Cardiology and Psychiatry: A Fun Week

 

Blog post[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the top of the paper is a clip art of a pink anatomically correct heart and a brain in various colors. In black text reads “Cardiology and Psychiatry: A Fun Week!”. At the bottom in red text is the url for Thee Crohnie Grace]

On top of my exceedingly busy college schedule, every week seems to add a dash of something else by including a few doctor appointment’s.

This week’s dose of doctor’s appointments included a Cardiology appointment on Wednesday to follow up with my orthostatic pressure and tachycardia issues, and a Psychiatric appointment on Friday to follow up on various things from my behavioral therapy sessions.

Wednesday is the busiest of my college days, It’s almost back to back with Math, Art, and then Bio. From 11am-6pm. I ended up having to leave Art after a half hour to get to my appointment which I thought was at 1:30pm. Upon driving across town to the main hospital where I was told he would be, we discovered he was at their sub-unit today on the other side of town, and that my appointment wasn’t until 2:40pm.

So we drove to my apartment to pick up my stuff for Biology to kill time before heading out to my cardiologist appointment.

Upon getting up to Cardiology, the nurse came in and checked my HR and BP and informed me what I already knew: my BP was low, my HR was high. She said Dr. Ahmed would be in to see me soon and talk about my heart monitor results.

I always get anxious meeting new doctors, I’m afraid they won’t take me seriously, and will write my problems off because of my collection of illnesses. So when Dr. Ahmed came in and I saw he was an older man, I grew more nervous, which doesn’t help my heart rate much. He tested my BP laying versus standing, noticed the drop, then tested my HR laying versus standing and noticed the huge rise. My HR while laying was 98, and while standing went to 182. He commented that he was surprised I hadn’t passed out more often and noted that my heart monitor showed much of the same things, that my heart would spike incredibly when I stood up.

I told him that my primary mentioned POTS and said it had to do with my orthostatic pressure and had mentioned a tilt table test. He said he was going to put me on a low dose beta blocker (Cardevilol) and in a month see me again, if the beta blocker didn’t work he would send me to an Electrophysiologist who would do a tilt table test, and decided if more needed to be done such as a heart ablation or putting in a pace maker, but something needed to be done because he said the strain on my heart was far too great and he worried that if we didn’t get it down.

So with that I went to go pick up my prescription and read up on my new medication. I was a little concerned due to the fact that my blood pressure was already low and beta blockers lower your blood pressure even more. So my grandma became a little worried about that.

Next was my psychiatry trip on Friday, also with a new doctor. I had been seeing a nice lady for my behavioral therapy since February, we had made a lot of progress but there was still a frustrating problem that nothing was helping with: my meltdowns.  So after talking to my therapist for some time she decided it would be best to send me to psychiatry to try some new medication since lots of medication in the past has not been helpful.

I got there and had to do the mandatory drug test and what not, and of course it all came back negative. So then they checked my blood pressure and weight and sent me to the waiting room again before my new doctor came to see me. He was younger, and short, just a little taller than I am, and with just a slight accent.

We went back to his office and I tried to determine the best seat. The thing that freaks me out about psychiatry is I’m afraid they try to interpret every action I make, I know they don’t, not really, but it leads me to overthinking everything I say and do.

I sat down next to the book case so I could look at labels, because if I make eye contact with doctors I get intimated and overwhelmed and will likely cry. So I sat down and began to read the titles of all the psychology books. He started asking my questions about my relationships, family and intimate ones, asked about my home life, to describe my meltdowns, and then asked me why I was here.

I told him that to be honest, I didn’t have a lot of issues. I wasn’t super anxious,  I wasn’t depressed, I just needed something to help with the meltdowns. So he started asking me about my habits and roommates, and about my latest meltdown after I had been getting onto my roommates about their lack of help cleaning, the constant messes, and them just leaving their stuff where it doesn’t belong. One of my roommates confronted me by yelling at me and the other roommate had been causing problems behind the scenes by not talking to me and just to his boyfriend about me. It led to a massive meltdown as he confronted me and wouldn’t stop yelling at me despite my boyfriend and friend telling him to stop.

After this he started asking me more questions about my personality, if I was perfectionist, asked me about my grades, about my study habits, about how particular I was or if I had a habit of checking things or washing my hands too much, standard “OCD” type questions. When I informed him I did some of those things but I had logical reasons for them, they weren’t a problem. I washed my hands a lot because I don’t like when I touch wet or sticky things, or at the college because there’s a lot of germs and I have a low immune system. I checked the stove and locks a lot because I had a poor memory and didn’t want to leave anything unlocked by accident or leave the stove on and burn the place down.

