 27. And it breaks my heart that I have to go through all of this. I don't know if I'll ever be okay and that scares me so much. This disease is so rare that doctors can't tell me when I'll be okay. How do you deal with hearing that? How do you keep your head up high and hearing "everything will work". Really? Don't tell me that. And I'm sure you really don't know what to say and I understand that, but please educate yourself on this disease. Or talk about the drama in your life because that will put a smile on my face.

I'm scared.

I feel like I've been hit by a truck..

Yesterday when I woke up I was ok and not bad. As the day went on I started to hurt even more. It seems my mornings aren't too bad and later in the day it gets worse. Sometimes around 6ish I get a burst of energy, but yesterday I did not. My whole entire body was burning, I had sharp pains throughout and all my joints were hurting. I took pain medicine as well as a muscle relaxer and it did absolutely nothing but make me feel drugged! I didn't fall asleep until 4:30 am. So today I've been hurting as well and I didn't take any pain medicine or muscle relaxer. Why am I going to put that stuff in my body if it doesn't even work? I am so weak and I am so tired of being weak and hurting. The treatment they want to put me on still has to be approved by my insurance. I don't know what to do if they deny treatment..I don't even want to think about it, but it's hard not to. I just want to be normal and feel better. I don't understand how something can take over your body so much to make you disabled and the doctors not know why or how. It's frustrating to sit here and not be able to have a voice. It's like as if I am sitting in the back room and watching my life pass by, but still being present. Of course I would get a rare disease. ha! I need to smile more and I need to laugh more. On Thanksgiving, I made a joke about my disease, but nobody thought it was funny. Sometimes you just have to. And if you're not, it definitely brings you down.

About a month before I was admitted my arms wouldn't straighten out all the way. I adjusted my car seat to be able to reach for drinks through the drive-thru. I adjusted my Life. I couldn't pick up my niece because I was so weak, and yet I never said anything. And again, I adjusted my Life. So we know what's wrong now, but I don't know how I will feel tomorrow. So everyday I adjust to how I am feeling. I just want to better.

Last night was not a good night for me. My mind was going and my body was hurting. As I laid in bed, I got so angry. Here I am on a Saturday night in bed by 10 pm knowing everyone else is out and having fun. Why me? Why did I get this disease? What did I do to be this sick and unable to live a normal life? I was so upset because there is no reason why. So needless to say I tossed and turned all night. I fell asleep angry.

Today my body is really weak, but I wanted to get out. I'm making my family and a friend their Christmas presents this year. It will give me something to do, but also my way of thanking them for standing by my side during my illness. So when I got ready I decided to put some makeup on. My parents and I went to Lowe's first and I got some of my supplies there for their presents. I used the wheelchair there because the store is way too big for me to walk in. Then we went to the grocery store where I used my walker. My hips were hurting after about 20 minutes of walking. But I did it. My eye sight is getting blurry. It's like a cloud is over my eyes now and everyone has two heads overlapping one another. I'm not sure if it's from the medication I'm on or if the disease is taking over my eyes now. My doctor appointment is a little less than 2 weeks away, and that is when I will ask the doctor about my eyes. It's scary not being able to really see and not knowing if it can be fixed or not.

I am so thankful for my mom and Dan. It's like they are raising a child again. This is the time for them to enjoy themselves and now they are taking care of me. Not once have they complained and instead they are the complete opposite. I don't know what I would do if they weren't in my life or close by to help me. I am making progress, but everyday is different. It's hard for me to make plans because I really don't know how I am going to feel. I don't know if I'm going to ever get the answers that I want. And I don't know how to move on without having answers. It's a constant battle in my head and it gets me nowhere. And then I get upset. And why do I do this to myself?

It is such a beautiful day outside! I went on a nice walk with my mom today. I used my walker and I was able to walk a little uphill. The sky was a beautiful light blue. As I was getting ready for my walk I looked in the mirror and I forget that I'm actually really sick. There is a permanent ring around my eyes and I always look tired. I pull my hair up to get it out of my face and I notice a bald spot. It's crazy how medication can change your features and hair.

I got some really good feedback on the TMA Discussion Board about the pain I was feeling. A lot of doctors don't realize that people with PM will experience pain and not only weakness. So until I get my immune system under control, which is the IV/IG that I will be getting for 6 months, I will experience pain and the burning sensation. That is a total bummer, but at least I know I don't have to go to the ER anytime soon! I'm really looking forward to going to the support group next Saturday as well.

I had such a nice Thanksgiving with my family. Wednesday night I ended up in the ER and not sure if I would be admitted or not. I had my appointment with my rheumatologist and she didn't know why I was having so much pain. My legs felt like they were on fire and I was having sharp pains as well. I was really weak and short of breath. I thought I was relapsing which really scared me. So she sent me to the ER to get blood work done and check my CK Cell level. A normal persons CK Cell level is 100-240, and mine were at 3900 when I was admitted into ICU. I thank God that my CK Cell level was 196 on Wednesday! I'm normal again. So thankfully I was released and got to go home. And now I feel even more in the dark with this disease. Is it normal to have burning sensation? How often and how long does it last? I've been really down lately because I don't know what to expect anymore and I don't know how I will feel tomorrow.

