Interview October – Frank

Today on our very last Interview October, we’re meeting Frank Rivera. Here is his story:

Frank’s Bio…  

Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research, was a Global Genes RARE Foundation Alliance Member and was an Advocate, an ambassador for The EveryLife Foundation and a Working Group Member. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raise awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. In 2017 Frank was named Brookhaven advocate of the year. Frank also is an advocate for “Right to Try” even being interviewed by NBC Nightly News this year.

Chronic illness(es)/disabilities I have… 

Sarcoidosis, Sjogren’s Syndrome, and Parkinson’s and IBS

My symptoms/condition began… 

I was misdiagnosed in 2004, with Lung Cancer. I went through 4 years of chemotherapy and radiation while living in Florida. After the 4 years, I was told I was in remission. In 2011 after moving back to New York, I had problems with my IBS. While in the ER room they took a CT scan of my stomach and part of my lungs were shown in the CT Scan. They found more masses in my lungs. They took a biopsy and said I had Sarcoidosis. I ended going to Mt. Sinai Hospital to their Sarcoidosis clinic in Manhattan. They got my past tests from the hospital in Florida and found out that I had Sarcoidosis the whole time.

The hardest part of living with my illness/disabilities is… 

The pain and that they all are invisible illnesses. People look at me and they say well you look fine. But they don’t know what my insides feel and look like. Sarcoidosis has taken over 90% of my body. The only place I don’t have it is in my liver and kidneys.

A typical day for me involves… 

Everyday I never know how I am going to feel. So there is no real routine. I am on permanent disability. The only thing I do every day I wake up unless I can’t get out of bed is make sure both my wife and daughter have what they need for work and school respectively. I make them their lunch as well as breakfast. After that, I am too tired so I take a nap. Then since I run a non-profit organization I check my emails to see if anyone needs help. If not most of the days I rest. This disease has taken the energy out of me. In April I was downgraded from chronically ill to terminally ill. I used to travel to raise awareness for Sarcoidosis and Rare Diseases. I no longer travel far due to my body not being able to handle the travel and the long days in meetings

The one thing I cannot live without is… 

It may sound funny, but the one thing I need every day is my one cup of coffee every morning.

Being ill/disabled has taught me… 

To value life. It has told me to not sweat the small stuff. I have learned that living each day as the best you can. I also have learned you can’t please everyone so you need to please yourself first or you won’t be able to please others.

What advice would I give someone recently diagnosed… 

Be your own best advocate! Be involved. Learn about the disease

My support system is…

I would not be anywhere without my wife Diana and my daughter Savannah who is 15 going on 30. They have been there for me physically, emotionally and most important mentally. 3 years ago I thought about committing suicide due to the pain. I would have done it if it wasn’t for my wife and daughter. I ended up putting myself in a 72-hour hospital watch for suicide prevention.

If I had one day symptom/disability-free I would… 

I would go away with my family to the beach. That is my favourite place but now since I have Sarcoidosis I haven’t been able to go that much at all.

One positive of having a chronic illness/disability is…

There are actually two positive things that have come from having these diseases. The first is the friends I have met that have the same diseases as I do. They understand what I am going through and I can talk to them about it. The most important positive for me is I knew I was strong, but I never knew how strong I was until I have been with this disease. I have fought through things I never would have thought I could. My motto is ” I have Sarcoidosis and Parkinson’s but THEY don’t have me!”

My links are:

www.sarcoidosisofli.org

https://wordpress.com/view/lifeasararepatient.blog

 

Interview October – Maya

Today on Interview October, we’re meeting Maya Northen Augelli . Let’s get to know her better:

MayaNorthenAugelli

Introduce yourself and tell us a bit about you…  

My name is Maya and I’m from Philadelphia, where I live with my husband and our dog. I run a travel planning company, and also work with a local consulting company. I became a mental health and chronic illness advocate in 2009, after being diagnosed with a relatively rare mood cycling disorder. When I’m not working or advocating, you can often find me traveling, hiking or otherwise enjoying nature, reading, writing, or doing yoga – in fact, I’m just starting Yoga Teacher Training this fall!

Chronic illness(es)/disabilities I have… 

I have Rapid Cycling Cyclothymia, a rare mood cycling disorder that’s similar to, but technically “less mild” (in quotes because it definitely doesn’t feel mild at times) to Bipolar Disorder. I also struggle with anxiety as part of this disorder, though not technically diagnosed with a separate anxiety disorder. In addition to my mental health condition, I  battle IBS and Migraines

My symptoms/condition began… 

I am told I was most likely born with cyclothymia. I started exhibiting symptoms of hypomania as early as two years old, though of course they didn’t know what it was at the time. Symptoms progressively increased in frequency and intensity through my teen and early adult years. I was finally diagnosed just shy of my 30th birthday. The migraines I have been getting since I was a teenager – tough to really say when they started, but I can definitively say I can’t really recall a time when I wasn’t prone to migraines. They’re not continual, but I have consistently gotten them at least a few times a month since I was a teen. The IBS symptoms began around the age of 23, and I was diagnosed shortly thereafter.

