This past year has been a year of change for me. 3 new nieces, 1 new teflon/plastic shoulder, 1 new designer drug (my nickname for Enbrel), 6 mg less per day of prednisone, 2-3 flares and 1 realization - in the face of flares, surgery and other health issues - that my family is really more important than anything else in the world.
In reflecting on my year, I feel grateful for the people in my life and for the events that have happened. I believe you learn from your experiences, and this year was a world of discovery.
I learned through my shoulder replacement that I am pretty tough. That you need to be your own health care advocate. That a nerve block for a Total Shoulder Replacement is a very good idea.
I learned that if you ask for help, you will usually receive it. Friends are willing to take you grocery shopping when you can't drive - and they will even carry your groceries into your house. They will also drive you and your son to his appointments. Wait. And then drive you home. All you have to do is ask.
I learned that a parents love never lessens. Even when you are their 34 year old "baby." This year has presented a few more downs than ups, but the support from my parents never wavers. They are a 4 hour car ride away, or a 10 digit phone call. Either way, I always feel their physical and emotional support .
I learned it was time to move on from my job. That family is more important than work. In 2010 I am working towards transitioning out of my company and am excited to stay home with the kids.
I learned that I need to take better care of myself. To re-visit treatments that gave me some support and relief. Massage. Acupuncture. Eating better. Small amounts of exercise. Naps. Doing less in a day and feeling good about it.
I learned to find joy in the day to day. In simple things. Going to Starbucks with friends for a chat after the kids have gone to bed. Playdates. An "I lub you, mommy".
I learned there is a wonderful community of RA bloggers, offering support, friendship and the bond of similar experiences. It's nice to feel like a part of a community of people who understand.
I learned - for the 12th year in a row - that my hubby rocks. Literally. He is my rock who makes me laugh, does my hair in a ponytail when I can't reach due to my RA, shares all our parenting ups and downs and just loves me.
From my warm, fuzzy place of gratitude, I hope everyone has a Merry Christmas!
Wednesday, December 23, 2009
Sunday, December 20, 2009
Energy - A hot commodity for people with RA
It comes, and it goes, but it's always on my mind - exactly how much energy do I have today? I think most people in my life would agree - I'm a bit of a doer. I love checking things off my list and getting through lots of errands, cooking and house-stuff. But each activity takes energy, so I have to budget the estimated amount of energy I have vs. how much energy I think I have. Sometimes it works out, and I have some energy leftover at the end of the day, and other times - not so much. I am tired and exhausted long before bedtime, so I push through the remainder of the day silently cursing myself.
I know I need to slow down. I forget that the measure of "how was your day" is not "what/how much did you do today". I could have a super day and do absolutely nothing on my to-do list. I could just play with the kids and it could be the best day ever.
Given my current flare, I am taking a harder look at what I have to do today versus what I would like to get done. I simply don't have the energy that I used to (and would like to have), but I'm not one to sit around and turn off my inner monologue of everything that still needs to be done. I'm slowly realizing that there is nothing wrong with life in the slow(er) lane. But it's a work in progress for me - and I find myself (especially around the holiday season) reverting back to my roots. I need to add a permanent item to my "To-do" list to take a break and slow down. Perhaps then I'll do it.
I know I need to slow down. I forget that the measure of "how was your day" is not "what/how much did you do today". I could have a super day and do absolutely nothing on my to-do list. I could just play with the kids and it could be the best day ever.
Given my current flare, I am taking a harder look at what I have to do today versus what I would like to get done. I simply don't have the energy that I used to (and would like to have), but I'm not one to sit around and turn off my inner monologue of everything that still needs to be done. I'm slowly realizing that there is nothing wrong with life in the slow(er) lane. But it's a work in progress for me - and I find myself (especially around the holiday season) reverting back to my roots. I need to add a permanent item to my "To-do" list to take a break and slow down. Perhaps then I'll do it.
Sunday, December 13, 2009
Was it a bus or a train that just ran me over?
I've found my pity place and I'm throwing a huge party - feel free to join in. I'm tired. I'm sad. I'm mad. If I were my 2 year old I would be on my tummy right now kicking and screaming in a full blown tantrum- assuming I had the energy, of course. Instead of throwing a tantrum on the floor, I'll just write about it.
