I'm currently about 8 months pregnant and actually rather enjoying being pregnant, just not being T1 and pregnant. I was diagnosed when I was 11 and am now 35. This will be my first child, a son, and feel like I have been battling the medical system the entire way. I knew my experience being pregnant would be different than that of my non T1 friends but the level of medical instrusiveness has IMO stolen out a lot of the pleasure from what would otherwise be a much more enjoyable experience. My A1cs have been good, not great, but well under 7.0 the entire pregnancy but I feel ganged up on and attacked by my medical providers a lot of the time about my sugars being too high here and there, like when I have a sick day or a sinus infection......things that are simply beyond my control. Specifically, my baby is large (about 4 weeks ahead of the growth curve) but my husband was 11 lbs and I have a cousin who was 12 lbs, both to non-diabetic moms, so there's definately a "big baby" gene on both sides of our family that has nothign to do with my blood sugar levels. I have been working my a$$ off testing 10 times daily and eating limited carbs but never feel like I am doing good enough for my doctors. I think the crux of this whole unpleasantness is that people being so critical of my control takes me back to being a teenager who's feeling ganged up on and defensive. I don't know if this has been anyone else's experience, but I sure can't wait for him to get here, simply so I can stop feeling like a micromanaged 15 year old:)
Anyway, I didn't mean to get off on a "poor me" tangent. I am thrilled beyond words to be weeks away from the birth of my son! I was just wondering if anyone else had felt extremely frustated with their healthcare experience while pregnant. Hope everyone is having a great day:)
Well your story (T1) is similar to mine. I too was diagnosed at 11 and I am now almost 32. I am only 2months pregnant but this is my first. I did read about the high probability of all diabetic moms (T1, T2, Gestational) having larger babies. My mom had gestational with two of her babies, my younger brother and sister, and they were 11 and 12lbs. She didn't exercise really or watch what she ate. That is my fear as well...a big momma and a big baby :) I have constantly been battling my blood sugars. I have never, since I was a rebellious teenager, been this consistently high. Before I was prego my A1C was 7.2. I was taking Symlin which helped and I am not on a pump. I was told that Symlin was a Class C drug and that since I am taking Lantus which is also a Class C drug, I should do both. I am watching what I eat and limiting my bad carbs but still I find the blood sugars crazy. I get excited when I see a 140 or a 115 instead of a 240 or 280. My High Risk doctor, my Endo and OB have both stated that my BS are too high (yeah no SH#$!) but my body seems to not cooperate. I know they mean well but I beat myself up enough alone not to have doctors down my throat about my damn blood sugars. I am scared that the highs will affect my little one. I am hoping with my appointment tomorrow that they can shed some light on what to do.
Don’t be frustrated, you are doing something amazing. You are a strong woman to be creating with a less than perfect pancreas. It takes a lot of work physically, emotionally, and mentally. You probably will deliver early. Did they talk to you about inducing you or a cesarean? I just want to know what to be prepared for. :)
Nicole, congrats on your pregnancy!!! Welcome to the next seven months of battling out of control blood sugars:( It does remind me of how hard they were to control when I was a teenager, only worse. It seems like the level of admonishing me for bad blood sugars is pretty much what I remember from being a teenager as well. Every time my sugars get evened out now it seems like the new dose works well for about a week and then things change again. I'm taking probably 3-4 times more insulin than before I was pregnant, but it will be so worth it! I'm on a pump, so I don't know much about Symlin, but am glad to hear that's helped you a bit. It sounds like you're doing everything you can-watching the carbs and testing frequently. I was a little heartbroken when I realized I couldn't eat a pregnancy fantasy diet I'd always envisioned....one where my husband runs to get me banana shakes at 2:00 am. Once I agreed to no more than 45 grabs/carbs per 2 hour incriment, my blood sugars did stabilize quite a bit. I know what you mean about beating yourself up enough without these doctors making it worse. I had a terrible argument with one of my providers where I tearfully told her I was doing the best I could. It frustrates me that she can't see that the stress she's heaping on me is actually making my sugars higher, too. Anyway, I ended up leaving a message for her that I would have to find a new doctor if every visit was going to be us arguing about sugars versus talking about the baby. Things have seemed to be going better since. It did make me feel better yesterday when I was at my second weekly non-stress test of the week and talked to a mom with gestational diabetes having her SIXTH child, all of which she'd had gestional diabetes with. Their weights all sounded normal (7-8.5 lbs) and no complications. All perfectly healthy babies. Also, her control was so bad.....she said she was just eating whatever she wanted and making her blood sugars up so they wouldn't chastize her, which sounds like a terrible idea, but it sure made me feel better that her control was so terrible and all six of her babies have been just fine. She said with all of her babies they'd told her they were weeks ahead on the growth curve (one 8 weeks ahead) but again, they were all within 6-8.5 lbs which also made me feel better about how badly they'd made me feel for my baby being 4 weeks ahead on the growth curve. After speaking to this woman, it certainly doesn't sound like their way of measuring is an exact science.
