Elephant in the Rheum

Sorry the elephant has been hiding...

2015-07-23T12:42:00.002-04:00

In my mind there are always so many things I WANT to do. But then reality kicks in, fatigue kicks in, pain kicks in. Life is a never ending list of priorities and something always has to give. One of those things was this blog.

To sum it up, 2014 and 2015 have been rough years. Disappointment, sadness and stress have been the name of the game.

I still look for inspiration and hope from my fellow rheum-mates and spoonie friends. I have only been watching from the sidelines, rather than being the engaged patient I have been in the past.

So today I let you know I'm here, and that I have just been sitting quietly, I thank you all for sticking around!

I leave you with this thought...

Pain, pain go away, come again another…

2014-09-19T13:47:00.001-04:00

Well, never!

I never thought that chronic pain would be my new normal. I hurt almost all the time. And when I don’t hurt it always surprises me and catches me off-guard. Drugs can control my inflammation and swelling but the constant aching and hurt never really go away.

Like so many diseases, chronic pain is just part of the package. Pain is almost always included in the deal.

That’s why when Canada AM did an interviewed with Lynn Cooper and Dr. Angela Furlan this week, I was so grateful. Grateful that people are starting to talk about the kind of pain that exists 24-7. The kind of pain that Tylenol or Advil laugh at, the kind that make getting through each day challenging.

Check out the Canada AM interview here: Chronic pain: With a plan, it is possible to live well

Ms. Cooper is the president of the Canadian Pain Coalition and because of an accident she has been living with chronic pain for 25+ years. She now suffers from fibromyalgia and migraines. Wow! That’s a whole lot of hurting for a long, long time. And yet she is well spoken, calm and appears comfortable. Can she really have chronic pain?

She said so many things that really hit home. She talks about being a really good patient always doing everything the doctors told her to do. Sometimes you think, if I do as I’m told, take the drugs I’m prescribed, then it was all magically go away. Years of being a guinea pig myself, I can say that isn’t the case when it comes to my pain.

Only after she realized and accepted that the pain was going to be part of her life, was she able to learn how to best manage it.

Dr. Furlan, helps explain the different kinds of pain. There is good and bad pain. Pain can be very useful when it's acting to alarm the system, when it's there to alert someone that something is wrong with the body, when it's telling you it may be time to seek medical attention.

But with bad pain, the alarm system is broken. She used the analogy of the alarm system in your home. Imagine someone is breaking into your house, and your home alarm realizes this and alerts you that danger is possible. The sirens go off, the police are notified. The impending break and enter has been averted. The alarm system did its job!

But what if, the alarm keeps going off and each time you check and double check but there is no reason for the alarm to go off. Something is wrong with the wiring or the sensors but there is no imminent danger. It’s just a big nuisance that keeps you up at night. This alarm (or pain) serves no purpose. It’s a “malfunction”. The repair people (health care professionals) look and look for a cause of the alarm but they never identify the problem. At least with your home you could get a new alarm system, or switch to a new provider or simply disconnect the system. But you can’t get a new body to stop the pain alarm from going off. Right?

Chronic pain is a broken pain system. The parts needed to repair it appear to be permanently "out of stock".

Ms. Cooper talks about the need to develop pain management plans, coping strategies, having a support system of family, friends and health care professionals and learning to prioritize and pace yourself so you can still do the things you love. She stresses that you must “do something that gives you joy, each day”.

Hmm... could she be counting her spoons?

She ends the interview by saying something so important. “You would look at me right now and not know that I am in pain but I am. Yes I am, very much in pain.” Remember how I said how calm, collected and poised she appeared? Looks can sure be very deceiving.

You can't see pain, but I can assure you it’s very real.

I had no idea I was a SPOONIE!

2014-09-10T13:16:00.000-04:00

(I would be a hypocrite if I didn’t submit my own story into the Super Spoonie Story Swap – so here it is!)

It wasn’t until I realized that my RA was for real that I sought out virtual support. I was scared, worried, and a whole bunch of other unhappy emotions and I knew I needed to reach out.

I started with Facebook, I joined the odd RA group here and there. I picked groups that were closed so if I did decide to post something my FB friends would not know. I did that for about a year. They helped a little but I needed more.

I decided to try Twitter. People seemed to like it. But I wanted to be anonymous yet my true self.

I pondered a long time about what to call myself. Then ‘out of the blue’ it came to me. I will be known as “The Elephant in the Rheum”. It explained how I was feeling. My RA is there, in all its glory, yet no one is talking about it (including me). So I would be known as @ElephantRheum.

I had to Google how to use Twitter since I had NO idea. I had to learn about hashtags, retweets, favorites and all about those #FF (follow Fridays). Plus the multitude of short forms needed to make those tweets fit into 140 characters.

My first follower was @HurtBlogger (also known as Britt Johnson). I followed back, Twitter etiquette said I should. I’m sure glad I did. I’ve since learned she’s an amazing advocate for patients and doing it all while living with a chronic illness. Awesome!

So, one by one I found new people, like me, to connect with (plus the odd spammer too!). I was forming a community!

