Verbal diarrhea alert. This post is all over the place. Proceed at your own risk.
My birthday is in August. Usually August has something fun happen – or it’s just same old shit different day. This year August has had all kinds of things happen. If July had dragons, I’m not sure how to describe August.
The NIN/Soundgarden concert we went to was fun and exciting and awesome. (Trent Reznor is 49 years old but moves around the stage like something else.) The two different trips to the ER because of anaphylaxis was not fun, or exciting, or awesome. In fact it was down right fucking scary. Twice recently I’ve woken up happy to be alive, while at the same time being depressed at the state of my health. I want to see things get better. MS may be the hole in my head but I’m not going to let it control me. However, when the MS works with the depression, they make quite the team.
Some things have improved. Some things have not. After having the anaphylaxis reaction a few hours after receiving general anesthesia, I’ve since learned that I must be forceful and pushy with doctors to make sure they understand histamine intolerance AND how it relates to what they are doing. I can’t just explain histamine intolerance and assume they will apply their training and critical thinking to what I’ve told them. Maybe I should give quizzes.
I’m a special snowflake zebra – or a donkey. Those hoof beats you hear are definitely not from horses. After the one appointment next week – post – op visit – I’ll be back to multiple doctor appointments a week for awhile. Still, I continue to be a full time patient. I do not care for this being part of my identity. I’d rather identify as a full time writer.
I guess it’s because of our American society – but I keep wishing for some medicine that will bring my immune system in check and let me live something like a normal life… without possibly dying the next time I try a new medicine.
At some point I’ve gotta get a break. We’ve gotta get a break. There’s too many shitty things happening. I’m trying to make my way through all this shit and frustration and confusion… but the universe is not making it any easier. It’s not like I’m just sitting here waiting for things to fall in my lap either. Too stubborn for that. Besides, if I waited for things to fall in my lap, I’d probably be allergic to them. Maybe I just need to find a doctor to write a book on me. Or something. Too bad you can’t make money off of being a case study.
Speaking of money I need to find out about getting my student loans forgiven so I have no idea if and when I’ll be able to work – let alone work full time or IN MY FIELD.
I might still be working through the anger part of acceptance….. As part of that I’d like to find a bit of lyrics from a NIN song that apply to how I feel and get a tattoo. I won’t be the first or last person to want a NIN lyric as a tattoo.