Today is rare disease day, and for some reason it’s blowing up all over my social networks. It honestly is pretty cool to me that so many people want to spread awareness to this day and to the people that suffer with rare diseases. This is just going to be short, but I’m so thankful for the hands that have helped me through all these years.
Thankful for my parents that have been by my side taking care of me through all of this. Getting me things whenever I need it. My dad being very straight with drs and nurses (mostly in the er) and he’s taught me to be very straight with them as well. Ha I don’t know what I would do if I was still as shy as I once was.
And my amazing nurses down in Medford that poured so much love into me. I think about them so often. What would I have done all those years without them? Sad I don’t have nurses like that here in Eugene. They gave me something to look forward to each week when I would walk in to get a treatment. I love all of them so much and miss them dearly. Mary, Marty, Martina, Peggy, Patty, Leslie, Leah and Jody.
I make this post just to bring awareness to the rare, hard diseases without any cures, and to be here to talk with the other people that are struggling with sicknesses. I’ve met so many people on here and am so blessed to have people to be able to relate to me and for me to talk to, and they actually get it!
I saw this video today, and honestly I loved it. It was inspiring.
“Now a woman, having a flow of blood for twelve years, who had spent all her livelihood on physicians and could not be healed by any, came from behind and touched the hem of His garment. And immediately her flow of blood stopped. And Jesus said, “Who touched Me?”
When all denied it, Peter and those with him said, “Master, the multitudes throng and press You, and You say, ‘Who touched Me?’
But Jesus said, “Somebody touched Me, for I perceived power going out from Me.” Now when the woman saw that she was not hidden, she came trembling; and falling down before Him, she declared to Him in the presence of all the people the reason she had touched Him and how she was healed immediately.
And He said to her, “Daughter, be of good cheer; your faith has made you well. Go in peace.””
I got prayed over tonight by some dear men. My husband during his pray brought up this story and when I came back home I reread it. This story has always clung to my heart. For 12 years she had a blood disease. For 12 years I have. I’ve longed to touch the physical hem of Jesus, because I know, I know I would be wiped away of all disease. It gave me a renewed hope. The mighty men who prayed over me gave me a renewed hope. Renewed faith. This story means so much to me and I believe God wanted to remind me of it on this night.
These months have been hard I really feel like I haven’t had a purpose in this life. I got on Facebook and the loveliest of girls sent me this message:
I’m sure I’m not the first to take notice and or the first to say this, but..
Every part of who you are is the depiction of true and whole beauty. You are golden and radiant and it never stops. Like eternal flowers in a field. You are the best example I’ve seen of being the woman God has meant for you specifically to be.
P.S. Also you’re really funny lol
It made me laugh and weep. I’m sure not everyone feels this way but it is my deepest desire to be a light. Thank you sweet friend. We barely know each other, but you have blessed me this night on a whole new level.
I know there are a lot of people who read this who are also sick, and I just want to remind you how important it is to get prayer. It is so powerful and the Holy Spirit does mighty things through it.
The same sweet girl sent me this song. So thankful. Be blessed, my friends.
I just had my 24th birthday. It’s funny, birthdays are suppose to be so fun and a celebration but I just have never felt that way. Most people reading this will probably just think I have issues that I need to work through (which sure is true), but I think few will really get this. This year marked the 12th year of being sick. I got sick when I was 12 and have now been doing this for 12 years. Last year, the day after my birthday was the first time I ever had really intensive internal bleeding where it was coming out of both sides of me. It was really scary, but I knew they could stop it.
This past year…has been the hardest one of my life. I’ve never felt so alone, afraid, scared or so sick in my life. I’ve never had so many Drs act like I don’t know what i’m talking about. I’ve never had so many people not able to understand. For most of this year I’ve felt like I was going crazy. I knew something was wrong. I knew I wasn’t just feeling anxiety which is what all these Eugene drs said. I knew something was very wrong. They diagnosed me with an autoimmune heart disease. I felt so sad that I had another disease, but also relieved that something was actually wrong and I wasn’t making it up.
The sad thing is i’m afraid that’s not all that’s wrong. I’m on medication for it, and I feel no different. Always feeling like i’m going to pass out, dizzy, lightheaded…just weird. My seizures have never been so bad, in the 7 years since having them, and i’m on more medication than ever. I do believe something just isn’t quite clicking in the drs minds. something else is wrong. whether i was diagnosed wrong or what.
Yesterday I got off the phone with a surgeon at OHSU. The Mayo Clinic drs found a scar on my brain. They say if they can remove it my seizures will be gone. I’m so willing. When they called me I was in a salon and my dear friend Michelle was going to touch up my hair..how dark it’s become since living in Eugene. My body doesn’t handle this much darkness and rain well. Ha but i’m so eager to get help. Anyways I got off the phone with them and they’re scheduling my first appointment to go up. At that moment I kinda just decided I need a change. So well, i’m in a salon…they’ll be shaving the back of my head soon..why not? i got a change.
For now, I wait for the surgeon appointment, I get more tests done from my neurologist, but mostly I pray for the healing hand of God. I’ve never thought it would be medicine that did it.
This year on my birthday it was so hard. I prayed so much that this would be a year of joy and not sorrow. Of health and not sickness. Of enlightenment and not confusion. I’m not saying it’s not going to be. I ended up driving to the ER on that day and sitting in the parking lot alone crying. Rous was at work and I didn’t want to bother him (not that i would be, i know. It’s a mental thing). I had terrible pain in the back of my head, a lot of bruising and I was so scared i was having bleeding up there. I didn’t want to go in because well, this ER is a complete joke. i won’t even get into the time i’ve wasted, been ignored and treated like a fool in there. So I didn’t want to go in and deal with that, but I also didn’t want to bleed in my brain. So i sat and cried and prayed. I ended up driving home and just feeling so sad and alone.
I’m writing this post not to say that i’m alone. I’m writing this, well mostly for myself, to get out The fears I have, the hopelessness, the sickness i feel, the doubt, worry, the emptiness… This isn’t IT. This is not my life. There is a reason for it all. Though I doubt God, and my faith is so weak at moments. I KNOW. I KNOW this isn’t it. This is not eternity. There will be a day when every tear will be wiped away. There will be no more pain or suffering. I’m still sad, but I know this isn’t the end.
For the people who have had the faith for me, thank you. I need to hear those words so badly. To hear your faith strengthens me so much. I need to be encouraged. So many people come to me to hear advice and encouragement, but i don’t think people realize how much I really need it. So much love from the bottom of my heart to those people.
I heard this song on my birthday and I can’t get it out of my head. These are the words I feel so deeply.
This is the start, this is your heart
This is the day you were born
This is the sun, these are your lungs
This is the day you were born
And I am always yours
These are the scars deep in your heart
This is the place you were born
This is the hole where most of your soul comes ripping out
From the places you’ve been torn
And it is always yours
But I am always yours
Hallelujah, I’m caving in
Hallelujah, I’m in love again
Hallelujah, I’m a wretched man
Hallelujah, every breath is a second chance