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Join us for an interview with Emma-Louise and discover how she has been able to manage through her journey with Managing Extreme Anxiety, Depression, PTSD, and Fibromyalgia. This is Emma-Louise’s Healthful StoryTM. Please note that the video may only play in landscape mode on a mobile phone.

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If you’d like to share your own Healthful JourneyTM, you can upload video here or e-mail contact@healthfulheroes.com to arrange a live half-hour interview.

>>>> Please consider supporting our Healthful MissionTM to share individual health journeys to inform, empower, and inspire by clicking here. <<<<

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Navigate Emma-Louise’s Journey:

00:45 I suffer from fibromyalgia, chronic fatigue, depressive disorder, emotional dysregulation (multiple personalities) though it’s not actually called that anymore, extreme anxiety, PTSD, Agoraphobia (a fear of large spaces), anemia, and fibromyalgia
03:27 It all links together
04:03 Basically your brain misinterprets signals and so my muscles spasms cause me a lot of pain
06:06 I was diagnosed when I was 12 but obviously it would have started before that because everything came out when I was 12
06:42 With abuse, it’s very easy to blame yourself or it’s very easy to be manipulated into thinking this is normal or you can’t talk about this because it’s a secret
07:49 I was sent to a school counselor and my mental health kept snowballing until I tried to commit suicide
08:09 I’ve tried multiple times but I’ve only been hospitalized twice
08:51 I finally was sent to see an actual therapist and I was able to speak with him and cognitive behavioral therapy so CBT helped
10:02 It took me again trying to kill myself when I was 14 for them to try medication
11:06 At a young age and being female, a lot of things will be passed off as “she’s emotional or she’s overreacting”
12:20 I was finally diagnosed with PTSD and finally given the correct medication and it wasn’t easy but it helped and I finished my studies
14:03 I tried so many medications until I finally found one, peroxetine, that worked for me
14:50 Having someone to talk to is very cathartic
17:01 It took me a while to admit that sometimes I hear voices
17:41 There’s nothing bad with being schizophrenic. It’s very misunderstood
19:34 It takes a lot of effort and it will break you down the amount of times I just cried because people wouldn’t take me seriously
22:49 I fell in love with drama because it gave me that confidence
23:00 But I started to realize I’m in a lot of pain
23:12 Fibromyalgia feels a lot like the flu (dry mouth, bones will ache, your muscles will hurt)
25:08 I thought it was anemia
25:52 When you go to university and obviously you can drink at the age of 18 here in the UK and people want to go party I would say I’m too tired to do that, if I dance all night I won’t0 be okay for three days
26:13 And then someone said that’s not normal I have anemia, I take my blood irons, and I’m fine
26:37 That was the moment I thought this isn’t normal
27:58 It took me two and a half years of me going back and forth to the doctors explaining my pain symptoms
29:07 I’m not losing that fight to depression because I’m tired because of my chronic fatigue and my fibro
32:16 Because of my many health issues I started to wonder if I am a hypochondriac
38:00 It was when I had non-epileptic seizures that I had my CAT scan and my MRI and it was just after they thought I had fibromyalgia but they weren’t entirely sure
41:09 I’d seen so many doctors I didn’t think he was going to believe me
41:24 I was really surprised but he was just so helpful, so lovely and he just wanted to sort this out
42:14 A lot of people describe fibromyalgia as extreme flu pain
43:07 My muscles will contract and just twitch a lot so they’re being overused but not in the way they should be so they’re not actually gaining any muscle they’re just being overused so it hurts
45:04 I bought a hot tub because hot water helps so much
45:50 Yoga really helps
48:47 I take a lot of medication – a muscle relaxant helps everything
49:07 I take Diazepam which is an addictive substance
50:07 I also take amitriptyline which is another muscle relaxant
54:10 You should know your own limitations
54:13 Don’t push yourself to the point you’re going to hurt yourself
55:58 Taking care of yourself really is important
56:31 You can do little bits of what you like or you can find new ways around it
58:19 I got confident through drama which is why i love it
60:24 I want to help others. I want to make people realize that their voices are heard, that their opinions are valid
61:58 You can push through anything and life seriously does suck. There’ll be moments in your life where you’re just sort of thinking what’s the point?
62:20 But I truly believe everyone has a form of happiness to find and I’m still working on mine like I’m very happy now but I know I can be happier. I know I can find something more meaningful in my life or I know I can help more people
62:55 If you’re struggling in life, find something you love and do it and you’ll be happy
63:02 As long as you have something that makes you smile even if it’s just once a week even if it’s just your dog to cuddle, even it’s just that one friend that sometimes texts you, you’re still smiling
63:33 I can still be sad
63:38 Realizing that your emotions are valid but that doesn’t mean you have to listen to them

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Join us for an interview with Christina and discover how she has been able to manage through her journey with Lupus. This is Christina’s Healthful StoryTM. Please note that the video may only play in landscape mode on a mobile phone.

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If you’d like to share your own Healthful JourneyTM, you can upload video here or e-mail contact@healthfulheroes.com to arrange a live half-hour interview.