I am 97.6% sure that I am having a flare, however it feels like a muted version, as my sugar-daddy anti-RA drug (Enbrel) seems to be working for me and I am not feeling the full force of the flare. I am trying - 1 mg less per day each month - to get off my Prednisone. I have posted before about my love/hate relationship with Prednisone - but I feel it is time to part ways, but what is the cost? I have been reducing my Prednisone from 10 mg per day down to 4 mg per day now - which I am excited about. However I have noticed that I have had a few mini-flares recently, so I am now paying the price of less prednisone. RA Guy has blogged about Diclofenac injections, and I have made a note to ask my rheumatologist about this on my next visit.
I am also paying the price of a way-too-big-day at work this past week. Our company hosted a drop-in party for 100 contractors and I (as usual) helped out with food prep all day - leaving me on my feet using my hands. My right thumb said a big "screw you" by not functioning properly for the following 2 days and the rest of me woke up feeling like a bus/excavator/street paver/steamroller/passenger train ran over me (can you tell I have a 4 year old boy?). In sum, I feel like crap.
I'm mad at myself for not speaking up. You'd think that after 18 years of living with RA, I would know my limits and be able to speak up. Somehow I prioritized work over my health and wound up on the couch, tired and in pain. Usually I'm a pretty smart cookie. Usually.
I am 97.6% sure that I am having a flare, however it feels like a muted version, as my sugar-daddy anti-RA drug (Enbrel) seems to be working for me and I am not feeling the full force of the flare. I am trying - 1 mg less per day each month - to get off my Prednisone. I have posted before about my love/hate relationship with Prednisone - but I feel it is time to part ways, but what is the cost? I have been reducing my Prednisone from 10 mg per day down to 4 mg per day now - which I am excited about. However I have noticed that I have had a few mini-flares recently, so I am now paying the price of less prednisone. RA Guy has blogged about Diclofenac injections, and I have made a note to ask my rheumatologist about this on my next visit.
I am also paying the price of a way-too-big-day at work this past week. Our company hosted a drop-in party for 100 contractors and I (as usual) helped out with food prep all day - leaving me on my feet using my hands. My right thumb said a big "screw you" by not functioning properly for the following 2 days and the rest of me woke up feeling like a bus/excavator/street paver/steamroller/passenger train ran over me (can you tell I have a 4 year old boy?). In sum, I feel like crap.
I'm mad at myself for not speaking up. You'd think that after 18 years of living with RA, I would know my limits and be able to speak up. Somehow I prioritized work over my health and wound up on the couch, tired and in pain. Usually I'm a pretty smart cookie. Usually.
Sunday, December 6, 2009
Some Hardware - Part 3
I made preparations for my 2 little ones to leave town for a week of fun at the grandparents. Both sets were wonderfully supportive to take the kids for 4 days each so my first few days recovering at home I could focus on myself. I thought that would be best for me and for them. I want to limit what they see of my arthritis for now, and me with tubes sticking out everywhere might just be too much for them - they don't need to see their mom like that. I made arrangements at work, I attended my pre-op appointments. I did not get a pedicure (thought I desperately wanted one) - apparently they check your toes for your circulation and nail polish gets in the way. Boo.
To deal with my stress, I went for a 2 - 5k walks the day before. I strapped on my ipod and pretended I was someone else for a little while. I swung my arms and tried not think about anything really, especially the life-altering/life-improving? surgery the next day.
I showered with anti-bacterial soap and put on clean clothes. I arrived on time, hungry and scared. They offered me a mild sedative, I took it gladly. They took my blood pressure, which was through the roof. The nurse asked if I had problems with my blood pressure. Seriously, is that a question? I'm about to have major surgery, and you're commenting on my high blood pressure...?
I was off to the anesthesiologist for a nerve block in my neck. Honestly, my anesthesiologist was one of the nicest doctors I have met - and that's saying quite a bit, given the number of doctors I have met over the years. The inserted a tube in my neck where they could administer medication to block the nerve (pain) signals to my brain. This is a good thing, considering the trauma my poor arm was about to endure.
My surgeon was well, himself. I asked the nurse to see him prior to the surgery and he breezed in as I was off to lala land - needless to say, there was no conversation. Oh, surgeons. I really just wanted a few reassurances that everything was going to be ok.
