Behavioral Therapy: A Casual Update

blog post
[Image shows three spoons laying on a laptop keyboard. Overlaid is a clip-art of torn notebook paper with a red paper clip. On the paper is the neurodivergent rainbow infinity symbol and reads “Behavioral Therapy: A Casual Update”.]

Over the last couple months, my therapist and I have been working on a lot of different things which she classifies as behavioral therapy.

We started with learning to identify emotions, having to journal everything I did that day and how it made me feel since we discovered I’m not good at identifying emotions besides “I feel awkward” or “I feel overwhelmed”.

So we expanded on those, and then started to work on identifying why I thought I felt that way. This was much harder since I often explained how I felt by “I just do”, but learning to expand on why I felt a certain really helped me understand some of my more irrational feelings.

And with that we started working on how what we think about a event can then cause emotions and how those emotions determine our behavior and working on changing our views about situations in order to better the outcome of our response to these situations.

We got a bit side tracked though after a few sessions where I was getting overstimulated and had to spend the last couple sessions finding ways of calming me down from my meltdowns. Which has led us to the next step in our therapy: Dialectical Behavioral Therapy. Which she tried to explain to me exactly what it meant, but was a tad bit confusing so she printed me off a booklet from DBT Skills Training Handouts and Worksheets by Marsha M. Linehan.

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[Image shows a stack of papers that read “Distress Tolerance Handout 1: Goals of Distress Tolerance” and then reads “Survive Crisis Situations without making them worse”, “Accept Reality: Replace suffering ad being “stuck” with ordinary pain and the possibility of moving forward”, “Becoming Free of having to satisfy the demands of your own desires, urges, and intense emotions”, and “Other:___”  ]

It talks  about when to use your crisis survival skills, such as when you have intense pain that cannot be helped or won’t go away (great for me since chronic pain is a normal thing), you want to act on your emotions but it will only make things worse, when your emotions threatens to overwhelm you, when you are already overwhelmed, in highly stressful situations, etc.

Then it goes into some skills or things you can do to help such as the STOP Skill (Stop, Take a step back, Observe, and Proceed Mindfully), making pros and cons on acting on crisis urges, TIP Skill (Tip the Temperature, Intense Exercise, Paced Breathing and Paired Muscle Relaxation), Distractions (Activities, Contributions, Comparisons, Emotions, Pushing Away, Thought, Sensations), Self Soothing with the 5 Senses, ways to improve the moment, and Sensory Awareness,

She wants me to practice at least two of these each week over the next couple sessions and find which ones help me and which ones don’t work. We have also worked on breathing exercises and grounding exercises which have both been helpful so far as long as I have someone else helping me through them, I have yet to lead them with myself.

But she is hoping for me to learn a handful of them before I go on my family vacation so that I can fully enjoy it with minimal meltdowns. While I’m not psyched about having therapy homework over the summer, I will say that I have never felt so good about therapy. Knowing why I feel the way I do, how it works, and how to counteract it and all explained in a non-cliche way that I can really understand and appreciate makes a huge difference. It’s been really helpful so far and I think that the more I work at it and the more I learn the better it will get.

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Packing for a Hospital Admittance

blog post

[image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of torn notebook paper with a red paper clip. On the paper reads “Packing for a Hospital Admittance” with a small blue backpack clipart. At the bottom of the banner is the URL for Thee Crohnie Grace Blog]

After forgetting a laptop charger and deodorant with my last hospital trip last weekend, I realized how important it can be to make a list when you pack to go to the hospital. From clothes to medications, there is actually a lot more things to take to a hospital than most people may think about.

First is clothes. Depending on the hospital and their policies, some places you will have to put on their hospital gowns, but it is always good to have clothes in case you do not have to stay in their gowns, and also so you have clean clothes when you go home. If you are not sure how long you are staying go ahead and pack at least two outfits.  It helps if your hospital is close to home and you can have clothes brought to you as needed, but not always the case. Always pack extra underwear and socks, just to be on the safe side.

Next is medication. If you are on any medication, make sure to take it all with you so doctors know the exact dosage of everything you are on. It is hard to keep tract of lots of medications especially on top of all the stress of being at the hospital, so this way is much easier. It helps to have a specific bag just for medication so you do not have to dig through all the clothes and other things to get to them.

Thirdly, the essentials. Despite being essential, it is still number three on the list. This should include tooth brush, tooth paste, deodorant, mouth wash, hair brush, things for menstruation if it is that time of the month. While they will give you tooth brush and paste and deodorant, it is just not the same as what you may have at home. Personally I find that their deodorant is not very effective against my excessive sweating brought on by Prednisone.

