[40:13] TS — That’s awesome. That’s so true. There’s so much out there that points in the direction of not having hope, but you guys, you can have an awesome life. Fibromyalgia doesn’t have to be the end.

[40:29] JH — It doesn’t, and some people are fearful of being labeled. They don’t necessarily want to have that diagnosis because they don’t want to be labeled. The sooner you know what you’re working with and dealing with, the more quickly you can find the resolutions to all the different things that you’re dealing with. If your child has GI problems, there are so many things that you can try and work with and figure those things out — and better at a young age. There have actually been some studies showing that a lot of times when kids, adolescence, preteens and teens are diagnosed, they really end up almost being symptom free as they get older, because they’ve learned how to manage everything.

[41:17] TS — Like any illness, if you let things go too long, all those problems just sort of add up and compound, and you end up with more problems. If anybody listening to this is noticing anything in their child that suggests fibromyalgia, don’t hesitate to get them help. We want to get them as much help as we can early on, because that gives them the best hope for a more normal future.

[41:49] JH — That’s right. Then they feel empowered. They feel like they have some control over their lives.

[41:55] TS — As you were talking earlier about making sure as parents, leaving no stone unturned, getting yourself educated, what have been the resources that have really been helpful for you, both as Lexi’s caregiver, and also just for you personally?

[42:16] JH — Hands down, when I discovered your program, that empowered me. When I was able to join your program and get trained as an Advisor, and then I was a Coach. That was empowering for me personally, because I started understanding that there were so many things that people can do for their fibromyalgia.

[42:45] JH — Another thing that’s helped me personally is belonging to support groups. There are some support groups. For example, on Facebook there is a support group, parents of teens with chronic illness, and that has helped tremendously to realize I’m not alone out there. There are a lot of parents out there who are trying to figure out what the best thing is to do for their kids, and how to keep their kid’s spirits up, and to keep the energy going, and to keep the motivation going. That was really helpful for me.

[43:21] TS — Awesome. I do want to remind you guys, we will have links to these things in the show notes. For today’s show, you want to go to FibromyalgiaPodcast.com/25, this is our 25th episode, we will have a link to that Facebook group. Jara, if you want to send that to me, I can link to that. We’ll also have links to the other episodes that we’ve talked about, and how you can connect with Jara if you want some help with some of those other things we’ve discussed. Any other books or resources that have been particularly helpful for you guys?

[44:00] JH — There’ve been some other things. Actually, we met with Dr. Congdon, and Lexi was going to start the guaifenesin protocol. I’ve worked with some people who are on the guaifenesin protocol. It’s really awesome when it works. It works, and she’s had so much success with that. We ultimately didn’t do that for my daughter, because about the time we were going to start her on the guaifenesin protocol, she was diagnosed with a connective tissue disorder, and Dr. Congdon said, “There’s just too much going on right now. Let’s put this on hold.” Now we don’t really need to do the guaifenesin protocol because what we are doing, Lexi is doing great. She’s managing. That was super helpful, reading about the guaifenesin protocol and meeting Dr. Congdon.

[44:50] JH — We also went through EpicGenetics. We did their blood test, the FM/a blood test, because there again, you want confirmation, you want to know. For us, we needed confirmation.

[45:07] TS — I remember having conversations with you. Didn’t you get some people saying yes, she does [have fibromyalgia] and some people saying no, she doesn’t, she’s got something else? There was a lot of confusion about what is actually going on.

[45:20] JH — Precisely. Because the connective tissue disorder mirrors fibromyalgia. The thing is about the tender points — Lexi had the tender points. She had, I think, five of the 18 tender points. Lexi has a very high tolerance for pain, which is kind of weird with fibromyalgia because you’re highly sensitive to pain. She does have a high tolerance. Someone touching those tender points isn’t the same for her.

[45:51] JH — Yes, we were getting mixed diagnosis, and people weren’t sure, so we went through EpicGenetics and the FM/a blood test — at the time, they weren’t covered by insurance. I think now a lot of insurance companies are paying for that information because once again, once you have information you’re empowered, and then you quit spinning your wheels, and you quit spending money on more testing, or spending your money on treatments that really aren’t going to pertain or be useful.

