I don't talk much about complications. Not because I don't have any or because I'm in denial about them. I know the complications I have today are a result of something that happened in the past and I can't go back and fix that. I do the best I can every day. I know if a new complication comes up, that my health care providers will help me through it.
When I was in college I was diagnosed early signs of kidney disease. I was put on a low dosage of blood pressure medicine which helped my kidneys. To date, my kidneys are doing well *knock on wood* and my blood pressure is in normal range; though I do still take the blood pressure medication.
My eyes. Growing up I went to the eye doctor once or twice a year. Things remained fine until I was 18, sort of. I was at the Joslin Diabetes Center DCTU (an in-patient program), and the eye doctor said I had papillitis and since I was 18 I could sign the forms and he could start dong laser immediately. I was by myself at this point in my stay. I was scared,. I cried but I did not let him bully me. He said something to the fact that he was the best, and I remember telling him there were good doctors in NYC as well. Instead I told him I needed to call my parents and we came to a quick decision not to proceed. We got a second opinion which lead to a third opinion, both of which said I did not have papillitis. It was at this time that I met my beloved Dr. Weiss.
Dr. Weiss and his colleague both said my eyes were fine They stayed fine for another 6 years or so. I was in graduate school when I had my first, second, third, fourth (you get the picture) hemorrhage. I cried at the diagnosis of retinopathy. Laser?!? Would I loose my vision?? Would the laser hurt?Would I have to leave school? What if the laser didn't work?
It was rough. The first appointment I had for laser, I was so anxious, so in my own head. Dr. Weiss got me ready - chin on the laser, lens on my eye, ready to go. And I passed out. Yes, before he started. We waited a few minutes, I felt better and he set it up again. And, the same thing happened. Passed out twice within 10 minutes, from anxiety. We eventually got through the first session of about 500 burns.
There were some weeks I was at the eye doctor 2x a week; for laser. Some hemorrhages were bad; some just seemed bad because they were in my center of vision. There were some days when we considered what the next step would be, but thankfully never got to that point The laser over time, did the trick. I believe I asked what ALL of the options were, as it made me feel better to know there were other things to try.
Despite this misery I did not drop of out graduate school. It was at this time I decided that I wouldn't not let diabetes win. There were some days I had laser in the late afternoon, put my sunglasses on took the subway back to school and attended evening classes (with my sunglasses still on). There was only one class I needed an extension on for a term paper I consider that a win.
Over the years I've had some bleeds, that typically resulted in a bit more laser. I was always surprised that he could fit more in, as my retinas look like Swiss cheese from all over the laser burns. I know that Dr. Weiss saved my vision That's the reason that I continued to seeing him even after I moved to Boston.
About six years or so ago I tired to find a local doctor and it was a very bad experience. She looked at my eyes and told me that if I didn't have an injection of Avastin that I'd lose my vision quickly. She didn't even have my medical records yet; nor did she offer a second opinion. More tears. To no surprise, I didn't let her touch my eyes but did call the office to request a copy of my medical record. It was at this time that she offered a second opinion or for me to come in and talk. She tired to evade the question for the medical record, and I told her I'd be at the office the next day to collect it. I knew legally she had to provide it upon my request. I did go back to Dr Weiss, and he did some more laser, and we were status quot for quite some time.
In the middle of last year I decided to try once again to find a local ophthalmologist. I ended up interviewing 2 doctors. Both said Dr. Weiss did impressive laser, and both confirmed he saved my vision. I think I have found a new doctor here in Boston, but it will take some time to adjust
So, there you have it. The good the bad, the ugly of my life with diabetes complications of the eye. And don't let a doctor ever try to bully you into doing something. If it doesn't seem right, or you have questions, don't proceed. You are in your right to ask questions, and get another opinion.
Friday, April 15, 2016
Sunday, January 17, 2016
Finding My Voice
I've had diabetes for a long time, and have never had an issue standing up for myself or others.
I have always wanted to do more. But how? What? What could *I* do to bring change? To make a difference?
