Medical care in America?

Its amazing what the right treatments can do.

I haven't had symptoms since getting my first round of plasma exchange. Which is what it's supposed to do. They will remove.my line this week. It hurts pretty bad so I am happy it will be removed. Thought I know that will hurt too. Then we will continue with IVIG and hopefully be in the clear forever. You can tell I'm doing better because I finallly put makeup on and did my what's left of fuzzy hair. Treatments have not been nice to my hair this year. That's been harder to deal with then I thought. I've considered a wig but then I just am like oh its not that bad. I feel homely though. I have 9 months left of hair loss, weight gain, and stretch marks to go. They told me from the heavy and long steroid use it would take a full year for the nasty side effects to go away. It's been three months. The acne is finally starting to go away. I am glad they saved me but the side effects have been simply terrible on me. That's why we are taking alternative and better treatment approaches. God has been good to me and I'm thankful for good doctors that try their best by me. I'm thankful for these treatments though they are a trial themselves.
I currently don't have a Primary care provider due to being "too complex" the company decided they will not treat me since my regular doctor left and literally left 4 of us "complex patients" on the streets to vend for ourselves. Leaving it all in my lap to find a way to obtain my meds and regular care. I have to restart and find a new doctor and the earliest they will get us in is a month. So for a month of going through heck itself I have no help at home. Our medical care is oh so lacking. It is sad to see others suffer because we are the sickest. Its pure laziness on the medical end. No one wants to be bothered by us and they don't care if we pay that price or even die over it. It's wrong. It needs to be changed. And I plan to work towards fighting the fight for others when I get on my feet. I will continue to advocate. Patients deserve rights to actual care.
 I was sent home to die in January when I could have had a simple dose of IVIG that would have and did eventually at home months later save my life. My neuro had no hospital rights at that time and begged the neurologists at a huge hospital in the city to just try one dose. But they instead told him, " no. We know she is sick and dying but we don't want to deal with her." On the other side I was being told, "you're crazy and you're family is letting you be." (That was after they accused my husband of abusing me. Because why else would a disabled female get sicker? Funny they dropped those accusations when they found out his occupation.) Bottome line is corparate care is not about caring for sick people. It's about making money and the two do not combine and work. Doctprs hand ate being tied. It's not always their faults, I should add. As the patient I can vogue years of these experiences. Paying the price of no care when I deserved better. Chronically-ill patients across the country  are struggling. I talk to them and hear their stories. It's not just me or bad luck. It is not a one time oops. Its turning a blind eye because that's the easy way out. Its knowingly harming patients. Some times on purpose. And a lawsuit isn't going to fix it. It is much bigger then that. I won't give up even when I'm given up on consistently. But things really need to change before more innocent lives are hurt and lost. I pray and hope for better care one day soon. -Chelle