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Brady's Blog

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Brady's Blog

If you ever wanted to start your own rosacea blog, we have the tools for you to do this. Then you can refer to your blog when posting elsewhere. It is free for members. And you can set your blog to PRIVATE so that only members you invite can view your blog. While my blog is public, so that you can see how a blog works, when setting up your own rosacea blog you simply set it to PRIVATE and only invite who you want to view your blog. 

The RRDi understands you may want your own private blog and we sponsor your having one for free! These are the steps

Need help?

For More information on how to use blogs use the Invision Community help center: 

Types of Blogs • Introduction to Blogs

Scroll below to read my first comment in my blog. You can reply to my comment if you would like to my blog post by scrolling to bottom and find the green reply button. You can have your own rosacea blog, totally free, compliments of the RRDi. Why not?  Your own rosacea blog. 

FREE!

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Brady Barrows, March 2020

So I thought I would experiment with my blog to see if anyone is interested in what I am writing. With all the coronavirus news and having to stay at home, I have been spending more time with the RRDi writing posts and trying to get donations. It is mind boggling to me that with over 1300 members no one is posting and the donations are basically nothing to speak of and I wrote this post on March 20 explaining that if the RRDi doesn't get donations we will have to dissolve the non profit for rosacea and everyone will just have to live with the NRS, the AARS, the ARSC, or the AAD as what would be left since these organizations have lots of donations. So I thought I would write about what the RRDi has accomplished:

(1) A website with a huge amount of rosacea data in the member forum. The subjects are organized in methodical categories on rosacea topics

(2) Received a total of three education grants from Galderma. Now if you want to help with this, it is a painstakingly arduous task and if you ever wonder why grant writers get paid for this, why not VOLUNTEER like two of our members did and see what hoops you have to go through to get an education grant. Right now, volunteers are basically down to two of us and I am keeping the website going and Apurva is helping. Basically we are it. There are no other volunteers, period. 

(3) We have done all this with volunteers. No one has a salary or is employed. Now check out the other non profit organizations and see if they do what they do for rosacea sufferers with only volunteers, and if you really investigate, what is the motive behind the other non profit organizations for rosacea?  

So today I discovered that the PayPal donation button wasn't working at all and discovered in the PayPal community that this is a common issue with the donate form button and changed how we use PayPal with the PayPal Giving Fund and using the PayPal.me/ link which seems to be mo'betta as they say in Hawaii. That took a while to figure out. 

RF still has some members that post, so I check out what's happening there and posted a bit over there. Yesterday I wrote an incredible post about the Risk-benefit Ratio in Rosacea Research & Development. I then checked what I did yesterday and it was a lot, adding several items to the RRDi affiliate store and calling Steve Johnson, D.O., who has served on the RRDi board of directors for many years and couldn't get ahold of him but managed to talk to his receptionist who after consulting with Steve tells me he is too busy to volunteer anymore for the RRDi and resigned so I posted all about this. If you note on Steve's website he shows he serves on our board of directors. I mentioned this to the receptionist. 

By the way, you can create your own blog and it will be controlled by you. Every member can have their own blog and it is free. Besides that, we have galleries and everyone can have their own gallery. You would think that with over 1300 members we would have at least 1300 photos of rosacea from our members but alas, the members are not only silent, they are also shy. I won't even mention clubs, but I think I just did. I still haven't figured out the difference between a blog and a club. Maybe Invision Community might explain it. 

So a while back I experimented going over to Reddit and Facebook rosacea groups and discovered that the rules over there are completely different, like PRIVATE groups, that don't allow you to refer to anything they post since it is PRIVATE and by doing this I committed an unforgivable sin. I removed the links that some were so offended I referred to about their rosacea post from our RRDi website and they treated me like I was Adolph Hitler or Judas. Also, linking to any RRDi page or post is absolutely forbidden in these private groups. 

To me, I just don't understand why rosaceans prefer Reddit or Facebook. It is so difficult to navigate through all the posts on a particular search on a topic. And what I found is that the ones in the 'private' groups are very opinionated and judgmental, and berated the RRDi, preferring the AAD or the NRS. So I decided to simply work more on the RRDi website and try to keep it going. Who knows, it may not work, and all the data on the RRDi website will be lost. Oh, I forgot, there is the wayback machine. However, sometimes even the wayback machine doesn't have what I am looking for. 

So how am I controlling my rosacea? 

I try to stay on my Rosacea Diet. However, I do cheat. I also take tons of vitamins and supplements. I take 12.5 mg of Carvedilol twice a day. I take ElaineA's salt/borax bath just about every day. If I get any pimples/pustules I dab on the ZZ cream. I have been having some issues with SD on the back part of my scalp near my neck so I sometimes use Sulfur Butter or Equate Coal Tar Shampoo, and recently I just purchased Yesto Tree Tea Scalp Treatment (too early to tell if it helps). My review of Soolantra and the ZZ cream

So did you see this one below?

