Tuesday, May 31, 2016

Live Your Life Outside Your Blog: Guest Post on Cateepoo Blog

My friend Cathy issued a challenge for May's Arthritis Awareness Month in the US: live your life outside your blog. She tasked some people she knew, including me, to describe how we share our RA outside our blogs, without it taking over our lives. My guest post appears on The Life and Adventures of Cateepoo today:

Photo by David Govoni

"There are some distinct benefits to your juvenile arthritis causing you to use a power wheelchair since your teens. For one, no one doubts that I have a chronic illness.

The first symptoms of juvenile idiopathic arthritis (or, as it was known in the old days, juvenile rheumatoid arthritis) arrived when I was four years old. It took another five years to get a diagnosis. 
Initially, the JIA settled in only in two joints, but when puberty hit, so did the disease. And hard. Fast-forward through a bad systemic flare that almost killed me, fused hips, two years spent lying in a hospital bed waiting for hip replacements, and finally getting those hip replacements at sixteen. They enabled me to sit up and use a power wheelchair and I went home to live a pretty normal life. This involved going to school, moving to Canada (I am originally from Denmark), a couple of university degrees, some work, love, loss, friends, and fun. In other words: life.

But it is a life lived from a wheelchair with very visible signs of RA on my body and it has some interesting challenges. There are the looks and questions from the people I meet, and then there are accessibility issues."

Friday, May 20, 2016

Thursday, May 19, 2016

Celebrating Life by Doing the Walk to Fight Arthritis

 The 2015 Your Life with RA team

Someone told me that this year, I had the best reason not to do the Walk to Fight Arthritis, what with still recovering from the crazy health situation. To me, that means there are so many more reasons to do it.

I’m alive.

Having built up enough strength and stamina to do a 5K before I got sick had, according to my doctors, a lot to do with why I survived and am bouncing back pretty fast.

I’m bouncing back pretty fast. A month ago, I barely had enough energy to sit in my wheelchair for two hours. This week, I went back to work.

We’ve done the Walk for two years. That means it’s tradition!

Earlier this year, I worked with The Arthritis Society on enhancing accessibility for The Walk to Fight Arthritis. I want to see our work implemented.

With the exception of some numbness in my hands, I got through a traumatic health experience with very little impact in terms of my rheumatoid arthritis. That has a lot to do with taking Biologics. These drugs have made such a huge difference in the lives of so many with inflammatory arthritis. They don’t work for everyone, so raising money for research is very important.

This year is very personal for me. It is about celebrating the fact that I’m still here. I’m grateful that several of my friends are joining me on the Your Life with RA team again this year. We are a bit late out of the gate and that’s reflected in a more modest fundraising goal. As always, the hope is that we will blow right past that and this is where you come in.

I’d be tremendously grateful if you would consider donating either to me personally or to the Your Life with RA team. Any amount is welcome, no matter how small. Of course, if you want to donate pots of money, we’d be more than willing to accept that, too!

Two caveats about the Walk: Because I’m still recovering from the ICU experience, I’m leaving it until the day to decide whether I’m doing the 1K of the 5K. Also, if it rains I’ll postpone walking and do it in my neighbourhood on a dry day. I’m committed to this cause, but not so committed that I’m willing to risk getting sick again.

Tuesday, May 17, 2016

Numb Hands and Dragon Scales: Coping with a Traumatic Health Experience

It is still with me. The ICU experience, the hospital stay, the surreal fact that I was so very sick, that I came so close to death. It colours part of every day and I suspect it will continue to do so for some time to come. Trauma sticks around. 

At first, I thought I was fine, even Fine. But after a lot of conversations with my family and with others who have been there, and quite a lot of this presence of memories, I have come to realize that it was a trauma. You might think this is obvious, what with waking up with a crapload of equipment in my throat doing my breathing for me, not being able to speak, and having multiple tubes hooked up to my body, but it took a while for me to recognize this. Because I’m not always totally smart about my emotional reaction to things.

My rheumatologist told me of another patient of hers who after a lengthy ICU stay made a career out of writing and speaking about ICU PTSD. Which turns out to be fairly common. Having hallucinations while sedated is apparently also a thing – this article reminded me of my own very realistic dreams of being held hostage in the hospital. Although I don’t believe my own reaction is all the way to PTSD — I think the notes that were kept by The Boy and the conversations I’ve had with family and friends that are filling out the blank spaces are helping me process what happened in a healthy way. Nevertheless, it is haunting me more than a little. 

I also have a few reminders that make it hard to move on. One is the bandage on my throat protecting the trach stoma (hole) that still hasn’t seen fit to closing. Thankfully my airway has healed, which means I have my voice back and that helps with feeling closer to normal. Despite my late afternoon nap, I still have to lie down for an hour in the evening. If I don’t, the pain goes a little wiggy. I run out of breath a little sooner than I used to and hit the wall pretty quickly when asked to focus, but those are getting better.