I'll let you know what I hear about a cesearean/incuding. I'm meeting with her next week and the baby is breech, so I assume it's a possibility because she said he's too big to turn. I don't know if she would have automatically talked about a cesearean if he were in the correct postiion simply because he's big. I'll keep you posted.
I hope your appointment went well and they were able to shed some POSITIVE light on ways to help you:) I am keeping good thoughts out for you and your little one!! Keep yoru head up and remember you too are doing something amazing. Thanks for all your kind words and take care.
OMG, I am having the same FRUSTERATING experience with my OB/GYN!!!! I'm almost 12 weeks pregnant and everything has been going well except for my experience with my OB/GYN. She is clearly unfamiliar with caring for Type 1 moms-to-be and treats me like I have gestational or Type 2, which we all know are very different, and even her experience with that seems limited. She actually refused to give me a referral to a perinatologist, who I'm seeing behind her back anyway, and has yet to schedule an ultrasound for me!!!!!!!!!!!!!!! I've been diabetic for 29 years this seems like basic stuff. The bottom line is that I'm in really good control, which I achieved through doing 20 blood tests a day and some pump acrobatics. I am also on three times my normal amount of insulin, and I'm sure that will change throughout this process. I can't believe that we are the only Type1's going through this and I dont understand why there seems to be such ignorance from "medical professionals" as to how to deal with us???!!!?!! We haven't come very far since I was in 1st grade and my mom had to have JDRF representive some to the school to explain to the teachers that I would need to have some unscheduled snacks, not because I think I'm special, but because it's necessary. The doctor hasnt allowed me to be excited about this time in my life, which I waited and planned for, cause of all the tactless horror stories she tells me and her nasty disposition toward my situation, as if I chose this.
At least I was able to see and hear my baby's heart beat for the first time last week, due to my side realtionship with my perinatologist, and everything is great and healthy in there. Thank god.
OMG, I am having the same FRUSTERATING experience with my OB/GYN!!!! I'm almost 12 weeks pregnant and everything has been going well except for my experience with my OB/GYN. She is clearly unfamiliar with caring for Type 1 moms-to-be and treats me like I have gestational or Type 2, which we all know are very different, and even her experience with that seems limited. She actually refused to give me a referral to a perinatologist, who I'm seeing behind her back anyway, and has yet to schedule an ultrasound for me!!!!!!!!!!!!!!! I've been diabetic for 29 years this seems like basic stuff. The bottom line is that I'm in really good control, which I achieved through doing 20 blood tests a day and some pump acrobatics. I am also on three times my normal amount of insulin, and I'm sure that will change throughout this process. I can't believe that we are the only Type1's going through this and I dont understand why there seems to be such ignorance from "medical professionals" as to how to deal with us???!!!?!! We haven't come very far since I was in 1st grade and my mom had to have JDRF representive some to the school to explain to the teachers that I would need to have some unscheduled snacks, not because I think I'm special, but because it's necessary. The doctor hasnt allowed me to be excited about this time in my life, which I waited and planned for, cause of all the tactless horror stories she tells me and her nasty disposition toward my situation, as if I chose this.
