I am still waiting to hear back from Dr. Thomas in regard to the results of the cultures they took from the fluid in my lung. I am hopeful it will be something that can be treated…and I am hopeful it will be something as simple as an antibiotic to clear it up.
I continue to have my ups and downs as far as my symptoms go and recently began experiencing night sweats which is very odd to say the least! And while the past few days have made it more difficult to keep pushing, I am getting through.
Monday helped as when I texted my boss to say I would be working from home she replied only to remind me that due to it being President’s Day, we had the day off so that was a nice surprise! Haha 🤓
Tim and I were able to have a little part of the day to ourselves in which we just bummed around and did lunch…but it was well needed for me.
And I was also able to get Asher a haircut…
And then for those of you who have heard me mention Cody, I am attaching a link to the segment his mother Sharon did on their local news channel. It is extremely difficult for me to watch especially now at a time when I am struggling so much with my own symptoms.
I really appreciate all of the prayers and support that you all continue to surround me with! Please keep Cody’s family in your prayers as well, as they deal with such a loss. Sharon has been a HUGE advocate for all of us battling this disease and while I am so thankful for her, it came at such a big price that she shouldn’t have had to pay.
And as a reminder…my whole intent of blogging is not for sympathy or especially for pity…but simply to show what it’s really like to live with a rare disease!
The never ending doctor appointments, the countless scans and tests and procedures…only for it to lead to a guessing game of treatments. And while I am very fortunate that treatments have helped me in the past…I am blogging for awareness!
This disease is so close to having a cure and I honestly believe that! Dr. Hornick in the attached link is part of my medical team and I am beyond grateful for him. So pray that more doctors can be like my team of doctors at Iowa City, doctors who care and are compassionate and passionate about helping each patient they encounter!
My doctors have gone out of their ways to research this disease and help me search for answers. I wrote my book and I am blogging because like Dr. Hornick said, if you google Fibrosing Mediastinits, there is very little on this disease! My book and my blog are at least a couple more sources for others to learn from and to especially draw hope from!
So enough rambling…here is the segment and feel free to share and spread for awareness…
Midwest Fungus, Deadly Disease: A young man’s fight for his life