Friday, November 22, 2013
Wednesday, November 20, 2013
It Gets Better!
When I was newly diagnosed with EDS, I joined a local support group. One of the most helpful things I heard came from a woman who had been dealing with EDS for many years. She shared with me that she had been going through a rough time with it lately and that she wasn't down about it because she had been there before and climbed that hill before.
At the time, I was feeling like my symptoms were at their worst and my life had changed drastically from what it was. I was afraid this change might be permanent. She gave me hope that it could turn around.
Lately, over the last couple of months, I think I have had more bad days than normal. I can stay positive because just as my life found a more normal place than it was at the time I mentioned before, it will again.
I may have to find new ways to exercise or practice patience with myself, but it always turns around.
I wanted to share that with you because over the last ten years, I have gone back to that conversation many times to remind myself that things will be ok. Maybe there's someone else out there who is feeling uncertain about EDS right now and needs some assurance. It will get better!!!
At the time, I was feeling like my symptoms were at their worst and my life had changed drastically from what it was. I was afraid this change might be permanent. She gave me hope that it could turn around.
Lately, over the last couple of months, I think I have had more bad days than normal. I can stay positive because just as my life found a more normal place than it was at the time I mentioned before, it will again.
I may have to find new ways to exercise or practice patience with myself, but it always turns around.
I wanted to share that with you because over the last ten years, I have gone back to that conversation many times to remind myself that things will be ok. Maybe there's someone else out there who is feeling uncertain about EDS right now and needs some assurance. It will get better!!!
Wednesday, September 5, 2012
The Pain Chronicles: Take 1
One of the goals of my blog is to create an outlet for me to share what I experience with EDS with the people who care about me.
I've mentioned before that Melanie Thernstrom's 2010 book, The Pain Chronicles was a wonderfully uplifting and informative book. I thought it would be interesting to share some of the parts of it that spoke to me and what it meant to me.
Here are a few quotes from the beginning of the book.
(page 5)
To be in physical pain is to find yourself in a different real--a state of being unlike any other, a magic mountain as far removed from the unfamiliar world as a dreamscape. Usually, pain subsides; one walks from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life?
I know this feeling all too well. Sometimes I feel like the pain has consumed my life. It can make me feel like I would rather be alone than to have to somehow explain the pain to someone else or experience it in their presence. When I feel like it's been a while since I've felt like myself, I start to wonder when my life will possibly become familiar again. I do maintain though, that no matter whether the good days out weigh the bad or the other way around, that the not-so-painful days are my familiar days. I hope I never get to the point that the painful days are what feel normal.
This may seem dreary, but it's comforting to know that these feelings are a normal part of this process.
(page 6)
In one survey, most chronic pain patients said that their pain was "a normal part of their medical condition and something with which they must live." One-third of the patients said that their pain's severity was "sometimes so bad [they] want to die." Almost one-half said they would spend all they have on treatment if they could be assured it would banish their pain.
Again, it's nice to see numbers like one-third and one-half. Feels less lonely or like "exile." It's been a tough pill to swallow that, in my twenties, I cut down my hours at work and started letting someone else clean my house. This is my equivalent of throwing all my money at treatment-since less physical work means better quality life.
There was a lot of self-worth wrapped up in doing things for myself. That's something I have come to realize that I just need to do in order to feel better. What good is working all the time if I feel like half of a person when I'm struggling through the work-day and less of a person than that when I finally make it home in the evening. It is getting easier to accept this feat. It certainly helps that there is a notable difference in the way I feel.
I look forward to more posts from this book. I think she did a great job of blending enough personal information, like the above quotes, with scientific information- which will be coming soon.
I've mentioned before that Melanie Thernstrom's 2010 book, The Pain Chronicles was a wonderfully uplifting and informative book. I thought it would be interesting to share some of the parts of it that spoke to me and what it meant to me.
Here are a few quotes from the beginning of the book.
(page 5)
To be in physical pain is to find yourself in a different real--a state of being unlike any other, a magic mountain as far removed from the unfamiliar world as a dreamscape. Usually, pain subsides; one walks from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life?
I know this feeling all too well. Sometimes I feel like the pain has consumed my life. It can make me feel like I would rather be alone than to have to somehow explain the pain to someone else or experience it in their presence. When I feel like it's been a while since I've felt like myself, I start to wonder when my life will possibly become familiar again. I do maintain though, that no matter whether the good days out weigh the bad or the other way around, that the not-so-painful days are my familiar days. I hope I never get to the point that the painful days are what feel normal.
This may seem dreary, but it's comforting to know that these feelings are a normal part of this process.
