Contemplate, Relate, Educate - share your perspective!
a friendly educational opportunity
This is directed at all types of diabetics - 1, 2, 3, etc.! I want to hear from you about what you wish others knew about your struggle. Make it personal - about your OWN struggle. Please attack no one else's. Read what others write. Respond ONLY in the affirmative, supportive way that we respect here at TuD. Perhaps this will help us collect thoughts for the diabetes handbook project!
This T1's Perspective
1. I actually can't eat anything I want and just take insulin. Insulin dosages are imprecise at best. I must restrict my carb portions for good control, just like you. When I eat something that's a poor choice, I suffer for it, too. Sometimes immediately. Often all night long. Yes, I can eat cake. No, I shouldn't. Yes, there are T1s who make poor dietary choices. Just as there are Type 2s who do the same.
2. Sometimes I do want sympathy for having been diagnosed with a chronic disease as a little girl. I didn't ask for the sympathy then, but I sometimes feel the lack of respect for it now and wish I had taken advantage of that then. I wish selfishly that more people knew how hard it was. Demanding that level of responsibility and micromanagement from a small child or a teen and making her listen to the stories about how she'll never have kids or she'll lose her toes... Grant me a little pity party now and then. That was rough. Please don't tell me to get over it. Of course I need to get over it. If I were over it, would I have come to a support community?
3. If I don't test 10 or more times per day, and sometimes even though I do, I can still spend much of the day low or high. I am fortunate enough to have both a pump and a cgms, and in-range blood sugars are STILL a pipe dream most days. I still test 6 or 7 times a day, even with a CGMS.
4. I know a woman who died in her sleep of a low. Many T1s are scared of this nearly every night, which is why some fight so hard for CGMS and alert dogs. The other night, my CGM awoke me after I had plummeted to 29. Some type 1s suffer regular seizures, too. I am glad I have never. I admit that I can't imagine how awful that must be to seize from a low.
5. I was diagnosed in a coma, DKA, with a blood sugar of over 1000 and almost died. I take DKA very seriously and hope never to do that again.
6. I joined here because my T2 friends, colleagues, and acquaintances did not know how to relate to my struggle to have a healthy pregnancy. For T1 women, this is perhaps the greatest struggle we face if we decide we would like to start a family. For this, we not only struggle with our self-management before, during, and after pregnancy, but we also face some of the nastiest comments and prejudices from those who feel we are irresponsible for trying or endangering our children.
7. For me, basically, I think that I share T2's desire for control, desire for respect, struggle for self-discipline, fear of complications, fear of the unknown, need for supportive family and doctors, need for better insurance coverage for my supplies and medicines (in the U.S.), and hard work toward healthy diet and exercise regimens.
Where I feel we differ is in:
---isolation (T1 is less common and we often grow up not knowing any other T1s, although this could apply to anyone living in an isolated environment)
---immediate survival needs (I am so worried about these throughout the day that the concerns I list above become decidedly secondary)
---stolen childhood/teenagehoods (where applicable, obviously doesn't apply to my LADA friends)
---generally wider swings in blood sugar, affecting our long-term and short-term safety on a more frequent basis (although this is not altogether exclusive to T1)
So, can you relate? Do you agree? What's your take on your own struggle? What do you wish I knew?
This is directed at all types of diabetics - 1, 2, 3, etc.! I want to hear from you about what you wish others knew about your struggle. Make it personal - about your OWN struggle. Please attack no one else's. Read what others write. Respond ONLY in the affirmative, supportive way that we respect here at TuD. Perhaps this will help us collect thoughts for the diabetes handbook project!
This T1's Perspective
1. I actually can't eat anything I want and just take insulin. Insulin dosages are imprecise at best. I must restrict my carb portions for good control, just like you. When I eat something that's a poor choice, I suffer for it, too. Sometimes immediately. Often all night long. Yes, I can eat cake. No, I shouldn't. Yes, there are T1s who make poor dietary choices. Just as there are Type 2s who do the same.
2. Sometimes I do want sympathy for having been diagnosed with a chronic disease as a little girl. I didn't ask for the sympathy then, but I sometimes feel the lack of respect for it now and wish I had taken advantage of that then. I wish selfishly that more people knew how hard it was. Demanding that level of responsibility and micromanagement from a small child or a teen and making her listen to the stories about how she'll never have kids or she'll lose her toes... Grant me a little pity party now and then. That was rough. Please don't tell me to get over it. Of course I need to get over it. If I were over it, would I have come to a support community?
