Weāre going to start today off on a weird note. I go to a Curves gym because fitness is important. I may be not the most mobile person anymore (thanks a TON Susac) but still, health is important. At the gym a person tells me about this vitamin supplement that has changed her health and has improved her quality of life. Sheās like, letās set up a call and you can learn all about it and get some and be healthier. I found out the name of it and do some research (thatās Adulting 101) and find out the stuff is absurdly expensive and less bioavailable (read: your body canāt use but 18% of the nutrients in the pills) than the liquid vitamin that I have access to that are half the cost (which are 98% bioavailable). I let the lady know that while I appreciate her sentiment, I will let the professionals and specialists in Susac Syndrome be the ones to guide me through whether nutrient supplements will heal my autoimmune disorder. Spoiler: they wonāt. I will take my liquid vitamins, though. Be healthy, yāall.
On another note, I am still totally hyped about the awesomeness of my local bike shop.
The guys never fail to be friendly and welcoming when I walk in. Ken greets me by name today and says youāre here to pick up Link, yes? Why yes, Ken, yes I am. Youāre going to let me pay you guys today right? Recall, they have (1) replaced my saddle, (2) patched my flat rear tire, (3) ordered me two new tire tubes, (4) installed the correct tire tube, (5) replaced my saddle post. All at no charge so far. And today Ken let me pay him today, a whoppingā¦drum roll please⦠$37.55.
These guys are like legit superstars.
Weāre changing subject to include stuff about badass doctor Egan who can no longer be my doctor because he got a new job (remember him? He hasnāt been brought up in a minute).
So my UCD neuro immunologist who is supposed to replace him (PYSCH, because no one could ever adequately do that) began me on a new drug (Rx), Baclofen. Itās a CNS suppressant that was intended to help my wacky gait (itās a spastic gait). Well, long story short, it did not. It made me super sleepy which I donāt have time for in my life, and a fall risk. It was the complete opposite of what she lead me to believe it would accomplish for me.
I send her literally three messages over a month requesting responses to my concerns. No response, nothing. So I do some research and safely and successfully wean myself off the Rx. I finally get an appointment with her to follow up and she tells me that based on the increase in symptoms, I am experiencing a relapse.
She asks me what I did last time I had a relapse. I let her know that Iāve never had one before, that my immune systemsā response to this Rx that itās never encountered before seems to have sent me into my very first one. She sets me up with a five day pulse of this infusion called Solumedrol, AKA methylprednisolone. Today is my last day of that. Tomorrow she has me taking oral prednisone for 18 days.
My thoughts are, āThis had better work.ā
Now, circle back to Egan.
My mom/rock and I go out to dinner with him Monday night. Weāre just chilling eating cheese burgers and of course, he canāt take off his doctor hat. He's watching me walk through the restaurant, asking me questions about my alleged relapse, and doctoring me between my complaints to him about his decline in Pokemon Go activity. Heās seriously been slacking lately.
Anyway, apparently, relapses canāt be confirmed without quantitative data. Relying only on reports of increases in symptoms is qualitative. NOW weāre talking; speak science to me.
So about a month ago, this new UCD neuro immunologist who Rxed me Baclofen had ordered a series of MRIs. Brain, C-spine, and T-spine. Hereās our qualitative data.
I never acted on those things because UCD charges things like facility fees, technical fees, and procedural fees that arenāt covered by the copay that I pay already at each appointment. Heads up, they also donāt dislose the estimate of the cost of these things unless you specifically ask for it. When you do, everyone points fingers and transfers your calls for days. By the time you finish doing their jobs for them you find out that it will be something like $2k for your care. And why does the hospital charge for things like facility fees (rent for the room the appointment takes place in), technical fees (thatās the computer the doctor charts your notes on during the appointment), and professional fees (thatās the other radiologist or doctor who reads the imagery or test the doctor orders)? Because hospitals are a business at heart and need money to survive. Patient's money.
Your girl canāt afford thousands of dollars for the hospital to just make money off of patients. Go charge someone with expendable cash, not someone trying to live off of $400 a month.
But now Iām searching for the least expensive way to get these MRIs done for this quantitative data for bad ass Egan. āCuz we all know that heās going to ask me about the images once theyāre done. I couldnāt get rid of him now, probably not even if I wanted to. Eventually, thanks mostly to my GP at Sutter, I found a place that will save me $500 so Iāll only have $1.5K to pay. Iāll be paying the bill until the end of the year. But eh, such is life.
I signed up for my own dental insurance coverage. So far in my life Iāve been covered by my mom because I was a minor and then by my husband because I was married to the useless pile of flesh and asked for coverage for myself and our daughter. She was five by the time he got around to it. Useless. Pile. Of. Flesh. But now I am not a minor and I am cutting free from the useless pile of flesh! So I get to adult and get my own dental insurance! So I want to keep my dentist because I love him tons (medically speaking) and Leeās been my dentist since I was like 10. First I talk to his office about the type of insurance he accepts. Then I call the insurance company and talk to Gilbert (no, not Gilbert Blithe) and we talk about options and financial commitment and the types of procedures covered. Within the day I have chosen the best coverage for myself! I call my dentist and let Kathy know that I have been adulting and I am pumped to announce that as of October 1 I will have my own new dental insurance! She gives me a metaphorical high five. Again, sheās known me since I was 10.
Beware pyramid schemes that want you to commit to costs and promises without bonafide science. Do your research. It may take a minute but knowing what people are trying to get you into, whether because they are honestly trying to help or because they are unaware of what they are presenting you with, is crucial to making wise decisions. Picking up Link now that he is up to 100% after the battle he has unexpectedly given me was relieving, especially given how awesome the bike shop has been. That bike shop was a happy accident but I am SO GRATEFUL that it has worked out so well!
Donāt let up on doctors when they stop making contact with you. Iām looking at you, UCD. Hold them accountable for the oath they took when they began school.
Also, keep those hospitals in check. Be thorough about your bill, regardless of if itās itemized when you see it. When doctors order tests or imagery ask questions and get things in writing, when possible. Make yourself familiar with your health insurance policy and its limitations and expectations. Do your due diligence when youāre after answers. Take notes, record that names of the people you speak to. And keep track of phone numbers youāre given.
Guys, if it sounds like a full time job, thatās because it IS. I canāt tell you how often Iāve had to bow out of tutoring sessions for school for five minutes, take calls while in the car and someone else is driving. If you know youāve got adulting drama coming I suggest you keep a pencil and paper with you for notes at all times. I think the only things I havenāt interrupted are classes and doctor appointments. Itās a commitment, for sure.
And please, have your own back when it comes to insurance. Check out your options, compare them to your needs, and make wise choices. This is something Iām going to have to do next week when I explore health insurance opportunities. As per usual, Iāll keep you updated!