Sjogren's Strong

Introduction

Treatment Devices

What do you do when a 4 Thousand dollar device falls in your lap? Lupe stuck her hand in it!
The Avacen. We are talking about our experience with it.

Treatment Devices

What do you do when a 4 Thousand dollar device falls in your lap? Lupe stuck her hand in it!

The Avacen. We are talking about our experience with it.

Welcome to another episode of Sjogren’s Strong.

[00:00:06] Brian: [00:00:06] This is Brian.

[00:00:07] Lupe: [00:00:07] And this is Lupe.

[00:00:08] Brian: [00:00:08] And this is your every other weekly podcast. You see what I did there?

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[00:00:12] Lupe: [00:00:12] That’s sounded of weird.

[00:00:14] Brian: [00:00:14] Discussing how to live an active and healthy lifestyle despite a diagnosis of Sjogren’s.

[00:00:19] Lupe: [00:00:19] Hey everybody. How you doing?

[00:00:21] Brian: [00:00:21] She misses you.

[00:00:23] Lupe: [00:00:23] I sure do. Well, first of all, I wanted to say thank you to everyone who has reached out and asked how I was doing with my brain fog.

[00:00:35] And just to give you a quick update, I feel really good. Uh, I feel like my brain fog, for the most part, is gone. Uh, my mind is clear and I started using big white words, like I like to call them. Cause sometimes I can’t think of a word or you know, I’m typing an important email or something. And I tell Brian, I need your  white words, you know, cause I’m not white. So, thanks everybody for reaching out. It really means a lot to me.

[00:01:06] Brian: [00:01:06] Yeah. We kind of attribute her little funk to diet. She cleaned up the diet and her mind is back.

[00:01:13] Lupe: [00:01:13] Yes. So, like we mentioned in the last episode, I was, uh, on a frosted chocolate donut bindge.

[00:01:24]Brian: [00:01:24] And frappuccino

[00:01:24] Lupe: [00:01:24] And frappuccino bindge. And that has so much sugar. So for me, maybe not for everybody, but for me, I think my symptoms, my brain fog, pain, everything has a lot to do with how much sugar I consume. So I cut it, um, probably 95% out and I feel so awesome.

[00:01:45] Um, after we recorded, I think a couple of days later, I told Brian, Oh my God, I feel like a million bucks today. I can’t even describe it. I just, it was, I feel awesome.

[00:01:57] Brian: [00:01:57] It’s refined sugar. Because she flipped back to fruits throughout the morning and day, afternoon, which obviously has a lot of sugar, but they’re natural sugars. And she’s doing so much better. So it’s awesome to see that. And you know, this is the third or fourth time where sugar’s increased in her diet in the last few years, and the brain fog has hit with a vengeance.

[00:02:22] But, um, she’s got her faculties back. She feels like she’s performing so much better at work, not having, you know, the memory issues associated with brain fog. So it’s all good.

[00:02:33] Lupe: [00:02:33] And for me, I know better. I know what’s going to affect me in a negative way. But you know how you feel much better, so, oh, I’m just going to have one more right.

[00:02:45] I don’t want to do that because I don’t want to feel that way again. Ever again. And I know it’s going to happen, but I don’t want it to be that bad.

[00:02:52] Brian: [00:02:52] Today.

[00:02:52]Lupe: [00:02:52] Today is the day.

[00:02:55] Brian: [00:02:55] So, we’re going to talk about this machine.,afew of you have asked about lube, a, uh, put a post out across social channels of this thing sitting on her lap or their hand stuck in it.

[00:03:06] Lupe: [00:03:06] I didn’t really say what it was, so let’s explain it.

[00:03:09]Brian: [00:03:09] And we kind of, obviously, we all should be a little skeptical when it comes to treatment devices. This was a device that was introduced to me and I went, huh, Lupe, stick your hand in this thing. We were at a function and she actually tried it. I tried it, as well.

[00:03:27] For me, my shoulder does feel a little better. I don’t feel as tired, as I normally do, when I was using it consistently. Now I did not use it consistent. I used it for about three days straight.

[00:03:39] Lupe: [00:03:39] So Brian was using it and I’m like, what are you doing with it? Let me try it, right? Cause inflammation, joint pain, all that.

[00:03:48] So you put your hand like in a little plastic glove and then you stick your hand in this machine. And it, ah, you could do like 10, 15, up to a half an hour at a time, and so you stick your hand in and it.

