This morning I realized something. Thursdays are my favorite day. Why? Because I have my knitting group.
I really like my knitting group. When we moved a year and a half ago, I wanted to continue to do something cancer support related. Not necessarily something to provide me with support for my cancer crap. But more for something to connect me to the cancer community and other cancer people.
We didn't really move that far. Probably only 10 miles as the crow flies. But in little New England towns, that can be far, far away. The town where we lived is much larger geographically than our old town but has fewer people. To get to where we used to live, we have to go to three other towns. So culturally it's another place. My father tells me we no longer have Boston weather but New Hampshire weather.
Anyway, I had to find a new place to connect to the cancer community so I approached a cancer support center closer to our new house now than before we moved. We agreed I would start a knitting group in the spring.
It's been doing pretty well, with ups and downs in terms of members. We have a core group that comes regularly. We are fairly flexible in terms of who we like to join us. The main requirement do some sort of craft that can be brought to the group - we have cross stitchers as well as knitters and crocheters and have a beader coming to join us. And probably our best knitter is a gentleman who knits items for his children and grandchildren.
The only other requirement is that everyone has to have had cancer. We initially were pretty open on who could join us. But after a few uncomfortable sessions with people who just didn't 'get it', we decided that we really only wanted to have people who 'got it' because they had had cancer too.
As a result we have a group which communicates on many levels about cancer. Our topics can be wide ranging. But its always a wonderful conversation. It seems we have connected in different ways and our crafts help bridge our differences. Some participants have said its better than their other support groups.
I look forward to every Thursday afternoon where for two hours I connect with people who understand my life in a different way than many other people.
Showing posts with label support group. Show all posts
Showing posts with label support group. Show all posts
Thursday, July 13, 2017
Friday, June 9, 2017
Finding Support Resources
In my personal experience the most important thing to do after a 'yucky' diagnosis (after going to the doctor and taking your meds) is to find support resources. I keep saying that the emotional part of you is just as important of the physical side of you and this is yet another example.
First I would ask your doctor for information and then look at the source of the information they give you. For example, at my breast cancer diagnosis I was given a folder of information with resources - including a flyer from the American Cancer Society, and one from a local support organization. Two good places to start. But I was also told about Breastcancer.org which was another great resource.
Second, I would skip Dr Google but would look for information for patients for that ailment. For example, going back to my Rheumatoid Arthritis I found rheumatology.org which is primarily for doctors but also for patients and I found arthritis.org which is more for patients. both provided me good information.
Third, I went back to that other flyer I got from a local support organization at my breast cancer diagnosis. They had support groups! One full of people like me grappling with their cancer diagnosis. What a great place for me to go.
Finally, I found komen.org which had online support groups.... The last piece I needed.
So when you are faced with that yucky diagnosis, work on finding support. Trust me its out there. You just need to find it.
Recently I was told about two young people around 20 who were facing fairly awful cancer diagnoses. They needed help. I quickly recommended a couple of resources for them - primarily Stupidcancer.org. (I love their tag line - we make cancer suck less. If you are offended by that language you are probably too old for them. They primarily work with people from age 15 to 35 or 40.)
It never ceases to amaze me that people with cancer, or something else yucky, try to struggle blindly without any emotional support. Trust me at my second cancer diagnosis, I quickly jumped on the support bandwagon and joined support groups and had a therapist. By the time I was diagnosed with RA and fibromyalgia I already was connected to many support resources.
Trust me your emotions are important....
First I would ask your doctor for information and then look at the source of the information they give you. For example, at my breast cancer diagnosis I was given a folder of information with resources - including a flyer from the American Cancer Society, and one from a local support organization. Two good places to start. But I was also told about Breastcancer.org which was another great resource.
Second, I would skip Dr Google but would look for information for patients for that ailment. For example, going back to my Rheumatoid Arthritis I found rheumatology.org which is primarily for doctors but also for patients and I found arthritis.org which is more for patients. both provided me good information.
