Called Medtronic yesterday at 4:30pm with a battery issue we were having with Joshua's pump. We discussed it, and she went through some troubleshooting questions and decided we would need a new pump. This beauty turned up at my door by 7:40pm the same day! Absolutely brilliant customer service, cannot fault them at all. #medtronic#medtronicinsulinpump#lifesaver#type1diabetes#childrenwithdiabetes
Day Sixteen: An Invisible Illness 💉
Invisible illnesses. What are they?? Well, an invisible illness is generally regarded as a medical condition which one cannot see by merely looking at a person. There are no obvious visible supports, such as a cane, wheelchair or the use of sign language. They are permanent disabilities that are dealt with on a daily basis, but may or may not be treatable with the use of medication. Common invisible illnesses include: diabetes, psychiatric disabilities (depression, bipolar, schizophrenia, anxiety and others), epilepsy, HIV/AIDS, Chronic Fatigue Syndrome, etc.
Diabetes is very much an invisible illness, due to the fact that you cannot tell a person has it unless you perhaps saw their insulin pump, or saw them give insulin.
The main obstacle I encounter due to diabetes being an invisible illness is the misunderstandings and misconceptions that I often deal with. People can’t see it, so are you really sick?? It’s like the old conundrum ‘if a tree falls in a forest and no one is around to hear it, does it make a sound?’. Yes, I still have diabetes whether you like it or not! We also often encounter those common misconceptions, you know the ones. ‘Oh, but you’re not fat?’ or ‘too much sugar?’ or my favourite ‘oh, all you need to do is exercise and (insert healthy food and weird method of use)’ 🤦🏻♀️ All in all, yes, diabetes is an invisible disease, and that’s one of the more difficult parts to handle. The fact that it’s invisible is part of the reason I like to wear my pump/dexcom where they can be seen. The more awareness the less ignorant people are, the easier it will be on all of us! #t1dlookslikeme#diabetes#diabetesawarenessmonth#typeonediabetes#typeonelookslikethis#diabeteswarrior#insulinpump#medtronic#diabadass#t1d#type1challenge#dexcomg5#diabuddies#typeonederful#weneedacure#diabeteslife#type1diabetes#diabetesawareness#pump#insulinpump#prouddiabetic#partrobot#pumper#insulin
Работа с базой
Свою «идеальную»💪🏽компенсацию я вырабатывала не день, ни неделю и даже ни месяц, а целых полгода.🧐Подбирала все настройки под свой ритм жизни с нуля.
Теперь настройки меняются у меня редко, но метко.
Вы должны осознавать, что бы проверить базу -нужно время. И не бросать это дело, иначе смысла нет все корректировать.
Сейчас у меня нет борьбы с диабетом, по той причине, что он у меня на автоматизме. А вот сама борьба с диабетом была лет так в 17...🤪
Поэтому делюсь системой своего эндокринолога.
1) Проверяла сахара каждые 2-3 часа ( +ночные сахара) . Я кушала в том же режиме, что и всегда, и колола абы-как.
Такую проверку я делала 3 дня. Рисовала графики и смотрела где полная ж8па постоянно выскальзывает.
2) Ага, нашла! Это вечернее время. На графиках всегда была горка сахаров.
Убирала прием пищи (ужин). Т. е. без активного инсулина, мониторила 2 дня.
Смотрим: сахара без активного инсулина достигают отметки 13-15 ммоль.
3) Я на помпе, поэтому этот промежуток НИ В КОЕМ СЛУЧАЕ НЕ ПРИБАВЛЯЕМ_УБАВЛЯЕМ НА 1 ед, постепенно по 0,05 ед!
4) смотрю вновь, горка 11-13 ммоль (без активного инсулина) , прибавила еще по 0,05
и Так до тех пор, пока не увижу отметку 5-7 ммоль без активного инсулина.
5) Прошла неделя, смотрю на график и вижу, что на ужин более-менее аккуратный график.
6) Делала постепенно со всеми промежутками такую же работу.