3. If I don't test 10 or more times per day, and sometimes even though I do, I can still spend much of the day low or high. I am fortunate enough to have both a pump and a cgms, and in-range blood sugars are STILL a pipe dream most days. I still test 6 or 7 times a day, even with a CGMS.
4. I know a woman who died in her sleep of a low. Many T1s are scared of this nearly every night, which is why some fight so hard for CGMS and alert dogs. The other night, my CGM awoke me after I had plummeted to 29. Some type 1s suffer regular seizures, too. I am glad I have never. I admit that I can't imagine how awful that must be to seize from a low.
5. I was diagnosed in a coma, DKA, with a blood sugar of over 1000 and almost died. I take DKA very seriously and hope never to do that again.
6. I joined here because my T2 friends, colleagues, and acquaintances did not know how to relate to my struggle to have a healthy pregnancy. For T1 women, this is perhaps the greatest struggle we face if we decide we would like to start a family. For this, we not only struggle with our self-management before, during, and after pregnancy, but we also face some of the nastiest comments and prejudices from those who feel we are irresponsible for trying or endangering our children.
7. For me, basically, I think that I share T2's desire for control, desire for respect, struggle for self-discipline, fear of complications, fear of the unknown, need for supportive family and doctors, need for better insurance coverage for my supplies and medicines (in the U.S.), and hard work toward healthy diet and exercise regimens.
Where I feel we differ is in:
---isolation (T1 is less common and we often grow up not knowing any other T1s, although this could apply to anyone living in an isolated environment)
---immediate survival needs (I am so worried about these throughout the day that the concerns I list above become decidedly secondary)
---stolen childhood/teenagehoods (where applicable, obviously doesn't apply to my LADA friends)
---generally wider swings in blood sugar, affecting our long-term and short-term safety on a more frequent basis (although this is not altogether exclusive to T1)
So, can you relate? Do you agree? What's your take on your own struggle? What do you wish I knew?
Replies to This Discussion
-
Permalink Reply by Gerri on -
Hi Karen,
Sorry to hear of your struggle. Terribly distressing to not have adequate medical support or education. Actually, it's infuriating! Glad you're here because there are wonderfully helpful people to share with & learn from.
I hope you will reconsider insulin. There's nothing to freak about taking something your body needs to help with control. When meds don't help, insulin is a lifesaver. Promise you that injections don't hurt & there won't be the side effects many have on oral meds. Most importantly, insulin will preserve your beta cells & you'll feel much better when BG isn't high. There are Type 2s members here taking low doses of insulin.
Hoping your new doctor is someone who cares.
Please keep us posted & don't hesitate to ask whatever you'd like to know. We're not doctors, but there's a vast storehouse of knowledge here.
-
Permalink Reply by debb on -
karen, i agree with gerri. from everything i have heard about insulin, in the long run it's much better for you then the meds. there is the problem with weight gain if you do not follow through with watching your carbs, but the problems are less. there can be many different side effects with the oral meds while there are less (if any) with the insulin. my next step was going to be insulin because of the dawn phenomon had i not had gastric bypass, i am a t-2. i'm only a month our from the surgery and i am no longer on the oral meds and my bs are hanging arond 108 to 128. i've lost about 14 pounds so far. i don't advocate gastric bypass for everyone though. it's a drastic measure that i spent two years waffling back and forth on before deciding that it was right for me. gastric bypass helps t-2's but not
t-1's.
definitely get a different doctor. both for your diabetes and for your counciling. never take less then 100% interest in your health from your doctor's. mental health is just as important as your regular health when it comes to your diabetes. if your doctor's are ignoring it then it's time to find a new ones.
you didn't say what the problems you are having with your legs are. can you be a bit more forthcoming on that? maybe we can give you some suggestions on what to be checking out on that.
-
Permalink Reply by Khürt Williams on -
I'm Type 1.5 (LADA). I was diagnosed at a very young age of 39 (LOL). I took it all in stride. The need to weigh/measure every piece of food. No more enjoying a cup of ice cream with the kids on a hot summer after noon. The need to test, test and test some more. I hate that part. I really do. I think testing is the worst part of having this disease. The need to inject insulin. I hate this too. I hate how my body feels after I bring it back from a low. I hate the highs. It means I have to be more careful at the next meal. I hate no longer being able to eat certain things (mangoes) and rum and raisin ice cream.
My father-in-law has type 2. I remember the first time my sister-in-law called because they were panicked. He was having a "low". He had a BG of 80. At first I wanted to laugh. I wanted to say, "That's nothing". But I didn't. I remember how I felt when I had my first low (BG of 32). Instead I said, get him some juice and out him on the phone. I talked to him and calmed him down.