Then comes the comfort items, distractions, etc.   This is where you would include special blankets, stuffed animals, any special items that make you feel better, a deck of cards or colouring books to have something to do if you feel up to it, maybe movies if you know there is a way to watch movies or a book if you feel up to it. I typically bring crochet things because crocheting has become a mindless task to me that doesn’t require too much effort for me.  Some hospitals have activities available, this is more often at children’s hospitals and even then it can never hurt to have stuff picked out for you because you know you best. Also in this would include a laptop and laptop charger. Do not forget your chargers, folks!

 

So to recap and also create a direct check list that you can use when packing for the hospital:

  • Shirts (2): preferably comfy, loose fitting t-shirts
  • Pants (2): sweat pants or leggings or shorts are the best for comfort
  • Jacket or sweater: in case you get cold
  • Undergarments (3-4): you can never over pack on under wear.
  • Socks (2): In case they don’t have hospital socks that fit you well or are comfy.
  • Medication: All of them. Including medical equipment and medical supplies.
  • Tooth brush and Tooth paste: bonus if you get the travel pack sizes!
  • Deodorant: whatever works best for you!
  • Mouthwash: If you are prone to throwing up, more mouthwash is advised!
  •  Hairbrush
  • Shampoo/Conditioner: Dry shampoo also works if you are not able to shower!
  • Menstruation Stuff
  • Glasses case/Contact stuff
  • Chargers: phone, laptop, etc.
  • Headphones
  • Comfort blanket
  • Stuffed animal
  • Comfort/Security items: photos of family, special items with sentimental value
  • Coloring book and pencils
  • Anything else you might want!

 

Feel free to add more to your list as necessary or remove items that aren’t necessary. And I hope your hospital stays all go smoothly.

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[Image shows me laying in a hospital bed with my short red hair, purple flower crown, NJ tube, all hooked up to my IV Medication through my port, wearing a hospital dress.]

 

MediPort Surgery and Entyvio

Blog Post

[Image shows 3 spoons laying on a laptop keyboard in a black and white photo. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper reads “MediPort Surgery and Entyvio” with a picture of a small purple Bard PowerPort in the lower right hand corner of the paper.]

I woke up bright and early Friday after a late night with friends watching Critical Role (A livestream D&D game with voice actors). I knew I had to be up early but I also knew that I would be asleep for a good portion of Friday seeing as it was the day of my MediPort surgery.

A while back upon my Crohn’s flaring back up my doctors decided they wanted to start me on Entyvio but after having difficulty with my veins recently I was not thrilled about the idea of having to get infusions that required an IV every 4 weeks. To avoid becoming a human pin cushion for IV attempts, my doctor agreed that a Port would be a good idea. Admittedly, I wasn’t nervous until the day of. My mom mentioned that they might just do like a twilight sedation with local numbing because they said I could have feedings/drinks until 9am. Knowing full well that local numbing doesn’t work on me, the whole idea freaked me out a bit.

We got there at 12:30, even though the surgery wasn’t scheduled til 2:15 because of all the stuff they have to get out of the way before surgery. Weigh ins, meeting with the nurses, anesthesiologist, doctors, surgeons, answering a billion and one questions, the works.  Luckily one of the nurses was super reassuring about the fact that they would knock me out completely because since they are cutting into a major vein they can’t really let children stay awake since it could traumatize them.

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[Image shows me laying on the pre op bed in the hospital gown given to me, I’ve got short red hair, no makeup on, NJ tube, and arms extended for the selfie.]

The team was all super nice and reassuring. And as they carted me off to the OR I was feeling much more relaxed about the situation, till we got in there. They told me they wanted to start an IV so they could administer medicine for my nerves as well as to put me under, and that they would give me nitrogen gas (laughing gas) to calm me while they tried to find an IV. Unbeknownst to them, laughing gas doesn’t calm me when I’m anxious, only makes it harder to communicate my panic. As they started feeling around, I began to hyperventilate.

They started asking me questions about my tattoos to try to relax me, which I tried to answer to the best of my ability. But soon the room started getting dark. I remember them asking me a question about my crystal tattoo, and I was unable to respond. The room kept getting dark and I heard, “Grace? Grace? Grace?” Almost like an echo. At the moment all I could think was “That’s not even a real word. And it’s gonna be the last words I hear.” I was slightly determined at that point that I was dying. The room went completely dark and then bright white. It felt like an eternity but was probably just a few seconds. I just remember thinking, “This isn’t so bad. It will all be over soon at least. Nothing I can do about it.” I was a lot more accepting of the idea of death than I thought I would be.

