Join us in signing this petition to make June "Cancer Survivors Month:"
http://www.thepetitionsite.com/takeaction/466/852/215/
They say that every day you live with cancer, you're a survivor! If cancer has touched your life, though, you know that a cure would change the term "survivor" radically. So, let's make June the month to raise awareness for all kinds of cancer to help find a cure, and celebrate those who are surviving cancer with strength and grace.
Have a great weekend!
Chelsea
Saturday, June 25, 2011
Thursday, June 9, 2011
An Angel Named Annabell
Yesterday, Mom went back for the second time to get x-rays done, and the machine was broken - again. So, she waited and waited for the machine to be fixed, and waited some more. At the point she thought she couldn't sit any longer, she stood up to wait. After standing up, a sweet, little employee of the Quality Care department came over and asked if she could ask Mom some questions. Mom's reply was, "Oh, honey, I don't think you'll like my answers." Annabell started asking about her waiting experiences at the hospital, which are normally not that bad, considering the number of patients. She asked about her other experiences, and Mom began to tell her about the terrible situations with her OB oncologist and primary care doc. She explained about the letter she wrote and mailed to the hospital's main office, and that she's never received a reply. She explained that she's in limbo, waiting for the doctors to do something for her. Annabell took notes, was kind, and very concerned.
She couldn't have shown up at a better time, when Mom feels like there's no fight left in her, and I'm feeling like I've had to write one too many letters. Hopefully, Annabell will be able to help us see some resolution, and help Mom get well!
Wishing you wellness,
Chelsea
She couldn't have shown up at a better time, when Mom feels like there's no fight left in her, and I'm feeling like I've had to write one too many letters. Hopefully, Annabell will be able to help us see some resolution, and help Mom get well!
Wishing you wellness,
Chelsea
Sunday, June 5, 2011
At A Loss ...
I have never seen such a lack of empathy as I have in the past several months. It seems like doctor after doctor is pushing my mother away because her health problems are just too serious for them to deal with (or there are too many of them to remember.) Friday, I went with Mom to her primary care appointment with Dr. V, and it was bad from the beginning. The nurse was nice, joking with us and saying that she hoped Dr. V's attitude was better than it had been at her last appointment. (We mentioned something to a different nurse at the previous appointment, who tried to help us get answers from the doctor, so word evidently got around that we weren't happy with Dr. V's bedside manner.) Then, the doctor came in and was instantly on the defensive. Mom first asked for the results of the blood work the doctor insisted on last time (testing for some pretty serious stuff), and the doctor immediately dismissed her, saying that they only had a limited amount of time and wouldn't be able to talk about everything, so to just tell her what Mom considered important and they would address that.
It was obvious that someone had spoken to her about how she didn't address all of the things that my mom talked about in her last appointment, and it was obvious that she had no intention of owning up to her mistakes. It was also obvious that she no longer considered the bloodwork important enough to talk about first. She knows Mom's long list of health issues, and is aware that she's struggling with several of them right now. Everything Mom spoke to her about during the last appointment was important. We both just sat in silence for a second, not believing what we heard.
For the second time, Mom said that the severe shoulder pain she's been having since a fall a few weeks ago was important. She repeated that she had a previous injury, a torn rotator cuff, and that's what it feels like; the pain is sometimes so bad that it makes her feel like vomiting. She told her that she has to hold her elbow close to her side to be able to lift anything, and that she has been babying the shoulder as much as possible - not lifting anything heavy, etc. This is all info she gave Dr. V at her last appointment, which was never addressed.
So, after talking to Mom about her shoulder, she painfully tested her range of motion and ordered x rays, but only after asking if any x rays had been done on her shoulder recently. (This baffled us. X rays would have been done had the doctor addressed that during the last appointment, and Mom wouldn't be requesting them had they already been done.) Then she suggested that Mom stretch her shoulder to regain range of motion, keep her elbow close to her side, and that she shouldn't lift anything heavy. Somehow I don't think that will be a problem ...