I awoke in recovery with my arm in a sling, a little dopey, a little thirsty and a little disoriented. The nurses were helpful and soon enough I was off to my room. There was a miscommunication, as my husband was told he would be called in the waiting room when I was being moved to my room - well that didn't happen. I was in my room, alone, scared and sobbing wondering where he was for an hour. Surgery is scary. I was scared. I didn't want to be alone. I needed John to hold my hand. I couldn't imagine going through this without the support network I have. Parents, friends and mostly my hubby.
To deal with my stress, I went for a 2 - 5k walks the day before. I strapped on my ipod and pretended I was someone else for a little while. I swung my arms and tried not think about anything really, especially the life-altering/life-improving? surgery the next day.
I showered with anti-bacterial soap and put on clean clothes. I arrived on time, hungry and scared. They offered me a mild sedative, I took it gladly. They took my blood pressure, which was through the roof. The nurse asked if I had problems with my blood pressure. Seriously, is that a question? I'm about to have major surgery, and you're commenting on my high blood pressure...?
I was off to the anesthesiologist for a nerve block in my neck. Honestly, my anesthesiologist was one of the nicest doctors I have met - and that's saying quite a bit, given the number of doctors I have met over the years. The inserted a tube in my neck where they could administer medication to block the nerve (pain) signals to my brain. This is a good thing, considering the trauma my poor arm was about to endure.
My surgeon was well, himself. I asked the nurse to see him prior to the surgery and he breezed in as I was off to lala land - needless to say, there was no conversation. Oh, surgeons. I really just wanted a few reassurances that everything was going to be ok.
I awoke in recovery with my arm in a sling, a little dopey, a little thirsty and a little disoriented. The nurses were helpful and soon enough I was off to my room. There was a miscommunication, as my husband was told he would be called in the waiting room when I was being moved to my room - well that didn't happen. I was in my room, alone, scared and sobbing wondering where he was for an hour. Surgery is scary. I was scared. I didn't want to be alone. I needed John to hold my hand. I couldn't imagine going through this without the support network I have. Parents, friends and mostly my hubby.
Tuesday, December 1, 2009
Some Hardware - Part 2
To cut, or not to cut - that is the question. To start on the bionic path or not -that was the question I was struggling to answer. I knew this path was inevitable, but I just wasn't ready for it right quite then. I thought 3,5,7,10 years would pass before I needed to go under the knife - years, not months.
I had a tough December in 2008 while I wrestled with this decision. I knew that I needed the surgery, and if I waited too long, my surgery would not be terribly successful. I talked to my husband, my parents, my rheumatologist. Actually, my rheumy took 45 minutes to meet with me about it, and saw me on short notice, as I had many serious concerns about the prospect of surgery (that's putting it fairly mildly). He look at my radiology reports from the hospital and confirmed that my shoulders were in a bad way and that surgery was the best recommendation for me.
I cried, I raged, I pulled out all the stops in my pity train. Life wasn't fair. Why me? Woe is me. And then, acceptance, empowerment and a decision.
I booked my surgery for May 19th, 2009 and the countdown began. I second guessed my decision several times, but in my heart of hearts, I knew that this was the right decision at the right time and to delay was merely delaying the inevitable.
I had a tough December in 2008 while I wrestled with this decision. I knew that I needed the surgery, and if I waited too long, my surgery would not be terribly successful. I talked to my husband, my parents, my rheumatologist. Actually, my rheumy took 45 minutes to meet with me about it, and saw me on short notice, as I had many serious concerns about the prospect of surgery (that's putting it fairly mildly). He look at my radiology reports from the hospital and confirmed that my shoulders were in a bad way and that surgery was the best recommendation for me.
I cried, I raged, I pulled out all the stops in my pity train. Life wasn't fair. Why me? Woe is me. And then, acceptance, empowerment and a decision.
I booked my surgery for May 19th, 2009 and the countdown began. I second guessed my decision several times, but in my heart of hearts, I knew that this was the right decision at the right time and to delay was merely delaying the inevitable.
Tuesday, November 24, 2009
Some Hardware - Part 1
It seems that slippery slope I referred to in my last post landed me in in the Grand Canyon of joint pain, erosion and immobility.
As always, it started with a trip to my rheumatologist. Nice guy. Good care on a consistent basis. A few times when I've been flaring he's taken my call and talked about medication adjustments. I see him every 4 months, give or take.
