Hallucinating with diabetes
07/05/2021 1:28 p.m.
Good morning, I am Daniela, Rodrigo's mother who has just been diagnosed last May.I just found in forum, maybe it's not the site, not the place to say these, but I need to shout the world.
Right now I do not understand if we live in the 21st century or in the eighteenth ... the management of this condition, I refuse to call it disease, it is hallucinating me ... as you should prick insulin 6 to 9 times a day ...Or live attached to an insulin bomb for the rest of your life ... and still not control your glucose at 100 percent. Not being able to eat anything without knowing how it will influence you in glucose and calculate the exercise you are going to doIn case it's a lot or little ...
And where is improvisation ... ??For God's that the vast majority are children.It doesn't seem like a way of life, it seems to me a conviction.I had never felt so frustrated and disenchanted with medicine.The only thing that repeats me every day is that there is no other option, that we have to get used to it.Get used to what ... ??To live pending glucose every 5 minutes day and night ???
They have been able to create 5 different vaccines for the Coronavirus in less than 1 year and for this what is older that you have to live tied for insulin, needles, food and sport calculations ???
And if at least it were a minority disease I would understand something ... but we talked about millions of people with this ...
Forgive the parrafada, I am overwhelmed, exhausted and I just started this fight that my son is left ahead.It seems to me a titanic task ... I don't know how we will continue with our lives after this.
07/05/2021 1:28 p.m.
Mamá de Rodrigo 4 años. Diabetes tipo 1 desde mayo de 2021.
Alucinando con la gestión de esta enfermedad.
I totally agree with you.The business that pharmaceutics have with us is incredible.That is why I have created this Congress, so that among patients we help improve our quality of life and depend as little as possible on their products.I hope you like it.
Link
07/05/2021 1:42 p.m.
@Daniela79 Yes, it is quite frustrating.I just received the magazine "Among all" of the Association of Diabetes of Madrid and comes the historic of Progreso.The article is called "a century of advances", begins in 1921 with the discovery of insulin and ends in 2016 with the infusion system by closed circuit pump.
Quiet and patience, it is achieved and in two months everything will be "normal" within what diabetes is.Children normalize it quickly, we are the adults who traumatize and see the most black future.
07/05/2021 4:26 p.m.
Lada enero 2015.
Uso Toujeo y Novorapid.
@Daniela79, if you get a good adjustment of the slow one, so many corrections are not needed, and you are gradually assuming it, there is no other.
It is true that there are now means to achieve good control and that guarantees them to get rid of many years, and better treatments will come, but at first it seems impossible, and that the insulins are now much more flat and without rigid food schedules.When I started with my daughter 27 years ago, it was a real madness, and also nobody understood, except the family.
Little by little ... and with patience.
07/05/2021 7:02 p.m.
Hija de 35 años , diabética desde los 5. Glico: normalmente de 6 , pero 6,7 la última ( 6,2 marcaba el Free)
Fiasp: 4- 4- 3 Toujeo: 20
100 years and we continue with the same enslaving treatment.Endogenous insulin injection.
07/05/2021 8:16 p.m.
En 1922 descubrieron la insulina, en 1930 la insulina lenta. ¿Que c*** han hecho desde entonces?
@regina, they didn't understand it 27 years ago and now either.No one understands us, well those who have also disease, yes.Although there are also those who say that we can make normal life still suffering from it, that does not happen to me, I do not make normal life and if the treatment continues, I know that I will never do it.
Anyway, @daniela79, after a while you will accept it, we all do it so if you need to vent then do it.Children are done with everything, encouragement !!
07/05/2021 9:51 p.m.
I see you a little negative, that nobody understands us, I don't think it is what almost everyone we are here, there are fathers and mothers with children with D1, that grandparents do not understand those grandchildren and fathers?In the case of children or adolescents who are now 30 or more years old, does anyone understand them?Nobody has understood them?In the case of those who have D1, D2 or another, our wife or children do not understand us?I'm sorry for the people who live this disease in solitude, but there are many who have a family that gets dirty for them and suffers from the disease as if it were their own, it is what I think and ask for apologies if someone annoying
07/05/2021 11:57 p.m.
DM3c desde 2018; hb 6 % (feb.. 2022) (tresiba+fiasp+metformina)
It is complicated but not impossible, changes the mentality and getting used little by little, it is difficult to know but we are going that if you can, go ahead!
07/06/2021 4:04 a.m.
canal:https://youtube.com/user/tumedicodecabecera?sub_confirmation=1
Yes, it is a whore, but although it is seen that you are frustrated, time will pass and you will see it differently.Cheer up.
07/06/2021 2:59 p.m.
@Daniela79 I think exactly the same as you ... I have felt very identified with your comment.We cannot understand this tedious management either.
Just the other day in the consultation, his endocrine tells us that if he is going to do a lot??I may take you and run all afternoon like sitting down to play kitchens ... He is 5 years old no 35 lady ...