She also said that someone ordered the wrong test as part of her lab work last time, and that she would have to make sure they did the right test this time. We believe this was a mistake on her part, because of what the lab paperwork states from the last visit. The correct tests should have been for the various types of Hepatitis, so Mom asked her to clarify which one (we couldn't remember the different causes for the different types of Hepatitis.) Dr. V's reply was blunt and didn't answer the question: "Hepatitis B is Hepatitis B. They ordered the wrong test." Mom asked again what the causes were, and she did answer the question, no less bluntly than her first answer.
After telling her that she had written the requests for x rays and new lab work, Dr. V stood up and started walking toward the door. She didn't ask if there was anything else Mom wanted to discuss, so I asked Mom if she wanted to ask some questions about the medication she had been prescribed last time (as well as some she asked the doctor about, but wasn't addressed) which made the doctor pause. Before she could even answer, though, Dr. V was walking out the door. Of course, Mom said she didn't want to talk to her about it, because, let's be honest, who would want to continue a conversation with a doctor that makes you feel completely uncared for? As the doctor walked out, Mom answered "No, I don't think so. She already made it clear that she doesn't have time for that, " as I agreed. Dr. V nodded and said "Yeah, the nurse will be right in," and closed the door.
I'm in the same healthcare system, and it's my understanding that after your first primary care visit, which is usually 45 minutes to 1 hour, the time frame decreases to about 30 minutes per visit. Dr. V spent between 10 and 15 minutes in the room before rushing out. There's no reason the appointment should have gone the way it did.
It so happens that this new medication the doctor switched her to (from a med that was working, but the doctor didn't approve of because it's highly addictive) makes her unsteady on her feet, sleepy, and makes her feel "drunk." The medication makes it impossible for her to drive, adds to the possibility of her falling, and makes it even harder for her to work productively to make some kind of living. In other words, the medication is making things worse, and she won't be able to see a specialist for another three months.
The same nurse we spoke to at the last appointment came in with Mom's paperwork, made it very clear that we were not the only ones having problems with Dr. V, and that even the staff was being treated the same way we had been treated. She suggested some different options Mom could try, assured Mom that it was her right to find a different doctor, and was very apologetic. We thanked her for all of her help and told her what a good nurse she is. She was obviously busy, but took the time to talk with us and attempted to help.
All in all, I'm at a loss, here. Should Mom just wait three more months to see a specialist she's needed to see since last November? Should she attempt to find another primary care doctor within the system now, who may or may not be able to prescibe her medication while she's waiting to see the specialist? Should she find a new primary care doctor, which could also take months, after her specialist appointment? It's so frustrating to start over completely with a new doctor, no matter how much better they are, when they aren't yet familiar with your extensive and complicated health history.
I know this is a long winded post, but I'm just at a loss for what to think, say, or do at this point.
Wishing you wellness,
Chelsea
It was obvious that someone had spoken to her about how she didn't address all of the things that my mom talked about in her last appointment, and it was obvious that she had no intention of owning up to her mistakes. It was also obvious that she no longer considered the bloodwork important enough to talk about first. She knows Mom's long list of health issues, and is aware that she's struggling with several of them right now. Everything Mom spoke to her about during the last appointment was important. We both just sat in silence for a second, not believing what we heard.
For the second time, Mom said that the severe shoulder pain she's been having since a fall a few weeks ago was important. She repeated that she had a previous injury, a torn rotator cuff, and that's what it feels like; the pain is sometimes so bad that it makes her feel like vomiting. She told her that she has to hold her elbow close to her side to be able to lift anything, and that she has been babying the shoulder as much as possible - not lifting anything heavy, etc. This is all info she gave Dr. V at her last appointment, which was never addressed.
So, after talking to Mom about her shoulder, she painfully tested her range of motion and ordered x rays, but only after asking if any x rays had been done on her shoulder recently. (This baffled us. X rays would have been done had the doctor addressed that during the last appointment, and Mom wouldn't be requesting them had they already been done.) Then she suggested that Mom stretch her shoulder to regain range of motion, keep her elbow close to her side, and that she shouldn't lift anything heavy. Somehow I don't think that will be a problem ...
