Confused, Frustrated, and Thinking This is Tough

So I’m 55. Aging faster than my husband – he’s running marathons.

At this time, I’m not able to see well enough to read a newspaper through a magnifying glass. Don’t have the stamina to ride the bike 5 miles, and only have about four hours of work per week, but can’t go looking for more work if I can’t see!

In the greater scheme of things, I have a lot of blessings – husband that cares for me and carries the load I can’t, kids that are great to me (son rescued me on a kayaking trip from icy water and was a total gentlrman about it), and some work and club activities that I totally enjoy.

Doc says that he thinks I’m doing as well as any of his 400 diabetic patients with following a good diet, keeping track of blood glucose and dosing the insulin. If I were abe to be more active, it might help some, but it’s not a guarantee that I would have any better control – and even if we got better control, there’s no guarantee that my eyesight would be any less at risk. He says he has patients with far less control that don’t develop any complications… and that I’m getting the best treatment available.

Some of the audiobooks I have been “reading” lately include historical novels. World Without End" by Ken Follett and “Last Days of Dog Town” by Anita Daimont both come to mind. While these stories are set about 400 years apart and more, the women doing the nursing care have the same reflection on the physicians whose “remedies” included bleeding and poisons, well the women wondered if the physicians didn’t do more harm than good. AND the biggest block to finding good solutions was the arogance of the physicians – they just didn’t want to hear the complaints or challenges from the nurses or the patients.

Anyway, I’ve been thinking that we may have moved away from bleeding and poulices made of manure… but we are bankrupting ourselves on remedies that are not well understood. How many of the pills and techniques have I been given on the basis of “let’s try this and see if it works”. One such prescription was $2,000 per month! luckily, the doc had some samples and it didn’t do me any good. (in fact, it had the opposite of the desired effect). Pasteur was a quack – how many other quacks are laboring on the fringes with approaches that could revolutionize the lives of thousands of people like me, but are on the fringes because their ideas are not in keeping with today’s orthodoxy?

So what am I to do? I guess my strategy of doing the best I can with the information I have is part of it – challenging the status quo in the medical profession whenever it seems appropriate (I’m thinking of starting a movement to end the medical mindset that diabetes is a lifestyle disease – and to stop calling people “non-compliant patients” – and start calling them “disatisfied clients”. AND I will advocate for better remedies – better tools (can anyboty with retinopathy read those meters with the grey numbers on the grey background!!!)

Ah well, just a rant after visiting the doc – good numbers – keep doing what you’re doing – may not do anything to get your eyesight back on track.

I am so sorry you are having such a hard time with the medical community, sometimes they too can be jerks. At the point of sounding like a record “is there anyone else you can see as far as your diabetes and health concerns go” Yes, our system, in the US stinks right now, and it doesn’t look to be getting any better…so we have to be our own advocates. It sounds like you have a pretty good support in your dh…maybe the two of you could search the net and find out your on information. I’m rather new to being my own advocate, but I have been compiling much information that I double check before showing it to my doc…and then we talk. Last summer she had me on Avandia, and I gained 29 lbs…not good for a woman who at that time weighed well over 200…she didn’t believe me that it was the med, until I had enough info about it that she had to believe it. Because docs only get a minute amount of time on such diseases as diabetes, we probably know more than they do, unless you are seeing someone who is specialist in diabetes.

Don’t give up, as they have told me here a million times, we are here for each other, what one has done, there is another who has gone through the same thing…we’re here to listen and help with whatever you need…or at least offer our support.

Dear Cathy
Thanks for your words of encouragement… The key issues are"
1- Scientists are some of the most dogma driven people in our society today – those who are willing to challenge the currently held way of thinking are often driven out of their profession.
2- medical professionals are also subject to this dynamic as they seek answers for their patients. The best-informed, most caring, most creative in their field are still heavily influenced by “standards of care” that may or may not be well-founded. History is filled with people who were found to be correct long after their careers and lives were ruined byt the current members of the profession (ever wonder about how doctors came to know that hand-washing saved lives? Look for the story of Ignaz Semmelweis)
3-Those who use the scientifc method do not have a clear path to the truth. The design of the experiement, the assumptions used, the data collection method, and the statistical analysis can all stand in the way of understanding what’s going on. I worked in plant physiology research 30 years ago. My professor had been searching for the interaction of two hormones for over 20 years. My first question – :Why are you using higher concentrations than occur in nature (obvious to me!) led to the breakthrough that he had been looking for. THIS HAPPENS ALL THE TIME – scientists spend an entire career looking for something that’s right in front of them and they can’t see it. The people designing treatments for diabetes are no different! My frustration is that I’m sure they are on the wrong track, I simply lack the opportunity to do something about it.
4- it is standard practice in medical profession to have a general characterization of what’s wrong with a patient – they rarely fine-tune the diagnosis past - type 2 diabetes. Then they say, well, lets see if this works – it works for a lot of people. A month later, you are out a hundred bucks or more, feeling worse, gained weight, frustrated, lost wrk time, and they have NO IDEA why it didn’t work for you. So they move on to the next prescription that may or may not do any better.

Some of the medical people I’m dealing with are caring and want to be helpful – they just have limited information, and they don’t know how to help. Others think they have all the answers and are sure if I would just do this thing or that thing different that I would be well (I have multiple genetic issues and severe sleep issues that preceded my weight issue)… and I’m frankly not hopeful that the practice of medicine will evolve in time to find solutions to my challenges.

Again, I’m very lucky in so many ways – can’t imagine what my life would be like without my great support system. BUT am worried that I will become even more dependent if the eyesight thingy can’t be fixed.