I started looking more closely at the people that were part of this new Twitter community. That’s when I started to notice the hashtag #Spoonie. It was usually listed after ones I could figure out like #RA, #Lupus, #Fibro etc. I just figured it was a rare or new disease and moved on (rare and new but somehow EVERYONE had it?!?). Then I started to notice it in people’s tweets. Spoonie this, Spoonie that. It was popping out of the page EVERYWHERE.

It started to bother me. I had to know! If I’m going to follow the lives of people with ‘Spoonie’, I’d better figure out what it is. So I Googled it.

I was SO wrong. It was not one disease, it’s not even A disease. It’s a metaphor for those living with chronic illness that are given a limited set of spoons each day to complete their daily activities. A pseudo-energy currency. Ohhh I get it! A Spoonie is someone that lives by Spoon Theory.

It was in that instant I realized that I was in fact a SPOONIE! It was all starting to make sense.

I stumbled across, #spooniechat, led by Dawn M. Gibson (@DawnMGibson). For a couple hours each week you can connect with your fellow Spoonies. You can help and support others who are having a bad week or just air your dirty laundry (always a hot topic! Haha – literally I mean actual laundry – check out #spooniechat for yourself to find out what I mean).

I learned to love live tweetchats. Engaging in real time! Not post something, and wait and wait until someone says something back to you, if they ever do at all.

I have since learned there are other awesome tweetchats. Lurk, participate, it doesn’t matter as long as you are respectful. My favs are #MedX, #hcdlr, #hcsm just to name a few. You just say what’s on your mind and go from there.

Another thing I learned is that many Spoonies have their own blogs. They use the power of the written word to express how their chronic illness affects them. I pondered for a long time about starting my own. It was @abrewi3010 (Alan Brewington) that urged me to just go for it. Thanks Alan, I did.

I have learned that being a Spoonie, isn’t a bad thing, it’s just a reality. And with it comes the opportunity to band with others, to share, to connect, to heal.

So many Spoonies I now think of as my virtual family.

Being a Spoonie wasn’t my choice, my stupid immune system decided that for me. But being a Spoonie means I am automatically entered into the Spoonie Club which makes being chronically ill a wee bit better.

Thanks!

(This is my entry into the Super Spoonie Story Swap - Helping to Build a Spoonie Blog Network.)

Brain fog or Writer's Block?

2014-09-09T16:51:00.000-04:00

Join the Spoonie Blog Network today!

Patients telling THEIR stories!

Read all the details!

Check out the Network Index!

Do you write your own blog?

Have you written a post you would love to share with others?

Then use the Submission Form!

And tell us where to find your blog/post!

I'm looking forward to reading and sharing your stories!

We can learn a lot from each other!

The Network is Now Available

2014-09-03T14:52:00.002-04:00

The first submissions on the Spoonie Blog Network are now available.

Have a look, and let me know what you think! Most important beginning reading your fellow Spoonies stories.

Enjoy!

New Submission Form for the Spoonie Blog Network

2014-08-31T15:11:00.000-04:00

I'm still learning how to make this project user friendly for everyone.

Trying to keep things Spoonie Simple!

I have a new Submission Form that works must better than the original one I had set up. (I hope).

Remember if you do have problems using the Submission Form you can always email them directly to: elephantintherheum@gmail.com

Thanks! And keep blogging!

Building a Spoonie Blog Network

2014-08-28T14:49:00.000-04:00

This September everyone is invited to join the:

SUPER SPOONIE STORY SWAP.

What is it?

It's a way to connect the Spoonie community, so we can support each other, learn from each other, one blog at a time.

If you are living with a chronic illness you already know that you need to carefully plan your daily activities to avoid over exerting yourself, this is what makes you a Spoonie.

The term Spoonie originated from the Spoon Theory by Christine Miserandino. If you haven't read it before, I highly recommend it! Does the story sounds familiar to your own life? Then I welcome you to the Spoonie club.

All Spoonies have a story to tell, so why not share it! And share it with people who understand and can support you. Through good days AND bad days.

I find inspiration and comfort reading about the journeys of other Spoonies. I have found so many wonderful blogs (and people), and I know there are many more great ones out there just waiting to be discovered. It's always nice to know we are not alone. Our disease may be invisible but we don't have to be.

MY MISSION:

To create a blog network just for SPOONIES!

(My long term goals are at the bottom)

You can get involved in the SUPER SPOONIE STORY SWAP by either being an author or a reader or both! No pressure!

Links to all submissions will be displayed here:

So here's how to get involved!

Want to be an author?

It's simple. Write a blog post about what it means to YOU to be a Spoonie. The ups and downs of YOUR Spoonie life. (This is our first topic for the Super Spoonie Story Swap just to help get the network started).

There are no limitations. No minimum or maximum word count. Use words, pictures, videos. We are limited enough by our disease and this is one time for you to be free to say how YOU feel with NO JUDGEMENT. The most important RULE (if you can call it that) is to just be YOU.

Be sure to mention that you are taking part in the SUPER SPOONIES STORY SWAP to help spread the word and help build our Spoonie Blog Network.

Even better put this logo somewhere in your post/blog:

To submit your story please visit the submission page. There's more details/instructions there too!

