#oh and you one of those continuous glucose monitors? pay me for that too
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yes, yes, insulin should be free, but needles need to also be free. like fuck I should not have to pay to GIVE myself the medication I need to survive
#its like pay me for you insulin#now pay me for the thing you need to GIVE yourself the insulin#and also pay me for the test strips so you can check your blood sugar#oh and you one of those continuous glucose monitors? pay me for that too#FUCK
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Birth Story
I figure I might as well post my birth story. Let me just start by saying this: I had a labor-free birth. I didn’t have a C-section planned in advance, but I did end up doing a labor-free C-section. I feel kind of like I cheated, but the lifetime of debt and the fact I am still recovering from the effects a week and a half later makes me feel a bit better about it. But then again, people who labor and THEN get C-sections have both. So. . . Yeah. I guess I cheated, but it wasn’t exactly my fault.
Starting about two weeks out from my due date, I started to have a lot of contractions. There were several days where if I followed the 5-1-1 rule, I would have ended up going to the hospital. Luckily, I decided to wait and see if anything progressed from there and they would inevitably plateau for a few hours and then peter out. I would call what I was experiencing “false labor” versus just “a few Braxton Hicks contractions.” There was a point a week from my due date that I was at my friend’s house. I had the regular contractions to the point she was offering to take me to the hospital. They even started from my back and looped around to my belly. But nope, no baby.
Anyway, I was diagnosed with gestational diabetes within the last couple months of my pregnancy. This meant that I was closely monitored once it was clear that diet was not controlling it alone (I just couldn’t nail those fasting levels, even though I was just a bit off target). I saw my OB every Thursday and a perinatologist every Monday. Both doctors had me on the monitors for a non-stress test. The OB otherwise did the normal OB things and the perinatologist did an ultrasound at every visit to check baby size, fluid pockets, etc. Baby measured normal but not particularly large and the fluid pockets measured normal (I guess the fear is they would be too large as well).
It was revealed during my 39th week (39 weeks 2 days, to be exact) that I would be induced the following Sunday, March 5th, if baby did not come sooner. This was a day past my due date. Neither doctor was okay with gestational diabetics going late, even though everything had been smooth sailing with baby’s health up until that point. An induction during Sunday evening had the greatest chance of yielding a Monday delivery during business hours, so I would have my doctor and not the on call. I was honestly just relieved that they weren’t going to induce me sooner. I knew my due date was out of the question because it was a Saturday and would probably mean a birth on Sunday.
Thursday, March 2nd, I went to my OB appointment, not expecting much. I was having off and on bouts of regular contractions, but I was in the throes of 48 hours of false labor just a week before and hadn’t made an ounce (centimeter?) of cervical progress. Given that I was not in the middle of anything, I thought I would get monitored, get checked, and then discuss Sunday’s plan. Maybe they’d sweep my membranes to avoid pitocin later. Easy peasy.
Well, I suppose it’s fortunate I was being constantly monitored. The NST revealed that the baby’s heart rate was occasionally dropping in response to contractions. Given the norm is usually the opposite, this wasn’t exactly good news. In total, they noticed two decelerations. The medical assistants assisting with the NSTs didn’t say anything to induce panic, so I had no idea what was happening. This was probably my sixth non-stress test, so I wasn’t even really paying attention.
When my doctor came in, she told me the news. She revealed that I was to go straight to the hospital and they would monitor me further. If all went well with the amount of sporadic contractions I was having, they would start me on a low amount of pitocin and see how the baby responded. If all was to go well, I would be induced with the intention of laboring and then birthing vaginally. If the pattern continued, I was to have a C-section. Either way: it was time to have this baby.
This was all at about. . . 11:30 or so?
. . . I kind of revealed what happened with the first paragraph, didn’t I?
I called my partner and then my mom in a panic. Knowing that my child was in distress kind of soured this whole experience for me, as you can imagine. I was crying when speaking to both of them.
My partner managed to beat me to the hospital. I really should not have been driving. Like, at all. I was so panicked and distracted. I could barely stop myself from crying. I got lost in the hospital parking lot but eventually found the area where my partner was waiting for me and had valet take my car.
I was admitted to labor and delivery and put on the monitors. I was forbidden from eating or drinking in case I would need an immediate C-section. They tested my blood sugar and found I was hypoglycemic (I think I was 62), but still they wouldn’t let me eat. They also did not fill my IV with glucose. It was getting so bad that I was dizzy just from turning my head too fast.
Finally, they decided I had been on the monitors without decelerations long enough to have sustenance. They started me on apple juice for my sugars. My parents were there at this point and they went off to get me a falafel (which was delicious, by the way).
The details of this are pretty fuzzy. I was on the labor and delivery floor for about eight hours in total. My partner and parents were there more or less the entire time. I remember that I ate at about 2:00pm because that detail is largely responsible for my kid’s time of birth. At some point between 2:00pm and 6:00pm, they started me on pitocin. I was feeling pretty confident so far. I had previous pre-eclampsia scares at the OB that were confirmed to be A-OK at the hospital and I was assuming the OB was just overly cautious and everything was going to be okay again. There was even a point where my nurse came in to ask my preferences for certain aspects of delivery, such as pain management. This felt like a huge relief after I had pretended to rip up my birth plan when we arrived.
Well. . . Things did not go swimmingly. My doctor came in at some point after 5pm to tell me that I had three more decelerations while on pitocin and that they were going to schedule me for a C-section. It was to be 6 hours after eating. . . 8:00pm. Unfortunately, this meant I was going to the on call doctor, a stranger. I’m very fond of my doctor so this was a punch in the gut. She explained that if the baby was responding badly to this amount of contractions, it could be very dangerous to progress with labor. If nothing else, transition and the pushing phase could do serious damage to the baby.