Yes, some of my mannerisms weren’t considered normal but they were able to be explained. He asked how my friends and roommates felt about my habits. I said they felt I was controlling, and that I can become a “demon” when I start to clean and people try to interfere, that I could be a bit of a hoarder with things not like trash per say but I had a lot of stuffed animals that had no sentimental value but I couldn’t part with when I moved.

He asked me if I had heard of OCD, I said yes it’s obsessive compulsive disorder. I insisted I didn’t have OCD because it wasn’t a huge problem, minus the way some perceived it.

That’s when he said I had an obsessive compulsive personality which is also a disorder that typically the person with OCPD or Anankastic Personality Disorder, don’t see as a problem.

It’s characterized by a “general pattern of concern with orderliness, perfectionism, excessive attention to detail, mental and interpersonal control, and a need to control one’s environment at the expense of flexibility, openness to experience, and efficiency.”  (Wiki)

He prescribed a high dose of Celexa and Klonopin for my meltdowns and said he wanted to see me in 6 weeks to see if anything changes.

And with that I was off, and began to do more research on the medicines and also the personality. At first I didn’t realize that it was a disorder until I read more into it and realized just how controlling I can be at times and how my desire to be organized sometimes gets in the way of my productivity.  Like my desire to underline and high light all important key points in my school notebooks, but also feeling all things said are equally important so I find myself high lighting everything and focusing more on the order and less on the learning of the material, which was mentioned to me one day in Bio but I paid no attention to.

“Do you ever find yourself focusing so much on organizing that you find yourself not studying the material?” The lady next to me asked a week ago, I rubbed it off and said no, cause I didn’t see anything wrong with highlighting everything and color coordinating all my materials, even if I wasn’t finishing in proper time and not retaining the material cause of the focusing on highlighting and not what was being highlighted.

It’s funny how something I had never heard of clicks so quickly to who I am.

So I went to go fill my prescriptions and go home. Only to get a call that my insurance wasn’t going to cover my hospital entyvio infusions and that I would have to do home infusions and that we owed $50,000  for the last infusion covered. Then went to go pick up my medicine to find the insurance would only cover my liquid Celexa and it would be $62 with coupons for my Klonopin dissolvable tablets. So I guess it will boil down to Grace vs The Insurance Company. Ding Ding. Stay Tuned for next time to see what happens with the insurance.

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When it All Becomes Too Much

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[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “When it All Becomes Too Much” and below that is a floral circle with a pink circle featuring white cursive text that reads “don’t lose hope”. At the bottom of the banner is the URL for Thee Crohnie Grace Blog]

There are some weeks when the negatives keep piling up faster than the positives can combat them. That has been the last week and a half for me. Doctors are playing phone tag, Nurses can’t seem to figure out how to access a simple port, still no nutrition or NJ tube, my primary forgot to fax lab orders to the infusion clinic, turns out the lab itself can’t draw labs from a port, so I got stuck a couple times, and on top of all the normal things that come with having various chronic illnesses… I broke a nail.

It just keeps knocking me down. The second I start to gain a little positivity, something else just knocks me back down a peg. Since having to pull my NJ tube last Monday, it’s just been a steady slope. And to be quite frank, I’m getting fed up with it, I am so tired. It’s a vicious cycle with chronic illnesses of trying to stay afloat in rough waters. No matter how many waves keep pushing you down, drowning isn’t a choice. And sometimes you will gain the upper hand, find the light and the good in all of this crap. But there are weeks, where the good seems fleeting and it’s hard to stay afloat. It would seem much easier to just give up and drown.

But I can’t lose hope.

All last week was a constant battle with my doctors. For some reason the radiologist who typically would replace my feeding tube, is not in his office for the week. So they told me the only way I could get it replaced (maybe) was by going to the ER and waiting there, getting accessed, getting labs I don’t really need, and waiting for who knows how long when they may not be able to do anything about it.

I hate the ER. I hate it more than I hate anything else. The entire environment feels judging. And after being there so many times this year, they know my face and name. Only upping the judging factor. So there was no way I was going there. Of course now that it’s been a week or so and I’m feeling the effects of no nutrition, I’m contemplating just going and getting it over with. But I basically told the doctors that it was their problem, not mine. And I wasn’t going. I was fed up.

Then comes my 3rd Entyvio infusion on Friday. The nurse couldn’t find my port, cause it’s deeper than most. (Let the record show, she is the only nurse to ever have an issue finding it.) And so when she stuck, she missed my port. She tried to push saline anyway and it burnt. I panicked and told her to stop and remove it. Rather than listening to me, she used her free hand to hold me down and told me to stop moving. And continued to dig around my chest til she could get the needle in the port well enough to draw back blood and push saline. Which still hurt from it barely being in the port.