Things to know about submission:

Once your entry has been received and processed, a confirmation email will be sent to you.

This email will also contain a link to your entry as it appears in the Spoonie Blog Network.

If you are a blogger, anyone who wants to read your submission will always be linked to your own blog. After all it’s YOUR story and this will help introduce others just like you to your own blog and build your own reading community.

If you are a non-blogger, that's okay. I have a special page on the Spoonie Blog Network just for you. If you decide in the future you would like to start your own blog, just let me know and I will adjust your submission to link back to your new blog!

Want to be a Reader?

Here's where you can find the list of submissions:

See an entry to like, just click the link! Read it, enjoy it, comment on it, and even share it. Be sure to let them read your own story too! Feeling inspired? Why not write your own post!

Submissions on Topic 1 will be received up until September 30, 2014. This is help me get this project set-up, there will be lots of opportunities to join in later, but hey why not be one of the first!

MY LONG TERM GOALS

Please, remember that this is a startup project and the look and feel of the Spoonie Blog Network may (and will likely) change as I learn how to best meet your needs. Afterall, we are building a Spoonie network ONE blog at a time.

Eventually, I want blogs and their post to be easily categorized and searchable. So when you want to read about someone else's experiences with a particular illness or with a certain situation you can easily find it without the hassle of Googling over and over and turning up empty-handed. A one stop place to find the information YOU need.

Each time you write a new blog post. Let me know, and I will add it to the Spoonie Blog Network. It's that simple.

The elephantintherheum.blogspot.ca serves only to organize and centrally locate all links to entries provided during the creation of the Spoonie Blog Network. However, elephantintherheum.blogspot.ca will not be responsible for misinterpretation, misrepresentation of any entries and their associated blogs as outlined in the disclaimer for elephantintherheum.blogspot.ca. If you have any questions/concerns please email: elephantintherheum@gmail.com

The Super Spoonie Story Swap is coming...

2014-08-28T11:16:00.002-04:00

All the details will be posted later today.

Please stay tune and check back later, or better yet:

Subscribe to my blog

Follow @elephantrheum on Twitter

Like my page on Facebook Elephant in the Rheum

To be one of the first to hear all about it!

My Super Spoonie Project

2014-08-19T12:53:00.002-04:00

I'm working on a great new (my first) Spoonie centered project. I'm just in the midst of finalizing the details.

All will be revealed next week. (The suspense is building! I can feel it. I'm over the moon with excitement).

It's going to be SO great to give back to the Spoonie community. They are such an inspiring and amazing group that are living with the adversities of chronic illness.

Here's a sneak peak...

Be the first to hear all about it!

Subscribe to my blog
Follow @elephantrheum on Twitter
Like my page on Facebook Elephant in the Rheum

Dear Chronic Disease

2014-07-31T20:24:00.002-04:00

Sorry, readers I have been MIA. Turns out summertime leaves little time to blog.

But here is another one of my poems to hold you over.

Enjoy!

THANK YOU!

2014-06-27T10:52:00.001-04:00

THANK YOU AND HAVE A GREAT SUMMER!

TAKE IT EASY TUESDAY!

2014-06-24T10:26:00.000-04:00

I am declaring today “TAKE IT EASY TUESDAY” and spreading the news on twitter using #takeiteasytuesday.

The past month or so has been crazy. I am truly amazed and very thankful my body allowed me to do so many normal things. I celebrated my 40th birthday, attended parties, hosted parties, I was even able to keep up with my kids at school events and organized a kid’s birthday party. I somehow think I must have won the spoon lottery.

But today, my body, has given me a gentle reminder that I need to slow down and rest up. And I know that it is OKAY to have a day of rest and relaxation. No guilt, just accepting that my body needs a break so that I can continue to be ‘normal’ every once in a while.

So everyone please join me today (and every Tuesday) by taking it easy! Spread the word!

Looking Beyond...

2014-06-11T20:09:00.002-04:00

Germaphobe or Germ-aware?

2014-05-29T10:25:00.000-04:00

Last week was very nerve wrecking.

Three weeks had passed since my last dose of antibiotics and I was given the green light to start taking my biologic again. I could welcome back my immunosuppressed life. YAH!

Wednesday was supposed to be my big re-launch day; however, big surprise, I managed to be 'too busy' to self-inject. Then, Thursday rolled around and I knew I shouldn't delay anymore. So I made the first big step, I took the syringe out of the fridge! There was no turning back. I set the timer for 30 minutes to allow the immunosuppressing drug to reach room temperature. My nerves kicked into high gear. Every situation of 'What if' was being envisioned in my head. My mind was playing good cop, bad cop.

Good cop: Get a grip! You can do it. Nothing is going to go wrong. It will help you get better.
Bad cop: Remember what happened last time? Do you? Do you?

So with my nerves on high alert, I did want any good autoimmune patient would do - I prepared to inject. I got out my alcohol swab, gauze, band aid, filled out my biologic journal with my pre-test information (temperature, heart rate, overall health etc.).

