You are currently browsing the category archive for the ‘Guest post’ category.
Have you see The Human trial, the documentary film about searching for a cure for type 1 diabetes? I saw it a while ago, and then again last week. It’s remarkable viewing.
I’m delighted to publish this guest post from Elizabeth Snouffer, freelance writer, diabetes advocate and a remarkable woman I’m fortunate to call a friend. Elizabeth wrote this review of The Human Trail just after it was released to US audiences, but I wanted to wait to share it until it could be viewed by people from around the world. Thanks, Elizabeth, for sharing your thoughts.
___________________________________________
The Human Trial documentary film is an intimate look at the overwhelming, messy, and unpredictable nature of living with type 1 diabetes alongside a similarly defined clinical trial seeking to fund and find a cure for the disease. Directors, Lisa Hepner and Guy Mossman, have painstakingly worked on their documentary film for more than a decade as Producer and Writer, and Director of Photography respectively. Abramorama released the film in theaters on June 24, 2022.
Diagnosed with type 1 diabetes at age 21, Hepner, who narrates the film, represents millions of people in the diabetes community – including families, physicians, advocates and more – who would do anything to put an end to the auto-immune condition that leads to terrible complications and early mortality.
Mossman calls his documentary an observational film and it is hard to disagree. The cinéma vérité approach allows the audience to experience the relentless burden diabetes exacts on the people it touches. In the first scene, we watch Hepner prick her finger for blood while her 3-year-old son Jack looks after the test strip in the glucose meter. He is excited but turns quiet while we observe the countdown and Jack tells his mom the result—2-9-4. Hepner brushes off her disappointment and Jack quickly moves on asking Dad to test his glucose. Mossman complies with the child’s request, but the result, 96 mg/dL is startling. The health gap between Jack’s parents is a poignant reminder of the difficult impact disease has on a family. “I’ve spent the last 30 years trying to outrun diabetes, but it’s not working,” says Hepner as she prepares for an appointment with her nurse practitioner, expressing hope to stave off retinopathy and blindness. Without adequate care for blood glucose stability, what will tomorrow bring for this young family? When the well-meaning public questions prioritizing a diabetes cure because insulin is often misrepresented as the answer, The Human Trial offers a strong rationale for funding diabetes cure research.
The film is always on the move, symbolic of the stamina it takes to both manage a chronic illness and fight for cures. From her car, Hepner asks “Why is the cure for diabetes taking so long?” and we wonder, too. Viacyte, a California Bio-tech company, gives Hepner and Mossman real-time access to film various aspects of their first clinical trial – only the sixth-ever embryonic stem cell trial in the world. It’s clear the film has moved away from the personal sphere into medical science and in a sense, the business of diabetes. We become onlookers to an employee filled conference room celebration and listen to former Viacyte CEO, Paul Laikind, announce FDA approval for the biotech’s first human clinical trial with a bio-artificial pancreas. We feel the impact of their excitement and anxiety. Will our methods work? Will we run out of money?
Trials take place across the world but Hepner and Mossman’s camera lands at the University of Minnesota where the first participants, who are high risk for acute life-threatening complications, are implanted with multiple small-format cell-filled devices called sentinels to evaluate safety and viability. Maren, aka Patient 1, suffers from hypoglycemic unawareness and seizures, and Gregory, Patient 2, is concerned about vision loss. Their ability to deal with adversity is uncanny, and their fortitude as pioneers on a surgical journey to the unknown is inspiring to watch. We observe the operating room from above as Maren and Gregory are implanted and witness the risks associated with the new therapeutic approach. They have similar questions to the Viacyte team, but the stakes are higher.
Could I be cured?
Participants in clinical trials aren’t usually given any indication of outcomes before trial completion which is understandably excruciating for Maren and Gregory during the trial. The countless surgeries and tests are grueling, and we are gripped by their resilience on the screen and our mutual desire for a positive outcome.
The Human Trial gives visibility to the invisible—the often-hidden and challenged lives of people with type 1 diabetes and the thousands of scientists and researchers working arduously to fund and discover cures. The film’s subjects are not just fighters; they have accepted how obstacles, even failures, are a part of the journey to success. I call that courage.
Please click here to see where you can watch.
Elizabeth Snouffer is a freelance writer living in New York City.
Edwin Pascoe, who works as a registered nurse and credentialled diabetes educator, has explored the uniqueness of sexual orientation (gay) among men with type 2 diabetes in his PhD thesis with Victoria University.
This is Edwin’s second post for Diabetogenic (read the first one here).
This weekend, the Mid-summa Pride March marks its 25th year of the LGBTQIA+ community and this year diabetes will be represented. Edwin invites you to participate and march in what appears to be the first-time diabetes has been represented at such an event in the world.
To get involved in this historic event and support LGBTQIA+ people with diabetes, please contact Edwin Pascoe on diabetes-education@hotmail.com.