She also said that someone ordered the wrong test as part of her lab work last time, and that she would have to make sure they did the right test this time. We believe this was a mistake on her part, because of what the lab paperwork states from the last visit. The correct tests should have been for the various types of Hepatitis, so Mom asked her to clarify which one (we couldn't remember the different causes for the different types of Hepatitis.) Dr. V's reply was blunt and didn't answer the question: "Hepatitis B is Hepatitis B. They ordered the wrong test." Mom asked again what the causes were, and she did answer the question, no less bluntly than her first answer.
After telling her that she had written the requests for x rays and new lab work, Dr. V stood up and started walking toward the door. She didn't ask if there was anything else Mom wanted to discuss, so I asked Mom if she wanted to ask some questions about the medication she had been prescribed last time (as well as some she asked the doctor about, but wasn't addressed) which made the doctor pause. Before she could even answer, though, Dr. V was walking out the door. Of course, Mom said she didn't want to talk to her about it, because, let's be honest, who would want to continue a conversation with a doctor that makes you feel completely uncared for? As the doctor walked out, Mom answered "No, I don't think so. She already made it clear that she doesn't have time for that, " as I agreed. Dr. V nodded and said "Yeah, the nurse will be right in," and closed the door.
I'm in the same healthcare system, and it's my understanding that after your first primary care visit, which is usually 45 minutes to 1 hour, the time frame decreases to about 30 minutes per visit. Dr. V spent between 10 and 15 minutes in the room before rushing out. There's no reason the appointment should have gone the way it did.
It so happens that this new medication the doctor switched her to (from a med that was working, but the doctor didn't approve of because it's highly addictive) makes her unsteady on her feet, sleepy, and makes her feel "drunk." The medication makes it impossible for her to drive, adds to the possibility of her falling, and makes it even harder for her to work productively to make some kind of living. In other words, the medication is making things worse, and she won't be able to see a specialist for another three months.
The same nurse we spoke to at the last appointment came in with Mom's paperwork, made it very clear that we were not the only ones having problems with Dr. V, and that even the staff was being treated the same way we had been treated. She suggested some different options Mom could try, assured Mom that it was her right to find a different doctor, and was very apologetic. We thanked her for all of her help and told her what a good nurse she is. She was obviously busy, but took the time to talk with us and attempted to help.
All in all, I'm at a loss, here. Should Mom just wait three more months to see a specialist she's needed to see since last November? Should she attempt to find another primary care doctor within the system now, who may or may not be able to prescibe her medication while she's waiting to see the specialist? Should she find a new primary care doctor, which could also take months, after her specialist appointment? It's so frustrating to start over completely with a new doctor, no matter how much better they are, when they aren't yet familiar with your extensive and complicated health history.
I know this is a long winded post, but I'm just at a loss for what to think, say, or do at this point.
Wishing you wellness,
Chelsea
Wednesday, June 1, 2011
How To React When A Loved One Is Diagnosed With A Serious Illness
I'm sure many of you have experience with this one. A friend or family member is diagnosed with chronic pain, diabetes, cancer, lupus, epilepsy or another chronic, potentially life threatening or fatal disease. How should you react?
The truth is, there's no right way. I mean, the wrong way would be to laugh in their face or never speak to them again. I know that mom and I have lost friends because of scary illnesses - friends just couldn't handle it, so they disappeared. If you're feeling like you can't deal with your loved one's diagnosis, be honest. Let them know that you're not sure what to do, but that you can simply be there for them. Maybe you haven't had to deal with something this severe before, and that's okay. Just be sure, however you react, that it's supportive. So, beyond that initial reaction, what can you do?
One of the first things you can do is either ask them about their diagnosis, or do some extracurricular research. Webmd.com is a good, realiable place to start if you're looking up a specific illness. You can also browse bookstores or your local library for information. This will show your loved one that you care enough to educate yourself on what they're going through, and will give you the peace of mind that comes with knowledge.