Then the timer went off, it was injection time! I washed my hands, and boy did I scrub, in fact, I rinsed and then repeated just to be sure. It was like I was preparing to go to surgery. My hands would NOT be the source of any future infection. I chose my injection site; my left thigh seemed like a good target, cleaned it with alcohol and took a big deep breath. Removed the cap off the pre-filled syringe and, as noted in my instructions, with a ‘quick, dart-like motion’ inserted the needle into my pinched skin. I pushed the plunger all the way down until I heard the CLICK, the needle was safety inside the needle guard.

I was done.

I took it easy and distracted myself with a combination of social media and Netflix. (My mind has a tendency to wander into that dark zone of worry.)

The next day, I ventured out into society and I was quickly reminded that I need to be Germ-aware. However, I think I might have crossed the line over to becoming a Germaphobe.

While waiting in line to get my driver’s license renewed, there was the 2 year old kid with the snotty nose sitting next to me. Green/yellow discharge was coming out of both of her nostrils. I kept thinking, "Stay away, STAY AWAY!".

Then the mother wiped the kid's nose and I continued to analyze the consequences of this situation, "I hope she washes her hands before she touches anything".

Then there is the public washroom, I had to go in when my 4 year old who had to go potty. Those rooms are germ incubators! As my daughter touches everything, I freak out and ask her to stop doing that. There are lots of germs in here. After she is done I not only thoroughly wash her hands, I use this opportunity to thoroughly wash my own hands too.

Then there is the man who didn't cover his mouth when he coughed. I repeated to myself over and over, "Don't touch your face, don't touch your mouth, don't touch your eyes and you will be okay".

Then there was the woman, sitting next to me coughing repeatedly. Thankfully, she covered her mouth properly, but I found myself thinking "I sure hope that's a smoker’s cough. Please, please, please!".

Next stop, the drug store, I quickly added a travel sized bottle of hand sanitizer to the list. I used to despise this stuff, however, now I search them out when in public.

All of these situations reminded me of a Rick Mercer skit from years ago. I giggled to myself as it played over in my head.

I never used to freak out like this. Even when I first started taking a biologic, I maintained sanity. I am no stranger to microbes, back in the days as a scientist in a research laboratory I handled pathogenic and nonpathogenic bacteria, viruses and fungi. I had excellent technique and was completely reasonable. Although my days of lab work are temporarily on hold, complements of my RA, I thought I had maintained some common sense. Apparently not.

When I used to teach microbiology to second year university students studying a health related field, I used to say "a little dirt doesn't hurt". I still believe that mantra, however, I think I have just modified it slightly. It doesn't hurt the normal, healthy general population but for those who are immunosuppressed I think sometimes the dirt might hurt if we aren’t careful. We must be rational and diligent.

After much reflection about my paranoiac episode after re-starting my biologic, I think I was within what is deemed ‘normal’ in light of recent events. However, I think that to be germ-aware is a healthier approach. We have enough problems without adding a fear of germs. Don’t lose your common sense.

Say it with me... "I will be germ-aware; I will not let the fear of them control me".

Slow and Proud!

2014-05-28T10:27:00.000-04:00

Emergency Preparedness

2014-05-20T13:38:00.001-04:00

I always knew that getting an infection while taking a biologic was a real possibility. I thought I had asked all the right questions to know exactly what to do if I suspected some sort of germ had taken up residency inside my immunosuppressed body.

I remember asking my rheumy the "game plan". She explained that any kind of fever/infection needs to be taken very seriously and to see a doctor immediately. Never take your biologic if you feel unwell, have a known infection or a fever etc. And stay off your biologic until you are better, and if you need an antibiotic always talk to your rheumy before starting back on that biologic. I remember asking the nurse who trained me how to inject my first biologic what the “magic” number was to be considered a fever, a fever that was high enough to seek medical attention. She said 38oC.

I had mapped out the game plan repeatedly in my head. And you know what? Things always went smoothly. I had my emergency plan in place and I was prepared.

Not exactly…

I learned that no matter how many times you have practiced you cannot control the world. Remember those fire drills you had in school? Pretty routine and everything always went smoothly. But if the school was actually on fire I bet it would be pure chaos. That’s how I felt.

So here goes my story about my first infection while taking a biologic. I have lost count of the number of times I have relayed this to doctors (yes it is plural), nurses, residents, the biologic helpline, family and friends. And now I share it with you, and I’m guessing you probably have a better appreciation for all the emotions that I had during this landmark moment in my life.

It was a Thursday, my designated day for my weekly injection of Orencia. It was also the Thursday before Good Friday. It was a long weekend, and even my folks were making the trek to visit us. I felt good, I did my usual pretests. How do I feel? How’s my heart rate? What’s my temperature? It was all good. So I did it! I injected.

In fact, I even noted at the end of the day how good I felt. I had something I hadn’t had in a while. ENERGY!

I even tweeted about it!

Near bedtime, I started to get the sniffles. It’s springtime and pollen is in the air, so I really believed it was just my seasonal allergies.