But first, read Edwin’s post.
They say that you can’t really know what it’s like to experience a particular-group of people’s world, unless you have been there yourself. The reason is that your vantage point restricts your line of sight. You only get to see certain things and while people can explain these things to you, their gravity may remain elusive.
This line of sight is often further obscured by well-meaning comments directed at members of the Lesbian, Gay, Bisexual, Transgender, Queer, Asexual, Intersex plus (LGBTQIA+)
community, such as ‘aren’t we all the same’, which are often offered up when a person makes that leap of faith to come out as non-heterosexual to their health care practitioner.
In a sense LGBTQIA+ people are shut down in these conversations by such comments and blended into some kind of homogenised one size fits all approach: a far cry from patient centred care. To put it crudely, it’s nice not to stick out like dogs’ balls but there are times when its important, and even pivotal to explain your truth when speaking about matters as important as your health.
However, the influences among LGBTQIA+ people are so subtle and varied that they escape detection, by even the people who are affected by them – these are often described as incognizant social influences.
For many, the idea of sexual orientation having an influence on diabetes management does not make sense, so when this idea is challenged cognitive dissonance comes into play.
Cognitive dissonance is an internal psychological self-talk that serve to maintain some sort of order when beliefs are inconsistent. Internal beliefs shared by many HCPs are:
- They treat all patients equally
- Being gay (sexual orientation) is about sex practices, hence the word sexual orientation.
- Psychosocial factors influence people’s management of diabetes and so need to be considered in diabetes education.
However, these 3 factors clash and have, to this date, resulted in silence when it comes to talking about sexual orientation and diabetes as evidenced by a lack of research in the diabetes space within Australia and indeed the world. Silence, however, only serves to further perpetuate this silence.
While point 3 is true, point 1 and 2 may not be the case. In point 1, many people in my study expressed that they treat all people the same which is probably true, but does that mean the people they care for receive equitable care or equal chance of access? Review this famous picture which makes it abundantly clear that we must do different things to achieve the same outcome.
There are myriad psychosocial factors that are unique to LGBTQIA+ people with diabetes, e.g. homophobia in sport, eating disorders such as binge eating disorder found to be at higher rates in gay men and stress (including depression and anxiety) and stress related behaviour (smoking, drugs e.g. amyl nitrate effecting eye health, alcohol).
Likewise support structures among gay men are generally quite different. For straight people their family will often be there to support them when required (e.g. taking them to an appointment, motivating them to take medicines and monitor or seek help and assisting them in an emergency.) For LGBTQAI+ seeking support can be problematic as they may be estranged from their family to varying degrees; provision by religious groups are absent for many gay men; and they may disengage from the gay community if they don’t meet image ideals that can exist.
Loneliness and isolation is a problem in the LGBTQIA+ community. In point 2, the belief that the discussion of ‘gay’ is synonymous with a discussion of sex, is quite pervasive but only represents one aspect of a person’s life. This obsession with sex of gay men has been represented in a multiplicity of discourses, from different powerful institutions in society throughout history like law, religion and medicine, that have directed that conversation, including endocrinology.
A German doctor by the name of Eugen Steinach in the speciality of endocrinology performed orchidectomies on gay males in the 1920s and transplanted them with those of straight males, in the belief that homosexual tendencies were rooted in the testicles. Various barbaric gay conversion practices were carried out up until recently; while time-lines are unclear due to wide spread secrecy, we know homosexuality was removed as a mental illness in 1992 in the WHO ICD classification system.
However, 28 years on, the legacy effect of this cruel regime remains ever present in medicine as reported by various Australian studies and case reports of homophobia. There is a paucity of education within healthcare on matters of LGBQIA+ people and this is in part leading to ongoing ignorance.
In addition to this specialisation within medicine has meant that those who are well informed on LGBTQIA+ issues are usually far removed from mainstream medicine e.g. sexual health and mental health clinics, meaning possibilities for mentoring by colleagues and upskilling is reduced.
Again, LGBTQIA+ remain invisible as we don’t tend to record this information due to sensitivities around this topic. Generally, we use labels to denote difference but leave them out if they are part of the ‘norm’. This is problematic as the so-called norm is that which other things are compared to, while those labelled are counted as second to the norm – but at least they are counted. However even more frightful are those that don’t receive the reward of that label – they are the invisible.
To put it in religious terms we could refer to this last group as the dammed. Therefore, it is those of the ‘norm’ that get to decide who gets counted and who do not. For example, we talk about women in cricket, why? to denote they exist and are unique as compared to the norm which are men. However, what would it mean if we didn’t label women in cricket? Would it render them invisible and we didn’t get to see their contribution? We don’t say men in cricket.
It is common to talk about men in nursing to denote they bring a difference to nursing, normally a female dominated profession. Of course, these labels are artificial but speak to power of words in healthcare and why LANGUAGE MATTERS.