Every year I raise as much money as I can for the Juvenile Diabetes Research Foundation. But every year I also say I want to do more. But how? What? What could *I* do to bring change? What more could I do to make a difference?
For quite some time I've been advocating for more programming for adults with T1D as there doesn't seem much available. Understandably there is a lot of support for newly diagnosed children and their families, but what happens when those kids grow up? They still have diabetes.
In the spring of 2015 things changed.
I applied to to be a MiniMed Ambassador through Medtronic Diabetes, and was accepted into the program! I wasn't exactly sure what it would involve other than talking to people about life on an insulin pump, which I was already doing. Around the same time (April/May) Camp Nejeda held it's first program for adults with T1D that I had a strong influence in building, working closely with the development staff. Then, in June Medtronic Diabetes held a contest to send a lucky winner to #masterlab (see Medtronic Diabetes Loop blog post) and I was selected to attend as their guest.
(feeling as though things are starting to fall into place)
#masterlab
I sat in the room with many influencers in the diabetes community, many that I didn't interact with previously , or to be honest hadn't interacted with at all. hearing their stories and what they've accomplished fueled my desire to do more. But how? Some of the folks in the room wrote fabulous blogs. Some were making great strides in advocacy, It was suggested that I should keep telling my story and eventually the right person will hear it.
Blogging:
At #masterlab, I had the opportunity to speak to Kelly Kunik about blogging, since I never really tried it. Her advice to me was to just write, to not write to gain an audience. That's when I created this blog, though I've realized this isn't my strong point. But I will keep at it - they say writing can be therapeutic. If someone happens to come along and gain something from it, an extra win.
Twitter:
Before #masterlab, I didn't use Twitter. To be honest, I didn't understand it. I created my account to contact some companies about customer support issues. I had no idea how to obtain followers, and was in awe again that people in the room had hundreds, some thousands. I learned how to live tweet, and also learned about Twitter chats. It took me a while to figure those out but I've come to look forward to #dcde and #dsma I've even made some local connections through it - who knew?
I want more!
The question remained though, of how to connect to other T1Ds locally, and routinely? Luckily, the MiniMed Ambassador folks were already thinking about that! Through them I was connected to the New England American Diabetes Association (ADA). Late October I had the good fortune connect with the New England ADA Mission Manager, Alison, by way of a volunteer conference. Alison and her colleagues presented the ADA mission, and at the end asked if anyone had questions. Since adults with T1D weren't mentioned, so I asked what they are doing for this demographic. My question was met with silence, and I thought perhaps I asked something bad, or opened a can of worms that should have remained shut. The silence was everyone thinking about it. It turns out, they weren't doing a lot, and many people chimed in with ideas, and suggestions. I'm happy to say that since that meeting I've been working with Alison on this and hope to launch some events in the coming months.
but wait, there's more!
For the last few months I have also been working with Camp Nejeda to help develop this year's Survive and Thrive Bootcamp 2016. We have a great panel of presenters lined up, and spots are starting to fill up!
Last but very not least, I found out a few weeks ago that I was named in the top 15 Ambassadors for 2015. It takes a lot to make me speechless, but that did it! The program connected me to the online (#doc) and local diabetes community in ways I never imagined, and I ran with it.
I think I found my voice.
I have always wanted to do more. But how? What? What could *I* do to bring change? To make a difference?
Every year I raise as much money as I can for the Juvenile Diabetes Research Foundation. But every year I also say I want to do more. But how? What? What could *I* do to bring change? What more could I do to make a difference?
For quite some time I've been advocating for more programming for adults with T1D as there doesn't seem much available. Understandably there is a lot of support for newly diagnosed children and their families, but what happens when those kids grow up? They still have diabetes.
In the spring of 2015 things changed.
I applied to to be a MiniMed Ambassador through Medtronic Diabetes, and was accepted into the program! I wasn't exactly sure what it would involve other than talking to people about life on an insulin pump, which I was already doing. Around the same time (April/May) Camp Nejeda held it's first program for adults with T1D that I had a strong influence in building, working closely with the development staff. Then, in June Medtronic Diabetes held a contest to send a lucky winner to #masterlab (see Medtronic Diabetes Loop blog post) and I was selected to attend as their guest.
