Another Week in My Crohn’s Life

This week has been another that I’ve spent at home, dealing with myself and my never-ending issues.  I was prescribed with Imitrex, to help with my migraines, so they have at least been manageable this week.  I have been taking my Budesonide for 30 days now, with no change in my symptoms.  I am wondering if it will ever work if it hasn’t helped already.

My skin has gotten worse, especially near my face and neck, but I have yet to schedule a dermatology consult.  It comes and goes, but this week I have found numerous visible sores, which of course were invisible during my last appointment.  Go figure.

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Maybe I’m just being self-conscious about it, but I hate them.  I need to see the doctors, dammit. Hurry Up and Wait with the VA.

I have called the VA a few times this week, to discuss my hand x-ray results from last week, which we’re described as “unremarkable and do not require further investigation or treatment”.  When I called my primary care doctor, we ended up playing phone tag because the nurse wouldn’t just transfer me; I finally spoke to her.  We are still planning a referral for occupational therapy, and she still believes I will have to brace/splint both of my hands for a month.  Woo-hoo?

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I have also been trying to contact the GI clinic to schedule my Meckel’s scan.  When I called on Monday, the phone rang and rang and rang, and I never spoke to anyone in the clinic.  When there is no answer when I call, I have to hang up and repeat the call.  I have to follow all of the telephone prompts again and try to speak with a real-life person.

I had to recall and speak to telephone care, where they tried to ‘help’ me, but really just put a few notes in my file, “patient wanted to discuss the Meckel’s scan”.

No, I wanted to schedule the scan, not discuss the scan; I can research it myself.  This reminds me of the difficult patient Seinfeld episode, with more notes added to my file. 

When telephone care tried to reach the GI clinic, they also received no answer.

I gave them a few days to return my call, and I tried calling back yesterday afternoon.  I mean, someone has to be at the phones by now?  When I tried calling the GI clinic, again no answer and the phone just continued to ring off the hook.  Side note – Every time I go to this clinic, there are at least 3 nurses talking behind their help kiosk, gossiping or talking nonsense, which only makes me question why there has been no answer for 2 days now?

So again, I had to call back and speak with telephone care and try to schedule this scan.  I told them my situation and about the apparent lack of personnel in the GI clinic, and that I have yet to speak to anyone when I was referred for my scan 12 days ago, yadda yadda yadda.

This may not seem like a long time, but to be home most of the time, with issues, is really beginning to stress me out more, which in turn makes my stomach upset; a never ending cycle.  I want to get things done urgently once I know the intended plan, and it’s already gone on long enough.  Issues are all I can think about, all I stress about, and it has consumed every aspect of my life lately.

chronic-illness-cat:  from the amazing adhdandcats.tumblr.com[picture of a Siamese cat’s head against a triangle-sectioned background with many shades of blue. Top line of text reads: No one should have to  || Bottom line of text reads: think about their rectum this much]  Perianal Crohn’s yaaay:

The telephone care representative transferred me to the doctor, Joanna.  This is the person I have been trying to contact all week, but unfortunately, I was sent straight to her voicemail.  This informed me that she was not available today, but would ‘return my call, next day’.  Well, today is next day.  I will be expecting a call.  I have the time and will to harass the VA if it will make me feel better, trust me.  * UPDATE: Meckel’s Scan on Thursday, April 21*

I seem to find myself constantly complaining about either my skin or my stomach, and I am probably annoying the hell out of poor Philip.  This week we had to make the decision to cut pizza, and all things related, out of our diets.  My stomach never feels too good after I eat, and it feels even worse when I wake up.

In the mornings, Philip wakes up first.  He takes Bilbo out, makes coffee, and gives Bilbo his ‘Morning Treat’ – a ‘treat’ with vitamins for healthy joints.  Once he is showered and ready for work, he wakes me up.  I am NOT a morning person, and I hate getting up early.

It seems in the past few months, as soon as he wakes me, I have stomach pain.  I get a ‘look’ to my face and he knows I already don’t feel good, moments into my day.  Sometimes, I don’t even get but a few moments with him before he leaves for work because I am dealing with these issues immediately.

Damn Crohn’s, I just started to like pizza, and I will miss lasagna being a staple meal in our home.

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I have mentioned before that I am not sleeping well.  I am either waking up in a hot flash in the middle of the night or tossing and turning all night.  I think my dark eye circles are becoming permanent.  When I look at my Fitbit stats and sleep quality, I am restless quite a few times in the night.  I have seen nights with only a few restless moments, like 10 to 15, and nights with upwards of 25 times or more.  I don’t know how to read this, technically, but I can only assume it is hurting my REM cycles, right?

