#but what I'm reading online is scary I read the results and got more scared than w/e joe told. me earlier

[bahrmp3]

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[heatherwitch]

I've just been given a crohns diagnosis and I'm not dealing well with the idea that this is never going to go away. Do you have any recommendations in terms.of dealing with this sort of grief? Any advice or magic you can offer would really help me at the moment. Thank you.

This is going to be really long and probably overwhelming so I’ll categorize it! My hope is that you’ll save this and look back on it when you’re ready for each thing. A lot of it is advice I wish I was given when I was first sick/diagnosed. TL;DR at bottom!

On how you’re feeling:

Allow yourself to feel what you’re feeling, even if thats a range of things. Getting diagnosed with something, especially something permanent, can feel incredibly overwhelming. It can also be a relief, to finally get some answers and validation that you are, in fact, sick. To have some clarity on what’s affecting you and to move forward with the best ways to treat/manage that specific diagnosis.

You can feel both overwhelmed, scared, upset, angry, sad, filled with grief about this and also feel relieved. It’s okay if both of those—somewhat opposite—feelings arise. It’s also okay if you don’t feel relieved, you don’t have to force yourself to find a silver lining in this right now. This is big, and forcing something can mean ignoring/pushing down your feelings. You have time, your feelings will change as you get used to this, let that be a natural process.

Community:

Getting a diagnosis helped me feel like I belonged somewhere. I certainly was welcomed and supported by the online chronic illness community before, but having a clear diagnosis helped me connect with other people dealing with the same things.

Find others who have Crohn’s on whatever platforms you use, tumblr and Instagram are the big ones for me, Facebook has chronic illness groups as well. Follow them, talk with them, get to know other people and learn how they’re managing and what has worked or hasn’t worked for them (and remember that we’re all different when it comes to what helps treatment-wise).

Find bloggers, authors, article writers, etc. who have Crohn’s I’ve found it helpful to read about others experiences. Start light, and if it feels helpful dive deeper. For me, reading about the process others went through helped/helps me feel less alone. Being treated for chronic illnesses, especially as a young person, can feel very isolating sometimes. But you aren’t alone in this, there’s a whole community of people who are going through/have gone through the same thing as you!

Research:

Researching can be helpful, and it can also feel very scary and overwhelming. It can help you feel in control, or make it feel like you have no control over it.

In the long run, being knowledgeable about how Crohn’s works, affects you, the best treatments/ways to manage it, the best doctors/specialists to see, etc. will be helpful. Being a patient means you’ll have to be your own advocate, and that means being knowledgeable. Take it slow. There will be a lot of information out there, and trying to cram all of it in your brain will be exhausting and potentially harmful to your mental health. You have time to learn about this. I’m still learning new things about my illnesses and I’ve been sick for years!

Helpful things to document:

(For documentation I recommend a ringed binder, that way you can organize it as you go)

Symptoms. Make a list of all the symptoms Crohn’s can create. This can help you figure out if symptoms are from Crohn’s, are a secondary thing (illnesses can throw other things out of whack), or completely separate. I’d also recommend making a list of what symptoms are affecting you and the severity, this can be a very helpful reference when meeting with doctors/specialists.

Medications. When I get new medications, I like to know what it’s targeting (why I’m taking it), side effects, and interactions with other medications. Here’s what I’d recommend for documenting it: have a sheet of paper for medications. Either slap the label on it when you’re done with it/get a refill or write down: name, dosage, date started (add date finished when applicable) and side effects/results you experience. This doesn’t have to be fancy, but give yourself the information you may need later.

Blood tests/lab results. please please please print these out and keep them in a binder. I recommend organizing by date and/or doctor. It may not feel helpful now, but being able to look back and see how things change will likely be helpful, and it means you don’t have to do a mass scramble when a specialist wants previous test results.

Visit summaries. Most doctors and specialists will send you a visit summary. Print these out and categorize by date and/or by clinic/doctor. This will be a helpful reference later.

I know that feels like a lot! Start small. Print things when they get sent to you. Write down snippets of information as it’s relevant. Keep it all in the same place, you can reorganize it later. You’re in this for the long haul, and taking small steps now will be a big help later.

Being prepared at doctors visits:

Write things down before your visit!!! It’s so easy to forget everything when you’re sitting in a doctors office. I keep a list of all topics I want to cover (medication changes, different treatments, what I’m having a hard time managing), a list symptoms I’ve experienced since last visit (if applicable) so when I blank, it’s all there, and anything else you want to remember. This is also when it’s helpful that you’ve been documenting things, I often bring my binder just in case.

Using magic:

A lot of my early illness related magic revolved around the dreaded things. Meeting new doctors, getting treatments I didn’t enjoy, taking certain medications. I usually had a calming spell sachet in my pocket, that I could hold when it felt like too much. Sigils and crystals for confidence and clear communication when trying to find the right doctor for me. Sigils and pain relief sachets for IV treatments, soothing magic when side effects hit me hard. I found (and still find) magic to be a great comfort when things feel out of control.

