Controversial Debate

Welcome!
I want to get controversial today and I’m even going to throw in a disclaimer that this post is my PERSONAL opinion. I have no affiliation with any of the organizations mentioned within.
I was recently involved in an online Facebook discussion that got pretty heated. What was it about you ask? Well, let me ask you a question…
Is there a blood test to diagnose Fibromyalgia?
The answer is NO.
Is there a lab test to diagnose Fibromyalgia?
The answer is YES and NO.
WHAT????
How can there be both? Well, I’m going to explain it to you and when I’m done, you’ll see how wording can make you believe both things. Before I do though, I’m going to give you the correct answer. As of right now, today, there is NO blood test that definitively diagnoses Fibromyalgia. Not according to the Mayo Clinic, Johns Hopkins or any other leading hospital in the United States.
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First off, let’s get something clear about Fibromyalgia. Fibro is NOT an inflammatory disease. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord.
The big test that everyone talks about when they say there’s a lab test that DOES diagnose Fibro comes from EpiGenetics. It’s called the FM/a test and it shows some promise that it could potentially diagnose Fibro. They say it does that now, but I say in the future. This article from Healthline explains it in more detail but it’s important to note that more clinical trials need to be done before we can trust this test to be the definitive lab test we’re all waiting for.
Here comes your Science lesson. This FM/a test looks for chemokines, which are a family of small cytokines, or signalling proteins secreted by cells. Some chemokines are considered pro-inflammatory These are formed under pathological conditions (on pro-inflammatory stimuli, such as IL-1TNF-alphaLPS, or viruses) and actively participate in the inflammatory response attracting immune cells to the site of inflammation. But as I said above, Fibromyalgia is NOT an inflammatory disease…so how is this blood test going to be useful other than by process of elimination? And by that, I mean it’s going to rule out all the other diseases that DO have inflammatory responses, such as Lupus, MS, Rheumatoid Arthritis, etc.; basically, all the auto-immune disorders, which would have already been ruled out by the doctor through a regular panel of blood work.
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The way Fibromyalgia is diagnosed is by using the traditional Tender Point test. There are 18 tender points on the body of a person with Fibro:
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As indicated, having 11 of the 18 Tender Points is considered a positive diagnosis. This is the ONLY way Fibro is diagnosed, after all other possible conditions have been ruled out, such as arthritis, lupus, MS, etc.
This Tender Point test has been accepted as the gold standard in the medical community for years and will continue to be utilized until the medical community itself accepts a blood test as the new standard. That may be the test from EpiGenetics or there is one being developed based on RNA, not DNA, by a company called IQuity. They call their test IsolateFibromyalgia and you can read about it in this article.
EpiGenetics has developed their test and are marketing it aggressively, but it hasn’t been endorsed by the major hospitals like the Mayo Clinic or Johns Hopkins, etc. or by doctors who treat Fibromyalgia. It’s accepted in most States, as well as in Canada and several other countries. Insurance and Medicaid will cover it in the US, but I don’t believe there is insurance coverage anywhere else, so you have to pay $1080 for the test, plus possible shipping fees to their California Laboratory and it takes a week to get results. In my opinion, that’s a lot of money for something that doesn’t have the support of the medical community.
For people with all the symptoms of Fibromyalgia, one of the most complex of the Invisible Illnesses, in my opinion, the future could be looking a whole lot brighter a whole lot sooner than we think. Instead of having to rule out multiple other conditions, a simple blood test will be able to help your doctor determine if you have Fibromyalgia, which means treatment can start sooner rather than later. Who knows…perhaps once we have a test to determine if you have Fibro, it won’t be long before we have an actual treatment for it too! One that really works, not just masks the pain or other symptoms for a short period of time.
Your best weapon against Fibromyalgia and all Invisible Illnesses is education. Stay up to date with information from trusted sources like the Mayo Clinic, Johns Hopkins and Healthline. Labs like EpiGenetics are focused on their own work and will be biased toward their own product so be aware of what they’re saying and why. They have a product to sell you and that’s their agenda – to make a profit. Keep that in mind anytime you’re researching information and ask yourself; what’s in it for them and what’s in it for me. The answer to that question can save you a lot of grief and controversy.
Remember, there is always hope.