Alas, I was not dead, just lack of oxygen because I woke up with an oxygen mask on to replace their nitrogen gas. They asked me if I was okay, let me know they had started my IV finally and the last image I remember was seeing the tiny syringe filled with their knock out medication. And with that, I was out.

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[Image shows me laying in a hospital bed hooked up with my port. I have a purple flower crown on and in a hospital gown with my hand resting on my shoulder.]

I did not wake up like this, in fact, I woke up a bit of a mess. I very seldom have a good reaction waking up to anesthetics. Not to mention I was right about how local numbing did not work because I woke up feeling like I had been cut open, which I had. They gave me Fentanyl and Dilaudid which was enough to ease the pain and calm me while we got back to my room. They did an x-ray to make sure it was in the right area. They pulled labs, which drew super easily, flushed it, etc. It worked great.

[Image 1 shows me holding a small grey bracelet with a bunch of papers in the background. The bracelet is rubber and reads “Bard Power Port”. Image 2 shows a card with some papers, the card asks for the Patient’s Name where I sloppily wrote Grace Shockey, asks for the doctor’s phone, the implant site/implant date, notes, whether or not it is a single septum or duel septa. And then a bunch of small words and details about the “Bard PowerPort” along with a pamphlet on the power port as well.]

They gave me a bunch of stuff about how it’s important to let doctors and nurses know in ERs about the port, hence a card and bracelet. It was like the all access pass package. I was still a bit out of it when I tried to fill out the card with a massive sharpie.

Once I was settled in they gave me a Solu-Medrol injection through the port and started my Entyvio infusion. It was a short infusion of only 3o minutes, nothing in comparison to the 8 hours I had to sit for Remicade because of the reaction I had to it. With all the medicines wearing off though that evening I became a bit of an emotional mess, not to mention a familiar tightness in my chest that I had felt before with Remicade. The nurse I had that night didn’t seem to understand when I tried to express my concern, which only overwhelmed me more since verbal communication is not always my forte.

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[Image shows my neck to lower chest where they taped up my chest with lots of steri strips around the port. I’m still in the hospital gown.]

The first night was emotionally rough but thanks to netflix and How I Met Your Mother, the night got better. Day two was very boring. They got me stuff to clean up and wash my hair since they didn’t want me to shower while the port was accessed. Afterwards I went on a little bit of a walk with my mom to stretch because I was getting sore from just laying in bed. Ran into the GI Fellow who was on my case for the weekend, who decided physical therapy would be good for me. So he said he would work on putting that in motion for me.

The rest of the day was spent hooked up to their feeding pump, getting more IV steroids, and watching the Food Network Chanel while crocheting with my mom. The nurse I had was super nice as well as the Child Life Specialist. They got me a new gown to change into that was a bit less revealing than the one given to me for the OR.

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[image of me in the new gown after cleaning up and getting to wash up. I’ve still got my purple flower crown on, and my black and green glasses, NJ tube, my hand is up fiddling with my feeding tube, I’ve got my fitbit and hospital bracelets on and there’s monitors and stuff behind me. ]

Day three started with Child Life Specialist coming over and asking me what I knew about ports, to which I knew very little. So she left and returned with a puppet, who’s name escapes me. But this puppet was a thing of nightmares. Honestly, it’s face was more terrifying than any needle.

    [image 1 has a photo of an orange puppet with buggy eyes, yellow mullet like hair, an an odd open mouth, in a white dress with multicoloured hearts. Image two shoes the puppet with the top part of the dress pulled up as the child life specialist showed me how they access the port.]

She walked me through the steps of accessing and deaccessing the port and how they clean the skin, sterilize everything, and so forth. And she even gave me a book with another puppet in it, that one was blue and named Max. It was pretty easily explained and used simple terms for children to better understand. It made things really simple for me to understand. I was pretty grateful for once to have things simply explained instead of medical term after medical term and using google to understand what doctors say.

That night was filled with more food network and a super nice nurse who I had previously had from my ostomy surgery. It was a pretty boring night filled with crocheting and the new season of Cutthroat Kitchen.

Today we got the ball rolling to go home, they gave me my last dose of Solu-medrol and got the orders to deaccess my port. Which was essentially like a chest wax. The removing of the needle itself didn’t really hurt, just felt awkward. The tape was the worst part since it stuck to the steri strips of my incision.

They gave me a strip to cover the incision while it was still a bit bloody and so it wouldn’t stick to the shirt I was wearing.