I woke up the next day, Good Friday, and had a huge headache and it was definitely not allergies. It was a stupid cold (so I thought). I took some Tylenol for the headache and just took it easy until my parents arrived. Around lunchtime, I started to get the chills. So I did what any paranoid immunosuppressed patient does, I took my temperature. Hmmm…. It was approaching 38oC, I’d better keep an eye on that. I continued to check my temperature and my temperature continued to rise, eventually I passed the magic number of 38oC. Of course, it was a statutory holiday and calling either the family or rheumy doctors was out of the question. I called the Orencia helpline and they had also taken the day off. Great. By then my parents had arrived. I didn’t know what to do. My mom made the decision for me. We were going to emergency.

I was evaluated by the Triage nurse. I explained that I wasn’t sure if I should have come in. My temperature had come down a bit to 38.2oC thanks to Tylenol and Advil but my heart rate was 157. Ok, I naturally have a fast heart rate but even that was high for me. She clearly indicated that I had made the right decision to come in. No waiting room for me, I was going straight in.

I was immediately given an EKG to test my heart and then hooked up to a heart monitor, had my blood pressure and temperature measured regularly. I was given IV fluids and antibiotics as a precaution and blood was taken for tests and cultures, I peed into a cup, had a chest x-ray and a full examine. (Unfortunately, I was all too familiar with this drill because I had a serious postpartum blood infection that resulted in being stuck in the hospital for a week when I had newborn twin babies at home - but that’s another story. That was before my days of RA).

The doctor said he understood the seriousness of this because he had a friend that was on a biologic that had a near fatal infection. Great that he understood. Near fatal? Did I need to hear that? He was not going to let me go home until he felt confident it was safe to do so. So I spent my Good Friday, on a hospital gurney with a colourful mask on, waiting.

He asked what I wanted to do. I said I really didn’t want to stay in the hospital on a bed that was KILLING my joints but on the flip side, I didn’t want to go home and end up back at the hospital worse than I had started.

Hours and hours went by. My heart rate calmed down to a more normal rate. My temperature came back down to normal (thanks to fever reducer meds). My blood work looked fine. My x-ray appeared clear. The ER doc called the internal medicine doc on call and he said it was likely a virus. I hate when they say ‘it’s just a virus’. Viruses can be scary, and are often hard to treat. I know I used to teach university microbiology. Everything looked stable so I was to be discharged but to return if my fever went up again or if anything new arose.

I think I got home around 11pm. Curled up into my own bed and went to sleep. I was exhausted. Around 3am I woke up to those same chills. I checked my temperature and it was still fine. I went back to sleep. Around 5am I woke up and was SO nauseous. I took my temperature it was 39oC! I woke up my hubby, and he said we are going back to the ER! Thank goodness, my folks were there or else we would have had to drag the kids to the hospital too. I puked the whole way to the hospital (a 20 mins drive).

Although I got in to an examination room immediately, my experience this time was VERY different. New staff. The nurse took some blood. The doc came in and told me that temperature is just a number. It’s no biggie just go home and take some Tylenol or Advil. But… but… but I’m on a immunosuppressant! It’s not just a number! She made me feel like I was over reacting. But I was following everything I had in my emergency plan and the doc the previous day said to COME BACK if things got worse! With my mouth dropped to the floor, I felt I had no choice but to go home. (Of course, my hubby had stepped out at that moment and I had no one there to help defend me. Coincidence?).

So I went home. Happy Saturday. I spent all Saturday and Easter Sunday in bed popping the maximum dose of Tylenol and Advil. Checking my temperature continually and guess what? The fever was STILL THERE. After all it is JUST a number! I pretended to eat Easter Dinner. Aren’t you glad you came to visit, Mom and Dad?

Easter Monday rolled around and the Orencia helpline was now open. I could speak to my caseworker. I explained all that had happened. How the attitudes of the doctors had been vastly varied. I still had my high temperature and I was already taking the maximum Tylenol and Advil. And now I had developed a phlegmy cough. She said try calling your doctor’s office (fat chance they will be open) or go back to ER. With the doctor’s office on an extended weekend, I had no choice. Back to the hospital I go. Trip #3.

This time they made me wait in the waiting room. I went from being told we don’t like people on biologics with an infection hanging out in the waiting room, to you will sit in the waiting room until we are good and ready for you.

When I finally did get into an examination room I had more blood work done. The doctor came in and examined me. He listened to my lungs and did blood work. (Doc #2 didn’t do any of this - LAZY). He said he could hear something in my lower right lung. He sent me for a chest x-ray while he went to the lab to check the cultures from the samples collected on Friday.

Diagnosis?

Bacterial Pneumonia! X-ray confirmed it. A Rx for antibiotics was in order and if my temperature wasn’t gone by Wednesday I was to return.

You can’t have FAKE Pneumonia! I TOLD YOU SOMETHING WAS WRONG!

Unfortunately, I’m allergic to the antibiotics that are easy on your GI tract, so for the next 10 days I would be enduring stomach upset, nausea and the worst taste EVER in my mouth. Despite the fact that I had no appetite, my fever was gone by Tuesday.

I was on the road to recovery.

I had my regular bimonthly checkup with the rheumy that Friday (great timing, eh?). So I had copies of all my charts from the ER ordeal.

