Last week was a full one. What was supposed to be one doctor appointment one day and one a week later quickly turned into 3 in one day. But I've already explained all of that. Two of those appointments were with brand new doctors. The first was with an endocrinologist. In my 3 years with diabetes I've only seen family doctors for my care. The first who diagnosed my Type 1 as Type 2 and then quickly passed me along when I proved him to be wrong 18 months later. The second a family doctor with a lot of knowledge about diabetes who got thing straightened out for me and started me on insulin. I was very happy with the second but I received a letter from the clinic where she works a while back that said she was leaving there and I was never able to find where she was going. Being in between doctors and thinking about going on a pump I decided it was time I found an endo. I made that appointment over a month ago and have been anxiously awaiting it. I love the new doctor (Shout out to Dr. Robert Ennis in Meridian)! He listened to everything I had to say, took plenty of time to go over my history and any concerns I had. When I asked about pumping he was quick to suggest a few and refer me to a few reps that could help me figure out pricing. He even complimented me on my fasting numbers and didn't chastise me for forgetting my meter (oops). The nursing staff was great as well, despite missing a vein when doing my blood draw. Everyone was personable and, get this, when they told me my lab results would be in by the end of the week and they would call me with the results...the actually did it! And my A1c came back at 6.8. I see the beginning of a beautiful relationship here.
The other new doctor I saw that day was a new psychologist, Amy Walters. I had met Amy previously as she does a lot of volunteering with Camp Hodia and she spoke at DTreat when I attended in August. I have seen a few different therapists in the past year or so and finding one that clicks can be such a struggle. I am an introvert by nature so opening up and talking to strangers is a struggle for me. Then there is the fact that diabetes plays such a huge part in my overall health, especially my mental health. Dr. Walters works at the Humphries Diabetes Center in Boise, Idaho and works exclusively with patients with diabetes. Plus, she has a daughter with Type 1 so she knows what's going on. Not having to explain the ins and outs and the daily frustrations of being your own pancreas was a breath of fresh air, We spent almost an hour at my first appointment getting to know each other. She asked a lot of questions to dig into what is going on with me and I felt like she was genuinely interested in what is going on in my life. It was a great first impression.
Overall, I am really happy with these two new steps in my T1D journey. Taking control of your care and being your own patient advocate is such a huge part of this disease. If you don't make it known what you want and take the steps to get there, you will just continue along the same path you're on and you'll likely never get to where you want to be.
Saturday, September 27, 2014
Wednesday, September 24, 2014
What the DOC is to me
In the last week or so there has been a lot of conversation about the Diabetes Online Community, what it means to some people, and the negative feelings surrounding it for others. My experience with the DOC has been an overall positive experience but I can see where some people might be coming from. I guess I kind of liken it to a big party. There is a lot going on and at anytime there are several groups sort of engaged in their things, with their attention focused on that. If I am a newcomer to the party it is easy for me to go unnoticed. Unless I make some noise about my arrival a few people will probably see me walk in, but all those people focusing on their own conversations might not even notice. And if you are someone who is already insecure and dealing with all the changes that dealing with T1D brings it can be hard to bring that attention to yourself. This is no way that fault of the new person or the existing members of the party. It's just kind of the way that it is. Unless you already know someone at the party, getting know other people at the party can be not only hard, but kind of intimidating.
Here is how it kind of happened for me. My diagnosis had left me feeling so isolated. In my travels through the internet I had come across Six Until Me which led me to several other blogs and eventually the DOC on Twitter. I tried to join in on a few different conversations but never really took. With no responses to my posts and not really committing to it I did feel a bit discouraged. I already had my blog going but it was really just a place for me to vent my feelings. I was still hesitant to put these intimate feelings out there for other people to see. The posts I did put out there for others and invited people to read were usually ones that just described what was going on but never really touched on my personal feelings. I eventually found the DSMA chats that take place on Wednesday nights. The first night I had a hard time keeping up. The next one was a few weeks later and I tried to get involved but at times felt like I was kind of talking to myself. I don't make it to the chats regularly but what I have found is that the more you go, the more involved you get. When I see new people introduce themselves, they are always welcomed into the conversation. But I really don't see that all that often. Perhaps there are people lurking but afraid to get involved? But this isn't like the party or even like a chat room. If you don't put yourself out there no one will know you are there. If my experience has taught me anything it's that, like with most things, you get out of the DOC what you put in. It takes time and commitment, but any friendship does.