[46:29] TS — Right. Yes. That’s great. We will link to all of these things in our show notes today. We will link to the FM/a Test and that fibromyalgia blood test. There are others out there as well, but we’ll link to that one. Also links to the other episodes and resources that we’ve talked about.

[46:51] TS — Now Jara, what is the best way for somebody to connect with you either for help or just a listening ear, someone who knows what they’ve gone through.

[47:05] JH — Well, I am available to be anything like that — a listening ear, if you want your teen to talk to me. Lexi would even be willing at some point, just to provide some inspiration and some hope. You can contact me at JaraHalfen.com is the link to my website.

[47:36] JH — I’m actually in the process of interviewing families about their fibromyalgia journey. If any of you are interested in talking to me a little further, I want to find out more about other families’ experiences with fibromyalgia in their teens. I’ve got a short questionnaire. It’s not a lot of time, but I’m just really interested in finding out what everybody’s experience has been. From that information, I’m hoping to figure out ways to really reach out to those teens and their families, and provide help and services and information and advocacy. You know, there are so many things that we can do together.

[48:25] TS — Yes, definitely. Yes. If you are listening and you have a child who has fibromyalgia specifically, but even if they have another chronic illness like chronic fatigue or anything like that, juvenile RA, please do reach out to Jara. She’s doing those interviews for several reasons. One, just because there is so little information out there for those kiddos with fibromyalgia, and it is sometimes a little bit different than everything we talk about with adults. There are other issues, other special circumstances we have to talk about when it comes to our kids and just getting more information.

[49:12] TS — Also figuring out what the gaps are, like who is helping you, where are you getting help and what are the areas where you still need help, so that we can maybe put some of those resources together. Jara has gone through a lot. She would love to help you with and also get help from you so that we know how to help more people.

[49:35] JH — Yes. Just let your kiddos know… (It’s mostly girls. The diagnosis for fibromyalgia for preadolescents is a mix between boys and girls, but as you start going into the later teen years, it’s mostly girls that are diagnosed.) Just know that there is hope. It’s not a death sentence. It’s not a life sentence, that life is not going to be something where you can’t flourish and do everything you want to do. You just have to figure out the different ways then to do it. There is hope.

[50:22] TS — Awesome. Well, thank you so much for being here, Jara. Everybody stay tuned. I’m going to have a few more resources for you after we wrap up our interview, and I’ll let you know some of the upcoming episodes over the next few months. We’ve got a lot of really great things coming up, so stay tuned for just a few more minutes. We’ll have that for you.

[50:43] JH — Thank you, Tami.

[50:46] TS — Thanks so much for listening in to my interview with Jara. I’m going to give you all of the links and resources that we mentioned in today’s episode. Remember you can go to FibromyalgiaPodcast.com/25 to see all of the links, notes, and resources for today’s episode.

[51:09] Episode 16 is the episode where I interviewed Dr. Melissa Congdon on juvenile fibromyalgia. In that episode, we talk about how fibromyalgia is diagnosed in juveniles versus adults. She talks about how to look for signs and symptoms, what to look for. There are also some tools that I have created for you to help track those symptoms and the things that you’re noticing in your child. You can find all of that information at FibromyalgiaPodcast.com/16.

[51:50]  We also talked about the family medical leave act, in case you have to take time off from work to take care of your child. You can find information on that in Episode 14. In that episode, I have another of my coaches, Julie Hamilton, and she talks about using the family medical leave act for fibromyalgia. A part of that actually does cover you if you have to take time off work to take care of a child who is sick. Make sure you listen to that episode as well. That’s Episode 14, FibromyalgiaPodcast.com/14.

[52:34] In Episode 15, Julie and I talk about requesting special work accommodations. This is really more about you, if you have fibromyalgia. In listening to this episode, if you thought, “Oh gosh, it would be awesome if I could have something like that for me at work.” That is Episode 15.

[52:56] Episode 15 might also give you some ideas for things that you might be able to request as accommodations for your child. With fibromyalgia bodies, there are a lot of similarities there. There may be some things in that episode that give you ideas for ways that you could adjust your child’s “work environment”, that’s Episode 15. FibromyalgiaPodcast.com/15.

