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Ocular Immunologist is fun to say & check out Bitter Infertiles

10/03/2012

Belle

First things first: I had the absolute pleasure of speaking on the Bitter Infertiles podcast Saturday! Y’all, it was so great to actually speak with people who not only know my story (read my blog) but who are also struggling with infertility. It was even more comforting to know that my words and my struggles might help other folks.

Quick warning before the link, though. I speak a lot about miscarriage and loss. For those who feel this topic may be triggering you should consider skipping this podcast. Sensitive as the topic of miscarriage is, it is tremendously important and something I believe needs spoken about. As I wrote on Monday, outside of the ALI community I have found VERY little support and if I continue to sit silently nothing will ever change. So I’m putting my loud mouth and fast typing fingers to work.

You can check out Episode 6 here. 

How many of you all find it overwhelmingly awesome to hear the voices of bloggers you have read for weeks, months and years? I’m always shocked at how similar a blogger’s actual voice is compared to how I imagined it based on their written words. I really feel that writing conveys SO MUCH MORE then what meets the eye.

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Let’s take a moment and use our voices to say this out loud because it has a delightful way of rolling off your tongue: Ocular Immunologist. Am I right? Or am I crazy?

Whatever your take on the way Ocular Immunologist sounds, Dr. Kaplan was fantastic. I met with him back in March 2011 during the height of my sickness and was wowed by him. After several years of sub-par medical care in Lexington I have an entirely new opinion of this doctor – he is AMAZING.

Much like Dr. B, Dr. Kaplan is soft-spoken and gentle. As soon as he walked into the room I felt a sense of peace. Thankfully my eyes are again in remission. According to Dr. Kaplan there is little evidence of declining ocular health, and little serious damage. This is a stark contrast from what I heard from the last doctor who shook his head and muttered doom and gloom.

Yes, I have chronic uveitis. Yes, if not properly managed it could cause long-term damage and/or blindness. No, my eyes are not going to shut down anytime soon. Yes, I can continue IVF.

Dr. Kaplan wants to maintain me on a low dose of steroid eye drops as we continue infertility treatment and monitor me every three months. I like this – 3 months is good. Low dose drops are good, too.

I also signed up to donate a vial of blood every three months to help with research into uveitis that Dr. Kaplan is conducting. I’m so, so happy to do this as every little bit they can learn takes them that much closer to a cure or more effective treatment.

I talk about seeing the right doctor for your ailment on Bitter Infertiles and I want to reiterate it here – ALWAYS see the doctor who specializes in your disease. Be it an ocular immunologist for uveitis, a reproductive endocrinologist for infertility, a cardiologist for heart disease, etc. You would not call a plumber to fix your electrical problems, right? If I have learned anything through my journey with autoimmune disease and infertility it is that the right doctor can make all the difference.

Does it suck that I spend literally hours in the car every month driving to see my RE, my eye specialist, my asthma specialist, my rheumatologist, my psychiatrist, etc? Absolutely. Is it worth it for continued health and well-being? Oh my gosh yes. You can’t put a price on your health – see the proper doctor for your condition and if you don’t feel that specialist is working for you FIND ANOTHER.

Now, I’m off to see Dr. B and check on this uterine lining that I very much hope is finishing off a third stripe and preparing to meet our beautiful embryos. It feels like a two-post kind-of-day so look for another update on the State of Belle’s Uterus this afternoon!

 

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7 Comments

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  1. SRB #
    October 3, 2012

    Really looking forward to Ep. 6, but trying to work up the courage to listen to it. I know there will be tears no matter what…just want to make sure I can take it. Very brave of you to speak out this week. 🙂

    I LOVE how much you advocate for getting into see the *right* person for your disease. Yes! Advocate for yourself as a patient! Don’t accept sub-standard care, even if that means a shitty bedside manner (it’s important!) Always seek the best – you deserve it.

  2. October 3, 2012

    Gaaa! I just heard the voice of Belle!!! It is really cool, because your real voice definitely sounds like the “voice” I hear on your blog. Very happy that you saw the good eye doc, too. A good doctor can give you such an infusion of confidence.

  3. October 3, 2012

    You’ve been having such great luck with doctors lately. Thank goodness. I’m glad that everything is going okay and that he’s going to monitor you closely from here on out!

  4. October 3, 2012

    Good luck with your Uterus!

    (Is it weird I’m cheering for another woman’s uterus?!?)…screw it.

    Go Belle’s uterus, you can do it!
    Put another stripe onto it!
    Gooooo Uterus!!!!
    😀

  5. Vanessa #
    October 3, 2012

    Loved the podcast! I know what you mean about hearing bloggers’ voices — Mo’s, especially, was EXACTLY how I imagined it sounding! And I think there’s really something to be said for being able to listen to actual women speaking about infertility. Blogs are amazing and possibly go more in-depth with stuff, but feeling like you’re sitting around with a bunch of friends is very cool. Can’t wait to hear how the appt. goes…

  6. October 3, 2012

    I’m half way thru episode 6. So nice to hear your voice:) Had to stop because the tears were starting and I was almost to work. But bravo to you and the bitter infertile ladies for speaking so eloquently and honestly about such an important, personal and painful subject. I will finish listening on the way home, and, as always, will be routing for you and this transfer.

  7. October 3, 2012

    I’m so glad that you had a great appt with your new specialist! Having to deal with the stress of your uveitis AND infertility must be difficult, so knowing that you have a great doctor on your side should help.

    I hope to hear great things about the status of your uterus later today!

    I’m behind on my podcasts…must get back to listening to them.

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