-База не должна превышать процентное соотношение болюса. (50-50 пр, 60-40пр)
Если же база 70 или 80%, то все нужно менять.
В детстве мы хитрили и ставили базу на приемы пищи больше, чем на обычное время, в итоге кушали все подряд не кололи болюс и сахара были адекватными — ТАК ДЕЛАТЬ НЕЛЬЗЯ!
Желаю вам успехов в работе над сахарами!
Celebrating ten years brain tumor free this year. This montage reflects the journey there and back. I am forever thankful that @mayoclinic took a chance on me and had me become the 14th patient in this nation to have a cortical brain stimulator placed on my brain. I used to suffer unspeakable pain suffering from seven different types of #neuralgias post tumor resection. The worst one was called “the suicide disease” or #trigeminalneuralgia . #medtronic developed one of the most life saving devices and a complete answer to prayer.The ultimate #tbt#brainsurgery#cyborgmom#braintumorawareness#newlife
Day 15: Diabetic Cost of Living
This GIF literally explains it all...haha jk I know I'm not throwing the money out the window but the cost of medical supplies and Dr visits are crazy expensive! Just from Feb til now, I have spent easily $3k OUT OF POCKET, never mind what my insurance had "covered". And I have the top tier of the insurance offered in my company.
Theres really nothing you can do to fight the system when its the supplies you need to survive 🙄😒
I didnt choose the diabetic life, the diabetic life chose me 🤷♀️
☀️ Ahh, where to start. I’ve been asked to share my story on behalf of @amdiabetesassn to share my story with #type1diabetes and shatter the stereotypes of this disease. The handsome guy next to me is the person who FIRST put me on to this game we call the Diabetes Hustle, my uncle. .
. ☀️ For any new friends, my name is Ali Abdulkareem. I’m 22 years old and have been living with Type 1 Diabetes for nearly 4 years and aspire to make Diabetes content for living for our community. When I first got diagnosed, I promise to you all, I didn’t have a clue what was happening. Nothing. Zero. Units, novolog, meters all sounded like a foreign language. Maybe a day after seeing my family doctor to get misdiagnosed with type 2 diabetes, we called my uncle and got ALL the juice. Thank you Kalu and to everyone who gave me the love and support I needed. We all need. .
. ☀️Last note. For anyone non-Diabetics reading this. This disease we call Type 1 Diabetes is very challenging. It’s 24/7 365. No breaks. During sleep, during class, during family time, everyday. It’s not a simple snack disease, it’s intense and as someone who is striving to achieve a heathy life physically and mentally, I must work 10x harder to achieve somewhat normal health to my non-diabetics. Thank you for all the struggles. #everydayreality
. ☀️Learn as much as possible, cut your learning curve, use this as an advantage to be the greatest version of yourself. With love,
Ali Abdulkareem. .
Btw, I dislike that arm site Lol.
It was an honor to teach in the cadaver lab for #medtronic at the ASRA meeting! Here we are teaching placement of spinal cord stimulators and intrathecal drug delivery systems, two amazing and potentially life changing therapies for those with chronic pain👍👍 Fellow and resident education👨⚕️👩⚕️ is one of the best and most important parts of my job as an attending and faculty member. Physicians in training are the future generation of our specialty👩⚕️👨⚕️
Dia 15 do desafio #happydiabeticchallenge
15 = Quanto você gasta por mês com o diabetes?
Tendo em vista que a diabetes é a doença mais cara de todo mundo e o Brasil está em 4 lugar em relação aos números dessa doença. Já dá pra imaginar q não é nada baratinho.
1 caixa com fitas pra teste com 50 fitas = 100 reais (faço 6 testes diários, uma média de 200 fitas mensais)
1 frasco de insulina ultrarrapida = 90 reais ( gasto em torno de 1 frasco e meio)
Insumos pra bomba (canula, cateter, reservatório, sensor), uso cavilon, álcool a 70%, clorexidina degermante 2%, algodão, lancetas, pilhas... vai somando isso tudo. Difícil mensurar.
