Realizing my surroundings...

Yes my family has been here physically for me since last October and I am so grateful for that. But I'm different from them and always will be. I can't just move on, this will be a process for me and it may take years or months or weeks, either way they don't understand why. It shouldn't be an understanding of me, but just emotionally be there. And when I cry just let, don't tell me to get over it or it's time to move on. I just want you to be there while I figure this out my way. Because in the end that will be the only thing keeping me alive..I'm just trying to figure this out, I'm not in denial anymore, but I'm working this out like a puzzle and only I can solve it. I can't think too much about it because then I'll get myself twisted up and backwards. Please just let me solve this mystery my way. 

...

Your body is supposed to protect you from virus's and harmful bacteria, not make you weak. Not make you so tired that if you wanted to get up it would be a chore, and then you can't accomplish what you wanted to. So you're back in bed and you have a system and this is interrupting it. I hate crying, it's such a waste of time and accomplishes nothing, but makes you look weak. Good Night Universe..

To Clarify..

Yesterday's post was all about the strangers that have come into my life and had made a huge impact that makes me value my life more. I would like to clarify that my family means the world to me and I don't like doing anything that will upset them or look at me different because what they think really impacts me and my goal is to make them happy and think that I'm a great daughter, sister, aunt and friend. I know that I can't be everything they want me to be because that's just not human. Like I was told the other night, I'm beautifully broken and there is nothing wrong with that. Some people are just born and triggered different, but it doesn't make me a bad daughter, sister, aunt or friend.

I've realized that my mind is my own worst enemy and not in a good way. I come up with these excuses and then I justify them that they are ok and that I'm fine when in reality it's not ok and I am hurting, but that's ok I just have to take better care of myself. My mom and I are trying the holistic route for a couple of months to see if it will work and I can get off of all pharmaceuticals. Let's cross our fingers!!

Last weekend I met people who have been "rooting" for me this whole year that I did not know, but they knew my story and prayed for me. I thought that was pretty amazing! And for the people that I haven't met, I want to thank you as well for adding me into your prayers and thoughts.

I am driving now. I traded my car in for a crossover because my car was too low to the ground and I had too many bad memories with it from being sick and not realizing. I drive myself to school and back and to my local doctor appointments. I drive about 4/5 days per week and not too much. Traffic still completely freaks me out along with big vehicles!

Today I get to spend the day with my brother and I am so excited because he really is my other half besides my cousin Justin. I missed bonding with my brother and we can be completely honest with each other and know our hearts are in the right place when saying it, even if it stings a little bit. But I love him and he loves me and I'm completely looking forward to today!!

I hope everyone has a wonderful weekend! xo

October 15..

So Tuesday was my one year from being admitted into the hospital..I really wish I could say that I've enjoyed this and being 27 was my best year yet, but then that would be a complete lie. I am happy that it wasn't all in my head and that the restrictions my body was facing was because of some crazy and weird disease. I didn't even know your body is capable of attacking itself like mine did, but I guess in this Universe everything is possible. This year has made me question everything in my life including my humanity. One thing is certain, you meet certain people during your life in which you need them or their outlook the most. You may even question their lifestyle but answers some of yours. 

My family is very thankful for this day, October 15. I consider it a horrible day but then again it could just be my outlook on life right now which is nothing great. I want to be happy and I want to laugh again because I do have a great laugh and great humor! But I've lost it in this whirlwind of medicines and side effects and just having to deal with my life different now. For the longest time I have fought with the idea of just being sick and now I have to realize that I am sick and it won't be forever and I really hope I won't be taking medicines the rest of my life but that isn't guaranteed..I have to remember that I will be okay and not to let this disease take over my life which it has the past 8 months. 

 I have been to my hell and I'm still in it's grave. But now I have the choice to crawl out of it or lie in it and make myself comfortable..I really want to chose option A and I'm doing everything I can to take my life back. I still have weak moments but the conversations I have with strangers that become permanent in my life makes me want to hold onto my life even tighter.

Today..

Today has been a good day so far. I woke up with a clear mind and happiness in my heart. The pain isn't that bad which means I can deal with it without putting a fake smile on. 

Yesterday, was really I mean really hard for me but I did everything so the evil couldn't take over. This is definitely a harder road that I'm going down. My mom asked me why some days are harder and if I knew that answer they wouldn't be happening. I believe it's the universe testing me. Obviously I am still here for a reason when I have gone through hell and not quite back from it yet, but I won't let it define me. I've always been an individual and I plan on staying that way. I'm slowly finding myself again and that's with the help of family but mostly my friends who have never judged me or thought different of me because of my decisions. Lifetime and soul friends is what I would like to call them. They go with my crazy ideas and plans and when I change my mind they don't tell me "I told you so" instead they ask what's next! Definitely they are my back when I have days like I did yesterday. 

