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Posts from the ‘Diabetes Complications’ Category

Diabetes Pregnancy: Now and Then, Part Two.

Welcome to the continuation of Laddie’s pregnancy story, showing what pregnancy with type 1 diabetes was like back in 1979 and 1982.  Today is a continuation of her story, with details about her sons’ births, the cost of care, and how diabetes did, and didn’t, play a role in bringing her sons into the world.

For more about Laddie’s life with type 1 now, you can visit her blog.  She’s awesome.  🙂

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1979: Baby Boy #1

I was diagnosed with diabetes late in 1976 and became pregnant with Mike less than 2 years later. I was referred to the obstetrician down the hall from my internist’s office. I didn’t know to ask for more intensive care and my personality probably would have insisted that I was not “different” from other pregnant women in their mid- 20’s. There were no home BG meters in those days and I was in good health. So I am not exactly sure what would have been done differently.

What are some of my memories? I had “morning” sickness that got worse as the day went on. No puking—just sickening nausea. I was hugely sensitive to smells and barely survived the weeklong visit of my mother who smoked. Although women who suffer from morning sickness are advised to avoid greasy foods, I totally craved Kentucky Fried Chicken and without fail it made me feel better. I remember the clothes: two jumpers, one hunter green and one navy blue, that I alternated daily with different turtlenecks and the horribly-patterned tunic blouse that I wore with beige corduroy pants. Because we didn’t know the sex of our children before birth, I sewed gender-neutral Winnie the Pooh cafe curtains and yellow-checked bumper pads for the old wooden crib that had been my husband’s. Crib safety standards weren’t a big thing in the 1970’s.

If you want a clue about my birth experience with Mike, just look at his statistics: 11 pounds 11 ounces and 24 inches long. Labor and delivery were hugely painful and towards the end, I received a drug that was magical. Most of the delivery is a blur in my mind but my husband vividly remembers the forceps. We always joke with our grandchildren about the “yankers” used in the Berenstain Bears dentist book to pull out teeth. Well, Mike had the big yankers that pulled him from his warm comfy floating life inside Mom. It took weeks (or months?) for the dent on the side of his head to resolve.

Although I mentioned previously that I only had two glucose tests during my entire hospitalization, Mike had five on the day he was born. I assume that this was to monitor hypoglycemia that is common in babies of moms with “poorly-controlled” diabetes. There were other health concerns that required specialized monitoring, but ultimately Mike was fine. He developed jaundice and required a couple of days under the lights. In today’s world I would have gone home on my third day with daily nursery visiting privileges. Not in 1979. I was asked whether I wanted to stay in the hospital with him and I did for a total of six days. I might argue that for psychological reasons and breast-feeding, it was medically justified …

1979 Statistics:

  • Birth Month/Year:  April, 1979
  • Birth Weight:  11 lbs 11 oz
  • Birth Length:  24 inches
  • Mom Days in Hospital:  6 days
  • Baby Days in Hospital:  6 days
  • Total Fee to Obstetrician:  $450
  • Mom Hospital Bill:  $1,079
  • Baby Hospital Bill:  $1,044

1982: Baby Boy #2

When I became pregnant in 1981, nobody had learned their lessons from my first pregnancy. Once again I visited the obstetrician down the hall from my internist. Once again I visited my doctor every 6 weeks for a blood test and probably drank a lot of water to dilute the sugar in my pee for Diastix tests. It is only because I know the story of Chris’ delivery that I am appalled that I did not see a high-risk obstetrician during this pregnancy. I am appalled that a C-section wasn’t performed. I am appalled about a lot of things. But I didn’t know any better and I guess my doctors didn’t either. Once again I had no home blood glucose monitoring. My insulin regimen was better than in 1978-79 with the addition of Regular insulin. However, as far as I know the doses were fixed and not an equivalent of today’s MDI (multiple daily injections) regimens.