Sexual orientation labels are however judiciously applied in medicine as there is a lot of anxiety around this. Anxiety arises from HCP who fear causing offence and LGBQIA+ people themselves who fear discrimination by HCP. Anxiety is often attributed to the sexual factors and as such attempt to adjust this medical gaze must be challenged and adjusted to above the waist to encapsulate the entire person because maybe only then, the laser sharp focus on sex and the judgment that goes with this may start to dissipate? It doesn’t mean we forget sex but that this only becomes part of the whole. This is important, as both the sexual practices and the non-sexual practices of people contribute to health in diabetes.
Sexual health education in diabetes for all people e.g. male, female, LGBTQIA+ and HIV is presently only rudimentary and for some non-existent. Our sensitivities in this are harming people with diabetes.
Straight people are spared the need to come out with a label as this is the norm. They have the freedom to flow casually into and out of conversations which encapsulate topics such as relationships and sex, which gay men must first censor or even disguise if it means coming out, if they want an answer to their question.
While the topics such as erectile dysfunction may be similar between gay and straight men, the psychosocial context of these are different which HCP must be attuned to if they are to develop a therapeutic relationship, but are they? While it is clear that there are some homophobic HCPs out there, for the most it’s a lack of awareness and nervousness about how to navigate this field.
Although it’s unclear why, in my study, gay men with type 2 diabetes attended allied health services 50% less than the general population in Australia e.g. diabetes educators, dieticians and endocrinologist. In addition to this those who didn’t attend, displayed an increase in complications and a trend towards glucose levels outside the range. This highlights 2 things here, one is that multidisciplinary care works and secondly that gay men disengage from these services that can help. Allied health needs to explore ways to better engage LGBTQIA+ people through education and further research.
Grumps in Australia last month. (He’s on the left.)
In a former life, I was a music teacher. It was always very clear to me that there was no one way to teach that worked for all kids, and there was a need to somehow tailor my teaching style to meet the kid standing in front of me.
A common cry in diabetes is that no one size fits all when it comes to diabetes management or treatment plans. Surely, that same idea extends to diabetes education.
Today, Grumps is back at Diabetogenic with his next #WWGD post, (which is good because I am far too busy eating my way around Italy). He’s talking about learning styles when it comes to diabetes, and what works for him.
Take it away, Grumps. (I’ll just go back to slurping through this lemon granita…)
______________________________________
Since being diagnosed back in the dark ages, when there was no internet and my BG check was called a ‘BM test’, I have had to learn medical stuff.
I’m OK with that.
I mean really OK.
I just see my body as the vehicle that I have in order to drive my way through life, to get to the places that I want to be. As I get older this vehicle that I live in gets a bit more banged up. Bits of it get damaged or fail. Hopefully my gear stick never falls off…
I do, of course, have the luxury of age. Diagnosed at the age of twenty-five, it was easy for me to accept immediately, and I just needed to know what manual things I needed to do to compensate for the glitch in my engine management system.
Queue the learning of medical stuff. Constant learning of some quite complicated and detailed stuff.
So, this is where my issues lie. I’m no great student. I have the attention span of a…
I don’t learn well by reading, or listening so if you want me to learn that way, then keep it brief and use simple and short words.
Ah…
That’s not really how medical stuff is written, now is it?
Over the years, I’ve learned a lot about my diabetes, with most of that learning in the latter years with the advent of the internet, social media and good old You Tube. As a visual learner, these have really helped.
Now, these days I’ve had to learn more medical stuff. Different stuff. All about my foot and associated diabetes-related complications, (I know, I don’t mention it often…), and the other day I got the results sent through of my latest MRI scan, packed with medical stuff…
Errrrmm. What?
Faced with all these words and terms… (I know, it’s taken a while to get to this right?)… ‘What Would Grumpy Do?’ (#WWGD)
In a word. Pictures!
A bit of Googling, a bit of fiddling and it all starts to make sense to me.
I sent it to my podiatry team. They liked it and are considering adopting it as an idea for explaining foot issue to the people that are living with them.
I have learnt over time that this is the best way for me to understand all of this medical stuff, which means that I can do what I need to keep this vintage vehicle on the road.
Maybe a person’s learning style should be assessed and understood at diagnosis in order to ensure that all of the information that we need to absorb is given to us in the way we need it to be?
Our diabetes may vary. So does the way we learn.
Live Long and Bolus!
Grumps
You can get more from The Grumpy Pumper by checking out his blog here. And following him on Twitter here.
As National Diabetes Week activities began, I kept a close eye on the Twittersphere to see just how the week was being received. Pleasingly, there were a lot of mentions of the #ItsAboutTime campaign, and I set about retweeting and sharing activities by others involved in the week.
One tweet, from Edwin Pascoe, caught my attention:
Edwin Pascoe is a registered nurse and credentialled diabetes educator in Victoria. He is currently undertaking a qualitative study as part of a PhD at Victoria University into the lives of gay men and type 2 diabetes in the Australian context. Data is collected but analysis is underway.