But I wanted everyone to know I'm having a good day so far and it may turn bad very quickly but at this moment I'm enjoying my life. Now there's a first in a long time.

And it's been a while..

First, I would like to apologize that I haven't kept any of you in the loop for a while now and second, I will try my best to stay more active with my blog. Thank you to the followers who check my page periodically!

It has been a crazy emotional ride that I wasn't ready for and it is so easy to tell someone to stay positive, but until it is your body, mind and soul going though the changes and being so sick, it's not that easy. And I had really good days, but in the end the disease eventually took over me. My thinking was completely clouded and I was completely depressed. My family new I was, but I'm really good at hiding the truth and not showing everything. In the end, I couldn't handle it anymore and the pain was eating me alive. I could only keep a smile for so long until the tears and heartache would take over. I would message my cousin every night to let him know I was still alive, but I had no intention of actually staying alive. At that point, where I couldn't handle or fake it anymore, I checked myself in. I needed to separate myself from my surroundings and get help. I learned a lot in the three days I was there. I don't give myself enough credit and I don't believe in myself. I have a better therapist now that I believe can help me with life. I'm ready to fight and take my life back.

I had the miracle treatment in April and I don't need it this month which is so positive and amazing! I will be checked out in April if I need it again. My muscles are growing back and I am getting stronger every day. Music has saved my life so many nights and I still depend on lyrics to get me through the day. I am driving now, but not too far. I traded my jetta in for a CR-V so I can slide right in it. I feel safer in it. I had too many bad memories in my jetta from being sick and not knowing it. I am taking a class at the Valley College this semester two days a week. Two classes would have been too much in the beginning, so I am hoping I'll be able to take more classes in the upcoming semesters.

I have amazing friends who I know will go to their grave with the stories and problems I have that I want no one to ever know. I am so thankful they are in my life and has never given up on me! And my cousin, he deserves the world and definitely an award.

I need to remember that I am beautiful and I can conquer the world as long as I put my all into it. It still isn't a smooth ride but I'm not going to give up this time. I am here and I am staying. I promise I will keep everyone informed with what is going on with me as well! Oh, my hair grew back curly and I am so in love with it!! (My hair was completely straight and I've always wanted curly hair!!)

Til next time, have an amazing weekend and hug the ones you love. A hug means a lot more then you may think or feel.

..

I need to be saved..from my mind, from my life. I'm really sick right now and it completely sucks on top of everything else. I feel so alone in this world and I feel I'm an empty shell. I'm fragile, I can break so easily but yet others still say what they want and little do they know it's breaking me down and closing me off and not making things better. I know there are so many others out there with this disease but I wish they were my neighbors. I think it would make this a whole lot less lonely. I talk to a few people in different countries and that's keeping me busy and I feel closer to them than anyone else. They understand, they've been where I am. I think about when I was in the hospital often lately, I had no idea the recovery would be so difficult and long. I've been doing more research on my disease and the antibodies I have and I haven't found much good news. I have a high chance of lung disease now which I do have changes to my lower part of my lungs, not sure what that means. 

I just always thought my life would be more fulfilling and happy. This sucks..

It's been a while..

I have been really low lately..I am on anti depression medicine now and I'm hoping it helps. This disease really takes a toll on all aspects of my life and the prendnisone doesn't help! My body is definitely put of whack! 

I've made some friends who have the same as me. One lives in Australia and we email each other every day and the other one lives in Italy. My friend in Australia sends me gifts and I really want to visit him next summer..I hope I'm ok by then. 

I took two classes in summer school at one of the junior colleges and I got an A and a B! I was super surprised and really proud of myself. I'm taking two classes this fall as well. It's a great distraction and helps me to not dwell on the negative of this disease which is very easy to do. My body still hurts and I'm still not that strong and I have my days where I can't get out of bed, but I am hoping to have more good days then bad soon. I know it's hard on my family especially when I'm upset. Right now the disease is controlling my life and I'm not sure how to be happy again. I'm hoping I find my way soon because I really hate being sad, but it's easier said then done and my body hurts emotionally and physical. It sucks..

I'm getting out and making plans so I'm keeping busy. And I'm obsessed with the movie Pitch Perfect right now and it helps me forget everything I'm going through so I watch it every other day!! 

I hate..

