At work I am an HR professional. Those helpful, happy people who interview, answer questions and listen to the needs of the employees. Some days, I don't really want to listen to people complain, as, in my estimation, they don't have anything to complain about. But that wouldn't really be in line with my profession, so I clam up, listen, empathize and offer my expertise.
I find sometimes I use my blog as the complaints department for my RA. I try to find the positive or humourous in my life, but the reality is that there is a dark and depressing side to have an auto-immune disease like RA and I try as best I can to keep it under wraps. Not always, as evidence from my last post. I have 2 complaints and 1 compliment. I thought I would try to balance things out here a little.
My current complaint is about a bald spot. Yep. I'm 35 years old and have a small bald spot on the back of my head. I discovered it last night while trying to ensure that all of my hair was straight (generally it is curly - not nice curly, just frizzy curly). I wish I didn't look. I don't really want to know that I have a bald spot. I love my hair. There, I said it. I have great hair. I don't brag about much in terms of personal appearance, but I love my hair. Or I love what's left of it. Reflecting back, I'm guessing I've lost about 50% of my hair in the past 2 years. Sigh. I thought I had dodged the "hair-loss" bullet with MTX, but it seems to have hit me square in the back of my head in the form of a bald spot. I will have to mull over how upset I am and how easily I can hide it until my next rheumy appointment in 2 months. I never thought I was that vain, but I'll need to ponder my relationship with MTX...
My second complaint is about the volume of my knee joints. This is a minor and somewhat humourous complaint. I snap, crackle and pop while walking up the stairs - all the time, every time. There is no pain associated with the noise, I just feel a little conspicuous. Like at work, when I'm walking up the stairs and colleagues can hear my knees. Being the HR person means I am generally outgoing, friendly and personable with the staff. So I say hello, ask about their day, talk about their project and even resort to talking about the weather to cover up the cereal-like sounds escaping from my knees. At times it's rather funny. And it doesn't hurt. I smile to myself sometimes thinking of the silly ways I cope with the quirks of my RA.
My compliment is to any friends and family that read this blog and listen to my complaints in real time. It can be very frustrating listening to someone when you cannot help them. Please know that by simply listening that you help. Wheither its calling me after you've read my blog to check in on me or listening to me rant about my inability to open a pasta sauce jar, I appreciate you taking the time to listen over and over again.
PS - Like the new look? New year, new layout!
Wednesday, January 19, 2011
Wednesday, December 22, 2010
White room, dark thoughts
I think most of my rheumatology appointments make me stop and pause. Here you are, in the white room, waiting for the white-coat doctor with nothing except your thoughts to entertain you. I find that I pause to think about my RA, and how it brought me to this room at this time. It's just so upsetting when you stop to think of the totality of what I've been through and what it has cost me.
In life choices that you make, you never really know the road not taken. You don't know how your life would have turned out if you had not started a job, made a friend or been diagnosed with a different disease - or no disease at all, for that matter. But every now and then I catch glimpses of what life might have been like and I feel a strong sense of loss. I see my friends who are active, have energy and don't have to portion their day out based on the energy they have for what they want to do vs. what they have the energy for. Why do I have to choose?
Here's the thing I've been wanting to write about for a while, but the words just haven't been there. I am so ANGRY with my RA. My life, my job, my children, my husband, my parents, my brother, my friends have all been impacted by this disease. I feel that some of my life choices are not my own and most days I put on a smiley face and get through it - whatever the "it" happens to be that day. Not today. A storm has set in, and I can only see the black clouds, not the silver lining.
I am jealous, angry, grieving. I am bone-weary, empty, afraid.
I am glad to get this out of my system. As I've written before, I'm grateful for the one-way communication that a blog affords. It may or may not be heard, but I feel better having said it.
In life choices that you make, you never really know the road not taken. You don't know how your life would have turned out if you had not started a job, made a friend or been diagnosed with a different disease - or no disease at all, for that matter. But every now and then I catch glimpses of what life might have been like and I feel a strong sense of loss. I see my friends who are active, have energy and don't have to portion their day out based on the energy they have for what they want to do vs. what they have the energy for. Why do I have to choose?