(page 6)
In one survey, most chronic pain patients said that their pain was "a normal part of their medical condition and something with which they must live." One-third of the patients said that their pain's severity was "sometimes so bad [they] want to die." Almost one-half said they would spend all they have on treatment if they could be assured it would banish their pain.
Again, it's nice to see numbers like one-third and one-half. Feels less lonely or like "exile." It's been a tough pill to swallow that, in my twenties, I cut down my hours at work and started letting someone else clean my house. This is my equivalent of throwing all my money at treatment-since less physical work means better quality life.
There was a lot of self-worth wrapped up in doing things for myself. That's something I have come to realize that I just need to do in order to feel better. What good is working all the time if I feel like half of a person when I'm struggling through the work-day and less of a person than that when I finally make it home in the evening. It is getting easier to accept this feat. It certainly helps that there is a notable difference in the way I feel.
I look forward to more posts from this book. I think she did a great job of blending enough personal information, like the above quotes, with scientific information- which will be coming soon.
Sunday, August 5, 2012
Avoiding Medication Errors At Your Local Retail Pharmacy
I want to share a story with you in the hopes that the same thing does not happen to you.
I used to take a medicine that is a mild pain reliever and it worked so well for me. With EDS, pain is a constant battle and anything that works is a blessing.
About a year and a half ago, I began having miserable side effects to my medicine. I had been taking it for 2 years prior to that without any complaint even of expected and common adverse effects associated with it. One day I took my usual 2 or 3 pills (well within the normal dosing limits) and my sinuses closed and I became extremely drowsy. It was on the same day as a dear friend's wedding and happened to be when my boyfriend had family staying with us for the wedding. I was so miserable that day. I recall driving and thinking that something had gone awfully wrong because I could not keep my eyelids open. I feared the fatigue associated with EDS and my demanding work schedule, combined with stress had gotten the best of me. I took my medicine again the next day and the same thing happened. I didn't yet associate anything with the medication, thinking only that I had overextended myself. It may sound odd that I made no connection at that point, but I did take it because I was having pain and I thought perhaps my own pain and fatigue were just worsening. I can remember thinking how awfully I felt and looked and that I hated that other people saw me in that situation.
I did, after a few doses, make the connection to the medication. Since it is possible that the medication can cause dizziness and drowsiness, I decided it must just be from the med even though I had not had these symptoms before.
Recently, a year after discontinuing the medication, I cleaned out the medicine cabinet as part of my pre-move house cleaning. I came across my medicine and thought, 'Why do I still have this? There's no way I can take this anymore.' Since it used to work so well, prior to any of this, I decided to look up the med by the markings to see if there had been any issues reported with that particular med and manufacturer.
The medication turned out to be a completely different med- TRAZODONE. -Which is definitely not what was prescribed to me. Trazodone is an anti-depressant that is sometimes used as a sleep aide. One can imagine the consequences that could have occurred from taking a few of them and getting behind the wheel of a car.
How does this kind of mistake happen?
Well, pharmacies do make mistakes. They do have a rate of error that is to be expected. With baby-boomers getting older and taking more medications, the retail pharmacy industry is growing. If there is an expected and unavoidable rate of medication errors that will occur, errors will happen to same part of the population. The key is to catch the errors before any adverse events happen.
How do we as consumers avoid medication errors happening to us?
I used to take a medicine that is a mild pain reliever and it worked so well for me. With EDS, pain is a constant battle and anything that works is a blessing.
About a year and a half ago, I began having miserable side effects to my medicine. I had been taking it for 2 years prior to that without any complaint even of expected and common adverse effects associated with it. One day I took my usual 2 or 3 pills (well within the normal dosing limits) and my sinuses closed and I became extremely drowsy. It was on the same day as a dear friend's wedding and happened to be when my boyfriend had family staying with us for the wedding. I was so miserable that day. I recall driving and thinking that something had gone awfully wrong because I could not keep my eyelids open. I feared the fatigue associated with EDS and my demanding work schedule, combined with stress had gotten the best of me. I took my medicine again the next day and the same thing happened. I didn't yet associate anything with the medication, thinking only that I had overextended myself. It may sound odd that I made no connection at that point, but I did take it because I was having pain and I thought perhaps my own pain and fatigue were just worsening. I can remember thinking how awfully I felt and looked and that I hated that other people saw me in that situation.
I did, after a few doses, make the connection to the medication. Since it is possible that the medication can cause dizziness and drowsiness, I decided it must just be from the med even though I had not had these symptoms before.
