How I start my daily routine. I have to let the coffee get cold. I vomit if it's hot. The medications make my stomach ache. My carb intake has quadrupled in the past few months, because some days that is all I can keep down. Starchy, bland breads and pasta.
I'm dizzy. My head hurts. My vision in blurry. All these things are "normal" for me. One medication, the anti-seizure one, has to hit my system with caffeine before I feel alittle better. But I have to choke down food, to choke down the pill. Pouring cereal while a room is spinning...all while smiling and pretending you're ok is not always easy or possible. I've laid on the kitchen floor in tears, scaring the dog, waiting for my medications to kick in. Close one eye. Close both eyes. I can navigate my house and do just about anything, with my eyes closed, thanks to my shitty eyesight. A skill that comes in handy on mornings like this one...
My balance is like a newborn fawn. On glass. In high heels. I stumble, I fall. I get dizzy. My legs are ridiculously weak. My spine is doing some weird shit where I get spasms, randomly...even when I am still. I can't even take tylenol for normal aches and pains...because of interactions with other medications. So I have to go to Physical Therapy twice a week just to be able to keep standing without passing out and to try to figure out how to stop the spasms. My Neurologist, who coincidentally was just kicked out of network (no surprise there!), can't make the connection between the Megacistern Magna in my my brain, the cyst/tumor thing in my sinus cavity and the issues with my spine. He's treating just my migraines and dizziness. Not even the ocular ones! Thats another doctor...
So, twice a week: Physical Therapy. Once a week: Neurology...to get shots up my nose. Add, once a week...an ENT. That's right! I get to see an Ear, Nose and Throat Specialist because of the placement of one of the "things" in my head. He likes to shove cameras, random equipment, medications and needles up my nose, too. And he isn't one for small talk...so I have no idea what the fuck is actually going on. Or what to expect from treatment. I don't know if it''s technically a cyst or tumor...I've seen both on paperwork. I don't know if I'm going to have surgery. I got put on 2 more medications.
So, 4 appointments a week...4 daily medications, (7 if I actually took all of the ones I'm supposed to) and I still get dizzy, am weak, can't work, can't be on my feet too long, still have migraines, still have things growing inside my brain...and I still don't have any answers. That's the frustrating part. I dont' know what is going on. If I need to have one of more of the cysts removed...fine. do it. If I have cancer. tell me. let me deal. The waiting game and the general lack of "give a damn" is frustrating!!
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I know that I don't usually write such negative things. Yes, I write TMI posts sometimes on what's going on with my health. It's easier for me...because I don't like actually saying things. Out loud. I'm not the kind of person who is going to pick up a phone and call you and catch up and babble about my issues. But, I am always here, if you need me to listen to you! Any of you!! ((hugs))
Read it if you want. If you don't...no worries. I just needed to vent. I'm frustrated. I'm frustrated at how I feel everyday. No, I'm PISSED OFF at how I physically, feel everyday. You know that feeling you get behind your eyes when you have been staring at a computer screen too long? That dull, ache in my head...that's how I feel 24/7. With spikes of my head in a vice.
I try to focus on the positives in my life right now. Because, there are alot of them!! My kids are doing great. I'm in a wonderful relationship...life is really good! I just feel like shit this morning and had to get on my "pity pot" for a bit.
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