Here's the thing I've been wanting to write about for a while, but the words just haven't been there. I am so ANGRY with my RA. My life, my job, my children, my husband, my parents, my brother, my friends have all been impacted by this disease. I feel that some of my life choices are not my own and most days I put on a smiley face and get through it - whatever the "it" happens to be that day. Not today. A storm has set in, and I can only see the black clouds, not the silver lining.
I am jealous, angry, grieving. I am bone-weary, empty, afraid.
I am glad to get this out of my system. As I've written before, I'm grateful for the one-way communication that a blog affords. It may or may not be heard, but I feel better having said it.
Saturday, October 30, 2010
Happy Blog-iversary!
It's been a year. Wow! Yeah for me!
I've taken some time to read over my musings from the past year, and take note of how I've grown and things have changed. A year ago I was literally tormented by needing to resign from work - now I am happily employed in the hi-tech world working with more great people. My family is great, I am on roughly the same medication, swapping out Enbrel and inserting Humira, and hoping to reduce some Prednisone. But really, what's new about that? Reducing my Prednisone seems to be an ongoing theme throughout my posts - like that closet you never seem to clean out. I'm sure I'll get there someday, but right now I'm not in a big rush...
So what is the biggest difference?
I think focus and control. I am less focused on my arthritis and more focused on my life, I have found a level of balance I am comfortable with. While life is busier with working almost full time - I feel I have more control over it. Work offers flexible hour, which is new for me. If I am 5 minutes late, there is no issue. I can take a longer lunch, I can come and go when I need to and they know I am a professional who will take care of my work. This is new and wonderful for me. Small amounts of control can make a big difference.
I'm proud of what I have written. When I re-read it, it certainly continues to reflect me and my journey. I am grateful for the support of my RA blogging friends. Your comments and posts remind me that there are others out there with the same struggles, frustrations and sources of humour.
I read a post tonight (ok, I'm behind on my blog reading), but Lauri Grassi had a post almost two months ago about MTX bubbling up over her leg, and I laughed out loud. It happens to me all the time and it's comforting to know it happens to others.
Thank you for listening, and commenting. I'm looking forward to another year of growing, learning, making new blog friends and keeping up with the old ones.
I've taken some time to read over my musings from the past year, and take note of how I've grown and things have changed. A year ago I was literally tormented by needing to resign from work - now I am happily employed in the hi-tech world working with more great people. My family is great, I am on roughly the same medication, swapping out Enbrel and inserting Humira, and hoping to reduce some Prednisone. But really, what's new about that? Reducing my Prednisone seems to be an ongoing theme throughout my posts - like that closet you never seem to clean out. I'm sure I'll get there someday, but right now I'm not in a big rush...
So what is the biggest difference?
I think focus and control. I am less focused on my arthritis and more focused on my life, I have found a level of balance I am comfortable with. While life is busier with working almost full time - I feel I have more control over it. Work offers flexible hour, which is new for me. If I am 5 minutes late, there is no issue. I can take a longer lunch, I can come and go when I need to and they know I am a professional who will take care of my work. This is new and wonderful for me. Small amounts of control can make a big difference.
I'm proud of what I have written. When I re-read it, it certainly continues to reflect me and my journey. I am grateful for the support of my RA blogging friends. Your comments and posts remind me that there are others out there with the same struggles, frustrations and sources of humour.
I read a post tonight (ok, I'm behind on my blog reading), but Lauri Grassi had a post almost two months ago about MTX bubbling up over her leg, and I laughed out loud. It happens to me all the time and it's comforting to know it happens to others.
Thank you for listening, and commenting. I'm looking forward to another year of growing, learning, making new blog friends and keeping up with the old ones.
Saturday, October 16, 2010
Well, that was kinda stupid
So, I am usually a pretty smart cookie. I am intelligent, educated, intuitive, learned person. Most of the time. About a month ago, I started my Humira injections. And I incorrectly placed and injected one of my vials. Umm, that was an $871.00 mistake. The auto-injector is different from Enbrel (which is idiot proof, as it turns out, since I didn't have a misfire in 15 months of weekly injections).
