BuJo

Digital Bullet Journal

Chauncey Watson

I enjoy journaling. It helps me to get out the thoughts stuck on repeat in my head and helps me to calm and relax myself. I’ve been journaling and writing short stories and poetry since I was a kid. While I haven’t written any poetry in a long time, I do still journal. When I am stressed or overwhelmed, journaling is one of the first methods of coping that truly works for me. During COVID, I was working from home as a customer service agent. That job is not for the weak. I dealt with loud, abusive, and angry people nearly every day for almost a year. I was so stressed out from it that my hair started thinning and I lost weight from not eating. I suffered from depression and anxiety. I dreaded going to work every day.

I stumbled across bullet journaling (or Bujo for short) while looking for ways to journal to support mental health. The Bullet Journal Method was created by Ryder Carroll to help him keep up with tasks and projects while managing his ADHD. It quickly took the internet by storm and suddenly everyone was doing it, putting their own spin on it by creating spreads that included trackers for reading, water intake, meds, exercise, and so much more. I decided to do the same, creating themed spreads for water intake, gaming, symptom tracking, journaling, and writing. I enjoy crafts so I would use stickers and stamps and stencils to make my spreads pretty and inviting. I was proud of my work and it helped me to identify patterns in my health in relation to work and hydration and sickle cell symptoms.

Recently, I’ve been having trouble using my hands as they have become swollen and achy. I’m not able to do all the crafting I enjoy to make a physical bujo anymore so I decided to go digital. YouTube has a plethora of videos of people making digital bullet journals and it is just so fascinating and cool. I need to save up to buy an iPad and iPad pencil as I determined that would be the best option for me. Going digital would be the easiest to manage as I won’t need to hold scissors or other crafting supplies and be in pain at the same time.

Digital bullet journaling is good for me as I can remove, erase, move, cut, copy, paste, etc. with the tip of my finger or pen. I can create and download stickers and graphics using Canva which has been kind of fun. I have been trying to build new habits where I use my bullet journal everyday to track my moods, doctors appointments, sickle cell symptoms, this blog, exercise, gaming, reading, and more. They say it takes 28 days to form a new habit and I am hoping I can form this habit during the month of May. I am using my laptop now until I get an iPad since it has a touch screen but it’s not ideal. Soon, I plan to start a podcast to discuss my experiences with chronic illness, mental health, exercise, and much more.

What would you use a bullet journal for? Feel free to share your thoughts and comments.

P.S. Have a condition that you want to share about? Or are you a caregiver? Follow my link to see if you qualify for clinical studies with Rare Patient Voice: https://www.rarepatientvoice.com/rp/ChaunceyWatson

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Give Yourself Space and Grace

Chauncey Watson

Some days my brain is jumbled and overwhelmed with all the things – this blog, household chores, my cats, my health, doctor’s appointments, bills, the list goes on. Sometimes I feel like I cannot take a full breath to calm down and I end up having an anxiety attack. Those suck, hard. In these moments, I have to constantly remind myself to slow down, pause, and go easy on myself. I am my own worst critic. I am so hard on myself all the time that it gets exhausting trying to keep with the myriad of thoughts flitting through my head all the time.

Last August, I was fired from my last job for reasons unknown and because it was during my probationary period there was nothing I could do to fight it. I had no warning, no explanation, just a quick thank you and good bye. I was in tears before my now ex-boss even coldly left the room. This was my dream job and in the space of 5 minutes it was gone. I have gone over in my head about what I could have done wrong or what I could have done differently that would’ve allowed me to keep the job but came up short every time. The library team told me I was doing a great job. I had support from them in addition to the positive feedback, so it was an extreme shock when they let me go. I walked out the building feeling like I did something wrong. It was traumatic. I could barely function for months afterwards. I wanted to die, and to be honest, I think a part of me did. To be told I was not a good fit without them giving reasons why was heartbreaking. I loved being a librarian.

I was speaking with my therapist about that day and she reminded me that sometimes we will never get answers. Shit happens and we have to somehow keep moving, keep going, keep pushing forward. No matter how much it sucks, we need to pick up the shattered pieces of ourselves and find a way to put them back together. My therapist reminded me to give myself space and grace. Space to acknowledge and breathe around shitty thoughts and situations and grace to move past them. Those shitty thoughts and situations won’t last forever.

