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 – Michaelann

Here is our newest guest for Interview October  – Michaelann Dahlman

Michaelann-02 copy

 

Introduce yourself and tell us a bit about you…  

I’m 57, I’ve been disabled since I was 18, I was also a housewife/mother, nest now empty. I am a writer, & a photographer.

Chronic illness(es)/disabilities I have… 

Arthritis, chronic fatigue syndrome, fibromyalgia, and a mild Traumatic Brain Injury

My symptoms/condition began… 

I was diagnosed with arthritis when I was 18 (1979), chronic fatigue when I was 29 (early 1991), fibromyalgia in 1995 & the traumatic brain injury is from a car accident in 2007

My diagnosis process was… 

I went to the Pine clinic in Kitsilano when I was 18, they referred me to Dr. Art Hister, he diagnosed me with arthritis. I was diagnosed with chronic fatigue in 1995, by my then Dr. She referred me to a rheumatologist who diagnosed me with fibro, in 1995. I was diagnosed with the traumatic brain injury in 2008, after I requested a referral to a neurologist.

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

Dealing with all my limitations is frustrating & also being in so much pain.

A typical day for me involves… 

I wake up, take my medication & go back to bed for at least 1/2 an hour. I don’t go out much anymore, as walking is a huge problem & since I am not on full disability yet, I don’t have a bus pass. I try & do housework & dishes, as energy & pain allows. Luckily I live in a seniors (55+) building, so I have some light housekeeping every 2 weeks.

The one thing I cannot live without is… 

Since they don’t want to give me stronger painkillers, I’d have to say my medical marijuana.Second would be the internet, I use it to watch TV since I don’t have cable. And I have a VOIP phone, as well.

Being ill/disabled has taught me… 

Be kind. Everyone is fighting a battle that no one else knows about.

What advice would I give someone recently diagnosed… 

Learn all you can, be your own advocate & never hesitate to ask for a 2nd opinion, everybody makes mistakes. Don’t hesitate to ask for help when you need it.

My support system is…

My husband. My mom & my brother. And the friends I have made online.

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

Jump my husband & go white water rafting.

One positive of having a chronic illness/disability is…

Since we are both disabled, my husband & I get to spend a lot of time together, which is wonderful.

My links are:

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/

Interview October – Char

I’m starting a new feature! It’s Interview October, where I’m kicking off an entire month of guest posts with fellow bloggers who also live with Chronic Pain and Invisible Illness. Let’s start off the series by meeting the lovely Charlene Schoeman:

Char

Introduce yourself and tell us a bit about you…  

My name is Charlene. I was born and raised in South Africa, I then moved to Italy where I taught English to adults and children of all ages. After ten years in Italy, I moved to England where I was a Teaching Assistant, working one-to-one with disabled children. I loved my job!

Chronic illness(es)/disabilities I have… 

In 2014 I was diagnosed with Premature Ovarian Failure, which is basically early onset menopause and then in 2015, I was diagnosed with Chronic Fatigue Syndrome (Myalgic Encephalomyelitis). I have been housebound and often bedridden since.

My symptoms/condition began… 

My problems started in 2014 with a lot of pain all over my body. Doctors did all kinds of tests and could not find anything wrong with me, so I was sent home with painkillers. The pains were mainly in my joints like my knees, hips and fingers and also in my larger bones like my thighs, shins and upper arms. It was an intense stabbing and shooting pain and it would move around.

I was also picking up every bug that went around, working in a primary school meant that I was ill every other week. I started feeling guilty for taking so much time off. The day it really hit me was actually 1 April 2015 – I was cycling with my dad in Italy while on Easter break and I lost my voice, later that evening I had a sore throat and earache – I have been at home since. I did try returning to work a few times after that, but never made it through a full day and would then need days off to recover from those few hours at work.

