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.
Saturday, October 16, 2010
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.
Friday, June 18, 2010
Wonder Woman
Wow, do I feel awesome! How many times do you read that as an opening line for an RA blog? I feel on top of the world. I can conquer 2 kids, a messy storage room and have energy leftover for cooking, cleaning and some working from home. In sum - I am on fire. And my joints are not.
Welcome to the wonderful world of short course, high dose of Prednisone. Oh, the energy. The freedom of movement. The freedom from pain. The freedom to plan. Did I mention the energy?
After a pain-filled, soul-searching two months of 2 mgs of Prednisone, I realized that it is just a number, I value the quality of my life over what my current Prednisone dose is, and I needed to get over my frustration of not fully getting off Prednisone and face the fact that I was flaring and there was nothing else for me to do, other than increase my dose. So after a call to my rheumy, he suggest 10 mg per day for 2 weeks, 7.5 for 2 weeks and 5 until I see him.
This has been a tough pill for me to swallow. I read other bloggers experience with getting off Prednisone as they conveyed their frustrations and thought, "that, of course, won't happen to me", fully expecting that I would march down the road to being Prednisone-free in 10 smooth months. I had a plan, afterall, and I am a planner. What could possibly go wrong?
Well, as usual. RA had other plans for me, as it usually does. So I am now enjoying my Prednisone-induced pain-free time, knowing that I will try again. And again. And I will be free one day, just not today.
Welcome to the wonderful world of short course, high dose of Prednisone. Oh, the energy. The freedom of movement. The freedom from pain. The freedom to plan. Did I mention the energy?
After a pain-filled, soul-searching two months of 2 mgs of Prednisone, I realized that it is just a number, I value the quality of my life over what my current Prednisone dose is, and I needed to get over my frustration of not fully getting off Prednisone and face the fact that I was flaring and there was nothing else for me to do, other than increase my dose. So after a call to my rheumy, he suggest 10 mg per day for 2 weeks, 7.5 for 2 weeks and 5 until I see him.
This has been a tough pill for me to swallow. I read other bloggers experience with getting off Prednisone as they conveyed their frustrations and thought, "that, of course, won't happen to me", fully expecting that I would march down the road to being Prednisone-free in 10 smooth months. I had a plan, afterall, and I am a planner. What could possibly go wrong?
Well, as usual. RA had other plans for me, as it usually does. So I am now enjoying my Prednisone-induced pain-free time, knowing that I will try again. And again. And I will be free one day, just not today.
Sunday, May 30, 2010
Denile is more than a river
Denial is a state of mind, and a lovely place to live, I might add. For a few weeks (months?) I have been feeling a little under the weather. Less energy, pain in my feet which has now spread to my right hand. I wake up with a claw-like right hand that takes some coaxing to get moving in the morning - and it seems to be taking longer and longer for it to get going. I can see the puffiness and feel the pain. This morning I found myself asking my son to be careful with my hand - and that was an hour after I woke up. Hmm, that was a bit of a wake-up call for me.
I think I've been in denial about this flare for a while. I have moved passed "compromising" with my Prednisone, and have gone to full "capitulating". I am taking 2 mgs per day of Prednisone and still taking a double dose of Dicofinac. And am trying to talk myself of out of calling my rheumatologists' office to move up my appointment from mid-July. I am also trying to ignore the fact that certain shoes (even my trusty old runners) make my feet scream because they are squished and Crocs or flip flops are my best friends.
I've been dealing with RA for 19 years and still I am baffled as to why I flare. In my mind, if I get enough sleep, don't drink too much, don't over or under exert myself, eat well, take my meds, lower my stress and laugh a little that I will somehow manage to not flare. It seems that my RA isn't responding to my formula for health. And it's frustrating.
It's not my worst flare, it's not my best, but a flare by any other name still hurts the same.
I think I've been in denial about this flare for a while. I have moved passed "compromising" with my Prednisone, and have gone to full "capitulating". I am taking 2 mgs per day of Prednisone and still taking a double dose of Dicofinac. And am trying to talk myself of out of calling my rheumatologists' office to move up my appointment from mid-July. I am also trying to ignore the fact that certain shoes (even my trusty old runners) make my feet scream because they are squished and Crocs or flip flops are my best friends.
I've been dealing with RA for 19 years and still I am baffled as to why I flare. In my mind, if I get enough sleep, don't drink too much, don't over or under exert myself, eat well, take my meds, lower my stress and laugh a little that I will somehow manage to not flare. It seems that my RA isn't responding to my formula for health. And it's frustrating.
It's not my worst flare, it's not my best, but a flare by any other name still hurts the same.
Tuesday, May 4, 2010
Compromise
Ever since I moved to 1 mg of Prednisone per day, I've been struggling with various joints. It's now getting onto 7 weeks, I just haven't been moving well - creaky knees, sandpaper hips, curled up fingers. In late March, I talked to my rheumy and we agreed to change my Diclofinac to Naproxen and see how things would go as I didn't think the Diclofinac was doing very much. Well, they didn't go much better with the Naproxen and throw in some stomach issues, to boot. So after a call to my rheumy, he suggested I take my Diclofinac twice daily. And I move my prednisone up to 2 mg. I said no to the Prednisone but yes to the increase of Diclofinac.
The Diclofinac is not doing much better at two times per day . . . and it got me to thinking about my relationship with Prednisone. I have the perception that Prednisone is the root of all evil and the giver of life at the same time. I do not like all the side effects I have experienced and some I continue to experience, however I love the way it helps me move significantly better.
I talked to my hubby - his thoughts were that it is just a number (2 mgs instead of 1 mg) and my quality of life would improve. In the end, he is right. It's just a number and I shouldn't get too attached to it. I will get off Prednisone soon enough, but not this week or this month. I think I am holding on to this so much because it is the one thing that I can control, and while it doesn't make sense to live in pain because I want to take 1 mg of Prednisone, it seems that is what I am doing.
So, I compromised (caved?). I'm alternating days of 1 mg and 2 mg. I took my first 2 mgs last night before bed and woke up a new woman - well at least there was no obvious pain and I didn't creak as much as I used to. Damn you, Prednisone, for making me feel better . . .
The Diclofinac is not doing much better at two times per day . . . and it got me to thinking about my relationship with Prednisone. I have the perception that Prednisone is the root of all evil and the giver of life at the same time. I do not like all the side effects I have experienced and some I continue to experience, however I love the way it helps me move significantly better.
I talked to my hubby - his thoughts were that it is just a number (2 mgs instead of 1 mg) and my quality of life would improve. In the end, he is right. It's just a number and I shouldn't get too attached to it. I will get off Prednisone soon enough, but not this week or this month. I think I am holding on to this so much because it is the one thing that I can control, and while it doesn't make sense to live in pain because I want to take 1 mg of Prednisone, it seems that is what I am doing.
So, I compromised (caved?). I'm alternating days of 1 mg and 2 mg. I took my first 2 mgs last night before bed and woke up a new woman - well at least there was no obvious pain and I didn't creak as much as I used to. Damn you, Prednisone, for making me feel better . . .
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