Transplant or not, what to do?
Aafke
Posts: 1,219
I don't know if this is the place to ask this kind of questions, but I have to make a major decision in my life and I don't know how to decide.
When I was 13 moths old I was diagnosed with Diabetes Type I, (Insulin dependent type), From that age on, I had to inject myself every day with several insulin shots, but the disease has never been very manageable. I have what the doctors call a yo-yo effect, meaning going straight from Hypoglycemic to Hypoglycemic, and back. I've tried to get in under control with frequent (multiple times a day) glucose blood controls, an insulin pomp, and since a year and a half an glucose sensor. It doesn't work at all. Since I had it for such a long time with that yo-yo effect, I've lost my feeling for the hypo- and hyperglycemia. The effect is that I can get in a coma in a blink of an eye. One minute fully functional the next flat on my back, without any control over my own body. This was also manageable, when I was in an relation and my kids where around all the time. I was dependent of my ex-partner and my kids to deal with it while I was out, they knew when to call 911 and let the caretakers of the ambulance in if it came (once or twice a weak). I hate to be depending on them, it is NOT their responsibility, it's mine. But I can't feel it coming anymore, until it is to late. I HATE IT!!!!!!!!!!!!!! But now I'm divorced, and my kids spent half their time with their dad.That's why after my divorce I got the insulin pomp and sensor. These are risky moments for me. Because when I finally realize I'm in a hypoglycemic state, I've already lost the ability to act coherent. My Mind is the last thing that stops working, but my body is useless at these times. I know I have to find help, but can't act anymore. It's really frightening cause I know what is happening, and I know I can die of Hypoglycemia.
Last weak I was in the hospital for my usual control appointment, and my doctor, finally recognized my problem. When I was there having this conversation with my doctor I had a very low hypoglycemic attack. I went down in the middle of a sentence. My doctor, who knows me very well, didn't see it coming, and of course neither did I. It took me the normal time to get back on my feet, but my doctor was alarmed about the low levels of the glucose in my blood, and the time it took me to recover. He now fully understood how difficult it was for me to manage my disease, that it isn't possible despite the insulin pomp or sensor.
The only solution he could think of was to get a transplant of the Beta cells, which produce insulin. Those transplants have not a great success rate. Most Beta cells (60-80%) are rejected days after the transplantation, and you are most of the times still insulin dependent. Also do you have to take strong anti-rejection medication for the rest of your life, which makes the risk of other illnesses bigger BUT the Hypoglycemia is after transplantation most of the times gone...
This left me in doubt, I know I can't go on like this, but will this transplant help me get rid of the hypoglycemia? No one can predict that, will it all be a huge bustle without any result? How long does it take to recover from such a transplant? How long does it take for my body to adapt? Do I have an opportunity to experience a life where I can count on my body, or will it all end up as a big mistake, and a lot of pain for nothing? So many questions... Does any of you have any experience with such a transplant? Does any of you have a meaning or advice? I would really like to hear it...
When I was 13 moths old I was diagnosed with Diabetes Type I, (Insulin dependent type), From that age on, I had to inject myself every day with several insulin shots, but the disease has never been very manageable. I have what the doctors call a yo-yo effect, meaning going straight from Hypoglycemic to Hypoglycemic, and back. I've tried to get in under control with frequent (multiple times a day) glucose blood controls, an insulin pomp, and since a year and a half an glucose sensor. It doesn't work at all. Since I had it for such a long time with that yo-yo effect, I've lost my feeling for the hypo- and hyperglycemia. The effect is that I can get in a coma in a blink of an eye. One minute fully functional the next flat on my back, without any control over my own body. This was also manageable, when I was in an relation and my kids where around all the time. I was dependent of my ex-partner and my kids to deal with it while I was out, they knew when to call 911 and let the caretakers of the ambulance in if it came (once or twice a weak). I hate to be depending on them, it is NOT their responsibility, it's mine. But I can't feel it coming anymore, until it is to late. I HATE IT!!!!!!!!!!!!!! But now I'm divorced, and my kids spent half their time with their dad.That's why after my divorce I got the insulin pomp and sensor. These are risky moments for me. Because when I finally realize I'm in a hypoglycemic state, I've already lost the ability to act coherent. My Mind is the last thing that stops working, but my body is useless at these times. I know I have to find help, but can't act anymore. It's really frightening cause I know what is happening, and I know I can die of Hypoglycemia.
