Uncategorized - WhirlyBrain

Back from Mayo, but where did this all start?

I just returned from a week long visit from Mayo clinic for a Cerebrospinal Fluid leak blood patch. This was attempt number 5, well 18 actually. I’ve had 18 blood patches, 12 targeted and 6 blind. What on earth is this all from? How did this happen and where do you go from here? Yes, those are the questions I get asked but honestly those are the questions I ask myself.

My entire life changed with in late February/early March 2020. Yes, 2020 – it was a horrible year for everyone. My husband and I, along with our kids all traveled to meet my inlaws for a fun weekend away Valentines 2020. We all stayed in a nice hotel in Fayetteville, Arkansas. We ate dinner out and even did some axe throwing (not at each other of course.) I had not really been feeling my jovial (yes, I happen to be a very jovial person) self the entire weekend but not wanting to be the Debby downer really just pushed through the yuckiness I was feeling. I did end up with a headache the last night and went to bed early letting the others enjoy time together.

We had a great visit and when it was time to head back home we all went our separate ways. My inlaws and nephews headed back to Eastern Arkansas. My oldest and her husband in their car and my husband and our two youngest in our car headed back to Missouri. We had lived in this area previously and we were enjoying seeing how the area grew. We were about 20 minutes into our trip when suddenly I was struck by horrible side pain and knew immediately it was a kidney stone. There was no way I would make it home and so we shuffled the youngest with the oldest to continue home and we headed to the local Emergency Room. The worse part of this story still in my mind is that as we got almost to the hospital I knew I had to vomit. My husband pulled over as fast as he could. He ran around to my side and opened my door just as I turned my head the other direction and vomited all over his 2 day old truck. Yep, brand new truck and instead of just turning my head to the right and vomiting out the door, I turned my head to the left and vomited all over the truck. Still to this day I have no idea why and I still feel so guilty. He was great though, loaded back up and went the last block to the hospital. As I suspected, it was a kidney stone. After being hydrated and medicated they sent us back in the truck to head home to our own local hospital. I have no idea if this kidney stone and the following surgery had anything to do with my leak but it was directly after this that my symptoms began.

After getting home from surgery and settling in to rest and recuperate I ended up developing a pretty significant bilateral pneumonia. Mixed with a small untreated bladder infection that had been going on I again ended up in the hospital two weeks later. During that last few days before finally going to the hospital for the pneumonia I had noticed a strange headache. It felt like someone was squeezing all the blood out of my head and it was building pressure so bad along this horrible “whooshing” sound in my ears. The pressure would pulsate getting worse with each pulse and the noise from the “whooshing” was so unbearable. I remember being in the emergency room at this point not as concerned about my breathing or bladder infection but this PRESSURE and whooshing that, THAT is what my overwhelming complaint was.

I spend the next 7 days in the hospital being tested 4 times for flu because I was running a fever, my O2 saturation stayed in the upper 80%. I had a headache, body aches and no appetite. This was the beginning of the Covid – 19 pandemic and they really were not testing anyone for it unless you had specifically come in contact with a positive case. I was not tested for Covid, but was basically guaranteed by my follow up physician that this is what I had.

This was the beginning. It was from this point that my search for help with this “postural upright” headache and “whooshing” (now diagnosed as a Cerebrospinal Fluid Leak) began. I returned home from my latest attempts at a repair one week ago. I lay here in my bed full time again. I will begin to spend my time going back to document my entire journey with you.

Today I don’t want to be brave

Uncategorized / By Whirlybrain

Today I don't want to be brave

I haven’t been here in a hot minute. Partly because my life has been very busy with holidays but honestly I don’t feel good and I have terrible fatigue. I look back at my blogs and I realize I put on a happy face (sometimes too often.) Maybe too often. I want to be brave. I want to face everything with a positive outlook. I don’t want to be the one who people say “Damn, she complains a lot.”

There is a huge history in my family of “categorizing.” We’ve put each other into stereotypes…I think that is the word I’m looking for. Categories such as if one is emotional they are called “needy” no matter the circumstance. There is “the fat one” and they are the one everyone compares against. The biggest one is the “hypochondriac”. That’s a big one in my family. Placing a person in a category is dangerous and it becomes even more so when it’s done by people who you are supposed to trust. The danger in growing up with a hypochondriac category in your family is that an illness is always put in doubt. My family has a history of very serious physical illnesses; the type of illness that should be taken seriously. However, if you have multiple illnesses followed by complaining about another symptom you were placed in a category. You were “a hypochondriac”. The typecasting that “you are just looking for attention” became a standard statement when someone complained of illness while I was growing up.

I just happen to have been the “needy” one and the “fat one”. Those are dangerous typecasts but as you grow in life you learn that the position you were placed in as a child is not who you are as an adult. The one I began to fear was being placed into the dreaded “hypochondriac” category. That category was seen as a vulgar mental illness and having it pinned to your jacket meant that it could ever be removed. No. Matter. What. I look now and realized that I watched it happen to one of my family members who in the end had an absolute problem and it kept them from being diagnosed properly.