(feeling as though things are starting to fall into place)
#masterlab
I sat in the room with many influencers in the diabetes community, many that I didn't interact with previously , or to be honest hadn't interacted with at all. hearing their stories and what they've accomplished fueled my desire to do more. But how? Some of the folks in the room wrote fabulous blogs. Some were making great strides in advocacy, It was suggested that I should keep telling my story and eventually the right person will hear it.
Blogging:
At #masterlab, I had the opportunity to speak to Kelly Kunik about blogging, since I never really tried it. Her advice to me was to just write, to not write to gain an audience. That's when I created this blog, though I've realized this isn't my strong point. But I will keep at it - they say writing can be therapeutic. If someone happens to come along and gain something from it, an extra win.
Twitter:
Before #masterlab, I didn't use Twitter. To be honest, I didn't understand it. I created my account to contact some companies about customer support issues. I had no idea how to obtain followers, and was in awe again that people in the room had hundreds, some thousands. I learned how to live tweet, and also learned about Twitter chats. It took me a while to figure those out but I've come to look forward to #dcde and #dsma I've even made some local connections through it - who knew?
I want more!
The question remained though, of how to connect to other T1Ds locally, and routinely? Luckily, the MiniMed Ambassador folks were already thinking about that! Through them I was connected to the New England American Diabetes Association (ADA). Late October I had the good fortune connect with the New England ADA Mission Manager, Alison, by way of a volunteer conference. Alison and her colleagues presented the ADA mission, and at the end asked if anyone had questions. Since adults with T1D weren't mentioned, so I asked what they are doing for this demographic. My question was met with silence, and I thought perhaps I asked something bad, or opened a can of worms that should have remained shut. The silence was everyone thinking about it. It turns out, they weren't doing a lot, and many people chimed in with ideas, and suggestions. I'm happy to say that since that meeting I've been working with Alison on this and hope to launch some events in the coming months.
but wait, there's more!
For the last few months I have also been working with Camp Nejeda to help develop this year's Survive and Thrive Bootcamp 2016. We have a great panel of presenters lined up, and spots are starting to fill up!
Last but very not least, I found out a few weeks ago that I was named in the top 15 Ambassadors for 2015. It takes a lot to make me speechless, but that did it! The program connected me to the online (#doc) and local diabetes community in ways I never imagined, and I ran with it.
I think I found my voice.
Tuesday, December 1, 2015
Sometimes It's the Little Things That Get Us
It occurred to me as I was sending an instant message to my husband (during the work day) about a roller coaster of a blood sugar day; that sometimes it's the little things that we deal with as people with Type 1 diabetes that add up and make us want to scream. Not that the big things don't get to us to, but it feels like those are easier to explain and possibly easier for the outside world to understand.
The little things, you ask?
Like today: my blood sugar quickly dropped from 125 to 59. Just as I was eating lunch. My hands shook, I felt dizzy. In my head I knew that the food I was consuming for my lunch would kick in, yet I still gobbled down some Skittles. And as expected my blood sugar went higher than it should have post meal. So. Annoying. More annoying? Is that I bolused correctly for everything. Then low again a few hours later.
Or like that time my jabber, I mean lancing device fell to the bottom of my purse and I couldn't find it so I manually poked my finger with the lancet. Then found it as soon as I was done.
Or how about having to eat when you aren't hungry because your blood sugar is low? Or eating to bring your blood sugar up before working out which you are doing in hopes of losing weight? Or eating after the workout because something went awry with the temporary basal you set on your pump before working out?
Or being convinced you were given regular Coke not diet Coke despite the server confirming. And your blood sugar spiking later because you were right.
Or snagging your insulin pump tubing on the doorknob and the infusion set that you just put in gets pulled out.
Most of us laugh these things off since they are somewhat trivial in the day in the life of a Type 1 diabetes. But they are annoying. And when more than one happen in the matter of a few hours, it makes you want to scream.