Last weak I was in the hospital for my usual control appointment, and my doctor, finally recognized my problem. When I was there having this conversation with my doctor I had a very low hypoglycemic attack. I went down in the middle of a sentence. My doctor, who knows me very well, didn't see it coming, and of course neither did I. It took me the normal time to get back on my feet, but my doctor was alarmed about the low levels of the glucose in my blood, and the time it took me to recover. He now fully understood how difficult it was for me to manage my disease, that it isn't possible despite the insulin pomp or sensor.
The only solution he could think of was to get a transplant of the Beta cells, which produce insulin. Those transplants have not a great success rate. Most Beta cells (60-80%) are rejected days after the transplantation, and you are most of the times still insulin dependent. Also do you have to take strong anti-rejection medication for the rest of your life, which makes the risk of other illnesses bigger BUT the Hypoglycemia is after transplantation most of the times gone...
This left me in doubt, I know I can't go on like this, but will this transplant help me get rid of the hypoglycemia? No one can predict that, will it all be a huge bustle without any result? How long does it take to recover from such a transplant? How long does it take for my body to adapt? Do I have an opportunity to experience a life where I can count on my body, or will it all end up as a big mistake, and a lot of pain for nothing? So many questions... Does any of you have any experience with such a transplant? Does any of you have a meaning or advice? I would really like to hear it...
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
Post edited by Aafke on
0
Comments
What I can do is send you many positive thoughts and prayers and a most sincere belief that whatever you decide will work out best for you.
Also, I wonder - and don't know much about it - but might a service animal help? I've read of many who are trained to sense onsets of various attacks before they set in.
Wishing you and your children well.
I wouldn't normally give my opinion on something like this, since it's such a personal thing that has to be decided between you and your doctor, but since you asked, and going off of what you've said, it's probably worth trying if it doesn't bring further risk to your life. The alternative seems to be doing nothing and carrying on as you are somehow, and that seems like a really shitty option. :( Is this transplant a threat to your life? Or is the worst case scenario just that it doesn't work and you have to take anti rejection meds forever? What kind of risks come with the rejection meds? Not sure about you and your docs, but if it were me I'd have to turn it into math.... weighing risk against possible benefits and choosing the decision that comes out on top.
Good luck with everything and i hope you find the answer!
So sorry life has left you with these decisions I hope you can pray your way to make the right one..
best wishes..
Also Hedonist thanks for your thoughts about a service animal, this thought has also crossed my mind a couple of times the past few years, I've talked about it with my family doctor and specialist, the family doctor advised me to look for protected living environment and ignored my request about the animal. I was so chocked about his proposal, that couldn't think clearly anymore, and just shut up. My independence means so much to me... I just want to live... I'M MORE THAN MY FUCKING DISEASE!!!! I can't live with someone constantly watching over my shoulder and judging every move I make.
My specialist told me it would take a long time to arrange such an animal, and we should first try the sensor, but next appointment I'll bring it up again....
PJ_Soul, a lot of the questions you asked about the transplant, and the consequences, I can't answer yet. The first step on this scary road is a consultation with the only specialist in my country who does this kind of procedures. I hope he can answer a lot of these questions. I don't overview all the benefits and risks not yet. Questions keep popping up and it frightens me that I can't figure out the answers yet.
But it helps to vent my concerns with people who aren't directly involved. It wasn't funny to walk around with it on my own. Thanks for all your advice, concerns, wishes and thoughts. It helps me a lot. Before I began this threat I was just frightened, but by expressing my thoughts and emotions it brought back my fighting spirits. I'M ALIVE, I'M MORE THAN THIS DISEASE AND I AM MINE!!!! Again thanks a lot for all your encouraging words and thoughts.
I have a long road ahead, and will keep you posted on whatever my decision will be...
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
Hope this helps..
At the end of the day you need to make your own choice bc you need to take responsibilty if you make a good or bad choice, if you listen to others you may regret it..
best wishes to you, I genuinely feel sorry for you but you can have relief various ways..