My body did not get the memo and I continued to have regular painful contractions long after they stopped the pitocin. My nurse commented “oh you’re not supposed to be going further. . .” but I did. Nobody checked my cervix because that would be pointless. I’m thinking it’s entirely possible that the small amount of pitocin was enough to spark true labor. So, okay. I guess I might have had a few hours or labor, but that was unconfirmed and it’s not like I reached the point of extreme pain.
I did not take well to the fact I was having a C-section. I had the biggest panic attack of my life and was scared I would not calm down enough for them to be able to safely give me surgery. I also had an incredible coughing fit and was not able to drink anything to help, for fear that I would vomit and aspirate on the table.
This was my first major surgery.
8:00pm came way faster than I would have liked and they wheeled me away to the OR, alone. They were going to finish the remainder of my prep in the OR before allowing my partner to be present for the actual surgery/birth. The anesthesiologist was awesome and a real calming presence. . . in personality, not just in drug administration. Even though he was the most specialized and thus highest paid person in the room, he had the best bedside manner by far. The OB from my doctor’s office had given me a little pre-op schpiel in L&D, but he didn’t really acknowledge my existence from the point of entering the OR. The assisting surgeon? I don’t think she said a single word to me. The nurses? Nope.
After feeling the lower half of my body go numb (which is a really freaky experience), I was laid down and the curtain was pulled up. The anesthesiologist remained by my head, I guess so he could hear me if there was a problem? Anesthesia of course being the most dangerous part of surgery. My partner was brought in and I believe she said hello and words of comfort, but at this point one of the drugs was hitting hard and the next hour would be a pretty big blur.
I remember them saying my blood type several times during the procedure and later in recovery, which I thought was odd because I did not need a transfusion at any point. I didn’t know my blood type and kept making a mental point to remember, but I was so stoned. . . A-, maybe?
The two surgeons discussed vacation plans and gossiped about people who were retiring. I suppose when you’re a surgeon, chopping up a lady’s guts is just another day at the office. It still struck me as rather strange. I guess the benefit of most major surgeries is you don’t see or hear what’s normal in an OR. Hurray for just numbing my lower half!
I was incredibly shaky. The anesthesiologist blamed the OR (which yes, was quite cold), but I have a feeling one of his drugs was also to blame. We’re talking the worst shivers of my life. We’re talking shivers that persisted for about two hours, even in recovery and postpartum (sooooo, yeah, not just the OR, dude).
I kept falling in and out of consciousness and vaguely remember hearing a baby crying. I think I remember a nurse announcing the time of birth (8:28pm) and my partner repeating it to me. I think. But I also remember it not dawning on me until my partner disappeared to cut the cord and attend the measuring that holy shit that’s my baby making that sound. The baby is here and he sounds alright.
I did end up throwing up, despite all the precautions. The one medication they gave me orally to neutralize my stomach acid was ironically to blame. It was after the actual surgery and I was able to turn my head. . . But yeah, not a good time.
I kept falling asleep and waking up. This persisted until I went into the recovery room for an hour. After the baby was measured, cleaned, and swaddled, my partner returned to my side and introduced me to our son. Again, I only vaguely remember this, but I remember thinking he was beautiful and feeling immense relief.
He was 19 1/4 inches long and weighed 8 pounds, 0.2 ounces. I didn’t think to ask the apgars because I was just too stoned, but they said everything was fine, so I’m guessing they were good! The baby and I went to recovery, where they tested the baby’s blood sugar (which was a tad low and would go up after nursing). My partner was the first to do skin to skin because I was still incredibly shaky and was scared I would drop him, between my shakiness and the effect of the medication. I did it shortly after and we did manage to nurse within an hour of birth. Kid freaking lunged for my nipple. It was pretty surprising.
The cause of the decelerations, by the way? Was the cord wrapped around his neck? Nope, for all the ultrasounds checking to make sure the fluid pockets were not too large, nobody noticed that they were too damn small.
I went from recovery to postpartum for another 3 days. The rest of the stay was pretty uneventful, health-wise. We had lots of visitors. Breastfeeding was a real struggle for me and the baby, and during the last night the nursing staff announced that I had to supplement the baby’s feedings with donor milk because he dropped 10% of his birth weight. I’ve still been supplementing, but my supply has been slowly increasing because of a lot of freaking effort. I think today, we’ve given him two bottles total. One was an ounce or so and the other a mere 15mL.
Anyway, I’m not sure how to conclude this. That was the birth of Devon Rey. It was not what I expected. Recovery has not been what I expected. It’s been 10 days and I still feel pretty icky. I have to take percocet to leave the house. I still take ibuprofen around the clock. As of today, I can do most anything around the house. . . I just can’t do a lot in a row before fatiguing and/or experiencing pain near my incision.
Devon has been great and my partner and I are filled with so much love for him. My partner has been a rockstar parent and really stepped it up in the hospital. I don’t know what I would have done without her. I didn’t have to change a diaper until I got home and thank fucking GOD FOR THAT because even if I didn’t have a C-section, I’m not sure I could comfortably reach into the hospital bassinet. She did everything short of nursing the baby, which was my one job for several days. I love her more than I can express and I probably love Devon three times as much as that. So much pain. So much love. Such conclusion.