My shoulders weren't working so well. Anything where I was reaching (doing laundry or reaching into the back of a cupboard) or lifting (mainly small children) or above my head (washing/styling my hair, overhead cupboards) wasn't all that easy for me. And this applied to both my shoulders fairly equally. At times there was shooting pain, dull pain, resting pain or little creaks, twinges and nigglies. It was getting harder to do day to day activities.
I asked my rheumatologist about my shoulders. He initially seemed hesitant about getting X-rays until I insisted a little. Always good to be a strong advocate for your own health care - you know your own body. I knew that there was damage, but I wanted to know how much. My first set of X-rays were taken in March 2008. At my next appointment the radiology report indicated almost no space left in the joint and that there was significant damage. The average non-RA person would have cartilage to create space in their joint so it moves smoothly, without pain. My RA eroded my cartilage and was started to move bone-on-bone. Yes, that is as painful as it sound.
This wasn't great news, I knew that much, but the thought of surgery never entered my mind, even when I was referred over for an orthopedic consult.
As with any specialist, ortho surgeon consult appointments are about a 9-12 month wait time here in Ottawa. So I put it to the back of my mind. Fate, it seems, interceded on my behalf as after only 2 months I had my consult appointment. It was a Friday in December of 2008. John, my husband, came with me. My surgeon, like most surgeons from what I hear, was not so great at the people skills. He did a physical exam and looked at my shoulder films. And then told me the most unexpected and devastating news - that both shoulders needed to be replaced, relatively soon.
I don't really know what I was expecting from the appointment. If I'm really honest, I thought surgery would be a few years off. My functional ability was OK and I had some pain, but I wasn't completely disabled.
The damage in both shoulders was equally bad. The surgeon explained that there comes a time where surgery is not possible as there is not enough of your own bone to work with and the repair can't be done. If I waited too long, I wouldn't be able to even have the surgery as my shoulders were deteriorating at a fairly rapid rate.
Given his people skills, it then turned into an awkward and - in retrospect - funny conversation. He asked me if I wanted to book a date for my TSR (total shoulder replacement) now, or if I wanted to think about it. I felt like I was buying a car - you know that pressure to make a decision right then and there? Strange concept to apply to your healthcare. I said I needed to think about it and would call for another appointment when I had made a decision.
And then I left the exam room with John and I started sobbing. Full-body sobs. We walked around the hospital in all the wrong directions trying to get out to our car, but not really knowing where we were going. This was the first time that I ever remember being in shock. This news wasn't mine. I was too young, I mean who has a TSR at the ripe old age of 33?
This day easily made my worst top 5 days ever.
As always, it started with a trip to my rheumatologist. Nice guy. Good care on a consistent basis. A few times when I've been flaring he's taken my call and talked about medication adjustments. I see him every 4 months, give or take.
My shoulders weren't working so well. Anything where I was reaching (doing laundry or reaching into the back of a cupboard) or lifting (mainly small children) or above my head (washing/styling my hair, overhead cupboards) wasn't all that easy for me. And this applied to both my shoulders fairly equally. At times there was shooting pain, dull pain, resting pain or little creaks, twinges and nigglies. It was getting harder to do day to day activities.
I asked my rheumatologist about my shoulders. He initially seemed hesitant about getting X-rays until I insisted a little. Always good to be a strong advocate for your own health care - you know your own body. I knew that there was damage, but I wanted to know how much. My first set of X-rays were taken in March 2008. At my next appointment the radiology report indicated almost no space left in the joint and that there was significant damage. The average non-RA person would have cartilage to create space in their joint so it moves smoothly, without pain. My RA eroded my cartilage and was started to move bone-on-bone. Yes, that is as painful as it sound.
This wasn't great news, I knew that much, but the thought of surgery never entered my mind, even when I was referred over for an orthopedic consult.
As with any specialist, ortho surgeon consult appointments are about a 9-12 month wait time here in Ottawa. So I put it to the back of my mind. Fate, it seems, interceded on my behalf as after only 2 months I had my consult appointment. It was a Friday in December of 2008. John, my husband, came with me. My surgeon, like most surgeons from what I hear, was not so great at the people skills. He did a physical exam and looked at my shoulder films. And then told me the most unexpected and devastating news - that both shoulders needed to be replaced, relatively soon.
I don't really know what I was expecting from the appointment. If I'm really honest, I thought surgery would be a few years off. My functional ability was OK and I had some pain, but I wasn't completely disabled.