My diagnosis process was… 

I initially went to my doctor in Italy and then again in the UK for the ear and throat infection that, despite multiple courses of antibiotics, was only getting worse. It lasted over a month. When I continued to deteriorate and started feeling really weak and exhausted, they did loads of blood tests to try to find the cause of my symptoms. They tested me for deficiencies, for infectious diseases and I’m not even sure what else. My doctor just kept saying she would test for this and that “just in case”.

All tests came back negative – according to my blood and urine, I was healthy. But I was in so much pain and so weak. She said it was likely Post Viral Fatigue. I was not convinced of this diagnosis. It sounded way too mild for what I was going through!

I then had a routine visit to my endocrinologist for my ovarian issues, I mentioned my symptoms to him and he was concerned. He had me tested right there and then for a few more things in his department and booked me to test for Adrenal Failure, prescribing an emergency supply of cortisol for the meantime, just in case. Again all tests came back negative. He said it was likely Chronic Fatigue Syndrome.

All tests were done twice, a few months apart and again everything came back negative – healthy. I was then referred to a Chronic Fatigue Clinic by my doctor and after a 2-hour assessment with a psychologist, they reported I was mentally sound and they agreed that I have Chronic Fatigue Syndrome.

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

The hardest part about living with Severe ME/CFS is not being able to do everything I want to do and love to do. I cannot work, I cannot cook, I go months without being able to paint, I can’t do gardening, go for walks and explore nature, I can’t leave the house or travel or swim, or help my family if they are ill. I can’t even bath more than once a week! It’s having so many plans and dreams and goals – daily – and not being able to accomplish even one of them some days – many of those days are spent in the dark, unable to tolerate open curtains or light. But I continue to plan and dream!

A typical day for me involves… 

My typical day involves me waking up early, lying in bed for hours “waking up”, I walk to the bathroom with my walker, I sit on it to brush my teeth, I rest back in bed after bathroom trips. I read a little. I pray. I check my social media accounts and respond to messages. I might just lie there daydreaming for a while in between all these things. I try to write something in one of the many drafts I have for my blog. It takes a long time to complete a whole post! I usually don’t finish any of these activities.

Then it’s lunchtime, my sister (who is my full-time carer) brings my lunch to my bed or to the sofa if I have managed to get to the living room. I eat reclined and then lie down for hours while digesting. This is when I usually watch Netflix… I just watch it until digestion is done and I have enough energy and cognitive function to recline again and read or write some more or do some art or craft while reclined.

During better months I might sit at my desk for a few minutes and watercolour. I have my pages cut to small postcard sizes so I don’t have huge projects that never get finished. Even the small ones will take a few sessions to complete.

Dinner time is the same as lunchtime. Eat, Netflix, then try to do something online again. Having such severe ME/CFS means I’m completely isolated and housebound, so my only connection and contribution to the outside world is online. It helps that most of that can be done on my phone which is easy to use and light enough to hold most of the time – though there are times daily that I am unable to hold my phone too!

The one thing I cannot live without is… 

The one thing I cannot live without is God. Honestly, I don’t know how I would be this positive and hopeful and at peace without His joy and peace that passes understanding. Also, my sister. She is such a considerate and selfless carer.

Being ill/disabled has taught me… 

Being ill has taught me to be less judgemental of others. We never know what somebody is going through. Our problems are not always visible. I’ve also learned that there is no one-size-fits-all solution to any health problem. Eating fruit and doing exercise can actually make some people much worse. Including me. Who knew? I would never have imagined that.

So my biggest lesson is to listen and not judge, and no matter what, be kind always because you don’t know what somebody might be going through.

What advice would I give someone recently diagnosed… 

My advice to newly diagnosed patients is to listen to your body. Symptoms are real and they not only tell you there is something wrong, but they guide you to a solution too. If you’re exhausted, rest. If you’re hungry, eat. Your body is in a constant fight to survive and heal and recover… listen to it and be your own health care advocate. Find people who will listen and understand you. Get connected online with people going through the same things. You do not have to walk this path alone!