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An open letter about my anxiety
You Know Who You Are:
From as early as I can safely recall—since around the age of five years old—I have known there was something different about me. There is a specific instance where I looked at the neighbor kids playing outside and questioning why things weren’t as great as the way they used to be and missing the times where things were easy and I didn’t have a lot to care about... and I was only around five or six years old. I remember staring out the window as the sun set in the sky and worrying as to whether I would see it rise again the next day, when most children only worried about whether or not they were going to be the line leader or if they had to learn phonics that day. I remember during middle school, around the age of ten or eleven, experiencing these bursts of crippling fear that would leave me paralyzed on the floor in the fetal position—crying, hyperventilating, shaking, and being encompassed by this overall feeling of panic. It was not until high school when I was able to find a proper label for these episodes and overall feelings: anxiety.
[In 2015, this was accurate.. I have been able to be almost completely free of panic attacks for a couple years.] I am diagnosed with Panic Disorder, and I have been told that I have characteristics of Generalized Anxiety Disorder (GAD). [GAD has since been confirmed, and my Panic Disorder is now in remission.] According to the American Psychiatric Association (APA), the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria for panic disorder consists as follows:
Unexpected recurring panic attacks consisting of at least four (or more) specified symptoms (shaking, fear of “going crazy,” sweating, shortness of breath, derealization, heart palpitations, nausea, etc.)
A month or more of either or both a) fear of panic attacks or their consequences or b) a “maladaptive change” in behavior (ex: avoiding places due to fear of a panic attack occurring)
In addition, these attacks may not better be explained by the use of a substance, by another mental disorder, or by some other medical condition. In short, GAD is persistent worrying and uncontrollable thoughts of fear. After toying with various forms of medication and cognitive-behavioral methods, I was being treated solely through psychiatric treatment, which has done wonders for managing my disorder along with utilizing the techniques given to me during my time in therapy. As of today, I am actively searching for a new therapist to begin seeing regularly again.
I would like to take the opportunity to address various players within my life who have made an impact on my struggle with mental illness and to use my own story to help eliminate the stigma associated with the diagnosis of a mental illness and receiving treatment. I also intend to address the unrealistic expectations within the medical model because mental illness can only be managed and not “cured.” I do not believe in naming names, for the sake of others’ reputations, but to all of those I implicitly mention: You know who you are.
In terms of background, I used to become especially anxious when it came to meeting a boy’s friends within a relationship. Why? Well, the first time I did—in my first relationship—I was ridiculed and treated like an accessory, and to top it all off: Upon discovering I wanted to go into psychology, one of his friends actually said, and I quote, “Depression is all in a person’s head. They need to just get over it.” [Edit: the person who said that has recently gotten help for depression and is on medication. I am glad you have found your way to receiving help, and I’m sorry you were suffering in denial for so long.] To the skater boy (“she said, ‘see you later, boy’”): thank you. Without you, my anxiety would not have escalated to an all-time high, and I would not have sought out treatment. I was naive at the time: you were my best friend who weaseled his way into being my second relationship. When I refused to leave the house to be isolated with your friends because I was one negative trigger away from having an attack, I realized that something needed to change. Without your harsh verbal and emotional berating as a result of my resistance, I would have not have gotten the help I needed. I would have continued to live my life in fear of having a panic attack, while experiencing one nearly every single day. During a fairly turbulent time within my life, your negative behavior towards me lead to an ultimately positive impact that has changed my life for the better, so once again: thank you. [Edit: This part you just read is immature, but I left it in to demonstrate growth in my journey. This boy was going through problems himself at the time that he had yet to discover, and surprisingly, we ended up being more alike than we would’ve ever guessed. I hope you continue on your path of self-discovery, and hopefully find a working treatment for your bipolar disorder. Before we dated, you helped me through an incredibly tough time in my life and were always there to listen. I will forever be grateful for your friendship.]
To my sister from another family: I would like to address both you and your mom. Thank you for encouraging me to get help from a therapist. Even though you had no idea that I had a mental illness and you only encouraged grief counseling, I would have never overcome my fear of talking to my mom about seeing a professional without you. Thank you for letting me cry in your bathtub on the day I told you about my diagnosis, and thank you for being my rock. I would not be where I am today without you. You are my second family. I love you, and I am so grateful for all that you have done for me.
To my neurotic partner in crime: Thank you for being an overall inspiration to me. I would have never have sought a clinical therapist or psychiatric help if I would have never met you. The fact that you were brave enough to share your story with me and to tell me what helped you when dealing with anxiety has made all the difference within my life. Thank you for showing me the social worker who kept the conversation going and helped me conquer my fear of therapy. Without you, I would not be on the medication that keeps my brain chemistry in check, I would not have experienced cognitive-behavioral therapy, and I would continue to have panic attacks every day. Thank you for all of your advice and love and “popping pills” with me at 11:11 PM every day.
Mom: I never thought you would understand. I lived in fear for so long about going to you for help because of the social stigma surrounding mental illnesses. That infamous day during senior year of high school where I was physically shaking when I texted you about receiving help, I had anxiety about receiving help for my anxiety. I was convinced you would tell me ‘no’ or get mad or refuse to pay for treatment or tell me that it was unnecessary, but you have done exactly the opposite. I am so thankful for your support. Thank you for sitting in on my psychiatry sessions when I was still a minor and being strong when you first heard about all of the horrific symptoms your own child was experiencing. I know you had no idea… No one else did either. I kept it hidden for as long as I could.
