Gluten Free Beauty

In July I was given the chance to change my life. I knew it wasn’t a 100% possibility for a positive outcome but that is what taking chances are about.

I had this life changing surgery and my life did change. My seizures improved but with all things, it was at a cost.

There is a version of The Little Mermaid in which the mermaid is given legs but every time she uses them she is in intense pain.

Is the pain worth the legs, worth the miracle? Yes. But the grass is not always greener.

I may never be able to run that marathon I have been dreaming about but I may get to drive. I will always be scarred but I don’t fear going into public.

I went through a period when this blessing felt more like a curse, I was worried I made the wrong decision. All the plans I had were still out of reach and my life still felt as if it was on pause.

I asked my mother, as I always do in times when I am lost, “what do I do, now?” This had been my chance, my miracle and when it failed to be everything I prayed for I felt stuck in a transition I wasn’t ready to make.

My mother said “You will be a mother. You will live. You will find new goals and new mountains to climb.”

My mother gave me permission to start over. Permission to say it is okay and move on. It was powerful.

I have chased meaning and purpose my entire life when really my only purpose is to be alive. To live a life that is full.

Here is to living and the adventures that follow.

I'm filling out paperwork for a new neuro, so I was going through my blog trying to remember when I had my surgery and I found this. I needed this.

6PM In New York (via yesdarlingido)

Can we talk about chronic pain and this thing the ER calls a pain scale.

See I feel this 1-10 business is ridiculous. Ask me how many spoons I have left, ask how many stairs I could walk up at the moment - I can answer all of this. Pain on a 1- 10, yeah, I’m always going to say what I am actually feeling - so unless I am dying, it wont be 7 and up. Which always ends up with me having various healthcare professionals ignore me because assholes with period cramps and ingrown toenails having pain scales of 9.

This is unfair. I have experienced real pain. I have seen others experience real pain. A 9-10 is losing a limb, suffocating, drowning, being on fire, dying.

A 7, for me, - is seizing after major stomach surgery, while dealing with a headache from leaking spinal fluid.

When I say a 4, I mean a 4. I mean I am extremely uncomfortable, I am in the fucking ER for a reason and not walking around wasting my time in other places. I am crying and having seizures - obviously I am in pain or there is something wrong.

So now I have people telling me that in order to get proper care at the doctor or at the ER I have to list chest pain or whatever at a 7. That is misleading. My pain is a 4. Sometimes it is a 5-6.

So then what if I say my pain is a 7 or 8 - I have heard with my own ears, nurses make fun or question patients with high pain numbers. I don’t want pain medication, I don’t want sympathy. I just want good care. When I am 26 having a stroke or heart attack don’t treat me differently than a 70 year old in the same position. I have been in constant pain for 5 years, constantly watching my every move to avoid seizures, dropping my blood pressure, eating gluten. I am 70 years old in a 26 year old’s body. It is so annoying to be ignored and literally watch an elderly woman, who mind you, is laughing and cutting up, be given better care just because she is old. I literally stopped breathing in the hospital. My mother said the machine said apnea in big clear letters and was buzzing for over five minutes. My mother woke me up. My mother made sure I was okay. The nurses - they said the system was imperfect and the sensor was probably not on my finger correctly. I don’t even know what to say, I don’t know why I am writing it here, I am just so frustrated. I am 26 with a brain tumor, last week an ER doctor looked at me and told me there was nothing wrong with me but anxiety. I went because I thought I was having another stroke and then had a 5 minute seizure, in which I stopped breathing. Since then I have not been the same and there is literally nothing I can do about it.

I really hate leaving my only update on such a bad note. I was having a really terrible evening. Other than my health, my life is so wonderful. My daughter starts pre k on the 8th and in October and November I have appointments to find a reception dress.

In April we are moving. My parents bought 25 acres of land and Charlie and I are paying for a house on that land. We are going to be ranchers and I can't wait.

& best of all is my little family. That doesn't get any better. I have so much to be thankful for. The bad days are terrible but it just makes the good days so much sweeter.

I am going to make it through these trials, it won't always be easy, but it will be okay.

Please reblog this and help raise awareness!!! I don’t know this girl but I live in lynchburg and the hashtag #findphenix barely has any posts !!!

Please, please, please reblog! #findphenix

This is my cousin. She has depression and anxiety, she did not take any of her medication with her.

Her parents miss her terribly and so many people love her.

Come home Phenix.

I don’t normally reblog these but I trust glutenfreebeauty and if she is heading north, that could be through my area

Thank you to everyone spreading her pictures and flyer. The police have spoken to the man her parents believed she was meeting - he has not answered her calls in some time and has no plans to meet her.

There could be more older men with plans to meet her. Her parents know she is hitchhiking to find out about some man (via Craigslist and other forms if social media) who has convinced her that he loves her and will solve all her problems.

She is 15 year old. She is in real danger. Please help my family find Phenix and bring her home safe.

Phenix has been found and is safe! I have very few details other than she is alive and well, in police custudy a few hours from home.

Please reblog this and help raise awareness!!! I don’t know this girl but I live in lynchburg and the hashtag #findphenix barely has any posts !!!

Please, please, please reblog! #findphenix

This is my cousin. She has depression and anxiety, she did not take any of her medication with her.

Her parents miss her terribly and so many people love her.

Come home Phenix.

I don’t normally reblog these but I trust glutenfreebeauty and if she is heading north, that could be through my area

Thank you to everyone spreading her pictures and flyer. The police have spoken to the man her parents believed she was meeting - he has not answered her calls in some time and has no plans to meet her.

There could be more older men with plans to meet her. Her parents know she is hitchhiking to find out about some man (via Craigslist and other forms if social media) who has convinced her that he loves her and will solve all her problems.

She is 15 year old. She is in real danger. Please help my family find Phenix and bring her home safe.

Please reblog this and help raise awareness!!! I don’t know this girl but I live in lynchburg and the hashtag #findphenix barely has any posts !!!

Please, please, please reblog! #findphenix

This is my cousin. She has depression and anxiety, she did not take any of her medication with her.

Her parents miss her terribly and so many people love her.

Come home Phenix.

Please reblog this and help raise awareness!!! I don’t know this girl but I live in lynchburg and the hashtag #findphenix barely has any posts !!!

Please, please, please reblog! #findphenix

This is my cousin. She has depression and anxiety, she did not take any of her medication with her.

Her parents miss her terribly and so many people love her.

Come home Phenix.