The Low Down

Alright, so here’s what’s been going on in Ashley Land.

Pulmonology: MCTD has further progressed and as a result, I now have lung involvement. I went through Pulmonary function testing and it showed that I have a decreased ability to diffuse carbon monoxide into my blood stream. Diseases that cause this issue are COPD, Emphysema, and Interstitial Lung Disease, which is what my Pulmonologist and Rheumatologist thought I had. ILD is a rare lung disease that’s common among autoimmune patients and has a life expectancy of 3-5 years. ILD causing recurring scarring in the lungs and the course of treatment usually starts with my holy grail, Cytoxan. My CT scans came back clean which means there is no visible damage, BUT does not mean I don’t have the beginning stages of ILD.

My Pulmonologist is stumped and becomes increasingly more so, everytime we rule out a diagnosis. We’ve ruled out Asthma, Allergies, COPD, Emphysema, and Pulmonary Hypertension. My shortness of breath is becoming more frequent which has promoted me to schedule an earlier follow up than expected. I’m not sure if more testing will be ordered or if I’ll be passed along to Duke or UNC (she mentioned this could be an option), but someone needs to figure this out and it needs to be treated. Now. My next appointment is on the 26th of this month, so we’ll see what happens.

Rheumatology: Not a damn thing has happened with Rheumatology because my doctor was waiting for Pulmonology to provide a diagnosis so we could move forward with mt treatment, but since there is no diagnosis, nothing is happening. My follow up is Nov 2nd and I will, once again, advocate a change in chemotherapy treat, like I have all year long. He decreased my Cellcept from 3000mg a day to 2000mg thinking it would help prevent me from getting infections so often; surprise, it didn’t work. So frustrating.

ENT: 2 surgeries later and I still can’t breathe properly out of my left nostril. The CT of my sinuses is wild. The actual airway on my left side is 1/4 of that on my right. Makes me wonder what the fuck my surgeons did in the other two surgeries. I’ve had a lot of sinus infections this year and my ENT thinks my limited airway could be playing apart. So, on Monday, the 19th, I will be having a Septoplasty and Turbinate Surgery. Glutton for punishment, I am. Basically, my ENT is going to remove a portion of cartilage in the back of my septum to correct the deviation and will then remove bits of bone to open up my airway. Sounds like fun, right?

Psych: Lord, where do I begin. I think I’ve tried every God damned medication on earth for my PTSD and only just found one that works; Rexulti. I’m actually calmer and my OCD has been tamed by it. I’m still having flashbacks and nightmares, but I’ve also been especially triggered lately. I definitely don’t have the level of anxiety that I once did, but old habits like flinching when someone comes to close to my face. I think my heightened level of stress is causing me to respond to triggers more frequently. One day I’ll be stress free…said no mom ever.

I’ve seen my other specialists such as Urology, Pain, Neuro, Gastro, etc, but nothing exciting has happened; just med changes. I’m still getting infections frequently and they last about a month and a half. Nobody can explain why, they just load me up on antibiotics and send me on my way. The biggest changes have been with my medications. My med list is 3 FUCKING PAGES LONG. 3 pages! I am up to 32 medications (not including supplements) with 23 of them being taken daily, 1 weekly, 1 monthly, and 7 as needed. Ain’t that some shit? Who the fuck takes that many fucking medications?! Jesus H Christ I’m a mess 🤦‍♀️

So, that’s the scoop, minus one or two things I’m keeping close until I have answers and confirmations. Wish me luck on my 3rd and last sinus surgery. 🤞

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