I have lived in constant fear of being placed in that category all of my life. The horrible condescending feeling that was dispersed upon that person actually made me fear belittlement and shame.

I have an actual physical illness. I have a very serious illness with incredible side effects. There are people who have it much worse than me, I know that. Because of the fear of being in placed in the hypochondriac category though, I hide as absolutely much as possible. I suffer in silence. I don’t let people in my life know just how serious it is. I’m ashamed of looking weak, or making more of my illness than those who may be more ill than me. I do this to my own detriment. I do this to the point that with every doctors appointment I am “sure” in my mind they will find nothing wrong. Whether I want to say it out loud or not, I am not well and they do keep finding things wrong.

Today I am going to complain. Tomorrow I am headed to Mayo Clinic in Rochester. I want this so bad. I want to be fixed. I don’t want to live with this illness any longer.

Today I am going to admit I’m not brave.

Wait. Where did my videos go?

Uncategorized / By Whirlybrain

Wait. Where did my videos go?

For those of you who are new here but read the About Me section, you will see that I have issues related to brain fog. Along with my brain fog I have had six major concussions in my life (unconscious more than 10 minutes), followed by two traumatic brain injuries within a few months of each other requiring rehabilitation to walk and talk again, among other things. With a traumatic brain injury, wires get kind of crossed or even connections lost. There is a lot of relearning and regrowing those connections can do but you have to exercise them. To keep those connections exercising, I work puzzles, play mobile games that make me find things, try to follow recipes, and keep a calendar.

I am an avid LEGO builder. I love LEGO. I discovered them again in my adult life while watching different streamers on Twitch on the days I can’t get out of bed. [*Side note: A streamer? Twitch? According to Websters dictionary a Streamer is: a flag that streams in the wind especially : PENNANT b: any long narrow wavy strip resembling or suggesting a banner floating in the wind.]

That is not the type of streamer I am talking about. Twitch is a service that streams individuals on a live visual stream that you can react with in a designated chat section. It’s a streaming service somewhat like YouTube. You can use your web browser or download an app. It became popular for gamers to stream themselves playing games for people to watch along with them, however it has grown into hundreds of categories besides just video games. LEGO builders use one of those categories.

I actually started watching my son stream games that he plays online. There are many people that sign in and watch him as well. You can chat with others about the game or just simply about life. Oftentimes the streamer interacts with chat as well. If you are stuck lying in bed in your room, you don’t get a lot of human interaction unless all your friends are available.. If I am watching someone stream there may be others on there from all time zones across the world. It’s a safe place to chat and you control the amount of information you want to share. I have made many friends and have even talked to a few outside of the chat room on a more personal level about things like arthritis, for example. What does this have to do with LEGO you ask? If my son was not streaming I would browse around for other things of interest to watch. I watch a wide variety of things from knife making to cross stitching. Interacting with these streamers gives you an outside connection. They usually tell you about their lives, show you how to do specific things or just chit chat along with everyone else…..ahh, adult conversations.

After wandering upon a LEGO streamer, I noticed that the instructions are in picture form. If you have brain fog or damage in any way, you will know that following instructions, both verbal and written, is extremely challenging. You have to read the instructions which typically have ten or more steps and then comprehend them before trying to remember what order they were in. Yes, that is very difficult for a person with brain fog. I discovered that the instructions in the LEGO set are pictures with arrows. You follow the directions shown in the picture to build the set one step at a time. There are small sets and very large sets. It’s an at-your-pace type of activity. You can work two pages or twenty and then take a break.

I decided that videoing my building sessions and posting them on my blog would be a good way to reach out to others who are having brain fog or issues, and explain how they help me, what I do if I run into a roadblock and show how it can be used for therapy. I have issues with fine motor movement, following/understanding directions and difficulty with pain in my joints and head.

I started with a very small set in my bed with a little table over me while I was lying down. Being able to take my time and manipulate the small pieces into a final shape was like finishing a race for me. It boosted my confidence and made me feel like I could actually accomplish something. Because I have to take frequent breaks (sometimes even days) I decided that I would not stream as that entailed “running the show” which is virtually impossible. So instead I decided to make these videos and post to my web page for others wanting to learn a new task, or even just have simple creative time.

My first video was just a small part of my build. I had to take several breaks and I am not able to splice different sections together (that is way beyond my brain gauge) and would have my husband do that part for me. I was excited to post so I just put up a small section that discussed ways to work around issues with brain fog or even physical issues with your hands.

I became very involved in this LEGO community and people stream amazing content. Have you heard about the 9,900-piece Titanic set? Yeah, I can’t do it but there are several who have. Suddenly my anxiety crept up on me. I felt inferior and was afraid I would look unprofessional in my videos and quickly my anxiety did take over. I chose to delete my videos and not do them any longer.

