Hello, 2014!

Written by on January 3rd, 2014 – 11 Comments

HAPPY NEW YEAR!!

I hope you’ve all had a great holiday season and that the new year brings with it a fresh start; just remember, go easy on those resolutions!  😉

As a new blogger to this site, I thought I would take a minute or two to introduce myself.  I’m Ashley, a flower-loving, 30-year-old living in Port Credit Ontario.  I was introduced to our complex MS-world this year, having experienced my first ‘flare-up’, Optic Neuritis in my left eye in late April.  It greeted me just two weeks after I defended my thesis, and took my vision in a matter of days.

Here’s how it happened:

Monday: Headache and a dull pain behind my left eye, L-shaped floater formed by the evening.  It was in my central vision field but I did not find it alarming, I figured I was just tired and stressed from school/work.

Tuesday: L-shaped floater spread to my entire eye, it looked like I was looking through a very dirty window.  No matter how hard I tried or blinked, I could not see clearly and it became excruciatingly painful to move my eye in any direction.

Wednesday: I made an appointment with my optometrist and was lucky enough to get in to see her the next day.  She discovered/showed me the optic neuritis, and after reviewing my family history, she recommended I see my family doctor ASAP to be tested for MS.

Thursday: I managed to convince the secretary at my GP’s office to slot me in as a double-booked appointment and was seen first thing in the morning.  After a long chat and a brief physical exam, she assessed my situation as an emergency and pushed an appointment with a retina specialist.

Friday: The appointment with a retina specialist reconfirmed the neuritis and I began my precautionary journey to a neurologist who was kind enough to see me during his lunch hour.  I was rushed into his office to ensure I did not have any masses on my brain, to schedule my first MRI and to receive three rounds of high-dose steroids from the ER.  Oh!  And just to be safe, they took blood to test for any other condition that may disguise itself as MS.  I was terrified.

Looking back, that was probably the scariest, most exhausting week of my life, but despite all the added stress and anxiety I’m insanely grateful for my doctors.  I’m really lucky to have them and got to see some pretty incredible people very quickly.

Fast-forward 8 months and I have about 80% of my vision back, 5 MRIs under my belt and most recently, a confirmed diagnosis.  My current treatment plan includes an injection once a week, vitamins, yoga, a vegan diet, light walking and a lot of love.  I’m blessed with an amazing family, friends and a boyfriend who moves my world; together they form my support group and keep me on track.  I can honestly say, I don’t know who I would be without them!

In true academic fashion, I have surrounded myself with books, journals and research articles, primarily to keep my mind busy (and my new-found anxiety to a minimum), but also because I feel that knowledge is power!  Although we have an unpredictable disease, being prepared for its ups and downs has provided me with a boost of confidence and has deeply encouraged me to continuing using one of my most prized possessions, my brain!

Throughout my MS journey, I have discovered a great sense of community, and it thrives on the kindness of strangers.  Online support groups like this are an important part of our journey and I’m honoured to be amongst all of you.  I’m proud that we’re taking these steps together by helping one another in tough times and by celebrating our victories.  Often, I have turned to these support groups for clarity, advice and most importantly, well for support.  I believe in these relationships and have experienced just how powerful they can be, thank you all for being here.

I consider myself to be an optimist but will be the first to admit that my anxiety can get the best of me at times, especially in the wake of my diagnosis.  When I put things into perspective, I’ve realised that while I am ‘sick’, my MS does not define me, and that I have recognised the value of self-care.  I feel a great sense of betrayal by my body and have had to learn who I am as a person, sister, daughter, friend and girlfriend with a chronic illness.  It hasn’t been easy and I have hurt some of my relationships with pity parties that have lasted too long.  However!  I am learning everyday and can’t expect to get everything right on the first try, all I can do is respect myself by listening to my body, by being gentle when I make mistakes and by growing from the experience.  Everyday is a new day with fresh opportunities!

To close my intro blog, I’d like to thank you for taking the time to read about me, I really appreciate it and can’t wait to write more!  I look forward to getting to know each of you and would love to hear any comments/questions/concerns you may have for me!  Lets keep in touch!