I hate having to swallow my tears every minute. I thank the pills/medicine that help me forget I'm in pain. My anxiety seems to be getting worse and I think because I'm at a stand still right now. Nothing has changed in the past couple of months. I was making progress and now I'm stuck in this unknown territory. I go through phases where I'm happy and I'm going to be okay and then my anxiety kicks in and I'm so sad. I don't get it. I want to be better and I want this to be part of my past, but unfortunately things don't happen that quickly. 

I'm doing really good in school which helps the days that I'm able to focus on that. In the back of my mind this week are tears..why? Why do I have to be so sad and why can't I control it? I savor my pain medicine bc they don't want me to become addicted but I still hurt. I don't want to be a complainer either so I don't say anything. The prendnisone is now making me fat. Which I've always been so self conscious about and that just adds another thing to my crazy head. It sucks. I look in the mirror and I am so unhappy it hurts. I wish I could be happy for other people but when I'm so sad I hate that they are so happy and it's so hard for me to congratulate them. I don't wish what I have on them by any means but I want to be happy and I want what they have and it hurts inside so much that I don't know when I'll get that. So I'm sorry if I'm quiet around you but I'm so jealous of what you have I'd rather not speak. I'm just hurting and I really don't want to hurt anymore. Last week I was doing so good and then these emotions hit me like I ran into a brick wall. I'm so tired of faking it but there's nothing that can be said so that's what I do. I smile and I pretend that I'm ok bc everything will be ok. When? I don't know and you don't know so don't feel bad, I'm not asking for you to give me a miracle. 

But I certainly do Not want to be on antidepressants and my family is pushing for them. They scare me. I'm already on so many different medicines that those are the last things I want to be on! I may be weak at times but I'm not trying to kill myself or have I tried. I can do this. I can. I will cry every night but I know I can do this. And it's so scary not knowing what tomorrow will be but I will be okay. My dr has high hopes and that is what I am going to go off of. And until then, if I need to take some medicine to not feel the pain or what's in my head then I will and please don't judge me bc that is what will help me until I get over the bump in the road. And I'm sure my mood swings can be difficult to deal with, but I want to get better just as much as you want me to get better. So we don't need to talk to have an understanding. I just need a few good cries and I will be okay.

Chemical Imbalance..

That's what they tell you when you're depressed and your body hurts. Antidepressants will help me and my body doesn't really hurt, it's all mind over matter. And anxiety doesn't really exist either. Everything is all in my head. But I somehow need to be on antidepressants and I just feel that's me being weak. Like I'm not strong enough to get better on my own. Like these tears don't mean anything and I can't handle this. I'm not weak and I've always been able to figure it out so no I don't want to be on antidepressants. I wish I can be normal and have my own place and take walks. Good news is I got this young, that's what I always hear. Doesn't make it any better. And so ya I may be in denial still and very angry, but the only reason I would get on antidepressants is to make everyone else around me happy. Because I'm not weak and being on antidepressants will make me weak. Maybe that's a plus so my outgoing mouth could be numbed. I'll be perfect and go along and my pain will be gone because since the two are connected and all. Man, I can't wait! 

I apologize to the ones I've hurt, my blog has never been that intention. I don't have any other way to get it out and I sometimes seem to cross the line. So again, I apologize to anyone I've hurt and I thank you for following my blog.

I Accomplished..

I had over-achieved more this weekend than I thought I was ready for. After reading The Secret, I realized that I need to stop worrying about the little stuff and to push myself. There is a reason why I am working with the best doctors and to leave it up to them to get me better. Mentally, that's my job. So this weekend was the first time I took a shower without using a chair! I need to start pushing myself and stop being so Afraid! It did wear me down a bit, but who cares! I did it and that's all that matters. Each shower is going to make me stronger, mentally and physically. I really am proud of myself.

So I decided to go to the movies with my cousin and his family. I completely forgot about the stairs! The movie theater close to home doesn't have a lot of stairs so when I remembered I thought no big deal. But, they decided to go to the theater in the town next to us which has bigger screens and a better theater all together. So as I start to walk up the stairs, I can feel my body starting to change. I was breathing more heavy, tears were rolling down my face and my legs were getting harder to lift. My cousin's wife was so supportive and only using encouraging words to help me up. My hips were starting to really hurt and the water works were coming at full force. I made it. I sat down and took some medicine (thank goodness I just picked it up that afternoon). I sat there and started concentrating on my breathing and talking all the nonsense out of my head. I did it. I am ok. I couldn't move nor did I want to. My cousin and his wife ended up sitting the row behind me and I sat with their daughters. I didn't want to walk up anymore stairs. So throughout the movie I can feel myself tense up and I needed to breathe and relax. So the movies over now, and I am already thinking how I am going to get down? I can do this. I Can do this. So I took my medicine before I attempted the stairs, but the tears had already started. My breathing was my main focus at this time until my medicine kicks in. I waited for the theater to clear out, but it felt like everyone wanted to watch the credits. I couldn't let them change my focus. OK, I was ready. I held on to my cousin's arm the whole way down, one step at a time. We took a few breaks and I wiped away any tears that could change my thinking. I finally made it! Man, that was the scariest obstacle I have come across! I am so Thankful that I was with my cousin and his family and no one else. 