I read a post a few days ago from the side of someone who does not feel included in the DOC. He talked about asking questions to those people who were posting from different events and conferences but never got answers, instead only saw repeats of what was being said at the meeting or conversations among themselves about the refreshments. I enjoy the references to what's going on because if I can't be there myself I live vicariously through those who can attend. And I think that is why those people are invited to attend. Because they have more reach. It doesn't make sense to invite someone like me who can only reach a handful of people when you can invite someone who can reach thousands. Space is limited and I think it's smart to make the best of use of invites to spread their message as far as possible. That certainly doesn't stop me from being completely envious of those people. I realized recently that I was asking myself why them and not me as well. Then I realized I have never made an effort to get a scholarship or even see what it takes to attend on of these events. I got out what I put in...nothing at all. I could understand most of the viewpoints presented recently, but this one I don't get,
" It does seem that they often talk to each other, and while they tout 'diabetes advocacy' (whatever that means) it seems to me that the place to start is with other PWD. "
Advocacy means something different to everyone I think. I don't think you can discount the work that any of the so-called "big players" has done to advocate for diabetes. I see it every day, from Strip Safely, to You Can Do It, to the new Medicare initiative. When this group gets behind something they do big things. I saw it myself when I put the word out about my own interaction with a government leader. Seeing this statement really makes me wonder, how much of a chance is this person really giving the DOC if they can't see the advocacy efforts put forth by it? As for advocating for other people with diabetes, isn't that what all their advocacy is about?
Monday, September 22, 2014
The Gauntlet
It seems to happen every so often. No matter what the spacing of my appointments I come up on a time of year where everything happens at once. Appointment after appointment after appointment. I usually try to schedule my doctor appointments on early mornings of days that I work a late shift (usually Tuesdays) so I don't have to pay for an extra day of daycare for a 20 minute appointment. And every time I think about about having to get up early enough to fight traffic and get to said appointment 8 o'clock I kick myself for it. Nevertheless I have come upon that time once again. What was originally scheduled as 3 appointments over a three week period (something I already wasn't thrilled about) has now turned into 4 appointments over a 2 week period. I think it's safe to say that after Wednesday I will have had my share of poking and prodding. Last Tuesday I had a follow up appointment with my arthritis doctor, which has been about every 3 months for the past year or so. Things are looking good on that front, the swelling has gone done in my knuckles and there it is pretty certain at this point what was originally thought to be rheumatoid arthritis a year or so ago is not. I still don't really have any solutions for the knee pain that has begun to plague me more frequently, other than don't bend it or kneel on it too much. And then there was the chastising for popping my knuckles that when something like this:
Doctor: "Do you do that often?"
Me: "Do what? (looking around with a bewildered look)"
Doctor: :That. With your hands."
Me: "Fiddle with them? Yeah. It's a nervous habit."
Doctor: "No. Crack the knuckles."
Me: "Umm. Did I? I guess so. I don't really notice it I guess."
Doctor; "You might want to not. It can increase the inflammation in your joints."
OK. Taken note of. But how do you stop doing something that you don't realize you're doing?
My adventure this week will consist of my first ever endo appointment tomorrow followed by a dentist appointment made in a hurry last week after I broke a front tooth. I now look like a hockey player on the losing end of a fight. Follow that up with a visit to a new therapist on Wednesday and I will have completed the gauntlet. I thought I had spaced things out and could have easily handled the 3 appointments stretched out over a 3 week span, but alas, the stars did not align for me. After breaking my tooth on Wednesday I scrambled to make an appointment as soon as possible to get it fixed, settling with the following Wednesday. Then the next day the therapists office called to move up my appointment a week. I agreed because I am eager to get in and hopefully get some of my stuff under control. I tried to move the dentist appointment up further but was only able to go to Tuesday. So I was left with deciding if I want to get my pancreas poked and prodded followed by my mouth a few hours later and then off to work, or get my brain poked and prodded followed by my mouth and then have the day off. I opted for the latter. Because 1) I want to get my mouth back to a presentable fashion as soon as possible (I work face to face with the public most of the day) and 2) I have a feeling my therapy appointment is going to be exhausting and the last thing I want to do I is go have my mouth spread open for an hour or more afterwards. So I'll suffer through and live on to the next one. I'm mostly just glad to have access to good care that I can get in to in a reasonable time. Do you prefer to get all your appointments done in one quick swoop or spread them out over time?