And then there are my hands. When I woke up, they were swollen to the point of looking like air-filled balloons made out of surgical gloves. 

All of me was swollen, my rheumatologist mentioned something about the lack of protein, but I don’t really know why. Well, I know why my stomach looked like I was pregnant — one of the nurses said they had pumped me full of air when trying to bring me back from the crash. This didn’t explain my hands and feet, though.

At first, I could barely lift my hands and it took weeks until I could reach my face. As I started using my hands, trying to write to communicate, moving and exercising, the swelling began to subside. And that’s when I realized that parts of my hands, as well as part of one of my legs and the top of one foot, were numb. The rheumatologist intern tested whether I could feel vibration and I could, at least where she held the vibrating device. The day after, I realized that I had an ulnar nerve entrapment in both elbows, and the equivalent by my knee. I’ve had it once before, the memory of that numbness along the edge of my hand and in my ring and little fingers coming back.

It wasn’t until over a week after I came home that I realized I had something else, as well. That the little finger on my left hand was partially paralyzed. The injury is worse on the left arm than the right and I remember a very realistic dream — hallucination? — of someone holding my arm up and stretched, creating agonizing pain in my elbow. I think it was probably when they inserted a PIC line on the inside of my upper left arm. Clearly, it damaged something.

The numbness used to be up both arms, as well, but that has gone away, the numb areas shrinking gradually. The areas still affected also buzz now, sometimes painfully so when touched. My doctor says it is a good sign, that it means there is life in the nerve. She also says that it can take up to three months to heal.

My left little finger didn’t buzz, though. It has been completely numb, without sensation. It has gone so deep within that I can’t feel it at all, would be surprised when my right hand touched something and I’d look down to see my left little finger there. There was little motor control, as well, which I only realized when trying to do Alt+Ctrl+Del on my keyboard and nothing happened.

I worry that I have lost that finger. My other little finger is still functional, despite the numbness and the buzzing. Something more is wrong on the left-hand side. I have tried to wrap my head around potentially having lost that finger. I tell myself that it is a small price to pay for surviving this critical illness. And then I tell myself that it has only been six weeks since I woke up, so perhaps I shouldn’t leap to conclusions. The continued swelling along the outside of my hands and in the fingers affected doesn’t help. I can’t wear my ring because of the swelling in my left ring finger and much of my frustration focus on that. Because that’s easier than thinking about the finger next to that.

On a shelf in my living room sits a tiny stuffed dragon, green with purple wings. It was a gift from my sister Janne the second-last Saturday I was in the hospital. She came into my room on the regular ward, the dragon poking its head out of her purse. She handed it to me with a smile and said “this is for you. Because you are fierce as a dragon.” And when things are hard, I look at the dragon and remember my sister’s faith in me and my ability to bounce back.

Last week, I decided to do something to celebrate being back and to make it about my hands, creating a positive when I looked at them, rather than the constant worry in the back of my mind. So I took the green nail polish with a shimmer of gold that my sister also brought me, and went to see Catherine at Poa Studio and she made my nails look beautiful.

Janne says they look like dragon scales. And now I have a reminder that I can do this right on my fingertips.

Is it a coincidence that just this Sunday, my left little finger started buzzing?

Tuesday, May 10, 2016

10 Things about What It Is Like To Be On a Ventilator

This post is a look at the experience of being on a ventilator from the point of view of the person on the receiving end of the tube. I was initially ventilated with a tube going into my airway through my mouth, but don’t remember what that was like. When an attempt was made to extubate me, it didn’t work. I found out later that up to 40% of people who are extubated will need to be re-intubated. When they attempted to do that, my vocal cords were so swollen — common after being intubated — that they had to do a tracheostomy. My memories of being on a ventilator start then.

It was an extremely educational experience. Which makes it sound as if it was no big deal and that’s not the case at all. I was remarkably calm about it at the time, but that likely had something to do with the happy pills they feed you in the ICU. It’s a stressful situation to be in and I guess they learned that the patients do better if heavily medicated.

Rhythm. I don’t actually remember much about the way the ventilator breathed for me, except the rhythm. The little jerk of the oxygen hose attached to the equipment in my throat as the ventilator shifted from breathing in and out quickly became just part of how things were. Not having breath above the tracheostomy was a bit weird, though, but mostly in retrospect (see above re: happy pills).

Noise. Being on a ventilator is noisy. The hiss of the oxygen is, granted, white noise, but it is remarkably loud. It makes you realize how quiet your normal life can be.