The little things, you ask?
Like today: my blood sugar quickly dropped from 125 to 59. Just as I was eating lunch. My hands shook, I felt dizzy. In my head I knew that the food I was consuming for my lunch would kick in, yet I still gobbled down some Skittles. And as expected my blood sugar went higher than it should have post meal. So. Annoying. More annoying? Is that I bolused correctly for everything. Then low again a few hours later.
Or like that time my jabber, I mean lancing device fell to the bottom of my purse and I couldn't find it so I manually poked my finger with the lancet. Then found it as soon as I was done.
Or how about having to eat when you aren't hungry because your blood sugar is low? Or eating to bring your blood sugar up before working out which you are doing in hopes of losing weight? Or eating after the workout because something went awry with the temporary basal you set on your pump before working out?
Or being convinced you were given regular Coke not diet Coke despite the server confirming. And your blood sugar spiking later because you were right.
Or snagging your insulin pump tubing on the doorknob and the infusion set that you just put in gets pulled out.
Most of us laugh these things off since they are somewhat trivial in the day in the life of a Type 1 diabetes. But they are annoying. And when more than one happen in the matter of a few hours, it makes you want to scream.
Monday, November 9, 2015
10 things to feel lucky about
I've had Type 1 diabetes for over 40 years, and Celiac for about 38 years. Today I am feeling lucky. It was a very diabetes weekend with an American Diabetes Association meeting where I connected with people from many areas around New England; and a #betesontap apple picking adventure. Having a very diabetes weekend makes me thankful/lucky/grateful.
1. I am lucky that in 1974 when I was diagnosed there were some issues with the initial diagnosis but that it was diagnosed with no DKA, or coma.
The back story: On April 24, 1974 my mom went to a PTA meeting and one of her friends who was a nurse saw me and noticed I didn't look well and insisted we go to the hospital. The ER lost the urine sample; they thought it was other things they did a blood count, but not blood sugar. The blood count was high, which they said was an infection so they were going to keep me in the hospital overnight. I believe they started me on IV insulin but much later than they should have. My mom says she was very annoyed with them (her words) and what they were doing and had me moved to a Columbia Presbyterian hospital in NYC to a well known pediatrician.
2. I am lucky that at the time of diagnosis my blood glucose was around 500 (thanks mom for that info), and not higher.
3. I'm lucky that I was diagnosed with Celiac at age 6, when no one knew what it was. Lucky in the fact that they found out what was making me so sick.
4. I am thankful that when I was 12 my parents agreed to send me to overnight camp, Camp Nejeda. Not just any camp, but at camp for kids with T1D.
5. I am lucky that so many years later I am still in touch with people from camp that I was a camper with, that were my campers, and that were my counselors. To this day I still credit Camp with how I deal with the social aspects of having diabetes.
6. I am grateful that despite my retina looking like Swiss cheese from thousands of laser burns due to diabetes retinopathy (complication) I can still see.
7. I am lucky that I have friends that offer to pick me up when we go out at night since they know my night vision isn't the best from the above mentioned laser.
8. I am lucky to have the love and support of my family.
9. I am grateful that I have access to an insulin pump and continuous glucose monitor. I feel that both have made diabetes management a lot easier.
10. I am grateful, thankful, and lucky to have been selected as a MiniMed Ambassador. I've learned a lot; connected with other people with diabetes I wouldn't have had the opportunity to have met & have found support I didn't realize I was missing.
1. I am lucky that in 1974 when I was diagnosed there were some issues with the initial diagnosis but that it was diagnosed with no DKA, or coma.
The back story: On April 24, 1974 my mom went to a PTA meeting and one of her friends who was a nurse saw me and noticed I didn't look well and insisted we go to the hospital. The ER lost the urine sample; they thought it was other things they did a blood count, but not blood sugar. The blood count was high, which they said was an infection so they were going to keep me in the hospital overnight. I believe they started me on IV insulin but much later than they should have. My mom says she was very annoyed with them (her words) and what they were doing and had me moved to a Columbia Presbyterian hospital in NYC to a well known pediatrician.
