What I Wish People Knew

I know some things I experience as a Diabetic most people would not understand because they have never experienced it. I know there is so many things I wish my own family understood because they don't see my Diabetes daily like when I was a child. So it can be difficult. The interesting thing is that my best friend really see's all my struggles and seems to get it. I appreciate all the people in the DOC because having people who understand is beyond wonderful.

What I Wish People Knew-

• Even though I have struggles I don't need sympathy but just understanding.
• Dealing with lows at night will always be an issue for me since my Hypoglycemia Unawareness diagnosis. I do try to avoid the lows but I at least now not quite as many
• Not feeling lows in by far the scariest thing I have ever dealt with.
•  Dealing with complications and the judgement that comes with it is indescribably difficult. I will never be able to overcome the judgements or assumptions but at least I can educate. 
• I am not a punching bag for people because I have complications and you feel entitled to share you opinions.
• In order to do activities I love I need to preplan everything in order to stay safe
• Exercise and Hypoglycemia Unawareness I will struggle continually with lows but trying new things can help to avoid as many.
• Diabetes is never easy and assuming it is makes me feel angry.
• Having people understand that after a low is treated normally I am back to normal even after a seizure or bad low. 
• Having a disability I feel I have ten times as much to prove in most areas of my life.
• Even though I have overcome so much I really wish people would understand that I can do things that our challenging regardless off not feeling lows.
• No matter what has happened I get up each and everyday and keep on going regardless if I am scared or tired.
• Having a disability does not mean I do less work. 
• I wish my family knew how hard I work to keep myself safe.
• I am always way to critical of myself.
• I wish people understood my frustrations when I go low several times in one day and how draining it can be.
• I know my own family will never truly understand what it is like to be a Diabetic.
• Judgements by Physicians is never appreciated especially when you know nothing about me.
• We all need support and not judgement.
• I wish Dr.'s would not make assumptions such as all Diabetic patients with Retinopathy have high blood pressure and high cholesterol when I have neither issue.
• Being asked by Dr. how are things are going besides your Diabetes is appreciated. 
• Hearing I know you have been working so hard to keep your diabetes well managed is priceless.
• That no matter what is going on getting up and keep going helps me to keep my sanity.
• Waking up to EMS is overwhelming and extremely embarrassing.
• Having incidents at work, home and other locations can create an emotional overload.
• Learning new things about my Diabetes frequently even after 34 years.
• I am always working on keeping the lows to a minimum.

Diabetic Service Dogs:

• I can still do most things but with some adjustments in how I do them
• I have to think constantly about the safety of my Diabetic alert dog Duchess
• I have to worry about staying within the standard service dog protocol and still keep up with my Diabetes can be stressful.
• Having a service dog is incredibly stressful and a great deal of work
• Public access challenges are never easy and you are expected to represent a whole community of people with disabilities so being polite as possible is a must.
• I do not get much personal space having a service dog. She is always by my side. 
• Service dogs have off days just like us.
• Following the patches on my dogs service dog vest is always appreciated
• Petting without asking makes me angry.
• Talking to Duchess and ignoring me is not polite.
• Giving me space is appreciated
• If I say do not pet I really mean do not pet.
• Distracting my service dog can lead to her not working.
• Asking questions about my disability can be too personal.
• Assuming having a service dog is fun but it is actually not fun but stressful at times.
• Keeping your bond with you service dog takes work.
• Keeping a balanced life with your service dog is a must.
• Having a service dog will mean more work.

Decreasing Accuracy

I know most days I love my Dexcom but recently it is driving me nuts. Most of the time like last night it shows I was in the 200's but I was actually in the 120 range which is great. I had a low and treated like I normally would but my Dexcom tends be exaggerating my number around 60-80 points off. I know it does not seem to matter where I have my Dexcom place my arm, leg or stomach none of them are remotely accurate. I know my Dexcom tends to think I am low way before I am actually going to be low or really high when I never actually get to high. I know during workouts it take on average 20 to 30 minutes after working out to realize that I was low at all.

I know if I don't bolus for food my Dexcom tends to think I am moving up extremely fast several arrows up when I am actually moving up slowly. I know my Dr. uses this information to make changes but I feel like most of the data is not useful because it has been so off for the past three months. I know I was hoping that my Dr. does not want to make any changes off the data because I am finding that it mostly useless data at this point. I do plan on discussing this with my Dr. before she makes recommendations for changes. Normally my results are better but I also know I can only use my stomach for brief periods of time and so I rotate spots. I know  I normally do stomach, arms and legs depending upon which one has the most accurate spots but this time none of them seem accuarate.

