Thursday, February 21, 2013

#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

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3 comments:

  1. Hey my name crystal and I was just diagnosed with polymyositis a month ago I will be 26 this September and when I tell you I feel every word you saying believe me I understand I'm just trying to find ways to cope the meds and therapy are all new to me my entire life has changed.

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    Replies
    1. My advice is to find a rheumatologist with experience!! And the meds are a hit and miss, you won't know until you've tried them. Join the Myositis Org as well!

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  2. Sending you a HUGE hug Hayley. You really are an amazing person! Thank you.

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