Two days later I was in a stream where the streamer was building a unique small project. He was building it for the LEGO #buildtogive campaign. You just simply build a star out of LEGO and post it with the hashtag to any social media. Lego will give away a set for every star posted under that hashtag to 1.5 million children in need. My streamer made a statement that resonated back to my videos. He said to just build what is in your heart with these stars. Don’t start comparing them to other builds. That is not the reason for this build and that is not the reason we build LEGO in the first place. He was right. Why would I compare my building videos with other streamers who do not have the physical or mental issues that a person with chronic illness has? I build LEGO because it makes my heart happy and I started the videos (perfect or not) to show others they can do it too.

My videos will return to my website within the next week. Thank you @Marvelousbricks! Here is the link to the LEGO information to the #buildtogive campaign . https://www.lego.com/en-us/build-to-give

If you want to take the time and look around Twitch, don’t get overwhelmed. I follow some great people and would recommend searching them up.

TheLocalBrickshop: Streams sorting LEGO and gives away free minifigures or poly bag sets every Wednesday.

AZpinoy: Streams LEGO technic typically building all of the cars such as the bugatti and speed champions racers.

Hyenaplus: Streams RPG tabletop games (role play gaming – like dungeons and dragons) and is about to sort some space LEGO

TexaxHulaMan: He is a woodworker. Has multiple cameras in his shot so you get to watch every aspect of the build he is making

I hope you find this as a new world opening up to you. Sit and watch a stream, interact, learn something you can do while you’re down or learn something you can do with family. Keep your journey moving. Love and Hugs to all.

Mental Health Should Be A Priority

Uncategorized / By Whirlybrain

Mental Health Should Be A Priority

Mental health has historically been seen as a “sickness of the weak.” The world has slowly started to see how many people have had a time in their life where their mental health took a backseat. People are not afraid to take their spiritual or physical temperature, but avoid anything to do with their mental temperature.

Your heart in your body is a very important structure. You feel emotions of love in it: your pulse increases,it feeds blood to your body parts that feel spirituality coming into their body, and it is the main source of your brain making clear decisions without even thinking about it. Your brain says: breath, move your legs, scratch that itch. But it also says laugh, cry, care. Your body is typically talked about when talking about your shell. Your spirituality is typically talked about when talking about your faith or beliefs. What about our brains? Why is it hard to talk about the job of your brain when it is such an incremental part of life?

Mental health is an urgent part of our entire working system. It’s wires and connections control everything your body and soul use. I would hope that from this post you do see that MENTAL HEALTH should be a priority.

I wonder if we called it something else? Because the word “mental” is associated with our weaknesses and not our accomplishments. Caring for your mental health keeps you healthy in general. What if we called it “cranial health” or “brain health”? Would people then see that the spongy soft tissue thing filled with fat and water is not just a regulator of emotion? Keeping your brain healthy keeps you in a forward motion…literally. When I talked about your heart, I talked about it being affected by emotions. Your kidneys are affected by your emotions. Your whole body is affected by emotions. Why would we not want to take the best care of our brain’s emotional connection to the body as a priority?

When I started taking an anti-depressant my world changed. I literally woke up one morning, stretched and smiled, and was so ready to take on the day. My neurons don’t fire in order. I need medicine. That does not make me a weak person. People with kidney disease wake up and take medicine. Their kidneys are breaking down. That does not make them a weak person. If a person had a massive heart attack, wouldn’t you want them to take their medicine? Would you be sure everyone around them knew that they could have an incident and to just be aware of it? So why would I not let my family or friends know I take medication for a malfunctioning neuron and could have an incident?

I’ve been on an anti-depressant for years. I’m not depressed. In-fact, I’m a very positive, happy person. That does not mean that I am going to stop taking my medicine. Just like you wouldn’t want the person with the previous heart attack to stop taking theirs. Why would we want to be unwell again? We both have proven that we have a disconnect in our body.

I once heard my six year old son say “I don’t want to be here anymore, mama.” That did not make me want to hide him away and not talk about it with others for fear of what they would think of him. It made me want to get him help, just as if he said he was having a hard time breathing. He was having a situational depression linked to an incident that happened in his life. After a few years of medication, he was able to stop. His neurons were back in order and he took on the world. He is productive, loving and very fun. He has lots of friends who are there for him just like he is there for them if they need help in a situation.

I do take my brain health temperature. I do see when I am feeling a bit out of sorts. I used to hide it from my family. I didn’t want them to see me as someone that needed to be cared for or tiptoed around. I tell my family up front and right away if I am needing a little extra time. They see that my brain health is connected to my physical health. I immediately talk to someone, write simple statements on my arm to look at for a day (such as stay grey, stay in the middle) and then I continue on. Sometimes it takes a few days, but by making my MENTAL HEALTH a priority I am living my best life. I wish the same for you. Love and Hugs to all.