I read Edwin’s tweet a few times and realised that he is absolutely right. I can’t think of ever seeing anything to do with any diabetes campaign that addresses the specific issues faced by LGBTI people with diabetes. So, I reached out to Edwin and asked if he would like to write something for Diabetogenic. I’m so pleased he did.
One of the criticisms of diabetes representation in the media is that it lacks diversity. I completely agree with that sentiment. Because while we certainly may share stories, we also need more voices and more perspectives, and come to understand that there are different, unique and varied experiences and issues faced by different groups.
I’m thrilled to feature Edwin’s post today, and am so grateful that he took the time to write it.
__________________________________________________
CDE, Edwin Pascoe
Diabetes is a chronic condition that is managed in the context of people’s lives and this fact has been increasingly recognised by peak bodies in diabetes within Australia such as Diabetes Australia, Australian Diabetes Society, Endocrinology Society of Australia and The Australian Diabetes Educators Association.
Diabetes education has therefore become not just about defining diabetes and treatment for people but exploring how people with diabetes manage these things in context. Creating the freedom and space for people to speak their truth will allow health practitioners to explore appropriate solutions that are congruent with the person with diabetes needs.
The following will cover some of this context and how sexual orientation may influence diabetes.
Context is everything
The context of lesbian, gay, bisexual, transgender and intersex (LGBTI) persons has not been recognised formally by these same peak bodies in diabetes specifically. Arguments shared informally have suggested that what people do in bed does not affect diabetes and considering we have full equality under the law why would it matter. Further to this health care professionals (HCPs) have suggested none of this worries them as all people are treated the same, but herein lies the problem as:
- Not all people are the same.
- LGBTI people are still not fully recognised under the law in Australia despite the recent success in Marriage Equality. For example religious health care services and schools are permitted under law to fire or expel anyone that does not follow their doctrines. In some states gay conversion (reparative therapy) is still legal despite the practice having been shown to cause significant psychological harm. It is also important to note that it was only quite recently that the last state Tasmania decriminalised homosexuality in 1997 so this is in living memory.
- The law is not the only determinant of social acceptability but is entrenched in culture (we know this from numerous surveys that have seen the up to 30% believe that homosexuality as immoral (Roy Morgan Research Ltd, 2016)). Law changes have only meant that in part hostilities have gone underground.
- The focus on sex or what people do in bed fails to see people as whole and often lead to false claims of promiscuity in LGBTI people. There are also assumptions in relation to what people do in bed for example anal sex is one of these stigmatised practices. In reality not all gay men practice this and a significant percentage of heterosexual people do engage in anal sex.
Reports from the Centre for Disease Control and Prevention in the USA identified that 44% heterosexual men and 36% of heterosexual women have engaged in anal sex (Chandra, 2011). Mild displays of affection such as holding hands and leaning into each other engaged routinely by heterosexual couples are heavily criticized when observed in same sex attracted people causing LGBTI people to self-monitor their behaviour. If they choose to engage in this behaviour it is often considered and calculated rather than conducted freely.
The result of this is that there is a lot of awkwardness around the topic of sexual orientation for both the HCP and LGBTI person, something not talked about in polite company. This means that rather than talking about their health condition in context there is tendency to talk in general terms if they are recognised as LGBTI, or they are assumed heterosexual until the person outs themselves during the consultation.
However outing oneself can be an extremely stressful experience as, despite good intentions by HPCs, LGBTI people may still be fearful and remain silent to the point of even creating a false context (a white lie to keep themselves safe). It has been a known practice among some LGBTI people that some engage in the practice of ‘straightening up’ the house if they know HPCs or biological family members are coming to their homes, to again keep themselves safe. This is not to say that all situations are this bleak but that for some at least it is. Does this prevent people from seeking help in the first place when required?
Studies on rates
In the USA Nurses’ Health Study, it was noted that the rates of diabetes in lesbian and bisexual women was 27% higher (Corliss et al., 2018). Anderson et al. (2015)examined electronic records for 9,948 people from hospitals, clinics and doctors’ offices in all 50 states (USA). Data collected included vital signs, prescription medications and reported ailments, categorised according to the International Classification of Diseases diagnostic codes (ICDs). They found that having any diagnosis of sexual and gender identity disorders increased the risk for type 2 diabetes by roughly 130 percent which carried the same risk as hypertension. Wallace, Cochran, Durazo, and Ford (2011), Beach, Elasy, and Gonzales (2018)also looked at sexual orientation in the USA and found similar results.
However one must consider the country in which this data was collected as acceptability of diverse sexualities and differences in health care systems do make a difference. In a study within Britain the risk for type 2 diabetes was found to be lower than the national level (Guasp, 2013). In Australia the rates of diabetes in a national survey came out as 3.9% in gay men in 2011 (Leonard et al., 2012)and this was the same as data collected by Australian Bureau of Statistics (2013)for that year (they did not differentiate between types).