Third, I went back to that other flyer I got from a local support organization at my breast cancer diagnosis. They had support groups! One full of people like me grappling with their cancer diagnosis. What a great place for me to go.
Finally, I found komen.org which had online support groups.... The last piece I needed.
So when you are faced with that yucky diagnosis, work on finding support. Trust me its out there. You just need to find it.
Recently I was told about two young people around 20 who were facing fairly awful cancer diagnoses. They needed help. I quickly recommended a couple of resources for them - primarily Stupidcancer.org. (I love their tag line - we make cancer suck less. If you are offended by that language you are probably too old for them. They primarily work with people from age 15 to 35 or 40.)
It never ceases to amaze me that people with cancer, or something else yucky, try to struggle blindly without any emotional support. Trust me at my second cancer diagnosis, I quickly jumped on the support bandwagon and joined support groups and had a therapist. By the time I was diagnosed with RA and fibromyalgia I already was connected to many support resources.
Trust me your emotions are important....
Friday, January 6, 2017
Finding People Like You
What is the point of a support group? Finding people like you to talk about your issues - whether its widows, cancer people, parents of autistic children. Sometimes it helps to talk to people with similar issues - everyone has cancer for example. But sometimes you need to find people with the same cancer as you.Its pretty easy to find women with breast cancer because there are support groups for them everywhere. Its other types of cancer that can be hard to find.
But then there comes the question: How do you find people like you? There aren't little registries for people with a specific kind of cancer to sign up. So how do you find them? Asking other people who you meet.
I don't mean go up to strangers and ask them if they have a type of cancer. I do mean ask your oncologist about support activities such as support groups where you might meet other people with your type of cancer. Another place you might look for similar people are on social media - just like
networking for a job.
It is so important to find people who are coping with the same issue as you. They are the only one who really understand your questions, who have been faced with the same issues have you,
As I strongly believe that your emotional side is as important as the physical side, finding support is crucial.
But then there comes the question: How do you find people like you? There aren't little registries for people with a specific kind of cancer to sign up. So how do you find them? Asking other people who you meet.
I don't mean go up to strangers and ask them if they have a type of cancer. I do mean ask your oncologist about support activities such as support groups where you might meet other people with your type of cancer. Another place you might look for similar people are on social media - just like
networking for a job.
It is so important to find people who are coping with the same issue as you. They are the only one who really understand your questions, who have been faced with the same issues have you,
As I strongly believe that your emotional side is as important as the physical side, finding support is crucial.
Monday, December 19, 2016
Peer Support
When first diagnosed with breast cancer, I started going to support groups. And I was very appreciative of what I learned from the other women in them. I also found support in online communities which helped me even more. You go to your support group weekly but the online groups were available 24/7.
I can't tell you how much I learned at my support groups that helped me understand my treatment protocol, what to ask my doctor, and more. The peer support was very different from what I learned from my doctor. In some ways it was less invasive but more personal than my oncologist and his team.
Now a hospital is using a peer support group to help promote communication across different groups and to help reduce differences in rates of screening and survival, particularly in Latina/Hispanic women as this hospital is in New Mexico.
I think this is one of those 'doh' moments that someone should have thought of sooner. There are many other peer support networks out there. But to have one at a hospital to help improve the physical and emotional health of those with breast cancer, is amazing.
I hope many other hospitals try this type of activity for those with breast cancer or other ailments where there are disparities.
I can't tell you how much I learned at my support groups that helped me understand my treatment protocol, what to ask my doctor, and more. The peer support was very different from what I learned from my doctor. In some ways it was less invasive but more personal than my oncologist and his team.
Now a hospital is using a peer support group to help promote communication across different groups and to help reduce differences in rates of screening and survival, particularly in Latina/Hispanic women as this hospital is in New Mexico.