At least I was able to see and hear my baby's heart beat for the first time last week, due to my side realtionship with my perinatologist, and everything is great and healthy in there. Thank god.
Nancilla
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Wow, that sounds terrible. Like, find-a-new-doctor-as-soon-as-possible-terrible. Early in my first pregnancy, my perinatalogist referred me to a CDE who I thought was a fairly nasty woman and who I felt treated me like a type 2 or gestational diabetic. Needless to say, I "fired" her and opted to see someone else for my pre-natal diabetes care. Maybe your perinatalogist can help recommend a different OB who has a little more experience with T1's, or at least isn't so nasty towards you.
I was a little heartbroken when I realized I couldn't eat a pregnancy fantasy diet I'd always envisioned....one where my husband runs to get me banana shakes at 2:00 am. Once I agreed to no more than 45 grabs/carbs per 2 hour incriment, my blood sugars did stabilize quite a bit.
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I know this feeling all to well. I spent a large part of my first pregnancy so resentful of all the big fat preggos who could slurp down milk shakes and gobble fries to their heart's content and just say, "oh, the baby wants it!". I seriously felt rage over it sometimes! (Usually when I'd eaten nothing more than a half a slice of whole wheat toast and was staring a a blood sugar reading of 250.) I'm 21 weeks pregnant for the second time around and I can honestly say the experience is MUCH more enjoyable this time - diabetes and all. I guess I realize I got through the first time, my daughter was born very healthy, and this all happened without "perfect blood sugars" 100% of the time. Sounds like talking to the mom with gestational diabetes helped you a little with this.
I still get a frustrated with the loss of the "pregnancy fantasy diet" (I LOVE the way you put that!) I have a friend whose due only 2 weeks ahead of me (she doesn't have T1) and she was saying to me the other day that she and her husband went out for their anniversary and it was so nice to be able to indulge and pig out and have the excuse of the baby. She said, "don't you just LOVE that part of being pregnant?" I pretty much wanted to strangle her, but I know it's not her fault...sigh. I'm like you, no more than 45 grams/carb in two-hour increments. Sigh again.
Hang in there - you're almost done!! And the couple weeks after you deliver are AWESOME, especially if you're nursing. I hardly needed any insulin at all in that time period and that's definitely when I was able to pig out on some delicious foods!
I COMPLETELY know what you're talking about. I am 5 months pregnant and am really frustrated with my OB/GYN(s)... For anyone trying to get pregnant I suggest you "shop around" when deciding on your caregiver to ensure they have experience with T1 and pregnancy. I just stayed with my regular OB/GYN and it's been a nightmare. Part of the problem is that my OB's office makes everyone see all 8 of the doctor's in the office throughout your pregnancy to ensure that you've at least met everyone once by the time you have the baby (b/c they can't guarantee who will deliver). Sounds like a good idea, but not having one person to bring it all together is frustrating... plus I've gotten different information/advice from each doctor so far (I haven't seen anyone twice in the 5 months I've been pregnant). Not to mention the added confusion that I'm also working with a high risk OB (MTM)... He is only handling the ultrasounds and providing recommendations to my OB's office though and those 8 OB's don't always have the latest info from him. It's a big mess and it's making me crazy! Up until yesterday all the doctor's said I was doing great, although all wanted to look at my BG readings in a different way and the last OB complained of needing an engineering degree just to understand my readings... anyway he gave me a new format to use (which is what they ask their patients with gestational diabetes to use) and it only has 4 readings per day... fasting and 2 hrs after each meal. This doesn't really give a good overall picture, especially since my 2 hrs post meal readings seem to be the craziest right now... I'm often below 100 an hour and half after I eat and then my sugars start going up for the next hour after that (just in time for that 2 hr post reading). This delayed elevation in BG just started about 4 weeks ago... so I just started making adjustments for it (using dual and square wave bolus's) about 2 weeks ago... so I'm still figuring it out and trying to find real trends to react to. Anyway, I gave the new BG schedule to the OB doctor I saw yesterday (my 6th "new" OB at the office!) and she said I was not managing my diabetes "at all" and that if I kept it up my baby would not survive! She went on to say that any readings below 70 and above 120 are unacceptable and I need to start managing my diabetes. I told her my target is always between 70-120 and that I do monitor things closely... but she wasn't hearing any of it. She had already made up her mind. I should mention that all but about 12 of my readings for the past 10.5 weeks were between 70-160 and well over half were in the 70-120 range... so I thought that was pretty good AND that was the "realistic" expectation I was given by the MTM. Although not ideal to go above 120; he said that keeping my sugars below 160 was more realistic as long as it was the exception, not the rule (strive for <120 but don't beat yourself up for a few higher readings). I feel like the OB I saw yesterday has NO CLUE what type 1 diabetes even is. My A1C was 6.1 and she said I'm not managing my diabetes "at all" (not only did she say this to me, but I heard her telling one of the nurses this in the hallway when I was in another room getting my flu shot). I guess the 15+ BG tests, CGM, corrective actions as needed, and eating just about the same thing everyday to try and provide add'l consistency doesn't count for anything! :( I was too upset to even respond to her...