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
to start ask your dr. for a referal to the nearest tx hospital/center that still currently performs islet cell transplants. then go in for an evaluation. it's entirely possible your local Dr's knowledge of the tx center's exact protocols might be limited, unless he/she themself works/worked there. the hospital/center islet tx team can help answer your questons and decide if you're a candidate. believe me, you won't find many reassuring answers anywhere on-line. good luck!
sending you a pm
angels share laughter
*~*~*~*~*~*~*~*~
In my country, there's only one hospital which does these kind of procedures. And my specialist is making an appointment for an evaluation for me. I'm making a list of all the questions that pop up in my head. But the appointment will probable be after summer vacation, So I'll have to wait a couple of months, before I can get any answers from the specialists. The internet does indeed give a lot of misinformation, but it's the only information source I have right now. That's why for one reason posted this threat. To come in contact with people who had to make a similar choice, or do have an opinion on the subject. It's not nice to make such a possible life changing decision on your own.
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
I've been exploring the possibilities for an Diabetic Alert Dog (DAD). These animals are very expensive (training these kind of dogs cost a little less than $30.000), and although most service animals are (up until now, this will probably soon be history), covert by the health insurance, Alert Dogs aren't. So the costs of the training of this dog has to be covert. Because most of the medical bills in my country are paid by the health insurance. We aren't used to raise funds for this kind of thing. We're also not very willing to pay for such things because, that's why we have a great health insurance system, right?
So fund raising will be a bit of a difficulty...
Due to the poorly manageable diabetes and the ongoing financial crisis my country is going trough, I've lost my job. I'm in the process of starting up my own business, but this takes time. All my financial resources are going into that own business, so I don't have a $30.000 extra to pay for the dog myself, at the moment.
That's for the financial difficulties, but maybe that's not the main reason why I'm hesitating.
The main reason is that the dog is not a real cure, it's just consequence reduction. A DAD can worn me, if I get a Hypoglycemic or hyperglycemic attack, but the attacks itself will not be gone. I can just hope they can get more manageable. So I do still have an immense risk of all the diabetes complications, mentioned before, kidney failure, nerve damage, limb amputations, heart failures, and complete blindness. Not the things I'm especially looking forward to, to be honest.
Earlier this moth I had an appointment with the only specialist in my country, who does these kind of procedures. He told me I'm not only a candidate for a Isles transplant, but also a candidate for a whole pancreas transplant.
The the benefits and risks of those two procedures are the following:
Benefits Isles transplant
- possible cure of D type 1 insulin independence, 50% after double, due to the immuno-supressent
5 years, 10% after 10 years. meds.
- less interfering procedure, 5 days in hospital.
- several transplants possible again after a short time
- When the body doesn't except them, the body cleans them up itself.
- stopping with the immuno-supressent meds, is a possibility, without having a
second operation.
- decrease of diabetes complications
- No more hypo's
- No financials risks, cause it's financed out of the budget of the university.
Risks Isles Transplant
- More risk for infections and infectional types of cancer due to all the medicines I have to take after the transplant.
- Isn't a real cure for diabetes type 1
- huge change of being insulin dependence
Benefits pancreas transplant
- after 10 years 60 % is still insulin independent.
- bigger change for cure.
- Cure lasts longer
- decrease of diabetes complications.
- No more hypo's .
- No financials risks, cause it's financed out of the budget of the university.
Risks pancreas Transplant
- bigger risks for rejection or complications surgery.
- when rejected or during complications new operation has to be done to remove the transplanted pancreas.
- Stopping the immuno-supressent meds can't without an operation, to remove the pancreas.
- Risk for infections and infectional types of cancer double, due to the immuno-supressent meds.
At the moment I'm more seriously thinking about the benefits and risks of the DAD and transplants. I'm still not sure what to decide... All three options have great risks but also great benefits. At the moment I'm thinking of deciding to go for the pancreas transplant, because this has the biggest opportunity to have a long lasting cure. I would love to experience life without diabetes type 1. Although I'm not sure I'm faithful enough to believe that the transplant will be a success for me. In my life as a diabetic, I've heard to many times that they found ways to make life with the disease more manageable, I've been disappointed a few times to many, to get my hopes up, I guess.
Well when there will be new involvements I'll keep you posted.
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
I've no advice, though my husband and his siblings face sort of similar issues, and one has already had a kidney transplant.
As always, I wish you well in both body and mind, no matter the choice you make.