What do I wish you knew? I wish you knew that deep down, I really HATE diabetes.
-
Permalink Reply by molly hall on -
I am reading all your comments and crying at the same time. I wish I would have found this site a year ago. Diabetes is so overwhelming. There is so much to learn and know.
I was misdiagnosed as a T2 a year ago. Last week, after trying a lot of other treatments, my Doctor diagnosed me as a T1. In one way, I was relieved. As a T2, nothing worked and I had made many changes in my life (lost a significant amount of weight, exercised, took all my meds faithfully) Yet, I still couldn't get control. I just knew I had to have done something wrong, but for the life of me, I just couldn't figure out what. In another way, I felt such a lose and so hopeless.
My Doctor doesn't understand. I ask lots of questions and sometimes I cry when I visit her, mostly out of frustration, and she says I just have an OCD personality, that things will be fine. She has recommended counseling but I can't make her understand that I'm grieving the lose of my old life. I know it will get better. What other choice do I have? I seem to think I'll feel better when my sugars are under control and I'm hoping the Humalog, that I just started a week ago, will do just that. So far, so good.
I hate what this has turned me into. I'm grumpy and tired and maybe I do obsess about it, ok I do, although it's the only thing in my life I do obsess about. I hate that my family suffers because of it. My 15 year old son, who by the way is a drill seargent when it comes to my exercise routine, asks me everyday what my BGs are. I hate that he worries about it. I hate that everytime I wake up with a low in the middle of the night, my husband is then awake trying to help and yet feeling helpless.
I want Doctors to know that just because they have all the knowlege and it seems so simple to them, doesn't mean it feels that way to their diabetic patient. Have some compassion for crying out loud! And for Heaven's sake, take time to answer questions. You are our main resource. I also want Doctors to know that they shouldn't just assume that because a patient is overweight and are middle aged they are type 2. And please stop telling people that if they just lose the weight, they will have a reversal in their diagnosis. It isn't always true and it's devastating when you do just that and you don't get that reversal.(I had an ER Doc tell me that)
I want everyone else to know that there are some good things that came out of my diagnosis.
1. I live a much healthier life than I did before. I tell people that diabetes made me make changes to my lifestyle that I wouldn't have made otherwise.
2. My niece was diagnosed with type 1 in Jan. If I wouldn't have already been a diabetic, my sister wouldn't have realized what the symptoms were and wouldn't have known what was wrong with her. (She was very sick when she was taken to the hospital and had to be life flighted to a childrens hospital for treatment.) I can't tell you how relieved I am that she is ok and that maybe, in some weird way, I was supposed to be diagnosed first to help her.
Be kind to everyone you meet. We are all facing some kind of struggle.
-
Permalink Reply by Karen Leigh on
-
Molly Hall I am so pleased to read what you have written. It says so much of what I feel. This is where my real battle is, inside my head which does not accept diabetes as part of my life.
Thank you Gerri and Debb for your comments. I think the new doctor is a tiger and isn't going to just ignore me. I am due back on Friday to get the results of the x-rays and to see what comes next. The pain in my legs varies. From bone deep aching that doesn't let me sleep at night in lower and upper right leg to being unable to walk very far because my hips and lower back give out and my legs get so weak I fear falling. As I don't have a car, I really can only get around by walking or public transport for distances. Seems every month something new and more depressing. I am not used to feeling so negative, this isn't me.
-
Permalink Reply by debb on
-
karen, i hope you figure out what is wrong soon. it could be anything from restless leg to sciatica. i need surgery in both of my hips for torn ligaments but i am working on losing weight first to see if that helps. ( i was dragged by a horse many years ago and only now am having problems from the torn ligaments). i also suffer from restless leg syndrome. that runs in my family. the sciatica can run from the butt up the back and/or down the legs. if i was standing for long periods of time i would be practically crawling home from work with tears running down my face until i could get into the recliner chair with my legs up. the pain was horrible. my sister-in-law is a nurse and she told me if i am just standing to put my foot up on something that is about 6 to 12 inches from the floor to help aleviate the pain. it worked a little bit. let us know what you find out.
-
Permalink Reply by molly hall on
-
Karen,
I hope you're feeling better soon. I'll be thinking about you on Friday. Let me know how it goes.
-
Permalink Reply by Lauren Miller on -
Being in the seventh grade going into a new year as a different person than I was in sixth grade was very difficult for me. Summer was a struggle because my dad had just started a new job where it involved traveling a lot out of state. The week I was diagnosed it was his first week on the job and he was in St. Louis, Missouri. After that friday night of being diagnosed he didnt want to leave me again. So here are a few things i want everyone to know about me.