It's really hard not to feel awful and worry when someone tells you your baby isn't going to survive. From the beginning of the appt to the end of the appt my blood sugars went from 81 to 156... and I hadn't eaten anything for over 4 hours. Maybe if she realized how much non-food things (like stress!!) can impact your sugars she would have been a little more appropriate in her approach. Arghh... Anyway - sorry to vent, but people without type 1 diabetes just don't get it!
The good news is that based on all the ultrasounds and other tests I've had so far the baby is perfectly healthy... so I just need to make sure it stays that way.
Oh yeah… and I also agree that it stinks to have OB appointments where all you talk about is your diabetes and nothing about how your’re feeling or what’s happening with the baby. I was literally being scolded while she was checking the baby’s heartbeat – a really fun thing to listen to if you can hear it over the doctor yelling at you.
Seriously, how do these "professionals" operate in the real world?????!!!! Keeping your BGs between 70 and 120 is no easy feat when your not pregnant, much less when youre combating hormones and a baby who acts like a parasite living inside of you. I think they are all so totally out of touch that I go to appointments now with the intention of not listening to any of their screwy advice cause I know that no one knows my body better than I do, and I aslo know, as I'm sure you do, that you're doing everything in your power to keep the baby safe and healthy. The last time I saw my OB, I did a test in her office and I had gone from 69 to 179 in 20 minutes and she gave me a funky look, to wich I returned the look, and said that "unessary aggravation usually does that like dealing with difficult people". She got the hint and walked out. I'm afraid she and I are gonna come to blows, but the problem is that the people I trust and like like my perinatologist won't give me a referral due to liability reasons. I'm basically aimlessly looking for a replacemement for witchy-poo.
The other thing I find hysterical is how this has literally become a full time job. Between writing down meals and carbs and boluses and BG before and after, it's like I can't go outside cause god forbid I miss one anecdote about my food logs and BG logs. I am literally in front o the computer logging stuff all day long.
Where do you see your endo? Mine is at UCI Irvine and on his recommendation I am going to be having a pre pregnancy consult with a high risk ob/gyn MFM guy at the same location. Is there anyway insurance wise you can switch to a diff ob? Possibly one thats a one stop shop as well? ob/gyn/MFM etc? Your OB sounds awful and I am so sorry she is stressing you out like this. I know if it was me id be trying to find a replacment. I already know that if any docs give me crap about fluctuating blood sugars during pregnancy I am going to either laugh at them or tell them off. Guilt tripping me wont work. See I turned out perfectly ok and back when my diabetic momma was pregnant with me they didnt even have glucose meters on the market. I know for a fact there is no way in hell her blood sugars were between 70-120 all the time. I realize they are just looking out for us and our unborn children but sometimes they take it way too damn far. Anyway drop me a line sometime - like i said before it seems we are both in So Cal. Would be nice to have someone locally to chat about all this fun fun D stuff.
