Experiencing the Worse than You Syndrome Firsthand

Yesterday, I wrote about my long process of being given two new diagnoses of GERD and mild Gastroparesis. It took 5 months find answers, and the time between appointments was not fun at all.

So, during this time, I reached out to others in the gastro-world – just like so many in the diabetes online community have to find their way in their own new diagnoses. When I had my results from the gastric emptying scan, I joined a few groups on Facebook, looking for some feedback. It was then I felt so upset. I left one within 2 hours of joining because of the feedback I received.

I didn’t qualify to be in it.

One even said I didn’t have gastroparesis – everything was normal. That I was fine and overreacting.

I was looking for answers because I was new to this and confused. I didn’t have my own official diagnosis but I did have the test results (the radiology tech gave me the numbers after each scan). But rather than being met with support in their “support” group, I was met with comparisons of how others’ situations were so much worse (the “Worse than You” syndrome), and posts to basically say that my results weren’t a big deal. Which I knew they were only mild, but I wanted to connect with others who also had mild GP. To know what changes I needed to make, and what to expect. To find tips and tricks of things that helped them. To know if this was something that was pretty steady or a progressive condition. I knew I couldn’t have been the only one. But right off the bat, I had the feeling that I didn’t belong. That I didn’t “qualify” because I didn’t have a result of severe gastroparesis.

It was then, more than ever, that the anger of how some with Type 2 diabetes feel within the space of the Diabetes Online Community. Especially by some of those with Type 1 who can be not so nice. The ones who find it all too easy to point fingers and say, “Well, I have type 1 and so it’s not my fault and mine is so much more severe than yours,” or “You don’t know what it’s really like because all you have to do is modify and monitor your diet!” or “I wish I could just take a pill and be okay – you have no idea what it’s like to do all that it takes for us with real diabetes (like — seriously — what does that even mean!!??)” (And yes, I’ve really seen those statements being made.)

Similarly, in this group, because I didn’t have a very large amount left after 4 hours during my emptying scan, or because I wasn’t on a liquid diet or had any of the other equipment that some have to have when gastroparesis is very severe, I felt as if I didn’t have “real” gastroparesis. I have the equivalent of a Type 2 that only as to check their BG once a day and change their diet. But that doesn’t mean diabetes doesn’t affect their lives. They still do have that daily reminder. They do still have to go to a doctor for check-ups. They do still have to think of the worry of their condition possibly requiring more attention over time. And for most, it’s a completely new way of learning and getting used to different food and exercises.

There are many people with new diagnoses of Type 2 diabetes that have to go through the same guilt, frustration, and feeling of “what do I do now??” And now, having experienced a similar situation, I can personally see where so many would just rather not be in the mix.

And no, I’m not upset or, what is the term? Butthurt, I think is it? But it does make me concerned that we may be missing an opportunity to support and be there for some in the Type 2 community who simply just need to hear: “It’s okay, we’re here if you need us.”

While the urgency to know and learn about the two has two different pathways, both are changes in life – sometimes pretty big changes. Both can be traumatic at first. Both can be confusing and frustrating. But both deserve support and care. No one should feel like they need to “qualify” at some level to be in a general (name your condition) support group when they have real, legitimate questions or feelings of “what now?”

I’m glad to have known some in the DOC who also have GP that I could turn to and ask questions about their diagnosis and things they needed to change. Otherwise, I’d still probably be lost, especially since Dr. Google will have you losing.your.mind.

Parent Advice Needed

Okay, so this post is not about diabetes today. I know a lot of you guys out there are parents, so I’m hoping you can help me with something we have going on.

Two weeks ago, Kip had out-patient surgery to have ear tubes put in to hopefully relieve him of his recurring ear infections (he had 6 in 5 1/2 months). The surgery itself went fine, but it has changed him.

Before the surgery, he was a social kid. He didn’t care who he went to, if they wanted to hold him, that was okay. I never had a problem dropping him off at daycare outside of the first day. As long as his little playmate was there, he was cool as a cucumber and smiled back at me when I left. If we ever had to leave the room for any period of time (say, leave him in the play yard while I got ready in the morning), he would be okay.

Now? He’s so different. He bawls and pitches a fit when I leave him at daycare. He can’t stand for us to leave him in a play yard or his crib. This past weekend, we had gone out of town to a friend’s baby dedication and stopped of to get something to eat on the way home. Erik ordered him tea (I usually order water for him) and we gave it to him in his sippy cup. He didn’t go to sleep for hours! So, we thought to just let him go out on his own and put him in his crib and tried the “cry it out” method where you leave them for 5 minutes or so and go back to reassure them and check on them, and leave them for another 5 minutes. We’ve done it before (not exactly the cry it out, but more like play/whine yourself out method) to let him tire himself out as he wouldn’t cry, just whine some and play with his toys in his crib. It didn’t last any time. He coughs when he cries at times, so we didn’t think to rush right in. WRONG. His nerves were so on edge that he had actually vomited twice and commenced a third session just as we walked in the door. The look on his face was pure fear. I felt terrible. I handed him off to Erik to clean up while I cleaned up the room. Then, he started crying…. and stopped breathing. His little face started turning blue and we did everything we could think of to get him to breathe again. Scared the ever-living-shhh!!!## out of me. I blew in his face and he finally breathed in and cried harder.

Sidenote: Never again will I try that stupid “cry it out” method.

If he wakes up in the middle of the night, he won’t go back to sleep until he sees one of us. Sunday morning, he woke up at 5am and started crying. Scared we would have what happened the night before happen again since simply seeing us and us tucking him back in wouldn’t do, we did the big no-no and put him in the bed with us. Almost as soon as he laid down beside me, he curled up and went right back to sleep (but not before taking my pillow).

The only thing I can think that happened is he was upset when they took him from us to go back to the O.R.. I should have gone with my inside voice that was screaming at me to go with him and be there when he was put to sleep for the procedure, and to be there when they woke him up, but I didn’t. I didn’t think I was allowed since the option wasn’t given. He was screaming when I went down the hall to get him after the surgery. He was so upset, he was dry-heaving, even as we left. It’s like the whole thing flipped some sort of switch in his mind and now we can’t get him to unflip it.

I know that the “experts” are going to have a bazillion articles saying you have to let them learn. Leaving them alone isn’t going to hurt them. But this is my kid. I’m worried about what it will do to his mental state. I need to know techniques to get him comfortable with us leaving him without him going into a fit and getting scared. I’ve read the separation-anxiety articles, but most of those just seem to suggest they sort of gradually come to the realization that you’re not always there and get scared. This only happened after his surgery.

I need help. If you have any advice, please tell me.

Minimed CGM: Experiences and Opinions Needed

Hey you guys. Normally, I’m the one sharing stories and opinions of things. But this time, I’m asking for your stories and opinions.

Next week, I’m going to get a chance to try the Minimed Guardian CGM. I have heard various opinions here and there from different people regarding their system, but I want some feedback about the pros and cons of their system, and if you have or have had a Dexcom system, tell me the differences and pros/cons over the Guardian. You can either leave a comment or if you blog, write a post and link to it in a comment.




Ease of use

Ease of insertion

Transmitter / Receiver communication

Comfort during use

Sensor life


Your help is very much appreciated!!!