Wishing While I (Don't) Work

It’s Monday, and I wish I was at work.

Now a lot of you are probably thinking I’m crazy, and I am. While you’re getting up early in the morning to face the rush hour commute to go to a job you may not even enjoy, I could still be snuggled in my bed, fast asleep without a care in the world, right? Well, that’s the scenario you probably have in your head, but it’s far from the truth. As a Person with Chronic Pain (PwCP), I’ve probably been awake half the night because pain wouldn’t let me sleep; every muscle feels like concrete and every joint feels like someone has twisted it, put it into a machining vise and then clamped it three times tighter than necessary.

My brain hurts too…I want to be going to work with you. I loved my job prior to going on Long Term Disability (LTD) and the jobs I held before that. I was an Administrative Specialist at several different companies, mostly supporting Retail Operations and the people who managed the work; Directors, District Managers and Store Managers. In the past, I’ve worked for Rogers and Bell and my last company was The Forzani Group, now known as FGL Sports.  I supported the group that ran the former Sport Mart stores (now closed), but am still considered an employee of FGL Sports while on LTD.  I receive an employee discount and recently celebrated 10 years with the company.

I worked with an amazing group of people. I loved going into my job every day, knowing it was going to be challenging and fun and never knowing exactly what the day might bring. I organized team training events for Store Managers, travel and training for the District Managers, travel for the Regional Manager Rob Hillier and kept the Director, John Hould on track for his daily activities.

Then came the days when work started to become difficult. Too difficult. I had been doing all of this under the radar of Invisible Illness, which none of them knew about but it was starting to become an issue. Things that used to come easily to me became a struggle. I was famous for remembering things without needing a list and suddenly I was carrying notebooks with me because the Brain Fog was so bad. I would stop conversations in the middle of speaking because I forgot what I was saying. My pain levels were getting higher and higher but I refused to use a cane at work for my bad hip to ease the pain as I didn’t want to be perceived as being weak or incapable of being effective (this was prior to my right hip replacement). I couldn’t concentrate during meetings and even typing became a challenge – it still is to this day.

Once all the Sport Mart stores were closed, there wasn’t really a job for me any  longer, so the HR department encouraged me to go on Short Term Disability while I figured out my health issues. Short term became Long Term, and I never went back. My last day of work was in October of 2009. I started with the company in February of 2008. That’s right…I’ve been on Disability with FGL Sports for over four times longer than I worked for them. It was distressing for me to have to leave, because I loved the work and I was very good at what I did. My identity was wrapped up in my work and had been since I first started my career in 1991. When I found myself at home on leave, I didn’t know what to do with myself. I slept a lot in the beginning which was healing, but after that, I didn’t know what to do. I felt invisible, as I’ve discussed on this blog before. And being invisible can be a very painful thing. People accused me of not wanting to work, that this was an extended vacation for me, and that was really hurtful. If they could see inside me, they would know how very much I wanted to be back at my desk, with meaningful work to do. The mistake I made is that I didn’t go around complaining about my health at work, so no one knew how badly I was hurting except for a couple of select people in HR, plus my bosses John and Rob. 

I’ve asked my friend Tori Martin if I could share a quote here that she recently posted on Facebook and she graciously gave me her permission. This is what she said:

“STOP suggesting that people with disabilities of ANY kind just aren’t trying hard enough.

There are VERY few people who don’t want to work and contribute in a meaningful way according to society standards. Additionally, being able to work is NOT the ultimate measure of a person’s worth. Frankly, I am much more impressed at how a person treats others than what kind of work they do.I myself am unable to work due to physical limitations and it drives me crazy sometimes. Guess what though, I still have an incredible amount to give! I contribute to society through my photography, through having a huge heart that shows so much love and concern of others, through helping others, through occasional teaching of archery which helps many find confidence and enjoyment in physical activity. I contribute by paying taxes, voting, getting involved in local groups and causes and supporting local businesses. I am NOT a waste of space. And not that it’s anyone’s business, but I worked from the age of 10 until I was 39 and was literally bed-ridden for 2 years. My dr’s have been trying to help find ways of giving me back quality of life and things are so much better than those first two years, but nowhere near where they need to be to hold down even a part-time job. Telling people with mental or physical disabilities they have no worth if they can’t work is b*llshit and needs to stop. I am disgusted to have to say this after reading comments on a friend’s post. Apparently compassion and empathy is something that some folks just don’t have.”

