Long Overdue Health Update

So, I’ve been notably absent since January. A lot has gone on since the beginning of the year.


Rheumatology: I FINALLY had enough of my douchebag Rheumatologist and replaced him with the Rheumatologist Isaw in February (4th opinion). My new Rheumatologist listens to me, doesn’t dismiss what I say and how I feel, and he’ll talk to me about issues that aren’t strictly Rheumatological and guides me in the right direction. New Rheumatologist put me back on Plaquenil which I’ve been on since July. I have my follow up at the end of October at which time he’ll look over my labs to determine if he feels confident in treating me or if I need to be under the care of someone at an academic institution. He was up front about his uncertainty in his ability to be my provider because my case is complex and not something he’s ever had in a patient. I’m 100% okay with that and stated that if I can see a different Rheumatologist, I’ll go back to Duke.

Hepatology: I’m still seeing my GI/Hepatology doctor and have no plans to leave. I have though, at the suggestion of my new Rheumy, started seeing a Hepatologist at Duke to see if we can figure out what’s wrong with my liver. I’ve had a few abnormal labs since the beginning of the year, including my most recent labs in July, which is the highest my AST has been since moving to NC in 2014. My Duke Hepatologist is AMAZING. I had my appointment with him last month and he asked me questions I’ve never been asked (what ethnicities I am, asking if I’ve been tested for disorders I’ve never heard of), spent an entire hour talking to and listening to me, he ordered labs I’ve never had looked at (celiac diseases, Wilson’s Disease), and he’s a Connecticut native so he got bonus points. The game plan was for him to get the slides from my liver biopsy from Feb 2018, get my lab results, and sit down with other Hepatologists and Pathologists to brainstorm on what could be wrong. I just an email today and was informed that they just received the biopsy slides today, they’ll be looked at tomorrow, and I’ll get an update on next steps on Thursday. After 7 years and 5 different Hepatologists, I feel hopeful that I’ll finally get some answers.

I’m still seeing the same Urologist, Cardiologist, Dermatologist, Pain Doctor, Back Doctor, GI, Orthopedist, PCP (like I’d ever let her leave), Sleep Doctor, ENT, Neurologist, Endocrinologist, and OBGYN.


I’ve had several medication changes since then and some not by choice. So at the beginning of the year our insurance (Blue Cross Blue Shield) decided that prescription costs were now apart of my $2600 individual deductible. Every year around this time I max out on my out of pocket and medications are free and I have no copays, so I stock up on what meds I can. Certain ones like Lyrica I can’t get 90 days dosages for since it’s considered a control substance. Imagine my surprise when I went to fill my script and they asked for $1300.00. Yup, you read that right. Cellcept was $1240.00 and Victoza was $1100.00. I called BCBS, CVS, manufacturers and I was repeatedly told that no one would help me. I had to cut down from 200mg of Lyrica to 50mg every other day to stretch out the supply I had so I didn’t go into withdrawal. I was out back on Gabapentin to try and counter the reduced Lyrica dose; didn’t work. I had to stop Victoza all together for several months until my deductible was met. Thank God for GoodRx, I was able to get Cellcept for $90.00 a month. None of my other meds were any higher than they normally are.

Insurance also decided in March that they won’t continue to pay for Aimovig until I’ve tried and failed both Emgality and Ajovy. I was on Emgality for 4 months and failed it and just finished 2 months of Ajovy which I also failed. I’m currently waiting on insurance to approve Aimovig. My Ortho switched me from Etodolac to Diclofenac for the joint pain which is just eh, not working above 60%. Pain doctor added Cymbalta to help with pain which it is but I can’t tolerate more than 30mg because that combined with both my morning or nightly meds makes me a zombie. GI put me on Linzess and a probiotic to make sure I always have good gut flora. PCP put me on Phentermine to combat the hormone imbalance we just discovered I’ve had since pregnancy AND I have weaned down to .5mg of Ativan (60 tabs a month) and I’m now getting a refill between 6-10 weeks (depending on my stress level). As I mentioned above, new Rheumy put me back on Plaquinel. Other than those changes, all my other ones stayed the same.

Here is my current med list

Zofran- 4mg
Vitamin D2-50,000 IU Amitriptyline-100mg
Mometasone Furoate-50mcg Nasal Spray
Diclofenac SOD EC-150mg
Ajovy-225mg Syringe


It’s been up and down. From mid April to the beginning of July I was sick with 5 different infections, back to back. I had a sinus infection and put on antibiotics, 5 days later felt worse and was put on an additional 5 days of a different antibiotic, a week later I get a UTI and get put on 7 days of antibiotics, finish those and don’t feel any different so get put on an additional 7 days of a different antibiotic, and then 5 days later a small cut by my left eye got infected and was put on 10 days on antibiotics. That’s never in my life happened and my none of my doctors can explain why that could have happened. I haven’t been sick since mid July, knock on wood, but flu season’s almost here 😬.

My joint pain and weakness and muscle weakness hasn’t gotten any better and I’m feeling it the most in my hand and hips. I tried PT for my hip pain and general mu as cleaning weakness but it was too painful so once (or if) I get a grip on pain, I’ll revisit it. My migraines are worse than ever since being taken off Aimovig. A fun new symptom as of the last 3 months is getting lightheaded every time I stand up, regardless of what position I was just in. I saw my Neurologist at the end of July and since we’ve ruled out MS (via brain MRI earlier this year) and any tumors or lesions, she’s unsure of the exact cause, but suspects it may be because of the migraines. The game plan with that is to get me back on Aimovig and control my migraines to see if it stops and if it hasn’t, I have to go to physical therapy to “retrain my brain. It’d be nice if I could retrain it to fucking work like it used to but the chances of that are the same ones I have at marrying Sophie Turner.


I see my Urologist for my yearly visit next week, my GI and OBGYN next week, and pain doctor the week after. Rheumatology isn’t until the end of October. Cardiology for my yearly appointment in November. Neurologist in December. Hepatology is TBD.

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