Atualmente paguei um advogado particular para dar entrada no processo contra o meu plano de saúde (que eu mesmo pago a anos e desde o contrato informei que era dm1) para conseguir os insumos através do plano.
Até então estou recebendo tudo.
Uma coisa que me apaixonei e vejo presente entre os docinhos é a compaixão e o entendimento para outro dm que não está recebendo insumos. As doações são grandes e importantes. Porém aquele que pega insumos ou recebe e não usa adequadamente, deveria mudar isso. Pois só lá na frente perceberá o quanto isso te fez mal.
E quantas pessoas que buscam se tratar e não tem acesso aos insumos como todos deveriam ter pelo SUS.
Fica o alerta e a consciência.
NDAM challenge #4 : Diabuddy
Well the fact that she is in my last two posts says it all—so so thankful to have met @runningwithtypeone. You have made such a difference in my life Ashley- diabetes related and everything else!! Love you ❤️
Day 15- Support
In my life I have so many people who support me and my diabetes. Some of my biggest supporters are my mom, dad, and sister. They have been with me since day one and supporting me through every high and low over the last 14 years! They have given me countless needles, checked my sugar throughout the night, changed my insulin site when I just can’t, and most recently they have changed my dexcom for me. They also get up through the night if I don’t hear my dexcom beeping, and they make sure I am okay and looked after. I am so lucky to have a family who supports me through this disease and is always there to lend me a helping hand when it becomes a little too much. I am also very lucky to have a community of friends who support me and are always there to have my back when diabetes gets just too frustrating. It is so nice to be able to message someone and have them understand exactly what I am going through and how hard diabetes can be! I am so grateful for all the people I have around me to help me get through the day.
☀️ New theory of mine. You know how people say money and fame changes you but many people are starting to realize from @garyvee and others that money and fame does NOT change you, it exposes who you’ve been all along. If you were insecure before you became rich, soon enough all your insecurities become amplified. If you were very kind and giving prior to your riches and fame, that becomes amplified. I think about this for us diabetics. .
. ☀️ For some of us who were diagnosed at a much later age (18 for me) this can click. Example, I have always been a “black n white” thinker or tendencies towards extreme ideology, I also hold too many high expectations for myself and beat myself constantly for everything. Now fast forward post diagnosis, I am very extreme with my management, food and I constantly beat myself up for every number. Good or bad because diabetes exposed who I’ve always been. .
. ☀️ Punchline, I think our flaws are okay. Think about what diabetes has showed you in how you deal with stress and your day to day. I believe we can all recognize them like myself here and learn to navigate our way to success. Share what you think Diabetes exposed out of you and how will you navigate it? 🦙🦙 .
. 👽👽🦙🦙 #t1dlookslikeme#t1d#diabetesawareness
Инсулиновая помпа. День 3. Сегодня мне установили систему мониторинга, я не использовал раньше сенсоров Medtronic, FreeStyle Libre или Dexcom, это в первый раз, думаю нужно будет посмотреть каждую систему мониторинга, сделаю обзоры в ближайшее время.
В теории и на бумаге кажется все сложно, коэффициенты, чувствительность, базальный, болюсный, на практике, когда делаешь все своими руками, понятнее, важно чтобы мы сами управляли своей инсулиновой помпой.
Врач-эндокринолог обучает как именно это нужно делать.
Какое у меня мнение от мониторинга?
Не могу сказать, что хорошее, но пока сомнительная необходимость, потому что есть задержка 5-10 минут и нужна калибровка сенсора с глюкометром, например лучше всего это делать перед едой. Возможно мониторинг это необходимость, только не всем это удобно.
Еще 1 важное замечание, оказалось, что инсулин, который я использовал все время (Новорапид) работает 4 часа, вместо 2 часов, это только время его пика, я всегда считал только 2 часа. 😨
Буду учится лучше.
