Kayla Cook

I fall asleep but I’m still almost completely aware of everything around me. I wake up and I know I went to sleep but it doesn’t feel like it and my brain doesn’t get a break at all anymore. My body wants me aware of it and it doesn’t want me to go completely out.

My instinct still screams demyelination and I’m not going to ignore it. For all I know, my MRI’s just weren’t done at the right time, it was either too early or too late. I can’t wait for my pelvic MRI. I’m in so much pain every day lately and I haven’t been sleeping.

I wish I’d ended up at UCSF in the first place. My experience with this first Pulmonologist began with so much hope at least to rule out CF and clarify old diagnoses from childhood but its been terrible, stressful, discouraging. I know I’ll end up where I should be but, wow.

Some doctors are a buncha big babies. I was referred for particular reasons and shouldn’t have experienced so much difficulty if the specialist office could efficiently do their jobs. I called it out so now I’ll travel 3 hours versus 1 hour for making a complaint

I’m all for going where I need to go but I feel like I’ve been referred much further than I might need to, mostly because I complained. This guy pulls me off everything for months, ignores my messages then refers me out when he learns I’ve complained.

And the Pulmonologist...When I told him I’d complained about the office not knowing where to send me, repeatedly sending referrals to places tests weren’t performed: he referred me out to UCSF altogether. Now I don’t have my pulmonary function results and have been self treating.

How do they not know what is and isn’t done within the same building? And shouldn’t they know how to troubleshoot and communicate with each other when a mistake occurs? Why do I have to tell offices what is and isn’t done? If only they’d work together more do I don’t have to.

I call to make an appointment Friday: told they have no Geneticist. Its already my second call and I JUST talked to referral dept so I said “I’m not calling back and forth today: please call referrals and say ‘you’re sending someone to us for something we don’t have here.”

Lately I have so many problems between different departments within a practice. They’ll have me calling each other back and forth so lately I’ve said no, I need you to please contact them and say “we’re/you’re causing a problem in ____ area, lets fix it”

I had a partial prescription for a pack...The pharmacy clerk was like “obviously they cannot give you a partial pack and this has to be sent back.” By the time my DR sees, it will be a week late and I don’t know what you do at that point because I’ve never had this happen.

I was telling my sister Thursday night how my endo symptoms have been under control taking BC daily (no placebos/weeks off) and then my prescription got messed up and things have quickly gone downhillThis is frustrating. 6 months controlled and then a fast disaster.

So, my information was stolen from Behavioral Health. Someone broke in and took a locked filing cabinet.