The damage in both shoulders was equally bad. The surgeon explained that there comes a time where surgery is not possible as there is not enough of your own bone to work with and the repair can't be done. If I waited too long, I wouldn't be able to even have the surgery as my shoulders were deteriorating at a fairly rapid rate.
Given his people skills, it then turned into an awkward and - in retrospect - funny conversation. He asked me if I wanted to book a date for my TSR (total shoulder replacement) now, or if I wanted to think about it. I felt like I was buying a car - you know that pressure to make a decision right then and there? Strange concept to apply to your healthcare. I said I needed to think about it and would call for another appointment when I had made a decision.
And then I left the exam room with John and I started sobbing. Full-body sobs. We walked around the hospital in all the wrong directions trying to get out to our car, but not really knowing where we were going. This was the first time that I ever remember being in shock. This news wasn't mine. I was too young, I mean who has a TSR at the ripe old age of 33?
This day easily made my worst top 5 days ever.
Monday, November 23, 2009
I used to be able to do that....
It's a slippery slope down the "I used to be able to do that" path. One day you can't seem to raise your arms high enough to wash your hair properly and it causes you to think for a moment - I used to be able to wash my hair and now I can't... when/how did this happen?
I also used to be able to stretch my wrists so my forearm and palm made an 90 degree angle, but now I can't. How did that happen?
My fingers used to be straight and now they're not. How'd that happen?
Losing my range of motion happened slowly over time and only after enough time has passed that you notice that can't do what you used to. Fortunately for me, the lower half of my body is pain-free with a fantastic range of motion. My upper half, not so much. I can walk, run a little (should, for some reason, I choose to), skip, tread water and twist into some amazing yoga poses that involve my lower half. I will not, however, be breaking any world records for push-ups. My wrists and shoulders have some significant and permanent damage and just don't move that way anymore.
It's funny about losing your range of motion - the current state of my wrists have become my new "normal" and I accept them as is. I don't really remember the time when they were able to do more for me. I am grateful that I can walk without any mobility aids. I love my independence. I remember when I wasn't so able-bodied, and that makes me appreciate the here and now even more.
With experience over the past 18 years of RA, I'm now more proactive with my health care. I feel that I could have been more on the ball with my wrists, in retrospect. It happens so slowly that you only see it years later. From this experience, I am very aware of how my legs, knees, ankles and feet are doing, and any changes I raise with my rheumatologist. I've learned a hard lesson on early intervention and active care for your joints. They can replace some - but not all - and I'm not aspiring to become the bionic woman!
I also used to be able to stretch my wrists so my forearm and palm made an 90 degree angle, but now I can't. How did that happen?
My fingers used to be straight and now they're not. How'd that happen?
Losing my range of motion happened slowly over time and only after enough time has passed that you notice that can't do what you used to. Fortunately for me, the lower half of my body is pain-free with a fantastic range of motion. My upper half, not so much. I can walk, run a little (should, for some reason, I choose to), skip, tread water and twist into some amazing yoga poses that involve my lower half. I will not, however, be breaking any world records for push-ups. My wrists and shoulders have some significant and permanent damage and just don't move that way anymore.
It's funny about losing your range of motion - the current state of my wrists have become my new "normal" and I accept them as is. I don't really remember the time when they were able to do more for me. I am grateful that I can walk without any mobility aids. I love my independence. I remember when I wasn't so able-bodied, and that makes me appreciate the here and now even more.
With experience over the past 18 years of RA, I'm now more proactive with my health care. I feel that I could have been more on the ball with my wrists, in retrospect. It happens so slowly that you only see it years later. From this experience, I am very aware of how my legs, knees, ankles and feet are doing, and any changes I raise with my rheumatologist. I've learned a hard lesson on early intervention and active care for your joints. They can replace some - but not all - and I'm not aspiring to become the bionic woman!
Tuesday, November 17, 2009
Dreaded Tuesdays
Weeks pass - they come and go. Life is busy with work, family, friends, groceries, errands and everything in between. For some reason, every Tuesday, the world stands still just a little. Tuesday night is the dreaded Enbrel night. I started taking Enbrel in June of this year, to combat some of the damage RA has wreaked on my body. So far I have 1 replaced shoulder with one to go. I'd like to keep the joint replacements to a minimum, if possible.
