I am always in some sort of pain. It really does become something you just get use to. It really is the only choice (for me) when no other form of therapy relieves the pain. I just live with the fact that I will always be in pain.
This photo was taken on August 22, 2020. Still experiencing a lot of emotion these past couple days but to say I feel really blessed I do not remember the pain from brain surgery is an understatement. I. DO. NOT. REMEMBER. THE. PAIN. I see photos like this and know I felt pain and I remember saying, “It just hurts!” and breaking down in tears but I do not remember feeling the pain.
This year, the pain is all in my heart.
In other news, my super cute little nephew, Bradley, FaceTimed me yesterday. It brought some sunshine into my cloudy mood.
Last year I had every intention of blogging throughout brain surgery recovery… but I didn’t. I do not remember much about recovery but I do remember not having the energy or drive to blog or journal. So now a year later I feel I owe it to myself to record my feelings.
I think I expected to feel a sense of relief today. But today has brought back so many emotions and not even good emotions. I still don’t feel like myself. I do not know who I am anymore.
Seeing photos from last year have made me cry, cry all day. This was the most amount of fear I have ever felt. I was not allowed to have anyone come into the hospital with me. Literally dropped off at the curb. It was so scary. After surgery I just wanted to talk to my parents and had no way of communicating with them. It was so lonely and terrifying. A feeling I think about often… a feeling I can not forget. It is hard to feel THE feelings. Truly hard. And now I have 8 weeks of feelings I did not journal last year. This is hard!
Friday seemed like a whirlwind really quick day. After waking up off and on all night, the nurses came in around 6:00am to remove the catheter and IV fluids. We went for a two lap walk and then I sat in a chair for 15 minutes before the pain became way to unbearable. By 7am both the OT and PT had stopped in to set up a return time. I had a delicious fruit cup and hard boiled egg for breakfast before the OT lady watched me put on socks and brush my teeth. The Physical Therapist said every report he has gotten was that I was good to discharge. So by around noon my parents were waiting out the front door and I was being discharged with 8 new medications.
I fully expected my ADHD self to go crazy sitting in the hospital room alone but it was so nice. No TV or music on, just peace and quiet.
This day just seemed fast but I just remember the whirlwind, all the blood work, all the visitors and being so excited I could slowly reposition my self in bed. Surgery day I felt like one of my residents being repositioned. I couldn’t even push myself up with my hand arms.
Every bump on the ride home was scary…. Downtown Seattle to Covington seems like such a long distance. But it felt amazing being out in the fresh air. We stopped by two pharmacies to pick up meds and I walked around with my lovely bandage. No shame in a big zipper down the back of your head, right? And not to mention the braids were horrible!
I got home, tried to eat but was still sore from the breathing tube. I laid in bed and rested for a while doing anything to stay comfortable. I really do not remember much about day 2.
I don’t think I need to remind anyone how crazy it is in the world at this moment with CoVid. Having to be dropped off at a curb to check myself in for brain surgery without someone with me was hard. It was hard knowing my parents couldn’t sit in the hospital waiting room and wait until I was done. I cried checking in, cried walking the halls, cried getting gowned… and cried every time someone said it would be just fine. From the moment I walking into Swedish hospital all the nurses, doctors, surgeons and techs were absolutely fantastic. Although I was still scared, they were just incredibly fantastic and supportive.
Something I have always known is that I have stubborn veins and arteries. It is not easy to get an IV placed. My sweet little check in nurse placed one on the first try but you can see the reaction in that location. The plan was to just start another IV after I was under anesthesia. Lots of people came and asked questions the two hours I was in prep. Same thing over and over again. The date, location, where I was, what I was doing and finally a nurse who shares my name said it was time. She asked about what I did for a living and where I worked. Talk about a small world when she told be her mother worked for Aegis Living at the home office. I knew her mother and it really immediately calmed me down as if I was with a weird family member. We finally made it to the OR and about 15 people were all moving and running around. We started talking about music and what I would like to fall asleep with. I commented no rap or heavy metal and ended up with the song I listen to make me happy. It is called “Music, Music, Music” by Teresa Brewer. It is an oldie but just lifts my spirit. I heard maybe 15 seconds of the song and then remember waking up to someone telling me I did great and it was time for a CT Scan. I was incredibly loopy but I remember being disappointed I didn’t get to hear my song. After the CT scan I was taken to my room and the nurse told me she just got done talking to my mom.
