IID Conference, Part 1

IID Conference ,Part 2

Hello, lovelies. I am a few days late for my 40th month of TSW. I can’t believe I’m writing that number. I remember thinking about when I thought 1 year would have been long enough. Now I am close to 3.5 years. I still get that question every so often: “Do you think it’s just eczema now?” No, absolutely not. My body is still fighting off what the steroids have damaged. My eczema was never this bad, and I am still trying to unfold the mysteries of my inner mechanics that steroids have destroyed or altered. I sincerely look forward to the day that I don’t have to deal with a face, neck, and arms that are constantly aggravated in some way, shape, or form, as well as balanced hormones and regulatory deficiencies.

This past month was a bit draining. I’ve been working on the documentary for so long. There have been a lot of different events happening this month and I honestly am exhausted. Balancing “normal life” with documentary/TSW life took the better of me. I had to put the documentary editing aside these past 3 weeks. I was still researching and doing work for the documentary, but I didn’t want to work on the documentary editing process when my anxiety had been so high. Four days ago I had a massive anxiety attack and it threw my skin into a frenzy. I’m trying to listen to my body and take it easy for a bit.

I did buy some CBD oil. I thought it might help, but I don’t think it’s doing anything for me. What I need is help refocusing my energy from anxiety to relief. Stretching does that somewhat. I don’t wish to take pills for that. I also gave in last month and bought Anthony William’s second book (The Medical Medium). I have been juicing celery in the morning, drinking over 16oz of lemon water, and have been trying to eat as raw as possible. With all the events I’ve been attending and helping with, it’s not that simple, but I do hope to try a 28 day raw diet from mid June to mid July. I may be taking a cruise that second week of July so my detox may not make it all the way until mid July. We shall see.

This summer I will not be working — not at a conventional job. I was going to try and find a job for financial purposes, but I need this time to focus on documentary work. I didn’t want to work at the middle/high school I’ve been working at next year, but it looks like year 3 of working there will commence at the end of August. Not that the school or people are unbearable (I actually get on well with a lot of people there), I just didn’t want to be stuck in my hometown another year. TSW has really put my life on hold, especially the documentary. I want it to be absolutely perfect in the sense that it is tastefully and professionally representing our community. That takes precision and CONSTANT updating. Taking this summer to focus solely on it will be the best for the project’s success.

One big thing I did with ITSAN in mid May was attend the IID Conference in Orlando, Florida. It stands for International Investigative Dermatology. Thousands of people were there! I did two write ups (found at the top) showcasing what I did and learned there (along with Kelly Barta, ITSAN’s President). I am not affiliated with or on the board of ITSAN, but I love working beside them for the same cause. I am so proud of the strides they are making recently to connect with doctors and legislators. I know I am fundraising right now for the documentary (almost at the halfway mark to the 5k I need!), but ITSAN also needs donations to keep the non-profit alive. Their work is super important and I would not be able to make this documentary as great as it can be without them. They are such a hub for encouragement and further connection with the medical world.

As far as my personal life with TSW, I will never lose hope. Sanity maybe (jk… but maybeeee…) but I believe in all the work that is being done to put this on the map. I will always advocate that the emotional aspect of this is likely more damaging than the physical. The physical can be tremendously painful and difficult depending in the stage you are at (some symptoms are worse than others), but psychologically, ANY long-term aspect of TSW is CRUSHING. I’ve been divorced for over a year now and I still lose sleep over it; I still look at myself in the mirror and don’t like anything I see; I still cry on bad days where I feel alone or like I am unworthy of any type of love; I still close myself off to any ounce of an actual love life because I don’t want to hold someone else back from the healthy life they could lead without having to deal with a sick person; I still lose motivation on that path of self love. THIS is all part of TSW — not just skin issues. It is why I fight for myself and the community. This preventable condition takes away jobs, love, family, opportunity, trust in the medical community, self-worth, and most of all, time. This condition shouldn’t even exist, and I hope it can be laid to rest with the rest of the dinosaurs in the ground. #fossilization

However, the man upstairs doesn’t just throw you bad without giving you the chance to find the good. Everything that happens to us gives us choices and allows us to transform into the person we want to be, or can be. I have met SO MANY incredible people through this journey. It has given me compassion that I would never have felt without suffering. I have arms that want to embrace every broken heart, a mind that continues to fight for the underdog, and a heart that struggles from bursting when I’m able to touch lives and make a difference. I may not be where I wish to be, but I will incessantly reach for the positive instead of the negative. Depression is a black whole, and even though I have stared down at it and been invited to a few pity-parties, it’s never where any of us wish to end up. It’s a shackle. I know so many who are rendered hopeless trying to fight depression through this — and I wish my arms were long enough to reach you. I wish I could constantly remind sufferers everyday how loved they are and how genuinely strong they are.

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Here are some pictures of my lovely skin…

 

 

 

 

 

 

The person above is also the same person as below

 

You never know the battles people are facing. Help them win their war using kindness and a perpetual understanding that we are all facing demons that sometimes can’t be fought off on our own. I love every face that accompanies mine in these photos. These people (amongst many others) remind me how lucky I am to be alive despite whatever health struggle I face. And I hope I can always be there for them when they are in need.

Keep fighting, loves. Persevere until the finish line. xx

Love, B. R. Banos