I need to work on this anxiety shit! It is no joke!! haha But I did it. I need to be proud of myself and look at this as a turning point in my recovery. So I definitely need to work on getting my hips stronger. 

Today, I am relaxing and "Remember to Remember" that I am in a good place and only good things will happen from here on out. I signed up for summer school and I start in 2 days. I am so excited to be starting something new and looking forward to waking up to something. I'm staying Positive and yesterday was a lesson and I conquered it. I need to be proud of myself. I have come such a long way and there will be other obstacles that I have to come across and remember to remember I will be ok and that I can do this. 

The Secret..

A good friend lent me the book The Secret. It's all about positive thinking and believing You deserve everything you want as long as you believe it. The book is so inspirational that I'm really going to try my hardest to follow it so I don't have to get on antidepressants because I really don't want to. I've also always forgave people so easily and let them back in my life when really they turn out to be such a negative affect. I've decided to not let them in my life when it is only convenient for them. I won't say anything to them because that's just mean, but I'm also not going out of my way to have them in my life. I am going to have my mom read The Secret after me so she can keep me on track. 

I drove yesterday for the first time since October! I'm trying really hard to not look at the negative sides of it and just being proud of myself! I am always so hard on myself and I really should give myself some slack. I've come such a long way and I have made so much progress that I need to concentrate on that rather than what I have not done! 

I have to remember people come in your life for a specific reason and you never know why until something has happened or until you learn from the experience. So again, I need to stop expecting so much out of me and realize everything will fall into place as long as I believe it will. Today will be a good day! And next week I start school which I am soo excited for and nervous. I will do great though, I just know it. And I will be happy and I will find my happiness with someone who respects me and will stand by my side no matter what. Believing is everything to a happy life.

Irritated..

Today I had a counseling appointment. I talked about the people in my life that I feel make it hard for me to become a stronger person. I try to be an open book but by the end of the day I am telling everyone what they want to hear. I'm not trying to blame anyone for who I am, but maybe putting suggestions out there and ideas on how to cope better. Because I've lost who I am. My anxiety and depression has taken over my whel being. I don't want to fall asleep anymore. I'm afraid that when I wake up I'll still be in the same amount of confusion and pain. So I suggest to family members that I could be because of other reasons and they shoot those ideas down before even asking why I would think that way. It's hard and it sucks because I feel so alone in this process. I just want at least one person to understand me or try to. I don't know how to be happy again and I don't know how to quit the anxiety. I'm so tired of them asking "why do you have anxiety or why is your balance off?" My best answer is "I don't know, why am I sick?". 

People say writers come up with their best material in the middle of the night because they don't sleep and their brains don't turn off. I completely understand that statement. I just wish I wasn't part of that category. 

I need to stop having such high expectations from the people around me, but I feel if I live my life how I want to then I will be judged for it. I won't be good enough to fit or live in their bubble of life. But do I really want that? I'm kinda stuck where I am. I still technically can't take care of myself and when I try to make plans I'm told I'm not ready. I don't want to live on the crutches of other people and apparently I'm not ready to hold myself up. If I didn't care so much or didn't have a conscious, I wouldn't be here anymore. This blog would be unfinished and I would have never found who I wanted to be or who they wanted me to be. So what do I chose?? This fake smile and figuring it out on my own because I can't have an honest conversation with someone I trust or end it all together? God I know I'm stronger than this but all these road blocks you are putting up is making it that much more difficult to find the happiness I want and that I care about, not them.

It's been too long..

I haven't wrote anything in a while because I haven't felt very well. A lot has happened and I need to update with everyone! I was able to get the new treatment (the one that isn't FDA Approved, Rituxin) and my Myositis is finally getting under control. I have much more energy now and I am able to get out of the house more. I am still in a lot of pain so the pain specialist is working with me on that. I am now only working with the doctors in LA. So I take a trip every 3 weeks until I get everything under control. Dr. V has lowered my prendnisone to 20mg which is amazing!! His goal is to have me off of it completely by the end of the year. He has also ordered me to pool therapy five times a week. His goal is to gain 80% of my muscle back. He believes I am in so much pain because I lost so much muscle. So hopefully as I gain it back I won't be in as much pain! I was very active this weekend and so today I am hurting tremendously, but it was worth it. It was the first time I was able to play with my nieces and nephew again. 