 I think Tori really nails it with that comment. She lives with Rheumatoid Arthritis that really affects her hands and I know for a fact that she would love to be working if it were possible. Her friend John Hewak responded with this reply to her post: 

 “What makes it worse is that we feel the need to justify ourselves, due to both real and perceived judgement from others. People say things like “must be nice”, or “how can I get that?” Well first get f*cking sick, really sick, lose almost everything, navigate the tortuous health system, marshal up a posse of docs, specialist, therapists etc who validate you, get a lawyer, get on welfare, go through the painful application procedure and wait months to hear back while you sink into poverty. Most applicants are rejected first time . Repeat and rinse. If the institutional, bureaucratic, legal, and medical stars align, you might be accepted, in which case you get $1,000 to live on monthly., while you struggle with pain and alienation on a daily basis. Try that for a while. Wow, it’s so great not to work! Living the life of Riley.”

And finally, a third friend named John Poulson replied:

“I have found that people who give the most are the ones who have experienced hardship the most. People who have never experienced hardships have absolutely no idea or clue of what life really all about. It’s not about “things” but the experience you lend or give to others. Having compassion and showing that there are people out in the world that do care. Live; love; laugh. It’s the tears that makes one appreciate the good things in life. That’s my motto. ❤️❤️

It’s hard to be at home when you’d rather be out earning a living. Everyone thinks we have it so great, but when you’re housebound and feeling like crap, there’s nothing fun about it at all. We tend to be forgotten by our friends and sometimes our family members as well. We don’t get to go out and do “fun” things whenever we want – our time is generally taken up with Doctor appointments or physiotherapy treatments, etc. anyway.

So, to wrap this up, don’t forget your friend or family member who lives with Chronic Pain from Invisible Illness. Call them, ask to stop by for a visit, or to take them out of the house for a bit, whether it’s for lunch, or just a drive. They will let you know what they’re up for and how much energy they have. Even if they say no and they’d rather stay home, just keep in touch. That’s all we’re asking for. And don’t assume we’re being lazy. Trust me…most of us would rather be working if it were possible. 

At least I would. 

Remember…there is always hope. 