Life style factors
Life style factors such as exercise and food consumption are important to consider as these are tools used to manage diabetes. Studies have found significant level of homophobia in Australian sport that prevents participation(Erik Denison, 2015; Gough, 2007)and that there are elevated levels of eating disorders including binge eating disorder in LGBTI people (Cohn, Murray, Walen, & Wooldridge, 2016; Feldman & Meyer, 2007).
Qualitatively, a study was conducted in the UK/USA by Jowett, Peel, and Shaw (2012)exploring sex and diabetes, and in this study one theme noted was that equipment such as an insulin pumps put participants in a position to have to explain and the fear they were being accused of having HIV.
Stories
The following two stories may help give context to how sexual orientation has influenced these two people’s lives.
The first story is regarding a gentleman who came to see me for diabetes education for the first time who had lived the majority of his life hiding his sexual orientation due to it being illegal. During the consultation I was trying to explore ways to increase his activity levels in order to improve blood glucose levels, strength and mental health. He advised he didn’t like going for walks even if it was during the day in a built-up area as it was dangerous. When asked to explain this he said he feared being attacked due to his sexuality as he felt he looked obviously gay, but I didn’t see that.
A second story later on was from an elderly lesbian woman who was showing me her blood glucose levels. I noted her levels were higher on Mother’s Day, so I obviously asked what was going on there. She bought out a picture of her granddaughter from her purse which immediately bought a tear to her eye. She said her daughter had a problem with her sexual orientation and so stopped her from seeing her granddaughter, and that it had been two years since she had seen her.
It’s only the start
It is important to note that each letter of the LGBTI acronym has their own unique issues with regard to diabetes. I have mainly talked about gay men here as this is what my study covers but there are studies on transgender people (P. Kapsner, 2017), increased rates of diabetes in people with HIV (Hove-Skovsgaard et al., 2017)and of course many others. In Australia we don’t routinely record sexual orientation, only in areas of mental health and sexually transmitted diseases, and as such data is lacking in this area. It’s time to be counted and there is a need to learn new ways to improve engagement for LGBTI people with diabetes.
References
Anderson, A. E., Kerr, W. T., Thames, A., Li, T., Xiao, J., & Cohen, M. S. (2015). Electronic health record phenotyping improves detection and screening of type 2 diabetes in the general United States population: A cross-sectional, unselected, retrospective study.
Australian Bureau of Statistics. (2013). Australian Health Survey: Updated Results, 2011-12. from http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/4338.0~2011-13~Main%20Features~Diabetes~10004
Beach, L. B., Elasy, T. A., & Gonzales, G. (2018). Prevalence of Self-Reported Diabetes by Sexual Orientation: Results from the 2014 Behavioral Risk Factor Surveillance System. LGBT Health, 5(2), 121-130. doi: 10.1089/lgbt.2017.0091
Chandra, A. (2011). Sexual behavior, sexual attraction, and sexual identity in the United States [electronic resource] : data from the 2006-2008 National Survey of Family Growth / by Anjani Chandra … [et al.]: [Hyattsville, Md.] : U.S. Dept. of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, [2011].
Cohn, L., Murray, S. B., Walen, A., & Wooldridge, T. (2016). Including the excluded: Males and gender minorities in eating disorder prevention. Eating Disorders, 24(1), 114-120. doi: 10.1080/10640266.2015.1118958
Corliss, H., VanKim, N., Jun, H., Austin, S., Hong, B., Wang, M., & Hu, F. (2018). Risk of Type 2 Diabetes Among Lesbian, Bisexual, and Heterosexual Women: Findings From the Nurses’ Health Study II. Diabetes care, 41(7). doi: https://doi.org/10.2337/dc17-2656
Erik Denison, A. K. (2015). Out on the fields.
Feldman, M. B., & Meyer, I. H. (2007). Eating disorders in diverse lesbian, gay, and bisexual populations. International Journal of Eating Disorders, 40(3), 218-226. doi: 10.1002/eat.20360
Gough, B. (2007). Coming Out in the Heterosexist World of Sport: A Qualitative Analysis of Web Postings by Gay Athletes. Journal of Gay & Lesbian Psychotherapy, 11(1/2), 153.