So I used the 2nd injector of my 1 month supply and thought I would deal with it later. And "later" never came. And it was a sad Thursday before Thanksgiving almost 4 weeks later, when I was in so much pain at work at 5:30 pm which prompted me to call my pharmacy and renew my prescription.
I am working now, and much busier. If all my family members show up where they are supposed to, when they are supposed to and everyone is fed, I am considering that a successful week. But I can't recall a time when I was too busy to take care of my health. I could have called the drug company and asked for another dose. I could have called my benefits provider. I could have done something. But it wasn't until the pain kicked in that I actually did something. I'm still not sure what to think about that, it's just so not me.
On a side note, the week after my first Humira injection I felt like a rock star - I'm looking forward to what the next couple of months have to bring.
So I used the 2nd injector of my 1 month supply and thought I would deal with it later. And "later" never came. And it was a sad Thursday before Thanksgiving almost 4 weeks later, when I was in so much pain at work at 5:30 pm which prompted me to call my pharmacy and renew my prescription.
I am working now, and much busier. If all my family members show up where they are supposed to, when they are supposed to and everyone is fed, I am considering that a successful week. But I can't recall a time when I was too busy to take care of my health. I could have called the drug company and asked for another dose. I could have called my benefits provider. I could have done something. But it wasn't until the pain kicked in that I actually did something. I'm still not sure what to think about that, it's just so not me.
On a side note, the week after my first Humira injection I felt like a rock star - I'm looking forward to what the next couple of months have to bring.
Monday, September 6, 2010
What makes a good appointment?
I had one of the best medical appointments of recent memory last week with my new rheumatologist. He talked, I listened. I talked, he listened. It was an actual conversation between two people on equal footing. Communication, understanding, and a dash of compassion made for one fantastic discussion about my healthcare.
Dr. Kraag started with asking me about myself. What a novel idea. Married? Kids? Job? Medical history? And he didn't outwardly groan when I mentioned I had a list of things to talk to him about. Hey, I was almost 2 months overdue for an appointment, there was a backlog of items on my list!
We talked about my Enbrel and how I thought it wasn't working. I have been on it for 15 months and am not much further ahead physiologically than I was before taking it. I am significantly behind financially - we only had a co-pay of 80%. In my new job, we can coordinate benefits, and I will be 100% covered. So, Humira is next on the list, pending approval from my medical plan.
We talked about Methotrexate injections vs. oral dosing. A big shout out to Laurie Grassi and her Frozen Woman blog, for posting about MTX injections and providing me with information on a study comparing the two methods of administration for this drug. The results of the study indicate a higher level of absorption through injection over oral dosing, without a significant increase in the number or severity of the side effects.
It seems odd that I would ask my doctor to self-inject another needle each week, but I did. The first dose took me 15 minutes to administer. 14 mins and 45 seconds was me counting to 3, and then starting the count again until I mustered up the courage to "take the plunge" as it were. Amazingly, it hurt much less then Enbrel injections as the needle is very fine. I won't go as far to say that it was enjoyable, however it was much more tolerable. Next week should be much better.
We talked about my joints, their damage and he took a look at all of the x-rays the hospital had on file for me. A picture is worth a thousand words, so I'll share a few of his observations with you:
"Do your wrists hurt? No? Well they should, you have no room in there."
"Wow, Lapner did a great job on your shoulder."
"Uh, hunh. Look at those feet. Well that's not good, is it?"
While this was hard to hear, it was great that he had direct access to my films and could pull them up instantly. My last rheumy was in an office, not attached to the hospital, so all he would see is the radiologists report. I think there is something to be said for seeing the pics first hand, in my case the x-rays are rather startling.
We talked about Vitamin D, Calcium supplements and Actenol. He was professionally surprised (read: shocked that my rheumy didn't have me on a preventative plan for osteoporosis, but didn't say much because they are colleagues). I was going for bone scans on a regular basis due to the 16 year use of Prednisone, however this is a reactive test, not a preventative treatment. So, now I am on 1000 mg of Calcium and Vitamin D, and taking one Actenol per month for to keep my bones healthy and strong.