My diagnosis process was… 

I’ll speak mainly about my cyclothymia diagnosis process here, as they others were pretty straight forward – went to the Dr, was referred to a specialist, had a couple of tests (colonoscopy/upper & lower GI tests for the IBS) and was diagnosed.

The cyclothymia diagnosis was trickier. I’d been seeing therapists on and off since college. I had only found one I’d really trusted, but long story short, at the time my symptoms weren’t as prominent, and I was more seeing her post-divorce than for my specific mental health symptoms. In the summer of 2009, my GP put me on a low dose of antidepressants, which at first helped, but soon made me feel worse. In August 2009, I was hospitalized for two days with what I thought were non-stop anxiety attacks. The hospital increased my depression medication, and I felt worse. When I got out of the hospital, I went to the one therapist I’d trusted from past years, and we began working through things – including the fact that the medication was making me worse. I even brought my mom to a session, in which she described the symptoms I’d exhibited as a very young child (since I couldn’t quite as accurately describe them, having been a toddler when they started). It was during these visits that I was finally diagnosed with rapid cycling cyclothymia. My therapist explained that the antidepressants made me worse because I cycle so rapidly that basically, by the time the medication that’s supposed to “lift” my mood (for lack of a better phrase) hits my system, I’ve already cycled up, and the effect is compounded. So in essence, the antidepressants were putting me in almost continual hypomania (what I had thought were anxiety attacks). She subsequently brought me down off the antidepressants and we began mood stabilizers.

The hardest part of living with my illness/disabilities is… 

It’s two fold for me. One is the feeling of lack of control over my brain. I feel like I often can’t trust my own mind – because I cycle so quickly, literally every day is a complete surprise. I never know how I’ll wake up feeling (depressed, hypomanic, anxious, none of the above), and how often it’ll change each day. Not being able to trust my own brain, or feeling like I can’t, massively affects my self-esteem and often makes me feel hopeless and worthless.

The second is the stigma. The fact that people think you can just smile, change your attitude, be more grateful, look on the bright side, or choose to not feel this way is awful. When this happens, not only do I feel hopeless and worthless, I’m being told it’s my own fault, and shamed for how I’m feeling.

A typical day for me involves… 

I have a full time job, so on weekdays, my day of course involves that. But in terms of illness and coping strategies, I get up early to exercise most weekdays before work – it helps my mood, and it helps me to keep a consistent schedule. I spend time writing each morning – mostly journaling. This helps me brain dump, more or less, so that I can try to sort through the mish-mosh of feelings, emotions, thoughts all going through my brain. Without this outlet, it feels like non-stop stimulation inside of my brain, before even getting much input from the “outside” world, and it makes concentration and focus extremely difficult. Most evenings after dinner, I try to meditate, and/or do some yoga. It’s a wind down for my day, and helps settle my brain, so that I can hopefully get some sleep. If it’s not a work day, I try to spend as much time in the sunshine and fresh air as I can – especially in nature. I’ve been slacking in that lately, and really need to get back into it.

The one thing I cannot live without is… 

My loved ones. They’re my rocks. But if I had to choose an actual thing… I’d be tempted to say my medication, but I’ve had to go temporarily off of it for personal reasons, so technically, I’m living without it for the moment.  So, I’d probably have to say my journal. Writing is my solace. My journal will “listen” to my thoughts and emotions and feelings with no judgement, and it lets me get it “out of my head” without having to actually direct it at anyone, which is huge in helping my relationships with loved ones and friends (note: I’m far from perfect in this regard, but it helps). I work through so much in the pages of my journal, and I can’t imagine not having that outlet on a daily basis.

Being ill/disabled has taught me… 

That I am not alone, and that so many people struggle with their mental health. You hear the statistics, that one in five Americans have a mental health condition, but when you begin talking about your illness and advocating, and you have people you would never have thought coming to you and saying, “Thank you so much for speaking out, I struggle too,” it really hits home. That “one in five” goes from being a statistic to something tangible that you can feel in daily life.  My illness has also given me a purpose. In my adult life, I feel I’ve floundered a bit in really finding where I feel I belong. But utilizing my illness to help others has, from the very start, always felt 100 percent like it’s my purpose and a path that I have to follow. It feels such a natural part of my life, almost an extension of myself, when so little else does sometimes.