I would love to see his pediatrician explain to the girl that he cannot leave anything on the XK dish we have put the insulin corresponding to that amount of food hehe ... or wake her up at night to eat ... a week was sent toHis house to see how the lady was composed ...
We also feel lost and without spontaneity ... Nothing is natural or flowing ... I hope it will happen ...
In short, we only have the palette in these parts and ask that our little ones get used to this life that we had not dreamed for them ...
Courage and strength Daniela ... We are many surviving like this.I say surviving because I feel what we are doing now.There are bad days but also less bad days every time.And in the end they are champions that protest little and have admitted this before their parents.They show us every day how strong and brave they are although some only see them as a poor diabetic child we know they are authentic fighters.
We should not look at the past, I know, it only hurts ... I no longer imagine my life without being aware of its glucose, but I miss that old normality ... without alarms, without counting and calculating, without punctures ... thereality that we live should be prohibited ... but that of daughter is life.
For anything do not hesitate to write me.
ISI
07/07/2021 1:39 a.m.
Your refusions comment on them and I almost lay me that it was not very empathic a few months ago the difference with otradThe moment is laughed instead of so much Congress prior payment
07/07/2021 3:24 p.m.
DM3c desde 2018; hb 6 % (feb.. 2022) (tresiba+fiasp+metformina)
@Daniela79 The beginning of a chronic disease is always difficult and complicated but getting to control diabetes is not something impossible.You'll see how that control will get little by little.Cheer up!The most important thing: look for good professionals who know how to guide you well, without discouraging you.
07/07/2021 3:52 p.m.
DM1 desde 1982: Toujeo+Novorapid
Hi Daniela,
I will try to explain my experience, to see if it helps you a little, even though I think that when the rebut is so recent, it is like a duel to happen, emotionally you are not well, and it is difficult for you to encourage you from outside, you need to follow your own process.
My son is 10 years old and debuted on January 30 of this year, not yet 6 months ago ...
The first days and weeks were the worst of my life, I felt all day like you, super sad and angry with life for having chosen us (especially to him) to have to go through something like that, and cried through the corners thinking aboutAll the inconveniences that the disease would mean in the short, medium and long term.
But for the children we do whatever we need and take the strength where there are no, so I was gradually adapting to this reality, which is inevitable, on the other hand, and trying to manage diabetes as well as possible, reading a lot, reading a lot,and learning and informing me to the fullest.We would change for them, but we cannot, so the only thing we have left is to help them to manage their diabetes now, and teach them to do so in the best way in the future.
It also helped me see my son's attitude.He has never sorry, he does not complain too much (although he never feels like, obviously) and never ashamed of having diabetes, nor hides, and being able to see that he continues with his life of always despite diabetes, diabetes,It also helps.Seeing it like this day after day you realize that the way we live the parents and they are not the same.We care, we judge, value, anticipate, suffer ... they live more day to day and do not think so much about what is happening to them, or in the future that awaits them.
It is true what you say that there is no place for improvisation at meals, and for me the most difficult is still to find the midpoint between him to continue with his normality, being able to perceive his life like any child of his age, butat the same time control the disease properly.The balance between not being an excessively perfectionist but controlling the glycemia daily, is not easy, but it is true that, after the first 2-3 months, it looks a little better.
And life continues, although now you seem that you do not care or you can think of anything else.In my case, I have 2 more daughters, 12 and 6 years old, a husband and a job of responsibility, and I have to continue with all this, so there is no other to take the bull for the horns and collaborate with him to everythingIt goes as well as possible, with much love and love even though we are still saying and we are the first ones that we need comfort.
Give yourself space to vent, it is necessary, and you will see how you are gradually integrating it into daily life, as one more habit (however heavy and more complicated), and he will also get used to gradually and grow with it.
And finally, take care of groups like this, enter RRSS and you will realize the number of people who live daily with T1 diabetes, and learn a lot reading other people's experiences.
Much encouragement and for it!
Nuka
07/09/2021 12:13 p.m.
Hijo de 10 años con DT1 desde enero de 2021
Humalog y Abasaglar (noche)
Primera HbA1c tras el debut de 5,8% (Mayo 2021)
Freestyle Libre 2
anaisabel said:
@regina, did not understand 27 years ago and now either.No one understands us, well those who have also disease, yes.Although there are also those who say that we can make normal life still suffering from it, that does not happen to me, I do not make normal life and if the treatment continues, I know that I will never do it.
Anyway, @daniela79, after a while you will accept it, we all do it so if you need to vent then do it.Children are done with everything, encouragement !!
Hi @regina, totally agree, so normal we wanted to be and do everything as the others, that this is how we wanted to hear from our mouths that we are totally the same and does not affect diabetes and so we are ,,Without aid without investigation and we continue to say that we are wonderful ,,, a greetbetter possible
07/11/2021 10:48 a.m.
