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    • 3 hours, 41 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 1 day, 15 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 1 day, 17 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 21 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 22 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 23 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 1 day, 23 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 15 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 15 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 17 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 18 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 19 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 21 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 2 days, 21 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
    • 2 days, 22 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 22 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
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    New research found a gene that may put some people at higher risk for “long-COVID” (symptoms that persist after a COVID-19 infection, such as ongoing shortness of breath, fatigue, brain fog, or memory issues). What is your experience with long COVID? Share your experience in the comments.

    Home > LC Polls > New research found a gene that may put some people at higher risk for “long-COVID” (symptoms that persist after a COVID-19 infection, such as ongoing shortness of breath, fatigue, brain fog, or memory issues). What is your experience with long COVID? Share your experience in the comments.
    Previous

    If you use a CGM and share your real-time glucose levels with other people using an app (e.g., Dexcom Share, Carelink Connect, Nightscout, etc.), with whom have you shared your live CGM data? Select all that apply!

    Next

    In the past week, how many nights was your sleep disrupted by device alerts, checking blood glucose levels, or treating a high or low?

    Sarah Howard

    Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.

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    22 Comments

    1. John McHenery

      Not sure if it is really classed as a symptom but since having Covid I seem to produce excessive saliva.

      3 years ago Log in to Reply
    2. eherban1

      The results of this poll, so far, harkens back to the early Italian study that found during the height of the pandemic in Italy- that when the hospitals were overwhelmed, none of the patients in the hospital were T1Ds. I think there is cause to research the link between T1D and Covid 19 more closely.

      1
      3 years ago Log in to Reply
      1. Marty

        Dr. Jeremy Pettus, who is a diabetes researcher involved with the TCOYD organization, reported that, like T2Ds, T1Ds have elevated risk from COVID, particularly with poor diabetes control: https://pubmed.ncbi.nlm.nih.gov/33268335/

        3 years ago Log in to Reply
    3. Nevin Bowman

      I had covid twice after being vaccinated and boosted. Symptoms disappeared within 2 days both times.

      3 years ago Log in to Reply
    4. Lawrence S.

      I’m not sure. I had my first case of Covid 19 in May, 2023. Since then I’ve had constant congestion, shortness of breath, fatigue and memory issues. However, I had these conditions before I had Covid 19. I’ve dealt with asthma since childhood, fatigue often from hard workouts and muscle fatigue. I’ve always had a very bad memory. I have great difficulty remembering names, songs. Great difficulty with geometry because of the memorization of theorums, etc.
      It does seem that these conditions became more intense since having Covid 19. Constant Phlem that I cannot get rid of. Coughing constantly.

      3 years ago Log in to Reply
    5. Jane Cerullo

      After making it through the worst of the pandemic as a nurse in the hospital I contracted Covid in March 2023 while on vacation. Bummer. I was pretty sick for two weeks. Not eating and sleeping a lot. Some pulmonary issues. Had to see a pulmonologist. Was extremely fatigued for about three months then started to feel better.

      3 years ago Log in to Reply
    6. AimmcG

      I was diagnosed with MS in March of 2020 right before the Covid Shut down. I didn’t get Covid for a full 18 months. I was diagnosed with the only symptom being a headache when my son became sick and tested positive. My entire family got it but I didn’t become fully symptomatic until 3 weeks later. I was vaccinated but the doctors believe my body couldn’t fight off the repeated exposure from my family members. So to answer the question. My MS symptoms are brain fog, memory lapses, and fatigued so I’m not sure if these things are MS or Covid related or both. It’s just part of my life.

      3 years ago Log in to Reply
    7. Ken Raiche

      The biggest issue I still have after getting Covid at the beginning of December 2022 was my loss of smell and taste. This situation has yet to resolve itself I smell certain things but they are not what they use to be coffee doesn’t smell like coffee everything seems to have a onion or garlic like sweet odor to it. Hoping for things to return to normal some day.

      3 years ago Log in to Reply
    8. GLORIA MILLER

      66 years T1 and well controlled but I have had Covid twice. Fully vaccinated and boosted. Once I was asymptomatic and the last time it lasted 17 days before I tested negative. After two months some foods (and wine) taste very sweet that are not sweet but this is the only “long Covid” symptom I have and I assume it will go away in time.

      3 years ago Log in to Reply
    9. Scott Doerner

      I just had covid last week. I healed In about a week. Still have mild weakness, but do everything without a problem

      3 years ago Log in to Reply
    10. Carrolyn Barloco

      We had our second positive CoVID tests in February despite being vaccinated. My husband was negative in a week but mine lasted 2 weeks. What followed was intense shoulder pain, 12 physical therapy sessions, a rheumatology referral that resulted in tests showing inflammation and altered

      3 years ago Log in to Reply
      1. Carrolyn Barloco

        factors and I was started on Methotrexate. I still get monthly lab work now with normal results.

        3 years ago Log in to Reply
    11. Mark Schweim

      I never had COVID until AFTER I was “fully vaccinated” and at the time of my first instance of COVID, the “experts” and gooberment officials were still falsely claiming that being fully vaccinated would make you unable to catch or spread COVID!

