Life Now!
Since the Terrible Thanks For Asking podcast we have a few more followers so I thought I should update as to where we are now. Though I sometimes try to end it with Rafael, he ends up sticking around. Literally sticking because he is plastic. I guess it is no skin off my back because he is also the cheapest date ever.
We are good. We had bought a house in the pandemic and then we sold it ten and a half months later. I fucking hated the house at the time. I felt like crap and there was a lot of work to be done and I was alone. In hindsight, it was a blessing. What else are you going to do in January in Minnesota when you are immune-compromised, alone, and in a pandemic, except scrub and repaint a 600 square foot basement as well as sell all the stuff the previous homeowner left in it? I made a profit on the house, enough to cover my 20K plus in medical expenses this year. So that is awesome, but I will tell you, I will never buy an old house as a woman struggling with her health again. These days I am seriously considering living in an RV.
I then snagged a deal on a “luxury” apartment in Minneapolis by taking over someone else’s lease. The only thing luxury is the lobby and the small MTV-like wading pool that is now closed. It is about the size of that basement, but I love it because it has a big balcony that faces East. I wake with the sun and no matter the temperature, I drink coffee on it and watch the world come alive every morning. This is something that lights up my heart.
My lease ends on Christmas day and everyone is asking where I will go and what I will do. I am not sure of the where yet, but I have always been a bit of gypsy and I know I will end up where I want to be.
I am currently doing IVIG every third Friday. I believe in it and I am feeling better. When I feel sick of driving over an hour and half each way to the Mayo, I have to remind myself that I am getting treated with a miracle medicine. I just had my annual eye appointment a year from my last attack. Eye are stable and I have had about as little thinning to the nerves as possible from my last attack. One year away from the attack and I can exhale a little.
My vitamin D levels are on the high end of average after being perpetually very low even after taking 10,000 ICUs regularly. I switched to a liquid vitamin D and I think that worked. My Iron is still a little low so I am working on that. I also take B12, turmeric, glutathione, and a mushroom tincture. As far as diet, I still avoid gluten and monitor my dairy, sugar, and alcohol intake, but I do let myself live. I know I feel better when I cook for myself and integrate as many vegetables as possible. If you are struggling with getting nutrients know that cooked vegetables are easier for a stomach to absorb. Stews, soups, and curries are a good way to go. If you don’t have an instant pot, get one. I exercise very moderately every day and make myself get outside for at least a half-hour twice a day.
Work is busier for me than it has been since pre-pandemic, but I seem to be handling the load though the days can be long and sometimes I need to work on the weekends to keep up. But this is also a piece to how the what I am going to do next. I want to go on retreat. The objective is to see if a little rest can recover any nerve damage. I also want to focus on this project, whatever it is. I want to help patients who feel lonely in their journey. I also want to get pharma to stop underplaying the side effects of Prednisone as well as develop something new for patients. Hello, Prednisone was made in 1950! I just want you to picture how much the telephone as developed since 1950. Yet, Prednisone is something we put in our bodies and no has touched it for seventy-one years. Why? Because it is cheap and if you are still confused about why our medical system fails patients, it is because profit is a way higher priority than healing.
I have received a lot of messages from other patients, which I LOVE. I want people to know they are not alone. Many hope I find a diagnosis. I don’t care about the diagnosis. The goal here is healing.
If you have thought about buying my book here is what happens when you buy a book; $5 goes towards helping patients like me. And once all other distribution fees, sales tax, processing fees, website fees, shipping fees, and income tax comes out, what is left goes, yes, into my pocket. But then that little bit of money frees up my time to try to help other patients. And while you did something good, you get a really cool, limited edition, one-of-a-kind book.
I don’t think Rafael and my work is remotely close to being done. As I begin to feel better, I can tell it is just beginning. Be well.