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[Image shows me with short red hair, green glasses, puffy red face from crying. I’m wearing a white tank top with black designs and a black and white cardigan. I have a Star Wars lanyard on and white dressing and IV line tubing coming from my chest from being accessed.]

I was basically nonverbal the rest of the infusion, relying on my phone for communication and also using my grounding app to try to calm down enough to speak. A nice lady with purple hair came over when she heard me crying and upset and gave me a purple bracelet. It had little stick figures in dresses made out of purple awareness ribbons and said “We’re In This Together”. It put things in prospective for me, and gave me the push I needed to calm down despite the nurse making a rude comment about how I was on my phone the entire time, and then trying to hug me afterwards. I do not like being touched when I’m upset, so this only upset me more.

Once I got home, I was greeted by my puppy, and spent time on the porch with her while calming down.

[Image 1 on the left shows me on the porch with a forced smile and my yorkie on my lap. Image 2 on the right shows a corner of my garden where some of my flowers were starting to bloom, they are purple and on a long stalk.]

The same stuff has continued, they forgot to send my labs to the clinic so my Doctor called and said I could go on Tuesday (today). Still no word on an NJ tube. I have been trying to eat little things here and there but most of it still comes up. And it’s incredibly frustrating because my grandma still tries to get me to eat. And even when I say no because I’m not hungry or nauseated, she pushes it. I get she is worried but it drives me insane.

To be honest, almost everyone and everything is driving me insane this week. I can’t think of many people who haven’t made me want to bang my head off of a wall. I’m just overwhelmed to the brim with so much and people keep piling on. And it may not even be something they mean to. I just am frustrated and bitter. I’m tired.

I’m fighting a losing fight it seems. Where I wrinkle my nose in efforts to push back tears every couple of minutes. I’m just at my wits end with it all. I want so badly to throw in the towel and say “Screw this. Screw all of this. I am so done.” I’ve fought long enough, right? It’s good enough? Can’t I just get a single goddamn break?

But I think of the woman at the clinic, and look down at the bracelet she gave me and remember I’m not the only one fighting. I’m not alone. And that’s worth fighting for. Even if I’m not fighting this fight for me, I’m fighting it for someone. I think to myself there are so many reasons to be happy and I can always find some reason to make me feel happy that I am alive. I think of all that I have overcome, things I NEVER thought I would be able to do, but I did. I think of all the good I have done, the messages I get flooding my inbox about how I have inspired them, how I’ve made them look more positive at their own life, how I’ve given them the courage and the strength to overcome their own struggles.

I think of all the people who have told me, “I’m really glad I found your blog. I never knew anyone in my life who I could relate too.” or “You’re incredibly inspirational and it makes the loneliness a little less intense. Thank you.”

I think of all the friends I wouldn’t have today if it weren’t for illnesses that connected us online. I think of all the lives I may have an impact on around me, online, people I’ve never met who I have made their day a little brighter. And I start to smile again, my voice starts to gain it’s chime back, my eyes light back up and I sit up, grab my laptop, and remember that I have so much to be thankful for, so much going for me, and that I am not going to give up, I’ve still got a lot of fight in me.

 

 

Mental Health Correlations With Physical Health

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[Image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of a white piece of torn notebook paper with a red paper clip. On the paper reads in black text “Mental Health Correlations With Physical Health” and a green distressed smiley face. At the bottom of the banner is the URL for TheeCrohnieGrace Blog.]

I’m going to start off with my unpopular opinion which to most physically ill people is not that unpopular of an opinion. So, the posts/videos/etc about “If Mental Illnesses Were Treated Like Physical Illnesses.”, I am not a fan. As someone who suffers from both I can tell you that neither get treated better than the other and the lack of compassion is still there from the majority of the world.

What most people do not seem to understand is that people who suffer from physical illnesses/disabilities are likely to develop anxiety of depression because of it. In almost every support group I have been in, the majority of them were also on some pill for their anxiety or depression brought on by their disease/disorder/etc.

I want to talk specifically on my own experiences with this, because I can only speak for myself, not everyone else. When I first got sick, few took me seriously. My teacher thought I was faking my stomach pain that left me in the fetal position during recess. When I was in the hospital for a long period of time, the teacher and principal both refused to take any of my make up work, kicked me off the student council, and when I got back kid’s called me names because my face was swollen from the high dose of prednisone I was on.