There is no shame in receiving treatment for a mental illness. It is no different than any other disease, with the exception that the illness may not be fully recognizable by anyone walking down the street--it can be referred to as an “invisible illness.” I would like to pose a question: Would you criticize a diabetic for monitoring their glucose levels or taking insulin shots? Mental illness is a serious issue. I like to use the diabetic analogy when discussing the course of and treatment for mental illness. With Type 1 diabetes, those diagnosed have visible symptoms from the time of childhood into the rest of their lives, and with Type 2, one is genetically predisposed to potentially develop the disease, but environmental factors can play a role in whether or not the disease actually manifests. Either way, one must monitor their diet and glucose levels, take their insulin shots, and have more routine check-ups than the average person. The same is with mental illness. We cannot simply “get over it” or take a pill and feel normal again. We must use a variety of methods to manage our disease, as well as monitor our diet, exercise habits, and overall life choices. If you would not condemn a diabetic for taking insulin shots to regulate their glucose levels, then why would you condemn someone with major depressive disorder (MDD) for taking Prozac to regulate their levels of serotonin?
I will fully admit that treatment for mental illness is a tricky subject because modern psychology and psychiatry has still not perfected treatment for many disorders. With medication, it can be compared to a “guess and check” form of treatment. For me: “We’ll put you on Zoloft. It’s one of the most prescribed prescription drugs. Oh, you’re depressed now too? Well, let’s switch you to Lexapro. Not working to a maximum capacity? Well, let’s up the dosage and put you on BuSpar as well.” Cognitive-behavioral therapy (CBT) in addition is another popular method for those with anxiety to help regulate their maladaptive thoughts and in my case, find strategies to help reduce panic attacks. It is a common form of therapy to help with anxiety and for good reason. CBT focuses on changing the way one thinks in order to improve behavior as well as utilizing various relaxation and exposure techniques in order for people to more efficiently live their lives. CBT has ultimately changed my views on my disorder and has definitely improved my life tenfold.
The medical model aims to “cure” mental illness--take some magic pill or attend some therapy sessions--and everything will be okay, but I am saddened to say that it is not possible. It is wrong to think that mental illness is completely curable. Our diseases can only be managed, and even then, we have potential to relapse. In fact, only one-third of panic disorder patients achieve remission, and one in five diagnosed have unrelenting and chronic life-long symptoms. In addition, according to a study by Dr. Paul Andrews, 49% of patients who take antidepressants are likely to relapse after discontinuing treatment, in comparison to the 25% of those who have never taken medication. There are also many negative side-effects associated with taking antidepressants and attempting to taper off of them after long-term treatment. Instead, the medical model should focus on improving methods of managing the disease in order to go above and beyond the current goal of treatment: allowing clients to function in their everyday lives. We should aim for those diagnosed with mental illnesses to be able to see a brighter future and not have to worry about passing on the disease to their children. They should be able to focus on living their lives, rather than focus on being “functional.”
Another goal we should try to achieve is changing the conversation. One reason why mental illness is so stigmatized is because of the everyday vernacular used by those who are completely uninformed. Mental illness is seen as “lesser” by the rest of society because if someone is unable to find their pencil, they will say they are going to have a “panic attack.” (This was an actual instance I witnessed.) And no, you are not “ADHD” because you got side-tracked during a conversation, you are not “going to kill yourself” because you have two tests tomorrow, and that skinny girl you are referring to is not “anorexic” because of her high metabolism. The words we use carry a lot of meaning and are so important to the social aspect of how others perceive mental illness. If we do something as simple as change the words we use in everyday conversation, we can initiate a wave of change that will eliminate a stigma that affects so many people.
One in five American adults experience a mental illness within their lifetime, and 60% of this population do not receive treatment. I encourage all those who suffer from mental illness to get help because you do not have to suffer in silence. For those who are already diagnosed: speak up. If my “neurotic partner in crime” never discussed her panic attacks with me or if my “sister” never described how much therapy helped her during a tough time, I would have never sought help. We must change the conversation and share our own stories. Mental illness should not be seen as “lesser” than any other disease. If more people speak up, we will call more attention to how serious these diseases are, and more people will get help. I know that I am not alone, and I want all those who suffer to know that they are not either. Stay alive, and stay beautiful.
With love,
Stephanie
Citations for these statistics are in the original essay. This is a very early draft of my story, but here is where I was in 2015, with some future Steph commentary/updates laced in.
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Navigating Marriage When You Both Have Diabetes
New Post has been published on http://type2diabetestreatment.net/diabetes-news/navigating-marriage-when-you-both-have-diabetes/
Navigating Marriage When You Both Have Diabetes
Navigating Marriage When You Both Have Diabetes
Couples who manage together, stay together
By Lindsey Wahowiak May 2017
So many resources for couples and diabetes seem to focus on one spouse with diabetes. But what if both of you have diabetes? Real married couples give their secrets for success in navigating the highs and lows that life throws their way.
Communication
Experts will tell you that communication is key in making any relationship succeed. When two people have diabetes, the push and pull between openness and privacy can feel even more fraught, says Jenna Eisenberg, LMFT, owner and operator of Denver Diabetes Counseling and Denver Marriage and Family Therapy.
Set Boundaries
In counseling couples with diabetes—and in her own life with type 1 diabetes—Eisenberg urges patients to be honest with each other but to err toward privacy when it comes to sharing all aspects of their diabetes.
Eisenberg suggests that couples set boundaries and guidelines about diabetes early on in their relationship. Those boundaries can be modified as partners assess their needs. Asking what each person needs of the other, really listening to that response, and respecting each other’s wishes are the keys to keeping communication lines open.
The way you treat your diabetes may be different than how your spouse treats his or hers, Eisenberg says. That may mean that you have a daily check-in about your diabetes but only ask about your partner’s when you spot signs of a low. Eisenberg says concern, or even fear, can cause you to want to push a bit, but it’s important to respect each other’s wishes, even if that means leaving each other alone for an hour.