Update: I got a voicemail while in the dentists chair asking if I could change my Wednesday appointment to a Tuesday appointment at the psychologist. So much for spreading it out. In reality I was glad to do it. One less trip since I was close by and my day off on Wednesday is actually going to be a day off
Tuesday, September 16, 2014
Hourglass
It's as if I'm trapped inside an hourglass. Those dark sands trickle down slowly from above, filling the empty spaces inside and around me. It pools around my feet, moving between my toes then up and over the tops of of my feet. The sand works its way up. And up. And up. As it reaches my ankles and then tickles the bottom of my calves it gets harder to move. I can do all the things I want to do, they just take more effort than usual. And the dark sands keep moving up. And up. And up. Passing my knees, then my thighs, and reaching my waist. Everyday tasks become harder. Getting out of bed is a struggle. Getting from point A to point B used to be automatic, now it seems an insurmountable task. My belly button fills with sand as it moves up. And up. And up. The rising sand puts pressure on my stomach and diaphragm and even breathing seems to take more energy than I can muster. My hands are buried. The sand his risen above my elbows and up my chest. I should struggle but there is no fight in me. I watch it climb, helpless to resist. As my shoulders disappear all I can think about is sleep. I just want to lay in bed all day. As if doing anything more will drain every last ounce of life from me. I struggle to keep my eyes open to see those dark sands climb up. And up. And up. I used to be able to feign a smile or tell a joke to cover up what I am feeling, Humor and sarcasm my coping mechanism. Now the sand covers my lips, forces its way inside my mouth and I can not smile. I can not laugh. I can not scream. I feel the roughness on my tongue, the grit of sand between my teeth. The sand tickles my nose as I breathe. I have resigned myself to my fate of darkness. I am giving up. I let these dark black sands envelop me as they climb up. And up, And up,..
The something clicks. Maybe it's reading something written online. A blog. A tweet. A status update. The 'me too' moment. Maybe it's hearing someone say, "I know how you feel. I've been there. You'll be OK." Maybe its the anticipation of a new project. Maybe it's a moment with friends or family. Or maybe it's just remembering that there are good things surrounding me. Maybe it's something as simple as hearing a song triggers some kind of relational feeling. Whatever it is, the hourglass has inverted. Those dark sands that once threatened my sanity begin to retreat as slowly as they first came. Soon the smile on my face shows through. Breathing becomes easier as the sands move below my chest. My hands are free and the daily struggle turns to routine again. Day be day I slowly begin to feel like myself again. The cobwebs are gone from my brain. The light begins to shine brighter as I watch the darkness that once consumed me move away and down. And down. And down...
I wrote this as a way of describing what depression feel like to me. It is so hard to explain to someone who has not experienced it themselves. The way it seems to sneak up on you bit by bit and you don't really notice it. Then one day you notice that you're always tired. That everyday tasks seem impossible to do. Like you're dragging a weight. You just want to spend the day wrapped up in bed. The things you used to take joy in no longer matter and you don't even feel like fighting the feelings. But then sometimes there is one thing that can turn the tide. For me that is often some new project to focus my energy on or reading something in a blog that reminds me I am not the only one experiencing this. That there are others out there doing the same thing and others who have come back from it. How do you explain these kinds of feelings to people? What do you do to bring yourself back from those dark places?
Monday, September 15, 2014
D-Stigma in the Idaho Leadership
I was just sitting down to write a post about how all my doctors appointments seem to fall all right together a couple times a year regardless of the interval between them and how its kind of frustrating but kind of convenient. Then I got a response to a letter I sent urging my representatives in Idaho to vote for funding into diabetes. The response came from Raul Labrador. After I read it, all thoughts of that post were gone and redirected to a response. What I expected to get was a canned response saying that he would keep that in mind, but what I got was this:
The highlighted part was the part that got me going. I don't have the words to explain the feelings I had when I read that part. Infuriated and dismissed is a start. It seems to me that he is as uneducated as most about the issue and is blaming people with diabetes for having the disease. My first response was something like "Eff you Labrador! You don't have a clue!" I know government officials have a lot coming across their desks and I don't expect them to be experts on everything, but I do expect them to be more educated than the average person and take a little time to know what they are talking about before speaking on it. I would rather have no response at all. Then I calmed down (a little) and spent the better part of an hour crafting my response: Dear Rep. Labrador,
I am glad to hear that you see the epidemic that diabetes is, however I fear that you may be severely misinformed about the disease. Most of the general population is. But if you are going to tell me that you are this concerned about it I feel that you should educate yourself. Below is the part of your email that concerns me the most:
"However, there needs to be a balance between the needs of our people and the nation’s economic responsibilities. During hard economic times like these, sacrifices must be taken on the part of all to ensure that the United States is, and will continue to be, in a position of economic prosperity. Measures need to be taken on the part of the individual, and personal responsibility must be exercised to improve the economic and physical health of our nation."