Guasp, A. (2013). 2013Gay and Bisexual Men’s Health Survey. Retrieved 09/07/2018, 2018, from https://www.stonewall.org.uk/sites/default/files/Gay_and_Bisexual_Men_s_Health_Survey__2013_.pdf
Hove-Skovsgaard, M., Gaardbo, J. C., Kolte, L., Winding, K., Seljeflot, I., Svardal, A., . . . Nielsen, S. D. (2017). HIV-infected persons with type 2 diabetes show evidence of endothelial dysfunction and increased inflammation. BMC Infectious Diseases, 17(1), 234-234. doi: 10.1186/s12879-017-2334-8
Jowett, A., Peel, E., & Shaw, R. L. (2012). Sex and diabetes: A thematic analysis of gay and bisexual men’s accounts. Journal of Health Psychology, 17(3), 409-418. doi: 10.1177/1359105311412838
Leonard, W., Pitts, M., Mitchell, A., Lyons, A., Smith, A., Patel, S., . . . Barrett, A. (2012). Private Lives 2: The second national survey of the health and wellbeing of gay, lesbian, bisexual and transgender (GLBT) Australians.
- Kapsner, S. B., J. Conklin, N. Sharon, L. Colip; . (2017). Care of transgender patients with diabetes. Paper presented at the European Association for the Study of Diabetes, Lisbon Portugal http://www.abstractsonline.com/pp8/#!/4294/presentation/4612
Roy Morgan Research Ltd. (2016). “Homosexuality is immoral,” say almost 3 in 10 Coalition voters [Press release]
Wallace, S. P., Cochran, S. D., Durazo, E. M., & Ford, C. L. (2011). The Health of Aging Lesbian, Gay and Bisexual Adults in California. Policy brief (UCLA Center for Health Policy Research)(0), 1-8.
I caught up with Grumps a couple of weeks ago in London and bored/annoyed him to death with requests for him to write for me again. Success! Off you go, Grumps…
___________________________________________________________
A couple of weeks ago I was lucky. Lucky that my great friend Renza was in the UK. Lucky that we had time to catch-up. Lucky that JDRF UK invited us both to talk with their staff about #LanguageMatters & #TalkAboutComplications.
Smiley / Grumpy
One of the questions during the session was around how can we get the language matters message out to healthcare professional?
Renza gave her view. I can guarantee that it was brilliant and articulate. But if I’m totally honest, (which I can be now, with her back on the other side of the world again), I wasn’t totally listening.
I’m shit at multi-tasking you see. In fact, I struggle with single tasking most days.
You see I was thinking (another thing I struggle with….)
It’s easy (relatively) to get the message out to my diabetes team:
- Discussions
- Position statements.
- Frowns and a raised eyebrow at the required time.
But what about my extended team?….. How would I do this?
What Would Grumpy Do?
Basically, I did what I often do, (which pisses people off).
I answered with a question.
- ‘Who is in my HCP team?’
- ‘How many HCPs are in it?
- ‘Do I see the same HCP every time?’
Ok. That’s three questions. (I’m also shit at maths.)
I’d kind of inadvertently got a head start on this one because at the beginning of my foot ulcer treatment (fucking ages ago), I considered how joined up my care would be.
Don’t get me wrong. Each team is fantastic and the care is brilliant. It’s not joined up, though.
My brain works, (when it actually works), in pictures. So, I mapped this out:
Grumps’ brain drew this.
There are a lot of HCPs involved here, in several locations and different fields of expertise. The only person present at every single appointment and meeting is me.
So, I am the one best placed to ensure that my care is joined up. In which case, I am best placed to ensure that I am talked to in a consistent way, using the language that I am personally comfortable with.
I’m not saying that its easy. I am saying that it’s my responsibility to try.
The best manager I ever had used to tell me: ‘What you permit, you promote’. If you let people treat you in a way that you do not like, it validates it to them.
Live Long and Bolus!
Grumps.
Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here.
Look who’s taken over Diabetogenic again! Grumps is back to share some wisdom about how he deals with hypos.
We know that when it comes to diabetes, there is the advice we’re given by HCPs. And then there is real life. I wrote about my ’reality versus what I was told’ when it comes to lows a few years ago, and today, Grumps is sharing his wisdom in the latest instalment of #WWGD.
________________________________________
About ninety mins after lunch today my BG started to drop.
It was a nice slow decline so having checked my insulin on board I decided to do bugger all about it and see what happened.
It kept on its slow decent until at about 6.0 mmol/l the carbs on board stalled and it decided to do an impression of a flying hippo and dropped like a stone.
What’s the advice for treating hypos?….
- 15g carbs
- Wait 15 minutes
- BGL check
- If “blah, blah, blah”……
Load of bollocks!
Hypo hunger kicks in.
So……
- 4 Twix bars
- 2 Twirl bars
- A pre-emptive bolus and…..
- Falling asleep on the toilet and waking myself snoring….
I land at 8.6mmol/l just in time for dinner!
Live Long and Bolus
Grumps
Want more from The Grumpy Pumper? Of course you do! Check out his blog here. And follow him on Twitter here.
Grumps in Vienna
‘Grumps? Grumps? When are you writing for me?’
Last year, The Grumpy Pumper wrote a couple of posts for me in what was going to be semi-regular series called What Would Grumpy Do? Actually, the idea that it was going to be a semi-regular thing was news to Grumps, and because he doesn’t like to be told what to do, it’s been over a year between posts.
