Thursday, December 13, 2007
This morning I woke up with a headache. Not a little headache, but a killer, mind numbing one that had me analyzing what the hell was going on. I quickly realized that I was simply not drinking enough water.
I was clued into the importance of this at a Fit, Family Club night at my daughter's school last night when the session leader was talking about how we often hunger from thirst. That we might be eating more, because in fact we are really thirsty. She recommended that we drink a glass of water before we start a meal; that one action may curb our tendency to consume more food than we really need.
So, I got a bottle of water this morning and drank that before my coffee. I then got a huge glass and sipped on it for almost an hour. I also drank two cups of my favorite tea, Buddha's Bliss from Texas Medicinals. Within an hour, my back and neck stopped hurting, my headache cleared, my energy was back to buoyant and I just felt darned good.
It can be hard to remember that self-care begins with the smallest things, but it is an accumulation of those efforts that end up making us happier and healthier.
Sunday, December 9, 2007
My girl and I made sugar cube houses; a diabetic nightmare if I ever saw one, but they are beautiful. I caught myself eating one of the candy rocks off her stone pathway to the front door and had to slap my own hand away.
They were much prettier before the kitty decided to play with them.
Just got the tree up with family this evening; weeks later than we have ever done it before, but I think I have some holiday blues, which leads to more consumption.
I haven't been wearing my CGM for about a week now. Just tired of everything and I am shocked at my capacity for malaise, even with all the twinkling lights, cookies and yumminess. My blood sugars are great, even without the CGM, so I will settle into the flow and try to enjoy the rest of the holidays.
Saturday, November 10, 2007
About 20 minutes after I ate I realized what I did, so I grabbed a 30g carb instant breakfast and got my daughter out the door for her sleep over. As soon as I made it to my friends door I felt myself slipping.
We were touring around her new home, admiring this and that when we made it to her bedroom and I plopped down on the bed. I felt awash in fuzz. I pulled out my pump/CGM and I was 70 with a down arrow 30 minutes after eating. I KNEW I was in trouble, so I immediate drank 30g carb of OJ. I slipped to 60 in five minutes.
My friends were talking about shopping for houses and I just blurted out that I couldn't listen to anything anyone had to say and promptly planted my butt on the sofa. My friends looked at me and I was not all there. I was glassy eyed and pale. I looked at the CGM again, 52! Yikes! I drank almost another full 8 oz of OJ when I realized my Symlin was preventing me from absorbing the OJ properly. It wasn't working!
I remembered (some how in my twirly/speedy low mind) a discussion of serious lows with Symlin from a Diabetes CGMS group, or perhaps from TuDiabetes.com, but someone mentioned that Glucose tablets were about the only thing that worked with these severe lows because they could be absorbed into the blood stream even as you chewed and as they made their way to your stomach.
I ACTUALLY had a Ziploc baggies filled with about 15 glucose tablets and I started eating. Did I mention my CGM was showing a drop so fast it couldn't even alarm. I was 40 with a down arrow and and I know I was MUCH lower. I sat on the sofa and my friends are like, "Hey, whats the worst case scenario here?"
I realized that this situation COULD get bad; this kind of thing hasn't happened to me in seven years, so I asked my friend to go to my house and get my Glucagon kit. She was gone 15 minutes and just as she walked in the door, my blood sugar went to 42. YEA! This is after the whole bag of glucose tablets--maybe 15 or so.
It took me almost 30 minutes to climb over 100. I hit 198 as a high afterward, which was AMAZING as I probably consumed 300g carb. Ok, I exaggerate, but who really knows.
Scary! Mom's, don't let your guard down when you are struggling to get everyone else's life inorder. A valuable lesson for me to slow down and be more caring of my own diabetes needs.
MY CGM saved my life. I would have totally flipped out without SEEing what was happening as it happened. I didn't have my BG kit, so I am unsure of accuracy, but I AM certain that it was incredibly helpful. I was able to keep my cool KNOWING what was going on.
Another thing--I will always have glucose tablets in my purse!
Tuesday, November 6, 2007
I'm pretty happy about this. Life without readings is basically life, but with no idea what your blood sugar is. Yes, I am supposed to be taking it, but I have gotten so comfortable wearing the sensor all the time, I just can't get back to my meter.
I had a sensor that was really rough on me as my last sensor. I bled like HELL and hurt when I put it in. I read on a forum that the ones that tend to bleed have had longer life, so I crossed my fingers and hoped, but it failed after four days and I wasn't going to mess with it. I just wanted it OUT!
