the patient celiac


12 comments September 21, 2014

When I started this page in 2012, I never anticipated that I'd make it to the 100 post mark, but here I am. I am going to treat this post as a brief update. My disclaimer is that this is a very personal post, and has very little to do with with celiac disease, so if you follow my page for celiac and/or non-celiac gluten sensitivity information only, then you should probably stop reading now...

It's been a hectic last few months for me, in all regards, and my celiac disease passion, advocacy, and writing efforts have really fizzled out. Here’s what’s been going on, in a nutshell:

I had a recent breast cancer scare. In early August I found a painless lump in my left breast during a self-exam that I had never noticed before.  I went to see my primary care provider after about 2-3 weeks, as the lump persisted and slowly grew in size, who ordered a mammogram and ultrasound. I was ordered to wait 2 weeks to have the testing done, just to make sure that it wasn’t a fibrocystic change related to my menstrual cycle. Even though I knew that the odds were in my favor that it wasn’t breast cancer, I was extremely anxious and scared. I kept imaging the worst-case scenario of leaving behind my husband and 4 kids without a wife and mother.  Fortunately, the lump ended up being a totally harmless lump of dense, fibrous tissue. The entire experience really made me step back and examine my life and priorities and made me reflect on how grateful I am for my family, friends, and my health. It gave me a much needed reality check.

We have added an addition to our household. My 14 year old niece has moved in with us for this school year, and although she is a great kid, I totally underestimated what the transition from 4 to 5 kids would be like in terms of groceries, laundry, extra-curricular activities, etc.  The blessing is that we are getting to know her better and she gets along really well with our little ones. And she babysits!

I went through a series of job interviews and I’ve signed a contract for a new job that will put us back near my husband’s family in Boston. We will be moving next summer, in 2015, right after all of my kids finish school. I will still be working full-time as a Neonatologist, but in a totally different type of hospital setting, and I’ll work less weekends and nights.  I hope that this will be the last move we ever make, at least until our kids are raised and out of the house (but as I’ve learned, you never know that the future will hold).

I have continued to train for the NYC marathon on November 2nd in which I will be running on the Celiac Disease Foundation’s Team Gluten-Free. My training runs have been going well and I hit the 16 mark last week.  Running has truly helped me to maintain my sanity over the last few months (along with some very supportive family and friends). As of today I am $430 away from reaching my goal of $3500. If you are interested in donating, you can do so via this link to my fundraising page.

I applied for the University of Chicago Celiac Disease Center’s Annual Preceptorship Program in December. I have no idea if I will be selected or not, but I thought it wouldn’t hurt to apply. If I do get selected and have the opportunity to participate, I will learn a lot of new information that I can hopefully share on this page with you.

I hope to be back soon with a Fall 2014 journal club. In the meantime, many thanks to Shannon for her guest post last week about being newly diagnosed and for helping me to keep my page afloat. I hope you all are doing well and I wish you a Happy Autumn!

In reply to Jen.
Hi Jen,
Thank you so much for your kind words. I hope that your daughter is feeling better as she heals.
I would love to connect once we move to Boston in June. I actually have family members who live very close to Dedham. I will reach out to you next year and I will probably post a bit about our move on this page as well.
All the best to you and your family!
7/26/2016 2:32:32 PM
Hi Jess,

My 6 year old daughter was diagnosed about 3 months ago with Celiac and we have had quite the journey going gluten free. I just wanted to thank you for your blog which I came across today. It has been insightful.

We are in Dedham, MA, so if you need any help connecting with GF restaurants or groups, I’d be happy to pass along any knowledge I have picked up on our short journey.

Lots of luck with the marathon, school, move – everything!

7/26/2016 2:31:11 PM
In reply to Jess.
Dear Jess,

“You go girl” I meant on my previous post about your running (amazing!) the NYC marathon. : ).

You are the real deal and I’m here to support the cause and if I can help you whenever I can. I’ve got a link to start with though! xoxo

Not knowing is the actually the worst part when it comes to our health in my opinion; everything after is embracing change with a positive attitude. Your website gave me hope and want more to find this!

Happy Halloween and all the best to you, your readers, and the continued effort,

7/26/2016 2:30:33 PM
In reply to Avalon.
Dear Avalon,
Thank you so much! Your message actually brought tears to my eyes, as being able to share my story and info I’ve learned has been my primary motivation for both starting and keeping up this page. Knowing that you (and others) are feeling better is the best reward that I could ever receive. Thank you for reading, commenting, and for all of your support. I really appreciate it.
7/26/2016 2:29:06 PM
Dear Jess,

I want the whole world to know what a difference you have made in my life!