Now, with the help of some medications, instead of spiraling down the rabbit hole of ‘what if this’ or ‘what if that’ or wanting to die, I take a few moments to acknowledge the racing thoughts. They are there, they exist, my feelings are valid, and then I do away with them. I pack them in a box and throw them off a bridge. I have given myself mental space and grace to deal with troubling thoughts and emotions thus preventing an anxiety attack and/or a depressive episode. It takes practice but it’s doable. I’ve come a long way these past 8 months and I am proud that I don’t immediately spiral into depressive episodes or think about dying. I still have my struggles and I probably always will but with this new job and my blog I hope to spread awareness about mental health and chronic illness.

If you remember nothing else, remember this: give yourself space and grace. Acknowledge those troubling thoughts and emotions, move/discard them, and calm yourself. You are strong, important, and valid. Create a safety plan, call 911 if you need immediate assistance or call the suicide hotline at 988 or visit the 988lifeline website. Seek therapy. It has saved my life and hopefully it’ll save yours.

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5 Tips for Managing Sickle Cell Symptoms

Chauncey Watson

Managing a chronic illness can be challenging. Between the pain, the brain fog, and the fatigue, getting a handle on it can be overwhelming and exhausting. I have to count my spoons throughout the day to assure that I have the energy to get things done. Since every day is different, meaning that different parts of my body can hurt at any time, I thought I’d share five tips I use on the daily to help mitigate my sickle cell symptoms.

1. Drink plenty of water

Sounds simple right? I love a good glass of cold water but drinking the recommended 64 oz a day was a struggle. As I don’t drink soda or juice that often, I have to drink water if I want to stay hydrated. I discovered liquid drink mixes at Walmart and they saved the day. Now I trick my taste buds into thinking I’m drinking juice all the time. But a word of warning: read the ingredients list before buying. Some drink mixes, especially powdered ones, can include additives or artificial sweeteners, such as aspartame or maltodrextrin, that you may be sensitive to, just as I am. My favorite drink mix is Walmart brand Great Value Tropical Pineapple Mango drink enhancer. I keep a few bottles on hand every month to go along with one of my 40 oz tumblers that I refill throughout the day. Staying hydrated can help to reduce swelling and tightness in the joints and hands, lead to clearer skin, and even sometimes keep you full, which may have the added benefit of helping you better manage your diet. For me, the biggest downside is the amount of times I need to go to the bathroom lol.

2. You are what you eat

Read labels. Read labels. Read labels. Before being diagnosed with Sickle Cell Anemia, I used the process of elimination where my mom and I slowly introduced different foods into my diet to see what I reacted to and what I didn’t. Allergy tests at doctors’ offices were negative but I was still feeling sluggish, itchy, and uncomfortable after eating. My mom and I started with leafy greens and veggies, then introduced meats and seasonings, beverages, and so on. We quickly discovered I was sensitive to potato starch, wheat, dairy, white rice, peppers, eggplant, tomato, and gluten. 10 years ago, being sensitive to all those things was devastating to me. I love food, especially sandwiches. For me, gluten and dairy free foods were disgusting. Not all gluten and dairy free foods were made equal. Read the labels! But those foods have come a long way since then. Now I can have a cheat day once or twice a week where I’ll have fast food or snacks with only mild irritation. Gluten free double stuffed Oreos for the win, am I right? Certain foods I won’t have at all like potato starch and white rice because they immediately cause pain and discomfort in my joints. They say you are what you eat, so check the labels, keep a food diary to help keep track of any reactions, and speak with a doctor or dietitian to see what works best for you.

3. Elevate your limbs

I have an adjustable bed where the head and leg portions lift up. I bought this bed specifically so I could elevate my legs, which helps to reduce the swelling and pain in my ankles and feet. I also cannot sleep flat anymore as I suffer from chronic chest pain, so my head is elevated. The angle keeps pressure, and gravity, off my chest and allows me to breathe easier. If you don’t have an adjustable bed, extra firm pillows can work as well.

4. Vitamins and minerals

Similar to tips 1 and 2, what you put in your body can affect how strong your symptoms are. I take fish oil and biotin for my psoriasis, but they have the added benefit of supporting my heart health as well as nail and skin health. My hematologist had me take ferrous sulfate tablets and probiotics and stick to a Mediterranean diet in the past, which has helped keep my skin clearer, promoted good gut health, and reduced the swelling and pain in my joints. Speak with your doctor about taking the appropriate vitamins and minerals to help mitigate sickle cell symptoms.

