Summer 2020 Update

I just wanted to pop in and thank everyone for their patience with me as I transition my social platforms. It's been incredibly therapeutic to cut down on my social presence. I am currently in a pretty decent place mentally after starting with a new therapist. (That will be its own post soon.) If this Covid quarantine has taught me anything it's that being cooped up is extremely difficult if your mental health isn't in order. I've spent much of quarantine, "Marie Condo-ing" my brain. Getting rid and letting go of the things I no longer need to carry with me while learning to neatly and peacefully compartmentalize the things I must carry with me. It hasn't been easy, but I am getting there. 

Health updates are far and few between due to quarantine. I see most of my physicians through telehealth right now. As I'm sure many of you have experienced, telehealth is sort of a huge waste of time. Since our physicians can't see or experience our symptoms in person, it's basically just a huge waste of a copay. lol I have had a few tests and procedures in person, however. I'll run through everything in bullet points to make this as easy and quick as possible. 

1.  June 2020
1. After many rounds of Iron infusions, my Anemia seems to have been curbed again. I am feeling much better and am no longer the color of my white walls. Iron Deficiency Anemia always kicks my butt. I am so grateful for a physician who listens to my concerns and acknowledges how well I know my own body. I can always tell when I am in a bout of anemia - and she is always quick to order the tests and proper infusions. 
2.    July 2020
1. I had a quick J tube change since my balloon popped in June. The balloons only last about 6-9 months so it was to be expected. I decided to move forward without sedation again since I wanted to be in and out as quick as possible. Thankfully, it was much less painful and traumatic than my first J tube exchange. While it was still unbelievably painful, my tract was more mature which meant the procedure was quicker and easier on my body. 
2. I had my biyearly PFTs. It seems the Rituxan is finally showing improvement in my lungs! My PFTs were some of the best I have ever blown! This is incredible news as we truly didn't have high hopes for the Rituxan - since it wasn't a very useful drug for me pre-transplant. Isn't it funny how my new immune systems seem to take so much better to Rituxan than my old one?! 
3. August 2020
1. I had my two Rituxan infusions. Nothing to note. They went smoothly. Thankfully the infusion center nurse is absolutely stellar and extremely easy to chat with. 
2. My blood work has been showing some abnormalities we were hoping would dissipate with time. My white blood cells are still incredibly low - even for someone on Rituxan. As in, I have been Neutropenic for months... We took 9 vials of blood during my last infusion as my team wanted to run quite a few tests to determine exactly what is causing this abnormality in my bone marrow. Hopefully, we will have answers soon!

Outside of health updates, I currently spend most of my time down by the river. Being outdoors and soaking in some much-needed Vitamin D is so good for my soul. (While not so good for my skin due to my medication list! lol) Thankfully I have found many beautiful secluded spots to maintain physical distancing from others. I have updated my Amazon wishlist with a few items that continue to keep my daily care as stress-free as possible. https://www.amazon.com/hz/wishlist/ls/33N4NWO6A1DJF?ref_=wl_share I am so grateful to everyone who has donated items to ensure my home care is financially accessible for my family! 

I hope everyone is still hanging in there during this incredibly weird time! Xoxoxoxo