u/c_s_fen

Hype me up to put on a new sensor lol. I took a couple days off because my last sensor was amazing to start but then started falling off and was reading CONSTANTLY under 54 sending me the obnoxious loud alarms when most of the time I wasn’t even actually low at all or at least not that low so I honestly just got tired of all the alarms and questioning the thing.

I did my stomach the last 2 times and it’s by far the most accurate but the first one got itchy after a couple days and I accidentally ripped it off in my sleep forgetting it was there and going to itch it. And the 2nd obviously like I said was great until it REALLY wasn’t lol. The 2 before that I don’t think worked at all if I remember correctly, they were arm sites.

Probably gonna try the stomach again. I’ve started a full time job recently so it is indeed important for me to put it on again cause it’s harder to track and manage at work without.

Those of you that have kids and epilepsy, how do you do it? What precautions do you take? How can you guarantee with 100% certainty the child’s safety if your partner isn’t around when it happens?

I nanny a 7 month old and it’s been totally fine so far and even today I wasn’t feeling well but was able to keep him taken care of, safe, and happy in his little bouncer or in his play pen while I sat on the couch. I have yet to have a seizure while there, all of mine happen at night. And if I were to have one, I get a long enough warning that I’d be able to put him in a safe place but my family is so worried I’d put him in danger. His parents don’t know about my condition because it is a non issue and hasn’t been relevant and if it became an issue I would stop nannying and tell them in a heartbeat.

This probably doesn’t even make sense I’m sorry I had a seizure tonight and am out of it. But yea if you understand what I’m trying to say I’d love a response.

Trying my sensor on my stomach for the first time!! I’ve had so many issues with them when I do my arms so I decided to try the stomach cause I’ve heard a lot of you say great things about it and about the accuracy. It hurt a little going in but overall not bad AND it barely bled! My arms tend to bleed a fair amount. Part of the problem I have is I’m really skinny so there’s not much fat at all on the arms. Good problem to have I guess lol but a problem nonetheless. I did it above my waist line off to the left side. I tend to wear high waisted pants/shorts and have a pair of high waisted shorts on right now so I made sure to do it above that. I have 45 minutes left on the warmup but will report back on how it’s going! Also used the right app this time so I can access it on my Apple Watch!

Disclaimer: I have messaged my doctor, I know none of you are healthcare professionals.

I’ve been having a really bad flare up the past few weeks and I’m running out of things to try. I have both POTS and VVS and for me they often times play off of each other (one causes the other and it’s a never ending cycle). That’s what’s been happening tonight. The last few weeks tho it’s been nonstop flares whether it’s POTS or VVS. I get seizures when it’s really bad (still haven’t quite figured that one out) and had 40+ seizures plus multiple syncope episodes in a 5-day span about 3 weeks ago from some sort of viral infection and that made me flare even more and I’ve just been stuck in the trenches since then and now I’m sick again. I’m immune compromised for some reason so I get sick a lot. Not exactly sure what but I have a bad headache, low grade fever, and a mild sore throat and stuffy nose. I’ve also been having bad seizure auras the last week but no full seizure but that’s besides the point. I’ve tried all the classic things. Compression, salt, plenty of fluids and electrolytes, staying warm cause being cold is a trigger for me, you name it. At this point I’m not sure what else to try. Tonight I thought for sure I was gonna pass out and my BP was 89/66 (low but also way lower than my baseline). Any tips that I haven’t tried or just support too is greatly appreciated.

P.S. going to the ER is not an option for me.

Hello all! First, I want to say I’m sure there are mixed experiences but American Airlines has been absolutely wonderful to work with as far as my service animal! They are kind, easily accommodating, and respectful! They were able to move my dog and I to bulkhead seating (Ruby likes this better) free of charge!

Second, I’m wondering if anyone has any tips of flying with her! It is a quick flight (about an hour and a half each way). This will be her 3rd and 4th flight ever (2nd trip). I was very nervous, but she did amazing on the first trip, we even got complimented saying she seems like a pro! She kept her focus on me, even when they’re was other non-service animals barking at her, did PERFECT through security (they had me put her in a sit stay and walk through myself then call her through and she had her eyes locked on me the whole time and didn’t move til I gave her her cue). Obviously I know this is how service animals are meant to behave so don’t come at me, it was just a little nerve racking the first time. I’m sure everyone can relate to that. Anyway, she was definitely a bit nervous on the plane, mainly for takeoff and landing. Again, not misbehaved but panting a lot and had a hard time getting comfortable. But, it was a great learning experience because the 2nd flight she did much better, was a lot calmer, and we were in bulkhead aisle instead of extra legroom window so now we know for future flights that’s better for her.

My point is, is there anything I can do better or differently this time around other than the seating? I will be bringing a small blanket that she can lay on since that helped as well on the second flight. I will also be bringing a portable water bowl with a water bottle. She probably won’t drink it but it’s good to have. We also added the task “place” since the last time we flew and she has it mastered so I think that will help too. Let me know if you have any other suggestions!

Hi guys. I (22F) just got diagnosed today and I’d be lying if I said I wasn’t a bit lost, confused, kinda scared? It came as a bit of a shock.

Backstory: I’ve had blood sugar issues for years now, both hyperglycemia and hypoglycemia but not diabetic and no one’s been able to or cares to figure it out.

Other symptoms: irregular extremely painful heavy periods to the point I was severely anemic so my dr had to put me on birth control. Tried the pill, I bled for 2 months straight and it did not work. Tried Nexplanon, bled for a few weeks, then successfully stopped my period (except one random one 6 months later). I do have acne. I’m gluten intolerant. Those are the biggest issues I can think of.

I went to a new endocrinologist today for the blood sugars and within 5 minutes of the appointment he asked “do you have irregular cycles” yes I do. Then he said “and you have acne you have PCOS. You don’t have to have cysts to have PCOS you just need to meet 2/3 criteria and you do. That explains your insulin resistance and hypoglycemia too.

I’m just not quite sure how I feel. I knew/assumed I had either PCOS or Endometriosis bc of the nature of my periods and my cycle. But it kinda caught me off guard. It does explain the blood sugars, cystic acne, and my cycle issues. But I don’t have unwanted hair growth, I had unexplained rapid weight gain but when I went gluten free I lost all of it and now I’m at a very healthy weight (5’8 140 lbs) so overall I haven’t had the weight issues. I just don’t know what to think. So many people take so long to get diagnosed and no one connected the dots the last 3 years for me but he diagnosed me in 5 minutes. Also my insulin levels and testosterone levels were actually good last time they checked (he’s rechecking) but also he did say me being on birth control will make it show up normal even if I have it.

I do meet with an OB on 6/22. I just moved here so having to get set up with all new doctors. I also have POTS, VVS, hEDS, MCAS, and seizures.

Any advice or thoughts would be greatly appreciated!