Thursday, 9 January 2014

How Others See Me and How Do I Think They See Me

This is a post in response to a question in the low testosterone section.  Someone is concerned about their friend who has T1D and numerous lows, sometimes as low as 27.  They have questions about how insulin works, etc.  I am basically looking at this as how I would want to be approached by a concerned friend while also providing some education.  I can't give any medical advice but I can write about my personal experiences and how I would like to be treated if this was me.  Also, based on feedback from the diabetic community in general I am just going to write a little about how PWD feel judged by society for things that are sometimes out of our control.

If my sugar gets down to a level anywhere near 27 I should be pretty concerned but may not have the mental capacity in that state to realise I should be A.) testing my sugar B.) be doing something to raise my sugar.  I would imagine if I was at 27 I would be going to the hospital.  

If I ever had a vacant look or catatonic look I would want my friends so just ask me if I have checked my sugar.  Maybe suggest that I have some juice or pop.  NEVER inject my insulin for me.  EVER.  Now, I wouldn't appreciate my friends always asking me this sort of thing, only if I appeared abnormal.  Diabetics tend to feel judged when it comes to their numbers because society is told Type 1 Diabetes is "manageable" which it is, it is just extremely challenging and the body doesn't always co-operate.   

I use Humalog for my meal time insulin and it starts working about 15 minutes after I take it.  It continues working for approx 3-4 hours depending on certain factors.  Now sometimes diabetics accidentally "insulin stack", that means take their insulin with a meal, get hungry an hour later and have a snack and take more insulin, at this point there is more "insulin on board" than normal.  This is not a good thing.  This may also be causing the diabetic to start to already go low and then they have another snack and more insulin because they are in a confused state.  This sort of thing is easy to let happen.  I have also had one severe low where I took my breakfast insulin and forgot to eat.  These sorts of things just happen sometimes.  Also, in the summer, if it is hotter, insulin can work quicker.  Even the weather affects insulin!  I know that my insulin requirements go down about 25% in the summer because of the heat.  This can vary day by day.  That is just one example of how sensitive and erratic my body is to insulin.

I know that people without Type 1 Diabetes don't understand that when someone is low they are not themselves.  Please remember that when dealing with your friend if he gets very angry, sad, volatile, not himself, etc that could be a sign his blood sugar is low or high.  My emotions go crazy when I am low.  If I freak out it is a guaranteed cue for my wife to ask me to go test my sugar, 99 times out of 100 I am low.  The other 1 I am being an idiot/jerk.

As far as my thought process and cognitive ability go when I am low; if my sugar is around 70 I feel like I have had a few drinks, if it is around 40 I would feel like I have had a case of beer and a few shots for added measure.  I probably would not remember that low the next day.  That is really the only thing I can compare it to that most people would understand.  For me sometimes with my hypoglycemic episodes (lows) my vision actually looks like a drugged persons vision on some thriller TV show.  You know the shaky camera work, the breathing, the confusion.  It can be scary. 

To be clear, these sorts of lows are really rare for me.  I am lucky, I usually catch them around 70 and have a small can of Coke and I am good.  Other people have more trouble recognizing their lows, this is called hypoglycemic unawareness and this is more common in people who have had T1D for years.  As the body has more lows it can get more insensitive to them and they are hard to recognize.   You may want to look this up, I am sure you would learn lots and it would be very helpful to you in possibly understanding your friends situation.

Having Type 1 Diabetes is a very mentally demanding.  The sad fact is that my life depends on me doing numerous mathematical equations everyday and sometimes doing them while not all there mentally.   This is no different than anyone else with T1D.  With the exception of children whose parents have to make those calculations and I am sure that takes the pressure to a whole new level! 

All of this said if you are that concerned about your friend (which you probably should be seeing as he is requiring that much emergency medical attention) you should maybe try to have a chat with him.  See if he is ok with you asking him what his sugars are if he is appearing erratic.  Ask him where he keeps his sugar in his home.  Where does he keep it when he is on the go?  In his pocket?  Bag?  Does he have liquid glucose available?  If so where does he keep it?  What other emergency measures does he have?  Does he have a medic alert bracelet, chain, watch, tattoo, etc. for when friends are not around?  Ultimately it is up to him with how comfortable he is sharing his health situation.  Everyone is different and everyone should make their own choices based on their comfort level but having your friends know where you keep your emergency sugar is a must. 

Don't be offended with his response but please tread lightly.  PWD (people with diabetes) tend to be pretty defensive when it comes to this sort of stuff (by this sort of stuff I mean anything diabetes related) but it is only because we often feel judged for our condition.  I often hear people say that someone "wasn't taking care of themselves and their diabetes" and X happened to them, as if that person wasn't even trying or they got exhausted from trying (Diabetes Burnout, another good thing to perhaps look up).  I am certainly not saying this is you.  At all.  You are obviously a concerned friend but PWD hear those sorts of comments all day from strangers, acquaintances, TV shows, etc. So, when someone they actually care about brings up any aspect of their diabetes they can feel even more judged.  "Great, society thinks I am not taking care of myself and now my friends do to." 

