Dana - I am so sorry for your frustration and totally have felt what you are feeling. All of the things you have described, I have felt. My lowest point was standing at the pharmacy counter trying to get testing strips before my daughter went to Canada for a conference over the weekend. We have private insurance and Medicare to supplement. I don’t remember which insurance gave us the problem, but I was in tears at the counter. The poor staff, who know me well, didn’t know what to do. I finally said, “I’m just trying to make sure she has what she needs …” The feeling of helplessness and being overwhelmed by all the details is nothing just one of us experiences. Anytime you need to vent - vent away - we are here for you! Your child is blessed to have you … and know you will do whatever is necessary to make sure they have what they need. God bless, Lynda
My daughter was diagnosed at 17 and squeaked by at graduation. Diabetes gives them so many things to deal with … and even when they seem they’re great, we can’t entirely know what they are feeling. The days do come and go, but at the time … it seems pretty frustrating. You’re not alone!
I really do understand how you feel. My son was away at college and playing college football on a scholarship, which meant a lot to both of us for the accomplishment and realization of a dream he’d held since he was little and because it helped pay for school, which I could not do as a single parent with three kids. The fall before he was officially diagnosed he was going to “2 a day” practices, sick, vomiting during and after practice, sicker and sicker and his coach beating up on him for being a disappointment and not “working hard enough”. He quit before playing season because he felt so bad but we didn’t know why. Later the endo told us he was working out so hard that his pancreas was failing but the illness held at bay longer due to burning off glucose, but it was a losing battle. At Christmas I bought him an overcoat (anticipating a work wardrobe, which he didn’t have as a college student) that would be coming up after May graduation and it fit his 6;6" 300 lb. frame. He left it at my home and by the time I saw him again he had lost 55 pounds in 6 weeks. It was alarming. He was of course moody, by then seeing double and that first night home, after dinner, he was sick - vomiting and diarrhea all night and drinking gallons of fluids. He KNEW. We got him to the doctor and his blood sugar by February was over 700.
No matter how old your kid is, you worry about them and the older they are the less you can “control” and monitor them. Teenagers and even college students in their early 20’s have a different set of issues to deal with. EVERYTHING changes for them, they are scared and it comes at a time in life when there are so many big changes and events anyway. After he graduated (and thank God he managed to do that; I was so proud because his doctors wanted him to quit school and he was only less than 3 months from graduating. Turned out his professors were great when they found out what was going on) he came to live with us (I remarried) for a year so I could have him “back under my wing”, cook for him, get him well. We learned to live on the same diet he had to live with because I felt I couldn’t encourage him that he could do it if I couldn’t. Several endo’s told him he would never be the athletic person he used to be, couldn’t work out so hard, etc. His vision didn’t normalize for months. Despite all of that he got a job with a major corporation and kept his secret - he did not want anybody to know. He felt abnormal, sick, different. He also ended a serious relationship because he felt he was depending on her at a time that he felt unclear about his feelings with so much coming at him at once. It really was hard for both of them and we loved her too.
After one year, he got a better job and they transferred him out of state (we also were moved to another state for my husband’s job). Now I could no longer be there for him and had witnessed several hypoglycemic episodes that resulted in emergency room visits. Several times since he was diagnosed his glucose has been in the teens. Very dangerous. My low point came when he was found unconscious on a jogging trail and brought in to the ER by a park ranger as a “John Doe”. Eventually we did get a call in the middle of the night (at this time we had ended up living once more in the same city for a time) and went to the hospital. He remembered nothing of what happened the next day. He has also had an episode where he went too low at work - and basically “came out of the diabetes closet” when he uttered some profanities he has no memory of and attacked his boss, taking him to the ground! Again, emergency room, paramedics, etc. That event did cause some humor later and he knows now that he just simply cannot skip breakfast and also has to let people around him know what is going on. This disease has caused angst and pain for his whole family. It is NOT just the person who has it. As a mom you suffer too and neither of you can really understand what the other is experiencing.
One thing I have learned is to encourage him to be all he can be, to share the fact that he does have diabetes and put people he is with on the alert about what happens if they start to see he is grumpy or talking silly or something and get him to eat something and/or test. As much as you want to “hover” as young adults they need to learn to take care of themselves if they are ever to have a happy, normal existence for which we as parents hold them accountable. And you need support the Juvenile Diabetes Foundation has good support for all family members and you need to hear that things will be ok. One ER doc told me that it can take about 5 years for a young person to accept this and start to be truly healthy about it. Chronic illness changes things, but you can still have a great life. My son is 8 years into this, is doing much better, has a great, sweet woman in his life (wouldn’t you know God provides? She is a healthcare professional!) and has a great career. I do know a little tough love is necessary to truly help them through it. But it takes time.
You are so right!
I believe that the strength we have to deal with this comes only from God too. I do think, though, that if He doesn’t lift the burden He will definitely give us the strentgh to bear it. And it is truly possible to live a happy, healthy and productive life with Type 1.
Type1 or 13? I am guessing a bit of both!
Well said. God Bless.