All posts by Stacey D.
Art is Fun.
Based on the suggestion of my husband, I think this blog is in need of a more positive topic. I apologize if my last several posts have been sort of “downers”.
So on that note, I don’t know about you but I cannot believe that summer is almost over. Not that I have any real summer-ry activities going on but to think that fall is almost here, school will be back in session and the days will become shorter. Summer just flew by! And with a new month just two weeks away, I want to remind everyone that this coming Thursday, September 1st is Diabetes Art Day. If you haven’t heard about it it’s a day started by my friend Lee Ann. She is an art therapist and does absolutely wonderful things with diabetes related art projects. From Lee Ann’s site: “Participation is easy. All you have to do is make a piece of art that reflects something about your life with diabetes to share on September 1st. Last year, the submissions were as varied as they could be with participants using everything from traditional art materials like paint and pastels, to digital media like photography and stop-motion animation, to kinetic sculpture, Play-Doh, lots of diabetes supplies, and even cake decorating, and embroidery. On September 1st, upload an image of your work here on the official Diabetes Art Day website. You can use the ‘Description’ text box to add your name, the title of your work, materials used, and your connection to diabetes. If you have a blog, post your work there. You can use Facebook and Twitter (hashtag: #DArtDay) to share your work. You can also share your work on any of the diabetes social networking sites like Diabetes Daily, dLife, and TuDiabetes. Some people like to provide a narrative about what their artwork is about, what it was like to create it, or how the results compare to their initial intention… or, if you prefer, you can let the art speak for itself.”
I am not the most creative person on this planet so I’m going to need the next 2 weeks to put my thinking cap on 😉 But you should put yours on too and join in the fun on September 1st!
Bigger Things.
About 2 weeks ago, I posted about some little things that have sprung up for me recently in terms of complications. After my first visit to a retina specialist last week, it turns out my little “eye thing” isn’t exactly little.
I went to see a retina specialist based on the recommendation of my ophthalmologist when I saw him at the end of last month. From the pictures he took, he saw a deposit on my macula and thought it was something I needed to monitor. The retina specialist indeed saw the deposit from his own pictures but he also saw swelling in the same eye. This called for me to have a fluorescein angiogram for further analysis of what is going on in the back of my eye. I will be honest, I was scared. I’ve never had one of those tests before and the way they made me sign a consent form and describe possible side effects, panic set in. Bigtime. If you’ve never had one or don’t know what the test is, it’s when they inject a dye into your bloodstream that makes your blood vessels sort of fluorescent and easier to see in pictures. It actually didn’t turn out to be too bad, thankfully. I think the worst of it may have been the pink vision that followed for about 5-10 minutes afterward or the fluorescent pee I was excreting for the next 2 days! From those pictures, the doctor was able to see that I have some blood vessels that are leaking. That is what is causing the deposit on my macula. Stacey, this is diabetic retinopathy. Diabetic retinopathy, this is Stacey.
What scares me the most is that all of this began since my last ophthalmologist exam in November. Nothing showed up in the pictures taken then. Just 8 months ago. (I typically have an exam every 6 months however this time around they forgot to remind me so a little more time had passed) This just stressed to me how crucial keeping up with the various doctor appointments is. Even as annoying as they can seem.
As unhappy as I was to receive that news, I am glad that we caught it fairly early. I am scheduled to have an intraviteral injection (medicine being injected into the eye) in the next 2-3 weeks. I’m definitely not looking forward to that but if it’s going to help the leaking situation, hopefully before it gets much worse, I’m all for it.
Little Things.
I have been living with type 1 diabetes for almost 30 years. I know that is a very long time (remember urine strip testing?) and fortunately I have remained complication free. Up until now. Some of the things that I fear the most are beginning to happen. And it seems all at once. I was diagnosed with the start of neuropathy in my feet recently. I will have an NCV to confirm that in the next month or two. I started treatment for mild gastroparesis about two months ago. And next week I will be making my first visit to a retina specialist due to a deposit on my macula that was detected at my semi-annual check-up with my ophthalmologist.