I have a note for an ergo keyboard for work. I have a spring in my step. I have an appointment scheduled in 3 months. I have a plan of action I am excited about. I have a glimmer in my eye that soon, very soon, Prednisone and I may be parting ways on a permanent basis. I have a super new job. I have some hope that my health care moving forward will be proactive and preventative not reactive and palliative. This makes a good appointment.
Dr. Kraag started with asking me about myself. What a novel idea. Married? Kids? Job? Medical history? And he didn't outwardly groan when I mentioned I had a list of things to talk to him about. Hey, I was almost 2 months overdue for an appointment, there was a backlog of items on my list!
We talked about my Enbrel and how I thought it wasn't working. I have been on it for 15 months and am not much further ahead physiologically than I was before taking it. I am significantly behind financially - we only had a co-pay of 80%. In my new job, we can coordinate benefits, and I will be 100% covered. So, Humira is next on the list, pending approval from my medical plan.
We talked about Methotrexate injections vs. oral dosing. A big shout out to Laurie Grassi and her Frozen Woman blog, for posting about MTX injections and providing me with information on a study comparing the two methods of administration for this drug. The results of the study indicate a higher level of absorption through injection over oral dosing, without a significant increase in the number or severity of the side effects.
It seems odd that I would ask my doctor to self-inject another needle each week, but I did. The first dose took me 15 minutes to administer. 14 mins and 45 seconds was me counting to 3, and then starting the count again until I mustered up the courage to "take the plunge" as it were. Amazingly, it hurt much less then Enbrel injections as the needle is very fine. I won't go as far to say that it was enjoyable, however it was much more tolerable. Next week should be much better.
We talked about my joints, their damage and he took a look at all of the x-rays the hospital had on file for me. A picture is worth a thousand words, so I'll share a few of his observations with you:
"Do your wrists hurt? No? Well they should, you have no room in there."
"Wow, Lapner did a great job on your shoulder."
"Uh, hunh. Look at those feet. Well that's not good, is it?"
While this was hard to hear, it was great that he had direct access to my films and could pull them up instantly. My last rheumy was in an office, not attached to the hospital, so all he would see is the radiologists report. I think there is something to be said for seeing the pics first hand, in my case the x-rays are rather startling.
We talked about Vitamin D, Calcium supplements and Actenol. He was professionally surprised (read: shocked that my rheumy didn't have me on a preventative plan for osteoporosis, but didn't say much because they are colleagues). I was going for bone scans on a regular basis due to the 16 year use of Prednisone, however this is a reactive test, not a preventative treatment. So, now I am on 1000 mg of Calcium and Vitamin D, and taking one Actenol per month for to keep my bones healthy and strong.
I have a note for an ergo keyboard for work. I have a spring in my step. I have an appointment scheduled in 3 months. I have a plan of action I am excited about. I have a glimmer in my eye that soon, very soon, Prednisone and I may be parting ways on a permanent basis. I have a super new job. I have some hope that my health care moving forward will be proactive and preventative not reactive and palliative. This makes a good appointment.
Wednesday, August 25, 2010
New job, new house & new rheumatologist
All in one week!
New job - I am back in the workforce on a 15 month contract working 9 of 10 days. While leaving the kiddies is hard, I was craving adult interaction of a business kind. The company I work for now has flex hours (yeah!), 90% drug coverage as opposed to the 80% (yeah!) and is closer to home. A winner all around. Oh, yeah, and the work seems really good as well.
New house - we signed on the dotted line last Saturday for a new home to be built in the same area of Bridlewood (a subdivision in Kanata, which is the west end of Ottawa) where we live. We will move in next August. Making 1000s of decisions about paint, tile, hardwood, electrical and hardware will be time consuming and exhausting, but I hope it is mental exhaustion only, I'm working now - no more afternoon naps!
New rheumy - well it seems a few weeks ago, I received a call from my rheumy's secretary with some not-so-hot news: the office will be closed for 6-9 months and my upcoming appointment is canceled. Go back to your GP for a referral. Oh dear.