What advice would I give someone recently diagnosed… 

I have so much to say here, but I’ll try to condense it!  First, I would tell them to learn everything they can about their illness (from credible sources of course), and that when they’re ready, finding support with others who have the same/similar illness  – whether they find this in an official group or among friends or on social media/online – can make a world of difference. I’d also remind them how often depression and anxiety lie, and that there may be days that their illness wants them to believe every terrible thing about themselves, but that these aren’t true, no matter how convincing the lies sound.  I’d want them to know that there’s hope, there are others who “get it” and are here to help, and that they are not alone. Finally, I’d tell them to make sure that they have a healthcare team that they trust, and just as importantly, that trusts them. We know our bodies and our brains better than anyone else because we have lived with them our entire lives, and it’s important that our health professionals understand this – we deserve that respect as patients, to have our voices heard and not to be discounted.

My support system is…

My husband, my family, my friends, my therapist, my social media/online spoonie family.

If I had one day symptom/disability-free I would… 

Live as fully as I could – do activities I love to do, with people I care about, and try my hardest not to, as so often happens, let the anxiety of “Ok, I feel good now, but when is the proverbial other shoe going to drop”  creep in. Afterall, if I let it creep in, I’d cease to be symptom free!

One positive of having a chronic illness/disability is…

For myself, I’d say that it’s helped me to be more understanding and empathetic. Because I know I’m often struggling with a lot that others can’t see, I try to also remember this when the situation is reversed, and I try to put myself in their shoes before passing judgement. For instance, if someone’s speaking to me badly, I try to ask myself “what might they be going through that I can’t see that’s causing them to act this way?”.

In addition, as mentioned above, it’s given me a purpose and direction. Without my illnesses, I wouldn’t be an advocate, I wouldn’t be involved in so many various organizations and causes, and I wouldn’t have met so many amazing people through these.

My links are:

https://spreadhopeproject.com
www.liliesandelephants.blogspot.com
Twitter: @mayanorthen
Instagram: @myohmy23

Interview October – Jan

Interview October is almost over, but we have another guest to meet – Jan Collins

JanCollins

Introduce yourself and tell us a bit about you…  

I am Janet but prefer Jan and I am 60 years young. Recently divorced after 37 years of marriage I have 2 children, Zoe 35 and Nathan 26. Zoe has my only granddaughter Amerthyst who will be 7 in November and she is the light of my life

Chronic illness(es)/disabilities I have… 

I have among other things chronic brittle asthma, COPD, type 2 diabetes, osteoarthritis and the onset of osteoporosis in my left hip. For 15 years I was on steroids for my asthma which has caused me all sorts of digestive problems. I am pleased to say that I have recently come off the steroids and have already lost over a stone (14lbs) in weight

My symptoms/condition began… 

I have had asthma all my life, when I was 4 my parents were told it was infantile asthma and I would grow out of it. In the interim, I have had bad spells and good spells. About 16 or 17 years ago I collapsed at home and if it hadn’t been for my then 9 year old son who didn’t panic but kept his calm I could have died. For the next 6 months or more I was in and out of A and E, my mum and husband were on the phone every day trying to get me to see a specialist. We were told that as mine was asthma, not lung cancer I didn’t have priority. When I did see the specialist he put me on steroids and boy did that open a can of worms. Every time they found something else wrong it was due to the steroids. I put on loads of weight and lost all my self-esteem.

The hardest part of living with my illness/disabilities is… 

The worst point was being diagnosed with diabetes 3 years ago which restricted my already limited diet even more. My ex also has diabetes and could eat almost anything without it causing any problems. I quickly learnt I couldn’t and was put on insulin developed fat growths on my arm and in my eye and had problems with my feet. It was so frustrating, I lost my self-confidence and my controlling ex basically persuaded me I couldn’t do anything so I became housebound except when he took me out. Then he walked out, my son helped me do a food diary to work out what I could or couldn’t eat, yes it was limiting but at least I knew where I stood. I discovered an inner strength and regained some of my self-confidence. A haircut and losing weight with people telling me how good I looked did a lot for my self-esteem as well.

A typical day for me involves… 

At the moment a typical day for me starts when my alarm goes off at 5am. This gives me three-quarter’s of an hour to get up and get dressed before I wake my son. After the first of many cups of tea the dog and I go for an OK let’s get our bodies moving walk, we both suffer from arthritis. This is the first of at least 3 walks we do. Then it’s medicine time which can take up to an hour. 2 mornings a week the community transport bus picks me up from home and takes me into town (I can no longer drive due to my eye problems). My daughter comes over once a week and we go out for a coffee. Afternoons are given over to crafting and studying, I am doing an O. U. English literature and creative writing degree. After a late tea and my second lot of insulin and, my 3rd lots of nebules I do my son’s lunch box for the next day before sitting down for the evening. I usually catch up on social media and deal with anything that has cropped up, write to my numerous pen pals or read. Every day my intention is to be in bed by 10 but it rarely happens. For one thing, my evening routine of medicines, putting cream on my feet etc takes over an hour.