You may, for example, set a rule that you and your spouse can ask each other about blood glucose levels three times daily—but your partner only has to answer twice, as is the case with one couple Eisenberg works with. Or you may choose to not allow specifics—only to say, “I’m high but treating, thank you,” or “I’m low. Would you please get me a juice box?” Or you may choose to only intervene in the case of an emergency—such as a serious low—with a plan in place, just in case.
For Steve and Lisa Lindsey of Elizabethtown, Kentucky, setting boundaries helps them cheer each other on and gives them the space they need. Lisa, 48, was diagnosed with type 1 diabetes in 2007, and Steve, 58, developed medically induced diabetes in 2015, a result of the anti-rejection medications he takes for a double-lung transplant. “We often share our numbers, [such as] A1C, blood glucose,” Lisa says. “The only time we don’t share or help is when one is grumpy or frustrated and doesn’t want to listen to the other.”
Keep Track
You may choose to share everything. And with today’s diabetes management tools, such as apps that work with continuous glucose monitors (CGMs) to transmit glucose readings to friends and family, you can. Cassie and Jason Thompson, both 46, of Royse City, Texas, transmit their glucose levels to each other’s phones. Sharing it all makes sense for the couple, who have been together for 25 years. They both have latent autoimmune diabetes in adults, or LADA. They offer gentle nudges about self-care but ultimately give each person ownership over his or her diabetes. “If we’re together, I’ll just say, ‘Hey, do you need a juice box, or do you need something to eat?’ ” Cassie says. “Just a little gentle reminder: ‘I see your numbers are going down, what do you want?’ ”
Avoid Comparisons
Even with clear boundaries, frustrations may rise. Differences in management can lead to one person asking, “Why can’t you do things the way I do?” Eisenberg says. And that can backfire. It makes the other partner feel attacked, she says. “Even if one [person] has [a lower] A1C, or type 2 versus type 1, it’s different for every single person.” What might work for one person may not do the trick for a spouse.
Those differences can cause relationship dissatisfaction. In a 30-year review of couples with diabetes, published in December 2013 in Contemporary Family Therapy, researchers found that hiding concern for the other person, pretending that things are fine to avoid conflict, nagging, poor communication, and attitude discrepancies between spouses were indicators that couples with diabetes were suffering.
Cherise Shockley, 34, of Noblesville, Indiana, was diagnosed with LADA a decade before her husband, Scott, was diagnosed with type 2. Post-diagnosis, Scott has a better understanding of her diabetes, Cherise says, but differences still remain: She and Scott could eat the same meal, and it would affect their blood glucose differently. Those differences could be a source of competition or jealousy in a relationship with diabetes, Eisenberg says, but couples can communicate their struggles and successes to help each other keep a positive mental outlook.
Embrace the Upside
Kylee Walsh of Manchester, Connecticut, says she and husband Josh don’t get competitive. They’ve found a different way to check in on each other. “The only time we ever really compare to each other is if we have the same blood sugar at the same time,” she says. “One of us will jokingly say, ‘Meant to be together.’ ”
The Walshes say the fact that both have type 1 diabetes does more to help their relationship than hinder it. The couple met while working at the same diabetes camp and were married soon after. For the Walshes, both 30, that shared history meant the other instantly understood aspects of diabetes that required explanation with other dates. “It makes that conversation of getting to know each other that much easier when they can completely understand, not having to worry about ‘Oh, they’re going to judge me,’ ” Kylee says. “They just get it.”
Address Money Worries
Diabetes brings with it any number of stressors—and few things are as stressful as financial concerns. Diabetes is expensive to treat, so it comes as no surprise that double the costs for two people’s diabetes supplies means double the squeeze. “I don’t know what we would do without our insurance,” Kylee Walsh says, “because it’s not just Josh and I. It’s our son [who has type 1], too.”
When it comes to insurance plans, most cover insulin, diabetes medications, and durable goods such as insulin pumps. But paying for your care and supplies can still be expensive. Shana Alex Charles, PhD, MPP, a health care and insurance expert and assistant professor in the Department of Health Science at California State University–Fullerton, cautions against plans with low premiums—they may sound good, but they usually come with a high deductible. That means that while you pay less per month, you’ll pay more out of pocket before your insurance coverage kicks in. “Don’t be afraid to pay a higher monthly premium [for family coverage],” she says. “It will probably save you money in the long run.”
If you know your family will have to change insurance plans in the future, talk to your health care providers to make sure they’ll accept your new coverage. “Do as much investigation as possible, and be really open with your doctors,” she says.
Flexible spending accounts offered by some employers can help you save money on medications, doctor visits, and more. Such accounts draw money from your paycheck before taxes. To help you determine how much money to put into your flex account, add up the previous year’s medical expenses for both you and your spouse.
Health care providers who embrace technology may also end up saving you money, Charles says. Sending a text—or using a CGM that allows your provider to see your blood glucose levels in real time, for example—could save an office visit.
Setting aside money in an emergency fund can help you to feel more prepared in the event of an unexpected medical expense, a short-term disability, or something else. Financial experts generally recommend saving an amount equal to three to six months’ worth of household expenses.
Sex And Intimacy
Diabetes can cause issues at the least opportune moments, and that includes in the bedroom. Complications of diabetes can create sexual problems, but a little patience and openness can help couples keep their partnership healthy.
Understand the Issues
For men, erectile dysfunction can be a side effect of diabetes, particularly with poorly managed blood glucose, according to research published in the March 2016 issue of the journal Current Sexual Health Reports. For women, vaginal dryness led to difficulty becoming aroused and reaching orgasm—resulting in sexual dissatisfaction for almost 35 percent of women with diabetes who used insulin, and 26 percent of those who didn’t, an August 2012 study in Obstetrics & Gynecology found.
