Journey on

My appointment is set for march 13th with a specialist at UW. She is in the headache clinic and right now is working with people with Arnold Chiari! Feel blessed to get in with her but scared at the same time.  For anyone that deals with a brain disorder or daily pain, waiting months can seem forever. My neurologist has upped my topamax to 200mg daily added muscle relaxers to my pain meds, sleeping meds, nausea meds, maxalt. 

I start my third round of Botox in a few weeks. Haven’t really noticed much from the first two rounds but was told by my neurologist to not expect much until the 4th round of treatment. Crossing fingers that something works.. I’ve had a few surgeries, medical procedures, and lots of meds but so far nothing has clicked for my daily headache, multiple migraines a week. So much pressure.. 

It will be interesting to see what happens over the next few months for me. How I will keep this pain to my self and live my life, raise my children, be a good wife, run a business, oh.. Keep a clean house and cant forget about the most important things. Cooking meals and LAUNDRY!! Try to smile while doing it because no one wants to see me in pain, sad, or angry. The mask must go on for a few more months. 

I would love to hear how other people do it. Even if you don’t have Adult Onset Arnold Chiari, or a brain disorder at all. If life is just rough. How do you make it through some days? 


11 thoughts on “Journey on

  1. I write poems, songs, blogs, talk to people, drink my fifth cup of tea, play my ukulele, try to find something to do to make my life better… I had Chiari surgery in 2012, I had no symptoms but the MRI was bad. I don’t know the physical pain of Chiari that you’re experiencing, but I know the surgery. It’s tough…but I learned a lot about love…and appreciating life. I prayed too, but prayer is difficult, but most of my writing was praying anyway.
    So, yea… I have two blogs….Cdukulele and then my blog from before surgery, that you can look at it if you like, just the thoughts of another dealing with the surgery, except I’m 22 and unmarried, so thoughts from a different perspective. -Catherine

    • Thank you Catherine, I would love to learn more about this through your eyes. Everyone I have talked to has had a different experience but yet similar symptoms at the same time. One thing I have got out of all of this online is not feeling alone anymore… Even though I have my family, I have this over whelming feeling of loneliness because no one can understand what I am going through. I feel very lucky to have found this group of people online:)

  2. Yes, well I’d be happy to answer any questions or just talk about it, but off the top of my head I don’t know what to say or what you’d like to know. It is nice to have other people to talk to. Even when I was just composing my first blog posts, for nobody in particular, and just writing them, it’s nice to feel like someone hears and understands. 🙂

    • I feel the same way, im not sure what I want to ask but I know I have so many questions.. I am just so thankful to have you and others in my life now. The last few years have been lonely. Still are a bit lonely but I manage. Lets start out with where do you live? and how long ago were you diagnosed with chiari?

      • Well, Anonymous/inga32?, I’m from California and was diagnosed with Chiari June 2012. I could also make another blog post all about my Chiari if you’d like, and answer more questions, or just keep answering questions here in your blog post comments, as long as nobody minds. – Catherine

      • I figured it out.. I wasnt logged in. stupid me. Im going to blame it on the meds.

  3. Ill go check out your blog. I am new at all of this blogging so I have no clue how to do any of this… Not sure why my last post came up as anonymous?? How long after you were diagnosed did you have surgery?

    • Yes, it is rather confusing, this blog stuff. Like I have no idea what half the buttons mean on any of the pages….I’m figuring it out rather slowly though. I also don’t know whether there is some sort of official or unofficial blog etiquette, like on facebook how if 30 people like your post and you have a comment conversation on it that continues forever then people keep getting notifications and then they get annoyed. I think a lot about things though, and wordpress is definitely not facebook. Though some of my posts are facebook inspired… Anyhow, I was diagnosed in June and then they said they wanted to operate before December, but my doctor wasn’t free until after October. So they were fine waiting 4 months to operate, but reluctant to wait 6. It was REALLY annoying, considering it was my senior year of college, and I went to school in Ohio, so I had to take the fall semester of college off, and risk not graduating on time. But somehow everything worked out. Except that I broke my neck after surgery and went to school in a neck brace for 3 months. I graduated though. It was painful and horrible, but I was really lucky.

      • I almost gave up because of all of the buttons.. Its silly, I am only 32 and should be able to do this but my brain doesn’t work that great. Maybe the pain? Maybe the meds?

        You have Chiari and you broke your neck after surgery?? Wow, that is shocking.. I will keep my questions to a minimum and please only share what you are comfortable with. Were you in pain before you had surgery? Did the surgery hurt? How was the recovery?

        Regarding blogging etiquette, is our conversation on my page something that stays on the page or does it notify our “friends” every time we post.

  4. Too many buttons for anyone….well I was composing a comment here, but it was getting rather detailed so I’m just going to make a post for it. I don’t know if people get notified or not….But yeah…I’m making a post. You will be informed of it’s arrival. It may even be too informative. But I like telling my story. So. yeah. – CD

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