Being ill/disabled has taught me… 

Over the years I have adapted my lifestyle to suit my needs but despite what it sounds like my health doesn’t dominate my life I always say I am not disabled just less enabled in some fields but have learnt so many new things to more than compensate for those things. People feel sorry for me but I can’t understand why I have so much going for me and have learnt so much. These days I can’t imagine living without my health issues but that aside my Jack Russell Terrier Herbie is my lifeline, he is company, he gives me a reason to get up and walk him and thus exercise. As a result of watching my diet changes and walking Herbie, I have lost over a stone (14lbs) in weight. I am still overweight but every bit helps.

What advice would I give someone recently diagnosed… 

Pace yourself, set targets for yourself but don’t knock yourself up if you don’t achieve them.

One positive of having a chronic illness/disability is…

Being disabled has taught me so much it is difficult to remember them all. Tolerance, patience, understanding, empathy, compassion, I have become a better listener and learnt many new skills all as a direct result of my health problems

 To quote 2 sayings my grandad used to say

” count your blessings one by one every day.” These might be anything from the love of your family and friends, sunny days or just the fact that you are still breathing.

” Smile and the world smiles with you, cry and you cry alone”. People get fed up with you if you are always moaning.

Life is for living, enjoy.

My links are:

collinsjan20@gmail.com and people can private message me anytime.

Other than that I am a member of Disability Matters and I am an ambassador for the online group Carenity.com specialising in Respiratory Diseases, Chronic Pain, Depression and Diabetes.

Interview October – Beth

Interview October continues with another wonderful guest…let’s meet Beth Crutcher

BethCrutcher

Introduce yourself and tell us a bit about you…  

My name is Beth…I am a 52 yo, Married, mother of 2, Full time Registered Dental Assistant. I’ve been in the same dental office since 1995.

Chronic illness(es)/disabilities I have… 

I have Chronic Congestive Heart Failure, My Ejection Fraction, or how the blood pumps through the heart currently sits at 35- 40%, normal is 55-70%. I also have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Mixed Connective Tissue Disorder.

My symptoms/condition began… 

My symptoms first began with the birth of my first child in 1988, I was 21 years old and had an uneventful pregnancy, but soon after the birth of my daughter I noticed I could not take in a deep breath, and felt a heaviness on my chest. Since I had just had an emergency c-section, doctors overlooked any concerns as normal pregnancy symptoms. When I persisted they finally saw me and realized I was in distress as my oxygen levels were in the 70’s. I was sent to the ER and treated for pulmonary embolism, pneumonia, asthma, and even anxiety. I was away from my newborn for two weeks and discharged without a proper diagnosis. That of which I would not get until the birth of my second daughter 13 years later in 2001 and in post-pregnancy had shortness of breath, and swelling, and could not lie flat. after two weeks of medical professionals saying it was normal..an ER Cardiologist gave me a diagnosis of PeriPartum Cardiomyopathy. Pregnancy-induced heart failure,

My Ejection Fraction was at 10%  and I may get better with medications, or I may need a heart transplant.  I have been on an up and down EF rollercoaster of treatments and medications and am currently stable with an EF of 35-40%.  Still very symptomatic and having other symptoms of  extreme fatigue, lightheadedness, brain fog,  excessive heart palpitations, exercise intolerance, nausea, severe headaches, aura migraines, joint pain , stomach pain, sun/heat exposure intolerance, dizziness, high and low blood pressure readings led to having a positive tilt table test and a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), an autonomic dysfunction, Dysautonomia. and blood work revealed a high ANA reading which gave me a diagnosis of Mixed Connective Tissue Disease, an autoimmune disorder.  All aspects of each illness has its challenges and it is often hard to balance one against the other.

The hardest part of living with my illness/disabilities is… 

An unpleasant aspect of HF and POTS and MCTD, for me, is doing a task that involves squatting down (rather than bending from the waist, which makes me feel faint on standing upright). Getting something from the bottom of the shelf, or reaching and stretching in a continuous motion, walking up a flight of stairs, as well as taking the elevator leaves me very short of breath, or dizzy. I ask why this happens and they said it’s a bit like standing on a garden hose – squatting down like that with an inefficient heart restricts the return of blood to the right side of the heart through the vena cava, consequently there is less to go to the lungs for oxygen before being pumped around the body by the dysfunctional left side of the heart. I also don’t like the pain in my joints, it can make the smallest of tasks unbearable.