Daniela, I can only tell you that I understand you perfectly, everything you have expressed is the same as I would have expressed.It is a very damn and slave disease and for the moment the only solution is to adapt.We have been with this for 9 months and as they say there are good and bad days.And it is true that children take it much better than parents.I see a lot of misunderstanding out of this world, I see it as a silent disease, apparently our children continue to make a normal life, they go to school, go out, enter, play….But nothing is the same as before, in my case every time I see someone in my surroundings (and I do not include the family) they ask my daughter "Are you already better?", That phrase revolts me insideBecause I don't know what to say, better what ???.Anyway, I can only tell you that the duel must be passed and that you have to have hope that one day the cure will come out.Much encouragement and do not have any repair in venting here because the vast majority have or we are experiencing your same feelings.A hug
07/11/2021 11:35 a.m.
One day in the pharmacy, while I waited with those thoughts, when paying, I pass a flash thought for my head.I had just left 2.3 of the bomb deposits (a week, that is, 9.2 per month, which does not sound much) but I thought below, ...... If we are, only in Spain, andTo put a round figure, 50 million diabetics .... 460 million admitted to the month ........ Are they really wanting to cure a disease, in which you do not die from one day to another, as with theCovid (important difference, the dead tell, or rather, the speed with which you die for something; because AIDS was a great disease in their day but looks at the years that have passed and vaccine does not have. Only life treatmentsThat they do not let you die, so that you continue paying them, because you have another comparison.Little by little.in which for life are you going to be paying ????And that only with insulin.Imagine if you had to pay the strips (at an average of € 1.1 each) to make analysis, or the sensors (€ 59) ......... add and follow and take conclusions.Salu2
07/11/2021 8:49 p.m.
anibal pellino said:
hello would recommend what the book of Dr Bernstein "Diabetes Solution", the punctures and the injections of insulins at the beginning cost but then they are part of the life and assume as they are assumed asSomething natural, and thank God they exist but we would die.This book will guide you to normalize blood sugar levels.It is very good, it is not a magical cure or anything like that, it demands a lot of work ... but it gives results.If you want it.If you have it translated, I am interested
07/12/2021 11:07 a.m.
Hello!!The truth, do you want to know the truth of all this?My diabetic brother, my father in peace was diabetic, and now at the age of 31 ... almost 2 years diagnosed because the pure truth ... is torture.Luckily I could live it from the outside and nearby, my brother with a diabetic coma ... my bad potato of circulation ... pffff and now I have to live it.Everything is real problems, there will be people who take it well but the personality is very important to do it well, and mine ... my lifestyle before this "and that's why I got out" because it was all I wanted when I wanted.It's very hard, I don't want to imagine my father and my brother with 9 or 10 years living this.Now, we are in 2021 and I have confidence of technology, I have confidence in science ... of its professionals every day researching to heal us.Take it well, carrying it the best you can, I am in the phase to take care of myself a bit ... then throw everything for the board and take care of myself.If not, I could not live like this taking care of every minute of my body ... I prefer to die slowly than to live in control.I am like that, they will tell me everything to do this but now it is what I need.If I shatter clearly, I carry the sensor but I can't take care of myself 100%.I am almost praying for one day of these to have the news of my life, there is a cure.Greetings and strong.Take care of yourself as possible.
07/13/2021 11:30 p.m.
Tengo diabetes desde el martes 9 de junio del 2020. Tipo 1.
Llevo el FREESTYLE Desde el 30 de Julio. Todo muy bien, con subidas y bajadas pero aprendiendo a controlarme más cada día. Gracias por el foro.
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Well, imagine when they debut one year old babies as my daughter ... at least your son speaks.
Yes, it is very hard, and we are millions of people, but we do not organize to liar it brown and put the batteries.It is not normal that there are no 100% reliable sensors for babies, they are huge for them, and they have so many rises and descents that are easily broken.Needless to say when they take off with the sweat of the diaper.
Nor is it normal that they have not investigated anymore for their cure and certain companies are foding at our expense.
I am with you, this is not life, and you have to show it.People think this are two punctures and that's it.No. It is very hard.Especially for parents, because they manage it better or I hope.
A constant struggle for survival.That is the story of my life since my daughter debuted.The lifestyle modifies you, you cannot improvise how you say, you always have to have everything on top.It is exhausting.And it is not being pessimistic, it is being realistic.It goes out, and every day is an achievement.What was previously important, is no longer.There are many very hard diseases and, unfortunately, this is one of them.
07/14/2021 12:03 a.m.
I can't imagine how mother you will be happening, I started at 7 years, 38 ago and it was more complicated.
I remember that my meals were vegetables, fish, meat and integral bread.Hypos I don't even know if we did not have to look.
In a very short time I was me alone, I started to prick the insulin.
The only help was the association of diabetics, because there was nothing else to what my parents could resort.
I say, I suppose that otherwise but you are having a bad time.
You just have to try resignation, there is no other.
Make your child see it normally and not get pissed off or cry before your BB.
I have the image of my parents suffering.
Get your diabetes, your good health depends on the first years.
Do not despair of you will get it
A hug
07/14/2021 7:55 a.m.