This led to lots of anxiety, depression, and issues with my self esteem. It was a lot more than most kids had to deal with at that age (although now thanks to support groups I know I was not alone in my childhood even).

I started seeing my first psychologist the same year I got sick, was put on antidepressants a few years later. I lost my sense of identity in it all. I wasn’t sure who I really was, depression will do that to you sometimes.

As the years went on, the depression hit its peak, but then started getting better once I started immersing myself in support groups, meeting other young kids, people who had been through more hell than I had, and still managed to keep a smile on their face.

I wanted to be more like those young adults who smiled in the face of their illnesses both mental and physical.

“Recovery is not linear though.” It takes time. And that’s okay. There are still days when I am in so much pain and feel like people don’t get it and I will get depressed, the days when my brother makes fun of me for using a mobility device, the days I worry about ostomy leaks, when my chest hurts and the anxiety sets in.

My mental health correlates directly with my physical health sometimes. I am more likely to get overwhelmed and have a meltdown when I am already in pain, or nauseated, or dizzy because that is a lot of stimuli as it is, and then people will ask you a million questions which makes me uneasy, and then I will find myself agitated before finally escaping to be alone and melting down: crying, screaming, hitting myself.

Recovery isn’t linear. I’m working hard in therapy to better myself, not for anyone else but myself. These things take time, and I will never be perfect because nobody is. And I know that as long as I have my physical illnesses (Crohn’s, Gastroparesis, EDS) that I will always have bouts of anxiety and depression because there are some days when you can’t help but to worry about what the future holds, or get upset over how you may feel robbed of opportunities. It does get better though.

I thought I would never be at the peace of mind that I am now, and it’s because I’m not trying to be someone I am not, I’m open about myself, I’ve met hundreds of other beautiful souls who are struggling just as I do, and while these diseases may be awful, they have given me some wonderful friendships that I wouldn’t trade for the world.

 

 

Behavioral Therapy: A Casual Update

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[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.

3 Helpful Apps for Mental Health

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[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!

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[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! 

 

 

 

 

“Disabled” Isn’t a Bad Word

Blog post

[Image shows three spoons laying on a laptop keyboard with an overlapping  clipart of torn notebook paper with a red paper clip. On the paper reads in black text: “Disabled” Isn’t a Bad Word. Below it is the symbol of a stick man in a wheelchair in red. And at the bottom of the banner is the URL for Thee Crohnie Grace Blog]

“You’re not disabled. You’re just differently abled.” Says the perfectly healthy person to the disabled person.

There are a million and one identifiers that people can use, and it’s all their own choice. What is not okay, is trying to tell someone else how they should identify. And you can say all you want that you shouldn’t label people, or poke fun at “a generation all about labels”, but the fact of the matter is, we as humans, have a need to label everything.

A prime example of why labeling is actually important is taxonomy, which is the scientific process of classifying organisms. The famous system of: Domain, Kingdom, Phylum, Class, Order, Family, Genus, and Species. We group things by their similarities, because it is just a matter of fact that not all animals, and not all people are the same. And that is okay.

Some of these labels include both ascribed roles and achieved roles (roles that are assigned at birth and roles that you gain as you grow up). Disability could fall under either seeing as many are born with disabilities and many gain them as they grow up. It is something that makes us different, but it not inherently a bad thing to be disabled.

When someone identifies as “disabled” it is often met with a lot of “No, you’re not disabled, you are just differently abled. You can do anything anyone else can do. You’re not disabled.” They say it as if being disabled is a bad thing. And as I discussed in the last post, it is not good or bad it just is.

The go to term in my book is disabled. Of course if someone tells me they identify as something else, I will make sure to remember that and use that. Just as I would with a person’s pronouns.

The list of things you should avoid differ from person to person but a good list summary would be not to refer to people as:

  • Differently abled
  • Wheelchair bound/Confined to a wheelchair (it is a negative way to say “Wheelchair user”)
  • Physically/Mentally Challenged
  • Cripple (exception being those with physical disabilities who are reclaiming the slur.)
  • Impaired
  • Handicapped/Handicappable
  • Retarded (Also a slur)
  • Special Needs (They’re not special needs, they’re basic human needs)

These terms have a history of negativity with them, of course some people do not mind, but I would not use them as go to terms before asking. And if you’re unsure what to call your friend or someone, just ask them. I find that most situations can be resolved by just asking. If you don’t know what I refer to myself as, just ask, it may change depending on the day. From disabled, to cripple, to spoonie, all of these are terms people use. The important thing is to remember which terms are okay to call others and yourself.