You just completely hit home for me :) My mom is also a type 1 diabetic and she has had 5 children. She was in way worse control. I do understand that everyone wants to eliminate any possible risks that can be potentially avoided...I get that. I too am way paranoid when my blood sugar spikes and 268 and I wonder why lowcarb yogurt and cottage cheese would do that. I appreciate your reality. Thank you
Hey Nicole. Its always nice to meet others with some of the same life experiences. I totally say do your absolute best to keep your sugars in check - but as a type 1's you and I both know its not possible to be perfect all the time ( esp during a crazy time such as pregnancy). I think all we can do is our best - treat when high, treat when low - and try to be in range. I dont agree with doctors stressing out or berating someone who already knows that they should bei n X range and who is doing there best. Like i said I turned out ok - so im not going to let it get to me if I have some off numbers.
This sounds probably totally awful but I am more worried about my health than that of my some day babies. Its not to say that I wont be in crazy mother mode doing all i can for my unborn, but again the experience with me and my mom was I was perfectly ok - granted i was born a month early, and I am sure this is why i have such bad asthma and allergies - but i had no problems. It was she that had long term health consequences. It freaks me out thinking of putting myself in harms way even inadvertently. This is something I am still trying to overcome ( the worry).
I remind myself things were so different back in 1980 and I try to have faith that the kind of care that has been available to me to better take care of myself during my time as a diabetic will help me have a healthy pregnancy.
The problem with going to Hoag is that they have the "Magella Group" who specialize in high risk pregnancies, but they only act as consultants at the Newport Beach location. If I went to Laguna Hills or Saddleback Hospital, I would be able to do a one stop deal where I'd have a perinatologist doing both jobs. This OB that I'm seeing is ancient and mean, which I could totally deal with, but she's ignorant too...that's a deal breaker for me. I don't want to just blindly choose a random OB and have the same issue so I'm waiting to talk to my perinatologist about some things that have gone down recently and I think she'll give me a recomendation. FYI, the "Magella Group" in either location is FANTASTIC from what I've experineced. I LOOOVE my perinatologist. She's compassionate and normal and realistic.
I'm no spring chicken and this might be my only opportunity to experience this and I'm NOT gonna let some ignorant dinosaur ruin this experience for me. I know that I'm doing EVERYTHING in my power to care for myself and this baby and at that's all I can do. I get the feeling a lot of these OB's don't approve of type 1's having babies and maybe that's why there's this underlying animosity towards us(?) Too bad!!! It upsets me that I'm dealing with someone who doesn't get it and is mean, but it REALLY upsets me that I'm not the only one and their ruining this for other moms-to-be who should be allowed to enjoy this experience.
Thanks for the encouragement from all:) Sorry to hear there are so many more stories of frustration out there. It sounds like everyone is working hard despite getting sometimes negative feedback.
2 more weeks for me, woo hoo! I was put on bed rest, not because of the diabetes but because of preeclamsia. It's going to be a scheduled c-section because he's breech and because of the blood pressure. I know it sounds weird, but it's kind of nice that some of these other things have taken the focus of being T1. There's no shaming me when my blood pressure is high.....they grasp that it's out of my control versus when the blood sugars were high and they seemed to insinuate that I'd eaten a cheese cake all by myself and then lied about it versus the highs being from stress. They're much more interested now in what my blood pressure is doing versus by blood sugars. Anyway, enough venting from me. I'm loving relaxing with books and movies for the next 2 weeks and can't wait to meet my little guy:)
Best of luck to those of you working hard through this rather trying experience. It's so worth it!
Hey, I just saw your post, even though it's from a week ago. Luckily, my medical team was pretty supportive during my pregnancy -- not berating me for the random highs that are impossible to avoid with NO WORKING BETA CELLS.
But, I just wanted to say that during my first trimester (my worst time for BG's and stress), we went out to dinner. I saw a pregnant lady eating a huge slice of pizza without thinking, and I burst into tears! I couldn't imagine just eating with intense stress and guilt. :P