Chronic Pain Comforts

Welcome back!
When you live with Chronic Pain, whether it’s from Fibromyalgia, Osteoarthritis, Migraines or any other Invisible Illness, you want to find as many ways to be as comfortable as possible. You may or may not be taking pain medications, so sometimes the things on this list are the only things you rely on to get relief. You can find lists like these all over the internet, but I’m going to share my favourite ideas here. I won’t give you product names as there are far too many to mention and everyone has their favourite brands. I don’t tend to use all of these products myself, but many people do. If it works for you, great! If it doesn’t, don’t worry about it…move on and try something else.
Some of these things are for use at home, some are for taking with you when you’re out and some can be used in both locations. I like to have doubles of things such as Wet Wipes. They’re refreshing on the go or at home when bathing is a challenge and you need a quick clean up.
In no particular order:
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Heating Pad: Many people find using a source of heat to be extremely comforting. Just remember to take safety precautions with your skin, and never use a deep heating rub with a heating pad at the same time, or you’re asking to be burned.
Ice Packs: In much the same way as using heat, ice packs can be a lifesaver for pain. Some people with chronic pain use both at the same time…heat in one area and ice in another. Experiment with what works for you.
Eye Mask: When you’re having trouble sleeping, this can be quite soothing, especially if you prefer to sleep in complete darkness. It’s also helpful for Fibro induced migraines.
Ear Plugs: Again, super helpful to block out distractions to help you sleep better and to aid when Fibro migraines strike.
Epsom Salts: Soaking in a hot Epsom Salt bath is one of the best things you can do to soothe aching joints and muscles. There has been an explosion in Flotation Therapy lately in cities all over North America. People spend up to 90 minutes at a time in skin temperature Epsom Salt flotation therapy tanks, literally soaking up the benefits of this mineral. The ratio of Epsom salt to water in most tanks is such that many are more buoyant than the Dead Sea!
Magnesium Rub or Gel: Another essential mineral needed by the body, most of us are deficient. Using a good rub or gel can help alleviate pain. Ask your doctor if a supplement of Magnesium is right for you as well.
Pillows: Pillows for sleeping, pillows for propping, pillows for wedging, body pillows…wherever you need some extra support, finding the right pillow can be crucial to your comfort. Firm, medium or soft; feather or foam, whatever your preference is, you’re going for comfort, so let your body be the guide here.
Shower chair: If bathing is uncomfortable for you, but showing tires you out, consider getting a shower chair. They come in many sizes and shapes and can be found in lightweight, portable designs.
Kindle or e-reader: Take your entertainment with you or leave it at home, but always have your favourite books at your fingertips with an e-reader. There are many services that let you download books for free including your local library.
Body Lotion: Your favourite scent can help keep you smiling.
Magic bag/wheat pillow: These are the type of bag you can either microwave or freeze and use for spots on your body for various aches and pains
Scented candle: Some people find having scented candles burning helps them to relax. Try different scents according to the seasons or just choose your favourites.
Mints or Gum: If you tend towards having a dry mouth, you might want to keep mints or gum handy, or hard candies to suck on. I personally like Tic Tacs as they are small, come in lots of assorted flavours and are easy to pack in even the smallest of purses.
Colouring book: Currently one of the fastest growing trends to help relax you, there is an endless array of styles and designs to choose from. I have several on the go at any time, and use both pencil crayons and felt markers to colour mine. Jenny Lawson’s last book is part story/part colouring epic.
Herbal Tea: Even if you’re not normally a tea drinker, a good herbal tea at night (decaffeinated of course) can be a wonderful way to unwind before falling asleep. Many delicious flavours are there to choose from; I personally like fruity flavours the best.
Water to stay hydrated: Whether you use a water bottle or fancy decanter, having cold fresh water is essential in maintaining optimal good health for any condition. Make sure you keep it fresh by changing drinking the contents often.
Chocolate: Definitely an indulgence but if you’re not a fan of chocolate, at least keep a favourite snack nearby as a treat.
Fan: A small portable fan or a hand fan can help if you have trouble regulating your body temperature.
TENS Machine: Many people swear that using a TENS Machine helps with pain. I personally haven’t found relief with one, but everyone is different. Find out if you can rent one through a Medical Supply Store first before buying a unit, so you know if it will help you or not.
Portable Cane: A foldable cane can be super handy for around the house or outside if you find that sometimes you’re unsteady on your feet. They come in various colours and patterns so you won’t be stuck with “just” basic black if you want something to stand out with.
Essential Oils: These oils have long been thought to have medicinal purposes and many people swear by their properties. There are several good companies that market these and many more little independent companies to check out. Some carry a full range of products designed to use as a set and some carry individual offerings. Find what works for you.
Wet Wipes: The portable bath! When you need to freshen up but you’re just not feeling well enough for a proper bath or shower, wet wipes are the miracle bath.
Dry Shampoo: Like the above, dry shampoo is a spray/shake in, brush out helper for clean fresh hair without having to go through the full and proper wash and dry.
Favourite Pet or Stuffie: Everyone needs someone to cuddle!
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So there you have it, my list of essential comfort items when you need a little pick me up. Are there things you can think of that you would use? Share them in the comments so we can add them to our own lists.
Thanks for reading and remember…
there is always hope
 
 

Good Advice…

I want to share with you some valuable advice from another Pain Warrior. This is a person who lives with Chronic Pain from Fibromyalgia and his name is  Tom Seaman from The Mighty.  He just shared these thoughts recently and they struck such a chord with me that I had to share them with you.
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I used to blame myself for having Fibromyalgia and Chronic Pain and not being able to do things like everyone else. I figured there must have been something I had done in my past to cause it. I was a pretty rebellious teenager and did a lot of heavy partying, including drinking and drugs. I was in a very abusive relationship with my first “love”, the man who became the father of my two children. I have no doubt these things may have contributed to the stresses in my life, along with a huge and ugly surge of hormones when I started my period at the age of 13 (and turned from a normal young girl into a rage monster…no lie, you can ask my sister!).