My support system is…

My support system includes my sister who is my full-time carer, our parents and my online support group for people with ME/CFS.

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

If I could have one day completely symptoms free I would want to spend the day out with my family, swim in crystal clear waters, go walking in the countryside up hills and mountains to enjoy the views and eat all the foods I cannot eat in my condition – things like gelato in Italy, mums roast dinner or pasta al ragu, and just so many other things… I’d also dance and jump and do cartwheels!

One positive of having a chronic illness/disability is…

Depending on the symptoms and severity, which in my case fluctuate a lot, one of the benefits of having a chronic illness has been having the time to do some things I couldn’t do before. For example, I can draw and paint and blog and read and watch lots of films – I never had time for those things while working, even though I have always loved them.

Another great benefit I’ve had from this illness is community. Getting to connect with so many amazingly strong and resilient human beings from all over the world. Hearing and sharing their stories and supporting each other.

My links are:

http://chronicallyhopeful.com

https://www.facebook.com/chronicallyhopefulblog

https://www.instagram.com/chronicallyhopefulblog

https://www.twitter.com/chronic_hopeful

Conditionally Speaking…

Welcome back!

I’ve talked specifically about a few of the conditions I live with, but I thought today I’d give you an overview of the 13 different health issues that make up who I am. Some are serious, some are just an inconvenience, but all of them are a part of me. Here’s the list:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • High Cholesterol
  • Brachydactyly Type E
  • Raynaud’s Disease
  • Hypothyroidism
  • Vulvar Intraepithelial Neoplasia 3 (VIN 3) – now healed

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.

Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it. I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing. Of course, I have weird fingers anyway…which leads to another thing on my list.

Brachydactyly.  Pronounced Brackee Dack Til ee, there are several types of this disorder and I have Type E.  It’s described as such, from Wikipedia:

Brachydactyly (Greek βραχύς = “short” plus δάκτυλος = “finger”), is a medical term which literally means “shortness of the fingers and toes” (digits). The shortness is relative to the length of other long bones and other parts of the body. Brachydactyly is an inherited, usually dominant trait. It most often occurs as an isolated dysmelia, but can also occur with other anomalies as part of many congenital syndromes.
Brachydactyly.svg
I was born missing the bone as shown in Type E, but it wasn’t apparent until I was about 5 or 6 years old and the ring fingers on both hands stopped “growing”. Each one is about a half inch longer than my pinkie, and that’s it. When I make a fist, there is no knuckle formation either.  You can see the flatness in the photo beside my hand.
PamFingers2  PamKnuckles
People always think my ring finger is swollen, but it’s actually the extra skin that would have covered the finger if it had grown to full length. My feet are the same way as well:
PamToes1
I can’t actually bend any of my toes individually – if I try to bend them, they all bend at the same time.  The second and third toe are mildly webbed on each foot and then you can see how severely affected the “ring toe” is affected. That’s because of the missing bone in the foot, just like the ring finger. The pinkie toe is basically normal. Each foot is the same.

Now because this is a genetic condition, I was quite interested to see if my kids or grandkids would have the same thing, but no…I’m the only one who has presented with it. I was adopted at birth and always wondered if anyone in my birth family had it too. I was able to find my birth mom approximately 15 years ago, and again, I am the only one on her side of the family with this condition. She doesn’t know about my birth Father’s side, but I believe I may have tracked down a family member for him and I’m just waiting to see if she contacts me. His name is Arvay Bernath and he was born and raised in Nanoose Bay, BC on Vancouver Island. He dated my mom Bonnie Rebecca Anderson from Parksville, BC on the Island and they were engaged when she became pregnant with me. Her dad didn’t approve and so they broke up and I was put up for adoption. Arvay appears to have passed away in 1997, but from information, I found on MyHeritage.com there is a relative named Lily Bernath who started a search page. I left her my contact info, but she hadn’t been on the page since 2017, so who knows if she’ll get my info or not. At any rate, he or his family may or may not have Brachydactyly too, or I could just be an anomaly.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis, which means (again according to Wikipedia):

Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.

Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked Dr Leong if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try and exercise a bit more.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

DraggingMyButt

Oohhh, that is NOT a good look on me!!! Dr Leong put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

The other few things on the list are all fairly minor. I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone. The High Cholesterol is managed easily with medication (too much ice cream!). The Reynauds is something that happens when my fingers and toes are exposed to the cold…they go bone white and lose sensation, so I have to be careful when getting things from the freezer or being in cooler windy weather, etc.

So there you have it. Thirteen separate conditions with one healed and Chronic Pain is a part of 7 of them. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. I’m going to do a separate blog post about my Fibromyalgia because that’s been my predominant pain for so many years, but suffice to say that you have to be mighty strong to live like this, to get through the day to day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, unretractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I wish our Government would get on board with this. I know things are happening, and we’re getting closer, but it’s not well within reach for everyone.

Thanks for indulging me and letting me share more about me with you. If you have any questions or comments, please feel free to leave them here. And remember…

There is always hope!

Talkin’ Bout My Ment-al Illness

Did you automatically sing that title as “talking bout my Generation”?  That’s what I was aiming for!

I want to talk about Mental Illness today and the meds I take. I’m not ashamed to say I have Bipolar Disorder but I know there is a huge stigma around having a mental illness and talking about it. There are far too many people who grew up believing you should keep things like that hush hush because it would ruin your reputation, and that of your family if you said anything. People were put away in homes and hospitals who were severely mentally ill, or stories were told about “crazy Aunt Gladys” or “weird Uncle Marvin” and you knew you weren’t supposed to either hear them or repeat them.

Things are changing thank God, and I’ve never been afraid to just come out and say “I am Bipolar” in conversation. It’s a part of me, so why would I hide it? It was actually a relief to finally have a diagnosis because then I knew what those manic highs and depressing lows were all about. Do I like the highs and lows? Sometimes. They can be exciting, and energizing and fun. They can also be ugly and messy and scary. But the overall thing about having BD is that it’s uniquely a part of me. Take it away, and I would be so different. Less courageous. Less outgoing. Less interesting. Less, less, less….

One difficult thing about having a mental illness is the issue of being on medications. What you’re trying to do is balance the chemicals in your brain called Serotonins. Finding the right balance is a tricky business and can sometimes take years. I know people who have been on up to 17 different medications at various times, just trying to find the right combo that works for them. I’ve been lucky in that I was put on Seroquel when I was first diagnosed and it worked well for me for a long time.

It wasn’t until late 2016 when I started experiencing the auditory hallucinations  – I could hear music when others couldn’t, and I knew something was going on. I saw a Psychiatrist to rule out any new mental illnesses, and then Dr. Leong recommended the MRI and EEG I’ve talked about in earlier posts. We also decided to switch the Seroquel to something new and that’s when I started taking the Abilify.
I was nervous about taking it at first because of the list of side effects. I am bolding the ones I’ve experienced so far:

Common Abilify side effects may include:
  • weight gain;
  • blurred vision;
  • nausea, vomiting, changes in appetiteconstipation;
  • drooling (mild, at night);
  • a headache, dizzinessdrowsiness, feeling tired;
  • anxiety, feeling restless;
  • sleep problems (insomnia);
  • cold symptoms such as stuffy nose, sneezing, sore throat.