Another thing you can do is listen. Just listen. Don't try to compare what they're going through with what someone's cousin's dog went through, just listen and respond appropriately. Sometimes a "I can't even imagine what that's like," or "that must be so frustrating" is enough.
Lastly, you can get off the topic. Life goes on no matter how we're feeling, right? So, if possible, take your friend out for a quick shopping trip, bring lunch by and have a picnic in the living room, rent a movie - do something that doesn't involve his/her health problems. If your loved one isn't well enough to do something active, you can always read to them, do chores, or run errands for them and recount what you heard and saw when you get back.
Remember that people respond differently to bad news. Some handle it with tears, some with humor, some with a practical, straightforward attitude. You can take cues from your loved one to see what responses are appropriate to them. A great resource that I'm currently reading with my husband is the book The Five Love Languages by Gary Chapman. (Click the link to go to the official website, where you'll find quizzes and other info.) It's a book about discovering your husband or wife's "love language," or the way they express and receive love. Even though the book is designed for couples, the concept translates to family and friends easily. Find their love language, and you'll learn how to show them you care in the best way. Sometimes it's with gifts, like bringing what Mom and I call "happy day gifts" (gifts without special occasion,) or it might be with quality time, just sitting and talking about what's going on in life. Whatever your loved one's love language, you can assure they feel loved by you when you come to visit.
A side note - if you're having difficulty dealing with your loved one's diagnosis, or are just looking for advice or kinship, look for a local support group. Support groups aren't just for people with illnesses, they're also for the people the illness affects indirectly. So, while you're printing out a list of support groups your loved one could be a part of, find one that you can be a part of, too.
Wishing you wellness,
Chelsea
The truth is, there's no right way. I mean, the wrong way would be to laugh in their face or never speak to them again. I know that mom and I have lost friends because of scary illnesses - friends just couldn't handle it, so they disappeared. If you're feeling like you can't deal with your loved one's diagnosis, be honest. Let them know that you're not sure what to do, but that you can simply be there for them. Maybe you haven't had to deal with something this severe before, and that's okay. Just be sure, however you react, that it's supportive. So, beyond that initial reaction, what can you do?
One of the first things you can do is either ask them about their diagnosis, or do some extracurricular research. Webmd.com is a good, realiable place to start if you're looking up a specific illness. You can also browse bookstores or your local library for information. This will show your loved one that you care enough to educate yourself on what they're going through, and will give you the peace of mind that comes with knowledge.
Another thing you can do is listen. Just listen. Don't try to compare what they're going through with what someone's cousin's dog went through, just listen and respond appropriately. Sometimes a "I can't even imagine what that's like," or "that must be so frustrating" is enough.
Lastly, you can get off the topic. Life goes on no matter how we're feeling, right? So, if possible, take your friend out for a quick shopping trip, bring lunch by and have a picnic in the living room, rent a movie - do something that doesn't involve his/her health problems. If your loved one isn't well enough to do something active, you can always read to them, do chores, or run errands for them and recount what you heard and saw when you get back.
Remember that people respond differently to bad news. Some handle it with tears, some with humor, some with a practical, straightforward attitude. You can take cues from your loved one to see what responses are appropriate to them. A great resource that I'm currently reading with my husband is the book The Five Love Languages by Gary Chapman. (Click the link to go to the official website, where you'll find quizzes and other info.) It's a book about discovering your husband or wife's "love language," or the way they express and receive love. Even though the book is designed for couples, the concept translates to family and friends easily. Find their love language, and you'll learn how to show them you care in the best way. Sometimes it's with gifts, like bringing what Mom and I call "happy day gifts" (gifts without special occasion,) or it might be with quality time, just sitting and talking about what's going on in life. Whatever your loved one's love language, you can assure they feel loved by you when you come to visit.
A side note - if you're having difficulty dealing with your loved one's diagnosis, or are just looking for advice or kinship, look for a local support group. Support groups aren't just for people with illnesses, they're also for the people the illness affects indirectly. So, while you're printing out a list of support groups your loved one could be a part of, find one that you can be a part of, too.
Wishing you wellness,
Chelsea
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