I'm really pissed off about how diabetes is still such a dangerous disease after centuries when there are probably already cures around that just don't get approved because every diabetic is a goldmine for the pharma industry. And there's still not enough information out there; my mother is a diabetic (as were my late father and grandmothers) and she actually talked to the staff in the grocery stores she shops regularly in, explained what a hypo was and that she hasn't gone mad if she ever comes in, runs straight to the next banana and inhales it. Now they actually provide her with something to sit down on when she needs it and she has their approval of going into the staff room if she needs to inject insulin and doesn't want to do it in the car, cramped behind the steering wheel. And that's type II.
I've also seen people getting hypos in the gym and the trainers thinking they were drunk because they smelled like alcohol. How about learning medical basics when you get your trainer's licenses? Grrr. Sorry, getting off my high horse now. I hope you can find info that helps you decide!
They love you so badly for sharing their sorrow, so pick up that guitar and go break a heart - Kris Kristofferson
My way becomes chairing my thoughts and feelings instead of keeping them all inside...
Also thanks to Sonja_S, for sharing her story around here. On your advise of searching forums for people who have experienced transplants. I have tried it, but couldn't find any. Maybe it's because the procedures are this experimental, and the results, are so different each time...
Or maybe it's because in the world of diabetes it not very common to share stories of failure. Only recently You have some stories of failure coming out. For a long time only success stories where widely spread. If you couldn't control you blood sugar the way doctors wanted them to be, it was simply your own fault. You didn't put enough effort in it. If you got complications you had entirely yourself to blame.
I think the biggest problem with this disease at the moment isn't the lack of cure. It's the lack of social-emotional guidance. Doctors only look at the state of the body, not the state of mind. If the state of the body is okay, the state of mins probable is great. If the state of the body isn't okay, you didn't put enough effort in to take care of yourself and they blame you for that. I don't think it's a real surprise that more than 90% of all adult diabetics doesn't except the fact that they have the disease. This has its's impact on the management of the disease, body and mind. A diabetic has three times more change of having a depression than a healthy human being. In a depression the diabetes gets more difficult to control... Nice downward spiral, isn't it? Very hard to break out on your own.
Also the reaction of other people, accusing diabetics of being drunk during a hypo, or judging the way they act or what they eat, (Mostly misinformed prejudice), if they tell about the diabetes. Is for many diabetics a reason to keep their disease silent and always pretend to be strong and independent. Nothing is more annoying than constantly being judged on something, you can't even except yourself.
So my pledge doesn't go out to just looking at the body of a person with diabetes. Aldo there is where the money is for the pharmaceutical industry. But far more money and attention should go out to the acceptance of the disease, by the diabetic self and their family. In my country psychologists are slowly discovering this area. But I think other forms of therapy should be included, like drama therapy, music therapy and art therapy. those forms of therapy has been proven to be much more effective in this kind of situations. Because they speak more directly to the emotional site of the brain, and can form a bond between the intellect and the emotions. Which influence behavioral changes, on a deeper level than just talking can do.
A body can only be healthy if the mind is as well and likewise...
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
As to what you said about doctors seeing only body and not mind...my father worked for City of Hope (a non-profit cancer research and treatment center) for many years. Their credo (to paraphrase) is "it doesn't matter if you cure the body if in the process you destroy the soul".
Amen to that.
I believe strongly in the paraphrased credo of the City of Hope, you quoted in your last threat. But that doesn't, in my opinion, have to be acknowledged only for cancer treatment... I do, strongly believe, it'll work for all diseases. I hope one day doctors and health insurances acknowledge this...
But hey, I'm not afraid to dream...
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
But lots of developments on the domestic front. being a single mom with a severe disease, life has never been easy. But during the holidays while my kids are with their dad, life is difficult. Because I suffer from severe hypo unawareness, I don't feel it when my blood sugars drop. When my kids are around they see it in my movement or incoherent way of speaking, they hand me some kind of sugar drink and we're up and running again. But while they are away, I do not know when my blood sugars go down, until, I lie flat with my back on the floor, unable, to move or speak any longer... The last thing which leaves me is my ability to think, and notice what happens in my surrounding.
All I can do is think what i should have done different to avoid these kind of situations, while in the same time i know, these kind of incidents are unavoidable....
The last two incidents happened two nights in a row. The first night i tried calling 911 myself, but unable to talk, they suspected me of making a drunk prank call, so they wouldn't help me....