[00:04:03] Brian: [00:04:03] What the machine does, it creates a vacuum around your hand, which compresses cells, oxygen in your blood.

[00:04:11] Your hand rests on a plate that warms up. So the theory is the vacuum minimizes the size of cells in your blood and the heat increases your circulatory system. And it gives it a boost and warms your core temperature a little bit.

[00:04:34] Now, this device, let’s just start with the name. It is called the Avecen. And it is approved by the FDA as a heat therapy device for arthritis. In the EU, it is approved for arthritis and fibromyalgia.

[00:04:53] Now, a lot of joint pain is a common complaint of Sjogren’s, so we thought we’d give it a go. Um, Nigel is the gentleman who introduced this item to us. He was kind enough to let us borrow it for a cool five days, six days.

[00:05:08] Lupe: [00:05:08] Yeah. The first time that I tried it, at our function, I think it was like 20 minutes. And I mean, I don’t know how to explain it or if it was in my head, but I just felt like my lungs open up, like I was able to breathe better. That’s the only way I know how to explain it. And then when I got home, everything was fine.

[00:05:29] And then the following day I didn’t have any joint pain. And I’m really, you know what, guys? I’m really bad at taking my meds on the weekends, you know, Monday through Friday, you know, I’m in a routine, but on the weekends I get a little lazy.

[00:05:43] But I don’t know,I think this was the weekend and I just, I didn’t have any joint pain, but most importantly, a couple of days later, what I did notice was that the inflammation in my fingers went down significantly. Because the inflammation was pretty much all the way to my fingertips, to my, to my nails. And it just started going down so much.

[00:06:06] Brian: [00:06:06] Her fingers look like puffy little sausages and like the skin was so stretched, it was white.

[00:06:11] Lupe: [00:06:11] Yeah.

[00:06:12] Brian: [00:06:12] It was kinda kinda weird looking. And when was your last treatment.

[00:06:17] Lupe: [00:06:17] Saturday.

[00:06:18]Brian: [00:06:18] Saturday. Today is Monday, so she didn’t use it at all yesterday. Our thought process is the machine’s returned and we want to go a few days without this device and see how her body reacts. Now with all of that, having been said, this is a very expensive device. You can buy a model for home use and it’s going to run you $4,000 .

[00:06:43] Lupe: [00:06:43] Too much.

[00:06:45] Brian: [00:06:45] There’s a clinical version of this device for repetitive use, to be used inside  of a wellness center or a hospital. And ah, that model is $7,000.

[00:06:59] Lupe: [00:06:59] Too much!

[00:07:00] Brian: [00:07:00] We kind of are on the fence. We feel it works. We’ve seen the results. We’ve both felt the results. However, justifying that price tag is another question. And before we really dive in to justify that price or not, we want to see how her body reacts without it.

[00:07:19] Lupe: [00:07:19] I mean, that’s an implant. You know, I might lose more teeth.

[00:07:24] Brian: [00:07:24] Back to her teeth. So in the meantime, we’re going to go three or four days without any additional treatment on her hands. But we did find a device on Amazon that doesn’t have the vacuum seal, but it does apply pressure and heat to the hand. But we’re going to give it a few days and see what her body does without the Avecen and go from there.

[00:07:50] I wanted to read a little something from the pamphlet, in regards to the Avacen. It reads, our patented Avecen treatment method continuous infusing heat into the circulatory system at a normal body temperature. The result is the body works to dissipate this unwanted heat by pumping warm blood through need the deep tissue to the heat exchange capillary network throughout the body. This increases the microvascular circulation resulting in significant benefits for arthritis and muscular relaxation.

[00:08:31] You know, I can’t say that I felt relaxed while I was doing the treatment, but Lupe would fall asleep and I’d have to turn it off and take the machine off her hand.

[00:08:41] Lupe: [00:08:41] You know what? I think? I don’t know what put me to sleep. Um, I think because it gets really hot and you know, I’m in my flannels cause you know, it’s 70 degrees here and I’m freezing at night. The plate where your hand is on  it gets really hot. So about 5-10 minutes of doing the treatment, I did fall asleep.

[00:09:01] I told Brian before I fall asleep, Brian, can you wake me up when this machine stops so I could switch hands. Because, well, that was only in the evening cause I did try it in the morning and I would do 15 minutes each hand.

[00:09:12] But in the evenings I wanted to do, a couple of times I did an hour, but it would definitely put me to sleep.