I had reached out to you before with regards to symptoms and challenges that had been affecting me based on your amazing website.

Saw my doctor, had all the tests you’ve recommended to do and learned I was CD free but wheat intolerant. Had a pretty severe vitamin deficiency because of the fear to eat pretty much anything. Jess had given me great recommends on what to ask and have checked during my visit. She nailed it! I am now taken the proper vitamins/supplements and really loving the food and lifestyle options recommended (many from Jess here after my diagnosis).

Have more energy and running again! With my only son in his second year in college as a double major in law and psychology, looking forward to his return for Thanksgiving with yummy GF additions!

Most importantly, Jess, you are an inspiration, devoted, a fighter and lovely! I may not know you personally, but #100 is more precious because you have gone/going through so much and continue to be here for all of us. In this time, know that that you will continue to flourish. I will be thinking about you.

NYC marathon! You girl! MA is lucky to have you back. : ).

I’m not surprised you received the preceptorship – you are the best choice. Period.

Happy Autumn to you Jess and all your readers.

Much love
7/26/2016 2:28:47 PM
Paula @CeliacCorner
In reply to Jess.
Congrats on the preceptorship ! Looking forward to your future posts!
7/26/2016 2:27:17 PM
In reply to Paula @CeliacCorner.
Hi Paula,
It is so good to hear from you.
We are absolutely thrilled to be returning to MA (moved away from there in 2006) and I sincerely hope that our paths cross once we are out there next year!
Also, I just found out that I got accepted into the preceptorship, so I’ll share all of the new info I learn on this page this winter. I am excited to be able to go “back to school” for a few days.
I hope that you and your family are well and enjoying your Autumn too…I feel like we’re all being rewarded for surviving last winter!
7/26/2016 2:26:55 PM
Paula @CeliacCorner
Jess, Happy Autumn and thank you for sharing your recent news with us … the good, not-so-good & the unexpected!. Yes, any new lump would leave me “anxious and scared” as well, because you just never know for sure how it will turn out. So glad it did turn out well for you, and the experience left you appreciating all you have, all the more! (Yes, life is such a gift and we need to tell our family members we love them everyday!). Congrats on your new job offer, excited to share Massachusetts with you! Good luck with the November 2nd run and hope you get accepted to the Preceptorship program! You will!!
7/26/2016 2:26:06 PM
In reply to shannon.
Thanks so much for your help and kindness Shannon! I am so thankful that we have had the opportunity to connect. I just found out that I was accepted into the preceptorship that I mentioned in the post, so my passion for CD is coming back! But, I will definitely let you know if I need help. Also, as the time nears we’ll have to touch base about the next ICDS.
7/26/2016 2:25:18 PM
In reply to Vik.
Hi Vik,
It’s good to hear from you! It’s such a beautiful autumn here that I have literally spent all of my free time outside and with my kids (and not on the computer). I know exactly what you mean about the CD “tunnel vision” and the cancer scare really helped to knock me off that path, at least for a while!
7/26/2016 2:24:33 PM

Wow! What a few months you have had. I am exhausted just reading about all of it. I used to run a Breast Clinic so I understand the anxiety in waiting for absolute results even when everything looks like it is ok. Being in the medical profession, we both understand that nothing is absolute until you get the results back and the results are not always what you expect. Ironically, I recently have read a few studies where having Celiac decreases your risk of breast cancer, go figure :-)
I want to thank you for allowing me the opportunity to share my story on your website for two reasons. One, it was incredibly cathartic for me so thank you. The other reason is that it means that you trust someone that you have never met in person to do the right thing and support your website in a positive way – for that I am honored.
I am so glad that you fundraising is going so well. Keep up the amazing work with that! I returned to working out a little in the past few weeks and still feel that I am slow to recover. I started a pilates class and a few hours later, still had rubberband legs and arms.
Please let me know if I can help with another post as I am doing research right now for Celiac on a part-time basis and have come across a few interesting articles that I am happy to share.
Wishing you the very best and with lots of admiration….
7/26/2016 2:24:12 PM
Hey Jess, thank you for the great update. SO glad to hear the happy ending to the breast cancer scare. Ugh, waiting for test results is so freaky. And telling us about it, is an excellent reminder to appreciate life. Sometimes with the CD and day to day stuff, I know I can develop kind of a tunnel vision in that regard. That’s also so cool that you are so close to your fundraising goal! Congratulations! In the midst of this and your marathon training and more family stuff going on, plus all the work changes, I appreciate your update. Amazing to think it is almost autumn, happy fall! I love this season.
7/26/2016 2:23:53 PM
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