I am still bruised and I took it out almost two weeks ago.
Not sure why this happened, but thankfully is was the first in 30 sensors to do this kind of damage.
I've decided to wait on the CGM for my seven year-old girl. I have come to find out that it isn't the insertion that worries her most (although it absolutely does), but it is the alarms going off all the time. You know what? That happens frequently. It will really extend the amount of time she is thinking or being reminded about diabetes, which is a lot and for right now, in this first generation of devices, I am willing to let her have some space with it.
Also, when the CGM is made so that I get the alarms on my mobile device, that will be a whole other story. It is a lot of responsibility for a seven year old to deal with the various alarms. Trust me I TOTALLY understand the benefits for her and me, but for now...we are going to wait.
Friday, October 5, 2007
I forgot to put on my overbandage (Tegaderm) and I thought about it several times, but I needed hubby to do this too, and he was never around when I thought about it.
I was very careful getting dressed and going to the restroom, but this morning I was bending over to pick up the recycling and a seam in my jeans caught just under the edge of the sensor and pull it right off my fanny.
Tuesday, October 2, 2007
I am 38 and my insulin requirements have increased significantly in the past year and I am also gaining weight as a result. This does not make me happy, so I'm trying Symlin (which I hear is now FDA approved in a pen).
I have been on Symlin for about a month, using it once or so a day. It is NOT convenient to carry it around with you when you have been reliant on the CGM and your pump, so I usually get Symlin when I am at home eating.
I have to say, it is miraculous to see how it impacts my blood sugars post meal. It works well, but the best is that I can catch lows early and see exactly how it impacts my readings for hours after.
It has been a long while since I posted regularly, but in case you weren't sure, I LOVE having a CGM and I can't imagine life without it. I will live longer and I will see my child grow because I know answer to the only question that really matters with diabetes-- "What's your blood sugar?"
Sunday, September 9, 2007
Minimed offers Carelink Personal Therapy Management Software, a Web-based system designed to help you take information from all of your diabetes management tools – your insulin pump, continuous glucose monitor, blood glucose meter(s), and logbook – and organize it into easy-to-read charts, graphs and tables. It offers a logbook as well, which is "intended to assist you in analyzing impacts to your glucose control based on delivered Bolus insulin and external events documented in the Logbook."
PROBLEM--The Logbook only offers five "external event" options for documenting what is happening with your diabetes care:
Infusion Set Change
There is no place in this "therapy management software" to make general comments about your health or wellness, like when I have the stomach flu, a major deadline at work and I am stressed to the point of exploding or a sinus infection. My menstrual cycles causes HAVOC on my blood sugars from the day I ovulate through PMS and to the end of my period.
These are not random notes; frivolous nuggets of information. This information is about MY LIFE and every move I make impacts my diabetes control. My doctor, when he reads the files I saved from Carelink, has to know the facts when making recommendations about bolus/basal changes. If he doesn't see what is going on, it looks like I am just randomly out of control.
The very thing that makes the CGM so miraculous is that we get hard numbers 24/7. Numbers are virtually meaningless if you don't know what is happening to my body causing the blood sugar changes.
My doctor will get two weeks worth of reading through the Carelink and the first five days are relatively stable; it shows some lows, but there are notes related to exercise, so that makes sense. There was one super high with a note about an infusion set change, so that makes sense.
Then, day six shows blood sugars hovering between 150 to 200. No notes (after all this isn't related to the five logbook entries provided). Two days later they are high--over 200 all the time. A temp basal is employed, but again no notes.
I'm 250 at bed time on Day 12 and then Day 13 shows a huge drop in sugars; now below 70 all morning and not much higher after lunch. Day 14 is stable again--80-140 most the day.
What is a doctor supposed to do with this if he doesn't know I'm sick or have my period or had a bad batch of insulin or had a tough work week. There is no treatment recommendation that would make sense.
So, my point--I'm mad that the medical companies spend so much energy developing technology that can serve us SO well, but they forget about who is using it or what we have to do to manage the disease they are helping us treat. Who would release software that doesn't allow a user to make general notes. It is absoutely ridiculous!
October 3, 2007 Update
I e-mailed Minimed the night I wrote this post and I have not received a follow up beyond the message that my comments were being forwarded to the Marketing Dept. I sent them another message this morning requesting a response.
