I am not ok

I have written, erased, re-written, and sat with this post in my "drafts" for a while now. It is not my best writing and I didn't feel ready to post this. I didn't want to post this. It really isn't about gluten free stuff... but it is. It is about me. It is about how we silence and shun those with mental health issues - chronic and acute. 


When I was recovering from my celiac diagnosis - and yes, I just referred to the process of dealing with the diagnosis and re-figuring-out-my-life as recovery - I was depressed. The gluten-free community is really great about being supportive with recipe ideas, managing family dynamics, managing work and social parties, but the giant elephant in the room is often the mental health implications of getting glutened and dealing with the recovery process. 

So I decided to post this. I hope that it helps. I hope it helps me, and I hope it may help others who are trying to figure out how to cope and manage these days.   


I am not ok; and that is ok for now.

I woke up on Wednesdays and was crying. I didn't know what to do, but then I called someone because I knew I needed some extra help.

I am an exceptionally lucky person. Everyone I know who was at the marathon on Monday is physically ok.

I work at the site of the Boston Marathon Finish Line. I was at work on Monday when the building slightly shook, twice. We tried our best to work through a 3 hour building lock-down and get information out to friends, colleagues, and loved ones.

I have felt angry, grief, and that I didn't deserve the luck of not going outside to watch and cheer people on. I have hated the images and words of hate on Facebook and Twitter, and the false reports by the NYPost - they all feel like more pain.

I have been filled with lots of feelings about feelings. Am I suppose to feel this way? Why does this feel different than other tragedies. Why is this getting reported differently? I have felt a weird mix of guilt and bile over the fact that I know how disproportionately this is getting media attention and financial aid.

I got so angry I yelled at my computer for people telling others "don't feel fear, if you do, terrorists win". Please stop telling people how to feel.

I am scared. It is scary to ride to work on the T with armed national guards - who I am so grateful are here - but I can also be afraid and worried. I can cry for those I do not know, and it doesn't make me any less.

This past weekend was very hard. I have never been more grateful for social media - allowing for a space for people who were trapped in apartments and homes to let people know how they were doing, and for people to still feel connected.

I am so very lucky and that is why I am writing. There are a lot of us who are "very lucky" who are also hurting and feeling a lot of different feelings right now. There are people who are all over the globe who are affected by this. Please know you are not alone, and please reach out to others.

I didn't sleep much last night because I had nightmares of people being injured again - memories of Thursday night and Friday morning came to life in my dream. I know this is not ok.

Not being able to "handle" or "process" this by your self ok. But we need to process this. We need to do whatever we can to get some of this pain, sadness, fear, grief, relief, exhaustion, tension, anxiety out of our bodies. Writing, talking, crying, getting a bit of exercise, meditating, and self care are crucial right now.

I knew I wasn't ok this morning, and I called someone for help. I am not cured, I am not better, and I am still  trying to wrestle with thoughts, feelings, emotions, and images. And I know I am not alone.

And hopefully soon, cooking and baking will be back. And I am excited because tulips are blooming and it means ramps will be ready to dig up.

Resources:
For persons or family members who were injured
City of Boston has set up a special number: 617.343.1373

Resources and information for Copley/Boylston residents and business owners

Boston Acupuncture Trauma Relief

Your place of work may have an Employee Assistance Program (EAP) or OMBUDS office that can also help you access resources.

twitterings

Twitter cannot contain all of No Gluten Required. There aren't enough characters. Fret not!

Slightly less well thought out, sassy, mostly gluten-free, often micro-bursts of rage can now be found on: https://twitter.com/NoGlutenReqd

What are you favorite gf tweeters?

Peace Vigil Tonight, Boston Common

There is a peace vigil being planned for tonight on the Boston Common, 6-8pm.

Facebook invite 

The American Red Cross of MA notes the generosity of so many has them not needing additional blood right now. 

Boston Marathon Help - gluten free housing

If you know of someone stuck in or around the city, I have listed my space on the google.docs I have a place to offer.

kristina (dot) nies @ gmail (dot) com

I can accommodate 3, space does have friendly cats. I work down town at the site of the finish line, can pick up/transport.

It is listed as gluten free, but please feel free to share this widely. 

Curing Celiac Disease

A few years ago, I was in my I-am-going-to-read-every-medical-article-on-celiac-disease phase. So many articles and definitions of celiac disease are wrong or incomplete. I was really frustrated. After getting through a few studies, I realized that there is so so so much that "we" don't know about celiac disease. It was really refreshing. It made me a lot less angry at lot of people. There just isn't a ton of research on celiac disease (or wasn't 5 years ago, that is changing a bit now) and the gut is very complicated. Did you know the digestive system has its own nervous system?! Fascinating right?!

A very good friend, who is a scientist, fielded a lot of my questions. One night, in his kitchen, I was asking with all seriousness: well why can't people with autoimmune diseases just get bone marrow transplants?

This came about after a really lengthy discussion about T-cells, they are the pesky cells that make the antibodies that cause the problem for persons with celiac disease. (There are a lot of T-cells that do great things, like creating antibodies to fight infections, but the T-cells that create antibodies that "attack" gluten, cause significant damage to villi in the small intestines, plus a whole lot of other problems - over 300 symptoms have been acknowledged.)

T-cells are created in the bone marrow, and while they create the antibodies that cause damage in the small intestines, they travel throughout the body. So say you got rid of all the T-cells in your digestive tract, if there is still one in your blood stream, you still have the capability of making more T-cells, and more gluten-attacking antibodies, and continue the cycle of active celiac disease.

So this knowledge was probably the most liberating thing for me. It made me feel stronger. For me, understanding celiac disease, made me truly feel like I wasn't going nuts. It made me feel like I had a clue as to what is going on in my body. (I am going to acknowledge that this is only one way of knowing or understanding things, but it is the kind that helped me a lot.) I cannot tell you how grateful I am to have such awesome friends!

Back to the bone marrow...
After this pretty detailed explanation about how T-cells are made, how they chemically "communicate" and how they synthesize antibodies - I sort of blurted out "can I just get a bone marrow transplant?!"

I realize how ridiculous this might sound. Bone marrow transplants are very risky and only work if you basically kill all of the "bad" cells before you add in new bone marrow. That is why it is not done unless absolutely necessary as a treatment for certain cancers or blood disorders. You literally have to compromise your entire immune system, making you susceptible to a lot of things a lot worse than celiac disease - diseases and disorders that can be fatal.

My friend was very kind and let me go down this path of hypothetical bone marrow transplants and talked about how it may or may not work. It was really exciting. Not because I actually wanted the procedure, but because for the first time since being diagnosed in 2007 I felt like I had a true understanding of what was going on, and of the research that had been done so far. Super cool right?! And knowledge is a decent start towards finding a less risky option for treatment and a cure.

I bring this up because there is actual success story! Bone Marrow Transplants Appear to Cure Celiac in Two Patients. Again, these patients had a need, aside from celiac disease, for the transplant. The ability to consume gluten post-transplant, was a bonus. Hopefully this will inform more research. This is so exciting!