I know I will never have it to where it will be spot on to what my blood sugar actually is but at times it would be so nice if it was actually much closer to my true blood sugars. I know I like to use it to make better decisions but I am finding recently that might cause issues instead of being helpful. I do put in the correct numbers but most of the time my Dexcom like to go back to the number it thinks it is at so I play the game of reentering at times.

Duchess's Day

I decided on Saturday afternoon that I was going to make Sunday a Duchess day. Keep in mind their was some things I needed to get done one Sunday but most of the day I was planning on spending the day doing things that Duchess likes. For example the weather was not great Saturday so we went for a 2 mile walk on Sunday along what we call Town lake. It is right along the water and you can see people paddle boarding,canoeing and other water activities. It is right near downtown and really a fun place to take your dog for a walk. There is people running, walking, bike riding and other activities. I know Duchess really loves walks so that was how we started the day. Then we played ball in the sunny backyard and she played in the front yard as I was doing things outside the house.

Duchess loves to be outdoors and her favorite activity will always be to play ball. She will play for hours. After all the walking and ball playing then I gave her some fruit and veggies to eat. I have been adding vegetables an fruit to Duchess food for several years now per the guidance of Canine Behaviorist. The Canine Behaviorist actually study dog nutrition and have more knowledge than most vets. They tend to also have guidance because Duchess is working during the day she needs more vegetables and fruit to be added to her diet. The nice part of adding this and yogurt to her meals is that it does not cause weight gain and her coat tends to shine really nicely since adding these to her
diet.

 

So after all the running around and some playing in the water Duchess was really getting worn out but was extremely happy. I know I do always try to make sure Duchess is getting what she needs from me and yesterday was a very fun day for both of us. I know Duchess is already alerted last night even though she was technically  in her off time. I know yesterday she also was given treats for behaving so well and also when I was finishing up some chores I gave her a new bone to chew on. I know Duchess was incredibly happy yesterday and I was happy to see it. I know we spend so much time together so I try to make sure I don't forget about all her hard work. She has kept me safe for quite a few years and spending the day doing things she enjoyed really made her happy.


 

Twisted in Thoughts

I thought I would re-post a Blog from January that I am very proud of and I thought is worth sharing again!!



I know I have been thinking a great deal about complications recently. I know most people hate to read about complications but since it is truly part of my life I feel the need to discuss it. I also know there is a great deal of people out there with complications that need to feel the connections with others who understand what they are going through. We all have struggles with Diabetes and issues that we all experience. I know my road with complications has been scary and with little information available to assist me with making choices. I know several years ago I had to make choices I never thought would come this soon. I know I had to make decision about the quality of my life. My Dr.'s wanted me to run blood sugars higher to reduce the risks of lows and I wanted to keep things under a 7 Alc to prevent further complications. So I made the decision that running with tighter control gave me the ability to have a life with out developing more complications if possible.

I know still today I am haunted by the fact that everyday I get to wake up knowing I played a part in where I am today. I know the times I did not react fast enough to a high blood sugar or did not get it down as fast as I could are probably part of that as well. Another contributing factor has been my untreated depression that went on for several years when I was a teenager. I also know my experience through out my life with seizures and bad lows and fear of lows have created some of the issue as well. I know I had a time where I ran things higher because I felt safer than trying to figure it all out. So now I am left with the constant thoughts of what if I had done more but it is really hard looking back to know if that in the long run would have made a huge difference. I am working on dealing with all the baggage I carry because of my complications and also fighting for Dr.'s who get that I work hard and don't look at me as a failure because at the end of the day I am still human. I am working to reduce my load this year in hopes that I will let me concentrate on what I need to do.

I know with all my hard work that I have kept myself as healthy as possible. I know that my work is paying off but I also know I will forever fight to be treated with respect by nurses and Dr.'s who will make assumptions about me as the patient. I wish they would understand that I have not by in anyways given up even in the midst of a bad low I get up the next day and go to work as normal. I don't let it stop me but I know all the stigmas attached to having complications won't go away and it is sadly part of my life. I know my voice as an advocate is important and a good reminder for physicians that they need to look at where the patients are at and do the best to assist them. I am hoping that with continued education that I can change my experience and others.