As other stresses entered my life, my Chronic Pain got worse. So did my Osteoarthritis and my Chronic Fatigue. I was a single parent for a period of time and worried about my kids being on their own so much while I commuted three hours a day and worked at a job I loved. There were other relationships including a marriage that didn’t work out before I finally met my (now) husband Ray who is the finest man I could have ever hoped for. All of it took a toll on my health though, and I believe that a surgery I had in 2004 was the catalyst for my real downfall.

I had been suffering from severe Gastric Reflux Disease…GERD. I thought it was normal to eat a handful of Tums at a time and so had done nothing about my heartburn until Ray convinced me to talk to my doctor. She sent me for tests that showed I had a very severe form of GERD and recommended that I see a surgeon to have a surgery called a Nissen Fundoplication. It was named after the doctor who invented it, and basically what they do is take the top of the stomach and wrap it around the bottom of the esophagus, effectively preventing anything from backing up into the esophagus again. This means no more acid reflux and no more heartburn. It also means you lose your ability to vomit, so if you ever come down with the flu or become pregnant, you are in huge trouble. If you are dry heaving or attempting to vomit, the strain on the Fundoplication can stretch it enough that it loosens so you do bring up the contents of the stomach, and need to have the surgery redone. In my case, I need to go to the hospital and have an NG tube placed down my nose and into my stomach to empty the contents…a procedure I’ve had done 3 times now, so I’m a pro at swallowing the NG tube now.

I went ahead and had the surgery, and for what it was done for, it worked extremely well. I’ve had no problems with heartburn except a very rare exception every now and then. Unfortunately, I suffered nerve damage in my sternum area where an incision was made to hold one of the instruments in the surgery and which caused me tremendous pain for many months afterwards. I was drugged up on morphine pills (plus pills for nausea and itching) for so long that my friends could barely recognize who I was. It got to the point that I had to be hospitalized to wean off the morphine because I was hallucinating that I could hear a band playing, and I kept looking behind my computer to try and find them. The doctors were at the point they were going to crack open my chest to try and find the problem when the Thoracic Surgeon suggested trying Gabapentin for nerve damage and it worked. Unfortunately, that 11 months of pain and misery put me into such a Fibro flare that I don’t think I’ve ever properly recovered from it.

I went into quite a depressive spiral during that time. I was off work for months…I tried to go back but had to take more time off. I missed working…it’s always been my passion and to not be there with my team was hard. I was missing church and my Lifegroup, and missing my friends and times of social gatherings…I was just miserable. Eventually, I got better – well enough to go back to work, etc. but I’ve never felt 100% again. A year later, my body decided to go rogue on me and I ended up in 2006/2007 having 3 separate surgeries in a 6 month period of time; my left ovary burst, my gallbladder gave out and then my right ovary burst, putting me into surgical menopause (I’d had my uterus out at age 28). That in itself was traumatizing, so again, my Fibromyalgia kicked into high gear and I was flaring badly. I had one more surgery in 2007 that actually had to be cancelled while I was on the operating table as the Anesthesiologist couldn’t find a vein for the IV. I have tiny crappy veins and I’d been left waiting all day without liquid. No wonder.

So, my poor body went through the wringer during that period between 2006-early 2008 and I blamed myself so much. I don’t know why, there was nothing I could have done to prevent anything, but still…it just seemed like I was constantly ill or recuperating and I was never able to go out with Ray when he wanted to. All I wanted to do was sleep or rest and I felt like the worst wife in the world. All the chores were left for him, I had no energy to do anything…and yet he never once complained. He truly is the most remarkable man, and I know God picked him especially for me. Ray takes the best care of me and I am so grateful.

When I read the words that Tom Seaman posted, I was reminded of all of this all over again. It’s easy to get into a “blaming yourself” mindset but nothing we’ve done is our fault. Fibro picks its own victims (ooh, I hate that word) and we have to live with the consequences. I know we all try our best to live with it and make the most of life, but we have a tendency to try and fault ourselves I think. We feel guilty that we can’t be there for our families, our friends, our employers, our volunteer work. We drop hobbies and things we enjoy because we just don’t have the energy to do them anymore. We see others picking up the slack for us, and there can be a sense of shame. And often, we retreat because depression kicks us hard.