I think this is one of those 'doh' moments that someone should have thought of sooner. There are many other peer support networks out there. But to have one at a hospital to help improve the physical and emotional health of those with breast cancer, is amazing.
I hope many other hospitals try this type of activity for those with breast cancer or other ailments where there are disparities.
Monday, December 12, 2016
Another Anniversary
I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.
We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).
Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.
Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.
It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.
I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.
Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...
In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.
This is an anniversary to celebrate - when I first learned about online patient support.
We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).
Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.
Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.
It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.
I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.
Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...
In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.
This is an anniversary to celebrate - when I first learned about online patient support.
Sunday, January 10, 2016
The Big Gap in Treatment for All
Someone said something the other day that hit a nerve for me. 'How well do you think the emotional needs of patients are met?' And I started thinking.
When I was diagnosed with thyroid cancer, my emotional needs were not mentioned. At all. When I first destroyed my knee skiing, no mention was made of the changes I faced in my life. That was when I first needed to give up some of my favorite sports - skiing was never the same again. When I had hysterectomy, I was given the advice by friends to go to hystersisters.com to answer a lot of emotional questions and the long term impact of the surgery. I do not think my doctor gave me any advice. I mean I may have been given a pamphlet but that was it.
When I was diagnosed with breast cancer, I was definitely given a folder of information on resources - support groups, lymphedema, hair loss, Look Good, Feel Better programs. But I was the one who said I am going to a support group, asked for a therapist, and all that. My emotional needs were sometimes asked about but I felt I was the one raising the issue of how I was coping.
When I was diagnosed with fibromyalgia and rheumatoid arthritis, my emotional needs were not mentioned. these diagnoses are not minor, they are pretty much life changing. And doctors didn't think my emotions were an issue.
No matter what the doctor tells you, how often do they stop and ask you how you are doing emotionally? Somethings are minor - you get the flu, sprain your wrist, etc - you will heal and go back to normal. But after a diagnosis of RA, MS, fibromyalgia, heart attack, stroke, or anything else with a significant long term impact on your health that will change you forever, shouldn't the doctor and the rest of your medical team consider your emotional health as much as your physical health?
When I was diagnosed with thyroid cancer, my emotional needs were not mentioned. At all. When I first destroyed my knee skiing, no mention was made of the changes I faced in my life. That was when I first needed to give up some of my favorite sports - skiing was never the same again. When I had hysterectomy, I was given the advice by friends to go to hystersisters.com to answer a lot of emotional questions and the long term impact of the surgery. I do not think my doctor gave me any advice. I mean I may have been given a pamphlet but that was it.
When I was diagnosed with breast cancer, I was definitely given a folder of information on resources - support groups, lymphedema, hair loss, Look Good, Feel Better programs. But I was the one who said I am going to a support group, asked for a therapist, and all that. My emotional needs were sometimes asked about but I felt I was the one raising the issue of how I was coping.
When I was diagnosed with fibromyalgia and rheumatoid arthritis, my emotional needs were not mentioned. these diagnoses are not minor, they are pretty much life changing. And doctors didn't think my emotions were an issue.
No matter what the doctor tells you, how often do they stop and ask you how you are doing emotionally? Somethings are minor - you get the flu, sprain your wrist, etc - you will heal and go back to normal. But after a diagnosis of RA, MS, fibromyalgia, heart attack, stroke, or anything else with a significant long term impact on your health that will change you forever, shouldn't the doctor and the rest of your medical team consider your emotional health as much as your physical health?
Thursday, December 10, 2015
Support Group Please!
I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.
I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.
I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.
Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.
I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.
There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.
And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.
Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.
I'll keep trying. But I need to get through moving first.
I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.
I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.
Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.
I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.
There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.
And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.
Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.
I'll keep trying. But I need to get through moving first.
Monday, November 23, 2015
The blind leading the sighted
I get so disappointed when I find cancer support activities lead by those who have never been diagnosed with cancer. Its a huge disappointment.
I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.
They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.
This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.
In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?