I remember less about this pregnancy than my first. Probably I was too busy taking care of a 2-year old to pay much attention to routine doctor appointments. I do recall that Mike knew where every bathroom was in the southern suburbs of Minneapolis. “Mom, why do you need to go the bathroom again?”

If you look at the birth weights of my children, you might think that I had better diabetes control during my second pregnancy than my first. Fooled you! Chris was born three weeks early and missed the final weeks of sugar-saturated nutrition that is baby-poison.

Three weeks before my due date, I made a new casserole that had spaghetti sauce, hamburger,  and crescent rolls from the tube. This recipe is not on the list of the Top Ten Meals to have before delivering a baby and I have never made it again. Later in the evening my water broke and off to the hospital we went. My baby book notes indicate that I spent the night at the hospital with light contractions and Dad slept at home.

I did not go into labor and the next morning was given Pitocin to induce contractions. Pitocin labors tend to be “rougher” and ‘harder” than natural labors but I don’t remember whether this labor was worse than my first one. 5-6 hours later Chris was born. Once again, I want to ask: why wasn’t a C-section performed???

I don’t have many memories of Chris’ birth. I remembered the incredible pain of my first delivery but had the confidence that it would be over soon and I just needed to breathe and relax. My husband has the nightmarish memories of the birth of a baby who was delivered and stopped breathing. Chris had broken his collarbone during delivery which is not an uncommon occurrence. Unfortunately the broken clavicle bone pierced his trachea and lung. I don’t remember anything else before hearing from my husband later that Chris was in intensive care at Minneapolis Children’s Hospital and was doing OK. Actually I do not think that I even knew that there had been a problem with the delivery and must have been in some drug-induced stupor.

I recovered quickly from the delivery and 3 days later began the daily commute to Children’s Hospital. I was provided with a tabletop breast pump that I recall weighed a ton and was about a foot square. Chris was amply provided with breast milk through a feeding tube. I’m not sure that there had ever been a baby like Chris in the NICU which is usually filled with tiny 1-4 pound premies. At 10 pounds 3 ounces Chris probably weighed more than the combined weight of the other babies in the unit! He spent 15 days in the hospital on a ventilator as his trachea and lung healed and his lungs matured. In those 2 weeks there were two record-setting snowfalls of 18-24 inches and my memories are of cold and endless 11-mile commutes on slippery snowy back roads.

Chris ended up being fine and 35 years later I continue to give thanks for that. His close call didn’t need to happen. Of course I blame my diabetes for putting him at risk, but I also blame my obstetrician who didn’t perform a C-section based on the history of my first delivery.

1982 Statistics:

  • Birth Month/Year:  January, 1982
  • Birth Weight:  10 lbs 3 oz
  • Birth Length:  21.75 inches
  • Mom Days in Hospital:  3 days
  • Baby Days in Hospital:  15 days
  • Total Fee to Obstetrician:  $575
  • Mom Hospital Bill:  $1020
  • Baby Hospital Bills:  $898 + $14,795

Babies at Home:

I don’t have memories of how diabetes impacted my life once I was home with babies. However, just because I don’t recall anything doesn’t mean it wasn’t hard. If there were lows while nursing, they are lost in the brain frizz of watching soap operas and snippets of TV shows in the middle of the night and never knowing how they turned out. My scary memories of lows with young children are all a few years later when I was driving and I can’t stand to think about that. I didn’t know anyone else with diabetes when I was a young mom and I was very private about it anyway. I think I just ate lifesavers and took my shots.

I don’t recall worrying that my children would have diabetes and I don’t think that I ever pressed a Diastix strip into a wet diaper. Diabetes books indicated that the risk was low and without the DOC, I didn’t know any Type 1’s parents with Type 1 children. Also in my family, only my sister and I had diabetes and not my brother. Therefore only girls got T1 and I had boys…. That ignorance used to be bliss, but I now have 4 granddaughters.