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[Image shows me pulling down my shirt a little to show the deaccessed port, you can see the bloody steri strips but that’s about it. I’ve got on my black and green glasses, a bright blue shirt, and an awkward expression.]

Once I was deaccessed, they told me that the gauge of my needle was a 20g and 1 inch needle which was important to know for accessing in the future so that the didn’t have to stick me more times to access the port. And with that, we got our discharge papers and we were headed home.

The four hour ride home wasn’t too bad, had to adjust my seat belt to not irritate my chest. I was super glad to get home though and be able to bathe and really wash my hair, because their shower cap of dry shampoo made my hair feel really funny so I was glad to get that feel out of my hair. And now I can relax and let it heal a bit before my next infusion this Friday! It will be my first time getting accessed while awake so that should be interesting. Especially since my port is hardly visible since my vein is pretty deep . But it is all a learning experience and overall makes things a lot easier!

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[image of me in the car, got my flower crown on still, black and green glasses, NJ tube, I’m wearing a blue tshirt with the “Cincinnati Children’s” Hospital name and logo and a purple sticker that says “Cincinnati Children’s INPATIENT]

 

 

World IBD Day

World IBD Day

[Image shows a collage of various people, friends of mine, wearing purple and in the center reads “#WorldIBDday World IBD Day Crohnsandcolitis.org.uk 19.May.2016” ]

“As most of you know I was diagnosed with Crohns when I was 9 years old and I would not be the person I am without my illness. That being said, this same illness wrecks the lives of hundreds of thousands of people between harsh medication, surgeries, medical bills, feelings of isolation, and of course the actual symptoms of the illness. But it can also bring people closer together, make friendships, and start a change. I am Grace, I’m 18 (almost 19, I have an ileostomy, and I have Crohn’s disease. The disease may be invisible but I am not and I’m here to raise awareness. You can too by wearing purple for World IBD Day!” I posted on my social media on May 19, 2016 for World IBD Day. A day to recognize Crohn’s disease world wide and show that while the disease may be invisible the people who survive through it are not.

As part of World IBD Day friends of mine dressed in purple to show their support and spread awareness for IBD. I couldn’t have been happier with the results considering I had to actually to narrow down who all I could fit on the collage when it came down to it! I want to thank each and everyone of them who took the time to help me spread awareness of this disease whether you threw on a t-shirt, posed with a board with fact, or one of my friends even went through the entire process of putting her purple kimono for me. Each and everyone of you are amazing for helping me.

So for World IBD Day I am going to share some facts about Crohn’s Disease and Ulcerative Colitis from CCFA:

  1. Crohn’s Disease can affect anywhere from mouth to anus.
  2. Ulcerative Colitis only affects the colon
  3. Crohn’s and Ulcerative Colitis are not the same thing.
  4. Approximately 1.6 million Americans currently have IBD, a growth of about 200,000 since the last time CCFA reported this figure (in 2011).
  5. There may be as many as 80,000 children in the United States with IBD.
  6. These chronic, life-long conditions can be treated but not cured. IBD can significantly affect a patient’s quality of life.
  7. Crohn’s disease and ulcerative colitis are inflammatory bowel diseases that cause chronic inflammation and damage in the gastrointestinal (GI) tract.

Some of the symptoms of these diseases are:

  • Diarrhea
  •  Abdominal pain
  • Rectal bleeding
  •  Urgent need to move bowels
  • Sensation of incomplete evacuation
  •  Fever
  • Loss of appetite
  • Weight loss
  • Fatigue
  • Night sweats
  • Loss of normal menstrual cycle
  • Joint pain
  • Eye pain

Some of the Complications of IBD include:

  • Heavy, persistent diarrhea, rectal bleeding, and pain
  • Perforated bowel—chronic inflammation of the intestine may weaken the intestinal wall to such an extent that a hole develops
  • Toxic megacolon—severe inflammation that leads to rapid enlargement of the colon
  • Fistula—ulcers on the wall of the intestine that extend and cause a tunnel (fistula) to another part of the intestine, the skin or another organ.
  • Stricture—a narrowing of a section of intestine caused by scarring, which can lead to an intestinal blockage
  • Abscess—a collection of pus, which can develop in the abdomen, pelvis, or around the anal area
  • Perforated bowel—chronic inflammation of the intestine may weaken the wall to such an extent that a hole develops
  • Malabsorption and malnutrition
  • Eyes (redness, pain, and itchiness)
  • Mouth (sores)
  • Joints (swelling and pain)
  • Skin (tender bumps, painful ulcerations, and other sores/rashes)
  • Bones (osteoporosis)
  • Kidney (stones)
  • Liver (primary sclerosing cholangitis, hepatitis, and cirrhosis)—occurs rarely

                   For More IBD Fact Click Here

And remember, while IBD may be invisible we are not!