Завтра буду дома. Меня отпустили на выходные, Маргарита Сергеевна мне разрешила. Напишу как будет с помпой в домашних условиях и не загрызет ли ее собака пока я сплю.
Смотрите мои Storis на личной странице.
Today is the 15th day of the happy diabetic challenge. I’m super lucky to get all of my prescriptions on the NHS 🏥. Meaning I don’t have to pay a penny for any of my treatment or medication (apart from hypo treatment). I love the NHS that much that I now work for them 💙
NEW TOY ALERT!! As a little pre-wedding treat to myself, I’ve decided to trial the Dexcom G6- thinking seeing my bloods on my wrist and getting alerts for highs and lows will be very helpful through all the busy-ness. I’m sooo excited to give it go, but have literally no idea where to start! .
Do you leave it in for 24 hours like the Libre or just plug in and go? Do the alerts come from your phone or your watch (if you’re not using the receiver) or both? Are there any must know tips or tricks?! Please help!!
I’M JUST SO EXCITED!! 😂🎉🎉 #cgmlife#dexcomg6#thisrobotgotanupgrade
Day 15 of #happydiabeticchallenge the cost of living...
For us from the Uk we have the majority of our supplies provided free of cost, which is a miracle and I appreciate it so very much! We don’t however all get CGM’s, therefore both Belle and I pay £100 a month for our #libre . It’s a lot of extra cost, but oh how it’s worth it!
Love Meg and Belle 🌻
#happydiabeticchallenge Day 15: Diabetic Cost of Living. I’m heading home to New York for 10 days today! This small pouch holds 2 weeks worth of my diabetes supplies: insulin, syringes, test strips, lancets, alcohol wipes, adhesive remover, pump set changes, @dexcom sensors, patches for my dexcom site,batteries. This little pouch is easily worth over $1000. Two weeks of supplies. $1000. The cost of life as a type 1 diabetic without insurance makes it nearly impossible to get by. I’m so lucky that I’m currently on a good insurance plan, but I fear for the day I turn 26 😱
Thanks to @type1livabetic David with the great info. I got my 10 year of living with T1D medal!!! .
I didn’t qualify for the 25 year one and the only options were 10 and 25 for me , but it will be 22 LONG & STRONG years in FEB!!! .
Perfect timing @elilillyco during NATIONAL DIABETES AWARENESS MONTH!! .
The LITTLE things are so BIG to us #warriors !!!! 💙
💙And, National Diabetes Awareness Month continues on! In our commitment to help bring awareness and find a cure, Sugar Medical is donating 10% of November sales of the Quest and Riley Universal Deluxe Cases to the JDRF.
Give a little, get a lot! 15% off with code: HOLIDAY15 until 11-18-18!
Day 15: Diabetic Cost of Living - Surprise! It’s STILL Expensive, but how expensive depends on a lot of factors. One of the most expensive liquids on earth, just insulin alone can be as much as $20/day. Do you have insurance? How good of a policy? Does your policy cover the best diabetes technology (pumps📟, CGMs📉📈, etc.)? Are you willing to pay out of pocket for stuff that insurance doesn’t cover much or at all? Do you stretch the limits (or beyond) of the recommended usage times for equipment (pump infusion sets, syringes💉, lancets, CGM sensors, etc.)? Have you had any ER visits from crazy hypos? 💸💸💸
I’ve been fortunate to have reasonably good insurance coverage for most of my adult life. I have made it a point to research and select insurance providers that have the best policies on covering new diabetes tech. My least expensive year was probably $2k+ between insulin, syringes, lancets, test strips. My most expensive year was likely close to $5k+ when I purchased a new pump, new CGM, insulin, lancets, test strips, sensors, infusion sets, and reservoirs for my pump. Without good insurance coverage, that could easily have been double or more. For the foreseeable future, my expenses will be relatively low. Working for a diabetes medical device company has huge benefits beyond the fulfilling work. #happydiabeticchallenge
#NatureKnowsBetter : Birds flying south for the winter can stay on track by using the Sun's position in the sky throughout the day as a guide. ... Some scientists believe some birds may also get some of their guidance from Earth's magnetic field. 🌿 #LivingHerbaly
“Does having type 1 diabetes stops you from doing anything?” - “no, on the contrary, I CAN do anything” 😉 (Obviously apart from being a pilot or an ambulance driver)
During #diabetesawarenessmonth I had the opportunity to share my type 1 diabetes experience with a room full of future doctors at Queen Mary University London today. .