[00:09:18] Brian: [00:09:18] And on that note,there is no contraindication, you cannot really over use the machine. Some of the guidelines that were explained were, you know, 30 minutes, each hand, twice a day .30 minutes, one hand, every couple of hours, but where are your Guinea pigs?

[00:09:34] So we kind of didn’t listen to those guidelines and rocked a full flippen hour, each hand.

[00:09:40] Lupe: [00:09:40] I’m your Huckleberry. But guys, I feel that it really worked. I mean, do I want to spend that kind of money on a machine? I don’t know.

[00:09:50] You know what?

[00:09:50] Brian: [00:09:50] It’s not just that it worked or it didn’t work. Is the relief worth $4,000 plus gloves. Because the gloves you can get quite a few uses out of it. It was 50 plus, if I recall. You know, that’s the disposable item.

[00:10:04] And then the electricity to run the machine. And you know, sitting still for 15 to 30 minutes at a time, per hand, is another issue. But you know, one thing I did do. I reached out to Penny Foskeras. And for those of you who’ve been listening for awhile, she was a guest on episode 37 and she runs a wellness center here in Anaheim, California.

[00:10:28] And she’s also an author of a book called the fast foods diet cookbook. And not fast food. It’s food you can cook fast. I asked her about it and if she’d heard of it. And she goes, I have. And she has one in her wellness center. She didn’t have the time to really explain whether it was working or not, but she’s invested in one and is a rocking it there.

[00:10:54] So hopefully I’ll reach out to her. By the time the next episode comes around, I’ll be able to tell you what kind of results her patients are getting. It’s a kind of cool because she does a lot of research before she brings a modality into her clinic. You know, her having one kind of gave me a warm and fuzzy that this was a legitimate piece of equipment, which I feel it is.

[00:11:16] We watched quite a few testimonials, quite a few videos found on YouTube regarding this item. And, um, you know, there was nothing bad I could find. And you know, some of the stories were, that they told us, that I can’t confirm, uh, you know, the Navy seals in San Diego use them. Um, and not that that should be the end all, be all to make a decision.

[00:11:37] But, uh, the company is local here in the U S in San Diego. And we just kinda wanted to share this thing with you.

[00:11:44] Lupe: [00:11:44] So again, my swelling went down. You know what? It wasn’t only in my fingers. I could tell on my face. I had lunch with my mom a few days ago and she said, Oh my God, your face look so skinny and your neck look so skinny.

[00:11:57] And it was the machine. But more importantly, besides the swelling going down. My joints didn’t ache. And that’s very important to me because I mean, do I want to be on pain meds the rest of my life? No. So it did give me relief.

[00:12:12] Brian: [00:12:12] And let me read a couple of the bullet points they have in their literature.

[00:12:15] So pain treatment benefits, noninvasive drug free, easy to use, ideal for home and clinic. Single point treatment, portable. Advanced technologies are custom hand sensor, adjustable heat and time. Easy to read LCD screen, device usage monitor, patient compliance mode.

[00:12:35] You know, one of the cool things we didn’t talk about, nor did we play with, they actually have a mode called game mode. And it was designed for people with attention issues. And when you put your hand in this cuff, seals around your wrist, and if it’s in the proper position, these two led lights will line up. Game mode will do is start giving you points.

[00:12:59] So you know, you try  beat your last score and keeping,you know, perfectly still. So there’s a great seal, but if your wrist cocked or anything like that, it would, you know, let you know, look, you’re, you’re losing your seal. Um, you know, you’re not getting the best benefits out of it.

[00:13:14] But it was unique. It was very cool. Not that I’m hoping the inflammation comes back in Lupe’s hands and she starts feeling bad. But it’s going to be interesting to see what her body does, how it reacts, not using the machine for a few days.

[00:13:31] Lupe: [00:13:31] And the inflammation in my fingers didn’t go all the way down. I mean, I still have sausage fingers, but, uh, definitely noticeable to the first knuckle. If I would’ve kept using it, would the inflammation have gone all the way down. Possibly, I can’t really say. But in the meantime, uh, we did buy this gadget from Amazon, and I’m going to try it tonight.

[00:13:54] Actually, no, I don’t want to try it tonight. I take that back. Uh, I want to give it a few days, see what happens without using the Avecen and then, you know, we’ll report back.