Use it where’s it’s helpful, but don’t force it if it’s not. You already have a lot going on, don’t add the stress of doing something else you don’t want to do. It will always be there when you’re ready!

Spoonie witch masterpost (all health-related magic posts of mine)

Finishing note:

I look back on this time (early in getting my diagnosis) and I feel so much compassion for my past self. I was scared, and didn’t have much hope left of ever getting better by the time I got my diagnosis. But I took small steps in finding doctors and trying treatments and trying to get better. Sometimes things didn’t help, but sometimes things did. And now, knowing what’s helpful and what isn’t shows me what I should focus on next.

I have gotten to the point of managing my illnesses fairly well. I have gotten used to being sick—to a degree. There will always be a part of me that wants to feel like the old me, that says “hey, I shouldn’t have to see multiple doctors and get treatments and take medications and try this hard to be healthy”. But it does start to feel more normal. It won’t always feel like it does right now.

Be gentle on yourself. Reward yourself for doing things that feel stressful. I used to always get a smoothie after painful IV treatments. It was my way of reminding myself that I was doing these things out of love for my body and the hope that it gets better, and acknowledging that yeah, it sucks, but I can still have nice things too.

TL;DR:

On how you’re feeling: It’s perfectly okay to feel a mixture of being overwhelmed/upset and relief in having answers (or to just feel one of those things). Allow yourself to feel whatever you’re feeling, you have time to figure this out.

Community: Other people have gone through this too. Reach out to them, have conversations, read their stories. You aren’t alone.

Research: Being knowledgeable about what’s affecting you is important. But take the research slow, there’s a lot out there and it can be overwhelming. You have time.

What to document: Keep all of these things in the same place. Symptoms (know which ones you may experience and write down which ones you do). Medications (write down date started, dosage, and any side effects you experience). Lab results + visit summaries (print these out as you receive them).

Being prepared at doctors visits: Write down everything you want to cover at the visit, so you don’t forget anything!

Using magic: Use magic where it’s helpful. Use it to help feel in control. Don’t force it if it’s not helpful at the moment, it will be there!

Finishing note: I can’t promise you’ll ever fully accept being sick (I haven’t), but you won’t always feel like this. You will learn what works best/better for you, and this will feel more manageable/normal with time.

[strawberry-milktea]

(1) I don't know if you've struggled with this before but have you ever wondered how you could use your talents in a career that would help others and do God's work? I'm at a difficult point in my life right now. I think what I'm best at is languages. I was raised bilingual in Spanish and English, and majored in Asian Studies with a concentration in Japanese language. I mostly use the first two languages (Spanish with my family, and English because I live in the USA).