2. I am lucky that at the time of diagnosis my blood glucose was around 500 (thanks mom for that info), and not higher.
3. I'm lucky that I was diagnosed with Celiac at age 6, when no one knew what it was. Lucky in the fact that they found out what was making me so sick.
4. I am thankful that when I was 12 my parents agreed to send me to overnight camp, Camp Nejeda. Not just any camp, but at camp for kids with T1D.
5. I am lucky that so many years later I am still in touch with people from camp that I was a camper with, that were my campers, and that were my counselors. To this day I still credit Camp with how I deal with the social aspects of having diabetes.
6. I am grateful that despite my retina looking like Swiss cheese from thousands of laser burns due to diabetes retinopathy (complication) I can still see.
7. I am lucky that I have friends that offer to pick me up when we go out at night since they know my night vision isn't the best from the above mentioned laser.
8. I am lucky to have the love and support of my family.
9. I am grateful that I have access to an insulin pump and continuous glucose monitor. I feel that both have made diabetes management a lot easier.
10. I am grateful, thankful, and lucky to have been selected as a MiniMed Ambassador. I've learned a lot; connected with other people with diabetes I wouldn't have had the opportunity to have met & have found support I didn't realize I was missing.
Wednesday, October 28, 2015
Twitter & the Diabetes Online Community (#DOC)
I created my Twitter account in 2009 or the purpose of contacting a company for customer service issues. By June 2015 I had about 150 followers, mostly people I had an email address for that were also on Twitter. The ole' "you follow me and I'll follow you." I had no idea how to attract followers, even though I googled-it a few times. The suggestions were to join a Twitter-chat, which made no sense to me.
I was fortunate to have gone to Camp Nejeda (overnight diabetes camp in New Jersey); and through Facebook been in contact with my fellow campers and counselors. All seemed right in my #DOC world.
That all changed in July when I attended #MasterLab, (as a guest of Medtronic Diabetes) where I live Tweeted From barely posting a Tweet in months, I learned very quickly the ins and outs of Tweeterand slowly but surely I was gaining followers.
The Tweeting didn't stop there though. I learned about the #doc and Twitter chats #dsma, and #dcde. I try to participate each week and sad when I can't. The folks of these chats have become an extended family to me.
Today I have 482 followers, and I log into Twitter a few times a day to see what's going on. It's become the first place I go to get a pulse on what's happening in the word of diabetes!
I was fortunate to have gone to Camp Nejeda (overnight diabetes camp in New Jersey); and through Facebook been in contact with my fellow campers and counselors. All seemed right in my #DOC world.
That all changed in July when I attended #MasterLab, (as a guest of Medtronic Diabetes) where I live Tweeted From barely posting a Tweet in months, I learned very quickly the ins and outs of Tweeterand slowly but surely I was gaining followers.
The Tweeting didn't stop there though. I learned about the #doc and Twitter chats #dsma, and #dcde. I try to participate each week and sad when I can't. The folks of these chats have become an extended family to me.
Today I have 482 followers, and I log into Twitter a few times a day to see what's going on. It's become the first place I go to get a pulse on what's happening in the word of diabetes!
Monday, August 24, 2015
The (mis)Adventures of Social Media and Diabetes
According to merriam-webster.com the definition of social media:
forms of electronic communication (as Web sites for social networking and microblogging) through which users create online communities to share information, ideas, personal messages, and other content (as videos)
With social media we are in charge of what we post. It's all up to us, it's all in our control. What's not in our control is what and how people respond. Just like in life, where we have no control over how people will react to something we say; social media is the same.
The other aspect is that we all come to the table with different perspectives. I write and post from my experiences and you read and react based on your experiences. Most of the time we're on the same page, but what happens when we're not and someone posts something that's out of line, or completely wrong, or just rude? If it it was a conversation at the dinner table it might not have gone awry due to tone and inflection, and also a natural path of conversation. On social media we usually post snippets and we don't provide the whole background as to what got us to that snippet.