I asked her opinion. This is what I did. But what SHOULD I have done? She said I was absolutely correct to demand they figure it out. You do not mess around with an immunosuppressed patient. She asked if I stressed that I was on a biologic. And I assured her I did, OVER AND OVER. Let’s hope it never happens again, but if it does she told me to DEMAND they call the RHEUMATOLOGIST on call. She was not pleased with the lack of action by doc #2. It is NOT just a number.

So after I finished my 10 days of the worst (but greatest) antibiotic ever, I had to wait out a couple more weeks before I could start injecting again. And can ONLY do so if I have NO signs of infection.

I’m clear to start this week again.

So I had to adjust my Emergency Preparedness Plan. Don’t mess around. Never ignore a fever. Remind the doctors that you are on a biologic and are immunosuppressed. Get the opinion of a rheumatologist. Don’t mess around, if you think you have an infection and it’s not getting better SEEK MEDICAL ATTENTION even if the doctors just think you are “just overreacting”. It’s your life, not theirs.

New Poem / New Thought

2014-05-15T16:15:00.003-04:00

To hold you over until I finish my next blog post.

Dear my fellow readers

2014-05-09T19:09:00.001-04:00

I'm still here. I have just been in hiding for the last few weeks. Stupid pneumonia.

I will be back next week with a brand new blog post all about my experience with my first infection while on a biologic.

See you next week! It's my grand reopening of my blog!

Stay Positive!

2014-04-11T13:09:00.002-04:00

Good Morning Sunshine

2014-04-09T19:50:00.002-04:00

I can honestly say I have never been a morning person. Although I do see the appeal of getting up to hear the birds, smell the fresh morning air, seeing the odd sunrise, and just enjoying the calm before the hustle and bustle of the day kicks in. I, however, have always preferred to enjoy these moments from the comfort of my own bed.

Perhaps, if I liked coffee, a morning cup-a-Joe would perk me up enough to make me love morning. Probably not. Ironically, my hubby bought me a PJ set that says “Little Miss Sunshine” as I clearly am not in the morning. In fact, speak to me at your own risk.

But now (post RA), how do I feel about morning?

A typical morning goes something like this…

I wake early, from what is usually a restless sleep (I used to be such a good sleeper). Somehow, that once comfortable position now gives me great pain or I have bent a joint into an unnatural position and this has awoken me. Despite many attempts I cannot go back to sleep. What is the alternative? Get up? I ponder this simple, yet complicated idea for a while. This is when I remind myself that after I sit up (which is an exercise in itself) I will need to take that first step out of bed, and it is going to hurt. Somehow, I find the strength and willpower to place my feet on the ground, and by a miracle, I assume the standing position. I appear as an old lady hutched over and uneasy on my feet, while I grab the nearby dresser to steady my first movements. I prepare to shuffle my way out of the bedroom. Thank goodness for my super puffy slippers that give my bones in my feet some cushion and allow me to slide my feet across the floor giving my knees the option of not engaging for a little while longer. I will continue to shuffle my feet along the floor to the bathroom, I am thankful we have wood floors because I'm sure if we had carpet I might shock myself each morning with all the static electricity I would create. I arrive at the bathroom, exhausted. I take a look at myself in the mirror, wondering how I will get through yet another day, ironically I am already to go back to bed. I take a deep breath and the day begins. It will be several hours until I can start to give the appearance of moving 'normal' even if it still hurts. Morning stiffness is just part of my daily routine.

I have never been a morning person. But RA doesn't allow me those extra hours to sleep in anymore. RA makes me get up much earlier than my fatigued body would like. RA makes mornings difficult and I must fight to start each and every day. Because life does go on. And RA although you keep trying to keep me down, I will continue to rise, albeit slowly, each and every morning, despite all the stiff, sore, and swollen joints. I am not a morning person but I don't want YOU, RA, to take away my sunrises, fresh morning air and birds. There is a world out there to discover and I don't remember you, RA, being invited.

Good morning world!

RA doesn’t affect my life?

2014-04-02T19:31:00.000-04:00

Are you serious? Are you kidding? It affects every part of my life and the lives of those around me.

Just like in a movie, let’s rewind a bit. To see where this all started that lead to this blog post.

I’m very lucky to have a FANTASTIC rheumy, she listens and appears generally concerned for my well-being. I’m pretty sure she knows who I am when she walks into the examination room. She runs her clinics in a teaching hospital so you get a range of medical trainees, med students, residents of all types, including rhemys-in-training. I’m all too familiar with the drill of an appointment in a teaching hospital after being pregnant with identical twins (all the newbies wanted to learn from me). The nurse comes in and preps you for your appointment, and then the medical trainee comes in. They do a thorough exam, asking many questions, poking and prodding. I just humour them with this practice appointment, after all they have to learn somehow, right? One thing about having an appointment with a specialist in an environment like this is that the appointments are long, never rushed, always lots of time to discuss things and make the right decision for you. I’m lucky that way.

At my most recent appointment I had a resident, not sure if her aspirations were to become a rheumatologist, I never asked. She did the usual exam, as if she had memorized the checklist she was given beforehand. (I have learned that sometimes they properly read your file before coming in, and other times not so much. Like the time I had resident at my prenatal appointment tell me the heartbeat sounded good, and I replied how about the other one? He had missed the twin part in the file).