A typical day for me involves… 

First getting out of bed in the morning is slow moving.  I have learned to move carefully. I only have so much energy to use in a day. Monday-Friday I work full time in a busy dental office. I have learned my limits and go through life accordingly. When I’m in a flare-up, I rest. I do activities/ family functions when I feel up to it, when I feel I can’t… I don’t.

The one thing I cannot live without is… 

My Husband and children and soon to be granddaughter!

Being ill/disabled has taught me… 

You know who your real friends are. The ones that understand you may not be capable of doing what you once did, but support you when you can or can’t.

What advice would I give someone recently diagnosed… 

Trust yourself. Keep telling yourself, You’re not unreliable, Your health is. It’s not your fault

My support system is…

My family and friends and work family. And social media groups.

If I had one day symptom/disability-free I would… 

I would with all my loved ones around me, run down the beach, climb a mountain to look at the view down below. And just take in the sunshine and eat whatever I want!!!

One positive of having a chronic illness/disability is…

The connections I have made through social media and becoming an advocate for PPCM with SavetheMommies.com. My Heartsisters are like my family.

My links are:

SavetheMommies.com

Interview October – Maria

It’s time to meet our next Guest for Interview October. This is Maria Thomas

MariaThomas
photo credit: Amy Boyle Photography

Introduce yourself and tell us a bit about you…  

My name is Maria Thomas, and I’m a writer, editor, content creator and book nerd. Seven years ago I launched my blog, My Life as a Puddle, where I’m creating hyperhidrosis hope and awareness one drop at a time.

Chronic illness(es)/disabilities I have… 

Hyperhidrosis (excessive uncontrollable sweating), ulcerative colitis and Hashimoto’s thyroiditis

My symptoms/condition began… 

Hyperhidrosis- age 7

UC – age 33

Hashimoto’s – age 36, and I found out by accident after some bloodwork!

My diagnosis process was… 

A long time coming for my Hh. I found the term in a Google search but didn’t get a proper diagnosis until age 21.

UC – the perfect storm. I was going through a divorce, selling the first home I ever owned, and moving into a tiny little apartment. It was a trifecta of stressful events and my body decided to respond with blood in my stool and a frequent need to go.

The hardest part of living with my illness/disabilities is… 

Hh – Getting people to understand that I am not sweating because I am nervous. I’m nervous BECAUSE I’m sweating. There’s a difference. It’s also hard for people to understand how much my life and choices are affected by my sweating. It’s not “just a little sweat.” I try not to let it rule my life but sometimes it does.

UC – having a chronic autoimmune condition makes me tired sometimes, and more prone to GI pain and distress. I’m not high maintenance, but I’ve really had to overhaul the way I eat, which can make it difficult to eat out sometimes. I now follow a Paleo nutrition plan, which is hard when you live in a state known for its craft beer, which is unfortunately loaded with gluten.

I also have to stab myself every other week with a biologic injectable medication. Try that with sweaty hands!

A typical day for me involves… 

Turning my desk fan on and off at least 25 times a day while at work, then coming home and changing my sweaty clothes and socks if necessary. If I’ve worn sandals, I’ll usually wash my feet since they’ve developed a coating from sweating.

UC-wise I never know when I’ll experience symptoms. I’m in remission now, but occasionally I’ll have gurgling sounds and stabbing pains in my lower abdomen.

Hashimoto’s-wise, sometimes I feel so lethargic it’s like i haven’t slept in days. Other days I feel like I could run a marathon.

The one thing I cannot live without is… 

My books, my husband, and my Pug named Maya

Being ill/disabled has taught me… 

To listen to my body and take care of it. I was hospitalized once because of my ulcerative colitis. It was scary and miserable and terribly isolating. It also taught me to be my own best health advocate. I had nurses trying to feed me grains and gluten and dairy. Not once did my GI doctor at the time say gee, you might want to avoid all that stuff. I had to seek out a functional medicine doctor to learn all of that and switch to a Paleo diet.

What advice would I give someone recently diagnosed… 

Do your research! Read the medical literature, read books, and absolutely go see a functional medicine Doctor who treats the whole body as a system and doesn’t just prescribe medications to cover up symptoms.

My support system is…

My husband and my family

If I had one day symptom/disability-free I would… 

Go on a public speaking tour and wear high heels without no-show socks or absorbent insoles because I wouldn’t be worried about sweating all over everything ! Then I’d do a meet and greet and shake everyone’s hand.

One positive of having a chronic illness/disability is…

I get to choose how I respond to my life, which is why I choose to make my sweaty mess my message. You can either rise up or stay below. All it takes is one different choice.