Earlier in the month we were in Abu Dhabi at #IDF2017 together, and every second thing I said to him was a variation of ‘When are you writing for me again? Grumps? Grumps? Grumps? Hey, write something. Now! Grumps?’ As it turns out, four days of me asking the same thing yields results. Who knew?
So here’s Grumps’ recent diabetes complications story. and his efforts to get people talking about complications to reduce stigma.
Off you go, Sir Grump-a-lot…
____________________________________________________
‘I’m afraid you have a diabetic complication Mr Pumper.’
(I’ve had the language matters talk, don’t panic)
How would you feel if you heard this? What would you do?
Well, at that point in time, I asked myself: What Would Grumpy Do?
To set the scene…
I had a bloody great hole in my foot.
I was at the podiatrist.
So, let’s face it, I did not fall off the chair in shock.
The conversation went something like this:
Grumps: What kind of complication? You can tell me straight. It’s my foot, right?
(Cue eye rolling by podiatrist. I don’t blame her. Dealing with me is a challenge at the best of times.)
Podiatrist: Yes. It’s an ulcer.
Grumps: Caused by the blister I told you about that burst, healed over but must have had some crap in the wound?
Podiatrist: Yes, that’s it.
Grumps: So it’s caused by my diabetes then?
Podiatrist: Oh no, not the blister, but your neuropathy means it will take longer to heal.
Grumps: So that big hole in my foot isn’t a complication of my diabetes; it’s complicated by my diabetes?
Podiatrist: Well. I guess so…
Me being me, I don’t care what it’s called, nor how I’m told, because if I’m totally honest it doesn’t bother me. Not much does. I’ll take whatever comes, deal with it and move on.
But I wanted to make a point. Things can be viewed very differently depending on who you are and how you feel about things. And how you feel about things can depend on how things are worded – that can massively influence things.
Anyway, to cut a short story long, a precautionary X-ray and a consultant later it was confirmed that there was no bone infection, which was good. It also showed that about a year ago I had broken two bones at the top of my foot and also smashed the joint in one of my toes – fuck knows how. (I remember a lot of swelling in the foot and bruising.)
Instead of healing, the bone had degenerated and gone ‘chalky’. Over time that hardened and went back to solid bone (as I understand it). So the toe joint isn’t a joint now, and the foot is slightly warped (just like my sense of humour). The Charcot (the chalky thing) is no longer active, but I am at risk of it happening again if I get another trauma to the foot.
All of which is good!
Why the hell would I think any of that was good?
The hole in my foot uncovered all the other stuff, so to be honest, I’m glad I got it. If I hadn’t, I would still not know. The Charcot isn’t active so there is nothing that needs to be fixed. I now know that if I get similar symptoms, or become aware of any trauma, I need to get it looked at ASAP. And I know the route to make sure that happens.
So, all good in my book.
I went home and did what any self-respecting Grumps would do: I waited until it was dinner time in the UK and then posted a gross picture of my foot for all to see. I described the issue and raised the subject of my complications.
This sparked a very good online discussion about compilations with other PWD talking about theirs and others seeing that they are not the only one with them. And there is no shame in having them. Sharing experiences and taking comfort from others; for me, that’s what peer support is about.
We are all in the same boat. It’s just that the boat is full of holes. If we try to bail out the incoming water on our own, at some point we will drown. It we help each other; we can keep our heads above the water.
I am not ashamed about my complications. I never will be!
I will Grumpily tell everyone that wants to listen, and post disgusting pics that pop up on your social media feeds just as you are about to tuck into your favourite meal.
I’m not sorry about this!
Complications are a hazard of what we have.
Not a failing of what we do.
#TalkAboutComplications
Live Long and Bolus
Grumps
Grumps’ snazzy new footwear.
Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here.
I get to meet some pretty awesome people with diabetes around the globe. At EASD I caught up with Cathy Van de Moortele who has lived with diabetes for fifteen years. She lives in Belgium and, according to her Instagram feed, spends a lot of time baking and cooking. Her photos of her culinary creations look straight out of a cookbook…She really should write one!
Cathy and I were messaging last week and she told me about an awful experience she had when she was in hospital recently. While she wasn’t the target of the unpleasantness, she took it upon herself to stand up to the hospital staff, in the hope that other people would not need to go through the same thing. She has kindly written it out for me to share here. Thanks, Cathy!
______________
‘Good day sir. Unfortunately we were not able to save your toes. There’s no need to worry though. We’ll bring you back into surgery tomorrow and we’ll amputate your foot. It won’t bother you much. We’ll put some sort of prosthetic in your shoe and you’ll barely notice…’
I’m shocked. Still waking up from my own surgery, I’m in the recovery room. Between myself and my neighbour, there’s no more than a curtain on a rail separating us. I feel his pain and anxiety. He is just waking up from a surgery that couldn’t save his toes. This man, who is facing surgery again, leaving him without his foot. How is he gonna get through this day? How will he have to go on?