>>>> Please consider supporting our Healthful MissionTM to share individual health journeys to inform, empower, and inspire by clicking here. <<<<

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Navigate Christina’s Journey:

My name is Christina. I am 32 years old living in Las Vegas. I have a 12-year-old son with Down Syndrome. I was diagnosed with Lupus two years ago. It took them 7 years to diagnose me.
 
In 2013, I had really bad stomach pains. I couldn’t eat. I couldn’t sit up. I couldn’t sleep. I couldn’t lift anything. I went to the ER. Christina’s gallbladder was leaking bile and so she had her gallbladder removed.
 
With pancreatitis, it happens because of binge drinking or cholesterol. Lipase helps regulate digestion. If it is elevated, it eats up your organs. It took a week to get my gallbladder removed. It was Thanksgiving of 2013. Thanksgiving dinner was beef broth and graham crackers that year. 01:35 There were two years where my stomach wasn’t in a lot of pain. In 2016, I was getting pancreatitis a couple times a month. My joints would swell up. I couldn’t walk easily. It would progressively get worse and worse from there. The stomach pain was a 9 out of 10.
 
The body pain was a 7. The two combined was too much to handle at times. At the ER, they wouldn’t prescribe pain killers. They would think I was drug-seeking. I take care of dementia and Alzheimer’s patients.
 
I would have to bring in my dad or male friend into appointments for me to be taken seriously. I had these problems as a kid. These pains were passed off as growing pains. Normal growing pains are legs, back, and shoulders. Not wrists and ankles. You doubt yourself and wonder if you are doing this for attention. The inflammation marker would come back normal, however the antibody test would always come back high.
 
So after 7 tests, the GI doctor told me to see your regular physician. My PCP indicated it was an immune disorder. The GI doctor told me I would have pancreatitis for life and I’d just have to deal with it.
 
I thought maybe there is no actual reason – maybe it is all in my head. Having my son to take care of, I can’t just live in pain all the time. You have to listen to your body when you can’t power through anymore. That’s when you really have to listen.
 
The rheumatologist said that I didn’t have lupus because the inflammation marker wasn’t high. My inflammation marker was not high. How do you explain a doctor specializing in lupus, that they are not empathetic to the journey? I will have said in my appointment that I don’t think you are listening. Certain vegetables may trigger a flare up.
 
Your whole body starts to be in pain. I can’t eat onions anymore. I can’t eat eggplant. They said that is because of pancreatitis. You want your doctor to care and it doesn’t feel like they do.
 
So you finally got the lupus diagnosis. I was told that you have to change your diet, lifestyle, and job. That’s what the doctor told me. I am allergic to a lot of different medications. The normal treatment for lupus are steroids and ibuprofen, however I couldn’t take those.
 
I went with an alternative treatment called plaquenil. You may never be able to run a marathon. I now see the benefits of the plaquenil.
 
It does help. It is a little harder on the body than the NSAIDs. It is a little harder on your stomach. I will try anything safe that will work to get some kind of relief to feel like a human being again. I missed working. It was a really tough eight months without treatment. I managed through the pandemic over Zoom. I tried to do a lot of self-care.
 
I tried to get a good routine going. I would try to talk to anyone who would listen. Coffee helps with headaches – it works for me every time. I am lucky to have a really good support system that will constantly remind me to take a step back. I wasn’t really willing to admit that I needed help. I had  to remind myself to take a break. You have to be very honest and open with your village so that they can help you. If we are open and we share, we might get some information that will help.

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*Betsy's Healthful Journey™ through Stage IV Cholangiocarcinoma

*Betsy's Healthful Journey™ with Cholangiocarcinoma

Join us for an interview with Betsy and discover how he has been able to manage through her journey after diagnosis with Stage IV cholangiocarcinoma. This is Betsy’s Healthful Story™. Please note that the video may only play in landscape mode on a mobile phone.

Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

aneurysm
 
6:51 I was like the only patient in that wing of the hospital but I was pretty calm and they did a brain CT scan and they came back to me and they said we found something and those are the words I’ll never forget hearing we found something,,, some kind of mass… they decided to set me up with a neurosurgeon and send me home
8:33 It felt a lot like I pulled a muscle or something in my lower back like – by chronic do you mean constant it was just always always there… So a few weeks of consistent not severe but concerning back pain

Diagnosis

9:47 So I wouldn’t say the weight loss was unintentional but yeah it was certainly enough that a lot of people noticed and commented on it and you know some even you know thought it was too much weight but I was happy. I felt confident I felt like I looked good you know this was yeah how much weight had you lost over what period of time maybe 25 or 30 pounds over six months so not a huge amount

"The rug's been pulled out from under you and this has happened and what else is going to happen and you you're almost looking over your shoulder and I hadn't worked for a while and I felt like I had been in that cycle and getting back out there transitioning to working and not being all about appointments I gotta get here and do this"
Betsy

Medicine moving Quickly, Chemo the First Choice

Brain metastasis and FOLFOX Chemo
Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

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Our mission is simple: to respectfully and accurately chronicle indivdiuals journeys through illness to inform, empower, and inspire each of us on our journeys to better health. Our voices, together, can make a difference for each of us, and for each other. Thank you.

Our mission is simple: to respectfully and accurately chronicle indivdiuals journeys through illness to inform, empower, and inspire each of us on our journeys to better health. Our voices, together, can make a difference for each of us, and for each other. Thank you.

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