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...