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Could someone explain to me why rosaceans prefer donating to the the NRS, the AARS, the ARSC, or the AAD instead of the RRDi?  Why do they think it is ok for Sam Huff's two private corporations to receive about 60% of all the National Rosacea Society donations received over a twenty year period which amounts to over $9.8 million dollars (see spreadsheet) and they CONTINUE to donate to the NRS. Why is it that with over 1300 members in the RRDi no one posts?  No one really cares if the RRDi dissolves? Really? It is so sad. 

I have given a lot of what I do for rosacea sufferers for FREE to anyone who wants a copy of either of my two books, Rosacea 101 or the Rosacea Diet. All you do is request a copy when you join the RRDi. You at least have to join the RRDi before I give you a free copy. Is that too much to ask? Join the RRDi. All that is required is an email address. Is that too much to ask?

You may want to also read my review of Soolantra or my  ZZ cream review

In the meantime, why not read all of my recent activity in behalf of the RRDi: 

I have written some posts that I think are worthy of reading: 
 
 
 
 
 
 
I also added a number of items to the affiliate store. You can review all the recent activity with this url: 
 

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Do we have an instagram account for RRDi? I'm pretty useless with Facebook but find Instagram much easier to navigate, and I'd be happy to set one up if we don't have one yet. It would refer people to RRDi, and you are so right about Reddit. I tried answering a question for someone on Reddit who was asking for the name of a "chinese sulfur cream for rosacea" and when I named ZZ in my post, it was taken down because they said I wasn't able to discuss a product that wasn't FDA approved. ???  But Reddit is just full of pharma advertisements!

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On 4/14/2020 at 10:30 PM, RedVelvet said:

Do we have an instagram account for RRDi? I'm pretty useless with Facebook but find Instagram much easier to navigate, and I'd be happy to set one up if we don't have one yet. It would refer people to RRDi, and you are so right about Reddit. I tried answering a question for someone on Reddit who was asking for the name of a "chinese sulfur cream for rosacea" and when I named ZZ in my post, it was taken down because they said I wasn't able to discuss a product that wasn't FDA approved. ???  But Reddit is just full of pharma advertisements!

No, the RRDi doesn't have an Instagram account. I will send you a private email but if you are willing to volunteer for this that would be much appreciated. RedVelvet, why don't you create your own blog and monitor it?

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Just wanted to update what I have been using for about three weeks. I purchased Sesderma Sebovalis Facial Gel (key ingredients 8% lithium gluconate -  0.5% Piroctone olamine - 4.5% glycolic acid - Calendula extract) from the company website since it is not available at Amazon. I learned about it from Yatzil at RF [post no 1] and have heard about Piroctone Olamine which is the ingredient in this gel that I think may improve SD. I have been having what I think is SD on the back of my scalp near my neck going up the scalp to near the top of my head. I have tried over the last eight to ten months, Sulfur ButterEquate Coal Tar Shampoo, Yesto Tree Tea Scalp Treatment, Nizoral none of which worked. I tried borax and epsom salt baths. Then I went to a nurse practitioner who initially examined me and took a sample of my scalp and sent it to the lab diagnosing me with folliculitis and handing me a prescription for doxycycline 100 mg twice a day for ten days. After a few days she phoned me and said I had Staphylococcus. After the ten days I noticed that my scalp issue was a lot 'dryer' but still had it. She gave me a second Rx for Doxycycline 100 mg twice a day for another ten days. Took that and basically still had the issue but it was dryer. Went back to the nurse practitioner and told her I think it is a fungus so she prescribed Fluocinolone Acetonide Topical Oil which I tried for a couple of weeks however, it did stop the itch, but didn't do anything to relieve the fungal issue. At the same time I received Tom Busby's AquaVive which I have been using for a month as well. What I have noticed is that whatever the issue is, my guess it is a fungus, is beginning to dry up whatever it is but it still lingers. I have stopped the Fluocinolone and am continuing the borax/epsom salt baths and AquaVive. I just received my second tube of Sesderma Sebovalis Facial Gel. I also still use the ZZ cream on facial red spots and try to follow my Rosacea Diet by reducing sugar/carbohydrate as much as possible but I confess, I cheat on occasion. My scalp issue is still present and it is dryer but I still have spots that itch like crazy and won't go away. Once in a while I put the Sulfur Butter or dab a bit of the Fluocinolone on an itchy spot when it drives me crazy. The Sesderma Sebovalis isn't working either. I recently tried a tube of clotrimazole cream for a few days and it didn't do anything. I am seeing a dermatologist in Birmingham on August 19 about this. 

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Got an appointment with Dr. Julie Harper, in Birmingham in August. She happens to be the president of the AARS. Looking forward to seeing her and her insight into my back of the scalp issue. My rosacea has flared up a bit so I am using the ZZ cream on my face and forehead. I just tried some horse paste on the back of my scalp to see if ivermectin might eradicate my issue back there. I am still using Tom Busby's shampoo. I am not too impressed with the Sebovalis Facial Gel. It didn't address the back of my scalp issue. I still have it, and have backed off using the Sebovalis. 

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I just had to post this since I just came up with it. 

The rosaceans come and go, talking about their rosacea woes, some of these reports glow, while others are lows, still others crow. 

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