The second night I was even further away, and wasn't able to move, or speak coherent. While the ambulance arrived, they slept me in the face numerous times, and told me i was stubborn, not willing to cooperate... I tried so hard... so bloody fucking hard... But it was impossible, so the paramedics slapped me once again, and decided to take me into the hospital.
While on the ER the docs, told me they had to inform child protection services, to take my kids away from me.... Because the burden of taking care of me is to big for an 15 year old and a 10 year old, I have to take care of them....
I don't want to be a burden to them, I want all the responsibility to take care of them in shared custody with my ex.
So instead of helping me, this trip has cost me my most priceless possession, my kids, who I love more then anything in the whole wide world. Last year when my kids were around no ambulance had to show up, but apparently, I give them to much responsibility, because of my hypo unawareness.
I feed them, I raise them, I love them, I take care of them, but apparently I'm a bad mom... I have many times wished my hypo unawareness was lifted of my shoulders, there would be some kind of way out of here. I don't want them to be responsible for my health, I wish i could do it on my own....
The biggest fight I've ever fought will be this one. I will not give up on my kids. But emotionally I'm running out, I can't give in, but I'm drowning.
I don't know what to do anymore...
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
My thoughts go out to you during this difficult time.
Are any public services available to you?
I'm so very sorry. You deserve better, and hope you get it.
Let me run into the rain . . . .to shine a human light today . . .
Best wishes to you. Take care.
I'm really surprised by the approach of the EMTs when they come to asses you. Do you wear a Medic Alert bracelet/necklace that tells them about your diabetic status? If not, I urge you to get one so that they will know immediately what the issue is. I understand some people even have medical info tattooed on their wrist or chest.
The "panic button" (known as a Life Line here) is a good suggestion. I believe there are even higher tech ones that will alert emergency services if you fall over, so you don't have to push the button yourself if you can't.
Wishing I could do more to help....
i'm livid at the ignorance of the ER doctor that reported you to children's protection services...for fucksake! do they call CPS on parents with seizure disorders? how about parents that pass out from anaphylactic shock? asthma attacks? low blood pressure? there's over 20 medical conditions that can lead a person to faint/pass out.
good f'n god, what was that ER Dr thinking? your kids are 10 and 15....it's not like they're going to run out to a road into coming traffic or torch your house when you're passed out
just because you have T1D with hypoglycemic unawareness does NOT mean you neglect your children! or that it puts an unbearable burden them! does CPS not realize the stress your kids would be under being separating from you? it'd only make your kids worry about you much more and not being able to check on you would be 1000x's more burdensome upon them
one time i came to in the ER (my blood sugar was 20) the Dr asked me if i was trying to commit suicide (as if as a single parent I would.) it floors me when even medical professionals think hypos are something we willingly choose to "do to ourselves." never mind the multitudes that don't understand or acknowledge type 1 an auto-immune disease that's not preventable
as for the 911 operator...that's inexcusable for them to assume you're drunk. that person needs to lose their job or else needs serious retraining. (the same thing happened to me 24 yrs ago, my mom had to call my local 911 from the other side of the US) call your non-emergency EMS office, talk to the head supervisor and tell them what you remember...obviously the operator wasn't asking you the correct (which should be mandatory) questions they have to ask anyone calling with an altered state of consciousness
call your endocrinologist and whichever D educators that works with them and tell them you need a patient advocate that is well versed in type 1 as well as hypoglycemic unawareness.
hopefully you can find somebody to advocate for you that'll see that you are a good parent that does take care of your kids. also gather all the records that show you've been seeking treatment and services to prevent HU... to no avail
Good luck and hang in there, Aafke
angels share laughter
*~*~*~*~*~*~*~*~
Aafke, I don't know if you're in the states; for some reason I thought you live in Europe? Not sure what services are in place where you are, but as prism mentioned advocates, is that or something similar available? (and if not, there fucking should be)
I'll try to answer all your questions and options one by one...
At first the question were i was living from Hedo... You were right I live in western Europe, in the Netherlands. At the moment we have a declining healthcare system. In the Netherlands you are forced to have a health insurance, and for a long time, all health was payed out of the budget of this health insurance, no matter what. But the raising life expectancy and the lower birthrate, have driven our medical bills truth the roof... Therefor the health insurance has become more and more expensive and less and less providing in our medical needs. Because we are not used to get a bill from the docs, their are at the moments no alternatives to get money for medical issues.
