Since I wrote last I've had:
- 7 sessions of plasmapharesis
- 1 permacath surgery
- 2 trips by ambulance to the ER in 1 week
- 1 hospital stay
- 2.5 5-day infusions of IVIg (I'm on the third one currently)
- 1 rained-out art festival
- 1 visit from a high school BF
- 1 emergency visit from my mother (on the 2nd trip to the ER)
- bi-weekly physical, occupational, and speech therapy sessions, and
- 1 break-up
- doubled my dosage of anti-depressants even though there are still things and people that make me smile
- taken 10 steps forward, and at least 5 back (cliche noted and accepted)
- received two original hand-made canes for neurochic from 80-some-year-old woodworker, Bart Davis
- filed for social security benefits
- worked with my rheumatologist to find a method by which I can tolerate the chemo
- used a Barnes & Noble coupon to get an amazing deal on some art magazines
- was forced by circumstance to communicate with my ex-husband who despises me (how can anyone (other than the sick person them self) hate a sick person?!)
- watched my cheeks puff to Biggie-Sized proportions
- collected my south-bound traveling hair, aka alopecia and
- used a knife to cut vegetables for the first time since I got sick
Despite all the progress, the full-time-ness of my sicko existence, and the ideas and projects I have splashing about in my mind, my Transverse Myelitis (TM)-Meds-Situational depression has blossomed...like my cheeks. If it were just the puff face, my vanity could handle the blow(fish...couldn't resist the pictorial pun), but this cluttered mind is overwhelmed and underwhelmed.
I'm sleeping my life away.
I'm bored with being tired.
I'm tired of sleeping.
Can anyone relate?
At my last doctor's visit, he said to expect another year of life as it is - symptoms, side effects, treatment I assume. Can I handle this? On some days, I think why not. On other days, I want to turn my tremors into an earthquake just for some excitement. Alcohol doesn't even bring me pleasure anymore...I'm too tired and nauseous for it.
Without wine, what is there?
And let's talk self-esteem. I am not used to this low self-esteem thing. And all because of some puffed up cheeks, an errant right side of my body, tremors, and myoclonic seizures of my entire body and vocal chords. Am I vain or what? Or is it deeper than the way I present to the world? I think it is. I know it is. But isn't it obvious - my mortality has taken a serious beating to its ego, and the "not drinking" to drown out my sorrows isn't helping.
But really, I think it's a triple-decker issue of pain, cognition, and time. All of which make expressing myself visually rather than verbally, more enticing. When you don't know what you're doing (as I have no clue since painting is new to me), there's excitement, doubt, questions; it's like a game show and I'm the host. It's like having a job that challenges you, which in my neuro case, isn't possible to any degree.
So Why Haven't You Written?
Because my life sucks, and I don't feel like I rock at the moment. I didn't want to disappoint you with my own disappointments. I'm Melanie, the optimist, the glass 2/3 full girl, the glamour gimp. Invincible, unstoppable Melanie. I didn't want to present the ugly side of me - the 'roid-raged-engorged-faced-chemo-nauseated-TM/meds-exhausted-barely-enough-energy-to-feel-sorry-for-herself-Melanie.
But here we are, guests at my pity party, and what does that get us? A real person, with real emotions that tumble and turn like laundry if I could do it myself.
Painting: "Puffy Cheeks" by Me