It’s hard sometimes, but worth doing

September 14, 2015 at 7:29 AM (Uncategorized) (, , )

Celebrating their success is a great thing. You get to hear about how people you like and people you love got to do what they were meant to do and excel at it. You can laugh over their stories you can feel the pride of accomplishment. And if you are a person without children that pride and accomplishment has to go somewhere else so… If you have other relatives or friends who you are proud of who do amazing things if you take time to celebrate that you get positive vibes out of it yourself. I have two family members I’ve been watching with pride since they were children and I continue to get great joy out of watching them succeed.

But. In this world where we only put our best foot forward on social media , if you see someone successful you’re only getting that successful side to them, and you get a misleading picture that that’s the only part of them. And if you have disabilities and medical challenges and body issues, I’m not going to lie it’s very difficult to celebrate someone who appears at first glance to be perfect. Able-bodied good looking with the perfect career. You work to maintain that supportive stance with them and it gets harder. Until you’re open with each other usually on a one to one basis and you realize that that perfect person on Facebook isn’t. They’re struggles might not be your struggles but they do have them. they have cracks in the armor. There are bad days for them. Its not that you’re happy to see the bad days , it’s that being human  has to show through.  When you see some common ground it is easier to love the uncommon things they do.

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Posts going forward.

September 8, 2015 at 10:52 PM (Uncategorized)

Comments here will be closed on new posts going forward. Friend requests  can be sent  to  my facebook page  if you know my name. I encourage any and all who can to leave comments on Facebook as I will be sharing these posts to Facebook. I thank everybody for their dialogue over the past 10 years. See you over on Facebook.

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We are gathered here today…

September 8, 2015 at 8:42 PM (Uncategorized)

This last Saturday would have been a wedding anniversary for me. There was an odd moment of serendipity because I went to church Saturday. Before the service there was a wedding. The guests had all cleared out but the wedding party were still in the process of taking some pictures. The groom looked happy a little bouncy on his feet, and the bride was wearing a beautiful simple dress.

It took me back, but it also made me stop and think how lucky we are, each wedding we attend, each holiday each reunion , each christening. All those positive reaffirmations of who your family is and who your friends are. They may or may not live close by they may or may not be related by blood. But a lot of us have these times to come together and celebrate. I just couldn’t stop thinking how important these times are in general. Certainly I thought of my own wedding but I was really focused on the broader concept. Take time to celebrate whenever you can.

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Posts going forward.

September 8, 2015 at 10:49 AM (Uncategorized)

Comments here will be closed on new posts going forward. Friend requests  can be sent  true  my facebook page  if you know my name. And would like to leave a comment. I encourage any and all who can to leave comments on Facebook as I will be sharing these posts to Facebook. I thank everybody for their dialogue over the past 10 years. See you over on Facebook.

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In which doctors twist themselves into pretzels

September 8, 2015 at 10:34 AM (Lymphedema) (, )

First before I get into this, a caveat: I do not like using my  cerebral palsy is an excuse  for being the way that I am .  Because obviously there are plenty of weight normal people with cerebral palsy and plenty of weight and normal people  in wheelchairs. On to the main topic.

I have been trying to figure out how to wrangle an inconsistency in discussing Lymphedema.  It appears that if you are overweight, and you have some other factor in your medical past like radiation from cancer or an unknown as of yet predisposition to it, you are more likely to get Lymphedema. Therefore it seems to me that when someone begins to become overweight there are always discussions about high blood pressure, diabetes, cholesterol joint difficulties asthma, strokes and heart disease. You are told about them all the way along; you are warned that if you don’t get your act together these things could happen. Why isn’t Lymphedema part of those discussions in everyone’s wellness visit who shows signs of getting obese or is already there?

It is a down the road condition that affects more and more people. Those supporting and advocating for the Lymphedema Treatment Act say that it has many many more people living with Lymphedema then even are known. Of course there’s conflicting information some sources list it as a rare disease some sources list a really large number of folks with Lymphedema. Regardless I I want it talked about in every wellness visit of any person that might have it in their future just like diabetes just like high blood pressure just like strokes asthma or joint problems. It would take 2 additional seconds and it would least give us  name to put your problem should it ever come up. And even if people hear it and don’t make changes it would be caught sooner if people knew what it was. I I had swollen legs for years and thought it was merely my bad eating choices and nothing else that were causing my legs to swell, so I never discussed it with my current doctors and they never mentioned it.,

For reasons that are endlessly debatable in my family and my circle of friends, ranging from no willpower coming to a diagnosis of insulin resistance, to addiction, I have not been able to get my act together. I am very overweight. The doctors all give me the simple one line answer  that I have Lymphedema because I am fat. One even debated with me vigorously that it could have absolutely nothing to do with the fact that I had Hodgkins lymphoma a cancer of the lymph nodes back in the nineties. If I did not have radiation for the cancer that cancer in my lymph nodes could have had no effect on the processing of lymphatic fluid through the system 20 years later. Snark. They also have done one other thing. I’m ready to take mine, as far as heart disease, stroke, high blood pressure, and asthma, along with  joint problems because I was told to expect them. Oh and  type 2 diabetes if it ever shows up. I will then say to myself in my head,” well Flynn, what the heck did you expect given your eating habits of the last 40 years.?” Here’s the problem. I was never told about Lymphedema until 2012. I did not know what to expect. I did not know that once I got the Lymphedema losing weight became even more of a Sisyphean task pushing that boulder up a hill because the fluid retention makes you gain weight irrespective of what you eat and if you eat badly because of course you’re upset at your situation, it only gets worse. I would have liked to have known this was coming so then when it did I could say well what did you expect shrug and then move on and do what I could. I was not warned that this could happen to me simply because I was heavy.

The more information we have as patients the better outcomes we will have. It’s not our fault that Lymphedema is only discussed for 15 minutes during an 8 year long medical school career. It’s time to take it out of the disease closet dust it off and start talking about it.

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