Now, why can’t Drug Manufacturers automatically make a drug with weight LOSS as a side effect??  Why is weight GAIN always the big one listed (haha). Seriously…what are they putting in there…hot dogs?? Milkshakes?  Okay, I’d take it in milkshake form (I LOVE milkshakes!), but I just don’t understand this. It must be a filler of some kind. Then there’s drooling. What the hell kind of side effect is that??? DROOLING??? Who thinks these things up?
~~~~~~~~~~~~~~~~
“Hey Ron”
“Yeah Charlie?”
“Do ya think we should make people drool with this one?”
“Oh yeah…we haven’t added that one in a long time. I bet people miss that side effect…yeah, let’s add it”.
~~~~~~~~~~~~~~~~~
*snork*   Right!  Okay, so now, I’m fat and drooling. How else can we make this attractive? Oh, I know…let’s make me constipated too! And then we’ll make me super tired, but add in insomnia, so I can’t sleep!! Mwaaaahaaahaaahaaahaaaaa

WitchesBrew1

Yeah…that’s about what it feels like. Seriously, I don’t understand why half these side effects are considered acceptable, but we go ahead and take them, because the side effects are worth the overall benefit of the drug itself. And what benefit am I getting from the Abilify? Well for one thing. I have energy again. And an interest in life. I’m not spending 90% of my day sleeping. I’m doing the household chores again. I’m getting together with friends again – socializing. I’m still in chronic pain, but my brain is in such a better place that I’m managing my pain better. Could I go back to work in this condition? No,  not a chance. My pain and fatigue still wipe me out, and I can only manage small chunks of all of these things, broken up throughout the day, but the fact is, I am able to do them again.

I don’t know how long it went on for, but most of my days on Seroquel were spent either in bed sleeping or in my recliner, playing on the computer. I would aimlessly shift between Facebook and a select few other websites I frequent, like Pinterest, some contest sites and game sites where I enjoy solitaire or various slot machines (not for real money). I still do that now, but it’s in between all the other things I’ve found interest in again. I also tend to do a lot of online shopping. Too much, and this can be part of my mania cycle of BD as well. My husband never says anything as long as I record my transactions in our financial system. But I’m doing other things like crafting again, and I’m making cards again for birthdays and stuff, and I want to learn to crochet again (I was just starting to learn and then boom!, totally lost interest when I started having trouble with the Seroquel and didn’t KNOW I was having trouble with it).

Now, here is the list of SEVERE side effects of Abilify. Again, I am bolding the ones I’ve experienced so far:

Call your doctor at once if you have:

  • severe agitation, distress, or restless feeling;
  • twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs (very rare and only for a moment);
  • mask-like appearance of the face, trouble swallowing, problems with speech;
  • seizure (convulsions);
  • thoughts about suicide or hurting yourself;
  • severe nervous system reaction–very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
  • low blood cell counts–sudden weakness or ill feeling, fever, chills, sore throat, swollen gums, painful mouth sores (I get inflamed tastebuds), red or swollen gums, skin sores, cold or flu symptoms, cough, trouble breathing; or
  • high blood sugar–increased thirst, increased urination, hunger, dry mouth, fruity breath odor, drowsiness, dry skin, weight loss    **oh LOOK! There’s my weight loss, but look what I have to go through to get it!! 🙁

Because I have Type 2 Diabetes, I have to be extra careful in taking this medication. I need to check my blood on a more frequent basis, to make sure I’m maintaining optimum blood sugar levels at all times. I currently inject 14 units of insulin at night only and have done so for about 3 years now. If I notice that my sugars are going quite high on this med, we may have to change that up, and that will be hard for me. I like the benefits of this drug, and I’m not sure I want to start experimenting with other medications.

So…what about you dear reader. Do you have a mental illness? Do you talk about it if you do? Why or why not? Do you know other people who experience prejudice because of a mental illness? How are they treated differently? Do you stand up for them? Advocate for them?

It’s a scary world out there for people with mental illnesses. We never know for sure who our allies are or where we can feel safe talking about our lives and what we experience until we start talking to others. I make myself a safe haven. I talk about my mental illness so others know they can be safe and vulnerable around me. If you need someone to talk to, contact me.  Anything said to me stays private, even from my husband. If you’re on Facebook, look me up. Same with Messenger. Just put the words There Is Always Hope in the subject line, so I’ll know it’s not spam.

If you have anything you’d like to share here, please feel free to add a comment. Thanks for reading and remember…

there is always hope