My links are:

https://www.facebook.com/mylifeasapuddle/
https://twitter.com/MyLifeAsAPuddle
https://www.instagram.com/mylifeasapuddle/

Interview October – Roger

Let’s meet Roger Potter, our next guest on Interview October. Here he is:

Rog Potter

Introduce yourself and tell us a bit about you…  

My name is Roger Potter, a young strong Senior who is one of the original blue babies of the 1940’s, born also with congenital heart disease and one of the pioneering babies that had open heart surgery in 1952. I am also one of 20 co-authors of a up coming book called Cardiac Athletes vol 2.

Chronic illness(es)/disabilities I have… 

I was born a Blue Baby – this means that you’re born with a pale bluish color to your skin which means that you are still mixing oxygen and blood when you’re not supposed to be which indicates you also have congenital heart disease.

My symptoms/condition began… 

My symptoms began at birth and the diagnosis was at 6 months of age.

The hardest part of living with my illness/disabilities is… 

The hardest part as a child was not being able to keep up with the other kids and getting tired very fast.  Now as an adult, it’s accepting the fact that there are things I can’t do or doing them differently.

A typical day for me involves… 

Being active, living as full a life as I can and getting in the gym on a regular basis, for this condition is not going to stop me – I will capitalize on it.

One thing I can’t live without is…

The one thing I can’t live without is activity and going to the gym for this malady will not defeat me.

Being ill/disabled has taught me… 

Feeling or being disabled has taught me how to live boldly and be able to conquer that which I can and let others do that which I can’t.

What advice would I give someone recently diagnosed… 

I would tell those that are recently diagnosed to find out all that you can about what you have and talk with your Doctor at great lengths about exactly what you have then find out what your restrictions are like I did – and then find out if there is a way that you can accomplish at least some of your goals safely.

My support system is…

My support system is in part myself, for I seek to challenge myself on a safe basis and with Facebook Cardiac Athletes when I can motivate those that are going through problems that I had many years ago.

If I had one day symptom/disability-free I would… 

If I had one day free of all and knew that it wouldn’t bother me, I would max the day out. One positive of having a disability is knowing you’re a survivor and in an exclusive club and being able to do things that you weren’t supposed to be able to do.

My links are:

http://www.openheartsurgerytoseniorstrength.com/

https://twitter.com/SeniorPower

Interview October – Jenni

Our Interview October series continues with our next guest, Jenni Lock. Let’s meet her now:

JenniLock

Introduce yourself and tell us a bit about you…  

My name is Jenni Lock.  I’m 43 years old and hail from Ohio. I created Jenni’s Guts blog in 2008 and write about my journey with intestinal nonsense and other health issues.  My sense of humor and sarcasm are all part of my charm. I have a deep love for animals, learning about everything, socializing from a far, and my beautiful daughter.

Chronic illness(es)/disabilities I have… 

Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea mainly. However, I also suffer from Fibromyalgia, Anxiety, Depression, Insomnia and struggle with a touch of PTSD.

My symptoms/condition began… 

I started having health problems in roughly 1990, though I wasn’t officially diagnosed with Crohn’s until 1995.  Everything else wrong with me just snowballed over the years after that.

My diagnosis process was… 

Difficult. I suffered from a lot of stomach pain, back pain, joint pain and lost about 15 pounds due to running to the restroom about 15-20 times a day. My family doctor told me I was depressed and needed Prozac. That didn’t help so I went to a specialist. The specialist told me I had Irritable Bowel Syndrome and needed to eat more fiber and scheduled me for a sigmoidoscopy, but everything came back normal so I was, again, told to eat more fiber and decrease my stress. I quickly found out fiber made things worse and I continued to get sicker and sicker. I went to a different specialist who did many more tests but everything came back normal except for one blood test. It showed an inflammation/infection rate of seven times the normal rate. I exhausted all the testing options so I was scheduled for surgery to figure out what was happening inside me.  During surgery they found I had about 3 1/2 feet of severely inflamed small intestine and the final diagnosis was Crohn’s disease.  The whole diagnosis process took about 2 years.

The hardest part of living with my illness/disabilities is… 

My inability to do things with my family and friends because of being tied to a restroom and not feeling well enough.  Especially not being able to travel and go to fun events.  I’m not able to do a lot of things with my daughter because of this and it is really hard for me to continually have to say, “No, I’m sorry but I’m too sick” or “I can’t because of the bathroom situation.”

A typical day for me involves… 

After an exhausting night of not sleeping well, or even at all, the mornings are usually met with many trips to the restroom which continues throughout the day but most of the time tapers off at least a little throughout the day.  I watch a lot of movies and television, read and research, or put on music and draw.  I’m unable to work so I mainly just try to keep myself from going stir crazy.

The one thing I cannot live without is… 

Laughter.