I started seeing a counselor to help me with my anxiety and depression. I'm still sad a lot and trying to figure out how to cope with my new life and circumstances. I also reconnected with one of my clients and she has introduced me to her church. I think going to church with her and her husband will really help me too. I'm still asking for prayers and I started to pray as well. My body and mind are still trying to adjust to everything and I have to trust God and his intentions, which is so hard! But I've started surrounding myself with positive people and people who want to see me beat this.

Hanging in there..

So things are getting a little better. I've learned that I can't concentrate or think what my life has come to. If I do, I get really sad. I have to move forward. It's really hard, but I need to. I went to the Support Group again on Saturday. I had the worst anxiety on my way there. I was shaking and crying. But once I got there my nerves started calming down. I was able to relax once I realized all the attention won't be on me since they know me now. It went really well and I look forward to the next meeting. However, I am glad it is only a couple of months because I don't think I can do every month. Though Richard, who was in charge, passed away the beginning of March. It was my first experience of death with this disease. He did have other issues and age was a take in it as well. It still breaks my heart. I am still a sad person, but I hide it very well. I have wonderful friends and family that do everything to keep me afloat and my spirits high.

I started a gofundme account to start paying my medical bills. My disability runs out next month. I applied for permanent disability, but I heard it is very hard to get and you usually get denied the first time. Which is really scary. Please check out my link and help share me story!!

                                     gofundme.com/2ei8hs

Any support is not too small!! I hope everyone has a great week/weekend! I have my IVIG treatment tomorrow and Friday. Ugh! I hate getting it done because it wears me out! I will hopefully have good news about getting Rituxin soon. Which is the other treatment that isn't FDA Approved. I am supposed to have one more IVIG after this week, but I'm really hoping I don't.

My mom is having a conference call today with a nutritionist who works with people who have autoimmune diseases. I started the green smoothies and juicing about 3 weeks ago, but I still love my sugar and ice cream! And they are the worst for me!! So I hope she has some great alternatives or some exciting new ways to eat. I have no choice to change so I need to start looking at it with a positive attitude. I did read that frozen bananas through a food processor taste like soft serve ice cream so I need to try that! Too much banana makes me gag though! So I need to be careful with that. My mom is eating with me so it makes it easier and she keeps up on me which I need to. I wanted to move out at the the end of summer, but there is NO way that is going to happen. It sucks. And it won't be for a long while..

I will keep you posted on my treatments and what the next plans are.

I apologize..

I'm sorry I haven't kept up in a while, but this disease has really taken a toll over me. I'm extremely sad now and I'm thinking the worst. I don't know how to think positive anymore. I want so many things out of life and I don't have the confidence anymore. It's really pathetic, but I can't even stand long enough to make myself a smoothie. I hurt. I hurt really bad.

My doctor in la is asking for a rush order for the new treatment. I have my IVIG next week and I'm hoping it is my last. I'm not getting stronger and I'm still in so much pain. I try to keep my head busy so I don't think. My family is doing everything they can to keep my spirits high but it's so frustrating living in this body. Everything I love to eat, I cannot! It feels as everything I am and was is slowly being stripped away from me. I am being formed into something new that I have no choice of. I don't think anyone would be able to handle or would choose to be part of this life. I am afraid I will be alone forever. I cry a lot. My family tells me this isn't a forever thing, but I don't even know what tomorrow will be like. I tell people I'm doing good and I smile but inside I'm hurting more than I can even explain. I'm sure people are tired of hearing that I'm having a bad day or that I want to give up and I can't do this anymore and so I lie. I tell them what they want to hear. I'm afraid to sleep. I'm afraid to close my eyes because I don't want to wake up the next day in pain. I want to be done with this. I still don't want to admit this is my life. I just don't think I can handle it.

I am afraid of life.

I'm over it..this smile is officially Fake..

My body hurts worse now than it has ever have and now it's my whole body and not just legs. Maybe I just recently got pm and these other diseases longer?? I am so sad and I don't know how to pretend or how to actually be happy. I don't know if this will ever become easier..and what if I am that odd percent that will have constant flare ups even though I am young. So far I am that odd in my blood work. I get a breathing test done and my chest hurts more than it has ever hurt. I would have been ok not knowing my lung capacity. It hurts so bad like never before. I hate all these tests. I hate being alone. They don't understand how bad I actually hurt. I can't scratch or slightly pinch on area of fat (its habit) without hurting and hurts after. I feel like my family doesn't get it. I don't want to be dead but I would rather know a purpose of why this happening to me. Maybe I'd feel better if this wasn't a chronic illness and there is an end. I don't know anymore.