The nurse besides my bed, is prepping me to go back to my room. I tell him I’m shocked. He doesn’t understand. I ask him if he didn’t hear the conversation? His reaction makes me burst into tears.
‘Oh well, it’s probably one of those type 2 diabetics, who could not care less about taking care of himself.’
I’m angry, disappointed, sad and confounded. I ask him if he knows this person. Does he know his background? Did this man get the education he deserves and does he have a doctor who has the best interest in his patient? Is he being provided with the right medication? Did he have bad luck? Does he, as a nurse, have any idea how hard diabetes is?
The nurse can tell I’m angry. He takes me upstairs in silence. My eyes are wet with tears and I can only feel for this man and for anyone who is facing prejudice day in day out. I’m afraid to face him when we pass his bed. All I can see is the white sheet over his feet. Over his foot, without toes. Over his foot, that will no longer be there tomorrow. I want to wish him all the best, but no words can express how I feel.
What am I supposed to do about this? Not care? Where did respect go? How is this even possible? Why do we accept this as normal? Have we become immune for other people’s misery?
I file a complaint against the policy of this hospital. A meeting is scheduled. They don’t understand how I feel about the lack of respect for this patient. They tell me to shake if off. Am I even sure this patient overheard the conversation? Well, I heard it… it was disrespectful and totally unacceptable.
Medical staff need to get the opportunity to vent, I totally agree. They have a hard job and they face misery and pain on a daily basis. They take care of their patients and do whatever is in their power to assist when needed. They need a way to vent in order to go home and relax. I get that. This was not the right place. It was wrong and it still is wrong. This is NOT OKAY!
He’s back! The Grumpy Pumper has returned to Diabetogenic to share some of his wisdom and wit. If you’ve ever wondered what a Grumpy Xmas looks like, here you go!
It’s almost bloody Christmas again.
A time for joy and happiness.
I hate it!
I remember Christmases before I was diagnosed:
Turkey dinner
Beer
Mince pies
Beer
Cake
Beer
Whiskey
Chocolate
Whiskey
Whiskey…
But now I have Type1 Diabetes!
So how does Christmas look now?
Turkey dinner
Beer
Mince pies
Beer
Cake
Beer
Whiskey
Chocolate
Whiskey
Whiskey…
I’m not going to let some condition that I just happen to have ruin the bits of Christmas that I actually like.
A few more BG checks to keep an eye on progress.
A bit more insulin when needed.
Then repeat for New Year’s Eve.
So whether you will be waiting for Big Ben to give you a bong, or your balls to drop in Times Square, enjoy Christmas. Here’s to 2017. And bollocks to ‘betes!
Live long and bolus,
Grumps
Festive as ever.
Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here.
Today, The Grumpy Pumper has taken over Diabetogenic. That sounds like it was a hostile move, however, the truth is it’s just to shut me up, because every time I speak to Grumps, I tell him he needs to get back to blogging. He may not know this yet, but today’s post is the first of what is going to be a regular (maybe semi-regular – no pressure!) feature, where Grumps is going to share his own brand of diabetes wisdom. It will be called #WWGD.
For a most authentic experience, it’s best to read his words with a frowny, grumbly expression while drinking beer. Sprinkle generously with expletives. Over to you, Sir Grump-A-Lot…
I’ve not blogged for almost six months (stop cheering).
Why not? Basically, I have sod all to blog about!…
You see, I have a special type of diabetes: Type B…Boring Diabetes
I’m lucky to have it. Nothing much changes. No dramas. Just the same most days.
Although, my life has changed recently: new job (well 4 month contract) away from home (140 miles away).
As a result, I’m staying in hotels (crap ones) 4 nights a week.
I’ve been doing it for 4 weeks now, and last night I realised that no one there knows I have T1D.
I don’t share my CGM data with anyone; I hardly ever wear it anyway. I don’t check in with the family so they know if I’m ok. (I never did before DX; I’ve never have done since DX if I’m away.) They have never been involved in my management in any way (my choice).
So…am I stupid (hands down people), confident, or just lucky? I’m lucky I have full hypo awareness still, for sure.
Having asked myself ‘What do you want to change about this all’, I replied to myself – (yes, I know that’s not normal. I like that it’s not normal) – ‘Nothing’.
Okay, I actually replied ‘Fuck all’ but that’s too rude to type…
I don’t want or feel the need to change anything. It’s how I do things. It works for me and my family.
If and when my diabetes gets to be less lazy I may need to change things, but not this day.
So if you ever find yourself wondering or worrying how to handle things, then ask yourself: ‘What Would Grumpy Do?’ And then do the complete opposite. Grumps is a bit of a knob and doesn’t take life very seriously.
Live long and bolus,
Grumps
Grumps low-carbing in Munich.
Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here.
Diabetogenic 