The last month has been filled with doctors appointments, tests and everyday life. I promise I haven’t fallen off the face of the earth, I just haven’t had much time or energy to write. I had a very intense MRA/MRI scan done at the end of August that showed some scattered white spots, but to our relief they were caused by my severe migraines and nothing more serious. Dr. M also started me on Cymbalta 30mg for my fibromyalgia (that he diagnosed me with), chronic nerve pain, and also to hopefully prevent my migraines. I’ve noticed a slight improvement in my all over body pain, but zero relief with my migraines. I have an appointment with the Headache Clinic at UCSF in the coming months and have been diligently journaling my daily headache issues.
Now, on to my breathing and the never ending defiance of my lungs. I am scheduled to see an excellent pulmonologist next week. I completed my Pulmonary Function Tests yesterday and to say that they were easy, would be a big, fat lie. I haven’t ever been so exhausted following a test in my entire life. This wretched cough that has become a daily pain in the ass, nearly knocks me off of my feet when it rears it’s ugly head at different times during the day. It’s a painful and terrible, sounding something like a fog horn. When I start in with a bad coughing spell, I get really dizzy, short of breath and almost to the point of passing out. It feels like I have stuff in my chest to cough up, but nothing ever produces from all of the hacking. Anyone who has witnessed the cough, knows it can be kind of scary.
The last month has brought a lot of illness, as I’ve had some sort of ailment, every single day. I have found myself staying on my couch most weekends, unable to do more than just sit and attempt to breath. The central valley has seen it’s fair share forrest fires this summer and because of that, the sky has rained ash
more times than not. I’ve been confined to my home on some days when the air is so bad, only being allowed to go outside for less than a minute and with a mask. K and I haven’t been able to go on bike rides or just wander. Going shopping with my mom is more of a task than fun, as we have to take many breaks while strolling through a store like Target.
With all of these crappy feelings, I’ve also had moments of happiness. My original weight loss patient has worked with me for a year now and has lost ninety pounds, through exercise and a total lifestyle change! My best friend is getting married in just under a month and I’ve been really preoccupied with flowers for her marriage. My mom and I visited the Walt Disney Family Museum while in San Francisco for one of my appointments; it’s a magical place. On that same trip, we saw a replica Mutts Cutts van from Dumb & Dumber. We were in Little Italy picking up the most delicious tiramisu, because my appetite has been all over the place and espresso infused pastry seemed like a great idea at night.
I will always continue to say that I do not want pitty or sympathy from anyone encountering these posts, as I’ve heard from a number of people that what I write makes them sad. That is not my intention. The purpose of this blog is to give you all a small insight into the life of twenty eight year old terminally ill woman. I have a social life (sometimes), I work a full time job and attempt to live a somewhat normal lifestyle. I have bills (BIG BIG bills), responsibilities and struggles just like someone else my age, the only difference being that my life will be cut extremely short. I don’t belive for one second that my life will be void or not meant to teach the world that ‘normal’ looking people have real illnesses and that it’s not all made up.
I appreciate all of the continued support and apologize for not writing sooner, it’s just felt like a chore and that is not what I want this to become. Love you all.