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    « Rocking Around The World | Main | The Time Thief »

    I can't do it on my own

    You know that cheesy mantra about there being "no 'I' in 'team'"?

    Well when it comes to my diabetes care team, sometimes I feel like it's much more of a diabetes care tiim. I feel like the 'I' and I'm doing it all myself.

    On the surface at least, my last clinic visit, on July 31st, wasn't so bad. My A1c was unchanged and I got to spend a good 45 minutes discussing various issues with my diabetes consultant - who is essentially a very good man. But that is where it started to get not so good.

    The issues are multiple. I hadn't taken along any recent blood glucose records, which meant that my consultant was working somewhat in the dark. Obviously I fully accept that the responsibility for providing my records lies with me, but I have my reasons. Holidays was one of them. Not having access to Carelink owing to the fact that I don't have a copy of Windows to run on my Mac, certainly don't want to fork out for a copy of Windows (else why would I use a Mac?) and wouldn't want to use IE7 even if I had Windows. Carelink would be by far the simplest solution for me to log data and share it with my care team right now, but Medtronic have made that impossible for me. Yeah, I'm damn mad about this. My chronic medical conditions dictate or influence enough of my day to day lifestyle choices. I won't have my medical conditions dictate what kind of computer hardware and software I should use.

    I digress.

    The real downside to the appointment came when I finally admitted that yes, things are not good. That yes, I'm still experiencing a high number of severe hypos at night, some involving seizures. My consultant was pretty appalled. Not at me, and my lack of control, more that I hadn't asked for help.

    His words were "I can't let you keep having this number of serious hypos."

    So why have I not asked for help?

    Well, in one way I have. I've be fighting for over a year now to get support to get some financial assistance for CGM sensors. I know this sounds like a cop out to the very many people who aren't lucky enough to have access to CGM at all. But whilst there are very few patterns in my control at present, the consistent pattern is that things are far worse when I'm not using a sensor. I do have enough records to prove that. Various changes in my personal circumstances, including being unable to get sensors at US prices any more, mean that I've not been using them as regularly. But despite the fact that my clinic have assisted some people to get financial support, I'm repeatedly met with a blanket "no." And my PCT won't even consider a direct application without consultant backing.

    I digress again.

    On why I haven't asked directly for more practical help then: because it is so damn difficult. Especially in my line of work.

    Take this example: I call the specialist nurse with a problem. She'll be busy with a patient, or an education course or just generally doing her job. So I leave a number and request a call back. The call back comes a little later by which time I'm elbow deep in a surgical extraction of a wisdom tooth, or halfway through delivering an inferior dental nerve block injection or just generally doing my job. So we miss each other.

    And when this has happened multiple times, then as hard as carrying on without support is, it is easier than keep struggling to work the system. I know I could get more support, but it seems like too much hard work to be truly worthwhile.

    Towards the end of my appointment came the real crunch. My consultant insisted that I must come in again in 3 months. He seemed receptive to the fact that allowing 6 months to elapse between appointments adds to my sense of abandonment. But when he tried to request an October appointment he was told that the October "pump clinic" was "full". So the next available is January.

    "Don't worry" he assures me. "We'll sort something out.  We just have to fiddle the system and you'll get an October appointment sent out to you shortly.You need to be more supported professionally. "

    So why, three weeks later, am I sitting here without an appointment? Why do I feel more abandoned than ever?

    I can't do this on my own, but I can't find a way to get the professional support I need either. I don't have the energy it seems to require of me.

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    I totally understand the feeling of not having the energy it seems to require.

    For one, it is hard to admit, even to ourselves, that we are not doing as well as we think we can.

    For two, it DOES take a lot of energy! Many times more than we think we have available.

    I don't have a great solution, or even any real words of wisdom. Just wanted to let you know that I understand some of what you are fighting with.

    Take care!

    I also have no great solution but I do think that the effort IS worth your energy and time. What about taking a sick day and using that day to make your calls (and get the call backs) -
    Please ask for the help, you are certainly worth it.

    Thanks Scott.

    I feel miserable tonight because I'm not well and I've lost my voice. In that context, I'm feeling even more frustrated that it seems to have been put back into my hands to chase up a follow up appointment and navigate the maze of the hospital telephone system.

    I can't help but feel I get "told off" for letting the problems get so bad (and I feel frustrated and upset by that anyway, of course I do) but I still get offered no real support.

    I knew people within the OC would get that though. You guys always do! And right now just understanding is enough. So thank you.

    Cesnh - thank you too.

    I know you are right about it being worth it, but I still feel trapped in a cycle. Ironically I was off work sick today, but since I've almost completely lost my voice, telephone calls were not on the agenda.

    I think I ought to pursue some email support though - it has just occurred to me that that ought to be possible!

    I don't know if this would help, but have you looked at SugarStats.com? It's web-based so it should work on Safari.

    And now you can Twitter your Bgs to SugarStats, so collecting data during the day should be a little easier.

    I know it's a REAL PAIN, but can you check your basal rates? If you can get those right, at least one thing is (somewhat) predictable.

    Sorry you're struggling with this, it's such a tough disease.

    Bernard, I will have another look at SugarStats. I'd looked at it a couple of months back but sort of forgotten, so thanks for reminding me. The thing about Carelink is that it can use data directly from CGM when I'm using it, and other pump stats at all times. This is a big time saver. I've also got Kevin's excellent Excel spreadsheet, but sometimes the manual input - and the preparation of data to be suitable to present at a clinic visit rather than just for me to look at - gets too much.

    As for my basal rates - I have checked them all fairly recently. This is the thing, there is no pattern to a lot of my problems. No association with exercise, illness etc. I may be being a little over tight with targets, but my A1c is in the 6s, not the 5s!

    I think it really comes down to having multiple endocrine deficiencies. No matter how closely we try to mimic the body with hormone replacement, it just seems to be unpredictable.

    Yeah... it's a tough disease alright.

    It's not every day that I'm thankful for the health system that we have in the U.S., but when I hear some of your woes, I'm thankful that those of us with (good) insurance in the U.S. can usually get what we need (CGM coverage aside, but at least it sounds like our sensors are cheaper!). Hell, I'll admit that I got a pump out of my insurance company essentially because I wanted it--they didn't even ask to see an A1C, and my latest at the time (6.9) probably would not have warranted a pump.

    And also, here I am trying to avoid having to go to the endo every 3 months because I don't like feeling like I'm "under surveillance"...and you're trying to get an appt. every 3 months!

    Hang in there, be assertive, and don't give up!

    Caro........I am a Mac Guy and use something BETTER than SugarStats.
    It is:
    www.nesfield.co.uk/diabeteslogbookx
    This is made "free" to those w/T1DM and was done out of the generosity of the Developer whose young son developed Diabetes and so wanted a good way to input data.
    The configuration that you are able to perform is great and there exists a tab where you can click and send all the data to your Healthcare people.
    I hope that this helps you. I think that it will.

    This is my third try at leaving a comment! All I can say is that I am in the same boat. OK, perhaps a similar boat! If you hit upon a solution, please do clue me in!

    Persons with diabetes should keep their blood sugar at a healthy level to prevent or slow down diabetes problems. Ask your doctor or diabetes teacher what a healthy blood sugar level is for you. Your blood sugar can get too high if you eat too much. If your blood sugar becomes too high, you can get sick. Your blood sugar can also go too high if you do not take the right amount of diabetes medicine. Diabetes Symptom at https://diets-diabetes.blogspot.com

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