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Ever feel lost?

Thu, April 20, 2017 3:08 PM

So, this is the first time since I have been diagnosed in 2009 that I have reached out to any type of support group, but, after 3 for shit years of surgeries, complications, and changes in meds, well, I need to do something because I am getting pretty darn depressed. 

I started Humira a month ago. It is going okay. I now have liver and kidney and eye problems as well as bone issues and right now, some pretty bad depression. 

So, how do you keep going forward? How do you refocus your lives and keep putting up with all of this? Appointments, procedures, medications, family, work? How do you stop the world from making you feel like you're in some sort of tornado that won't stop? 

I feel like I lost this huge part of myself and I don't know how to put the pieces together anymore. I am used to being the mom, the boss, the fixer, the one who fixes things. Now, I am broken and I don't know how to fix that anymore. 

Does anyone get me? Or am I just depressingly crazy? 

FPO ScarletNoHaira
Joined Apr 20, 2017

Fri, July 07, 2017 2:37 AM

Reply posted for ScarletNoHaira.

Love I'm right there with you. I'm a mother of a five year old beautiful little girl & man does it feel impossible some days. Lately I've just been pushing myself to keep busy; like scheduling play dates where I hang out with the other parent too that way I get myself out of my funk & some human interaction & it helps.

FPO Chronicbadass
Joined Jul 7, 2017

Mon, April 24, 2017 9:44 AM

Reply posted for ScarletNoHaira.

I get migraines with my crohn's... have you tried preventive daily meds for those? Imitrex always makes me feel like crap too which is not helpful when you're already sick. For me the preventive meds (venoflaxin) was a helpful bridge during my flare to at least lessen the migraines. As my crohn's got better I was able to reduce my dose and eventually get off of it.

I definitely understand not being able to explain what it feels like to always be sick.... for me it helped having a friend who had experienced some of this before. She guided me through surgery and "got it" when no one else did. Probably not the easiest suggestion to "just find a friend"! But you could try some local support groups or maybe through your GI. And I'd be more than happy to be e-mail friends if that helps.

Best of luck with the walks!

FPO akr008
Joined Sep 2, 2014

Fri, April 21, 2017 8:18 PM

Reply posted for akr008.

Thank you <3.  So sick of being sick. Husband and family try to understand, but, they don't get it. Hard to explain to someone who is healthy what it feels like to live every day wondering when the next bad day will be or if that stupid last bite of sandwich you took is going to be too much and cause you pain. Just tired.  

I am a writer and a web developer. I don't even want to do that lately and I LOVE doing that. 
Got another migraine today from stupid Humira and took more Imatrex to help with it, but , naturally, its still hurting me and making me miserable. I ate a small bowl of soup for dinner and got nausea and heartburn AGAIN.  I really am starting to hate eating and I LOVE FOOD. I love to cook and bake and nothing goes down well anymore.  

Thanks for the tips. Tomorrow, I think I am going to start going for walks. I need to somehow snap out of this. <3 

FPO ScarletNoHaira
Joined Apr 20, 2017

Fri, April 21, 2017 10:45 AM

Reply posted for ScarletNoHaira.

You're not crazy. 

The depression is SO real and it's hard to get out of. Even when I'm "healthy" I live in fear of the next flare. Everyone is different, but things that helped me when I was in a terrible flare and didn't know what else to do:

  • talk to a therapist
  • exercise (hard when you feel crappy, but when I felt like I had a purpose or some where to be, it helped)
  • reading (nothing was more frustrating than being on diludad and not being able to read)
  • one day at a time

When the meds started working and I recovered from surgery my mood improved. It's still not the same, but being grateful for every day I wasn't in the hospital really checked my reality. 

Best of luck. 

FPO akr008
Joined Sep 2, 2014

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