At the dinner table we have the opportunity to explain, and probe and ask questions, before jumping to conclusions. Why don't more of us do that on social media instead of jumping to wrong conclusions? Is it because it's viewed as "just a post on Facebook?" I'm not sure.
Everyone manages their social media their own way. Some people post only about their kids. Some only post about sports. Some post everything. Some post nothing at all. Over the years I've posted all kinds of things: snow, cat transports, commuter train issues, fundraising events, gluten free adventures, travel. I've also used it as a place to vent about an issue; though rarely as a place for advice. For example "After seeing the doctor today, I have a new diagnosis of plantar fasciitis" 95% of the posts told me how to cure it. Even after I commented multiple times that I have a doctor and a plan. I know, people want to help. I'm the same way, I immediately go into problem solving mode. But not every post needs an answer, or is even asking for advice. In my head I thought by stating I had already been to the doctor would signal I wasn't asking for advice. That would have been "Does anyone have any suggestions on how to treat plantar fasciitis?"
After attending #MasterLab in July I have turned most of my Twitter and Facebook posts about diabetes. I feel that the more I share about life with it, perhaps the more people will learn and that there's a lot more to it than insulin and diet coke. The more engaged I am, the better I feel about having diabetes. If I could find a job dealing with any aspect of diabetes I'd take it in a heartbeat.
I posted something seemingly innocuous on Facebook the other day, and got an earful in one response.
My original post:
Going on 5 nights on really bad sleep. Hoping the Sandman helps out tonight. My thoughts are somewhat scattered. Could be why I think doing the JDRF Ride next year is a good idea.
wink emoticon
(I should know better than to post about not sleeping; as people will want to solve that problem for me.)
Most of the responses were fine, until this one:
Maybe try to stop thinking about your diabetes so much. I am all for advocacy, awareness and good control but focusing on it 24/7 can not be healthy mentally. Your posts suggest you think about diabetes all the time. It certainly can't be ignored but don't let diabetes dominate your life, as you know and have seen there is a whole big world out there. Don't let the diabetes win by taking up all of your precious time. Focusing every day on a frustrating, scary, unpredictable disease would send me over the edge. Did you ever think about taking a day off....not from testing and the control aspect but from all the rest of it? Everyone needs a break sometime and maybe it will help you sleep better.
I was outraged when I saw this. I came close to deleting this post and unfriending this person. At first I was going to respond right away, but I knew better. Then I wasn't going to respond at all. But I did respond hours later:
I have to admit when I first read this I was a bit angry, for blaming my sleepless nights on dealing TOO much with my diabetes. Then I realized your comments were out of concern, since we've not had the chance to sit down and chat about what I'm doing and why. I'd love to at some point though! .My rough nights don't have anything to do with diabetes - well one night did since I was low several times. The more I do, the more I help people, the more involved I am, the better I sleep. I love that people have been reaching out to me to help with all kinds of things. If I could find a paying job in the realm of diabetes I'd do it in a heart beat. It may only make sense to me, but there's where we are. If you have any questions/concerns feel free to send me a message so we can chat more.
Yes, it's true. I think about diabetes all the time. For me just doing the insulin and blood sugar testing isn't enough. I have gone through phases where I did the bare minimum and didn't talk about it or deal with it. That didn't help me at all. It impacts everything I do on some level and I want to do everything I can to help find a cure: help people to realize just how frustrating & scary this disease is.
The rewarding thing, the thing that keeps me going is that people have started to come to me with diabetes related matters. Some interactions have been simply to say thanks for posting. Some have been questions about how to help someone who needs supplies and doesn't have insurance. Some have been about Camp Nejeda. Some have been contacts for newly diagnosed, I love it. Seriously. Keep it coming!