Perhaps I am wrong but in the last sentence of that quote it seems to me that you are blaming the people with diabetes for having the disease. "Measures need to be taken on part of the individual, and personal responsibility must be exercised to improve the economic and physical health of our nation." If that is not the intent of that statement then please let me know. But for the purposes of my response I'll continue to operate under my impression that it was.
Let me start by letting you know that there are two types of diabetes. Type 1, which I personally have, is an autoimmune disease. It's onset is generally in children and teens but can come at any age. The only thing I did to bring this disease upon myself was be born with the genetic markers that eventually triggered my immune system to attack the insulin producing beta cells in my pancreas. I now take insulin shots 4 times a day at minimum and up to 10 times a day, trying to mimic what a healthy persons body does for them. I also check my blood sugar via finger prick multiple times a day. My wife and I are gainfully employed and have always carried health insurance. We are by no means in need or poor but there are times when it is a struggle to find ways to cover the cost of the two insulins I have to take everyday, the cost of test strips, the cost of doctors appointments multiple times per year while balancing all of this with the needs of our family. Those things mentioned are the minimum that I need to stay alive. This is not a cheap disease. No amount of diet or exercise, no special pill, no miracle drug, at this time will ever free me from this disease. The only thing that will is a cure. And that takes funding. So please tell me what measures I should take and what personal responsibility I should take to improve my health and the health of our nation? I make $40,000 a year and sometimes struggle to get the supplies I need to keep myself alive. What are those people, many of whom are your constituents, supposed to do. Because, as I'm sure you know, much of Canyon County survives on a very low income.
The second kind of diabetes is Type 2, which I also have experience because I spent almost 2 years thinking that's what I had due to a misinformed doctor. This is what I'm guessing you and most of America thinks when they think of diabetes. It generally effects those who are overweight and older in age. It is caused by an insulin resistance in the body in which the body's cells do not process insulin effectively and therefore their blood sugar rises. It can be controlled by diet, exercise, and oral medications, but not cured. A person must have the genetic markers and a predisposition to get Type 2 diabetes. You may have one person who is 300 pounds and never leaves the couch who will never have diabetes because they do not have those markers, or you may have someone who is moderately overweight and leads a sedentary lifestyle who does get it. My point being that while there are lifestyle choices that can lead a person to develop Type 2 diabetes, that person must also have the genes. And while it can be managed there is no cure. That again takes funding.
America is incredibly misinformed about diabetes. I fear that you are also misinformed Mr. Labrador. 29 million people in the United States have diabetes. Of those it is projected that 8 million are undiagnosed. 108,000 adults in Idaho have diabetes and another 78,000 have pre-diabetes. Hispanics and Native Americans are far more likely to develop Type 2 diabetes because of their genes. If I am not mistaken, that makes up a large part of your constituency. Diabetes is the 7th leading cause of death in America. It leads to heart disease, kidney disease, and eye problems. Some of these people may have made lifestyle choices that did not help their fight against diabetes, not one of the the nearly 30 million people in the United States with diabetes has diabetes by fault of their own.
I hope that you take these things into consideration when making decisions about funding for diabetes programs. A cure is a long ways of but it is obvious that people all over the state of Idaho need more education about diabetes. Neither a cure, nor education can happen without the proper funding. I also hope that you will take the time to properly educate yourself about the disease that you know is an epidemic but believe should be handled by measure of personal responsibility. Just a few suggestions to start: www.diabetes.org, www.JDRF.org, and even locally www.hodia.org. All three of these organizations work tirelessly each year to help educate and make life better for people living with diabetes. I encourage you to take the time to check them out and think about what you can do from your position to help further the cause.
Sincerely,
Craig Le Fevre
Person with Diabetes since 2011
__________________________________________________________________________________________
I know that I am one voice. That response served two purposes for me. It got all that off my chest and it gave me a starting point to jump off from and get the word out about how one of our elected government officials views his constituents. Needless to say he has lost my vote and any support that may have ever come along from me. I hope that goes for anyone who is effected by diabetes that this reaches as well. I am appalled by his ignorance and his response. But it seems to be par for the course. The stigma about diabetes reaches everywhere and even those that you think should be educated about these topics before they vote on them are a part of it. If you live in Idaho please visit Mr. Labradors website or email him at RepLabrador@housemail.house.gov to let him know how this makes you feel. Something tells me that he is not the only representative that feels that way so reach out to other representatives in the state as well. You can find contact information for the Senate here and Congress here. If you are not from Idaho, please help get this out to others. I am one voice and you are one voice, but together WE are very loud.