Worst phone call ever (ok, that's an overstatement, but it was likely the worst phone call of the month). Nothing drives fear and emotion than the feeling that you don't have access to the health care you need.
So, being both scared and emotional, I cried. I cried to the next 2 people who called me that day. Then I located my bootstraps, pulled them up, and started surfing the web for rheumatologists in the Ottawa area. Several came up on ratemd.com, and I selected one and called the office. I can be a fantastic conversationalist, so I thought I might talk my way into an appointment. Worth a try, I thought.
Well, the number I called was the Ottawa Hospital, and it seems they have an Arthritis Centre. And somehow, living here for 11 years, I never knew this place existed. I felt a little dumb. Actually, very dumb.
The upshot is that I spoke with the clerk there, very nice man, who told me if my family doctor put the referral as "urgent" I would be seen in a month. Awesome. I went off to my family doc a few days later and a phone call with an appointment followed a few days after that. Painless some might say. My appointment is next week.
I was on the verge of asking for a "file review" (read: I want another rheumy to look at my file because I am not convinced that you are the best doc for me) at my next appointment with my old rheumy, so this is a nice way to switch docs without an uncomfortable conversation.
I am 15 months into using Enbrel and I don't feel that much further ahead. Last year I was on 10 mg prednisone daily and 25 mg methotrexate weekly. Now I am on 5 mg prednisone daily, same MTX dose and Enbrel. Somehow, I thought I would be able to drop more MTX or prednisone, given that I am now on Enbrel.
I felt at times like a palliative care patient with my old rheumy. Like I should take my drugs, take my lumps and not complain too much. And that there were absolutely no other drug combos that would help me. So hopefully my new rheumy will entertain some other drug options that may lead me off some prednisone.
Lots of "new" in my life. I am thankful for the "old" who are supportive and loving and helping with all of these transitions.
New job - I am back in the workforce on a 15 month contract working 9 of 10 days. While leaving the kiddies is hard, I was craving adult interaction of a business kind. The company I work for now has flex hours (yeah!), 90% drug coverage as opposed to the 80% (yeah!) and is closer to home. A winner all around. Oh, yeah, and the work seems really good as well.
New house - we signed on the dotted line last Saturday for a new home to be built in the same area of Bridlewood (a subdivision in Kanata, which is the west end of Ottawa) where we live. We will move in next August. Making 1000s of decisions about paint, tile, hardwood, electrical and hardware will be time consuming and exhausting, but I hope it is mental exhaustion only, I'm working now - no more afternoon naps!
New rheumy - well it seems a few weeks ago, I received a call from my rheumy's secretary with some not-so-hot news: the office will be closed for 6-9 months and my upcoming appointment is canceled. Go back to your GP for a referral. Oh dear.
Worst phone call ever (ok, that's an overstatement, but it was likely the worst phone call of the month). Nothing drives fear and emotion than the feeling that you don't have access to the health care you need.
So, being both scared and emotional, I cried. I cried to the next 2 people who called me that day. Then I located my bootstraps, pulled them up, and started surfing the web for rheumatologists in the Ottawa area. Several came up on ratemd.com, and I selected one and called the office. I can be a fantastic conversationalist, so I thought I might talk my way into an appointment. Worth a try, I thought.
Well, the number I called was the Ottawa Hospital, and it seems they have an Arthritis Centre. And somehow, living here for 11 years, I never knew this place existed. I felt a little dumb. Actually, very dumb.
The upshot is that I spoke with the clerk there, very nice man, who told me if my family doctor put the referral as "urgent" I would be seen in a month. Awesome. I went off to my family doc a few days later and a phone call with an appointment followed a few days after that. Painless some might say. My appointment is next week.
I was on the verge of asking for a "file review" (read: I want another rheumy to look at my file because I am not convinced that you are the best doc for me) at my next appointment with my old rheumy, so this is a nice way to switch docs without an uncomfortable conversation.
I am 15 months into using Enbrel and I don't feel that much further ahead. Last year I was on 10 mg prednisone daily and 25 mg methotrexate weekly. Now I am on 5 mg prednisone daily, same MTX dose and Enbrel. Somehow, I thought I would be able to drop more MTX or prednisone, given that I am now on Enbrel.