IBDDay

[Image shows me sitting on my front porch from the chest up. I’m wearing a purple flowercrown in my short red hair, I have my black and green glasses on, NJ tube, and makeup. I’m wearing a purple shirt with a light purple heart and a dark purple ribbon on it for Crohn’s Disease.]

 

3 Helpful Apps for Mental Health

Blog post

[Image shows 3 spoons laying on a laptop keyboard with a clipart of torn notebook paper with a red paperclip overlaying. On the paper reads “3 Helpful apps for Mental Health” with a ITunes App Store Logo in purple. At the bottom of the banner is the url for Thee Crohnie Grace Blog]

Here lately I have been struggling to keep up with my therapy journaling and have been having more meltdowns, I was able to find 2 Apps though that cover the same things I have been learning in my behavioral therapy and 1 App to help during meltdowns. So I figured I would share what they are and what they do. The names of the apps are: Moods, What’s Up, and EmergencyChat. All of them are free!

apps

[Image shows an IPhone screen with three apps. One is a white block with 3 dots: blue, yellow, and pink that reads “Moods” below, the second App is a pink block with a black hand with a smaller hand holding it, and it reads “What’s Up” below it, and then a black box with a green circle and white chat circles that reads “Emergency…” for EmergencyChat]

In my therapy we have been talking about the importance in identifying emotions and how they can help you better identify and verbalize your concerns. Especially since with my sensory overloads, I have a hard time identifying what I am feeling until I am overwhelmed and unable to verbalize those emotions. “Moods” helps you find the words to fit your emotions.

Upon clicking on the app you will be met with a screen that asks “How Do You Feel?” with three options: good in green, okay in orange, and bad in red.

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[Image shows a white screen that reads “How Do You Feel?” With three colored sections. One is green and reads “good”, one is orange and reads “okay”, and one is red and reads “bad”]

When you click one of the three options it opens up even more words!

  • Good: Happy, Effective, High, Social, Elated, Energetic, Playful, Lively, Optimistic, Playful, Lively, Optimistic, Active, Walking on Air, Alert, Excited, Contented, Serene, Relaxed, Calm, Love, Untroubled, Rested, Focused, Cheerful, Safe, Fearless, Peaceful.
  • Okay: Steady, Indifferent, Calm, Even, Relaxed, Neutral, Balanced, Careless, Focused, Middle-of-Road
  • Bad: Pissed, Upset, Sad, Out-of-control, Unsafe, Depressed, Bloated, Lethargic, Risky, Angry, Furious, Skeptical, Doubtful, Tired, Tense, Nervous, Stressed, Bored, Fatigued, Worried, Pressured, Sleepless, Distracted, Irritable, Fearful, Panicked

It even offers some Emoji’s for if you are struggling to find words to cover how you feel which is extremely useful for neurodivergent people like me who know how they feel but can’t always find the right words, as well as you can include your own options.

Once you have selected all of your emotions you click “Continue” and it logs your mood onto a calendar. From there it gives you the option to “Add A Note” or click  “No, I’m Done”. It can be helpful to write what happened before you started feeling that way, so that once you are able to go back through you may be able to identify what exactly led to those feelings. Then you can view your moods and try to track how you have been feeling.

Of course once you identify how you are feeling, it can be helpful to find exercises to help, coping strategies, information, and even some more personal things like journaling your feelings and habits (both positive and negative). And one App can do all that and more: “What’s Up?”

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[Image shows a screen that reads at the top “What’s Up? Let’s Cheer You Up a Little” with four sections. The first shows hands holding and reads “Help Right Now: Everything you need to keep calm right here”, The second shows a profile face with 3 gears and reads “Coping Strategies: Thinking Patterns, Metaphors, Manage Worries & Positive Steps”, The third shows an open book with letters and numbers rising from it and reads “Information: Anger, Anxiety, Depression, Self Esteem & Stress”, and the last one shows a stick figure sitting by a sprouting plant and reads “Personal: My Diary, Positive Habits, Negative Habits, My Notes”]

Starting at the beginning you can click on “Help Right Now” and it comes up with four more options: “Stop!: Right now, just take a minute to calm down”, “Get Grounded: A fun, simple game to keep you grounded”, “Breathing Control: 3 simple breathing techniques to help you calm down” and “Catastrophe Scale: Put your problems into perspective easily”. 