Those of us who have diabetes know the possibilities that may lie ahead. And we do everything we can to believe that they won’t happen to us. So to hear those possbilitiles becoming realites, is a bit unnerving. Right now these are little things that are not the cause for alarm but more, things that I need to monitor. But it scares me half to death that these things could progress. Or that other things could start happening. I know that early detection is crucial in diagnosing and treating diabetes complications. And even stopping the progress of them. I know that now more than ever I need to manage my BG as tightly as possible. So with that knowledge, I’m not going to let these obstacles get me down. I’m going to do everything in my power to manage them. And not let my worst fears come true.
And on a happier note, I want to wish my beautiful niece a very happy 4th birthday!!! 🙂
A Date I Never Forget.
Tomorrow is an anniversary that I dread every year. A date that I wish the calendar could skip. A date that does not get any easier with time that has passed. Anyone who has lost a loved one knows the feeling.
On July 30, 2003 I lost my father. I lost the man who raised me so well. I lost the person who was always so supportive while I was growing up. I lost one of the closest people to me. I lost one of the parents that I love so much. I may not cry missing him as often as I did eight years ago but don’t be fooled that the hurt has gone away. His dying left a hole in my life that can never be filled. I hate each year that passes without him, even more than the one before. That means more and more time since I last saw him. Since I last spoke to him. Since I last got to hug him or tell him I love him. I don’t wish that he was still here suffering the way he did. I wish I could turn back time to when he was here and mainly healthy. When he was able to see better. Walk better. Feel better. Those are the times that I truly miss. And I loathe you diabetes for taking that away from him. Taking him away from us.
So much has changed since that day but one thing remains the same – the deepness of sorrow I feel without him.
Here is my sister and I with him when we were around 8 and flowergirls in my cousin’s wedding.
Here is my sister and I again with him at another cousin’s wedding around 1993 (I think).
And here he is holding my cousin’s baby in 2000.
Missing Out.
There seems to be a baby boom going on – both in the diabetes community and out. And while I’m genuinely happy for those I know with growing families, some first time parents, these stories also touch a painful piece of my heart. Joe and I have been married for over 8 years (wow that makes me feel old!) I absolutely love the life we share together. I couldn’t be happier married to any other person on this planet. But I can’t help but feel a teeny, tiny longing for something that we don’t have. A child. I think it’s safe to say at this point that children are probably not in our future. And although that is a decision we in a sense made based on what is best for us, it’s not one that I can say I am exactly happy about. Diabetes did play a large part in that decision. I know that women living with type 1 diabetes can have successful pregnancies leading to healthy children. We know that. But that doesn’t take away the stress and the amplified possibilities that come along with a diabetic pregnancy. There are other factors we considered like work and child care. Not to mention freedom anyone? And while all these things lead to an anti-baby decision, I can’t deny that it tears me up inside sometimes.
There are certain situations that make me feel better. Like not hearing a word of conversation with my sister on the phone due to screaming children in the background. Or watching 3 of your friends toddlers having simultaneous tantrums 😉 But there’s a part of me that feels left out. Especially since we are one of the only couples we know without children. Three years ago I went to the baby shower of a friend. And sat at the table with 3 other expecting friends. When I left, I sat in my car and cried. It’s hard to explain the pain because sometimes it’s faint. Sometimes I feel okay with it. But it’s still there.
Maybe one day my life as I think it will be, will change. I don’t know what the future holds. But just know that any child should not be taken for granted. There are some people whose lives are not filled with the joys of being a parent. And I guess I am one of those people.
Possible Record.
7:30am 79
8:55am 54
10:00am 76
1:15pm 51
1:35pm 45
1:45pm 53
2:00pm 89
3:10pm 63
4:22pm 57
5:30pm 178
8:05pm 63
9:30pm 134
These were my BG readings yesterday. 7 out of the 12 were low. I had to calculate that I drank 168 grams of carbs in the form of juice or soda and it wasn’t even enough to keep my BG up. I suspended. I lowered my basal. I was going to rip the insulin pump site out of my body! I felt awful. And I worried about what it was doing to my body. I was driving (in between lows of course!) and it started raining. My mind went completely blank on how to turn on the headlights. That scared me for a moment.
I did nothing out of the ordinary yesterday either. I got in a workout around 11am when my BG hung out around 100 according to the Dexcom but that’s not unusual. This isn’t the first time that I’ve encountered numerous lows in one day but this may be a record. Even in the 29+ years that I’ve been dealing with lows. And I know that others go through it occasionally too. But it really makes me wonder what causes it. I guess maybe I’ll never know. I just hope it doesn’t happen again any time soon!