I joined The Myositis Association and found a support group. They are meeting next weekend in LA. I'm really excited to go and maybe I'll get some answers. It's so hard to explain what I have when I'm not even sure what the recovery will be and how it will effect my daily life. So I'm really hoping for some insight on this disease next Saturday. My mom is going to go with me and I think it will help her too.

I had a good day yesterday but I think I over did it. Family and close friends came by after dinner to see me and mingle. I'm hurting today, but it was worth it to see faces that I love. My body is really tired. It's crazy that it takes a day to recover from an evening. I get so ansy when I lay around, but my body unfortunately can't handle the energy in my head. I really need to learn breathing techniques or some sort of meditation to help calm my head and help my body heal.

Cheeky Charlie

My monkey I hold on tight to..

Today is not a good day. I woke up at 4am and didn't get up til 8am. My pain level has increased to almost unbearable. My whole body is weak and won't stop shaking. I'm trying to get some rest, but my mind is going and won't stop. My home nurse made an appointment for me today with my rheumatologist. I'm hoping she has me start my treatment sooner than we planned for.

I hate feeling like this. I'm in a vulnerable state right now and there are no shields to protect me. I have to run errands before the doctors that I was looking forward to doing, but now it's kinda scary. If I put any type of pressure on my body it hurts, even crossing my legs.

My cousin and his wife bought me a stuffed monkey when I was in the hospital that I slept with, and so today he is keeping me company. All of the nurses knew I cuddled with him, and when they made my bed and tucked me in they always had him close to me. I guess it's some sort of comfort and the feeling of not being alone. His name is Cheeky Charlie. I really hope tomorrow is better day..

I cannot believe it is already Thanksgiving week! I am so happy I am home and not in a hospital. Though, I do wish I felt better. The treatment they did in the hospital is wearing off and the pain is coming back at full force. My dizzy spells are getting worse as well. I don't start treatment for another two weeks and so I am really hoping it doesn't get to the point where I can't function again. My family are great supporters and understand that I need to rest even if I act like I don't.

During the holidays, I would always end up falling asleep and my family thought I was "lazy" or didn't want to help. My body was always just really tired! Doing the littlest things would take so much energy for me. Now everyone knows why and they felt bad for always complaining that I was being "lazy". They shouldn't feel bad though. Nobody knew what was really going on with my body and could have guessed this. Knowing now, does answer some questions of why I was tired so easily or why I was in a  funk. I would be in a bad mood for no reason and I couldn't control it. And now I feel like I'm taking crazy pills! My body has been through so much since October 15.

I mean it does make sense all the up and down emotions I have, but geeze I just want to feel normal again! I take one type of medicine to help suppress my symptoms and then I take three different types of medicine to counteract the side effects; so much medicine. Before I wouldn't even take anything for a headache! I feel like I'm a pharmacy at times. My pain medicine only helps manage the pain and never takes it away. They can't give me a higher dose because my liver was effected so bad from the breakdown of my muscles. I just want to feel better and live a life with no pain. I feel like it's always something now and it's never actually a great day.. I'm trying to stay positive and be thankful that I am here and that I have a wonderful family. Those are the faces and smiles that help me get through the day. 

I hate that emotion when you want to scream or cry and you can't or your body won't let you. My hips and legs hurt so bad today and I feel trapped in my own body. I wish my screams would take away the pain or I can run out if this shell.

I'm staying with my sister this weekend because the parents are away this weekend. I wish I can get up and play with them. I'm her fourth child this weekend. Ha I haven't been able to play with them in a long time. I can't sit on the ground and haven't in years. And Dan asked me why I lived this way for so long and why I didn't ever tell anyone. I told him that I didn't want to complain and eventually I would be ok, but it only got worse. I am now learning how to do everything over. And who knows, I could've been misdiagnosed if I went to the doctors sooner.

Maybe my body needed to almost completely crash to save me. I have a chance to start all over. My body will be new to me and so will my life. Maybe this was Gods way of saving me. I wasn't happy and I wanted a new career, but I didn't know how. I didn't know how to be happy. It could be that my body restricted me from doing things that everyone else was doing and that's why I wasn't happy. I need to move forward and not look as this as a downfall. I need to find peace with my disease.

My sister & I

I am on the right. My sister is my rock and helps keep my spirits high!
This was taken a couple days after getting out of the hospital.

So today I am watching movies. Yesterday wore me out! Dan and I spent about 3 hours dealing with the EDD. It exhausted me and I was starting to feel pain the last hour or so. When I woke up today, my vision is now blurry and I’m dizzy and shaky. L Well I’m dizzy every day, but with my eye sight off it doesn’t really make me feel good. Oh and my legs and sitting muscles are super sore and hurt to be touched today.