Invisible Disabilities and Conditions

I know at times people seem unable to believe that I have a disability or any health issue because it is not visible. I know unless you notice my pump you probably have not idea I have any health issues. I know my Dexcom sensor is out in the open some of the time as well. I know people see it and give me the weirdest looks most of the time I think it is funny because it does not bother me in the slightest. I know each day I face a great deal of unwanted comments and assumptions which really can make my life more difficult. I have to wake up each morning wondering if I did more would I be here today. I have to admit I still struggle with it frequently but I find the sting form ignorant comments can really burn even worse.

I am not really sure what people get out of telling perfect strangers that they think badly of them. I know I have been told if you tested more and followed orders you would not be here today but sadly Diabetes does not equal easy to handle. I know the average person I have meet say you test you take insulin and its easy but I tell start to tell them about all the things that can cause the bloods sugars to move up and down. They seem then to realize the more I explain that it is not easy. I know I wish it was test, count carbs and that was it but it is always so much more.

I meet a lady on the bus today who was struggling with a neurological disorder that is a little more rare so most people are not familiar with it. I know she was discussing how because people are unable to see it they believe there is no issue. I know I have found that to be true. I know some people seem to think that you poke yourself with a needle frequently it won't hurt but that is not true either. So I know that it can be difficult for any invisible condition. I know you tend to get less understanding and less compassion from others in general. Getting accommodations at work for invisible disabilities is tough. I remember back to my first seizure at work that until that happened they doubted my need for Duchess. It was not until she alerted to my coworkers did they really understand why I had her in the first place.

I know I see too much assumptions and not enough questions from people. These assumptions tend to lead to negative views of a person that are unfair and unwarranted. I know most of the time my life is crazy enough without the harsh comments and mis-information which lead to negative comments. Most of the time these days I won't tell people I am even Diabetic or what my health issue is. I know it gives me less of the negative comments which I honestly like but its sad I find that I can't share more information.

Endocrinologist Appointment I Am Uneasy About

I know I have an up coming Endocrinologist appointment. I am not at all concerned this time in many ways I feel like my A1c is most likely in its normal range and I know that everything has been fairly decent blood sugar wise. I could still go up in my A1c and still be in the range I want to be so I am comfortable with where I am at.

 I know I am prepping my list of items I need refills for and I am also getting my questions written down. I also have some recent changes I made and wanted the Dr.'s in put on some other changes I was thinking of making. I normally make the correct decisions but I like to bounce ideas off the Dr. which does help at times. I do almost all of the basal rate changes and occasionally the Dr. will make some minor changes. Most of the time I am on top of these changes. I know my Diabetes does not wait till I get to the Dr.'s office most of the time I need to do evaluations of where I am pretty frequently.

I am nervous in a great deal of ways because I am asking the Dr. about moving forward with the accelerated free fall for skydiving. I know my Dr.'s seems to believe I can still do anything any other Diabetic can so I am just not sure what the response will be. The good part is that I have jumped the one time with a plan of my own on how to prepare for the day. I know with Hypoglycemia Unawareness I need to have a plan of action for some things and I know I have a plan for work such as when I eat and when I snack. I know I can sky dive safely but having a plan its what seemed to work well especially since most of the jumps had long waits. Mind you I do have my graphs of the day already printed out ready to review them with the Dr.. I want to make sure I show them that I can do it safely.

I know I am incredibly stubborn and I know as a kid when I was told no at times I would do just that. I know I spent a great deal of my life being told Diabetics can't do this or do that. I know that I can so regardless of the advice of my Dr. I most likely will still jump. I feel like in some ways my Dr. has been more supportive than my family. I know my family doesn't seem to  hear as much as about all the Diabetics driving race cars, play pro-football and other sports. So they live by what they were told when I was diagnosed back in 1980. I know as of today I plan on living my life on my terms and not others misinformation. It has been long enough and I as an adult feel like I can make these decisions.

What I Wish They Knew

I know at times I have struggled a great deal with my disability at work. Most of the issues were created by people working in the same building who had issue with Duchess having dog bones because they felt it was not professional. Other complaints she had fleas but when they tested by leaving out traps to catch fleas they found none. Then there was the complaint that Duchess had too many toys and her dog crate took up too much room. I know all these issues came from other departments. I know I fought my hardest to have to put up a wall on my cubicle but now I honestly love having it. The reason is because it gives Duchess a quieter space to play and rest while at work. I know Duchess does not have an easy job she is constantly working.