I was on the verge of a panic attack tonight..I did what I only knew would work. I took more anxiety pills than needed (way more gradually) and sat under a hot shower for a while. I'm not proud of taking more pills but crying only made it worse. I guess I've been holding it in for too long. I don't feel any better, just getting numb. I hate my life.

I don't like coming on here and complaining but these are my emotions at the time. I have two IVIG treatments left. Then what? They still don't know what is going. I really hope they do!! This pain and sickness has takin over my physical and emotional stability..

I wish I had good news to share but unfortunately i don't. :(

How I'm feeling lately...

So over it..

I just always thought my life would have been much better than this..

Side Affects..

So I've been feeling horribly nauseous for about two weeks. At first, it was only at night. Then, the past week it would start earlier in the day. My stomach would be completely bloated with gas and would turn hard as a rock. It hurt my chest every time I burped and it tasted like some sort of nasty chemical. Then, to top that off, I started sweating profusely on my face and neck. I was getting grossed out with myself. My mother and I narrowed it down to the fibromyalgia medicine I started about a month ago. So yesterday I called my doctor and told him I needed to stop taking the medicine because the side affects were too much to live with. I have been so uncomfortable the past couple of weeks. So he let me completely stop. So this afternoon when I woke up from my nap, I had the worst pain in my chest and ears. Well, it is the left over gas from this medicine that hasn't left my body. I don't feel as nauseous as I have this past week so that's a plus. You never know how you are going to react to a medicine until you tried it, and unfortunately I have a feeling it will be a hit and miss for a while until we really know what my body is doing and what it can handle.

I cheated last night. I have been doing so good not eating any sugar! I came home from a dinner date and made a chocolate ice cream malt! It was so good! I have to let my doctor know on Monday that if my next glucose levels are high that is the reason! I couldn't help myself..I have no one to blame but myself.

Later today I am spending some quality time with my brother Brad. I am really looking forward to it. We have always been really close and ever since I got sick I feel we kind have drifted apart. So I'm really excited. I've always said he was my other half.

Tomorrow me and my mother are getting our nails done. We are way over due! My toes never last which is really weird because I don't do anything crazy. Then dinner with my little brother. This weekend will be good for family time because I'm already freaking out about the test results that I'll get on Monday. I always tend to over work myself before doctor appointments and the week of my IVIG. I know I can handle anything, but I'm still walking into the Unknown which is really scary!

#TRUTH

I haven't been sleeping at all lately. Last night I was having really bad nightmares and thought I was in another room and someone was in there with me. Then I would wake up. My hips hurt really bad throughout the night. So every way I laid, I was uncomfortable. I hurt and it sucks. I don't want to be dependable on my pain pills, but I hate hurting. And I hurt in ways I never knew were possible. I have a burning sensation, a skin tightening sensation with needles attacking my body and my muscles ache to wear i feel like they are going to fall off. So I take four different types of pain medicine and my joints still hurt. I want to be a baby and scream and cry and throw a tantrum. But in reality, we all know I can't do that.

I have a friend who disappears on me every six months or so. It never bothered me before because I had a life and was busy. I figured they just got caught up in their life. This time, I took it to heart. This time I'm sick and they are telling me that they care for me and will do anything I need. (Which I hear that from a lot of people, but I really believed it from them.) And then they disappeared again. That's not a friend. Please don't show up in my life again if you plan on disappearing again. I am not emotionally stable right now and I don't need to worry about when I can count on you. I need to worry about my health and what treatment is next. I need to get better.

I give out Trust like candy on Halloween. And maybe I shouldn't. Maybe it's my fault that I get burned by people so many times because I trust so easily. Who am I to judge to say that you don't earn my trust. Maybe I'm too weak to be alone. I don't know. And I don't think I will change. I love getting the opportunity to meet new people and giving them the feeling that they can trust me. I want people to feel comfortable with and around me. Whether it is a business and/or friend relationship.

My client Stacey that reached out to me a couple weeks ago is now in my life forever. I look at her as she is my Angel. She is Catholic. I was raised Catholic, but my parents never pushed it on us. I started losing faith a couple of years ago. While being in the hospital a lot of people prayed for me. I realized that saves people and keeps them sane. If Stacey reached out to me a couple of months ago I don't think I would have been open. But I am now. And I am so thankful for all the prayers because I honestly think that has kept me sane as well. She bought me a rosary that I put in my pillow that I sleep on every night. I feel safe knowing I'm laying my head on it before I shut my eyes every night. She is picking me up today and teaching me how to make enchiladas and I am so excited! I feel that Stacey is an old soul. She is an amazing Woman and I am so lucky to have her in my life. She understands what I am going through and it's so nice to have that. And now she has someone she can relate too as well. And there is that word again. Trust. I gave it to her without her even having to explain anything to me. She gave it back to me.