Recently, a year after discontinuing the medication, I cleaned out the medicine cabinet as part of my pre-move house cleaning. I came across my medicine and thought, 'Why do I still have this? There's no way I can take this anymore.' Since it used to work so well, prior to any of this, I decided to look up the med by the markings to see if there had been any issues reported with that particular med and manufacturer.
The medication turned out to be a completely different med- TRAZODONE. -Which is definitely not what was prescribed to me. Trazodone is an anti-depressant that is sometimes used as a sleep aide. One can imagine the consequences that could have occurred from taking a few of them and getting behind the wheel of a car.
How does this kind of mistake happen?
Well, pharmacies do make mistakes. They do have a rate of error that is to be expected. With baby-boomers getting older and taking more medications, the retail pharmacy industry is growing. If there is an expected and unavoidable rate of medication errors that will occur, errors will happen to same part of the population. The key is to catch the errors before any adverse events happen.
How do we as consumers avoid medication errors happening to us?
- If your prescription is new for you, open the bottle at the pharmacy and have the pharmacist check it before you leave. If you have had it filled before, check it against the old bottle for the dose and instructions and check the pills against each other to make sure they have the same markings and appearance. Some pharmacies will put a written notification on the bottle or the materials given to you to notify you when the markings or appearance have changed, but not all of them do.
- If you can wait, fill your prescription after the first week of the month. Why? Social security checks go out on the first of the month. Many people have to wait for these checks to come in to fill their prescriptions. With the surge of business, errors increase during this time.
- Don't be in a rush at the pharmacy. Checking the pills will ensure against human error and errors that may occur outside of the pharmacy like the Opana pills that were found in bottles of Excedrin.
In my case, the name and appearance of the pills were similar. The only way to tell was, of course, the crazy side effects and the markings.
I have since been able to get back on the right medication and gain some pain relief. Things are getting back on track, but I did suffer unnecessary setback for the year that I went off of it.
It is essential to understand that the medical field itself and the people who carry out services to us are fallible. Often times we would like to place blame when the focus ought to be on how to avoid and anticipate mistakes that most certainly will occur.
Thursday, May 31, 2012
Awareness Month
It's May 31st and another awareness month has come to an end.
I know my blog has been MIA for a while, but I hope that with the start of my blog, my friends and family have learned something new about EDS.
Mostly this is just a cathartic way of sharing my story and organizing my thoughts on EDS, but I am always here to answer questions/ interests about EDS.
Hopefully when things settle down after moving and switching jobs I will have more to share. For now, the conversion of paper charting to EMR at my current job has me pretty swamped and exhausted from head to toe.
I know my blog has been MIA for a while, but I hope that with the start of my blog, my friends and family have learned something new about EDS.
Mostly this is just a cathartic way of sharing my story and organizing my thoughts on EDS, but I am always here to answer questions/ interests about EDS.
Hopefully when things settle down after moving and switching jobs I will have more to share. For now, the conversion of paper charting to EMR at my current job has me pretty swamped and exhausted from head to toe.
Tuesday, April 17, 2012
PT continued...
Still working on PT. Yesterday I had the PT assistant working with me. I have a cold or something and I really didn't feel like explaining EDS to her. I also think that's the PT's job. I scared her when I was doing an exercise with my back against the wall. I didn't like the way my shoulder was articulating, so I pressed my shoulder blade against the wall until I felt my scapula snap, pretty hard, back into place. She said, "Did you just pop your shoulder back in place?" She seemed really startled and said she had never seen that before. Oops. Maybe I should have warned her. I forget that other people can be squeamish about that stuff.
Thursday, April 12, 2012
Crushed Another Run
Well, crushed my second attempt at a run this year. It's a good start. I actually found my second wind this time. You know, that moment in your run that you stop feeling like it's too hard and you think you could keep going for a while. I still stopped at 1.55 miles though. My asthma was kicking me in the chest the whole time. I can't wait for it to get hot outside, so that isn't such an issue. Fingers crossed for no dislocated ribs this time.
I used to get at least 3-4 good distance runs in every week. Once I quit doing it consistently (during recovery from shoulder surgeries), I started with the dislocated ribs after runs. Hopefully if I can learn to be patient with myself and stick to the slow runs, I can build up to a good 5 mile run. What a release those long runs used to be. I'd love to have that end-of-the-run feeling again.
I used to get at least 3-4 good distance runs in every week. Once I quit doing it consistently (during recovery from shoulder surgeries), I started with the dislocated ribs after runs. Hopefully if I can learn to be patient with myself and stick to the slow runs, I can build up to a good 5 mile run. What a release those long runs used to be. I'd love to have that end-of-the-run feeling again.
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