Diabetes can also mean more risk for vaginal yeast infections, making sex uncomfortable. And when sex is uncomfortable, desire disappears, says Joseph Nelson, MA, LP, CST, a practicing psychologist and sex therapist and former director of behavioral medicine services at the International Diabetes Center in Minneapolis. A healthy sex life is a vital part of a marriage, so communicating issues and desires—or a lack of them—is important.
Baby Talk
Preconception planning is essential, so if you’re not ready to have a baby, be sure you avoid unintended pregnancy. Couples, especially women, who are trying to have children are encouraged to get to health targets first. A woman’s elevated blood glucose at the time of conception can raise a baby’s risk for birth defects. In women who have very poor blood glucose management, that risk is as high as 25 percent, and the risk for complications during pregnancy is raised, too, says Aaron Caughey, MD, PhD, professor and chair of the Department of Obstetrics and Gynecology and associate dean for women’s health research and policy at Oregon Health & Science University.
Diabetes is hereditary, and a child’s risk for diabetes is greater if both parents have diabetes. There’s no definitive answer as to how much greater, but studies have found the risk to be 1 in 50 with a type 1 mother and 1 in 15 for those whose fathers have type 1.
Type 2 is more likely to be hereditary (having two type 2 parents led to a 30 percent higher risk—that’s six times the risk of someone without any type 2 parents—one study found), but Caughey urges families not to discount environmental effects. “Households tend to eat together, so the dietary and exercise habits of the parents are often passed down to the children,” he says. “So, yes, the offspring have a higher risk of diabetes, but the genetics are only a small part of the story.” Learn more about diabetes and pregnancy.
Talk It Out
“When people are experiencing sexual problems, more often than not they keep it to themselves,” Nelson says. “That means that their partner might be making some assumptions. If a man isn’t able to get an erection, maybe the partner starts to think, ‘Maybe he’s not attracted to me anymore.’ If neither one is talking about it, the distance just becomes broader and broader.” But if couples are able to talk about their issues, they can find solutions, Nelson says.
Aman Shah and Elizabeth Reyna of Bolingbrook, Illinois, have found that to be the case. Both have type 2 diabetes, and they tackle it together using metformin and healthy eating. But Elizabeth, 41, says that diabetes has had an effect on her desire, which in turn has had an effect on Aman, 60. “I want my wife to come back to me again,” he says. “That is a key factor in a relationship. If I have to find a medicine for that, I have to find a medicine. The distance can become a wall, eventually.”
Elizabeth says that confiding in her health care providers has not been helpful because they offered her brochures without discussing diabetes or its side effects, particularly regarding sex. Though the medical community has come a long way, Nelson says, some providers are uncomfortable or unwilling to discuss sexual issues. This is unfortunate because medical interventions—including medications, lubricants, techniques, and forms of stimulation—for men and women can make sex more pleasurable. If you want more help, make an appointment with a sex therapist. Start your search with the American Association of Sexuality Educators, Counselors, and Therapists (aasect.org).
Redefine Sex
Nelson suggests that couples dealing with sexual dysfunction focus on pleasure, not orgasm. Broadening your definition of sex to include other types of play can make everyone feel good and maybe even add some spice to the relationship. The Walshes, on occasion, have taken each other’s insulin pump off (though not for longer than an hour) to get things going.
Family Dynamics
For some couples, the person who has had diabetes longer—the one with “more experience”—may feel as if he or she is responsible for helping the other manage. Jane K. Dickinson, RN, PhD, CDE, is the program director for the Master of Science in Diabetes Education and Management at Teachers College at Columbia University. She’s lived with type 1 diabetes since she was 7 years old. Her husband, Randall Hannaway, was diagnosed with type 2 diabetes when they were dating. Even when one of you is a professional diabetes “expert,” that doesn’t put that person in charge, Dickinson says.
Team Up
Rather than coaching, Dickinson suggests becoming a teammate. “The way I try to do it—and I would recommend this to other couples—I say, ‘Do you want to go for a walk with me?’ ” she says. It’s a better approach than the more combative, “Are you ever going to exercise?” But it takes effort from both. “If he wants to come, it’s awesome,” she says. “If he doesn’t … that’s his choice.”
Get a Game Plan
When a couple has diabetes, they may experience simultaneous lows, with mood changes and irritability, or they both may need assistance getting fast-acting glucose at the same time. So having a plan in place is wise. For some couples, that may mean a policy of treating your own low before helping your partner. It might also mean teaching children to spot their parents’ lows. For the Thompsons, that makes sense, as their youngest son, Seth, was diagnosed with type 1 when he was 16 years old. “From the very beginning, we developed a family approach,” Cassie Thompson says. “When he and Jason got [continuous glucose monitors], he wanted me to listen for the alarm. We all just kind of listen for each other and help each other out.”
Managing together can improve relationships, some couples say. Making healthy food choices can mean more home cooking and family meals. Getting active together can lead to better health for both. Talking candidly about how you feel, and why, builds a foundation for strong bonds. And all of that improves mental health, according to a 2012 study published in the Journal of Health and Social Behavior—an important benefit because people with diabetes are at a higher risk for depression. Couples who work together can face whatever diabetes throws at them. “I think it’s brought us together,” Reyna says. “We’re more aware because we don’t want this to take us down.”
Seek Support
“Everyone thinks I’m married to Superwoman,” Scott Shockley says of his wife, Cherise. “But every once in a while she could use a little tender loving care when it comes to her diabetes.” He advises partners to be kind to each other, but the Shockleys, and many other couples, look beyond each other to find added support in managing their diabetes. Cherise is a familiar face to the diabetes online community. She runs weekly diabetes social media advocacy Twitter chats with the hashtag #DSMA. Not sure where to start? Ask your health care providers about local diabetes support groups, or visit the American Diabetes Association’s online community at community.diabetes.org.