Tuesday, 21 May 2013

Low Testosterone and Diabetes Update

So for some reason it seems that low testosterone and diabetes seem to be related.  I have spoken before about my issues with low testosterone and diabetes. 

It seems that my Dr. and I have found something that actually works.  I now take 1.5 ml per week, every week.  This has raised my testosterone up to a normal level and I have noticed an improvement in my energy.  As a Type 1 Diabetic it sucks to have to take another needle but it is not that bad.  I figure I already take about 30 needles per week so what is one more. 

I am happy that it seems we have this sorted out... now if we could get my thyroid figured out I would be happy.  It is interesting how all of these things are connected.  Insulin, testosterone, thyroid, etc.  I guess it just proves how complicated diabetes can be and how little we actually know about the disease.

Thursday, 16 May 2013

DBlog Week: Accomplishments Big and Small

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

It has been almost 2 years since I have been diagnosed with Type 1 Diabetes.  Dealing with this change has been an extreme challenge for me.  By far the biggest accomplishment for me has been overcoming my fear of needles.  I had a fear of needles.  A paralysing fear of needles.  When I was in kindergarten we had a field trip to the hospital and they gave a fake needle to a teddy bear.  I feinted.  And puked.  From a fake needle on a stuffed animal. 

I now take 4 or 5 needles a day while also getting 1 giant testosterone needle per week.  I also poke my finger 8 times a day.  This is a huge accomplishment for me. 

Wednesday, 15 May 2013

D-Blog Week: Diabetes Memories

By far the most memorable day of my diabetic journey (had to say it) was the day I was diagnosed.  That day happened about two weeks after I was admitted to the hospital.  It was August 2011 and my wife and I had just got back from Italy. We had a great trip. 

We got home and within a week I was in the hospital with Epiglottitis.  This is where your epiglottis gets swollen and makes it hard to breathe and is unfortunately a life threatening situation.  I had no idea what Epiglottitis was, I had never even heard of it. All I knew was that I was transferred to the University Hospital from a smaller hospital in an ambulance after the Dr told me I could die at any moment.  How reassuring.  Especially seeing as how that same Dr. was going to discharge me until I insisted on getting my throat scoped and I do not mean the mouthwash (brutal, I know).  As an aside, in regards to the first post of the week about health care professionals, telling an extremely sick individual that you almost discharged that they may die at any moment is not the greatest thing from a patient experience standpoint.  It doesn't exactly instill confidence in the system. 

The conversation went something like this when I got to the University Hospital... 

The Dr. asked me, "Do you have AIDS?"
Me: No. 
Dr: "Do you have HIV?"
Me: No. 
Dr:"When was the last time you smoked?" 
Me: I don't smoke. 
Dr. "Not tobacco, I mean crack" 
Me: I don't smoke that or anything else. 
Dr. "Not even meth?" 
Me: No, not even meth.

At this point I was thinking there was something majorly wrong with me.  If the Dr's first guess is I have AIDS and their other guess involves meth and crack I must be in trouble.  I was also on Percocet, wide spectrum anti-biotics, steroids, morphine, anti-virals, anti-inflammatories and probably a few other things that I did not know about.  I was half wondering if I was hallucinating and not answering the Dr's questions properly.  Was the Dr. even in the room?  They were, there were no hallucinations. 

Apparently epiglottitis usually only appears in young children and is usually caused by an influenza strain.  If an adult gets it they usually are a drug user and some glass breaks off their pipe and irritates the epiglottis to the point of epiglottitis.  The other reason adults get it is if they have an AUTO IMMUNE DISEASE.  And so it began... 

Tuesday, 14 May 2013

D-Blog Week: We The Undersigned (Petitions)

I have been thinking about writing a post on this topic for a while.  I have noticed that on Facebook, LinkedIn, Twitter and diabetic blogs that people with Type 1 Diabetes are petitioning to have the name changed to further differentiate the disease from Type 2 Diabetes. 

I understand that people with Type 1 Diabetes can get frustrated when the media mentions diabetes and they do not differentiate from the different kinds of the disease.  To me it seems like the two diseases have very little in common, there are different types of medication, there are different nutritional and exercise requirements, T1D is auto-immune and it is perceived that people with Type 2 could have prevented their condition ( just a perception, not necessarily reality.) ( This doesn`t even take into account Gestational, LADA, Type 1.5, or whatever else they decide to come up with.)

I think people with Type 1 Diabetes get frustrated because they are lumped into the same category as people with Type 2 Diabetes and the general population has a VERY negative view of people with Type 2 Diabetes.  People with Type 1 Diabetes do not want people to have that stereotype held to them.  The thing that people with T1D have to remember (including myself) is that people with Type 2 Diabetes do not want to have that label or stereotype either.  No one has chosen to get either type 1 or type 2 diabetes. 