Warmest Wishes,

TheFloweryOne

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11 Responses

  1. danben says:

    Happy New Year Ashley! Welcome to S&M I mean SLM 😀 MS can be so overwhelming, it can be crippling to mind, body and soul first learning of the diagnosis, we all inherit varying forms of the disease but we all proceed the very same way-we all don’t give up. Glad 80% of your vision is restored and you have a loving support system and oh yeah write more!

  2. Welcome Ashley! So sorry to have to welcome you as a new member of the demyelinating club. That other disease that may disguise itself as MS? I have it. I was diagnosed with MS 6 years ago and just over a year ago, was rediagnosed with NMO. The NMO test has a 40% FALSE negative rate. (I blogged here about it, if you’re interested in the whole story.)

    Anyway, hope your vision has recovered. The first year after being diagnosed is the hardest, but with time, you will make adjustments. So glad you are blogging with us! 🙂

  3. Thank you danben and Lelainia for your warm welcomes and kind words, I’m humbled by them and find great comfort being here, despite the bittersweetness of it all. 🙂

    I have so many blogs to catch-up with and I will definitely be spending time with yours Lelainia!!

  4. Loribelle says:

    Welcome to the SLM community! I look forward to reading more of your future blog posts!

  5. TheFloweryOne says:

    Thanks Loribelle!!

  6. Lindsay says:

    My symptoms were also fast progressing when I was diagnosed eight years ago and I understand how terrified you were. I can’t speak to the health care system in Ontario, but I know here in Alberta people criticize that there are long waits and poor care. My experience was similar to yours that when I was sick…like really legitimately, need a doctor now type of sick, the health care system was there to support me and get me in to see the right doctors, right away.

    Also, high-five to you! You seem to have started the processes of getting your head wrapped around your diagnosis. It isn’t easy and it will never be complete. Balance is important and you don’t want to live your life as “Debbie-downer”, but never feel guilty about feeling the feelings. Take care!

  7. TheFloweryOne says:

    Hi Lindsay!
    Thank you for sharing your story! I have found the same to be true here in Ontario; our healthcare system does tend to echo what your wrote. I’m grateful that you also received the help you needed, we don’t hear enough of these stories!! I appreciate your kind words, it definitely hasn’t been easy and I’m striving for that balance everyday, I hope we can all get to that point, even if only a version of it.

  8. justin003 says:

    Hi flowery one , as yours and others mine also came on hard and fast when I was 22 , now 26 feels like it’s trying to progress it’s self again but I think I need next dose of injection, glad to hear you are copping well and anxiety does get the best of the best sometimes, have you found you have lost friends ? Or once boys find out u have ms they won’t date? I have these problems but with girls, mean world

  9. TheFloweryOne says:

    Hi Justin!
    Thank you for your response here – I hope you’re feeling well and that your MS is not progressing. Are you on a specific treatment and if so, how often do you take it?
    As for the friends/dating world, I’ve been lucky in that I never had a huge circle of friends to begin with, and those I have chosen to keep around me have been understanding. It’s my family that I’ve had to work with that most and have had urges to push away, especially when I’m not feeling well. It’s difficult to feel better when those around you care more about their own feelings towards your disease and how it should be managed rather than how you’d like to handle it, it’s tough!
    I’ve been with my boyfriend since before my diagnosis, so I cannot comment, however I have heard stories where others have experienced judgement. A mean world indeed, but anyone (friend or otherwise) who would do that is often ignorant to our ‘sick’ world and can’t see the wonderful person dealing with it. The only way to get beyond it is to educate; communication is key. I’m sorry that you’ve had to deal with that on top of your MS, nothing about our disease is easy. I’m glad you’re here though, this community has been my saving grace at times. Please keep me updated on things!!!

  10. Frank Capogreco says:

    Hi Thefloweryone,

    Your story is an inspiration. As someone who has rheumatoid arthritis and transverse myelitis, I can tell you that you are not alone. Don’t spend a lot of time thinking about what you used to do in the past but try to live in the moment.
    Frank

    • TheFloweryOne says:

      Hi Frank!
      Thank you so much for your kind words, I hope you’re feeling well. I appreciate you taking the time to offer your advice, it has been a very hard journey, but as you said, I am working to live in the moment. Taking things one day at a time.

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