This week has been one of the absolute worst weeks ever. First being told that my condition is “just a congenital birth defect and I do not suspect will warrant any further treatment.” I have been in nonstop neck and back pain continuously. I’ve fallen and skinned my knee because of my balance issues. My memory is worsening causing me arguments with my boyfriend over stuff I’ve forgotten because I’m also very stubborn and used to having a great memory.I found out that my Papa, my mom’s dad, had a really bad infection in his elbow and had to go to the ER multiple times.
Then I was let go at work because if I were to get bitten, scratched, or catch a zoonotic disease it could delay my surgery or worse. I have been forgetting to do certain things and the pain of being on my feet all the time, cleaning, and trying to restrain pets at work was wearing at me. The animals, however, gave me much joy and happiness so I am extremely saddened. Also, I have no source of income at this point. My boyfriend is already on unemployment, so we aren’t in the best position at this point, but he assures me we will be just fine and I shouldn’t worry.
The following day my boyfriend’s car broke down with me in the backseat after we had just bought groceries. I got nauseous and threw up in the parking lot we were stuck in. We had to have it towed and get a shuttle ride because everyone who could’ve given us a ride was out of town.
That night I had to leave class early because I was in so severe pain that I began to cry. I went straight to my moms house and laid on the ground bawling. I decided then I needed some painkillers and would get an appointment the next day instead of waiting up at the ER. I took my muscle relaxer and old pain killers from my surgery back in 2013 praying for relief.
I then found out that same night some devastating family news that crushed me. I began doubting my self. My thoughts began to stray and I fought hard to stay positive. Insomnia was horrible practically every night.
The next morning I went to school took a muscle relaxer because of the pain and had to call my boyfriend and mom to pick me up and drive my car back home because the meds did not wear off as soon as thought they would. I called my neurologist despite her earlier judgement and left a message telling her I needed pain medicine because of sever neck and back pain. I had a psychology appointment and cried my story to my psychologist who I’ve been seeing for four years and love. She assured me I was going to be ok. My neurologist called me back mid appointment to tell me she doesn’t prescribe pain medication and I have to see my primary. I thought this was a bit ridiculous because this was a side effect of the malformation of my cerebellar tonsils. My psychologist told me she was so proud of me for standing up for myself because she knows how hard it is me to fight back.
So I called my primary’s office to find she was on vacation but I could see a nurse practitioner instead. I asked if they could prescribe pain meds and was told they can consult with a doctor and could.
After another restless night I went to my appointment this morning. I was told that I should see a psychiatrist, which I do believe to be true, but is not my primary issue at the moment. She told me to keep taking muscle relaxer. I cried and told her I can’t sleep, I’ve been in constant pain. She said she would consult with a doctor but could give a shot of toradol which helps for 6 to 8 hours. Frustrated I left. I told my dad who took the liberty of calling the office mangers of my neurologist and the nurse practitioner and basically telling them it was unacceptable for me to be in chronic pain and have to wait because my primary is out of town. My neurologist decided not to prescribe after being told she would be reported to the board and my insurance company because she took me on as a patient and didn’t even follow up with me on my MRI findings. So she is no longer my neurologist. I officially fired her. The office manager of the nurse practitioner’s location was much more helpful and got a pain script put in for me right away.
This whole day I had intended traveling out of town to Livingston to visit with my dad. It has been awhile and I miss him. Last time I went down was before school started. We were hoping to leave right after my appointment thinking we would leave with a pain prescription.
So around 3 I go to HEB pharmacy: the rx is marked urgent and the technician assures me that it’ll be 30 minutes. So I ask him to call me as soon as it is ready. At this point my boyfriend and I are extremely frustrated. We head to get food and decide to wait to leave until I finish my homework and get a call from HEB. I finish my homework right before 5 and call HEB pharmacy as we drive up to pick up my prescription. At this point I’m in pain. My neck begins aching. I’m told it hasn’t been filled yet I tell the lady I had come by at 3 and told it would be filled in thirty minutes. The lady apologized and told me she would get someone to check me out so I didn’t have to wait in line again. While I’m standing at the side a red headed older lady tells me I have to get back in line which is ridiculous. She says she has been here all day and that she hasn’t had an urgent script (basically calling me a liar), I tell her that it is unbelievable that I had to wait in line when I was told it would be filled at 3:30 and ask to talk to the manager. Of course he’s not in. I’m in horrible pain at this point. I wait in line fuming. Ten minutes later when I get to the front with the cashier, she can’t find the prescription anywhere. She looks in the filing cabinet and multiple trays and consults three different individuals. The crew are all looking over at me because the red head lady is whispering to them and I’m beginning to tear up from stress and pain. The pharmacy technician finally finds it because the girl I was on the phone with put it aside to be checked out early. (So I didn’t have to wait in line) I talk to the pharmacist who was very professional and kind and tells me she is so sorry and that it was completely their faults. She states that next time I should ask to see a pharmacist and not have to wait in line when the medicine was marked urgent and I was in extreme pain. I’m just crying my eyes out and my boyfriend walked me to the car and helped me calm down. Now we are finally on our way to see my dad after a day of hell. We will be arriving almost 12 hours later than we had originally planned to. I have my pain medication that took leaps and bounds to get and I’m exhausted mentally, emotionally, and, of course, physically. I have not strength left to fight against anyone. I pray that God give me the strength to continue on. The things I am thankful for this week: 21 shirts being sold to wonderful individuals. I didn’t think that many people cared about me. I found another lady in central Texas through a mutual friend who is an expert in chiari malformation and is in the hospital fight now for a third brain surgery. She has had so many more complications than I have including hydrocephalus, syringomyelia, and a cyst blocking the flow of her CSF, but I can finally talk to someone who knows first hand what it is like. I can ask her questions about the surgery and it gives me peace and reassurance to talk. My dad’s perseverance to make sure I’m taken care of when I don’t have the strength to do it myself. My mom and my boyfriend taking care of my fragile broken state. My best friend for talking me out of a crappy mood and being there for me. Finally, the end of this week I am thankful for.
End of vent.
-Cass, chiari fighter, bullying survivor, and surviving life’s tornado.