I kind of can’t believe I have to write this post

Hi, everyone –

I found myself in a really strange situation this week and feel like I need to say something.

I write this blog both as therapy for myself and in an effort to help patients with mast cell disease and other conditions.  The details that I omit are sometimes left out for privacy and are sometimes left out for safety.

Some of the drugs mast cell patients take to manage their disease can be abused, including IV Benadryl.  While I realize that the majority of people who read this blog and take IV Benadryl use this medication responsibility according to their doctor’s instructions, the fact is that this is the internet and I don’t really “know” most of my readers.

I do not and will not discuss things like exactly how I get various medications that can be abused because that could endanger me.  If I tell you that a line of questioning makes me uncomfortable and you continue to press me, I will never interact with you again.  Period.

I have made a choice to share my life but that choice does not extend to minutiae regarding my treatments that could affect my personal safety.

Thanks,

Lisa

21 Responses

  1. Jennifer McCoy April 7, 2016 / 9:27 am

    Indeed! The fact that you have to explain yourself to such a degree is exactly that. BS. Standing with you in support, as always.

  2. Kathy Gallery April 7, 2016 / 9:32 am

    Egad!!! Even CREEPS should have better boundaries!! Sending my support for ALL the Good you share with us.

  3. Jane Yount April 7, 2016 / 9:33 am

    You are incredibly helpful, so knowledgeable. You have also been very candid, all to help others. We are all entitled to boundaries. It’s a shame that evidently some people feel that you should have zero boundaries. Thank you for all that you have done for the community.

  4. Tara April 7, 2016 / 9:39 am

    I’m so sorry you had to write this. That’s super upsetting. On a super side note- have you ever thought of putting your exceptional compilation of posts into a masto book? You would (by far) have the most comprehensive guide/information on the market. I would be the first to buy it. I really appreciate the time and detail you put into all of your research. Thank you for helping me understand this disease.

    • Lisa Klimas April 7, 2016 / 9:58 am

      Hi, Tara,

      Thanks for your kind words. I have written a textbook on mast cell disease for patients that is in the editing/revising process. I will let everyone know when it is completed.

      Thanks!
      Lisa

      • Tara April 7, 2016 / 10:08 am

        That is AMAZING! I can’t wait!

      • Rebecca Malin April 8, 2016 / 7:33 am

        Yay! I’m so excited now!

      • Rebecca Malin April 8, 2016 / 7:36 am

        I can’t believe that anyone had the gall to ask you such personal information. It’s a sad world.

  5. Cindy April 7, 2016 / 9:45 am

    Lisa, Your articles have been a wellspring of knowledge and often just the comfort that another person out there gets this often bewildering disease. I am sorry that there are those who would try to take advantage for their own misuse, and good for you for standing up for your boundaries and safety. Just wanted you to know that you have lots of support from those us of that you help!

  6. Becky April 7, 2016 / 10:18 am

    I have found your website and the information you provide so helpful since I became ill. You are entitled to define your own terms for your blog and people should respect that. I’m sorry to say that I have seen individuals behave in very disrespectful ways sometimes on forums etc, so I can well believe that this can happen. As you say, you don’t really know who your talking to and you have the right to protect yourself. Thank you again for all your work.

  7. Linda April 7, 2016 / 10:44 am

    Lisa, well written, and I agree with you. Thanks for all you do.

  8. Kim April 7, 2016 / 12:30 pm

    Dear Lisa
    Thank you for your brilliant insightful blog. I’m so sorry that your postings are being abided. Linking arms with you in support!
    All the best,
    Kim X

  9. Karen Neill April 7, 2016 / 1:51 pm

    Wow, Lisa. I’m surprised at how easily people cross boundaries online, and say things that they would never say in person. Do what you need to do to keep you safe. Simply cut off anybody who is rude, derogatory, or clearly stirring up trouble.
    Take care- remember that recovering from a course of antibiotics alone requires several weeks. Take good care of yourself.

  10. Lordy April 7, 2016 / 2:02 pm

    So sorry you have to face these issues.
    Just wanted to thank you for all your work on this blog. You are incredible. I don’t know how you manage to be so well informed, inform others and manage mast cells simultaneously.
    Thank you so very much.

  11. Heather April 7, 2016 / 2:42 pm

    Wow. I can’t believe you have to write that either. Bless you. I’m very grateful for your blog. xx

  12. Judie thatcher April 7, 2016 / 5:02 pm

    As always I praise all you do and share with us. I can’t wait for your book, it will be an excellent resource.
    Thanks again for all you do!!!!!

  13. Angelica Heavner April 7, 2016 / 8:37 pm

    The fact this is necessary is ridiculous. I don’t blame you in the least. Discussing where you or anyone gets their meds are their’s and their doctors business no one else. My only question is how much stronger is it? I am on 3 different allergy meds daily including benadryl. They barely keep me covered most of the time. If you don’t want to answer I understand completely. Good luck.

  14. Susan April 7, 2016 / 9:54 pm

    You are amazing. I am “new” at this disease that I have had a very long time. A protozoal infection made it rear it’s ugly head and then I got a concussion. It has been so very hard. I wrote to you once and you responded within two days. It is a great comfort to know you are “around”. I am to have four teeth pulled and I really do not know if I can do it….Take care.

  15. Tara S April 8, 2016 / 12:33 pm

    I think that you are amazing, and you don’t owe anyone a thing! There are very few strong women out there for those of us with Mast Cell problems to look to. I am very recently diagnosed with Systemic Mastocytosis. You make it seem just a bit less scary and give me hope. My sincerest thanks!

  16. Deborah Ewing April 14, 2016 / 1:32 pm

    Lisa
    I love your site, I share it out loud with my husband who is amazed by how many issues you help people understand … We have been living with systemic mastocytosis for 12 years . Your blog is so helpful and we are grateful for it

    • Lisa Klimas April 14, 2016 / 9:50 pm

      Thanks!

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