I asked if I could have my phone and the nurse said it would be about 5 hours before they could bring it AND I could only dial numbers that were local. I tried calling my grandma to talk to my aunt and let my parents know I couldn’t call. My grandma couldn’t hear me with my sore throat from the breathing tube. I tried calling my boss to have her tell my mother, but the nurse came in so I hung up. I just wanted to sleep and cry. I needed help to turn in bed and even pour myself ice and water. I kept dropping the ice down my hospital gown because I couldn’t aim or lift the spoon. So while I waited for hours to be able to communicate with family I slept and took lots of naps. I counted the number of cotton balls from IV pokes and wondered in the 3 seconds I felt I had slept how they shaved my head, inserted a catheter, placed new IV lines, braided my hair in six ridiculous looking braids and opened my head. I ordered dinner, grilled cheese and chicken noodle soup. It turned to paste in my mouth and I could not eat. It made me so nauseated. Around 7pm I got my phone back but visiting hours were over. And I was too emotional to even FaceTime my family. Around 7:15 they got me up for a walk and then back to bed I went where I could stomach fresh fruit, meds and actually could start turning myself in bed. I mean it took about 15 minutes but I did it. Every three hours throughout the night they woke me up to make sure I was okay. At one point my monitors were going crazy and I dropped my call button and had no way of getting a hold of them or finding the call light. I finally called the operator and just needed oxygen put back on. The past couple nights I keep checking my O2 stats as they are ranging between 88-91% while I sleep. That is all I can really remember from day one.
When I was a child my parents told me I had a serious disease. One day I marched into the Nurse’s office telling her I was really sick and my parents told me I had hypochondria. I just think I am a homebody and wanted to be near my parents. I admit sometimes I can be a little dramatic… most of the time I am joking. But these past couple many years I have had weird symptoms. Symptoms I thought for sure I must be making up because they are so broad but symptoms that were horrible. I just worked through the pain and discomfort because I had no choice. I lied through the pain and brushed them off making them seem small. But something was wrong. It felt wrong and it was frustrating. In my mind at times I was having a stroke. Or had early on set Alzheimer’s (minor hypochondria). But it didn’t stop me from going to work and working hard and doing a great job. It didn’t stop me from serving my seniors and working long hours to ensure they had a good quality of life. I didn’t want to complain more than having a bad migraine because I didn’t want people to think I was “faking it” and I know some people suffer so much more. Maybe one to two years ago I decided I deserved to feel better. I went to a neurologist, tried more medications and still did not have relief. In fact over the years I had tried 35 different medications without relief for my migraines. Last December I had 2 MRIs and 2 more in February. No tumors we’re found and I was grateful.
But, these symptoms?
-Migraines- the worst headaches, oh, the pain… enough to make me cry. It is so hard to explain and unless you have felt it you might not know. The pain and headaches that could not be controlled by countless medication trials.
-Neck and shoulder pain- they always hurt. Always. Lidocaine patches, medications, muscle relaxers don’t touch the pain or loosen the muscles. Chiropractic care and PT made it worse.
-Balance, dizziness, and sleepy arms- Daily I walk into walls. I can’t help it. I just accepted the fact I am a clutz. Recently I passed out at work. Missed a couple steps in the Harry Potter closet from blacking out. I can’t sleep at night because my arms, legs, and shoulders fall asleep off and on ALL night long.
-Swallowing- sometimes I literally forget how to swallow. It is scary. I panic when it happens. I can not remember how to swallow. The muscles do not work.
-Extreme Nausea and horrible gag reflux- I throw up a lot. I am nauseous a lot.
-Word loss- sometimes I forget proper nouns. When my head hurts a lot of words just disappear. Names of family and friends I have known my whole life. Names of places. Just gone.
-Memory Loss- there are holes. A lot of holes. Like years of my life just disappeared. (The last two symptoms are what really made me think I had a stroke or Early Onset Alzheimers).
-Insomnia- this might be genetic though. I can go weeks with 2 hours of sleep a night. It is miserable to be awake when you just want sleep.
-Vision problems- eyes feel like they are popping out of my head at times, seeing stars frequently, night blindness.
Weird symptoms, right? And symptoms from my head to my toe. They do not seem like they go together. It literally made me feel like I was crazy. Like I had a mental disorder where I was making it up and feeling these pains and miserable symptoms.
But the MRIs did show something.
They showed a Chiari Malformation. Something I probably had my whole life and just lived with.
Mayo Clinic defines it as “a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.”
In February my neurologist suggested I see a neurosurgeon. I had an appointment scheduled the middle of March but CoVid happened and my priority was keeping my oldies safe. The beginning of July they called to reschedule. July 7th I met with the neurosurgeon. He said no surgery. July 8th he called me back and said after looking over imaging more closely he recommended surgery. I had a 3rd virtual visit with him on the 10th and on the 24th met him in person to schedule surgery. To say it was a roller coaster ride in July is an understatement. A lot of emotions I will write about later. Although my brain tissue herniation is relatively minor, the back part of my foramen magnum is putting pressure against my cerebellum and pushing it into my spinal cord. The is very little to no cerebrospinal fluid flow between the posterior foramen magnum.
It is kind of a relief to have some sort of an answer. So treatment? August 20th I have brain surgery scheduled. The operation will remove part of my skull near the foramen magnum to make room for my brain.
I like to explain it that I just have a big brain.
Hopefully these next couple weeks I will be better at recording my feelings. I want to remember conversations I have had the past month.