Beyond frustrated.
So I have always known that there is something wrong with me. I remember getting migraines so bad it felt like a hammer crushing my skull when I was 3-4 years old. I have had recurrent infections since I was young. Strep, ear infections, bronchitis, pneumonia 3X, staph, impetigo, sores on my scalp, sick... all of the time. Never thriving.
About 5 years ago, I had a staph infections throughout my whole body. Mainly on my face and hair. I lost a lot of my hair and these sores were atrocious. I had to stop working because I could literally not wake up. I looked disgusting and every doctor I saw said it was ‘self inflicted.’ They wanted to put me on anti-psychotics... So after seeing about 15 doctors, I stopped going. I mean I am not a doctor so I didn’t know the medical terms to use or even what was happening.
After that, I started researching everything. I put together a list of my symptoms and researched all of the time. Took notes. Tried holistic approaches at home. I wore head bands to cover my bald/peach fuzz on my head for over two years. I was living at home with my parents. I pretty much stayed up all night searching my answers and I slept all day. I stopped living. I stopped watching football games or seeing my friends. I actually turned off my phone for months. I was done. It all seemed so.... fake. One day, I received a text from my mom that was supposed to go to my older sister. It said ‘Idk what is wrong with her. There isn’t anything wrong. It is all in her head and she needs to get a fucking job and start contributing around here. I am sick of her being sad for no reason.’ Let’s just say after that, I didn’t want to live anymore. My own fucking family was talking shit on me and said it was in my head as well.
A month goes by, I just wanted to die. I hoped that whatever was wrong with me, would just kill me already. I remember looking in the mirror and thinking ‘guess it’s all in my head. I need to get out of this house or something.’ So I went to hang out with my friends. I was dead inside. I started doing drugs. I started spiraling down.
I met my husband two weeks later. He saved my life in every single way possible. I planned it all out. How I was going to take my life. It is the most horrible feeling in the world to be going through something and your friends/family don’t believe you. All you need is someone to believe in you and understand you are struggling. Kevin changed this for me. I have never had someone in my corner. He caused me to relight my soul and keep trying. I wanted to live.. for him. For our future.
So that was almost 5 years ago. I got a job. I moved out with Kevin. And continued my life. He would tell me that I need to go to a doctor and keep trying. It would make me panic just thinking about going to a doctor again. So I finally got the courage 2 years ago to see another dermatologist. I finally decided to go because Kevin asked me to marry him and I didn’t want to have sores and cystic acne on our wedding day. That’s when I started to notice other symptoms.
My PCP sent me to a Dermatologist who sent me to a Hematologist who sent me to a Rheumatologist who sent me to a Neurologist and an Immunologist... They all told me that my blood work came back normal. I was diagnosed with fibromyalgia and myofascial pain. I have a high CRP and MTHFR mutation. I also have a sleep disorder that I have not received the call to book the sleep study. Other than those things, I have been told that I am fine. My blood and urine are normal. I am the picture of health....
WHAT A FUCKING JOKE. Like seriously. I have used 140 out of 480 FMLA hours since March. Something else is wrong with me. I don’t know where to go from here. I feel invisible. Alone. I don’t know what to do anymore. I feel defeated.