I hate diabetes and it tried to rob me of a lot of good things when it came to having children. But it didn’t win. My babies were warriors and I was pretty darn tough also. I rejoice for the great medical care that women with Type 1 diabetes get these days and I admire how incredibly hard these women work throughout their pregnancies. Healthy babies are a prize worth fighting for.

The Patient Voice 2016: Bridging the Diabetes Gaps

Happy Friday, friends!  Today, Marina Tsaplina is borrowing the blog to help spread the word about an event she is hosting in New York City on March 20th.  It’s the debut event for The Betes organization, and the goal is to give rise to discussions about the emotional influence of chronic illness.  Part of the presentation will be a discussion about diabetes-related complications, which is a topic that we remain guarded and careful about, as a community.  I’m excited to see that topic cracked open in such a way, and Marina’s methods of tackling topics with creativity and passion should be a don’t-miss-it experience.

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Hi everyone! Kerri generously gave me a chance to write to you about an upcoming event for the diabetes community — in NYC on Sunday March 20.

Please join us!

Here’s some info:
Event: The Patient Voice 2016: Bridging the Diabetes Gaps
Date: Sunday March 20, 2016
Time: 1:30 – 5:00 p.m.
Location: 417 e. 61st street, Manhattan

Q: But wait– What’s this all about?!
A: This is the launch event of THE BETES Organization.

Q: Why does this matter to me?
A: Good question!

THE BETES work is about the lived experience of living with chronic illness- the mental health, the emotional well being, and the social dynamics. Our programming currently focuses on the type 1 diabetes space (I’ve had type 1 since I was 2 years old, so yes, it’s personal.)

That’s me in the video below.  It’s a short three minutes and should give you a good sense of how people have responded to our work and how it has touched lives.


Whatever your story is, coming to understand and express the rewards and hardships of living with a chronic condition, surrounded by community, is our task.

This act of expression gives validity to our narratives, and strengthens all of our voices, simultaneously helping those who we are surrounded by better understand the patient experience, strengthening communication and building compassion.

What we at THE BETES add to the mix is the transformative power of puppetry (yes, really!)- suddenly, all of this invisible stuff has form and shape, and we can all see it, talk to it, cry and laugh at it. It’s a powerfully unique creative tool.

The event will host a 45 minute section of our creative, participatory programming. One of our programs is on that big, scary topic of diabetes complications … it’s called the Invisible Elephant Project.

This is a sneak preview and world premiere of a major undertaking, where we have collected over 900 responses through a survey, and have led over 20 interviews with individuals. This will be followed by a heated discussion with a leading panel of patients, advocates, and clinicians, and will be followed by an award ceremony for our two honorees. This is in-between a wine reception with a top-notch live jazz trio.

It’s going to be incredible — but it will be even more incredible, with all of you with us. Actually and honestly, it will be completely no fun and meaningless without you.

We have people coming in from all over — so if you’re anywhere on the Northeast, and if you need a reason to come to NYC, this is it.

twitter hashtag: #ThePatientVoice2016
event registration page: http://bit.ly/PatientVoice

Eyeball Look-and-See.

I expected the traffic.

That’s a given, driving from southern Rhode Island up to Boston.  Even in the middle of the day, there’s traffic.  Aiming to make it for a 3.30 pm eye dilation appointment at the Joslin eye clinic means leaving at 1.15 pm in order to take the insane drive into account.

But we made it on time, with a whole 15 minutes to spare.  Insurance card provided, copay paid, husband waiting patiently in the waiting room while wife goes inside to have eyeballs dilated and examined.

The eye clinic scares me.  Always has.  There’s a feeling that washes over me every time I step into the waiting room, a sort of empty feeling of being left behind.  The walls are beige and the room they sit patients in while the dilation drops do their job is awash with muted colors and videos from National Geographic that play on repeat with subtitles, even though no one is watching.  Most people are staring in increasingly strange manners at magazines, reading becoming more difficult as the drops take effect.

I looked at my phone until the words became too blurry to read.  Before tucking the phone back into my purse, I tried to check my Dexcom result, but couldn’t read the actual number.  I went by the color – gray, which means “in range,” – thinking briefly about what it would be like if the world looked like this all the time, all blurry and weird.