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Wednesday, September 10, 2014
Venn
I've been sorting through some pretty negative feelings lately. This was one of the outcomes:
These two diseases cross over so much. I was surprised how many of the words could fit into either drop. Then I realized how negative I was being and I've begun adding some things that make me happy outside of the drops. I'm don't claim to be a talented artist by any stretch of the imagination, but creating seems to help sort through the muck. What do you do when you start to feel the negativity creeping in?
Saturday, September 6, 2014
Breakdown
You might call me a man of few words (a MOFW?) Much to the frustration of the Pretty Lady In My Life I am just not a talker. Sure I'll talk about football, the weather, my feelings on politics or the injustices if the world, even the ins and outs of diabetes. But when it comes to feelings, the words aren't really there. One of the reasons I started this blog was to give me an outlet for some of those things that I struggle to talk about out loud. However, looking back I don't know that I have really done that as of yet. I don't know exactly why, but I think a lot of it is because that often leads to real life conversations and that scares me. I had a bad day yesterday. A really bad day. Partly diabetes related. Partly depression related. Partly just plain old life. I didn't really want to talk about it for various reasons. It lead to one terrible moment that I am kind of disgusted about. But last night as I read some other blogs and found myself on the Hedgie Pricks Diabetes page which is trying to extend the conversation about depression and diabetes I found that one of the problems about situations like mine is that it doesn't get talked about. That leads myself and others to feeling like we are the only ones going through it. But I am not alone. And neither are you. No matter what a person is going through, there is surely someone else out there who has gone through that as well. But how do we know that if no one is talking about it? So, as hard as it is, today I'm going to talk about it.
Wednesday night I went to bed with a blood sugar of 81 which is usually not a problem. I slept fine through the night and woke up Thursday morning at 67, which is unusual. Low numbers in the morning are very rare for me so I'm thinking I was probably low through the night but I felt OK at that point. I ate a granola bar for breakfast with no bolus and thought I was out of the woods. Then at about 10:30 I felt the beginnings of a migraine coming on. One of the feel your heartbeat pound in your head, nausea inducing, sit in a dark room kind of migraines. The kind low hangover kind but amplified. I tried to treat it but it was getting worse and by the time I left work and picked up my kids from daycare it was almost more than I could take. So when the Boy Genius started in on his usual routine on the drive home about not wanting what was being cooked for dinner that night, how life isn't fair, and anything else he could find. Head pounding and irritated by traffic, I snapped. I turned around in my seat and yelled. LOUD. It felt as if I was outside my own body seeing this happen, not recognizing the person in the drivers seat. The crying stopped but I immediately regretted my reaction. Both kids sat quietly in the back seat with stunned looks on their faces. I couldn't help but feel like my own kids were now scared of me. And I definitely didn't feel any better than I did before. The rest of the ride home was silent with kids not even able to look me in the eyes. When we got to the house the Boy Genius went straight to his room. Even after I tried to apologize and explain why my reaction was what it was I got no reaction from him. He just laid on his bed silent. When I got the Princess out of her carseat she simply had a sad, defeated look on her face that tore me up inside. As a father, seeing your kids that way and knowing you are the cause is one of the worst feelings in the world. Even later in the night after I received a paper airplane that said "I'm sorey," and things were more or less back to normal the sting of what happened was still there. When I closed my eyes I saw the heartbreaking look on their faces. When I laid in bed going to sleep all I heard in the silence was the sound of my voice, louder than it ever should be with my kids, Even the next day all I could think about was how out of line my reaction was and how out of control of my own body I felt. It was hard to focus on anything else and I felt anxious about not being able to control my emotions. Tears came whenever I thought too long about it. It was tearing me apart.
I'm not trying to make excuses for my behavior or say that it is cause by diabetes or by depression. Both things played a part but the reaction was my own. I have a short temper at times and not feeling well or being already somewhat down shortens that even more. I'm not really sure what I am looking to gain with this post. I just know that I feel like it should be talked about. I hope I am not the only one who experiences things like this. And I also hope that maybe someone else out there who is going through it might find this and not feel quite so alone. Type 1 diabetes has it's own stigma. Depression has it's own stigma. I really feel like the only way to eliminate that is to talk about it and correct stereotypes. Even when it seems impossible
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