Today, I say NO MORE!  We have been dealt an ugly hand, but IT IS NOT OUR FAULT. If you are feeling these feelings of guilt, shame, anger, depression or other negatives, STOP. Nothing you have done has caused your Fibro. If you are living with Chronic Pain or Chronic Fatigue, accept it. It is what it is. You can’t change it so you have to accept it. The only other alternative is to wallow in misery and I don’t think that’s an acceptable alternative…and neither do you, honestly. Take Tom’s words to heart, and my words too…

THERE IS ALWAYS HOPE!!!!

the first post…

Well, here it is. The first post on my new blog “there is always hope”. I’ve decided to start a blog to share my experiences with having an invisible illness (or in my case, illnesses), as well as to document my journey through having a Total Hip Replacement. Thanks for joining me!
My name is Pamela. I’m 54 years old, living in Victoria, BC (Canada) and married to the most amazing hubby a gal could ask for. Ray has been by my side since we first connected in 1994, through a telephone dating service, back before the internet was even a thing. We hit it off immediately and after chatting for 6 weeks, finally arranged to meet in person. He cooked an amazing dinner, I made a fabulous dessert, that first date lasted for 3 days and the rest, as they say, is history.  😉
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I have 2 children from a previous relationship. They are now adults – Troy is 34 and lives in Calgary and Ashley is 33 and lives in Vancouver. Ray and I are also grandparents to three cool boys – Eric (17), Jeddy (15) and Calen (11).
For as long as I can remember, I have always had some type of pain in my life, generally in my hips. Even back in my elementary school days, taking part in Phys Ed was tough – a lot of the stuff we did left me hurting so bad for days afterward, I just knew it wasn’t “normal”. I saw doctors, who basically said it was growing pains, but when you top out at 5’2″ as an adult, I tend to think that might not be the right answer. Something else we checked into related to a condition I was born with, called Brachydactyly. I have bone missing in my ring fingers and corresponding toes, which makes them much shorter than they should be, and there’s improper knuckle formation as well. But, no…that didn’t seem to add up either, so basically, doctors had no answers and I was left to deal with it.
I learned to cope with it – it wasn’t agonizing or ruining my life, it was just different than what everyone else seemed to experience. Now of course, when I look back on it, I can see that I likely had Fibromyalgia as a pre-teen/teenager and may have been developing osteoarthritis at an early age as well.
Fast forward to adulthood though and the health issues are a lot more complex than “growing pains”. The list is long, but it’s all a part of who I am:

  • Fibromyalgia
  • Osteoarthritis in most of my major joints
  • Myofascial Pain
  • Trigeminal Neuralgia
  • Diffuse Idiopathic Skeletal Hyperostosis
  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Raynaud’s Disease
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain

  • Diabetes Type 2 (on insulin)
  • Bipolar Disorder

I haven’t had a pain free day in so many years, I don’t think I can even remember back that far. In 2004, I had surgery for severe Gastric Reflux disease, which led to some nerve damage around the sternum area. Over the following few years, I have several other surgeries and hospitalizations, including having my left ovary removed after a cyst burst (2006). Then my gallbladder had to be removed in an emergency surgery (2007) and 2 months after that, my right ovary was removed, again in emergency surgery (2007). Those last three surgeries all happened within 6 months….my body was completely overwhelmed and I went into a major Fibromyalgia flare up that I don’t think has ever completely gone away. My daily pain is generally a 4-5 on the pain scale – and that’s with me taking various pain medications and other drugs, and using pain management techniques. I don’t know if you’ve seen the various pain scales out there that doctors use to judge the level of pain you’re experiencing, but let me introduce you. This is the standard doctor’s chart:
Standard-Pain-Scale
This is the chart that people who suffer from chronic pain prefer to use:
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Thanks to Allie Brosh from Hyperbole and a Half for this – here’s the link to the post it originated from: Pain Scale
So, this is the first post of what I hope will be many, to share my journey of living with Chronic Pain and Chronic Fatigue. It’s about living with Invisible Illness and often having to prove that yes, there’s a reason you use a handicap parking pass. And it will become a journey of having a Total Hip Replacement at a relatively young age (haha!), because I couldn’t find a whole lot of personal experiences when I searched Google. I’m the curious sort – I like to know how other people’s experiences have been. I know the clinical stuff…what I want to know is the real-life stuff that patients experience. I’m passionate about that, and I’ll tell you more about that and why in another post. Until then…thanks for reading, and remember…
there is always hope
Pamela