The long of the short is please instead of first jumping to conclusions, ask a few questions. I'd have loved it if this person instead of lecturing me on changing something they didn't understand instead said "is something troubling you this week?" The answer to that question would have been "My husband has been traveling this week and I don't sleep well when he's away" Granted I could have posted that first, but hindsight is 20/20.
forms of electronic communication (as Web sites for social networking and microblogging) through which users create online communities to share information, ideas, personal messages, and other content (as videos)
With social media we are in charge of what we post. It's all up to us, it's all in our control. What's not in our control is what and how people respond. Just like in life, where we have no control over how people will react to something we say; social media is the same.
The other aspect is that we all come to the table with different perspectives. I write and post from my experiences and you read and react based on your experiences. Most of the time we're on the same page, but what happens when we're not and someone posts something that's out of line, or completely wrong, or just rude? If it it was a conversation at the dinner table it might not have gone awry due to tone and inflection, and also a natural path of conversation. On social media we usually post snippets and we don't provide the whole background as to what got us to that snippet.
At the dinner table we have the opportunity to explain, and probe and ask questions, before jumping to conclusions. Why don't more of us do that on social media instead of jumping to wrong conclusions? Is it because it's viewed as "just a post on Facebook?" I'm not sure.
Everyone manages their social media their own way. Some people post only about their kids. Some only post about sports. Some post everything. Some post nothing at all. Over the years I've posted all kinds of things: snow, cat transports, commuter train issues, fundraising events, gluten free adventures, travel. I've also used it as a place to vent about an issue; though rarely as a place for advice. For example "After seeing the doctor today, I have a new diagnosis of plantar fasciitis" 95% of the posts told me how to cure it. Even after I commented multiple times that I have a doctor and a plan. I know, people want to help. I'm the same way, I immediately go into problem solving mode. But not every post needs an answer, or is even asking for advice. In my head I thought by stating I had already been to the doctor would signal I wasn't asking for advice. That would have been "Does anyone have any suggestions on how to treat plantar fasciitis?"
After attending #MasterLab in July I have turned most of my Twitter and Facebook posts about diabetes. I feel that the more I share about life with it, perhaps the more people will learn and that there's a lot more to it than insulin and diet coke. The more engaged I am, the better I feel about having diabetes. If I could find a job dealing with any aspect of diabetes I'd take it in a heartbeat.
I posted something seemingly innocuous on Facebook the other day, and got an earful in one response.
My original post:
Going on 5 nights on really bad sleep. Hoping the Sandman helps out tonight. My thoughts are somewhat scattered. Could be why I think doing the JDRF Ride next year is a good idea.
wink emoticon
(I should know better than to post about not sleeping; as people will want to solve that problem for me.)
Most of the responses were fine, until this one:
Maybe try to stop thinking about your diabetes so much. I am all for advocacy, awareness and good control but focusing on it 24/7 can not be healthy mentally. Your posts suggest you think about diabetes all the time. It certainly can't be ignored but don't let diabetes dominate your life, as you know and have seen there is a whole big world out there. Don't let the diabetes win by taking up all of your precious time. Focusing every day on a frustrating, scary, unpredictable disease would send me over the edge. Did you ever think about taking a day off....not from testing and the control aspect but from all the rest of it? Everyone needs a break sometime and maybe it will help you sleep better.
I was outraged when I saw this. I came close to deleting this post and unfriending this person. At first I was going to respond right away, but I knew better. Then I wasn't going to respond at all. But I did respond hours later:
I have to admit when I first read this I was a bit angry, for blaming my sleepless nights on dealing TOO much with my diabetes. Then I realized your comments were out of concern, since we've not had the chance to sit down and chat about what I'm doing and why. I'd love to at some point though! .My rough nights don't have anything to do with diabetes - well one night did since I was low several times. The more I do, the more I help people, the more involved I am, the better I sleep. I love that people have been reaching out to me to help with all kinds of things. If I could find a paying job in the realm of diabetes I'd do it in a heart beat. It may only make sense to me, but there's where we are. If you have any questions/concerns feel free to send me a message so we can chat more.
Yes, it's true. I think about diabetes all the time. For me just doing the insulin and blood sugar testing isn't enough. I have gone through phases where I did the bare minimum and didn't talk about it or deal with it. That didn't help me at all. It impacts everything I do on some level and I want to do everything I can to help find a cure: help people to realize just how frustrating & scary this disease is.