Obviously some of the slurs you cannot use because they may not be yours to reclaim. I will cover the cripple and cripple punk discussion another day since it is a intricate subculture. But all of the others are up in the air. I once asked a group of people how they identified themselves when asked and there’s a ton of different responses to it.

From “broken”, “crazy”, “chronically bad-ass”, “neuro-atypical”, “neurodivergent”, “disabled”, “gimp/cripple”, etc. There is so many identifiers used and it’s all up to each person. Again, what is not okay is telling someone how they should identify. And it’s not okay to use terms that aren’t for you.

Disability isn’t a bad word. It just has a negative connotation due to society seeing disabilities as tragic or sad, something that make people less than whole. But disabled people everywhere are making a difference in how we are being seen by others now, there is a movement (including the Cripple Punk movement and the Spoonie movement) that is slowly changing that and perhaps one day it will be worldly accepted to say: “I am disabled, and that’s okay.” Without someone insinuating that it is a bad thing.

cripple punk
Cute and Cripple

[Image shows boots laying askew on a hardwood floor in black and white, a cane is propped against one of the boots and is in color. Metallic purple and pink floral print on the cane. In the upper right hand corner is a purple photography logo of a camera with text that wraps around it and says “Grace Shockey Photography”]

“Hope is a Dangerous Thing”: Accepting Things As They Are

Blog post

[Image shows 3 spoons lying on a laptop keyboard. Overlapping is a clipart image of torn notebook paper with a red paper clip. On the paper reads “Hope is a Dangerous Thing”: Accepting Things As They Are” with a pink daisy in the upper right corner. At the bottom of the banner is the Url for Thee Crohnie Grace Blog]

“Let me tell you something, my friend. Hope is a dangerous thing. Hope can drive a man insane.” -Stephen King

There was a moment in my life when all I wanted was for all my illnesses to be cured. I prayed and pleaded with the rulers of the universe that something would happen, a miracle maybe, and I would wake up and not be sick anymore. This was what I spent all day thinking about and wishing for. I became depressed because I wasn’t content with treatments and having a bit of normalcy, I wanted to be like “everyone else” and be healthy again. It was a terrible mentality that I struggled with for years.

And at some point, with the help of friends struggling as well, I realized that I didn’t need to be cured to be happy and feel whole. Everyone else wanted me cured. But I was content for the first time with the treatments, for the good days, for the treatment, instead of wanting more all the time.

If someone were to offer me a cure right now, I would still likely take it, but not for the reasons I used to. Before, I wanted to fit in, be like everyone else, to be seen as their equal. And now I’ve accepted my limitations and I couldn’t be happier. I am whole still. I am no less than everyone else and I have no desire to be cured for the benefits of others.

Even now a days I will have people ask me “Well is that feeding tube going to be permanent? When are you getting that ostomy reversed? You should try walking more without your mobility device?” And it’s because they think these things make my life less than whole, or at least that’s what I imagine.

But I have been given a number of extra good days thanks to my feeding tube, my ostomy, and my mobility device. I have accepted that these things are a part of my life, and it has empowered me and helped me become a happier person overall.

And it’s also just highly unrealistic to hope for cures for everything. My genetics are messed up and that’s pretty hard to reverse, so I would much rather have a good quality of life rather than focus only on curing things. As well as the fact that diseases mutate, much like the million flu strains we have now-a-days. So we may be able to eliminate one of the causes of a disease, but that doesn’t mean that genetics won’t continue to mutate, continue to change and evolve, and then we will end up will a million and one types of said illness.

Plus the “cure mentality” leaves disabled people out of movies, comics, books, shows, etc. Often times when a character becomes disabled it is wrote out of the books, or “cured”. Think Hunger Games, Katniss and Peta both were left disabled after the first Hunger Games but it was completely wrote out of the movies. In the comic books, Hawkeye is deaf, and in the Avengers he can hear. In the DC comics, Batgirl becomes disabled and in a wheelchair up until she was magically cured. And they justify this by saying, “It’s a fantasy world.”

If people can have mutant abilities, why can’t they be disabled, something that exists in the real world. The lack of disabled characters in media is disheartening, not only for someone like me at 18, but for children who are disabled and cannot find anyone to relate to in these forms of entertainment.

Accepting things is okay, it’s not giving up, it can be relieving to accept your limitations and stop trying to pursue something unreachable. It has given me a peace of mind. Being disabled is okay. It’s not a bad thing. It’s not a good thing. It just is. And we need to stop that erasure. I am Grace, I have red hair, and I also have a feeding tube, ostomy, and use a mobility aid. It’s just a fact.