      I had, and tested positive for COVID ZERO times prior to being fully vaccinated, but have had COVID and tested positive for it THREE TIMES after I was fully vaccinated.

      Two of my times with COVID, I had definite syptoms, but the second time, I tested positive for COVID but had nothing more than a mild sore throat that until the positive COVID test result, the doctor was saying was nothing but the “common cold.” Then after they got the test results back, the following day, the Doctors office called me and told me to stay home from work for the following ten days after having allowed me to go to work the night between my doctor appointment and the doctor getting my COVID test results back.

      3 years ago Log in to Reply
      1. AnitaS

        I have never heard the claim that being fully vaccinated would prevent you from getting Covid. It may help prevent it but not 100% prevent it.

        1
        3 years ago Log in to Reply
    12. Mick Martin

      I responded with “I’m not sure”, but what I can say is that I have definitely had COVID-19. This MAY have been contracted during a stay in hospital as I had been admitted after having a fall during the early hours of a specific day and wasn’t able to get myself up to get back in my bed. My youngest brother found me when he got up to get ready for work and found me lying in a pool of urine, vomit, excrement, and blood. He put me back into my bed and cleaned me up then shouted my wife to come and see, explaining how he’d found me.

      My wife telephoned a NHS (National Health Service, over here in the UK) telephone line for advice, who sent out an ambulance to admit me to hospital. The ward to which I was admitted had the nursing staff questioning why I’d been admitted to that specific ward as it was a ‘COVID Ward’, used for treating COVID-19 positive patients. I was moved into a side-bay and had my nose swabbed, which turned out that I was COVID-free. A second test confirmed that I had COVID-19.

      Since being discharged home, I have now received 4 Covid vaccinations, but the difficulty for me is that some of the symptoms of long-covid are present almost all of the time in me as I have various diabetes-related complications which require me to have a hospital bed at home. (I also have a sleep disorder, called narcolepsy, where the sufferer falls asleep inappropriately, which leaves me falling asleep several times a day, sometimes whilst I’m talking to someone, or sat in front of my computer.)

      3 years ago Log in to Reply
    13. Carol Meares

      I have taken every vaccination available to me to prevent hospitalization from CoVid. So far I have not gotten CoVid despite much travel and eating out. I mask when it makes sense (on planes, in crowded shopping areas) but there are many times it is difficult. I have been more lax recently. Viruses destroy me. I want nothing to do with this one. I know I will probably get it, or possibly have already had it without symptom, but have vax gratitude as my brother who never got a vaccination has had CoVid three times and exacerbated heart and autoimmune conditions drastically.

      3 years ago Log in to Reply
    14. Eva

      I didn’t feel well for a couple of days in Dec 2021. My doctor tested for FLU and COVID, but all came back negative. I chalk it up to supplements and enzymes to help my digestive and immune function. Everyone around me tested positive and had it pretty bad despite being vaccinated and boosted. Heard certain blood types (like blood type 0 negative ) don’t get as bad as others.

      1
      3 years ago Log in to Reply
    15. Kristine Warmecke

      I haven’t tested positive for COVID-19 thus far. I was tested just today for both COVID-19 & influenza. Waiting to hear the results.

      3 years ago Log in to Reply
    16. Wanacure

      I always get flu shots and whatever vaccinations are recommended. Never diagnosed with Covid, BUT about 4 years BEFORE Covid-19, I went 2 or 3 months with the same persistent symptoms, culminating in loss of smell and taste, and having my lungs mechanically cleared of mucous. I and another caught it while in a senior exercise class (closed doors) where someone was continuously coughing. Finally cured by taking 2 powerful antibiotics. Now I do 8’ of deep breathing exercises blowing forcefully into a Smith & Cline “Acapella” every morning. This seems to prevent congestion from building up. Nurses instructed me how to use the Acapella after cleaning out my lungs. I did not notice any “long-Covid-19” symptoms after FINALLY recuperating. No colds or flu since.

      3 years ago Log in to Reply
    17. Twinniepoo74

      I still have body aches and pains. Plus my asthma from covid pneumonia has gotten worse. I still have short term memory and seizures. Long term COVID is no joke doctors are still running test and finding other problems along with one’s I have now the long part is that covid pneumonia or covid does permanent damage to all of us some like me worse than others

      3 years ago Log in to Reply
    18. T1D4LongTime

      Tested positive after having unusual joint pain in the night and a low-grade fever in the morning. Fever rose quickly but peaked at 101. Pain stopped after a couple of hours. Runny nose and dry cough for a couple of days. Endo immediately put me on Paxlovid. I restarted 81 mg aspirin for several months to ward off stroke (diabetics are prone to post-covid strokes). Absolutely no long-Covid and having Covid was more an inconvenience than feeling sick.

      3 years ago Log in to Reply
    19. PamK

      I answered, “I’m not sure,” because I had COVID @ 2 months ago and still feel some shortness of breadth and tiredness. So, I can’t say how long my symptoms will last!

      3 years ago Log in to Reply

    New research found a gene that may put some people at higher risk for “long-COVID” (symptoms that persist after a COVID-19 infection, such as ongoing shortness of breath, fatigue, brain fog, or memory issues). What is your experience with long COVID? Share your experience in the comments. Cancel reply

    You must be logged in to post a comment.




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