I felt at times like a palliative care patient with my old rheumy. Like I should take my drugs, take my lumps and not complain too much. And that there were absolutely no other drug combos that would help me. So hopefully my new rheumy will entertain some other drug options that may lead me off some prednisone.
Lots of "new" in my life. I am thankful for the "old" who are supportive and loving and helping with all of these transitions.
Friday, July 30, 2010
How big of a deal?
I'm back from vacation (East Coast of Canada - very beautiful, I've never been before), and have had lots of time to think and reflect in the 4,200 kms of driving that we did in 10 days.
Some days, my RA seems like quite a small deal. Life is humming along, my joints are good, no side effects in sight. It's just all tickety-boo. No big deal.
Other days, weeks, months, it is a very big deal. I am tired. I am flaring. I'm having side effects from my meds. I feel physically and emotionally like crap.
Where is the balance? How big of a deal is it? That is what is bouncing around in my head. I don't want it to be a big deal - but it is. I've spent the majority of my adult life trying to put my RA in a neat and tidy closet and closing the door, putting on the padlock and all but throwing away the key. I didn't really talk about it. I didn't really address it. I took my meds, went to my appointments and life carried on. I didn't discuss it with friends, co-workers and barely my family.
And then my life and my RA started intersecting. I wanted to have a baby - so off to the rheumatologist to take me off some meds (methotrexate) and put me on some meds (more Prednisone). And then I was pregnant and considered high risk, but both of my pregnancies went along quite well. I didn't flare, nor did I have a remission. Par for the course.
And then I couldn't really wash my hair that well. And I couldn't really lift my arms up that high. And then I had my shoulder replaced.
Looking back, I think my appointment in December 2008 with the Orthopedic surgeon (when I was told a joint replacement was in order) was one of the defining moments of my life. Pretty big statement, but it was a pretty big day. Up to that point in my life, I don't know that I really understood the magnitude of the disease and it's role in my life. I spent so much time trying to not let it have any part of my life, and I dismissed and downplayed any part it that may have impacted my life.
I have RA. It hurts. It impacts every aspect of my life. My marriage. My children. My friends. My childhood. My future. Some days more, some days less. But it is always there, lurking like a shadow. I don't want RA to consume my life, but I am moving closer to finding the right amount of space for it in my life.
Some days, my RA seems like quite a small deal. Life is humming along, my joints are good, no side effects in sight. It's just all tickety-boo. No big deal.
Other days, weeks, months, it is a very big deal. I am tired. I am flaring. I'm having side effects from my meds. I feel physically and emotionally like crap.
Where is the balance? How big of a deal is it? That is what is bouncing around in my head. I don't want it to be a big deal - but it is. I've spent the majority of my adult life trying to put my RA in a neat and tidy closet and closing the door, putting on the padlock and all but throwing away the key. I didn't really talk about it. I didn't really address it. I took my meds, went to my appointments and life carried on. I didn't discuss it with friends, co-workers and barely my family.
And then my life and my RA started intersecting. I wanted to have a baby - so off to the rheumatologist to take me off some meds (methotrexate) and put me on some meds (more Prednisone). And then I was pregnant and considered high risk, but both of my pregnancies went along quite well. I didn't flare, nor did I have a remission. Par for the course.
And then I couldn't really wash my hair that well. And I couldn't really lift my arms up that high. And then I had my shoulder replaced.
Looking back, I think my appointment in December 2008 with the Orthopedic surgeon (when I was told a joint replacement was in order) was one of the defining moments of my life. Pretty big statement, but it was a pretty big day. Up to that point in my life, I don't know that I really understood the magnitude of the disease and it's role in my life. I spent so much time trying to not let it have any part of my life, and I dismissed and downplayed any part it that may have impacted my life.
I have RA. It hurts. It impacts every aspect of my life. My marriage. My children. My friends. My childhood. My future. Some days more, some days less. But it is always there, lurking like a shadow. I don't want RA to consume my life, but I am moving closer to finding the right amount of space for it in my life.
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