In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.
How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?
I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.
They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.
This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.
In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?
In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.
How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?
Sunday, May 10, 2015
Which support group?
I am a huge fan of support groups. With my first cancer diagnosis (thyroid) in 1981, cancer support groups were for old people, not for college students. (And back then cancer was whispered, not shouted.) With my second cancer diagnosis (breast), I immediately joined a support group (because I was not going to let cancer suck more years of my life). I actually attended two different breast cancer support groups over several years. They were great for me and provided a lot of emotional support group.
I also tried attending a chronic pain support group a few years ago. It was okay, but not very convenient for me and I didn't instantly connect with anyone. It was a big group as well with a range of ailments and ages.
Now I have a new therapist and she suggested I join their new fibromyalgia support group. I am a bit iffy on that. I think my hesitance comes from the fact that my health issues are not as focused on fibromyalgia or any single ailment.
As my blog has changed over recent year, my health has changed as well. I do not have a single focus for my health now. I have multiple ailments with multiple concerns.
I don't only focus on my annual mammogram and follow up with my oncologist any more. I focus on my annual mammogram and follow up with my oncologist and my rheumatologist appointments and my pain management appointments and my endocrinologist appointments and all my related tests and scans.
I need a support group for people with breast and thyroid cancer and fibromylagia and rheumatoid arthritis and bad backs and lymphedema and chronic pain and fatigue. I don't think there are any of those. This is why I have a therapist so I have a personal support group. I think that's the best I can do.
I also tried attending a chronic pain support group a few years ago. It was okay, but not very convenient for me and I didn't instantly connect with anyone. It was a big group as well with a range of ailments and ages.
Now I have a new therapist and she suggested I join their new fibromyalgia support group. I am a bit iffy on that. I think my hesitance comes from the fact that my health issues are not as focused on fibromyalgia or any single ailment.
As my blog has changed over recent year, my health has changed as well. I do not have a single focus for my health now. I have multiple ailments with multiple concerns.
I don't only focus on my annual mammogram and follow up with my oncologist any more. I focus on my annual mammogram and follow up with my oncologist and my rheumatologist appointments and my pain management appointments and my endocrinologist appointments and all my related tests and scans.
I need a support group for people with breast and thyroid cancer and fibromylagia and rheumatoid arthritis and bad backs and lymphedema and chronic pain and fatigue. I don't think there are any of those. This is why I have a therapist so I have a personal support group. I think that's the best I can do.
Monday, March 16, 2015
Would you expect to get good medical advice in a tweet?
I read this article, The Doctor Will Tweet You Now, on Curetoday.com and am not sure how I feel about it. I think its great that there are doctors on Twitter and other social media and sharing their knowledge and helping others. However, they cannot provide medical advice for you as the article states.
The focus of the article is that Dr. Attai, and two other doctors, who run an online support group on twitter #BSCM on Monday nights.Well that's great. How would it help me? Provide information on what I should ask my doctor and answer general treatment questions. I have been in support groups where a doctor's input would be appreciated from time to time.
However I would never expect to be diagnosed and treated by a doctor through a tweet. Even if I tweeted a video link to show what I was talking about, I would not accept their comments as more than advice on what to ask my doctor.
So why do they think its so great that they tweet etc? I'm just not sure. I am having a real problem with this and doubt I would ever use it.
The focus of the article is that Dr. Attai, and two other doctors, who run an online support group on twitter #BSCM on Monday nights.Well that's great. How would it help me? Provide information on what I should ask my doctor and answer general treatment questions. I have been in support groups where a doctor's input would be appreciated from time to time.
However I would never expect to be diagnosed and treated by a doctor through a tweet. Even if I tweeted a video link to show what I was talking about, I would not accept their comments as more than advice on what to ask my doctor.
So why do they think its so great that they tweet etc? I'm just not sure. I am having a real problem with this and doubt I would ever use it.
