This is the Current Status page, whenever there is a “situation” I will update this page.
What is going on Now:
I attempted to go to 8mg of Dexamethasone on Sunday. I had been having no autoimmune like symptoms, the journal has the details. However, Sunday afternoon I developed abdominal distension and severe symptoms of what I think is low blood sugar? By 9pm my temperature was 99.1, I had tingling in numbness throughout most of my body, though eating helped that some. Around 11pm I took an additional 2mg of Dexamethasone and was completely back to normal in the morning. I also broke out in a rash then on my nose, and cheeks and chest. Last night it actually “burned”.
Though once again around 3pm I started to deteriorate and the exact same thing happened, except this time I had taken 10mg of the Dexamethasone.
My heart has also not been great, numbers are in the log. I also got a glucometer this morning.
My skin is also in really bad shape, I am covered in bruises from the ER incident last week. I am using lots of moisturizer and treating my skin as if I am made of glass. I spoke with Patient Relations to get my record and find out what exactly happened since I barely remember anything. I offered to do some education too, since I do psych ER ALL the time for work. I get that Mercy is not a psych heavy ER, paramedics for whatever reason did not take me right across the street to Bayview.
I have no idea what this is. I am not pretending to know. Also, I care about providing my background, since I am getting into some doctory stuff:
All this happened because I got back from surgery a week late, on steroids, and was told I needed to move to our crappy online system Practice Fusion per COMAR regs immediately, and I got a new phone. All of you played a part in that happening.
Other random facts that might be helpful:
- My mood has been stable and no signs of psychosis since Saturday afternoon, this has been approved by Mike the boyfriend! I am going to stay on Risperdal 1mg bid though due to my history of medication induced mania and psychosis.
- I’ve been wearing SPF 50 head to toe, and not staying in sunlight longer than 20 minutes. I finally found SPF 100 this morning.
- I have been eating very healthy, a mostly macro vegan diet. Only exceptions have been this weird blood sugar thing? the past few days.
- While with the steroids I am not sleeping a lot I am getting a lot of rest, and staying calm. Using my therapy skills on myself!
- I am dropping down to 50mg of Amitriptyline starting today. I am concerned though that some of the pain in my right leg is neuropathic, and Gabapentin and Neurontin do not work for me, so I may need to stay on a low dose? Gapapentin and Neurontin I also have TONS of side effects, ended in a hospitalization in 10/14.
- If my mood is still stable in the next few days I’ll be starting the Chantix so I can quit smoking! I’ve had medication induced depression from Chantix in the past. I cannot quit cold turkey, I’ve tried. Also, it’ll cause severe constipation, and well I have enough problems with that.
I need from Dr. Ratain and/or Dr. Martin:
- Some guidance on this Steroid/Autoimmune thing? My thought is I may need to take the Dexamethasone twice a day? It’s 3pm again, and fever and all symptoms are spiking again.
I need from Dr. Martin:
- Today hopefully I will have the ADA Accommodation letter for my job ready to be signed again. My supervisor and I had to make some changes.
- I need a Disability Plate, I’ll be getting the paperwork today. My job is mobile, and my car is my office. I need to be able to park in the shade, close to buildings etc. Also when I’m shaky or dealing with the migraines or having a bad vestibular day with the Meniere’s I really need to be as close to the door of wherever as possible! My team is actually making history, no joke or exaggeration, I want to be there as much as I can.
The important files and links:
- Autoimmune Symptom Log2 – it is a Google Doc so it updates in real time.
- Health History3 (google doc version) – Tracks symptoms from 4/16 – 5/3/16, as well as detailed health history of the past 4 years.
- Health History (wordpress version) – Will load like a regular website, but there will be a lag in updating it.
- Portal Homepage4
- Google Drive5
I hijacked my work’s release form and will be uploading it very soon. I also will be adding a med list when I have a moment. I’ll also have a directory with all of your main office numbers in case you guys need to call each other. For now though:
- If you need to reach Dr. Ratain the office number is: 410-550-2044, On Call: 410-955-6070, Scheduling: 443-997-1552 .
- If you need to reach Dr. Martin the office number is: 410-659-1004 and ask for his assistant, usually it is Samantha.
- Dr. Rosenberg apparently is involved too at this point? Their direct office line is 410-550-5452, DeShante is the one who got in touch with me asking for the password?
Thank you all for your help, you’ve all be heroes and lifesavers, this has been a scary time, but I know I’m in the best of hands!