1.) I was diagnosed on a friday after my mawmaw and pawpaw noticing the symptoms and them holding me down to prick my little pinky. My mawmaw, my other grandmother, and my mom were the ones who were with me through the first night. I am very grateful for my mawmaw because she stuck beside me through the whole weekend and now 4 years later she still worries so much about my health. But my point is the next day my mawmaw brought me a guardian angel, my mom was on the phone, crying. i took the phone from her and told her to wipe them tears away and get over it because this is real and we have to deal with it. Shes always reminded me of them words everytime i feel down in the dumps. She told me I was a very brave 11 year old.
2.) When I was diagnosed it was 13 days before my birthday and I cried for the first time after being diagnosed all because I thought I wasnt going to be able to have birthday cake on my 12th birthday.
3.) While I was in the hospital for them 3 days that was when I became so interested in writing.
no my fears, worries, and problems.
1.) People dont understand how difficult it is to deal with this everyday, they dont realize that we dont get a break from it, its constantly something we have to watch and take care of, its like its never ending and people dont take the time to think about how we do deal with it emotionally.
2.) Like other diabetics...sleeping is a huge problem of mine. I dont sleep a lot...im usually awake until 5 in the morning and wake up at 9 that day. Its scary to imagine not waking up for when you do wake up you could be laying in a hospital because of a coma. My best friends grandmother died not from the heart failure she had nor the bad nerve damage...she died from dropping into a diabetic coma in the hospital during her sleep.
3.) Im not shy and I dont mind taking my insulin shots, or checking my blood out in public. The problem is other people that stare and dont even bother asking questions or at least ask what im doing instead of screaming out steriods or laughing. If you have a problem with blood or me taking shots where everyone can see...then please just dont stare.
4.) Not many people support me or make sure im ok...I usually do things on my own and learn from all my mistakes on my own. except my grandmother but she lives far away now.
5.) When im feeling sorry for myself...instead of throwing a pity party...i go into my room and i write all my problems down and I write about my diabetes.
6.) I saved a little girls life about 3 months ago...she is new to the diabetes, her name is Brooke, and she came to me cause she knew i was confident and I held myself up as a person and she knew that I was strong and I handled it well on my own. She came to me and I helped her understand that shes not alone and to not let it bring her down, only make her stronger. Her A1c now is 6.3 and im very proud of her
7.) I am the only type 1 diabetic in my entire family.
8.) My pinky on my right hand is my favorite finger to use to check my blood. It is caloused very badly but it doesnt ever hurt.
9.) I can eat cake and pies and cookies whenever I want and my blood never goes high. I dont eat it but like on holidays I dont have to bolus for it cause I will drop too low. So if im low sometimes I eat apples or peanut butter.
and 10.) I am not ashamed of my diabetes and if I could I would share my story with the world because it has made my life the way it is and has made me who I am. Without diabetes coming in my life I dont know how my life would be today.
- ‹ Previous
- 1
- …
- 4
- 5
- 6
- Next ›
Spread the word
Our Programs
 |
 |
 |
 |
 |
Groups
-
Christian Diabetics
365 members
-
Geeks With Diabetes
459 members
-
We want real food!
125 members
-
Canada Diabetes
283 members
-
Weight loss help..Daily…
19 members
-
parents of kids with Typ…
540 members
-
Dexcom Users
230 members
-
Minimed Paradigm Insulin…
616 members
-
Oh! BABY!!!
241 members
-
Omnipod Users
596 members
Diabetes Resources
TuDiabetes Team
 Manny Hernandez |
 Andreina Davila |
 Kristin |
 Lorraine |
 Scott |
 Teena |
 MelissaBL |
Other Volunteers
Follow @tudiabetes
© 2010 Created by Diabetes Hands Foundation, P.O. Box 9421, Berkeley, CA 94709.
Diabetes Hands Foundation (DHF) is a 501(c)(3) nonprofit. Donations to DHF are eligible to be deducted.
Disclaimer
The contents of TuDiabetes is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition, including without limitation diabetes. Never disregard professional medical advice or delay in seeking it because of something you have read on TuDiabetes.
If you think you may have a medical emergency, call your doctor or 911 immediately. The Diabetes Hands Foundation does not endorse any specific tests, physicians, products, services, procedures, opinions, or other information that are advertised or mentioned on the web site.
TuDiabetes®, TuDiabetes.org®, Word in Your Hand™, Drawing Diabetes™, Diabetes Supplies Art™ and No-Sugar Added Poetry™ are trademarks or registered trademarks of the Diabetes Hands Foundation.