Tuesday, January 27, 2015
Emotional Support when Facing A Cancer or Other Nasty Diagnosis
Repeat after me:
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
And again.
You could have a rare disease, such as being one of only 8 people world wide with the same diagnosis. But I bet there are other people with a similar disease from a non-medical type of view. You are not the only person with a cancer or a genetic disease or whatever you have. Unfortunately there are other people out there who are dealing with their medical diagnosis.
At my second cancer diagnosis, I didn't sit back. I took action. Within 24 hours of my diagnosis, I started my blog to keep people posted on my health. Before my first surgery, I joined a support group. Somewhere in there I started tweeting and joining several online communities for additional support. At the end of active treatment, when many people fall apart because your medical team says 'see you in six months', I found a therapist. I was determined not to let cancer suck away years of my life again.
I cannot say enough about the benefits of support groups. When I joined, I was told that it was proven about the benefits of them. People who actively seek out emotional support do better with their treatment. They have been shown to handle treatment better and have improved outcomes. Check out all these articles referenced here to show studies demonstrating this.
If you are emotionally miserable with your medical issues, find support. These days it can be available in online communities but also in person. I recommend you make the effort to get to an in person group at least periodically and make new friends with those who are there. You will feel better.
I have numerous cancer friends. These are friends who I would not have met if I didn't have cancer. We help each other with the bumps in the road. You can do this too.
Yes every cancer diagnosis is different even if you basically have the same disease. But the medical roller coaster is pretty much the same for all.
Thursday, March 11, 2010
Fact: Stress Erases Brain Cells
Last night I met my former support group friends for dinner. Its amazing that two years later, we are still meeting for dinner or coffee almost monthly. We all met in a weekly support group program for newly diagnosed when we were all in chemo or about to start. Now we get together to keep each other up to date and talk about all our medical crap.
As I was driving there, I was thinking about the fact that I had five medical things to tell them about. I got there, we got seated and I started talking (and was informed I looked a little stressed). I told them about my ankle and probably surgery. I told them about my lymphedema. I told them about my ultrasound. Then I was asked what are the other two things... I told them about my SI joint injection this morning. And I can't remember what the fifth thing is that I told them about. Stress has erased brain cells. I came home and told my husband and he asked what the five things were and I couldn't remember. He laughed at me. I blame stress.
As I mentioned this morning I am having a steroid and synthetic cartilage injected into my right SI joint. I can't wait. The injection does hurt. The feeling of the steroid going in can be relatively painful. Last time after the injection, I had significant pain in the back of my right leg and ended up in a wheelchair on percocet. I am hoping for not a repeat of that situation and am relatively stressed. However I have a pill for that and will take half of one before I go. The good news is I should be home by 10 am at the latest. I will look for my brain when I return home.
As I was driving there, I was thinking about the fact that I had five medical things to tell them about. I got there, we got seated and I started talking (and was informed I looked a little stressed). I told them about my ankle and probably surgery. I told them about my lymphedema. I told them about my ultrasound. Then I was asked what are the other two things... I told them about my SI joint injection this morning. And I can't remember what the fifth thing is that I told them about. Stress has erased brain cells. I came home and told my husband and he asked what the five things were and I couldn't remember. He laughed at me. I blame stress.
As I mentioned this morning I am having a steroid and synthetic cartilage injected into my right SI joint. I can't wait. The injection does hurt. The feeling of the steroid going in can be relatively painful. Last time after the injection, I had significant pain in the back of my right leg and ended up in a wheelchair on percocet. I am hoping for not a repeat of that situation and am relatively stressed. However I have a pill for that and will take half of one before I go. The good news is I should be home by 10 am at the latest. I will look for my brain when I return home.
Wednesday, March 11, 2009
Anterior uveitis
No, I don't have it, the cat does. It is a relatively common type of cat eye ailment but eye issues are fairly rare for cats. Well, at least we think it is just that. There could be a tumor in his eye which would be a different story. Apparently eye tumors for cats are not that uncommon but are usually contained in the eye. If it was a tumor behind the eye, that's a far different story.