It was a scary thought.  Sometimes the fear of “finding out” keeps me from making appointments on time.

This particular appointment was two months late.

I thought about complications and how we don’t often talk about them, how they’re dangled in front of us like a threat, a manifestation of our (in)abilities to take care of ourselves.  “If you don’t take care of yourself,” with the sentence always ending in a severed limb or a clouded eye.  Discussing complications in this way doesn’t help me follow through on the appointments that are required to screen for different issues, or to track existing ones.  They remain a secret, a whisper, a scarlet letter, something I’m supposed to give in to instead of fight back against.  It’s easy, at times, to reschedule these appointments.

I felt ashamed.  But I expected that, too. I hold my breath sometimes when the doctor is shining that bright light into my eye, blinding me briefly in a moment of irony.

I thought about my diabetes management over the last few months, with corners cut in some places in order to make strides in others.  I hoped my eyeballs reflected my effort.  Or at least that they held steady.

I did not expect improvement.  I didn’t expect the doctor to come in with a big grin on her face after reviewing the scans of my eyes, words like “Nice job,” and “Keep doing what you’re doing,” being issued.  I didn’t expect to see the leaking reversed or the swelling down. I didn’t expect to be grinning after my appointment.

But that’s what happened.

I thought about the things that have gone terribly wrong this year, and the things I wish I could change.  The stress of moments.  The impact that stress has on my blood sugars and my overall health.  The fact that diabetes and I have spent a lot of time together over these past 29 years.  So many variables, so much time, so many opportunities for things to go south.

“See you in a few months.  Your eyes look great.”

I didn’t expect to feel that kind of relief.  I expected to be moody and sullen on the ride home.  Instead, it felt okay to smile.  And to wear sunglasses in the dark, eliciting odd looks from Longwood medical district pedestrians.

 

Guest Post: Can Neither Confirm Nor Deny.

There’s power to the “me, too!” moments for sure, but there’s vulnerability involved in raising your hand first to say, “Me.”  Today, I have a guest post from a writer who wished to stay anonymous but who is looking for others who may have experienced something similar to what they went through.  If you’ve ever passed out or had a seizure, or have experienced a pocket of time where you know something diabetes-related happened but you can’t quite explain it, please leave a comment for this writer.  They need community now, more than ever.

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The day was just like any other. Except it was a Friday before vacation where the afternoon is extra stressful to complete everything before heading out and not looking back for one week. That morning the Dexcom sensor was incredibly itchy, so I removed it.

When the work day was done I left with a bunch of errands to run before I could really enjoy myself. At the first stop I couldn’t find my wallet in my bag even though I knew it was in there. I was disoriented and didn’t know why. I kept apologizing.  I was so embarrassed about my lack of functionality that I returned to my car with nothing completed for my errand.

An hour later I “woke up” confused as to where my phone could possibly be. I found it in the trunk of my car. There is no memory of what happened after I sat down in my car (parked). However, as soon as I woke up I knew I had passed out. Presumably from a low blood sugar based on my actions during my errand. Based on the location of my phone, I believe it is possible I seized as well. I have no way to confirm or deny this assumption.

I do not know if this will ever happen again. I do not know how I came-to on my own. I do not know why I am lucky enough to have survived this. I do know that I reached out to my support system. I reached out to the people who would take it as is and not freak out. I was doing enough of that on my own. I do know that it is a hard event to move on from. I also know I’m not willing to let the whole world know yet.

But! Has anyone had this happen to them? Or something similar? How did you continue to live your whole life with diabetes without this always being in the back of your mind? Or front and center? Did you over treat? Or start treating almost lows, which weren’t lows but actually acceptable blood sugars? How do you keep your focus on your sugars and not raise your perception of what’s an “acceptable blood sugar”?

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I’m glad you’re okay, Anonymous.

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

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Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

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:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.

 

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