Thank you! I actually have been on for a while but don’t post much. It took me a while to learn things lol. I have always felt comfortable and think it is a fantastic place for support and information. In the last couple of years the “care-taking” of all these issues began to get overwhelming. Including doctors, insurance, supplies, device changes etc. It really kinda sent me overboard when I went on the 670G system. It totally fried my brain and I lost so much confidence which has never happened even when I was first diagnosed in 1971! I got very worried. It really messed me up. Anyway, once I got back on Dexcom and Tandem X2 I started to recover. But it drew my attention to - what is going to happen when I can’t do all this myself??? Most Dr’s and hospitals can’t even handle pumps and cgm’s let alone a care facility - god forbid. It was down hill from there with my depression.
This is an important thing to talk about, so thank you for sharing. We all are looking for solutions (combinations of things) that work best for us and our Diabetes. When things don’t work, we are able to revert to tried and true things that have worked for us before…then we keep on keeping on!
Lisa 
I think I referred to it later as a “cesspool”. It wasn’t really all that cozy of an experience for some of us. 
I do believe. She ALSO would rather march through it all alone before “burdening” me with anything… and she gets away with it for a spell… before I realize what’s happening. She’s a slippery one. But every time I nail her and she spills the beans, she’s always lighter the next day. Easier going. I can see there’s a bit of joy or passion or fire that was was missing before we talked. That’s when I’m happy. 
There’s definitely a chance. I wasn’t thinking about comparing me to me. I could give myself a run for my money.
Wow so much like me. If someone “pins me down” I will finally open up and feel much better. But I seem to need someone to ask. REALLY ask.
This is awesome. I needed some new material for my late night medical research.
I’d also like to bring you with me to my next hand appointment so you can 1) pronounce that, and 2) go “BAM. Done” like that when the doc looks cross-eyed at me.
You know, too many women leave their appointments feeling like their doctor thinks they’re crazy. Not to put a gender spin on this, but I can’t really see how I can avoid that now, but men walk in and are taken seriously. Women are handled differently and are either told there’s nothing wrong (or nothing that’s not a result of anxiety or depression), OR are treated like they’re a hypochondriac.
Example… I had brain surgery in 2007. I have a large syrinx (cyst) that continues to occupy a good portion of my spine. I have type 1 diabetes and have a history of melanoma. I went to the hospital for a sudden and severe bout of vertigo. I kept falling into walls. I was sent home a couple of hours later. Months later, my husband, with NO history of NUTHIN went to the hospital for some dizziness… he was admitted and tested for everything under the sun.
I said I was going to sleep an hour ago. I should’ve. And quit while I was ahead. Just wanted to stir stuff up first.
Well now we can teach them a thing or two! I had to put it into a dictionary app with a “pronounce” option so I could hear how to pronounce it! Like TravelingOn expressed thinking it was due to diabetes. I had heard there was a connective tissue complication related to all of these issues but I never knew the name.
I like big words. Always have. And if I don’t know how to pronounce something, I don’t let it hold me back. I figure I’m 50% ahead knowing if exists, even if I can’t say it right. 
I agree! Women I know often get poo-pooed about their health conditions. Real, serious, yes-you’re-on-the-floor-having-another-seizure, health issues. However, frequently they’re told that it’s psychosomatic. Or that they’re crazy. Or just depressed or anxious. Phooey. I don’t know if men actually get better care. But for EH, I know it bothers him much less if his practitioner doesn’t do a good job identifying his issues. He doesn’t take it personally, just regroups and finds someone who can help him. And they don’t tell him he’s crazy. Small subject sample size though. Just 1. Lol. Most women I know are more willing to share about health stuff. (Now that I say this, I think of one other friend who’s had serious issues with sleep apnea and who’s had serious issues finding a medical team who was willing to help him, and a few suggestions that he was crazy or a liar. Again, anecdotal evidence only.)
Shrug.
Coming here has really encouraged me to be polite but direct and stick to my guns about our health care. Instead of doing what the doctor wants, we do what is best for each one of us, even if it means switching doctors or seeking a second opinion.
I love this! I’m kind of known for saying big words wrong but I still say them too. Sometimes there just aren’t any other words that describe my thoughts. I wish we had verbal computers so we could all say Cheiroarthopathy and see what we come up with
I was told that my GI issues were psychosomatic. I was like, “Really? Because I feel like if my @ssplosions were all in my head, I would just tell my head to knock it off.”