The guess is anterior uveitis and the only way to confirm it is to pack kitty into his carrier and take him to a cat ophthalmologist. He doesn't travel well and would not do well with any transport. So plan A is the shot the vet gave him yesterday followed up with eye drops three times a day. I have to call the vet on Friday morning to see if it looks better. If not, then we go to plan B which may include kitty transportation. I am not sure I can carry him and his box with my back the way it is these days. We will wait and see but at least its not my ailment.
However, I am the one with the three times a day wrestling session to get drops in his eye. He doesn't like them and has already communicated that to me. He is very laid back until he decides he doesn't like something - cat carrier, car rides, pills, eye drops, shots, etc - and then he is very difficult to deal with.
In addition to having the vet here to take care of kitty, yesterday I worked from home, went to PT, met a friend for a walk and went to my support group. Yesterday's PT was not as successful as the previous one. There was no reduction in pain levels. I had some relief after last Thursday's session but the pain has been slightly increasing. Yesterday did not ease up the increase and the discomfort is growing. The therapist tried an ultrasound modality and then an electronic stimulation. She tried the ultrasound last Thursday and I felt better after but yesterday she added the electronic stimulation and said that if it helped, they could see about getting me a machine for home that I could use in the middle of the night if I had significant pain. However, not every one feels relief with the electronic stimulation and I was one of them... Three weeks into PT I would have hoped for more relief. This is disappointing to say the least. But I will go back on Friday and then weekly for three more weeks.
My walk with my friend was very nice - we walked in a place neither of us had ever been to (cemetery along the river) and we hadn't talked in quite a while. Then I went to my support group and for some reason walked out of there feeling more depressed than going in. A support group is a place to discuss our pain points and issues but sometimes it rubs a little too hard and is emotionally upsetting.
Today I will try not to have such high expectations (but it was a full moon yesterday so perhaps that is why). I have to work this morning and want to go for a walk when the rain stops. Then I am going to work and to a meeting and won't be home until about 830 tonight so a long day for me.
The guess is anterior uveitis and the only way to confirm it is to pack kitty into his carrier and take him to a cat ophthalmologist. He doesn't travel well and would not do well with any transport. So plan A is the shot the vet gave him yesterday followed up with eye drops three times a day. I have to call the vet on Friday morning to see if it looks better. If not, then we go to plan B which may include kitty transportation. I am not sure I can carry him and his box with my back the way it is these days. We will wait and see but at least its not my ailment.
However, I am the one with the three times a day wrestling session to get drops in his eye. He doesn't like them and has already communicated that to me. He is very laid back until he decides he doesn't like something - cat carrier, car rides, pills, eye drops, shots, etc - and then he is very difficult to deal with.
In addition to having the vet here to take care of kitty, yesterday I worked from home, went to PT, met a friend for a walk and went to my support group. Yesterday's PT was not as successful as the previous one. There was no reduction in pain levels. I had some relief after last Thursday's session but the pain has been slightly increasing. Yesterday did not ease up the increase and the discomfort is growing. The therapist tried an ultrasound modality and then an electronic stimulation. She tried the ultrasound last Thursday and I felt better after but yesterday she added the electronic stimulation and said that if it helped, they could see about getting me a machine for home that I could use in the middle of the night if I had significant pain. However, not every one feels relief with the electronic stimulation and I was one of them... Three weeks into PT I would have hoped for more relief. This is disappointing to say the least. But I will go back on Friday and then weekly for three more weeks.
My walk with my friend was very nice - we walked in a place neither of us had ever been to (cemetery along the river) and we hadn't talked in quite a while. Then I went to my support group and for some reason walked out of there feeling more depressed than going in. A support group is a place to discuss our pain points and issues but sometimes it rubs a little too hard and is emotionally upsetting.