On Monday I have four doctor appointments. Two are tests at Cedar-Sinia and two are appointments. I will get my results back from the blood work Dr. V did. I'm hoping he can pinpoint what I have so we can have a plan in action. Then next Thursday and Friday is my fourth IVIG. I hate getting that. I have a few visitors coming already so that's nice to know. Hopefully I can sleep the first half again.

I'm drinking black coffee for the first time since being sick. I forgot how Amazing it was. I still can't  have sugar and that has been so hard! Especially since Dan bought me chocolates for Valentine's Day. So I cheated and had a few pieces. Now I'm telling everyone in the house to make them disappear!

I fainted yesterday. My blood pressure was really low and when I stood it must have lowered more. I'm ok, I twisted my ankle a little, but it only hurts if touched. My mom was home and helped me up. I still have no strength to lift myself up. The parents have now cancelled their plans for the weekend in case it happens again. It makes me upset and they tell me it's because it's too cold and that's the reason why, but my mom saw how upset it made me so I think she's covering the truth up. I want them to be able to leave and enjoy themselves. I just thought I would have the strength to lift myself up by now. But it's apparent I don't.

Please visit my website and support me.

hayleywarm.nerium.com

It is my only way of making any money to pay my bills. Click on 'Preferred Customer' and sign up! This product is amazing and I stand by it 100% !!

My follow up with Dr. V..

Yesterday was my follow up appointment with the specialist in LA. He gave me a lot of information to digest. I have all my faith and confidence in him so I'm trying not to freak out or over think anything. He believes I have Dermamyositis and not Polymyositis, but I don't have the rashes that comes along with Dermamyositis so it's not adding up. Also, he believes I have Lupus overlapping the Myositis and along with Sjogren Syndrome. He ran even more extensive blood tests and ordered me a high definition CT Scan of my lungs and brain. He also ordered a breathing test because I get short of breath a lot. I have been in a tremendous amount of pain this past week so he gave me some really good pain medicine to help me function throughout the day.

I am trying to stay positive. The IVIG hasn't helped, but it is keeping my CT blood count down and keeping me stabilized. He wants to start me on a treatment that isn't FDA Approved but has an 85% success rate. He is also running tests to make sure I won't get any of the side effects. I will find out the results in two weeks from the blood tests. So yes, a lot to take in!! I have a great family and support team and Dr. V is a great doctor.

I have my first Nerium Real Results Party tomorrow and I'm really excited for it. This is something I can do with my mom and sister. I'm ready to feel like I'm part of society again.

I hope everyone has a great weekend!

It's 4:30 am..

I can't sleep. I'm in so much pain that it hurts to breathe. I can't relax which hurts my jaw. I don't understand why I'm in so much pain. I'm not understanding this journey and what it will teach me. I am noticing that I am beginning to open up more and allowing people in. I've always had so many walls up because I was afraid of getting hurt. But I have learned life is too short to live that way. I have a better relationship with my family now. I enjoy spending time with them and I look forward to dinner. Eating with my mom and Dan really completes my day.

I had a client reach out to me yesterday who has been battling lupus for three years now. She doesn't have the support from her friends and family like I do. I offered to go to a support group with her. Knowing that she has me when she is feeling weak or sad really makes me happy. I want her to know that she isn't alone and that I will always be there for her. I definitely have opened my heart out to others that I wouldn't know how to before. I realized just being there helps someone. You don't need to say anything as long as they feel safe with sharing their struggles, you know you are doing something right.

I go see Dr. V in la on Friday. He ran some different blood tests so I will get those results. I am also going to ask him about the pain and if he can help me out in that department. I have three treatments left. After that I switching over. My doctors locally are a joke. It's sad to know that they don't really care about the patient and they treat everyone the same. I think my other doctor gets paid to write prescriptions because he completely contradicted himself. It was a waste of appointment and it wasn't a good day for me to be out. At least I know now.

I am starting a new venture and I am going to be selling Nerium now. Please support me. My website is: hayleywarm.nerium.com
This is my only income coming in because I am unable to work. I swear by this product and it is amazing!!!

Weeks Update..

The appointment with the specialist went really well! He was very thorough in his exam and asked many questions. I was very happy and felt very confident in him. I am going to have him work with my doctor right now until my treatment is over and then switch to him. I am in the middle of treatment so that is why I don't want to switch right now. I also found out I have fibromyalgia and acid reflux. So he gave me new pain medicine to help with that. My body doesn't feel like it is on constant fire anymore, just at night a little bit.