Every Tuesday after dinner, I start thinking about it. And dreading it. Given my medical history of shoulder replacement, countless vials of blood, gestational diabetes and untold numbers of joint injections you would think that a little needle each week would not be an insurmountable task. Well, some weeks it is. At the beginning I would sit on the edge of my bed staring at my thigh for 20 minutes, willing myself to just get on with it. Other times, I would have my husband sit next to me so I would move it along a little faster.
It doesn't hurt that much. But I dread it nonetheless. In a week of moving from one thing to the next, and ignoring my RA, this causes me to pause and take a moment to consider my health. Sometimes I just don't want to do that.
Lately I've been getting better. The dread starts as I head up the stairs for bed. I quickly gather my alcohol wipes, kleenex (for the bleeders I have sometimes), a band-aid and my auto-injector of Enbrel. I take less than 3 minutes these days, and just right down to business. 1,2,3 and in she goes. I'm getting better at it, but that doesn't mean that I like it...
Every Tuesday after dinner, I start thinking about it. And dreading it. Given my medical history of shoulder replacement, countless vials of blood, gestational diabetes and untold numbers of joint injections you would think that a little needle each week would not be an insurmountable task. Well, some weeks it is. At the beginning I would sit on the edge of my bed staring at my thigh for 20 minutes, willing myself to just get on with it. Other times, I would have my husband sit next to me so I would move it along a little faster.
It doesn't hurt that much. But I dread it nonetheless. In a week of moving from one thing to the next, and ignoring my RA, this causes me to pause and take a moment to consider my health. Sometimes I just don't want to do that.
Lately I've been getting better. The dread starts as I head up the stairs for bed. I quickly gather my alcohol wipes, kleenex (for the bleeders I have sometimes), a band-aid and my auto-injector of Enbrel. I take less than 3 minutes these days, and just right down to business. 1,2,3 and in she goes. I'm getting better at it, but that doesn't mean that I like it...
Sunday, November 15, 2009
Motherhood & RA
I have 2 beautiful, healthy and happy kids - who have a lot of questions. Patrick is 4.5 and very observant and starting to ask questions.
What is that box in the fridge for mommy? (that would be my Enbrel).
What does that thing on your wrist do? (that would be my wrist splint from a recent flare).
Do you still have an owie on your shoulder? Can I kiss it better? (that would be my 5 inch scar on my left shoulder from my total shoulder replacement in May.)
Why are you so tired mommy, do you need a nap? (that one could be asked daily)
While they are too young now, what do I tell them about mommy’s ongoing "owie"? How would they ever understand? I’m not sure I understand. I can just hear Patrick’s inevitable question “Why?” - taken to the nth degree as only 4 year old can. For now, I'm sticking with the basics of mommy needs some extra medication to help her. I think that is enough, for now.
I worry, though, about the future. How will my RA progress? What will/won't I be able to do? Will I be able to dance at Patrick's wedding? And worst of all - every parent's nightmare - will they also get (J)RA?
I know consciously I need to focus on the here and now, and not live in the future. But my sub conscious has a mind of its own, and still, I worry ...
What is that box in the fridge for mommy? (that would be my Enbrel).
What does that thing on your wrist do? (that would be my wrist splint from a recent flare).
Do you still have an owie on your shoulder? Can I kiss it better? (that would be my 5 inch scar on my left shoulder from my total shoulder replacement in May.)
Why are you so tired mommy, do you need a nap? (that one could be asked daily)
While they are too young now, what do I tell them about mommy’s ongoing "owie"? How would they ever understand? I’m not sure I understand. I can just hear Patrick’s inevitable question “Why?” - taken to the nth degree as only 4 year old can. For now, I'm sticking with the basics of mommy needs some extra medication to help her. I think that is enough, for now.
I worry, though, about the future. How will my RA progress? What will/won't I be able to do? Will I be able to dance at Patrick's wedding? And worst of all - every parent's nightmare - will they also get (J)RA?
I know consciously I need to focus on the here and now, and not live in the future. But my sub conscious has a mind of its own, and still, I worry ...
Friday, October 30, 2009
My love/hate relationship with Prednisone
I've been on varying doses of prednisone for about 12 years. Some times at 5 mg a day, sometimes at 20 mg a day. As with most prednisone stories, it started with love. I clearly remember the first day I was on prednisone. I had been on 8 aspirin a day to control my symptoms, but still, every day, my mom had to do my hair in a pony tail, help me get dressed and drive me to school. I couldn't walk that far and lifting my hands over my head was simply not possible. I remember writing my grade 10 year end exams where my fingers would stick in the shape of how I was holding my pen, and I would have to physically pry them open. At the time, I thought it was funny. Now - not so much.