It is so important for the medical students to learn and understand type 1 diabetes from a T1D patient’s perspective. I also demonstrated how my #medtronic640g insulin pump and #freestylelibre sensor work.
Thank you for having me @officialqmul 💙
Question to T1Ds here: “Does having T1D stops you from doing things? Or do you share the same view as me?
Day Fifteen: Diabetes Books I Love 📚
Now, I have only heard of a few diabetes books, and I haven’t read any of them! I know, I know. I just haven’t 🤷🏻♀️. One of the books I have heard of is Dr Bernstein’s ‘Diabetes Solution’. Personally, I have zero interest in reading it. It just isn’t for me. His methods work for many people, and if you’re one of them, then great!! If they don’t work for you, then that’s okay also!
Another one I’ve heard of is Sugar Surfing. I’ve been told that the methods in that book are almost exactly what I use myself, but I’ve never read the book, and don’t really know much about it.
Now, on to the books I actually have read! Not many. There was a book I was given when I was diagnosed called ‘Managing Diabetes In Children and Adolescents’ by Dr Fergus Cameron (a Paediatric endocrinologist at the Royal Children’s Hospital in Melbourne). That book was incredibly useful for me and my family, and gave rundowns on all aspects of diabetes. Highs, lows, insulin, food, and basically everything else. There is a new edition of the book available, and you can find PDF versions online if you’re interested in reading it.
There was also the cutest book called ‘Rufus Come Home’, which was a children’s book about a young boy diagnosed with diabetes, who is given a Rufus bear that helps him understand and come to terms with diabetes. It wasn’t overly informative, but it was about a kid with diabetes, great for children! And for those who don’t know, when children are diagnosed with type one (at least in the UK and Australia, not sure about other places) are gifted a young bear with diabetes, Rufus or Ruby. The bears have patches on their hands, arms, thighs, tummy, back and bottom, which children can use to inject the bear or ‘test’ their blood sugar. The bear is designed to give children a companion with diabetes and to help them come to terms with their diagnosis. Ruby’s dress says ‘beating diabetes with hugs and love,’. I put a picture of my Ruby on the fourth slide! Note: Initially I really hated my Ruby, as she seemed like a reminder of my diabetes, but I love her now!
So, those are the book I am aware of, any others I should check out??
Day 13 of the #happydiabeticchallenge Diabetes & Mental Health (a bit of a long post)
I really struggle talking about my mental health, I have never felt comfortable about talking about it. But it really is important to open up and talk, there is nothing to be ashamed or embarrassed about.
To sum it up Diabetes really hasn’t been brilliant on my mental health. The constant checks, injections, doctors appointments, prescription pick ups and then the people who have no clue about how you live.
Most days I shrug it off and make a joke about any comments, but my god there are days that all I want to do is cry and hide. “You can’t eat that”, “Are you stable today?”, “Watch out that will make you ill”, “Your control isn’t great is it”, “You aren’t fat, so you can’t be diabetic”, “Don’t worry it’s only a injection” and so so much more.
But on the way way brighter side of all this negativity 🌞. I am so much stronger than I was 10 years ago. I’m a completely different person, and I like who I am now. I’m happy, slightly weird (ok pretty weird), I eat everything in sight and bloody enjoy my food.
This photo is of me having a cheeky kiss with a Wallaby when I went solo around Australia 🇦🇺. If any of you lovely lovely people ever need a chat, please don’t hesitate. This community has really helped with the good and bad days 💕