I also have to be careful to not appear too prepared for appointments. I’m detail oriented, and I’m a Type 1, so I have lots of records. But I can’t let the doctors know that or else they’ll write me off as too intense and a hypochondriac and they won’t REALLY hear a single question that I ask. So I have to slow roll the doctors. It’s an art form.
Oh, that is too funny! I remember the time I thought being a knowledgeable, organized patient was in my best interest. I got more anti-anxiety, anti-depression, and sleeping pill prescriptions than one could take in a lifetime. No tests. Just prescriptions. I started to make it a habit to drop them in the trash on my way out the door as i left, which I thought was a clear expression of disgust and disappointment, but it probably just confirmed my “craziness” to them. Mind you, I was at these appointments for something that had me on the track to paralysis and went on to have brain surgery for them.
@TravelingOn… psychosomatic…I want to thank you for that. I need all of this today. I have one of those appointments this afternoon. With a pain specialist. That’s a frickin set up. I tried to ensure I couldn’t walk so he could see what kind of pain I’m talking about. Argh. 
Well, I’d rather be mad about it all than sad. I’ve left too many appointments in tears. Talk about an art form, I’ve had to learn how to do the research and guide them to diagnosis (or appropriate tests) all without saying the actual words. 
This is NOT because I think I’m smarter than my doctors, just to be clear. I’m not, and I’d love to walk in and let them do the detective work. This is because it’s a flawed system, and even though we have more state of the art whatever and have reached new heights of whatever, there’s just not time. And none of those things can make up for the disconnect. When I can walk into a doctor’s office with visible pump, sensor, and Libre and still be asked whether or not there’s a family history of diabetes… you get it. Either that or you’re like, “wow. She’s crazy.”
I have had this experience with two gastroenterologists, my high risk OB, two endocrinologists, and my son’s ENT doctor.
I don’t withhold information, but I ease into the discussion with them. I truly think that doctors are so liability adverse these days that they are more comfortable with middle of the road patients. If I am too on top of things right out of the gate in my discussions with them when they are getting to know me and the situation, they tend to shrink back a bit and decide I’m not someone they need to delve too far into health stuff with bc I have it covered…or something like that. I’ve just learned that I can’t go into appointments with new specialists and lay it all out there and ask direct questions without giving them time to really warm up…which may take a few appointments. Otherwise the dynamic gets defensive on their part bc they’re trying to see x number of patients for 7 minutes apiece and really can’t get that deep right off the bat.
YMMV. But this is my approach after lots of weird health issues popped up around the same time. And then having to go through a different set of weird health issues with my son (which turned out to be mold in his day care…and holy cow, that was an Erin Brockovich detective story…but my experience with my own specialists really helped me to navigate that nightmare).
Maybe specialists react differently to male than female patients? I never thought about the gender dynamic, because I usually don’t, but seeing some of the comments above does raise this as a viable question.
I never had a stitch until I was 27 years old. Not one. I’ve since had SUCH a run of medical problems, it’s been unthinkable. I live in medical offices. It’s an art form, as @T1Allison said. It’s learning how to get the most of an appointment. I have a history of melanoma and had an open sore just under my eyelid. It opened up while I was away on vacation. By the time I got home, it had scabbed over. I saw my melanoma doc, and he said not to worry about it. So I didn’t. Two months later, it did the same thing. This time HE was on vacation. I took pictures. I did some research. Basal cell carcinoma was what I found. I saw him when he got back. This time, a little more irritated, he told me not to worry about it. Barely even looked at the pic. So I didn’t. It was harder this time, but I didn’t. Until it did the same thing again. For a year and a half, 5 appointments, I was told it wasn’t basal cell like this, “This is NOT basal cell, Nicky,” and not to worry. To stop with the pics. The last time it did it I called for an appointment for the same day. Again, he was out of town. I went to my other doc— a female dermatologist (who also specialized in melanoma). She says, look, it doesn’t look like basal cell, it doesn’t behave like basal cell, but it’s obviously not NOtHiNG and sent me for the biopsy. It was basal cell. In my experience, maybe it’s as a woman (but maybe not), I have to be prepared for a fight to get good care. I have a medical history that is RIDICULOUSLY long and complex, and I have to start from scratch at every appointment.
Except with my endo. Who happens to be a woman. With a calculator. And plenty of time. I’m thrilled to let her do her job. I wish she could be my doctor for everything. And I’m sitting here in her office now as relaxed and unprepared as can be. Except for to ask for some Tresiba. I’m organized enough to get that done today. And to test my meters… I won’t forget that.