I remember taking prednisone at night and waking up a whole new person. I could walk, better yet - I could run! I felt like I was myself again. I'd been a member of the basketball and volley ball teams a mere 4 months ago and then I couldn't walk to school. Little did I know the long-term cost of this new-found freedom.
My love affair continued when I wanted to have kids. Most anti-arthritic and immunosupressant meds don't mix with pregnancy - so prednisone at a higher dose is one of the few options available. During my pregnancy things went swimmingly, until I was diagnosed with gestational diabetes and for my second munchkin, I went on insulin. My daughter was born 5.5 weeks early, and my amniotic fluid was leaking for 1 week prior to delivery. It turns out, it was great that I was on prednisone, as they generally give steroids when babies are premature to help with lung development. In my case, I'd been on steroids for the duration of the pregnancy, so Chelsea's lungs were just fine. This is one of the very few favours prednisone has ever done for me.
My relationship with prednisone started to deteriorate when I really started paying attention to the side effects. I'd been on the drug so long, I didn't really notice that I have "mood swings" - although that seems like an understatement. I don't know that I recognized them for what they really are - hard to control fits of strong emotion that require a conscious effort to keep in check. I also have a sizable "hump" on the back of my neck - but since I don't see it all the time, I don't notice it.
I love it and I hate it. Right now now I'm slowing ending the relationship, one less mg per month. If all goes according to plan, April 1st, 2010 I will be be prednisone-free. Keep your fingers crossed.
I remember taking prednisone at night and waking up a whole new person. I could walk, better yet - I could run! I felt like I was myself again. I'd been a member of the basketball and volley ball teams a mere 4 months ago and then I couldn't walk to school. Little did I know the long-term cost of this new-found freedom.
My love affair continued when I wanted to have kids. Most anti-arthritic and immunosupressant meds don't mix with pregnancy - so prednisone at a higher dose is one of the few options available. During my pregnancy things went swimmingly, until I was diagnosed with gestational diabetes and for my second munchkin, I went on insulin. My daughter was born 5.5 weeks early, and my amniotic fluid was leaking for 1 week prior to delivery. It turns out, it was great that I was on prednisone, as they generally give steroids when babies are premature to help with lung development. In my case, I'd been on steroids for the duration of the pregnancy, so Chelsea's lungs were just fine. This is one of the very few favours prednisone has ever done for me.
My relationship with prednisone started to deteriorate when I really started paying attention to the side effects. I'd been on the drug so long, I didn't really notice that I have "mood swings" - although that seems like an understatement. I don't know that I recognized them for what they really are - hard to control fits of strong emotion that require a conscious effort to keep in check. I also have a sizable "hump" on the back of my neck - but since I don't see it all the time, I don't notice it.
I love it and I hate it. Right now now I'm slowing ending the relationship, one less mg per month. If all goes according to plan, April 1st, 2010 I will be be prednisone-free. Keep your fingers crossed.
Early Days
After I was diagnosed, I was admitted to Sick Kids for 2 weeks for treatment - I was in pretty rough shape. I had 8 cortisone joint injections in 8 joints in one day, because the lack of mobility and significant inflammation in all of my joints warranted some aggressive treatment. My wrists, my knees, my ankles and my shoulders. I remember being on the treatment table, staring up into the ceiling where there were purple butterfly decals stuck there. Given the 8 needles going into my body 1 by 1, who the hell thought butterflies on the ceiling would help any kid with that kind of pain?
My parents came to visit. My mom during the day, and dad would stop by at night after work. It was hard on all of us, likely more for my parents than for me. I, of course, didn't see that at the time. But now that I am a parent myself, I would go out of my mind if either of my children had to go through what I did.
I remember one night, my dad came to visit after work. He was a little tired from a long day, and I was wheelchair bound from the 8 joint injections. I was itching to walk, he wanted to sit. We cruised around the ground floor of Sick Kids to the day clinic area. After hours, it was empty. We could talk, laugh, visit. He sat, I walked. And then he invented the pain machine. It worked like this: I would hold his hands and all the pain I had would go to him. As a parent, what else can you do? I still start crying when I think about the pain machine and how hard it must have been for my parents to see me suffering.
