The long road home

I am sorry I have not updated this blog in almost a year. The past year has been quite the experience for me, nearly dying from malnourishment, attempting suicide twice, becoming addicted to painkillers and ativan, living in Cedar Sinai for weeks on end, being pumped full of IV's, weighing at only 125 lbs. and not being able to walk, to fully functional in a few months time has been extremely crazy for me.  I look back and realize I should not be here. I should not be driving, playing my bass again, talking with friends, and enjoying a brand new day. Many times I had given up hope, and many times I was sure it was the end. I cannot being to explain the misery and torment that life began to become in the process of treating Lyme...

Everyday I wanted it to be over, I wanted release...It seemed like the unsolvable puzzle that no one could figure out and the only thing anyone could do would be to take a stab at it. My doctors didn't know what to do, I didn't know, my family neither.

I remember that I had major stomach problems...it always hurt. So eventually I stopped eating. Along with all the antibiotics and medication came endless heartburn. With the heartburn I could either eat and then have to sit up for hours, or sleep...eventually I chose sleep. Soon Even the smallest meals began to fill me up. I went insane from the hunger and began having crazy thoughts. But to say the least I just did not want to continue. There was a point when I was getting my IV rocephin and I had not eaten for days. I stood up to go to the bathroom and literally fainted and hit my head against the wall. I fell over and wanted death. I had given up. I was rushed to the hospital and sent to the ER. They wanted to admit it and had asked if I had ever taken an HIV test because I was so thin and frail. I assured them I had and Lyme disease was my diagnosis...
There I sat in that hospital room...night after night hooked up to bags of fluids, and never being able to sleep. It was cold and dark, lonely and painful. At that point I was determined to die...I remember my dad crying and my mom too. I didn't care anymore, but through the grace of God my heart rate went up form the 30's and I was able to go home.

I'll save you some time but in after that I ended up swallowing a bottle of ativan and sleeping pills one night because I was done....let me tell you to never do such a thing. I ended up having to choke down charcoal and have a catheter put it. After my week long stint in one of the dirtiest ICU's I had ever seen I was then sent to a mental hospital in Cerritos that was literally hell. At this point I could barely walk and was reduced to shuffling around the grounds and hoping my back would not break on me. On the plus side I got to meet Sarah Michelle Gellers cousin who was a patient there (who looked just like him) and witness people hallucinating and tweaked out of their minds. Talk about One flew Over the Cuckoos Nest. Those times were scary. I was not sure I was going to make it...but I did.

I am back at normal weight, I am playing my bass, I am walking up stairs, I am living...I still feel bad sometimes, and still have neuropathy. But I don't feel like Lyme is there as strong as it was.

I say this to all the other Lyme disease patients out there...There is hope...there is an end to the suffering, the pain, the endless nights where you don't know if you will wake up, or even want to. The human body is capable of amazing healing on its own. We are incredible machines designed by God to allow ourselves to sustain even the most traumatic damage. Another thing is do not buy into the bull shit you may read. Lots of people have been sick for many years and have tried so many different crazy treatments that they no longer know what they are dealing with. There is an endless road of doctors and medications that can be pumped into your system. Do not trust everyone, there are snake charmers in the midst of chronic illness. Antibiotics are dangerous, and long term antibiotics are dangerous as well. There are great risks and complications to long term treatment, so weighing of the pros and cons is crucial.

During all this illness I experienced a great heart ache...A heart ache I have not had the time or want to deal with. I never wanted t o because every time I tried I would get emotional and the pain would get worse. I lost someone I loved and ironically this love took me to where I got Lyme. I still feel lots of abandonment and sadness and I can't seem to let it go. I am writing this for the therapeutic value of it. There is a lot of loneliness in chronic illness, lots of isolation, lots of friends and family lost, even significant others get tired. I guess I am still feeling lonely from all of this. And it's funny that I would be embarrassed to say I am lonely...Something to human that everyone experiences...Why would someone feel ashamed to say that to another person. And ask for company....is it my own insecurities or is there real judgment from others...who knows...I should stop caring so much. As the Persian girl who I met in the mental ward who I was sure had Lyme too said" I am undeadable!"  At least I can look back and say I have survived. I am tough as nails...I am amazing...And really believe it.


You can beat this god awful disease and all the misinformation and ignorance that goes along with it. There is hope and someday I pray that we will be bigger than AID's patients (Although we already are) and we weill get the recognition and help we deserve.

I will continue to update this with Lyme and non Lyme stuff. I hope you are well on this Saturday night and I pray for you.