[00:14:03] Brian: [00:14:03] So I want to give you guys their website. It’s www.avecen.com and the link will be in the show notes, but it’s AVACEN. But please do us a favor, if you’re interested in this device, use our guy. I’m going to put a Nigel’s contact information, It’ll be a phone number in the show notes. He was kind enough to lend us this $4,000 device for almost a week and  play with it. So if somebody like I’m in,  I need this thing now. You know, use Nigel. And let them know, Sjogren Strong sent you that way.

[00:14:38] Uh, we’re getting nothing from that. I just want to be kind to somebody who was kind to us. And you guys, by letting us play with this thing to talk about it. If you want to hang out for the next episode, we will update whether these things returned to Lupe’s hand and how she’s feeling next episode, which is in two weeks.

[00:14:57] Lupe: [00:14:57] And a lot of you asked me, if I also have Raynaud’s Syndrome and I have not been diagnosed with that and  I’ve seen pictures of that and I don’t think that’s what I have. I just, you know, how full body inflammation. So, to answer several of you guy,  no, I don’t think I have that. I have not been diagnosed.

[00:15:17] Brian: [00:15:17] This was just kind of a cool toy that fell in our lap and we used and we saw pretty much immediate results. But again, is it the hype, the placebo effect of a new device. Or does this thing work as well as it appears to. So stay tuned. We’ll update you.

[00:15:37] Couple of things on the calendar. We have the patient conference coming up.

[00:15:41] Lupe: [00:15:41] I dunno how many spots are available. I know, I’ve been told that it fills up really fast. So if you have not purchased tickets, please and you want to go, please go to the Sjogren’s Syndrome website and purchase your tickets and room.

[00:15:57] Brian: [00:15:57] Yup. And the 2020 National Patient Conference is in Phoenix, Arizona. It is April 3rd and 4th, which is a Friday and Saturday.

[00:16:06] Lupe: [00:16:06] And there’s also a walk on Saturday.

[00:16:08] Brian: [00:16:08] Yeah, there is a Sjogren’s walk on Saturday that we will be doing.

[00:16:11] Lupe: [00:16:11] Yes.

[00:16:12]Brian: [00:16:12] And pretty much when the conference winds down, we’re going to be returning home, but we will be there Thursday evening.

[00:16:20]Lupe: [00:16:20] And Ms Susan Barajas, she had an awesome idea. If anybody’s attending the conference and anybody wants to hook up like let’s say Thursday or whenever, you know, right before the event, uh, we could get together in the lobby of the hotel and have a little meet and greet.  Have ah, not cocktails, but water.

[00:16:43] Brian: [00:16:43] Shirley Temple with Sugar-free. Grenadines.

[00:16:46] Lupe: [00:16:46] Yeah that! So thank you Susan for the wonderful idea. We need to post about that too.

[00:16:52] Brian: [00:16:52] And we will. And if you’re not following us on social media, we are active on. Instagram and Facebook. And we do have the Living Sjogren Strong Facebook group and we had like 10 people join the group in the last week or so, which is very cool. Welcome to all of you,if you’re listening to the show. And, uh, I’m trying to do better at Twitter. I’m trying.

[00:17:13] Lupe: [00:17:13] I’m awful. And guys have to apologize because I haven’t been really active in Living Sjogren’s Strong, I need to get better at that.

[00:17:20] But you know, when I’m at work, I’m too busy. I can’t check social media. By the time I get home, I don’t know, I just fall asleep. I don’t know why. I can’t be on social media if I’m sleeping, so my apologies.

[00:17:32] Brian: [00:17:32] But, to everybody in that group, you guys are doing an awesome job at taking care of each other, we appreciate that. Your comments and helpfulness you are to others in the group isn’t falling on blind eyes. We see it and we appreciate those that are stepping up and helping each other. And that’s why we created that group. But it’s not just about us. We don’t know everything. It’s about the group collectively helping the group and you guys are rocking it. Keep it up.

[00:17:58] Lupe: [00:17:58] Absolutely. Until next time, sip constantly and stay hydrated.

Links

National Patient Conference
April 3-4, 2020
Phoenix, AZ
View the Brochure and Signup Form

Sjogren’s Syndrom Foundation “Spouses & Partners” on the 29th.
To register please call 1 (301) 530-4420 Ext. 203 or send an email to ssf@sjogrens.org

Join Our MeetUp

Chronically Active MeetUp https://www.meetup.com/Chronically-Active/
Chronically Active on Sjogren’s Strong https://sjogrensstrong.com/chronically-active/

Avacen – Nigel Dix, (714) 381-7109

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