I miss doing my makeup and getting dressed and staring at myself. Ha I miss feeling pretty. Right before I was admitted I couldn’t even get out of bed because I was in so much pain. I was living with my brother and he doesn’t have a bed frame so his mattress is low to the ground. It would take me at least 5 tries to get up before I actually did. Then, it would take me a few minutes before I could walk 15 steps to the bathroom because my legs and hips would hurt so badly. And I made this normal for me. I figured this pain would go away or my anxiety was getting out of control and taking over my mind. I did get a massage and the next day I was in more pain than I ever was before. Then I figured, oh it will take a few times and eventually it will get better. Ha I had no idea I had such a rare disease! I couldn’t brush my hair anymore and trying to wash my hair was another challenge. Sitting on a toilet hurt my legs so bad. I would then have to figure out a way how I was going to get up. So I sit there, and I think and I try to come up with a strategy how I was going to get off the toilet. And I still never told anyone this. Now, I have a commode that is higher than the toilet so I can sit and get off without my legs hurting. Oh and it has arm handles so I can push off and not have all my weight on my legs. They are still weak and shaky.

I never thought that going to the bathroom would be such a challenge for me at 27. 27! And this is my life right now..it makes me really sad. But I will get through this and I will be ok.

Today is a little harder than most. I woke up and cried. I’m still trying to figure this out. I may never and that’s so hard for me to understand. I’m the type of person who always needs to know “why” and with this I may never know “why”. I am really lucky to have such amazing family and supporters, but even then I feel like I’m doing this alone. I know I’m not, but this is my body and I’m going through the pain. I don’t want anyone to feel bad for me at all! This is just something I’m going to have to accept and live with. Some days are really good though and those are the days I need to move forward with. 

I have been a hairstylist for 6 years. About 4 years ago I started having problems with my hands. My fingers wouldn’t close all the way to a fist and they hurt. My wrist were always swollen and you couldn’t see my knuckles or veins. The chiropractor I was seeing at the time told me I had carpel tunnel. I believed and would get my arms worked with acupressure 3x a week to help my hands. It helped but they were always swollen. I didn't believe in getting the surgery and I am so glad I didn't.

In the hospital, about the second week in, I noticed my hands, and they freaked me out because my fingers were so skinny! I can see every vein and my knuckles. My hands weren’t white or puffy, but they looked so weird to me! When my mom came to visit I pointed it out to her and she told me “this is what my hands are supposed to look like.” I couldn’t believe her because they freaked me out so much! It’s been 4 years since my hands and fingers have looked normal. That’s when I realized I’ve had this disease slowly take over my body and not ever realizing that I didn’t have carpel tunnel. I got to a point where I couldn’t open a water bottle because my fingers hurt so bad. I now have learned that I have no muscle in my hands and fingers. Slowly I will regain that muscle, but it might take a little longer than the rest of my body considering it was 4 years ago that this started. I adjusted my lifestyle to my hands and never expressed how much they actually hurt me or how difficult it was to open a water bottle. I know now that I need to speak up when something hurts or doesn’t feel right. 

So I’m going to start this off by introducing myself. My name is Hayley Warm and I have recently been diagnosed with Polymyositis. I am 27 years old and my world has just been turned upside-down. I was admitted to Redlands Community Hospital on October 15, 2012. I will remember that day the rest of my life.

I woke up that morning not being able to feel my legs or being able to stand. I spent the night at my sisters and I had to crawl across the hall to the bathroom. I had a high fever and my whole body was completely swollen. My sister had to help sit me on the toilet. I was so weak and I thought my legs were paralyzed, but then I was able to move my toes. Phew! Still, I couldn’t stop crying and I didn’t understand or know why I couldn’t move or feel my legs.

 Ashley, my sister, called Dan, my step-dad, and brother, Brad. They came and picked me up and took me to Urgent Care. From Urgent Care I was rushed to the ER by ambulance where I had a room waiting for me with my own nurse and doctor to figure out what was going on. My blood pressure was 80/37 and whatever they did it wasn’t going up. I was starting to have kidney and liver failure as well. They were taking massive amounts of blood for testing which then put me into an anemic state. The doctor thought I had a reaction to a medicine so they were going to do a procedure that they’ve never done. I was then moved to a room, for this procedure, because only one person does this. After being taken there, a doctor from ICU came down and stopped them before doing so. Dr. Nelson helped save my life and for that I am so grateful! After Dr. Nelson stopped the procedure from being done I was taken to ICU. From there it is a blur of what happened. I remember having at least 5 doctors around me and a nurse trying to put in IV in me. I was so swollen that she couldn’t find a vein and I remember just crying because she was hurting me every time. Finally, Dan made the decision to put a main line through my jugular. The nurse then prepared the room for the doctor. It hurt so bad and he had to sew it in. Usually patients are knocked out for this procedure, but because of the condition I was in they couldn’t wait for that. I remember crying so hard because it hurt so bad and I was so scared at the same time. They used that IV to draw blood and give me my medicine. At the end of everything that was the best solution and made it a whole lot easier for everyone.