10 Things I’ve Learned About Chronic Pain

If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.

The author showing various pictures of her face in pain

My many faces of pain

I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.

1. THERE IS ALWAYS HOPE

No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.

2. A GOOD DOCTOR IS TO BE TREASURED

Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain?  Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.

My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.

5. DID I MENTION, THE PAIN NEVER GOES AWAY.

Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.

8. SLEEP IS A VERY GOOD THING

Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.

9. WE ARE ALL WARRIORS

Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.

10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS

For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.

I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.

CONCLUSION

I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,

There is always hope

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Gastroparesis Is A Slow Go

One of the many conditions I live with is called Gastroparesis. Gastroparesis means paralysis of the muscles of the stomach. Gastroparesis results in delayed emptying of food from the stomach into the small intestine. It can be minor or quite severe; in my case, I have a moderate degree of paralysis, and the food sits for 2-3 days before being processed further in the digestive system.

feat-gastroparesis

I wasn’t aware there was a problem at first as the usual signs of Gastroparesis are nausea and vomiting. I didn’t suffer from either of those, but I did experience a lot of bloating. It felt like whatever I ate just sat there in my belly forever.

Some of the causes for Gastroparesis include:

There are many symptoms of gastroparesis, including:

  • Heartburn or GERD
  • Nausea
  • Vomiting undigested food
  • Feeling full quickly when eating
  • Abdominal bloating
  • Poor appetite and weight loss
  • Poor blood sugar control

Some of the complications of gastroparesis include:

  • Food that stays in the stomach too long can ferment, which can lead to the growth of bacteria.
  • Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine.
  • People who have both diabetes and gastroparesis may have more difficulty because blood sugar levels rise when the food finally leaves the stomach and enters the small intestine, making blood sugar control more of a challenge.

HOW DO THEY TEST FOR GASTROPARESIS

To diagnose gastroparesis, your doctor will review your symptoms and medical history. He or she will also give you a physical exam and may order certain blood tests, including blood sugar levels. Other tests used to diagnose and evaluate gastroparesis may include:

  • Barium X-ray: You drink a liquid (barium), which coats the esophagus, stomach, and small intestine and shows up on X-ray. This test is also known as an upper GI (gastrointestinal) series or a barium swallow.
  • Radioisotope gastric-emptying scan (gastric scintigraphy): You eat food that contains a very small amount of radioisotope (a radioactive substance), then lie under a scanning machine; if the scan shows that more than 10% of food is still in your stomach 4 hours after eating, you are diagnosed with gastroparesis.
  • Gastric manometry: A thin tube that is passed through your mouth and into the stomach measures the stomach’s electrical and muscular activity to determine the rate of digestion.
  • Electrogastrography: This test measures electrical activity in the stomach using electrodes placed on the skin.
  • The smart pill: This is a small electronic device that is swallowed. It sends back information about how fast it is travelling as it moves through the digestive system.
  • Ultrasound: This is an imaging test that uses sound waves to create pictures of body organs. Your doctor may use ultrasound to eliminate other diseases.
  • Upper endoscopy: This procedure involves passing a thin tube (endoscope) down the esophagus to examine the lining of the stomach.

I underwent the Radioisotope gastric-emptying scan. 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.

DAY OF TEST

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 the sandwich, 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 my Doctor 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 to exercise a bit more.

If you’re experiencing symptoms of Gastroparesis, please make an appointment to see your family doctor as soon as possible. There are treatments available and you won’t have to put up with the suffering. Thanks for reading and remember…

There Is Always Hope

Refresher Course

I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:

  • 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
  • Hypothyroidism

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.

Diffuse-idiopathic-skeletal-hyperostosis-DISH-of-the-spine-grave-290-male-50-60-yrs

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.

My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.

My Trigeminal Neuralgia is something I’ve talked about before so you can read the article about it here.  The same goes for my Bipolar Disorder.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis

what-is-gastroparesis

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 to having to feel better in order 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 my doctor 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 to exercise a bit more.

The Internal Pelvic pain is because 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.

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!!! My doctor 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!!

So there you have it. 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. Suffice it 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, intractable 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’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.

One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.

I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.

Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.

So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…

There is always hope

A New Piece Published!

Wow!
I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.
Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!
Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!
I’m so excited and I’m really damn proud of myself!
https://www.painnewsnetwork.org/stories/2018/8/8/grieving-a-former-life
There is always hope!

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.


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, intractable 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!

Fibromyalgia and Online Support Groups

Welcome Back!

I belong to an online Fibromyalgia Support Group. I spend so much time on the computer that it made sense to me to find a support group online as well. It’s run by a lady named Catherine and has members from around the world – Australia, England, Canada, and the USA.

It’s a super supportive atmosphere and the one thing we are very clear about is that none of us are doctors and we are not there to dispense medical advice. We can talk about what does and doesn’t work for us, and our own medical experiences, but we can’t diagnose you based on YOUR symptoms, as Fibromyalgia can have SO many symptoms, it would be impossible to try.
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One of the so-called “tests” used to determine if you have Fibro or not is the 18 Tender Points as shown here:

FibroSymptoms2So you can see why Support Groups are so necessary when you live with Fibro, or really any disease that causes Chronic Pain, such as Osteoarthritis, Rheumatoid Arthritis, Lupus, Ehlers Danlos Syndrome, MS and more.
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Well, I joined a new Fibro support group a few days ago, and just had the most interesting experience. Yesterday, the Leader of the group “diagnosed” a member with a symptom she was experiencing (bloating and constipation) and told her she had “Leaky Gut”. I suggested that she shouldn’t diagnose, and what if it was something else, such as Gastroparesis?

My goodness, did I ever get a pissy response!!!! I took screenshots (which I won’t post here), but I ended up just leaving the group. I was told that this woman has 25 years of living with Fibro, she’s done years of research with top doctors, and she knows what she’s talking about. Apparently, this woman is determined that the only way to resolve Fibro is with Bovine Colostrum and a Chiropractor. Now, I’m willing to try the Bovine Colostrum to see if it helps, but you DON’T diagnose someone definitively, EVER. It’s even in her rules, which I quoted to her, which made her even angrier!!

And not only that, how dare I suggest Gastroparesis and the radioactive tracer test that would diagnose that because that would make this lady’s “Leaky Gut” even worse. FACEPALM (yes, she really put the Face Palm Emoji in there).

And not only THAT, how dare I tell her what to do in her OWN GROUP. She’s never been angry before, I’m the first one in the whole ten months to upset her, blah blah blah blah blah blah (yes, I am that talented!!)

So, I told her I was leaving the group because I obviously couldn’t state my opinion without being attacked, she couldn’t follow her own rules, and I don’t need that kind of energy in my life. I reiterated that it’s okay to suggest possibilities, yes, but you never tell a person that what you suspect they have IS what they have. That’s just being irresponsible. Then I called her an @ss and left. Oops!!

There is always hope.