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[Image shows an IPhone Screen Snapshot that is an App that reads at the top “Help Right Now It’s Okay, You’re Safe Here” and then a hand in the stop position that reads “Stop! Right now, just take a minute to calm down. The second is a shovel digging into a pile of dirt that reads “Get Grounded: A fun, simple game to keep you grounded”. The third option is a set of lungs that reads “Breathing Control: 3 Simple Breathing Techniques to help you calm down”, and then the final one is a gauge with the pointer sticking straight up that reads “Catastrophe Scale: Put your problems into perspective easily.]

“Stop!” starts with a breathing exercise that I have been working on in therapy which includes breathing in intervals of four, then you swipe and it tells you to observe your thoughts and feelings and gives examples, then tells you to pull back and ask yourself questions to help put things in perspective, then tells you to try something that works best for you or to try the other options.

“Get Grounded” will ask you to name 5 things of a random category like “Elements”, “Gems”, “Ingredients in a Good Burger”, “Extinct Animals”, etc. And will then have 5 stars on the bottom of the silhouette image matching the category. As you think of things that fit into that category, you can click on the stars and they will spin and get slightly bigger. It will ask you to do this 5 more times. And then if you need to keep going it will let you keep going until you feel better.

“Breathing Control” offers three different breathing techniques: Belly Breathing, 4-7-8 Breathing, and Roll Breathing. It will walk you through each step of the breathing exercise.

“Catastrophe Scale” just allows you to rate your troubles from 0 being “Everything in life is perfect” to 10 being “Everything has fallen apart and it feels like it’s all your fault”. It is a good visual representation to help put things in perspective that sometimes while you might be upset, you have been through worse and you can make it through this 4 or 5.

If you would like some coping strategies then just return to the main menu and click on the section that says “Coping Strategies”. It will bring you to a section of various coping mechanisms to fit different strategies that work for different people.

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[Image shows a IPhone Screenshot of an App that reads “Coping Strategies: Cope with thoughts and feelings”. It then has 4 sections. The first section shows three puzzle pieces interlocking that reads “Thinking Patterns: Identify unhelpful thinking patterns, and challenge them”. The second section shows a chat bubble that reads “Metaphors: Helpful ways to better understand your thoughts”. The third section shows a circle smiley with a unsure squiggle smile that reads “Manage Worries: 10 simple ways to help manage your worries. The fourth section has two shoe prints that reads “Positive Steps: Simple steps you can take to start feeling better”]

The first option, “Thinking Patterns”, brings up 12 different thinking patterns:

  1. Mind Reading: Assuming we know what others are thinking (usually about us)
  2. Mental Filter: When we notice only what our “filter” allows us to notice and we dismiss anything that doesn’t “fit”.
  3. Prediction: Believing we know what’s going to happen in the future and treating it as a certainty.
  4. Compare & Despair: Seeing only the good and positive aspects in others and comparing ourselves negatively against them.
  5. Shoulds & Musts: Thinking or saying “I should (or shouldn’t” and “I must”, therefore putting pressure on ourselves and setting up unrealistic expectations.
  6. Critical Self: Putting yourself down, being too critical on yourself, or blaming yourself for events or situations that are not totally your responsibility.
  7. Black & White Thinking: Believing that something or someone can only be good or bad, right or wrong, rather than anything in-between or “shades of grey”.
  8. Catastrophizing: Imagining and believing that the worst possible thing will happen in a situation, when realistically things would turn out much better.
  9. Emotional Reasoning: I feel bad, so it must be bad! I feel anxious, so I must be in danger.
  10. Mountains & Molehills: Exaggerating the risk of danger, or the negatives, and minimizing the odds of how things are most likely to turn out, or minimizing the positives.
  11. Evaluations & Judgments: Making judgments about ourselves, others, or things that happen when we have no evidence to back up those ideas.
  12. Bad Memories: Sometimes events trigger memories of being hurt in the past, leading us to believe that the danger is here and now, rather than in the past, causing us to feel down, upset, stressed, or worried right now.

With each of these, it will also include an “Ask Yourself” or “Remember” with tips or questions to help put things in perspective and break that thinking pattern.

In “Metaphors” you will see 10 different metaphors, I will not repeat those all because metaphors confuse me, and also I do not wish to spoil all the details of the app. The names of some of the metaphors though are: “Passenger on Bus”, “The Mountain”, “The Ball”, etc.