The rewarding thing, the thing that keeps me going is that people have started to come to me with diabetes related matters. Some interactions have been simply to say thanks for posting. Some have been questions about how to help someone who needs supplies and doesn't have insurance. Some have been about Camp Nejeda. Some have been contacts for newly diagnosed, I love it. Seriously. Keep it coming!
Tuesday, August 18, 2015
My (Diabetes) Camp Story
I was diagnosed with diabetes at the age of 2, many many moons ago.
From the ages of 2 to 11 my dad gave me my injections. Only in the arm. The injection had to be the arm so I could see what he was doing. I remember injection time was also the time I would help him pick out the tie to wear to work. I think my parents tried to make something negative into something positive. But I digress, this is about camp.
I was 10 years old the first time I went to camp. It was a day camp and I did not like it. At all. Ok, I liked some of it, but the way they handled (or didn't) a camper with diabetes made any of the good parts fade into the background. The staff didn't know much about diabetes and didn't seem to learn or ask questions which ended up with me singled me out a lot. Not because they were trying to make me feel bad, or different, but because they had no clue how to handle the situation. I only attended one summer.
I know I asked my parents about trying overnight camp which probably made their blood pressure go up a bit. But they did their research and learned about Camp Nejeda.
My first summer at Nejeda was in 1983. I arrived late because my dad was sick so he couldn't take me, and we had to find an alternate way to get to Camp. If you've ever been to camp you know how important those first few hours are! So, there I was - first time away from home, first time at Camp Nejeda, and late. I was very fortunate that Frani C. was my counselor that summer. She made everything ok. I felt safe with her, and comfortable as well. She called my gluten-free food "Phyllis Food" which took the stigma out of it. I met so many wonderful people. Another counselor who had a profound influence on me was Ted. I have no idea how I got on his radar, but any time he saw me he'd shout my name really loud. Not just a "hey Phyllis" but "Phyyyyyyyyllllllllliiiiiiiissssssssssssss" Did I mention it was loud? I was embarrassed the first dozen times he did it but then I started to like it, and like the attention it brought. I know now that he was doing it to draw me out of my shy little shell. That summer I learned to give myself my own insulin injection. I was late to the party with that but one day a wise nurse told me that she wasn't going to do it and I had to. You may think that harsh but she somehow knew I could and would and didn't give me the option not to. (Thanks Jean C!)
Another magical part about attending diabetes camp is that since everyone else has diabetes too, the non-diabetics felt the odd man out.
If you didn't feel well or had low or high blood sugar it was dealt with and life went on. Not only did we do normal camp stuff like boating, archery arts and crafts, but also had diabetes and nutrition classes.
Another strong memory I have is an overnight canoe trip on the Delaware River. We canoed all day, then camped out in tents. All was fine for dinner, then our bon-fire. At some point in the middle of the night we woke up to hear Steve C. yelling. Apparently skunks got into our food, which made Steve upset. Of course he was, he was responsible for us, and our food, and you know diabetics and their need for food! I don't quite remember all of the details.
Ah, the stories, the memories...
You should know that the magic of camp doesn't end when you stop going. The friends and connections are your friends for life. Thank goodness for social media and email - makes keeping in touch and getting help and support so much easier than sending a letter in the mail (though I do miss those days!)
As you can tell, Camp holds a very special place in my heart, and always will. You can probably imagine how much money it takes to run camp -- to provide enough nurses, and doctors to help ensure a safe, and fun camp experience; food to feed everyone; maintenance and so on.
In closing, if you have a few extra dollars in your budget and would like to make a donation to Camp Nejeda for their 2016 fundraising campaign, I know many many people, including myself that would appreciate it: http://tinyurl.com/jd6hwtv
Note: There were so many other people I met along the way that I could write a novel about, but I'll save that for another day. Just know that even though I've only singled out a few, there were many counselors, nurses, doctors, campers that made a lasting impression.
Subscribe to:
Posts (Atom)