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.

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