Being silenced. Not having any breath go past your vocal cords means you can’t talk. Communicating can be very difficult as a remarkable number of people (including staff in the ICU) really suck at reading lips. It can take 15 minutes to communicate something very simple, longer if you’re trying to crack a joke. Pen and paper can be very useful. Initially, I could barely lift my arms and my writing was illegible. Not being able to talk was the most frustrating part of it all. It added an element of not quite being part of the conversation and made it very difficult to advocate for myself.

Tubes, tubes, tubes. I remember being very conscious of the hose that connected me to the ventilator and the oxygen. Any time you move, it moves with you and it is very flexible. Still, I was hyperaware of where it was, afraid of it being disconnected. And then there is the catheter, the NG tube (see below) the PIC line, and the arterial line. It’s a lot of tubes. 

Pop-offs. Occasionally the hose from the ventilator pops off. At first, this was really scary, but I eventually discovered that I could make do on room air until someone came to reattach the tube. In the ICU, that happens quickly. Staff are used to the pop-off and someone will come running when it happens.

Equipment. Initially, a cuffed tube is inserted into the tracheostomy. The cuff is a small balloon that can be inflated or deflated, depending on what stage in the weaning process you are (more on that in the next post). When you are on the ventilator, the cuff is inflated to block any other sources of air. There’s another separate tube within that is called the inner cannula. This can be changed when needed. Despite all this equipment in your throat, it is remarkably stealth in terms of how it feels. Occasionally, I’d have a bit of a sore throat, which I assume was based on the position of the inner cannula.

Secretions. That’s a medical term. I call it lung gunk. We all have stuff in our lungs that we cough up during the day without noticing. When you’re on a ventilator you need to pay a lot more attention to this. It’s important to develop a good cough because that will help you get off the ventilator more quickly. Until you do, the gunk will often gather in the inner cannula, meaning you will need to be suctioned and sometimes it will need to be replaced. It’s amazing how quickly you get used to someone popping this thing in and out of your throat.

I’m not sure how suctioning is done when the ventilator is inserted through your mouth, as I have few memories from that time. When it’s through a trach, a thin tube is inserted into the inner cannula. I very quickly learned to develop my cough so I could get what was called a “tip section” in which the tube is inserted only an inch or so. Much deeper and it tickled my gag reflex and made me feel like I couldn’t breathe. It was worth it, though — being suctioned makes you feel much better and help you breathe more easily.

Feeding tube. Because your airway is occupied by equipment, you can’t protect it as well as you normally do. That means you get absolutely nothing by mouth. No food, no drink, and when you brush your teeth, the nurse will suction out whatever water might be in your mouth. Enter the NG (nasogastric) feeding tube, which is inserted through your nose and goes into your stomach (you don't really feel it). You are hooked up to more or less a constant flow of liquid feed and your medications are crushed and injected into this tube. From the minute I woke up, I was fantasizing about drinking cold water — didn’t think much about food, but was desperate for water. When I arrived on the regular ward, the dietitian added a flush of the equivalent of a small cup of water every four hours. Feeling it come into my stomach was delightful.

Swallowing can be tricky. Not having eaten anything for a month weakens the muscles you use for swallowing. In order to be cleared for eating regular food you need a swallow test. They position you in front of an x-ray machine and record video of you swallowing a variety of foods on different points between liquid and solid. All of these foods are mixed with barium. Tasty. Over the next few weeks, I eased into eating, starting with soft foods, gradually adding more complicated items, such as crunchy things, food consisting of small bits (e.g., cereal), certain fruits, like oranges and apples, etc. Although my swallowing seems to be back to normal, I still haven’t tackled popcorn or trail mix.

Dependency. One of the most profound feelings of being on a ventilator is the awareness that you are dependent on something else for your breath, the stuff that makes you live. Being in the ICU feels very safe — there is always someone around, nursing care is done one-on-one, or at most two patients to one nurse. You’re hooked up to a monitor that beeps an alarm if something is even slightly wrong. Once you move to a regular ward, this is not the case. Then you’re stuck in a room and need to press the call button to summon a nurse. It can take a while for it to be answered and for someone to come. Being on a ventilator on a regular ward is scary.

The good news about being on a regular ward is that it means you will continue the weaning process you started in the ICU and move towards decannulation (the equipment being taken out of your throat(. More on that in the next post.

Have you ever been on a ventilator or known someone who was? What was that experience like for you?

Edit: my memories are still a bit fuzzy and it turns out I was wrong about one aspect of this. The Boy has informed me that I was weaned off the ventilator by the time I was transferred to the regular ward. I remember that the hose attached to the wall was still attached to my trach, and that is true. However, by the time I went to the regular ward, it was not actively breathing for me, but merely a source of oxygen.