So for me, the ‘Crohn’s’ so far is a waiting game.  I have not spoken with occupational therapy or dermatology about my referrals yet, and I have not spoken with GI.  I wait to speak with doctors, I wait for test results.   I wait to be seen, I wait for scheduling.  I wait to see what the medicine will do, and I wait for it to start working.   Issues mean I wait.

Not only do I wait, I hurt.  I stare at myself in the mirror and I find impurities that no one else can see.  I look at my body, trying to see if there are any visible signs of my illness.  I search my body for sores, for pain, for bruises.  I live in my bathroom some days.  I’m either trying to figure out what I should say to my doctors, trying not to forget anything that is happening, because I know it’ll up and vanish on the day of my appointment, go figure.  I cry.  I take my medicine every morning, and I try not to throw up or dry heave.  Most days I won’t eat lunch because my stomach just feels wrong.  Yeah, my life is so glamorous.

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Welcome to my office

To some, staying at home and not working would be an ideal lifestyle.  To some, I am considered lazy or milking my sickness, expecting something from the ‘world’.  Some will say “Everybody is tired” or “Everyone gets sick”.  Some even say it’s all in my head, which is highly doubtful, considering the thousands of dollars the VA has spent on fixing me.  If I miss an event, they take it as being spiteful.  They have no idea what I am dealing with every day.  Every Single Day.

Crohn's and Ulcerative Colitis:

I want to eventually get my hair license in Ky, and I want to work in a local salon.  I want to write, and I want to be able to NOT worry about having issues in public.  I want to not be embarrassed to show my face or skin.  But I have to worry about these things, all of my symptoms and all of my appointments.  Getting better, that is my job for now.

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So, another week has come and gone in my crazy-boring life.  I finished another week of school, wrote more essays for my classes and collaborated with my online team.  I found more symptoms and I lost a few.  Philip and I watched a few movies, walked Bilbo a few evenings, and just spent time together.  In between, I managed to create a Facebook page for this blog, bought my first website domain name, and I may have found a few opportunities to guest blog and collaborate.

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I Pinned a little, I mean, I have to do something, right?  I tried to share my blog and reach out to as many people possible, and, I reached over 300 views in an afternoon!

I can now get my hair into the smallest of ponytails – major news for me, since I have had short hair for years.

Also, Philip scheduled an appointment with his primary care physician!  Now we can get more insight to his fertility before I see my next doctor for that issue; fingers crossed for good news!

I guess it could be worse.

Thank you for reading!!!! 🙂

More Info On Crohn’s Disease at www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com

For more information about infertility and the VA, please visit Resolve & VA.Gov

Also Found: Huffington Post

My Next Post: The Last Time I Cried

All Images Mine or from my Pinterest.

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6 Comments Add yours

  1. Rica@ Yoga Mat Monkey says:

    So sorry for all your trouble. But the title of your post drew me in, and your optimism and sense of humor about this whole thing will carry you through it, I think. You WILL get better. You WILL work in a salon. You WILL write. All the best. 🙂

    Liked by 1 person

    1. Thanks for reading and the enthusiasm! I do appreciate it!

      Like

  2. Melissa says:

    Thank you so much for sharing your story! I know exactly what you mean about the waiting game. You call to say you’re in severe pain and they say they can see you in two weeks. Meanwhile every one of those 14 days feels unbearable. Sometimes I feel like the only way to be taken seriously is to go to the ER, which of course isn’t desirable.
    I wish you luck with your scan this week. I was previously on Budesonide and it didn’t work for me either, so now I’m scheduled to start Remicade, of course, in two weeks. And the waiting game continues…

    Liked by 1 person

    1. Thank you for reading, I knew people would find it relateable. Its especially bad with the VA healthcare, I wait 3 months for a follow up? Chaos. I hope you get relief and wish you well with the Remicade. Keep us updated!

      Like

  3. scrambledeggsandsundry says:

    Dealing with healthcare is a nightmare in itself, and the VA sounds absolutely horrible! So sorry you are going through this. I just wrote yesterday on my blog about diseases that people can not outwardly see; Crohn’s definitely qualifies. People may think you are milking it or that your life if so great, well they have less than a clue what you are going through. Just focus on yourself and getting healthy. You are your own best advocate.

    Liked by 1 person

    1. I can’t agree more. Having multiple invisible illnesses, its hard to explain to people that my insides are broken, they just can’t see it. *Hugs to you*

      Liked by 1 person

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