The next section is “Manage Worries” which has 10 different mechanisms for coping with worries and fears. Such as repeating your worry until you’re bored silly, breathe it out, and recognizing false alarms and many more.

The last section in coping strategies includes “Positive Steps”. The 12 positive steps given are:

  1. Be kind to yourself
  2. Exercise regularly (If you can)
  3. Take up a hobby and/or learn a new skill
  4. Have some fun and/or be creative
  5. Help others
  6. Relax
  7. Eat healthy
  8. Balance sleep
  9. Connect with others
  10. Beware of drinks and drugs
  11. See the bigger picture
  12. Accepting “it is how it is”

They each go into a lot more detail, some offer questions, advice, and examples.

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[Image shows an IPhone screenshot of an app that reads “Information: Learn more about the below subjects”. Then there are four sections. The first section shows an upset stick figure in a suit that reads “Anger: Learn how to better manage anger”. The second box pictures a stick figure with a scribble next to his head that reads “Anxiety: Understand and cope with anxiety”. The third box shows a stick figure sitting at a desk with a stack of papers and his head resting on the desk in a defeated manner that reads “Depression: Learn methods to cop with depression”, the last section pictured on the image is a photo of a face with shoulder length hair and a blank expression that reads “Self Esteem: Build your self esteem and self value.]

Besides Anger, Anxiety, Depression and Self Esteem, there is also Stress when you scroll down farther.

When you click on Anger, Anxiety, or Depression it will give you a bunch of different information on thoughts, physical sensations, behaviors, identifying your triggers, what to do when you feel angry, and dealing with the physical sensations.

When you click on Self Esteem it will give you the effects of low self esteem, tips on doing things differently, and thinking differently.

And when you click on Stress it will come up with things similar to Anger, Anxiety, and Depression: thoughts, feelings, physical sensations, behavior, identifying your triggers, and then doing things differently and thinking differently.

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[Image shows IPhone Screenshot of an App that reads “Personal: Keep Track of What’s Going On” with four sections. The first section shows a journal and reads “My Diary: Good Days or Bad, keep track of how you feel”. The second shows a plant growing that reads “Positive Habits: Keep track of your positive habits”. The third section shows a withered up plant that reads “Negative Habits: Try and break those negative habits”. And the final section shows a clipboard with a list that reads “My Notes: Keep your ideas or suggestions organized here”.]

The next section is “Personal”, which covers a diary that you can write entries in, keeping track of positive habits and setting goals to reach new positive habits, negative habits and setting goals to break those negative habits, and notes where you can write little notes to yourself on good days to remind you of the good days.

Overall this app has a little bit of everything for everyone and is incredibly helpful. It is free, but you can make donations or buy themes to help the app developer.

The last app I want to mention is extremely helpful for those who experience sensory overloads, have sensory processing disorder, autism, or have issues with going nonverbal or not being able to communicate verbally. This app is the EmergencyChat App!

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When you click on the app it will immediately pop up with this screen that reads “Meltdown: I gave you my phone because I can’t use or process speech right now, but I am still capable of text communication. My hearing and tactile senses are extremely sensitive in this state, so please refrain from touching me. Please keep calm and proceed to the next screen that has a simple chat client through which we can communicate.” and then the green option to “Continue”.

The message can be customizable, as well as the font size can be changed to be more accessible. From there you can go back and forth with just one phone typing messages back and forth until you can verbalize again.

Overall, these three apps are fantastic at applying skills taught in therapy and all available at your finger tips for free. Within just this week I have found them to be extremely helpful for identifying feelings, easy and efficient journalling, and dealing with nonverbal communication during and after meltdowns.

   Hopefully they will be able to help you guys out as well! 

 

 

 

 

Cripple Punk: The Movement for the Physically Disabled

Blog post

[Image shows three spoons laying on a laptop keyboard. Overlaid is a clip art of torn notebook paper with a red paper clip. On the paper reads “Cripple Punk: The Movement for the Physically Disabled” with a red disabled stickman symbol to the bottom left. And the bottom of the banner is the URL to Thee Crohnie Grace Blog]

The movement for physically disabled people, by physically disabled people.

“It’s about rejecting pity, inspiration porn, & all other forms of ableism. It ejects the “good cripple” mythos. Cripple Punk is here for the bitter cripple, the uninspirational cripple, the smoking cripple, the drinking cripple, the addict cripple, the cripple who hasn’t “tried everything”. Cripple Punk fights internalized ableism & fully supports those struggling with it. It respects intersections of race, culture, gender, sexual/romantic orientation, size, intersex status, mental illness/neuroatypical status, survivor status, etc. Cripple Punk does not pander to the able bodied.”