Sick Kids put my back on my feet, walking without pain, on better meds and with some physio exercises to keep my range of motion strong. I was armed with knowledge, custom-made resting wrist splints with hot pink velcro and some hope that everything might be ok - at least for a little while.
My parents came to visit. My mom during the day, and dad would stop by at night after work. It was hard on all of us, likely more for my parents than for me. I, of course, didn't see that at the time. But now that I am a parent myself, I would go out of my mind if either of my children had to go through what I did.
I remember one night, my dad came to visit after work. He was a little tired from a long day, and I was wheelchair bound from the 8 joint injections. I was itching to walk, he wanted to sit. We cruised around the ground floor of Sick Kids to the day clinic area. After hours, it was empty. We could talk, laugh, visit. He sat, I walked. And then he invented the pain machine. It worked like this: I would hold his hands and all the pain I had would go to him. As a parent, what else can you do? I still start crying when I think about the pain machine and how hard it must have been for my parents to see me suffering.
Sick Kids put my back on my feet, walking without pain, on better meds and with some physio exercises to keep my range of motion strong. I was armed with knowledge, custom-made resting wrist splints with hot pink velcro and some hope that everything might be ok - at least for a little while.
Begin at the Beginning
I started having shoulder pain in the mornings in the winter of 1991 - not something I gave much thought, chalking it up to usual aches and pains of being a on the junior high school volleyball team. And then volleyball season ended, and my shoulders and wrists still hurt. Off to my family doctor I went and some physio was prescribed, ultrasound on my wrists. The first time I heard arthritis mentioned was by the tech performing the treatment and of course, I said I was too young. And I was, wasn't I?
My GP wasn't sure so he sent me to an internist who tested me to no avail for 3-4 months. Finally, after a trip to a lupus and chronic disease conference for teenagers in search of some answers, I felt confident that I didn't have lupus (thank God) but was convinced that his course of treatment - or lack thereof - was not doing me any favours. At the time I was on 8 aspirin a day, and then had to take medication for the minor ulcer developing in my 16 year old stomach. The ironies of taking medication for my medication.
At my appointment a few weeks after I got back from the conference, I demanded a referral to Sick Kids in Toronto (I lived in Brampton at the time). Picture a 16 year old demanding a referral for treatment. My mom sat beside me in silent support. With a bit of time and experience with the medical field, I have learned that all doctors are not created equal, and he didn't have a clue. It was an early lesson on being your own health care advocate.
That's how I found myself in a preppy button down cream and navy plaid long sleeved shirt with walking shorts and penny loafers (including the penny) at the Sick Kids rheumatology clinic with a diagnosis within 30 minutes. I remember exactly how I felt (and what I wore) in July of 1991 in the examining room with my parents. I was perplexed that in 30 minutes I could be diagnosed, when the internist had no clue after 4 months.
It was the day that shifted me, my life, my focus and my trajectory permanently. Certainly makes the top 5 worst days of my life, although at the time I didn't really see that. I was simply grateful that relief was in sight.
My GP wasn't sure so he sent me to an internist who tested me to no avail for 3-4 months. Finally, after a trip to a lupus and chronic disease conference for teenagers in search of some answers, I felt confident that I didn't have lupus (thank God) but was convinced that his course of treatment - or lack thereof - was not doing me any favours. At the time I was on 8 aspirin a day, and then had to take medication for the minor ulcer developing in my 16 year old stomach. The ironies of taking medication for my medication.
At my appointment a few weeks after I got back from the conference, I demanded a referral to Sick Kids in Toronto (I lived in Brampton at the time). Picture a 16 year old demanding a referral for treatment. My mom sat beside me in silent support. With a bit of time and experience with the medical field, I have learned that all doctors are not created equal, and he didn't have a clue. It was an early lesson on being your own health care advocate.
That's how I found myself in a preppy button down cream and navy plaid long sleeved shirt with walking shorts and penny loafers (including the penny) at the Sick Kids rheumatology clinic with a diagnosis within 30 minutes. I remember exactly how I felt (and what I wore) in July of 1991 in the examining room with my parents. I was perplexed that in 30 minutes I could be diagnosed, when the internist had no clue after 4 months.
It was the day that shifted me, my life, my focus and my trajectory permanently. Certainly makes the top 5 worst days of my life, although at the time I didn't really see that. I was simply grateful that relief was in sight.
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