Being ill/disabled has taught me… 

I can be a person with a disability (or many actually) but it doesn’t define who I am.  I’m so much more than just someone with medical problems.  And it has taken struggling with so many things wrong with me to actually figure that out.

What advice would I give someone recently diagnosed… 

This diagnosis isn’t the end of you. Study and learn as much as you can about your illness from every source you can get your hands on (except WebMD!!).  You have an inner strength that you never knew you had so use it to fight for proper health care and proper treatments and don’t ever, EVER settle for less – not from your doctors, healthcare professionals, or anyone else.  You’re worth it!

My support system is…

My family and friends.  And a furry little friend or two always make things better!  (Shoutout to all the pets I have had along the way – I miss you guys!)

If I had one day symptom/disability-free I would… 

Grab my daughter, get in the car and just drive.  We would go to all the places she always wanted to go and do all the things she wanted to do that I couldn’t because traveling, for me, is so difficult.

One positive of having a chronic illness/disability is…

All the communities out there that have allowed me the opportunity to meet people and learn about their stories.  I’m so fortunate that my blog has reached so many people and we all get to help each other cope.  I think it is so important to have a community of people who understand, even if they are hundreds of miles away from you and you never physically meet each other.

My link is:

JennisGuts.blogspot.com

Interview October – Derek

We continue our Interview October series with a guest I think you’ll enjoy. Let’s meet Derek Canas

DerekCanas

Introduce yourself and tell us a bit about you…  

My name is Derek most people call me D-REK I’ll explain that later. I’m 33 years old, and survivor of a congenital heart defect and open heart surgery. At sixteen years of age, I was diagnosed with Aids.

Chronic illness(es)/disabilities I have… 

Congenital Heart Defect called Transposition of the Great Arteries/ HIV/Aids

My symptoms/condition began… 

Symptoms of heart condition diagnosed at 3 months of age. Open heart surgery to correct it happened right after in 1985. I required 15 blood transfusions during surgery and recovery. During surgery, the SA node was damaged requiring a pacemaker to correct. After a 3 month recovery, I made it home but life began to show another hidden monster. I wasn’t growing at a normal rate.

My diagnosis process was… 

Heart was at 3 months HIV/Aids wasn’t discovered until the age of 16.

The hardest part of living with my illness/disabilities is… 

The Stigma surrounding HIV/Aids It makes relationships and friendships very difficult.

A typical day for me involves… 

Spending the day taking care of my two dogs and doing online advocacy from my website

The one thing I cannot live without is… 

Music I’m a DJ that’s were the D-REK name came from. So music has helped me through difficult times and made some great memories working in nightclubs

Being ill/disabled has taught me… 

I’m so much stronger than I ever could have imagined. I’ve been underestimated most of my life but I’ve always fought through whatever has tried to stop me.

What advice would I give someone recently diagnosed… 

Keep your head up things do get better. Don’t let the words in your medical records consume you. You can still chase your dreams and live a very full life.

My support system is…

Family they are great always keeping me laughing and having fun. I’ve been in some very scary situations over the years and we always found a way to find the funny moments.

If I had one day symptom/disability-free I would… 

Probably run wild. Life has tried to slow me down for a reason. I like work and if I could I’d go nonstop

One positive of having a chronic illness/disability is…

You learn the value of your health and how quickly it can fade away. You set boundaries and spend more time with those you truly care about. Little moments become something very valuable

My links are:

https://www.facebook.com/EndTheStigma912
https://twitter.com/DJDREK84
https://www.instagram.com/dreksangelsandwarriors/
https://www.youtube.com/channel/UCS8Ucb4xH9hJMwhngUOFaDg

 

Interview October – Vern

It’s Interview October, where we enjoy a month of guest posts. Today, let’s meet Vern Laine:

Vern

Introduce yourself and tell us a bit about you…  

My name is Vern, I’m 50 years old and was born and raised and still live in British Columbia, Canada. I’m married with 2 boys. I work as an office manager and like to create artwork. I use it as ‘art therapy’.

Chronic illness(es)/disabilities I have… 

I was finally diagnosed with Crohn’s Disease shortly after graduating high school over 30 years ago.

My symptoms/condition began… 

My ‘symptoms’ showed up one day suddenly, starting with a feeling of what felt like a gas bubble in my throat which made its way down to my gut where the pain started. The pain was intense and happened all day long, especially after I ate. It was not uncommon to find me curled up in the fetal position or in the bathroom with 20-30 bowel movements every single day. I basically stopped eating and dropped 40 pounds.

My diagnosis process was… 

It took 6 months, several doctors and dozens and dozens of all kinds of tests to finally come to the conclusion of Crohn’s Disease. At first, they thought it was bacterial, then maybe a virus and even one doctor thought all the pain I was suffering was in my head! It was soon after my final diagnosis that I ended up in the hospital for a month after emergency surgery and bowel resections.