In simple words, a movement to remind abled people that disabled people do not exist for their inspiration, we do not have to be positive 24/7, we are people just like everyone else.

It started as a reclaiming of the once used slur towards physically disabled people. Now has an assortment of rules and thousands of people joining in via posting selfies of their unapologetically crippled selves.

Some of the rules that started the Cripple Punk (CPunk for those uncomfortable using the Cripple term) Movement are:

  • Cripple punk is not conditional on things like mobility aids & “functioning levels”
  • Always listen to those w/ different physical disabilities & different intersections than yourself. do not speak over them
  • Disabled people do not need to personally identify w/ the words “cripple” or “punk” individually to be a part of cripple punk
  • Able bodied people wishing to spread the message may only ever amplify the voices of the disabled
  • Able bodied people may never use uncensored slurs themselves but never censor our language
  • Able bodied people must always tag things like reblogs with “i’m able bodied”
  • Physically disabled people wanting to be a part of the movement who are uncomfortable using the slur may refer to it as “cpunk”

When you google “Cripple Punk” you will often be met with lots of selfies of those who are wheelchair users, cane users, walker users, and more. It has become a movement for body positivity and support for each other. It combats stigmas often put in place about people with disabilities by those without disabilities.

People do not realize some of the things people with disabilities put up with, especially younger women. From constantly being told to smile, think positively, try yoga, etc. to constantly getting dirty looks for being young with a cane or using a wheelchair, or not getting up from a wait area seating when the seats are full for someone older. This movement is for those.

[Image 1 shows me in a burgundy sweatshirt and black shorts with red hair and makeup and my NJ feeding tube sitting in a relaxed position in a wheelchair. Image2 shows me sitting upright with my hands on the wheels of the chair.]

It allows us to decide how we are seen, rather then allowing the media to control how we are viewed. It allows people to be unapologetically disabled, which may not seem like a huge deal until you have experienced the prejudice that comes with being disabled.

 

Passport Problems: Tubie Struggle

Blog post

[Image shows three spoons laying on a laptop keyboard while a clipart of torn notebook paper with a red paperclip overlays. On the paper reads in black text “Passport Problems: Tubie Struggle” with a postal image of an eagle and lines in the upper right of the paper. At the bottom of the banner is the url for Thee Crohnie Grace Blog]

A vacation is anything but when you have to deal with all the pre-vacation issues. Scheduling the trip, getting your passport, packing, making sure you do not forget anything you will need. It is hard enough with limited energy whilst also trying to schedule doctors appointments, surgeries, and the next college semester.

After we got the passport photos done and sent in, I really thought that was it and that in a week or two we would have our passports and all I would have to do is make sure to pack all my medicine and medical equipment to survive for a week on a boat.

So you can imagine my annoyance when I check my email and find an email from the United States regarding my passport saying that I have to resubmit a photo because: “The photograph you submitted cannot be used because bandages or medical equipment which obscure the face may not be worn in a passport photograph.”

Of course down at the bottom they state if it is medically necessary that I can have my doctor email me a letter or the medical orders, but I cannot just email them back. They only accept snail mail, so I have to pay to send them a letter back from my doctor that says “Oh yeah, this isn’t some edgy fashion statement. She sort of needs that tube for medical reasons.”

You would think this would be pretty common knowledge that people do not just shove tubes down their nose for fun. Not to mention in comparison people wear glasses all the time and it obstructs their face far more than my tube which I use clear tape so it’s not like there’s a large white bandage on my face. Alas, the government apparently does not know this. Regardless, this is a hassle, the least they could do is pay for the postage.

Someone suggested I could photoshop my tube out of the photo, but I don’t feel like I should have to look like an abled bodied person to get my passport. Disabled people are silenced all the time as it is, so I am not gonna be like “Oh I’m sorry there’s a tube on my face. Let me just hide my disabilities for you.” I am unapologetically sick. This just proving more and more that the world is not an accessible place for people with disabilities. Hurdles are thrown up in our already complicated paths.

So while today’s blog post WAS going to be about the Cripple Punk Movement, today you were graced by a lovely bitter rant about the struggles of being a tubie in even the most boring things. So tomorrow I will be talking about the Cripple Punk Movement: A movement that is exclusively by the physically disabled for the physically disabled.

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[image shows me resting my chin on my hand with a raised eyebrow in an annoyed/questioning expression in a burgundy sweatshirt with my NJ tube on my face and glasses pushing my hair up out of my face.]

 

Stay Tuned!