She made notes and checked all my troublesome joints, asked for my questions and concerns. All very routine. We even discussed how my most recent course of drug treatment is not working. And then out of the blue she says “So RA doesn’t affect your life”. This was not a question but in fact a statement! I was shocked and speechless, my husband and I stared at each other completely in awe of what had just happened.

It doesn’t affect my life? It affects every part of my life and more! It is the reason I can’t get down on the floor to play with my kids, it’s the reason I struggle climbing stairs, the reason I hurt every day after doing basic life chores, the reason I can no longer do research, it’s the reason my husband has to pull double duty for all the things I can no longer do. It is the reason for so many things in my LIFE! I certainly hope that this was a rookie mistake. Didn't your mother ever teach you to say what you think in your head NOT OUTLOUD? WOW!

I regret not staying anything direct to her. But to be frank I was so much in shock that the words just weren’t there. Having a chronic illness is hard enough without a medical professional making you feel lazy and like a hypochondriac.
The resident left to discuss her findings with the attending (my doctor/rheumy). And eventually they both returned to my examination room. And in my opinion, this is when my real appointment starts anyway. At least my rheumy knows, yes it does affect my life, after all, if RA didn’t affect my life, I wouldn’t have so many appointments and take so many drugs just to try and get a bit of my life back.

It really does stress the importance of having a knowledgeable doctor that also has a good bedside manner. I am so thankful that my actual rheumy has those and many other good qualities. She is fantastic.

Where are you hiding Spring?

2014-03-29T11:04:00.004-04:00

This has been a L-O-N-G, hard winter. Frigid temperatures, record snowfalls, ice storms, it has been never ending. I have had enough! Although, Spring officially started about a week ago (according to the calendar) it appears to be missing. I'm thinking of placing a missing season report with the authorities.

I have to wonder if Mother Nature is going through peri-menopause and we are just witnessing her crazy mood swings. Mother Nature – get a grip! Or I wonder if our extended winter is in response to the popularity of Frozen, “the cold doesn’t bother me anyway”.

Why do I care so much that Spring is late? I'm Canadian and we are supposed to pride ourselves on our weather extremes. I care because this is the first winter where my RA has made things tough.

Why would winter make my RA worse, in particular, why am I so tired? Here are my thoughts. There must be a plausible explanation.

Winter means cold. When it’s cold outside, you dress differently. Say goodbye to tank tops, shorts and flip-flops, say hello to winter coats, snow pants, hats, mitts, scarves, extra sweaters, extra socks etc. All this extra stuff means my already tired, sore joints need to do extra work to lug around all those extra pounds.

Winter boots - argh! They are bulky, heavy and offer no support. Oh and the winter socks, bleach! Sometimes my feet get so hot, they swell. Not an ideal situation. Basically, my feet hurt all winter. Each year I tell myself I should get new boots, but then procrastination kicks in.

Snow and ice bring extra work. You have to shovel it, scrape it, salt it. Just melt, already! Besides moving it from point A to point B, the sheer act of walking through or on it can be exhausting. By far my least favourite winter precipitation is ice. Ice brings a completely new level of... well... fear. I’m so scared of falling. Falling and not being able to get up by myself or worse falling and hurting myself.

Did I mention that winter is cold? I’m sure my body is using up extra energy just to maintain my body temperature. And the act of shivering to keep warm makes me so tense. This is in addition to the tension I already experience trying to prevent a potential slip. I have to keep reminding myself to relax. All this tension is giving me a headache!

I miss the sunshine. I'm sure the lack of vitamin D, a generous donation from the sun, makes me more tired, sucking away my motivation I might have had. During the warmer months, I am always outside, albeit sitting, but at least outside. There is a lot to be said about being out in the fresh air.

I know that being physically active can make you feel better. Now I'm not talking about an intense workout, just simple things like going for a nice (short) walk. I haven't been able to do this since the Fall. Our road is just too icy, cars have enough trouble going up and down it, forget little ole me going for a jaunt. And walking through the snow is just plain difficult.

Everything takes longer in the winter. Getting anywhere takes forever, you have to get bundled up, warm up the car, clear the snow/ice off the car, shovel the driveway/walkways etc. Extra time spent doing these things means I have less energy left to do other things. The fun things!

I miss my fresh veggies and fruit. It is true you can get them at the grocery store but they are imported, tasteless and far from fresh always going rotten so fast. We have eaten lots of frozen this winter. Yuck! We were spoiled this past growing season when we received a box of fresh, locally produced organic veggies. Getting a box each week forced us to eat healthy and I'm sure it helped me feel better.

I think everyone who experiences true winter gets a little bit of cabin fever at some point. Being stuck inside can play havoc on your mind and mood.

So perhaps it isn’t winter, per se, that makes my RA worse, but it is my response and behaviours to it that do. Anyhow, let’s hope that Spring really is around the corner or else I’m heading to Florida!

Does the winter affect your chronic illness?

