This was incredibly deflating news. Yes I could probably fight for it. But have I mentioned I’m exhausted? Mentally drained? Still working a 40+ hour job? I did notice on the Mayo Clinic’s website that my insurance IS accepted at their facility in Florida. Okay. I could ask my local nephrologist for a referral there. … Continue reading A Rare Moment of Inspiration →

The next night when I had a few moments, I checked my insurance’s website. Guess who’s not on my plan? The freakin’ Mayo Clinic. You gotta be kidding me. Maybe that info was wrong. I checked the specific doctor’s name to whom she was referring me. Nope. I went to the Mayo Clinic’s website. Nope. … Continue reading Are Ya Freakin’ Kidding Me? →

It’s a fifteen minute drive from the doctor’s office to my house. As soon as I got home, I called my insurance company to ask some general questions about how I go about receiving out-of-state/out-of-network coverage for treatment if that’s recommended by my doctor. And… BIG DUH moment on my part: I have a “federal … Continue reading How HARD Was That? →

March 6, 2020 Another four-appointment day: lab, shot, hematology, nephrology. First, some good news. My bone marrow biopsy was negative. I wasn't terribly concerned about it but the results hadn't posted online so I was getting a little anxious. But the hematologist assured me that the bone marrow biopsy and the PET scan were negative. … Continue reading Fighting Back →

March 2020 Someone close to me who was dealing with her own health issues and pain asked me, “Why me?” My oh-so-sympathetic response was, “Oh geez, that’s a pointless question. Why not you? Why any of us?” We have a very close friend who suffered an unimaginable health crisis that he’ll never recover from. This … Continue reading Why Ask Why? →

February 24, 2020 When we discussed the bone marrow biopsy, the nephrologist said it was much easier than the kidney biopsy and that it didn’t take nearly as long. No need to hang out in the hospital all day to monitor bleeding. She also said I could drive myself to the appointment. Music to my … Continue reading Bone Marrow Biopsy. Um. Ouch. →

February 18, 2020 Another busy day. I had to be at the hospital at 6:40 a.m. for the echocardiogram. That didn’t take long and is a completely painless procedure--basically just an ultrasound of my heart. Then I met with a woman to get fitted for the heart monitor, but I was also having a PET … Continue reading Bless My Heart →

Remember that seriously crappy "specialist" I saw back in October who just blew off my symptoms? I was pissed enough to write a letter to the head of that clinic outlining her poor care. I said that at the very least, they should refund my copay and refund my insurance for what they paid for … Continue reading Sidebar: Victory is Mine! →

When I initially got the diagnosis, I sent a message to that effect to my hematologist who had not heard of it. Her colleague was out of the office but she was going to check with him upon his return. I asked her what she thought was the best way to go about finding someone … Continue reading Third Time’s a Charm →

I read what I could over the weekend, but I still had a life to live, and I didn’t want to drown in an information overload. I made a list of places to contact and took it with me to work on Monday. The article I downloaded had four coauthors, and one was listed as … Continue reading Homework… and a Miracle →