I think from a public health and educational standpoint it would be a good idea to have more differentiated names other than Type 1 and Type 2.  It seems that there is a lot of anger from people with Type 1 Diabetes when it comes to these petitions.  People need to be careful not to direct their anger to others with Type 2 Diabetes, this just ruins any credibility they may have.  I know that these petitions are not supposed to be an attack on people with Type 2 but that is how it comes off.  It is important to remember that no one wants to have any kind of diabetes.  It may be a good idea to have a name change but the fact is the general population is extremely uneducated on most health matters, not just diabetes.  I do not think a different name is going to change any sorts of discrimination or anger that some people feel is directed to them.  In general, I think people are going to be ignorant of most diseases until they are directly affected.  A name change will do nothing to solve this. 

Monday, 13 May 2013

2013 D-Blog Week: Share and Don't Share

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

I have 4 main health care professionals that help me with my Type 1 Diabetes, my endocrinologist, my family physician, my ophthamologist, and a nutritionist.

My Endo...

I would like to thank him for diagnosing me properly when so many other doctors had missed it.  I would like to thank him for his undivided attention when we have our appointments.  I never feel rushed and I usually get my questions answered.  I wish that my Endocrinologist would be able to see beyond the diabetes and that I have other health problems that need to be addressed that are likely caused by having Type 1 Diabetes.  Should my wife have to ask for him to check my testosterone numerous times only to be told "He has lots of testosterone, look at all his whiskers."  Well, that is scientific.  Should I have to argue to get thyroid medication even though my labs say I need it? 

My Endocrinologist is a fabulous doctor for diabetes but I wish he could see the whole picture.  Just because my A1C is at 6.3 doesn't mean I am a super healthy individual.  It means I have my diabetes under control... for now.  I still have other health issues that I believe should be observed within the context of my diabetes and how they could relate to each other.  As I said, he is a great doctor for diabetes so I have decided to listen to him for my diabetic needs but listen to my family physician for everything else.  They do communicate with each other so they are at least on the same page.

My Nutritionist...

I doubt you eat like you tell me to eat so please do not judge me.  I know that you don't drink but that doesn't mean I can't.  It is not like I am out at the bar every night.  I do eat healthy and I often say to my wife "I wonder what Ms. Nutritionist would say about this meal?"  I do think about the advice that you give me and try to incorporate it into my everyday eating habits, I know this is important and thank you for your assistance but I could do without some of the judgement.

My Ophthamologist...

I would like to thank him and his office for being very thorough.  They have found problems that others have missed and for that I am extremely grateful.  My sight is something that I take very seriously (seems obvious but it is something most people take for granted) and I could have lost it.

My Family Physician...

My current family doctor is unbelievable.  I feel extremely fortunate to have found this doctor. She genuinely cares and always has time to answer my many questions.  She looks at my overall health and not just the diabetes and for this I am very grateful.  She is extremely supportive when it comes to dealing with insurance companies and filling out paperwork that needs to get done.  Not many doctors are this blatantly caring and I feel fortunate for being her patient. 

To all health care providers...

As a patient I understand you have an extremely taxing job.  Thank you for what you do.  Please realise that being a Type 1 Diabetic is extremely taxing as well and take this into consideration when discussing your patients health.  I am a lot more concerned about my own health than you are about my health.  I take this seriously.  Please realise this when you are speaking to me about my health.  I really am doing my best.

Saturday, 4 May 2013

Overnight Lows

Last night I went low at about 3:30 am.  I got out of bed and had to go to the bathroom.  Normally I would just walk to the bathroom like a regular person.  Last night I was wobbly when I stood up, then I was blindly staggering around the bedroom with my hands searching for the doorknob to the bathroom.  I thought "This is weird".  Then I got really hungry.  Starving.  It clicked "I must be low". 

I rarely go low during the night so this was a little scary/strange.  My wife came down and found me in the kitchen eating.  She was a little worried as this is not normal for me.  I started to feel better and made my way back to bed. 

There were some odd things about this episode.  I have gone hypo before but never quite like this. 

The strangest thing about this whole episode is that today I felt absolutely awful.  The worst I have felt in months.  I had absolutely no energy.  I could barely make if off the couch and then when my wife got home I had a two hour nap.  Did I mention that even with my interrupted sleep the night before I still got 9 hours of sleep.  I have never experienced a hypo hangover like this before.  They usually last only about an hour or two and then I feel better.

Another odd thing about this hypo is that I wasn't actually in the hypo range.  I was at 4.8.  Usually I feel OK at that level but not last night.  I think I could have had a rapid drop from a level of 10 to 4.8 in about two hours so that may be the reason I felt so out of it.

The last strange thing about this even is there was no reason I could see why it happened.  Usually if I go low I know that I gave myself too much insulin before going for a walk, or I overestimated the amount of carbs in a meal, etc.  This time I could find no difference in my pattern to lead to the hypo.  My wife did mention one thing tonight and it made total sense.   We were out for supper with our brother in law and I had two beers.  When we got home he and I had a rum and diet Pepsi.  So I had 3 drinks over a 4 hour period.  I would not think this would effect my blood sugars that much but perhaps that is the reason.  I have drank a lot more than that in the past with no negative consequences...(other than the actually hangover in the morning).

Or perhaps this was just one of those strange random diabetic events.  Sometimes weird things happen with no reason and we just have to deal with it.  I think I may have to resort to having some juice in my nightstand though.  Just to be safe. 
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