When navigating my son’s mysterious health issues, it got to the point that his original ENT doctor told me, “No reasonable person would conclude what you are concluding. Your child is just a sick child who is going to be very, very ill for 50% of the time for the rest of his life. You need to get used to that fact.”
Then, I went to an allergist who tested him for every mold under the sun (because crying day care workers had driven around town trying to figure out where I lived and they ended up on my front porch telling me that the day care was riddled with mold but their jobs had been threatened if they told any of the parents). My son tested a little allergic to one specific mold…a tropical mold…that happened to be found in the infant room and the toddler room on a secret air quality report that the day care director had had done by her family’s business the year before to shut up the employees who were all really ill. Of course, none of this was reported to the county inspector. Anyway, the allergist said, “Do not ever let your son back in that building. He is only a tiny bit allergic to that mold, but with symptoms this severe, that mold has to be ALL OVER that building.”
I never let my son back in the building. He got better within a week. Gained his weight back. Stopped crying. Eczema cleared. Ear infections stopped.
By the way, the mold was physically growing in his sinuses. I switched to a different ENT doctor in the same practice (they all merged locally and have a monopoly), and he told me that I was crazy but he did one final sinus swab to shut me up. My son’s test showed that tropical mold physically growing in his sinus cavities. The ENT who did the test said it was false positive and must have been contaminated…coincidentally with the SAME mold that I had a record of growing in the day care?? Right. Coincidence.
I took that lab result to our pediatrician and she screamed in shock. Screamed. In the exam room. She now tells all of her patients to avoid that day care.
Funny thing, the day care’s inspection reports all come back with only 5 token infractions per quarter (trash can lid missing, run of the mill stuff) while all of the other day cares in the area always have at least 20 infractions per quarter. The staff told me (while crying on my porch) that when the new day care inspector started with the county that she used to cite that day care the same as every other day care. But then something changed and she goes really easy on them now. I don’t know what happened, but I reported the mold issue to the that inspector. Nothing happened. I do know that the day care director tried to pressure the staffers into submitting false statements that me and my husband were unfit parents, so any complaint we registered with the county could be countered with how we were horrible people and get us investigated. The staffers were strong and refused to make false statements because they knew us too well for that.
So yeah, navigating communication with specialists has to be approached with great care in my limited experience. They don’t like real serious problems that might result in litigation. The ENTs compromised my son’s care because of it, I’m sure of it. They were tired of me being in there every Friday (my day off) with my sick son. Well, so was I, but what can a mother do?
A truly frightening set of events. Glad you got it figured out. I would say that not being able to trust others to take care of my child was a key reason we chose to have my wife stay home until everyone was in all-day school.
Totally support that! And I wish I could have done that back then!
I carried the health insurance and I felt SO guilty about that and being T1D. But my husband worked for a small firm that had had a lot of cancer claims, so losing my income plus paying $20K for premiums/deductibles was not possible. And then being in this gaslighting medical mystery (plus the day care was spanking my child for screaming bc he was so ill, I found out after the fact) was a struggle to navigate as a family unit. You have these specialists telling you you’re crazy. You have this sick child. You have to keep everything floating financially. You have to keep taking time from work to go to doctors appointments. It was BAD. Everything was BAD. But then it got a lot better. Took a long time for the dust to settle. Most important thing is we emerged intact.
We hired an individual for in-home care whom we still have the great fortune to have with us. She’s had my boys one way or another for their entire lives. But we had to stretch everything to make that work. We had to, so we did it, and we’re all better off because of it.
I never knew what I was in for. I interviewed day cares. I did site visits. I talked to locals. I read the inspection reports. I didn’t take any of it lightly. It wasn’t enough. The only thing that saved us was how invested we were in our individual relationships with all of the staffers and them doing the right thing. Without that, we would have been hosed.
I hope you don’t think I was judging you. Everyone does the best they can, your situation dictates so much about what decisions are available to you and your husband. I am sure I would have done something similar in your situation.
On the contrary, I totally agree with that you said! And everyone decides what they can with what they have!
I only elaborated because it tied back to diabetes. I felt so INCREDIBLY guilty that I was diabetic and required so much medical expense to keep alive. I know that sounds crazy, but when you can’t help your kids and your hands are tied, emotions run high. That’s all I was trying to explain since it related back to T1D in that way.
Yes, you are so incredibly selfish by having diabetes. I can’t stand even being in the same room as you. /sarc
With that much guilt, you would make a GREAT Catholic. /additional sarc
Honestly, you and my wife would probably get along great!