The hardest part of living with my illness/disabilities is… 

The hardest part with Crohn’s is the unpredictability of the disease. I can be fine one minute and the next, be in the hospital. Because of the unpredictability, it’s very hard to make plans, go on vacation or even just go out with my family. There are many, many different side effects with Crohn’s, predictability is just the hardest.

A typical day for me involves… 

A typical day is usually the same as any other person. Up early, kids off to school, work, dinner, kids to sports, sleep. Though, when I can, I need to rest. I have to force myself to do so and often don’t let my body rest. If I’m having a flare of the disease, all this changes of course. Still up early, kids to school, stay home and rest, switch diet to liquid only, rest, sleep.

The one thing I cannot live without is… 

I can’t live without my family, they keep me sane.

Being ill/disabled has taught me… 

Being ill has taught me to accept help if it’s offered. Many years I went without help when offered to me because of the shame and embarrassment of the disease. Unfortunately, Crohn’s is stigmatized as just a “pooping” disease and that’s part of it, but there is so much more. Pain, fatigue, abscesses, fistulas, fissures, kidney stones, malnutrition, vitamin deficiency, etc. Help from family, friends, doctors, nurses and the like, if offered, take it.

What advice would I give someone recently diagnosed… 

I have 2 pieces of advice to the newly diagnosed is 1. to educate yourself. There is so much good information on the Net with websites and blogs from those of us that suffer from Crohn’s. And 2. to keep a log of what you eat, when you eat it and the results (how many times to the toilet, pain if any, etc)

My support system is…

My support system is my family (wife and kids) and the rest of my family, some friends and doctors. I also have social media support through Instagram, Facebook, Twitter and my blog.

If I had one day symptom/disability-free I would… 

If I had just one day without Crohn’s? I would eat whatever I wanted. I could eat everything that I’ve been avoiding for the past 30 years!!

One positive of having a chronic illness/disability is…

One positive for having a disability is not taking anything for granted and even though I have a chronic illness that will be with me the rest of my life, there are many others in this world that have it worse than I.

My links are:

https://crohns-leavingtheseatdown.blogspot.com
https://twitter.com/Crohnsguy
https://www.facebook.com/pages/category/Personal-Blog/Crohns-Leaving-The-Seat-Down-257412800953497/
https://www.instagram.com/crohnsguy/

Staying Connected…

Here’s a quick question for you. When you are a patient in the hospital, what do you do for entertainment? Do you watch TV? Read a book or magazine? Surf the internet or check out Facebook? Go for walks or check out the Gift Shop? Or are you mos….woah, woah, WHAT????
GO BACK…surf the internet? Check out Facebook? Don’t you use up a lot of your Data that way? Or does your hospital provide free Wifi?

I was recently invited to be interviewed for a news article about the Nanaimo Regional General Hospital, as it’s the first hospital in BC to offer free Wifi for patients and visitors. Now, we’re not talking blazing fast for video downloads, but good basic Wifi for surfing the Internet while you are in the hospital. I don’t know if this is offered where you live, but it’s brand new for us. There is one other BC hospital trialling this, and the BC Ministry of Health hopes to roll the program out to the rest of the province, though there is no set timeline.

I can tell you from my own experience that this is a very welcome move. I’m not a TV watcher (I don’t even watch at home) and I often don’t feel like reading. So what’s left? I listen to music a lot, but when you hallucinate music, that’s not always the first choice either. Having the chance to message chat with a friend or to be on Facebook or Twitter really appeals to me and I think this will be a very popular decision.

Here are the transcript and sound bytes from the interview:
~~~~~
Patients and visitors to Nanaimo Hospital can breathe easier knowing they won’t have to worry about racking up high cell phone bills.
Island Health announcing today they’re introducing free wi-fi at the hospital.

Patient partner Pamela Jessen says when it comes to Data usage, it removes a heavy burden from people already in a stressful situation…

Island Health says they hope to expand free Wi-Fi to more of their sites, but there’s no timeline yet in place.

Free Wi-Fi at Nanaimo Regional General Hospital means patients won’t have to feel isolated and disconnected.

Island Health announced the service today, saying the Wi-Fi will be for keeping in touch and using the internet but won’t be able to handle high-def video streaming.

Pamela Jessen with the Patient Voices Network says it removes a great burden from patients but also their visitors…

The service is expected to cost roughly five thousand dollars a year. It’s paid for by the Nanaimo Hospital Auxiliary, who raise funds for the hospital.
~~~~~
What about you? Your thoughts in the comments would be appreciated!

As for this idea spreading far and wide?

There is always hope!