Calling all MastAttackers

For reasons I would rather not get into, the past few weeks have been very stressful. On top of this, summer is always hard for me because of the heat. I have to use my available resources to first keep up with work and other responsibilities with the blog coming after.

The silver lining to this situation is that it has forced me to realize that I absolutely cannot keep doing this the way I have been doing. It is not safe for me. It has forced me to think about what tasks can be delegated and the best way to educate mast cell patients and providers as a group to lessen the burden on me and others like me in various organizations.

I’m taking a few weeks off to come back in August with a stronger team so that MastAttack is not synonymous with me. I will continue to produce content, answer questions and interact with patients, but additional help in some other areas will make me better able to serve this community.

A number of people have reached out to ask how they can help. I have the following needs:

• Technical blog posts need to be edited to include bulleted summaries without jargon at the top of each post.

• Frequently asked questions need to be compiled with answers and posted on the blog as a page. These answers are assuredly on the blog already, it’s a matter of putting it all in one place.

• Older posts needs to be curated to ensure that the information there is still accurate. Wherever possible, any information from older posts that is still relevant should be incorporated into newer posts and the older posts removed.

• Redundant posts need to be combined and organized.

• Any research for requested posts would be really helpful. You do not need to have a science background for this, but I need to feel confident that you have a reasonable understanding of mast cell biology.

• Research or posts on conditions that commonly occur with mast cell disease. Again, you do not need to have a science background for this, but I need to feel confident that you have a reasonable understanding of mast cell biology.

• Questions for me need to be prioritized. For questions that have already been answered somewhere on the blog, the person should be directed to the appropriate post.

• Suggested reading lists need to be generated for the blog to ensure that the reader reads posts that describe more entry level concepts prior to reading posts that describe more complex concepts.

• Messages and emails describing complex cases asking for my opinion need to be distilled down into shorter, more digestible information. The biggest reason it takes me forever to respond to emails like this is that I have to absorb four pages of information and then think about it before I respond. I have to think about exactly how I want to do this because I understand patients may be uncomfortable with someone else reading these messages, so don’t worry about it yet. I think I could set up a separate email for that or maybe a form that shows how to structure information.

• The Master Index and subpages need to be updated as newer posts are published.

• Monthly summaries need to be updated as newer posts are published.
If you are interested in helping, or have other suggestions for how to improve efficiency, please email me at Lisa.Klimas@gmail.com. I’m really excited about the future possibilities for MastAttack.

Thanks!
Lisa

12 Responses

  1. Amanda July 13, 2016 / 8:21 pm

    Thank you for everything you do! Your information has helped me and my children! If I was well enough I would offer to help. Maybe in the future I will be able to. I hope you find people that can and take care of yourself! Just wanted to say thank you!

  2. Ann Jordan July 13, 2016 / 8:34 pm

    Thank you, Lisa, for the monumental task you have already accomplished. Bless you.

  3. Tracy July 13, 2016 / 8:48 pm

    I am new but don’t mind reviewing the entire blog/FB/ and anything else you want to send me to establish a Q & A referral sheet for common questions. Since I am new, it will help me tremendously to review this material myself. I can forward the final document to you for review, I can make any corrections before you post it.

  4. Jane Yount July 13, 2016 / 8:57 pm

    I can’t help because I don’t have the background but I am glad you are doing this, expanding so you don’t have to bear all the responsibility yourself. Much too much for one person. Thank you for all you have done and please don’t stress. Wait for just the right person or persons to come along.

  5. Yvonne July 13, 2016 / 9:48 pm

    I can’t imagine a young person keeping up a busy life with multiple conditions that include mast cell disease. I’m old and am on cruise-control, which works pretty well.

    Catch a reprieve, if you can, and best thoughts for finding helpers for your blog. You are doing a tremendous public service.

  6. Kay Boling July 13, 2016 / 10:50 pm

    Sending you a gentle hug and a cocoon of warm, happy, appreciation!
    Thank you for being such a bright light in this scary tunnel.
    Get some well-deserved rest, dear friend who I greatly value, even to hough we have never met.
    I will look forward to your return, but only after you feel up to it again.
    If you ever travel to Florida, or would just like some R&R sometime, I would welcome you in a heartbeat.
    Be well,
    Kay Boling

  7. Mark July 14, 2016 / 2:49 am

    Most thoughtful, ambitious, Lisa. I’ve written various webpages, or what could be and would be happy to have these posted here as well.

    Unfortunately, while I haven’t seen you attack me, I do not feel safe posting here without confidence I can fairly defend myself against personal slander devoid of medical content, pointing to nothing I posted that was inappropriate, Nor any indication how I could convey the questions, comments bearing on the medical matters I’ve tried to address. Also, so far as I know, I’ve failed to spark the productive discussion I’d hoped, expected would ensue. Nor have I encountered any involving others. Most material I haven’t managed to read, despite my interest. I am a real person, not a rock, Nor a masochist offering myself to be battered as a punching bag. Same with many leading doctors genuinely respecting sound science, responsible medicine — looking heroically to do right by us. We need assurance that productive, robust, penetrating, good faith discussion will be welcome, embraced.

    • Lisa Klimas July 14, 2016 / 6:20 am

      Hi, Mark,

      I really don’t censor comments and people don’t always agree with you online. It sucks being attacked. I know a little about that.

      I’m happy to address all of your points in a follow up post when I return in earnest in August. It has been a hell of a week.

  8. Autumn Austin July 14, 2016 / 7:42 am

    Dear Lisa, I may not know you as well as some of the others, but I would like to thank you for all that you have done to help others. I agree, first and foremost we must take care of ourselves. I support you 100%! I wish I could commit to helping in some way but I’m about to be starting a new chemo for my MCAS and it has all the bad side effects. If there is something that I can do on a better day it would be writing a ‘blog’ for the site. I just can’t do it right now. I wish you well as you put your energy into yourself. You are a true blessing to the mast cell community!

  9. Becky July 14, 2016 / 9:17 am

    I may be able to help sort through e-mails or compile a simplified, standard set of questions that would streamline the process a bit for you. If no one else who’s better qualified steps up, I’m certainly game.

  10. Cindy Maak July 14, 2016 / 10:25 am

    Thank you for all you’ve done for us. I will miss your witty stories and all your information. Take Care of yourself, and I agree, Summer heat sucks!

  11. Sue Hargrave July 15, 2016 / 12:55 pm

    Lisa, Kudos to you for taking care of yourself. Living with a disease and working can be tricky business. Best wishes as you transition to a different way of providing this blog. You are a rock star!

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