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/

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!

Brains!!! Braaaiiiinnnnssss!!!!

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OH, I bet that woke you up!!!

Today is the day I go for my brain scan regarding the hallucinations I’ve been having. It appears that they were related to the Seroquel as I haven’t had any since stopping that med and starting the Abilify (except for a short episode at the very beginning of the switchover).
Yay!!!!!
Plus, the Abilify has had no bad side effects other than some minor increase in hand shaking, AND it’s given me some extra energy and the INTEREST in doing things again, like crafting and helping around the house (I’ve been vacuuming and doing dishes when I’ve been physically able!!). What a miracle!!
The MRI will be helpful for the Neurosurgeon I’ll eventually see regarding my Trigeminal Neuralgia though, so it’s by no means a waste of time. When I go ahead and have the microdecompression surgery for the TN, he won’t need another MRI done. I see Dr. Winston, my pain doctor in August and we will do a referral at that time.
Let’s just hope they don’t find anything.  Wait, let me rephrase that.
Let’s just hope they find my brain looking healthy and well, with nothing unusual except where the TN is being weird. No tumours or growths or scar tissue that is ACTUALLY causing the Hallucinations (and the Jukebox is just needing a Fonzie)

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Actually, that would be kinda cool – having a Fonzie re-set button for your brain!!

Anyway, as always, your intrepid blogger (that’s me) will keep you posted on what happens but I’m not expecting bad news. We are talking about MY body though and we all know what that’s like. There’s always something new breaking down.

But we all know something else.

There is always hope!

Now run away before the Zombies get you….go…shoo!!!  🙂

Ranting and Swearing…Grrr!

Back in my post of Two Months Later…and counting, I mentioned I was having problems with my Achilles Tendon. Well, I finally made an appointment with a Physiotherapist to have it looked at, as the pain and tenderness has been increasing. And what did I find out? It’s not just tendonitis in the Achilles Tendon, oh no….I have to have Bursitis on top of it, AND it’s most likely there are tears in the tendon itself.
Fuck
Rod is the therapist I’m seeing, and he gave me all the information to explain his findings. He could tell via massaging the tendon and my reaction to the pain that it spread beyond the tendon and into the bursa as well. He did 20 minutes of acupuncture with 4 needles (what is it with me and needles???) and will do that for a few weeks, plus he showed me some stretches like calf raises and modified lunges he wants me to do, to stretch the tendon out. If I want a permanent solution though, he said it’s most likely that I’d need surgery to repair the tendon. Otherwise, the only other option is to just put up with the pain.
Like, I don’t already live with enough pain? UGH! Here Pam…have another heaping helping. Go on…there’s plenty more where that came from apparently. Plus I haven’t even dealt with my shoulder yet -I think I’ve torn the Rotator Cuff. I have an appointment in August to see Dr. Winston, my Pain Doctor, about that on a more official basis. I mentioned the pain last time I was there (for the Synvisc and Botox), as I couldn’t even put my right arm behind my back, and I still can’t. I can’t raise it above my head or beyond straight to the side – it just won’t move any further. And yes, there is pain. And numbness.
Who does this??? Who has a body like this, that just falls apart for no apparent reason???
I’m done. I am simply done. I am worn out physically and I’m sick and tired of things breaking down in my body. I’m scared to ask “what’s next” because there’s going to be a “what’s next” and I’m not sure I’m prepared to deal with it.
Oh yeah – I have my Brain MRI on Friday, June 22nd at 6pm.
Great.

There is always hope!