I have lost a lot of hair and I will continue to lose more. So my amazing parents bought me a wig yesterday. It looks really natural and makes me feel better about going out. I feel really pretty in it and confident. It's long and voluminous! It's closer to my natural hair color with highlights in it. I love it!

I have treatment again next week. I'm ready to start feeling better. I feel like lately I have more bad days than good. And I am always so tired..I need energy! Dr. V (the new dr) said we won't know if the treatment worked until having 6 months of it. Next week will be my half way point. He also noticed I lost more muscle than I realized and his main concern is to get me strong again.

The pretty things..

When my hairstylist, who is also my good friend, was doing my hair, we talked about how I notice things in people and in life with a different outlook. I believe that our purpose in life is to find that one person who completes us and mate. Whether it's the same sex or opposite sex, we are here to mate! Before I was so choosy and picked all the wrong guys and now I can see the purity and generosity in someone else's heart. I feel I have a better judgement on who is in my life and who I will allow to be in life. I took those things for granted before pm and now I refuse to.

After this last IVIG I have had the worst stomach aches! I feel like my body is filled with gas. I burp and it hurts!! And it taste like a chemical. I hope it goes away after my next treatment.

I am now having joint pain that seems to keep me up all night no matter how much medicine I take. :( Tomorrow I will see the specialist in LA. I'm looking for some answers and I hope to get them! Also, if I'm on the right track to getting better because I believe my doctor doesn't know this disease or wants to try and understand it. Given I'm her only patient with this, it is still frustrating on my end that I know more about the treatments than she does. :/ I will let you all know how that appointment goes!

One day at a time..

The past couple of days I've been really exhausted. My body seems very worn down. I am not sure if that is apart of the recovery stage to this disease or if I am going to have days like these because I have this disease.

The recovery after this IVIG has been completely different than the first three. I am hoping I get stronger with each treatment. I'm not as sick, only at night which is odd to me. I tried to apply for an on-line class, but I didn't get in. I am completely bummed out. I feel like if I got that class then I would feel somewhat part of society. I can't let this get me down because it takes me longer to get back up. I don't want to drive. Just the thought of me behind the wheel freaks me out. I am so scared to drive right now. I am scared of life right now. Baby steps, yes.

I have now surrounded my life with only a few friends and my family. I feel that these friends will keep me safe and are actually worried about my well being. They care. I decided to color my hair. It's red. I feel like myself somewhat again. I am going to get a wig as well. I am not completely balled and I still have hair, but it will make me feel better. I have four more treatments which means more hair is going to fall out. My hairstylist told me that there is regrowth which made me smile. I shouldn't worry about the little things and look at this picture as a whole, but I can't help it. And telling me any different won't make me change.

My pain isn't everyday anymore, but when it is here, it is screaming and pounding at me! My body is still on fire every night. I think I somewhat have gotten used to that feeling. I still get pain in my right shoulder so I put crochet on hold for now.

My appointment with the specialist is next week. I am super stoked for that appointment!

Feeling Good today..

I have now had 3 IVIG Treatments including the one I had in the hospital. I was down for two days after this time. Today I have more energy than I have had in a long time. I was able to start organizing my room (which I have not since I've been home from the hospital), but I don't want to over do it so now I'm resting. I have hope today which is really good for me. I've noticed that when it is cold outside I can feel where the liver biopsy was done. It's crazy!

I'm really happy today. I love all the people that are in my life at this moment. You really see who will be there for you when you go through a life-changing experience. Some people upset me that I thought would be there, but I can't get upset. I need to move forward and be thankful for those who are in my life. Those are the people who count the most.

My pain isn't that bad either. Or maybe I have gotten use to it and it doesn't bother me like it did. I have a few bald spots as well. I really try to not let it bother me, but that's a hard one. I haven't quite got used to that. Nobody notices it but me. My nails are growing like champs and my hair is falling out, it's crazy.

I hope that after each treatment I get stronger. I have four IVIG Treatments left.

60+ Days..

I am now past my 60 days home from the hospital. It has been a lot harder than I thought it would be. Dan estimated three months I would be up and moving ready to be on my own. I am no where near that. It is definitely going to take longer than that. I have learned a lot about myself and what I really want out of life. So that's good. I am getting stronger, but it's so gradual sometimes I am hard on myself.

Today is my second set of treatment and I walked to the treatment room without my walker or help from someone. Where as last month I was wheeled up. So there is progress. I've been down the past couple of days so instead of being a Negative Nancy on my blog I've neglected it. Today is a little better.