Happenings.
There are a couple of diabetes related things (of course!) going on that I think are worth bringing to your attention.
The first is that I participated in my first ever Skype interview, telling my diabetes story. Thanks to VJ for offering his time and interest. Head on over to Diabetic 365 to check it out and watch me say umm a lot 😉 (I need to work on that!)
The second and more important event is the O is for Outrage campaign started by the International Diabetes Federation.
According to the IDF, “we are asking the US President to show the world that he is committed to the prevention and control of non-communicable diseases (NCDs). This topic is the subject of the UN’s second summit on global health issues. Having President Obama attend will inspire other leaders to take this issue seriously because “we do not want the world to sleepwalk into a sick future that is avoidable” (Ann Keeling, IDF CEO)”. A great post about this campaign was posted by Leighann over at D-Mom Blog today. Please head over and submit your very own postcard that will be sent to President Obama by the IDF.
And lastly, speaking of the IDF, the president – Professor Jean Claude Mbanya – will be the guest on DSMA Live tonight at 9pm EST. Be sure to listen in or even call in to ask questions!
From Good to Better.
Yesterday I had my quarterly appointment with my endocrinologist. (I’ve never referred to it as quarterly before but since it occurs every 3 months or 4 times a year, I guess it qualifies as a quarterly event!) For some reason I was unusually calm beforehand. Well maybe except for those very few minutes before she entered the exam room. I went without any BG readings for her to review, thanks to my recent meter switch, and felt very guilty. And still, my 128/75 blood pressure reading reflected my calmness. (side note: my BP is always higher than that due to my nervousness) We went over all things diabetes related and all seems well. I have a Nerve Conduction Velocity test scheduled in 3 weeks but that’s another story.
One of the reasons I dread my endo appointments each time is not due to the dr herself. Or the office. It’s simply the a1c. Since I have been putting forth a much greater effort into my diabetes management, my a1c readings have weighed greatly on me. My result yesterday was 7.0%. Down from 7.2% three months ago. Dr. K is pleased with that and considers it good control. Since using the Dexcom CGMS continuously (no pun intended!) over the past two years, my a1c has remained pretty stable around the 7.0% mark. It is the lowest level I have ever had in my 29+ years of living with diabetes. And while I’m satisfied with this value, I need to work on it a little more to try and it get it a tad lower. To a value that I’m actually happy with. Satisfied is good. Happy is even better.
(photo credit goes to Yoshikazu Nagai)
Changes.
Almost two weeks ago, I posted about BG meter accuracy issues I’ve been having. I received the new replacement meter from One Touch as promised, last Tuesday, and I continued my comparison between the Ping and the Freestyle Lite. Unfortunately with the same results. On average, the Ping was 19% lower in readings, sometimes much more than that. Now I know what you’re thinking – the FDA has a standard of meter accuracy within 20% and that difference is within that standard. So maybe technically there is nothing “wrong” with the Ping meter. However I am not comfortable with that big of a difference. Just yesterday my first reading on the Ping read 101 mg/dL. Since my Dexcom read higher than that (and I’ve run out of Lite strips) I retested. This time it read 185 mg/dL, more in line with the Dexcom. That’s a 45% difference! Like I mentioned in my last post, that 19% variance is equivalent to one whole a1c percent! That is huge. And I truly believe that it has lead to some disconnect I’ve had between what I thought my BG readings are and what my a1c is.
I’ve made the decision to switch from the One Touch meter to the Freestyle Lite. It’s not a decision I was happy to make actually. I’ve depended on One Touch for quite some time and am sorry that their product wasn’t more reliable for me. And I’m not saying it’s a bad product either. My conclusion was strictly made on my own personal experience. I am thankful to have the knowledge and resources available in order to make this decision that is so imperative to my health. Part of my reason for sharing this story is to inform others who may not be aware that things like this can happen. Most importantly, the FDA seriously needs to work on improving that 20% accuracy standard. And ASAP. Our BG readings are nothing to mess with.
And a thank you to Edgepark for being so accomodating in getting my strips exchanged.
The Girl with the Portable Pancreas 