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Reflecting on Presidents' Day 2017, Diabetes-Style
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Reflecting on Presidents' Day 2017, Diabetes-Style
Happy Presidents' Day, America.
It's time once again to mark the annual holiday established in 1885 that's meant to honor all who've held that office, past and present. And 2017 is certainly an interesting one, no?
The first month of our 45th President Donald J. Trump's term in the White House has been unlike anything we've seen before. The news coverage alone can be a stressful experience, not to mention all the social media chatter, and honestly, many are experiencing fatigue when it comes to anything related to politics and this presidency.
Meanwhile, some sarcastic folks are even calling to abolish this holiday.
And as you're reading this here at the 'Mine, you may be wondering: What does Presidents' Day have to do with diabetes, enough to warrant a full post?
Hey, if you look hard enough, there's a connection between diabetes and everything, right? Some of it's actually serious stuff, but we're also hoping to offer a little levity to offset the "heavy" state of affairs in our country at the moment.
Presidents With Diabetes?
OK, first off we wondered: Have any past presidents been pancreatically-challenged?
We haven't been able to find any evidence, but you can't rule it out completely. When Googling, this post on Illnesses in the White House came up, as did this one on presidential diseases. We also found speculation that Warren G. Harding might have been a PWD back in the 1920s, but there doesn't appear to be substantiation of that (and since it was right at the dawn of insulin discovery, the chances are likely it would not have been T1D, as people weren't surviving it so much back then).
Unlike the current British Prime Minister Theresa May who very publicly has talked about her own type 1 diabetes, it doesn't seem like there's anyone on the US presidential roster who's openly been a part of our D-Community -- though some have not been shy about admitting they had everything from thyroid disease to Chrohns Disease.
The concellation prize: Even if there haven't been any PWD Presidents, at least they've kept up the tradition of signing presidential proclamations recognizing diabetes, dating back to President Jimmy Carter's recognition of National Diabetes Week in October during the late '70s and the first proclamation by President Ronald Reagan in 1982 marking November as Diabetes Awareness Month. Here's hoping that tradition continues!
Speaking of diabetes-related policies...
The First 100 Days
Have you heard the Legend of the President's First 100 Days? It was Franklin D. Roosevelt in 1933 who first coined the term that's become a benchmark to determine how successful and effective a president will be. These early days are often seen as a time of new energy, when the freshly-inaugurated leader can take action and set the stage for policy.
Trump's first months have been a dizzying time so far... Regarding diabetes-related policy, here's just a sampling:
Drug Prices: President Trump met with Pharma execs in late January to talk medication prices and healthcare costs, and depending on the headlines you read it went one of two ways: He pushed for Pharma to lower drug prices and produce more in the US, or he took a Pharma-friendly stance on less regulation that would allow for the status quo (or even higher prices) on medications.
New Health Boss: The Senate confirmed President Trump's pick of Tom Price to lead the Health and Human Services (HHS) division, which includes CMS along with the Food and Drug Administration. Among other things, Price has echoed the Trump Administration's desire to see the FDA speed up the drug review process and has also been pretty vocal on issues related to healthcare.
Immigration Debate: Obviously one of the biggest issues is that Executive Order he signed relating to travel restrictions on those entering the US from a handful of foreign countries that are classified as dangerous. Clearly, there was confusion in rolling that policy out so quickly and it's been challenged and struck down in federal courts across the country. This has impacted our Diabetes Community through cases of doctors/researchers on the way here to practice and do research, but were barred and sent back to their home countries -- including one en route to Harvard for autoimmune disease research. The American Medical Association and the Endocrine Society asked the Trump Administration to clarify the immigration order, contending it interfered with medical professionals and students from practicing, researching, or learning here in the States. There's also been concern about how this would effect global attendance at certain diabetes events, such as the Advanced Technologies and Treatments in Diabetes (ATTD) conference held this past week in Paris, France. But from what we've been told, ATTD saw more attending from the US than last year -- meaning the travel "ban" hasn't interfered too much yet. TBD how this evolves in the coming months, especially with so many internationals coming here for the big American Diabetes Association Scientific Sessions in June.
Medicare and Medicaid: The Centers for Medicare and Medicaid Services (CMS) has vowed to put the breaks on its controversial competitive-bidding process by 2019, which is good news for our D-Community. We're hoping to see that end completely, and hoping to see a national coverage decision by CMS on covering continuous glucose monitors (CGMs) for those on Medicare... but that's all TBD given the conservative fiscal policies the Trump Administration is taking so far.
Education Chief: Another of the President's Cabinet picks was Betsy DeVos, who many in the country protested for the position of Education Secretary but managed to get in -- by a historical, first-ever tie-breaking vote by VP Mike Pence, since the Senate had an even 50-50 split. While her policy views and experience were (are) controversial, many in our D-Community took particular note of her lack of knowledge on Section 504 and the Individuals with Disabilities Education Act (IDEA), which protects children with disabilities and diabetes in schools. Whether this leads to anything big or not remains, like so mcu else: To Be Determined.
Whoa... mind-spinning isn't it (!), and that's just a small taste of everything the new president is touching right now.
Luckily, our Diabetes Community has a way to keep tabs on all of this, by following the Diabetes Patient Advocacy Coalition, or DPAC for short. This non-profit led by our friends, fellow type 1 rockstar advocate Christel Aprigliano and T2 PWD and D-Dad Bennet Dunlap.