5. Advocate for yourself

Know your rights as a patient. I cannot stress enough to take the time to read the patient bill of rights you get when you see a new doctor. It’ll be buried in the pile of intake forms they give you but it’s there. You can even request a copy of it if you don’t see it. A doctor’s word is not law. It is merely a recommendation based on tests, conditions, health history, etc. You can go to more than one doctor and get as many opinions as you need to make an informed decision. You know your health and body the best, so advocate for yourself and your needs and wants. If you have a pain crisis, seek medical attention immediately.

I’ll share more tips and ideas as I learn them. And feel free to share with me what works for you. This is a judgment free space. Speak with your doctor or dietitian to find out what works best for you.

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Whole Again…Well Mostly

Chauncey Watson

In November of 2020, just before Thanksgiving, I came down with a horrible cough. I could barely breathe or talk without coughing. My ribs and chest hurt from the constant contractions and my throat was so sore. Because this was happening during COVID, I wasn’t able to see a doctor. Instead, I had to speak with a virtual doctor over the phone, which fortunately my health insurance through work covered. They sent some antibiotics and cough medicine to my pharmacy but after a week of taking the meds there was no change in my condition. If anything, I got worse, and my brother and sister-in-law insisted I go to the ER. I drove myself there, which wasn’t a fun experience and in hindsight was a bad idea. When I was finally taken to a room, they did x-rays and blood tests, where they found I had bruised ribs from all the coughing and bronchitis. They recommended an ENT doctor and sent me home with more antibiotics and a plastic breathing apparatus. I hated that thing and didn’t use it as I should’ve, but the antibiotics seemed to help. I still struggled to work and function and by the time I made it to my ENT appointment, my breathing was so shallow, they were concerned I was dying. I was unable to perform stress and breathing tests the doctor wanted so he started me on a medicine used to treat asthma because he thought I had asthma even though I insisted I didn’t have this condition. He barely listened to me and paid little attention when he examined me. It was frustrating.

I did not have asthma, but I did have an allergic reaction to the medicine. I nearly passed out and ended up paralyzed. I couldn’t use my legs, I could barely move my arms, and my speech was shaky and slurred. My roommate called an ambulance and I spent two weeks in the hospital trying to recover while the doctors tried to figure out what was wrong with me. One even accused me of drug abuse and tried to send me home! I ended up reporting him and getting a second opinion from another doctor. I had a severe allergic reaction to the Albuterol the ENT doctor prescribed and slipped into a pain crisis due to complications with Sickle Cell Anemia. It was bad. I was scared and hurting and frustrated and exhausted. I spent a month in a rehab center trying to learn how to walk, talk, eat, and breathe again. It was painful. I was sent home because my insurance decided I didn’t need to be there, so I had to finish receiving my therapies at home. I did occupational, speech, and physical therapy.

My roommate and brother did their best to help me, speaking to the nurses and visiting when they could. However, because I could not work any more, my roommate and I lost our apartment and I also lost my job. My car was repossessed. I ended up moving into my brother’s living room where my sister-in-law, who had experience as a certified nursing assistant and worked from home most days, helped with all my therapies and daily activities. My brother helped when he wasn’t working and I parted ways with my roommate, thanking him for all his help.

Speech therapy helped me to talk again. I learned how to form words and sounds again instead of painful moans and grunts. Believe it or not, the singing was my favorite part. You use quite a few muscles to make sounds and melodies. Singing the birthday song or the alphabet song was challenging yet fun. It also helped that I have a nice singing voice. It was sad to me when I lost the ability to talk because I enjoy singing. Physical therapy helped me to use my body again, specifically standing, walking, arm movements, and hand strength. I practiced regular exercises and movements to improve my grip strength and mobility. This was extremely hard because while my brain was firing, it was like my limbs weren’t listening. This whole process was painful too. After each session, I was always exhausted. As I got a little better, especially with using my arms and hands, I started occupational therapy and that helped me to be more independent with things like bathing, eating, cooking, and other daily activities.

It took nearly two years, but I am mostly whole again. I still have a bit of a stutter that comes out when I’m tired or nervous and limp when I walk but I can cook meals and bathe/dress myself and do other things that I could not before. It helped me regain some independence. I can’t speak enough about how humiliating and frustrating it was to need assistance with the restroom , have others cleaning me up, and just generally not being able to get my body to listen to my mind and move when I told it to. But I’m grateful for all the therapies and help I had along the way. I’m able to write this post feeling better and more positive about myself. I am able to feel more whole again…mostly.