It’s been a long ass time! How is everyone doing ? Nothing like a global pandemic to get your life turned up side down , am I right? How have you been holding up?
I know so many people have been affected by this pandemic in so many negative ways. All I can do is hope for a safe end soon and our lives to return to normal.
Let’s recap: when last we checked in with our heroine, I was on the eve of my first rituxan infusion. LET ME TELL YOU FOLKS – THIS SHIT IS THE REAL DEAL! I am still dealing with ” Meganitis” , what is ” Meganitis”, you ask? You can scroll back through all my posts to see my struggles, but this is the breakdown. Halloween 2014, discovered a lump . turned out to be inconclusive, then spring 2015 another lump – again inconclusive. They were enlarged lymph nodes. Blood work all over the place, rash , fevers, chills, which turned into fire skin. Had Scans, PET and CT, 11 doctors , and still no answers. Multiple medications that worked for like a week, just to not work. Diagnosed with Fibromyalgia and at one point Stills Disease ( now since ruled out )
Current status is a flare up / flare down type of situation . Flare time results in severe whole body pain, lymph nodes in pain, ( arm pits hurting is the weirdest thing ) It sucks. My rheumatologist and my immunologist are the drs I see the most. Working together. They came up with having the infusions. The infusions deplete B cells that cause inflammation which is why they are life right now. So you are supposed to get them about every 6 months. I am up to about 4 months. But man, once they kick in – sweet relief! I feel like I have my life back. It sucks cause this is a whole day process. The infusion lasts about 6 hours. But I will do it if it means I get months pain free. My hopes is that I will get to the point where I do not need them anymore. A gal can dream.
On my weight loss surgery front – I am still stuck at 80 lbs. It was hard to work out or get moving when you are in constant pain. Now I have been trying to get moving more. I have been taking walks every weekend , excursions, bird watching . I like it cause I can get a good walk in , a couple miles without even really realizing it. Plus getting out walking, its easy to social distance and nature is all around us! I need to get under 200 lbs. Its a goal and I need to hit it. Part of the reason I am getting the old blog back up and going. Its a mental thing , but great for accountability for myself. But I really feel these walks are helping me, take a look at my progression so far:
The picture on the left was taken at Easter 2018, picture on right, July this year. When I took the picture on the right , it was the first time I was like – ” whoa, this is me?!?!” I feel my walks are really helping me get moving .
So, in other news I have become a birder, wildlife photographer. At least attempting it, lol. Its funny cause when I was a kid I hated birdwatching with my parents. Now , my dad and I discuss birds and go places looking for rare birds. We found a Mississippi Kite in Durham NH, as you can guess by the name, the bird should not of been there, but it was. Kinda cool if you are into that type of thing.
Here are some recent pics I have taken on my excursions. Mass Audubon membership was the best thing to get!
So that’s whats new with me. What is new with you? How are you dealing with this world right now?
Hope you are all well and your families stay safe!