[53:27]  We also talked about the 504 form and the IEP, the individual education plan. We will have those links on the show notes page. Unfortunately, I don’t have them to read to you right now. Jara has to look up that webpage for me, but we will have it in the show notes. Go to today’s page, FibromyalgiaPodcast.com/25, and we will have that link there for you.

Of course, you can also reach out to Jara for help with this. This is part of what she does with her clients, is help them fill out these forms, and know who to go to, and figure out what kind of accommodations to ask for, for your child. You can reach Jara at JaraHalfen.com. By the way, that web address is slightly different than the one that she gave you in the episode. That is a correction. You know how it is sometimes when you are being interviewed and are a little bit nervous and a slip of the tongue. Use that website to connect with her.

​[54:44]  ​If you are interested in working with Jara or having Jara work with your child, or if you’re just looking for a coach in general, maybe for some of that kind of help that Jara talked about, you can request to be matched with one of our coaches.

​[55:06]  ​We have all kinds of coaches all over the world, lots of different personalities, backgrounds, lifestyle, education, everything from coaches who were nurses or parents or with fibromyalgia themselves. We have lots of different kinds of coaches, and we would love to match you up with someone who can help you with your situation. You can do that at FibromyalgiaPodcast.com. Just look under the contact menu, and you’ll see the Find a Coach option. You can fill that form out, and we would love to match you up with someone who could help you, and you’ll find that out there.

​[55:56]  ​We also mentioned the blood test for fibromyalgia, the FM/a Test, and you will actually find that online as well. We’ll have that link for you in the show notes.

​[56:11]  ​We also talked about the guaifenesin protocol, which is something that Dr. Congdon does and mentions in her interview. There is a lot of information on Dr. Congdon’s website. We will link to her website as well. You can connect with her for additional information.

​[56:33] All right. If there are any other things that you guys are looking for in regards to this episode, we would love it if you would just reach out to us. You can connect with me, or you can connect with Jara. She is interviewing families who have children with fibromyalgia, to see what kind of resources are needed, so that we can help provide that and fill in those gaps for some of those things you might be missing. Please do reach out to us. You can do that at FibromyalgiaPodcast.com under the Contact menu, or you can reach out to Jara through her website.

​[57:13] I also want to let you know what’s coming up [in future episodes].

​[57:16] The next episode will come out on Christmas Eve. Yes, we will have an episode on Christmas Eve, and we are going to be talking about faith and fibromyalgia. When you are diagnosed with something like fibromyalgia, it can really be challenging to a lot of things. It can challenge your identity. It can challenge your relationships, it can challenge your ability to work. Of course, it can also challenge your faith.

Whatever your faith might be, what your beliefs might be, believing in something bigger than you, that can be challenged when you are diagnosed with something like fibromyalgia. That is what we’re going to be talking about in our next episode. I, of course, will be speaking from my background, my Christian background, but I do believe that there will be a lot of things in our next episode that will speak to a lot of you.

​[58:28] So much of our identity is tied up with who we are and what we can do, how we practice our faith, what we may or may not be able to do any longer. The world is very centered around people who can do things more than it is centered around people who can’t do things. That applies even to the way that we practice our faith, in our churches, our synagogues. We are going to talk about that in our next episode.

​[58:59] In future episodes, after the first of the year, we’re going to be talking about fun New Year’s things, like building new healthy habits, breaking old bad habits, setting goals, New Year’s resolutions. All of that kind of stuff is going to be coming your way in January.

​[59:18] We’re even going to be talking about how to exercise with fibromyalgia. Yes, there is a right and a wrong way to do that, and most of you have probably never been taught the correct way. Which is why when I say the word exercise, you probably stopped the podcast right there. We’re going to be talking about that anyway, to give you guys the tools to be able to do that effectively, if that is something that you’re interested in.

​[59:48] We also are going to have our next Ask the Coach coming up in just a few episodes, and I would love to get your feedback on what questions you would like me to answer as part of that Ask the Coach episode. I do choose that based on what I receive from people. Don’t wait for someone else to send in their suggestions, because I do look at what suggestions get the most votes. Be sure and send in your thoughts and your questions as well.

​[01:00:22] ​With that, I’m going to go ahead and wrap it up for today. We’ll see you guys back here in a couple of weeks as we talk about faith and fibromyalgia. Have a good couple of weeks. You guys. Bye!