I know the wall keeps people out of my cubicle and also creates less people from seeing Duchess and I which is nice because I am not constantly being interrupted liked I used to be. I also know that if an emergency happens the wall keeps crowds from forming around me. I know it has created a better work environment for both of us. I also know that all of the issues comes from people who have nothing better to do than complain and whine about Duchess because they believe I get special accommodations. The truth is that I currently have no real accommodations currently. I actually get the same amount of work and more normally. So I find it funny how people think because I have a disability that I do not contribute as much.

The truth is that most disabled workers miss less days of work and they also tend to do more work than the average healthy workers. So I find it interesting how people make it even more difficult for me at work by complaining. Thankfully my new manager does not take the complaints at face value and actually looks into to see if it is an issue. Thankfully every claim has turned out to be false and not true.

So after the past three years I really would hope that people would understand I work hard to be here everyday and that I contribute a great deal regardless of my challenges but I really wish people would leave me alone. I know these days you would not think others in the same office would cause you so many issues. I know from dealing with the general public I have not been treated with much respect and the same for my office. I just wish people understood I do not get anythings special such as discounts etc and I don't enjoy taking my dog everywhere.

I find the hardest part of my life is taking Duchess with me because the public access issues and fake service dogs. I face a great deal of challenges and others see it as fun but I have to say the past five years I have faced a great deal of obstacles and challenges just to have Duchess with me. I am thankful that I can have her but I want people to understand it is not fun. It just gives me the freedom I had lost. I know people think my life is very simple because I have Duchess but it actually is a great deal of work in actuality. 

The Past and My Parents

I know recently I have been blessed to have been able to see my best friend more often. We have been best friends since we were 12 years old. The best part is that we always stayed in contact and a great deal of our twenties were spent living far apart but thankfully I was always able to call her and keep in touch. I know we were discussing the past over dinner last night. I know my childhood was far from normal but I have to give my parents credit there was no pediatric Endocrinologist in the area so I went to a Dr. and my Dr followed what my parents requested of them. My mother made it her mission to take great care of me by being a nurse and being able to handle all the medical terminology. I know they did the best they could.

So with the fact that there was limited experienced Dr.'s I spent a great deal of my childhood not doing what most children were doing. I know my parents did not trust that other people could handle watching me or handle my injections. Thankfully some family members were able to help. I know I grew up not being able to do some things but thankfully as I got older they finally allowed me to do what I liked. The issue for me is that I had no idea what to do because I felt like to have so much freedom as a teenager was such a foreign thing to me. I did participate in sports, ballet as a child and other activities but most of the time my parents were always there. I know because of the seizures over the years were scary beyond belief for my parents but especially me.

I know my twenties I tried to make up for the fact that I had grown up way too young I was an adult way too early and way to serious. I also know the my shyness was due to several factors my diabetes and my parents always being present. I also know that I am very thankful though my time away from them was limited but they did a great job of taking us kids to plays, orchestra, concerts, camping, hiking and other activities. I know at the end of the day fear was a huge part of why my childhood was the way it was.

 I know I am thankful that I am so much more daring than my parents. I know my father still today thinks I can't do so many things but he is wrong. I know I will be unable to share with him my continuing adventures of sky diving because he tell me I shouldn't. I feel like now as an adult if I enjoy it I am going to find a way to do it. There is risks but I know I felt like I lived my life way to sheltered and I know that my Adrenaline Rushes seems to allow me back a piece of my childhood in some ways which is incredible.

I know my dad will never support me running a half marathon or pushing myself physically because he just doesn't seem to understand that we all are capable of doing things everyone else can. I know I do have Hypoglycemia Unawareness and I do plan on discussing my sky diving that I plan on doing with my Endocrinologist. I know they will support me need to continue to push to achieve my goals with some adjustments. I have do so many fun things as an adult and I will continue to find a ways to try all the new adventures I can. I know my friend felt bad or sad how tough things were for me but I also know life is tough at times. I am at least trying to make up for lost time. I think I enjoy it even more now then I would have when I was younger.

I had awesome parents and have been blessed but we all make mistakes and i know my mom worried about me constantly. I know they all worked together to make sure I always had health insurance and that I had the medications I needed. I know there is no manual for parents of type 1 children and everyone's Diabetes is different. I know my mothers Diabetes affected her in different ways than it did for me. I love them and I have leaned a great deal about how much they loved me by going to such depths to make sure I had what I needed.