This Little Spoonie went to Market

2014-03-25T18:19:00.000-04:00

Be a Superhero - 10 Steps

2014-03-24T15:55:00.000-04:00

Anyone with a chronic illness knows that to appear normal requires great strength and bravery. Be a Superhero!

I am just me most of the time. I don't pretend to be someone I am not, I don't pretend to be able to do things I can’t, I ask for help when I need help, I don't pretend to feel okay when I don't.

But when I go out into the 'real' world...

BAM!

I become a Superhero. No one would ever guess my true identity. I am now a brave, fearless Superhero ready for anything. I appear normal. After all, I don't look sick, right?

To be a Superhero takes lots of skill and planning. To reveal my secret identify (aka RA) would have dire consequences. So many questions (and judgments) would come forth, and to honest, I just don't have the energy to deal with them, nor should I waste any energy on them. And once in a while, it is kinda nice to play dress-up and pretend to blend in just like everyone else.

So here are my…

10 Steps to be a Superhero

1. Rest. If you know you have a planned outing or event, make sure you are well rested. Do not over exert yourself in the days (or hours) leading up to the event. Napping prior to getting ready is advisable.

2. Get ready. Make sure you have chosen your outfit wisely. It must be comfortable and hassle-free. Will you be able to remove any outerwear independently? Most importantly, pick appropriate footwear. Will you be standing for extended periods of time? Will you be able to sit and rest your legs/feet? Will you be required to remove your footwear? Can you easily remove your footwear without assistance? Should you bring indoor shoes (slippers) to help cushion your feet (especially if you will be walking/standing on hard surfaces)?

3. Survey your environment upon arrival. First, you must observe your surroundings with intricate detail. Do not overlook anything. Locate all areas to avoid or develop a strategy to navigate through or in these danger areas. Are there places to sit? Your legs or feet may need a rest. If you choose to sit, will you be able to get in and out of this furniture without assistance? Will you be required to use any stairs? Do the stairs have a handrail to assist you? Before using any stairs, check for alternates, they may not be obvious. Check for any wheelchair/disability signs before attempting any staircases, these signs may be clues to elevators, escalators or even ramps. Would someone notice if you needed to use the elevator to go up or down just one level? Where is the bathroom located? Is it easily located or does it require a long walk or stairs to access?

4. Medication. Develop a medication plan. Will you be required to take any medication while at the event? Could you do so discretely? Could you take your medication prior to or after the event?

5. Stay hydrated. Drink lots of non-alcoholic fluids. Dehydration can aggravate inflammation and pain. If drinking water is not accessible, please request it.

6. Avoid triggers. Do you have any known foods that could trigger a flare? If these triggers have a quick onset, it is best to avoid them. If you choose to consume a known trigger, you are accepting any consequences that could affect this and events in the near future.

7. Moderation. This is key, especially for a long event. Be sure to exert your energy at a constant (moderate) rate throughout the event. Or alternate your energy exerting activities with bouts of rest (but do not rest too long as joint stiffness may result). Listen to your joints and your body.

8. Enjoy yourself. This is one of the most important steps, if you want to be a successful Superhero. Enjoy your time. Good company and conversations always keep the secret identity in check. A happy time outweighs a little pain, always. Have a good time! And don't forget to smile!

9. Exit plan. Should the fatigue or pain prove too much? Do you have a polite strategy to vacate the premises without drawing attention to yourself or your secret identity? Does anyone that accompanied you to the event know of a possible exit plan? Debrief then prior to arrival at the event. Did you drive yourself there? Be sure to allow extra time and energy to allow you to safely drive yourself home. If you are unsure if you will be able to drive yourself, be sure to have an alternate method of transportation available.

10. Rest again. Upon your arrival home, it is best to take off the Superhero disguise. You have earned some rest and relaxation. Life as a superhero is sometimes tough.

Remember, anyone with a chronic illness knows that to appear normal requires great strength and bravery. Be a Superhero!

Ode to RA

2014-03-20T14:16:00.000-04:00

Today is not only the first day of Spring but also International Day of Happiness (so says Social Media). In honour of these, I just don’t feel like being serious. In fact, I just want to be silly.

I hope it makes you smile (aka don’t take it too seriously, please).

Rheumatoid Arthritis Sucks

R is for rheumatologist, a doctor for my joints
H is for hurt, please don’t touch those points
E is for elbow, that refuses to bend
U is for under the covers, my bed is my friend
M is for Methotrexate, the drug we must take
A is active, when all my joints ache
T is for tired, I just need a nap
O is Orencia®, so I don’t feel like crap
I is for inflamed, so swollen and red
D is for DMARD, those drugs I so dread
A is for appointment, a visit to my rheumy
R is for repeat prescription, this is getting gloomy
T is for temperature, oh no! I’ve got an infection
H is for Humira®, a type of biologic injection
R is for remission, when this all goes away
I is for injection, it’s biologic day!
T is tests, take my blood and monitor my disease
I is for immune system, stop attacking me please
S is for synovium, inflamed and giving me grief
S is for steroid, prednisone or cortisone for that instant relief
U is for understanding for when I feel pain
C is for C-reactive protein, a blood test from the vein
K is for killer headache, the meds make me pay
S is for support, to help us through each day!

Have a great day everyone!