There comes the "panic button" into mind.... The panic button is available were I live, it can be captained by health insurance, about three years ago I have filed my first application, but it was denied, because I can only use it when I have been on my deepest blood sugar point and are already on my way up. The insurance reasoned if I was already on my way up, it would also be possible (and cheaper for them) to wait a while longer so I could undertake action myself....
But yesterday I have, filed another application, and hope with some medical letters, they will decide different this time... I hope we have the advantaged ones Oftenreading spoke of, where you don't have to push a button, but i hope to find out very soon.
About the medic alert bracelet... I wear one, I also never travel without my diabetes passport... The local first respondents central has all my medical records, so when a call is made from this address, they see on screen, that I'm a diabetic, so last Friday they asked if i was sure to have a hypo, because the operator judged my voice, to be drunk instead of having low blood sugars... When i tried to respond, the operator thought he was a better judge, and labeled me drunk, I had to call my ex, and he called 911 again, and they finally came.
But in such a hypo, panic kicks in, coherent thinking is far out of reach, because the brain is the most dependent of glucose of all the organs. It is a life and death situation, and unable to act I am completely dependent on the help of others, scared as hell to die. I've trained myself to unseal the infusion set of my insulin pump, to help myself to stop the blood sugars lower even more. But because of my physical immobility, I have deep scratches all over my arms and legs, of the attempts of getting the thing of... But hey, they make up for all the bruises I got from trying to reach the phone...
In these circumstances survival instincts take over, all non essential physical tasks, stop working, physical locomotion, becomes impossible, keeping my own body warm becomes impossible, as well as speaking coherent, or any other normal body function. 1 in 100 diabetics has a kind of epileptic attacks while in a hypo... Guess, what? ... Yep, I belong to that 1 %.
But enough self-pity, I filed my first complained with the EMR, lets see if it helps...
Prism, once again thank you for all your support and advice. Your ER story is so recognizable... Diabetics always get the blame for their hypo's... It's your own fault, if the blood sugars drop, you have to check them more often.... You must have done something wrong in the management of the disease,it's your own mistake you ended up here. If many hypo's occur the diabetic is to blame...
If you hear it long enough, you start believing it. At the moment I listening to "I am mine", and realize I've never felt me mine... I've always felt like a hostage of this bl**dy f*cking disease, always struggling to get control, and in the end always loosing the battle, which according to the docs and other health care professionals, i deserve, because I'm not trying hard enough, I can't get it under control.
Do i deserve, CPS, investigating the safety of my kids? I burden them with the worry of my safety and my health, which is uncommon on their age. So I suppose i do... Am I a bad mom? Hell, no! I do the best I can with my failing untrustworthy body. I will not let CPS, take away my kids without a fight, I might need my kids, but they sure need me too!!!
I've already spoken to the DVN (Dutch Diabetic Foundation) and they told me It's a standard proceeding in healthcare, to notice CPS if someone suffers from a questionable health. In the Netherlands , the last couple of years CPS has had numerous complaints on cases where they had not taken action and a child was hurt. So it might be a bad timing... But I also hope they see it just as a warning, and will not take my kids away.... Best thing is to cooperate, and show them my good intentions, i guess.
I'll keep you all posted...
"The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed".- Carl Jung.
"Art does not reproduce what we see; rather, it makes us see."- Paul Klee
i'm doing pretty good, superbean's still whizzing right along. thankfully my kids and grandkidlet are doing great as well
Aafke, looks like you're taking positive steps and working with the right attitude in dealing with CPS....so hopefully they'll quickly realize they have no reason to take away your kids and thus leave your family alone. as strong as you are and frustrating as the situation is...i wish you much good luck and positive energy that things turn out just fine!
my endo and staff have gotten much better the past few years in understanding that blaming type 1's for having fluctuating high & low numbers despite the patient's best efforts, is not only counterproductive...it's also unjust.
unfortunately few other Dr.s (for instance ER or primary care) and other healthcare peeps have caught on.
this is awesome: http://diatribe.org/issues/68/adams-corner
it's so spot on! i've bookmarked it on my phone...just in case I need to show it to the next doc, nurse, healthcare or insurance co. worker who starts to spew a typical ration of blame & bullshit those with T1 so often have had drilled into our heads
angels share laughter
*~*~*~*~*~*~*~*~