In fact, they've even made a fun "diabetes-policy game" about these First 100 Days, challenging us to basically create our own individual advocacy plans to raise our voice on whatever particular issues we might be passionate about. The setup says it all: "We have a new Congress and a new Administration. There are many reports speculating about what they will do in their first 100 days. I am asking myself, what else can I do in the first 100 days for people with diabetes? To be effective, I’m going to need a plan."
The D-Community is invited to take part in this advocacy effort, in whatever ways make the most sense, and to share some of that First 100 Days activity on DPAC's Facebook page -- where you can also find a whole bunch of other regular updates on policy and presidential action relating to healthcare, so make sure to check it out if you haven't!
Healthcare Reform (Oh My!)
Our healthcare system needs some work! But we have to recognize that healthcare reform and the future of the Affordable Care Act (aka Obamacare) is a huge issue on which our country's sharply divided.
We appreciated that in his final days in the White House, President Obama (the architect of the ACA who achieved something no modern president had in getting this healthcare reform package passed) took time to discuss the state of affairs relating to healthcare. You can see a video of the hour-long Vox discussion here, and props to one of our own in the DOC (Laura over at @KidsFear99) who happened to get on the guest list to attend! She says it was an honor to be there, and that while insulin pricing and affordability weren't specifically brought up, you can also check out the five-minute segment starting at the 32-minute mark where healthcare costs were generally discussed.
President Trump has been less clear on his policy plans for healthcare, but recently has taken the first steps to roll back the ACA and move this forward with a Republican-controlled Congress. Aso late last week, the GOP unveiled outlines for its plan on healthcare changes. We've heard this includes a new bill that could continue to help prevent people with pre-existing conditions from being denied coverage, or from paying higher amounts than those without a health condition. All of this fuels our D-Community's concerns and passions, and everyone seems to have differing opinions based on what you read and whom you talk to.
Presidential Politics & Blood Sugars
Honestly, the more I read the newspapers and tune in to the never-ending cycle of 24 hour news coverage, the more overwhelmed I get.
I don't happen to agree with much that President Trump is saying or doing, and his personality and style are very unnerving to me. Then again, that's how Congress has been to me for many years... so this isn't entirely a new phenom. And yes, my sugars tend to go up when I focus too much on these topics, particularly on Sunday mornings when I am glued to the news shows and my morning newspaper.
It's common knowledge that stress affects blood sugars. Our weekend Q&A Ask D'Mine pointed this out in a column titled Trumping the Blood Sugar:
"Stress triggers the body’s flight-or-fight system, pumping sugar into the blood for extra energy. Low-grade, chronic stress can lead to near-continuous release of sugar into your blood stream. If you are running universally high, you may need to raise your basal insulin for, say, four years or so."
Personally, my blood sugars have jumped as much as 200 points, dancing into the high 300s at times for no apparent reason... well OK, maybe I was sometimes yelling at a certain White House leader on TV. I wonder if this is how PWDs felt back in the 70s when living through the crazy Nixon Era, yet didn't have modern tech like glucometers or CGMs to help...
Since I'm unconnected to my pump these days in favor of multiple daily doses, I manage by puffing some Afrezza inhaled insulin and have even bumped up my Tresiba basal insulin a few units leading into Sunday, just to be safe.
PWDs at the White House
In the end, especially on President's Day, it comes down to respecting the Office of the Presidency and that special house on Pennsylvania Avenue, which has been around since nearly the beginning and hosted every president since John Adams in 1800.
We're proud to report that at least a few diabetes advocates have managed to meet past presidents and get insider-access to the White House in recent years -- including D-peep Laura mentioned above who was in the same room with President Obama just this past January.
Most impressively, our friend Howard Look, the diabetes dad who founded the open-source D-data nonprofit Tidepool, was part of President Obama's Precision Medicine panel in July 2015, and was honored as one of a select few "Champions of Change" who are making a difference in transforming the way we improve health and treat disease. We loved hearing Howard's experience of shaking hands with Obama, and particularly how the two were kibitzing behind the scenes about the shared experience of being a dad.
Another good friend Anna McCollister-Slipp, a huge mover-and-shaker in the world of diabetes advocacy and policy, has also had her share of White House visits. In fact, Anna says she's been to more meetings at the White House and Executive Office Building than she can count, including five formal presidential events where four of the past presidents also attended -- George H.W. Bush, Bill Clinton, George W. Bush, and Barack Obama.
Anna tells us she actually had the chance to meet Clinton at a White House press corps party on the South Lawn in the 90s, but turned it down.
"Instead, I chose to get in line for the paragliding 'ride,' which let you take an attached parachute/balloon for a spin over the South Lawn, Ellipse, Treasury, and more," she said. "I knew that was a once in a lifetime chance!! Totally cool!"
Ha! Great story, Anna! Not sure if we'd have made the same choice, but can't say we wouldn't have, either... 🙂
All Hail, Kid President!
Just to be sure we end on a happy note -- how can you not recognize one of the greatest presidential parodies of all time, The Kid President?
Come on, you remember this handsome little tyke in a black suit who's our self-appointed president and makes fun videos to help shape kids' views of the world? Here's his backstory, btw.
We've been longtime fans, especially since his Diabetes v. Diabetes video that tackled a very important policy issue: how to pronounce diabetes! 🙂
If that doesn't bring smiles, we don't know what will... of course, Kid President also pointed out how "adults are so mean" and everyone should take a chill-pill and relax. We totally agree, and think everyone in the US (ourselves included) should follow that advice on this particular Presidents' Day.
To all who are reading today, we echo the sage advice from Kid President: "Keep Dancing, America."
Disclaimer: Content created by the Diabetes Mine team. For more details click here.
Disclaimer
This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.
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