Today I will try not to have such high expectations (but it was a full moon yesterday so perhaps that is why). I have to work this morning and want to go for a walk when the rain stops. Then I am going to work and to a meeting and won't be home until about 830 tonight so a long day for me.
Tuesday, August 26, 2008
I survived bureaucracy and other miscellany
Yesterday was a big day. I survived dealing with many bureaucracies. First I dealt with our favorite, the registry of motor vehicles. I had to find out about selling our old car - did we need to have the actual title or not. Of course they don't put this piece of information on line - as that would be HELPFUL. I got to call and be on hold for 10 minutes. After 10 minutes a car salesman beeped in and I was able to renegotiate the price of our new car. But the registry cut me off of hold during that call so I had to call back and wait and additional 20 minutes to speak to someone for 10 seconds to find out what I needed.Then I dealt with the car dealer and got to fill in lots of paperwork. (I do admit to a tiny bit of chemo brain as I drove right by the dealer, even though I was there on Sunday...) Nothing like a heart stopping moment when they say 'your deposit check won't go through!' Yikes, I gave him my debit card instead and called the back at the same time. My first thought w
as that someone compromised our account and we have no money left. But the money is there. That got my pulse going. Stupid little check checking machine.Then I picked up a friend's son at the airport to get him checked in for college (and his mother thought he was lost and wasn't answering his phone but the battery was dead...) Then we got him checked into his 'lovely' cinder block dorm room. (I also admit to going the 'long way' home as the stupid ramp I wanted was closed due to road construction but I beat rush hour traffic which is the most important thing.)
I also managed to write up a bill of sale so we could sell Walter's old car, find the title to the car, and arrange for someone to come buy it.
(Did you notice I managed to fit in taking more
pictures of my garden to bore you all?)All in one day. I do feel accomplished. I also got some work done. But I didn't get all the work done I needed. Today I have to get caught up. but I also need to go for my morning walk, take my car for an oil change, and get to my support group. How am I suppsed to have time to play on line if I have to work too??? Grr...
Wednesday, August 6, 2008
I'm still pondering
Twice recently I have been asked in group situations, what is the best thing to come out of my cancer diagnosis. The only thing anyone in the two groups could come up with is being more on top of one's medical issues. I mean the rest of it - an unwanted hair cut, nausea from chemo, surgery, other side effects, medications, and stress - who wants any of it. (No I really didn't want to go bald.)
What I find interesting is both times this question was asked by a professional therapist type person to a bunch of breast cancer people. I think all of us are still waiting for something good to come out of it. Maybe they were trying to get us to see the positive in this. Well, maybe some one has seen something positive. But not me.
Another pondering, was it really bad of me to eat garlic bread and garlic hummus the day before a dentist appointment???
Yesterday I did go to my support group for the first time in over a month. I also worked and did lots of work from home. Today I am going to go for a walk, the dentist (and yes I flossed), work, run errands, and work from home. I think that's plenty for one day.
What I find interesting is both times this question was asked by a professional therapist type person to a bunch of breast cancer people. I think all of us are still waiting for something good to come out of it. Maybe they were trying to get us to see the positive in this. Well, maybe some one has seen something positive. But not me.
Another pondering, was it really bad of me to eat garlic bread and garlic hummus the day before a dentist appointment???
Yesterday I did go to my support group for the first time in over a month. I also worked and did lots of work from home. Today I am going to go for a walk, the dentist (and yes I flossed), work, run errands, and work from home. I think that's plenty for one day.
Thursday, June 21, 2007
Positive Things
Today I called the social worker at Lahey about their Breast Cancer Support Group. Evidently there is an introductory group for newly diagnosed patients but it won't be starting up again for a while. She referred me to two other places - one in Arlington and one in Newton. The center in Arlington suggested Reiki for stress reduction. I have an appointment for next week and will give it a try. They also have a support group but that doesn't meet again until after July 4th.
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