(2) My dream was to get a job after graduation where I’d be able to use Japanese since I was super passionate about it. Things didn’t go as planned because I don’t live in an area with many Japanese speakers. I tried looking into things like internships outside my state and country, but then… some bad things happened. First, I had to undergo surgery for a condition I didn’t even know I had. It was a very scary experience, and I feel like a lot of my emotional problems stem from it.    (3) Then, my grandma was diagnosed with breast cancer, and had to undergo two surgeries. She also has severe Alzheimer’s and can’t do many things on her own. I’m her main caretaker since my parents can’t give up their jobs, and I don’t work, so my mom puts me in charge of her while my parents are at work. A lot of other difficult things happened. I don’t have friends because everyone moved on, got jobs elsewhere, got married, etc. while I’m just at home the majority of the time.(4) I get debilitating panic attacks, and there have been times when I’ve not wanted to live anymore because I feel so sad and useless. I feel like at one point, people had high hopes for me, and then I disappointed everyone. It’s been about four years since I took my last Japanese class. Even though my online friends come to me for help with translating things like manga dialogue or Jpop lyrics, I don’t know if my Japanese is even good enough to use for something like a real job anymore.            (5) Also, some medications I was put on to keep my health under control make me light-headed as a side effect, so I sometimes feel slower and more brain-foggy than I was when I was taking classes. I’ve lost confidence in my learning abilities compared to how fast I would learn stuff before. I feel like I’ve been so stagnant these past few years. And it’s hard when I don’t have a support system of friends. I love God. I put a lot of faith in God, I pray every day, and I know He cares about me.    (6, last message) But I still feel lost. I haven’t had luck with finding a job, even part-time jobs that have nothing to do with Japanese. It’s hard. It’s just tough convincing myself that I haven’t messed up, and that there still might be hope for me. I’m sorry if I’m bothering you but I was wondering if maybe you could give me suggestions on how I could possibly start fixing myself so that I can be of more use to God. Also, prayers for me and my family would be appreciated. Thank you so much.      —Hi there,You aren’t bothering me! I apologize for taking so long to respond to this. First thing I want to address in this message is you say it’s hard convincing yourself that you haven’t messed up.. Why do you feel your career going differently than planned is a result of you messing up? You couldn’t help that there were not any job opportunities in your area and that you needed surgery that set you back in terms of looking for jobs.. Generally speaking, being unemployed and searching in the job market is a tough spot for anyone to be in, regardless of which career it is. The job market has been difficult for quite sometime now.. I remember when I was between jobs, it was hard to just get an interview and a chance to prove myself, so the idea of actually getting the job can feel very discouraging nowadays. This isn’t your fault.. people who are qualified for jobs have difficulty finding them simply because the job market is saturated and there is competition. A lot of times, people know someone on the inside who puts a good word in for them and that’s how they get their foot in the door. You shouldn’t feel like it’s your fault that it’s been difficult to find work. Honestly, find comfort in the fact that you are certainly not alone in this struggle. I have definitely struggled with wondering how God could use me for His work in the career I went to college for. Like I mentioned above, there was a period of time I was out of work because the job I had been promised for after graduation fell through due to budget cuts. During the period when I was between jobs, there was a long stretch of time where I wasn’t getting any interviews and I fell into a very negative mindset. I was feeling angry with myself and completely discouraged, wanting to give up on the career I worked so many years for. The enemy was really doing a number on me during that time and I kept telling myself, “This is useless, I don’t even understand how He could use a career in healthcare to spiritually help people. I wasted all those years in college on something I can’t even find a job for and won’t even help people spiritually and give me chances to do His work.” But in His timing (and there was a good period of waiting I had to do), He opened the right doors for me and once He did, things fell into place effortlessly. I saw clearer how every door I tried to force open in my own will didn’t open because He had a reason. He wanted me a certain place in the time He set for it, and the ones I was trying to push for in my own power weren’t it. And in hindsight, I realized He was protecting me - because I later found out one of the places I had been interviewed for and thought was a serious possibility was a really unhealthy work environment that I would have been very unhappy in. Instead, when He opened the doors, I ended up in work environment where I could truly flourish and learn. I have coworkers who are caring and teach me what they know and in turn, I teach the people who come after me what I learn. I’ve built my confidence and became more independent in my job, in ways I never thought were possible because I trusted Him to do the work in me where I was unsure and scared. I came to realize that you don’t have to work in a church to be able to do His work. It brings me joy to show my coworkers love and help them when they need it. I know how much it means to me when people help me when I’m overwhelmed by a large workload or am facing something that is confusing to me, so I’m more than happy to return that favor. I hope when I show them that care and love coming from my heart, that they can see Christ’s love in me. I’ve learned that you can show Christ’s love by being there for people when they feel comfortable enough to open up to you during a quiet moment at work about something going on in their personal lives. I show love for the patients I’m playing a role in helping during their time of medical need by treating them as I would my own family. And I wouldn’t have ever thought ahead of time that it was possible at work, but He has opened opportunities for me to witness for Christ by sharing His Word with a coworker I befriended who opened up to me about emotional pains and regrets he has been dealing with for many years. I’ve written down quite a bit of scripture for him and even got to give him a Bible. This experience taught me that He has work for us in any setting, even settings we may think are the least likely.I understand that there are many factors that pose challenges for you in your situation, but always remember that all things are possible with Christ. Your mom has likely put you in charge of taking care of your grandmother since you are still out of work, but I am guessing that if you were to find a job, she would work with you to make arrangements so that you can start putting your career in motion? If you are concerned about your grandmother having proper care when you find a job, I would suggest to definitely talk with your mom about this. Regarding the panic attacks, I can only imagine how upsetting that must be to deal with, but it doesn’t mean you won’t be able to find and hold a job.. same applies to your loss of confidence in learning abilities. It’s very easy to be fearful that you can’t do it when you haven’t done something for a long time. I’ve been there, I know that scary feeling. But once you get into the routine of a new job, you will see it’s not as frightening as you think it is. Your confidence will grow with each passing day as you see yourself doing what you thought was impossible. Find peace in the fact that panic attacks and lack of confidence are not too big for our God to handle. Trust that He can and will carry you through this!I hope reading about my experience encourages you with the truth that God can and will provide opportunities at your future job for you to do His work.. even while you are waiting to find a job, you are still doing His work by taking care of your grandmother. Taking care of a sick person is something that requires a lot of dedication, love, and sacrifice. It’s not an easy job and is definitely not something that everyone is cut out for. It’s honestly very admirable that you are able to do this! So don’t lose sight of that.I will pray for you and your family.. Don’t lose hope and seek Him for guidance as to what steps you should take next. I hope this has been helpful to you and if there’s anything else you want to talk about, please feel free to message me!