Tuesday, August 28, 2007
Then today, well actually last night, she was 92 at 11:00 p.m. My husband checked her at 2:00 a.m and she was 174. He didn't know she was 92 earlier, so he only did a partial correction. This morning she was 275. Hmmm. I pause, but figure since she didn't get the full correction last night, things might be OK, after all it is only day two of her infusion set. I correct and we head to school.
Morning snack 230, obviously not great, but lower than before. Lunch, 212, OK, lower and its a post morning snack number, but still not great. Afternoon snack, 427. So up to the school my hubby goes to give her a shot (we live a half block from school). She'll be home in 45 minutes, so we decided to wait on changing the infusion set.
Then I went to pick my girl up after school and her teacher was a basket case. She was SOOOO worried that she screwed up. She said, "I should have seen it coming."
I let her know in no uncertain terms that she cannot claim responsibility for my daughter's blood sugar numbers. It is her job to teach her, get to know her and keep and eye out for the symptoms we discussed for almost an hour and a half. I said that if she is worried at all, to ask my girl to take her blood sugar and to call me if there are issues. Her diabetes management is OUR responsibility and we will do our best to care for her with the information we are given each day.
Now, I should say that my daughter has been under the supervision of one Teacher's Assistant since she started Kinder at the school. It took some months of cajoling the administration, but everyone finally agreed that having one person watch over her care (we have no full-time nurse) was better than her, at five years-old, trying to figure out which of the five people at the school was supposed to help her three times per day.
This angel of a TA named Molly is loving and tender and watchful over my girl. She also cares for several children with Autism and Down Syndrome, but every single day at 9:00 a.m., 11:30 a.m. and 2:00 p.m. she is in the room watching blood sugars be taken, writing down the numbers, helping count and add total carbs, monitoring the pump entries and trouble shooting with me on the phone if there are issues or she just thinks my girl just looks a little off today.
Molly knows my child and loves her dearly and this system has worked great for us. I hate the idea of a teacher being responsible for teaching, managing nearly 20 kids and giving her full attention to my child's diabetes. I like the teacher being an active participant, but not the care provider. It works for us.
Tell me how your little one gets care while at school. What is your biggest worry? Do you trust the people/system caring from you child?
Thursday, August 23, 2007
Sunday, August 5, 2007
We saw rainbows EVERY day and I even drove through the end of one. I have never seen anything like this, but only caught one rainbow in photos.
I was SO sick of diabetes on this lovely trip. Every time we turned around either my infusion set was clogged or my girl had sand in hers, or my CGM was beeping constantly at me. She was low, I was high, or we were both low and Dad was pulling his hair out trying to understand all the drama. I wore my CGM on the plane with no issues, either in flight or at security. No beeps and no worries with 10 hours in the air.
Maui is the loveliest place I have ever been, even in a draught. We stayed upcountry, which to me is the REAL Hawaii. The place we stayed had an orchid nursery, along with a property full of bananas plants, papayas, lilikoi (passion fruit), tangerine trees, avocado trees and lemon treess. Lilikoi is the best thing I have ever tasted. I walked out of my room each morning with coffee and grabbed a banana off a bunch that was picked the day before. Sweet!
We also spent plenty of time at the beach. No matter what we did to protect our infusion sets, we had to change them every time. Salt water is to blame I bet. As it dries, the salt crystals clogged the holes. A guess, but probably a good one.
Speaking of beaches, this is where I sat for three days when I wasn't in the water.
I was at work when she called me to say that Daddy had checked her blood sugar; I could tell she had been crying. A wave of fear spread from the top of my head to the tips of my toes as I asked her, "What was it, baby?"
She was three, soon to be four and I knew in that moment that our lives were changed forever.
Friday, July 20, 2007
Monday, July 9, 2007
Mind, body and spirit are tied; our thoughts tend to be the leader, but sometimes body and spirit don't follow, because they know better! That is what happened when I quit my job as an executive director. My mind was on overload, my body was exhausted, but I kept pushing it anyway and my spirit was on vacation; but I had a job to do. One day, I changed my mind or my wisdom changed it for me. I heard my body's cries, my spirit raised the white flag and my mind finally yelled, "I QUIT."
I have spent a lot of time in my short life fighting what my body is telling me. In the past year I have learned that my body is a barometer to how thoughts make me feel. You know that "feeling in your chest?" It is telling you something; to take action or to stop acting. It is amazing when you listen to that feeling, you almost always end up on the right path.
Scott's recent blog got me really thinking about diabetes fatigue. We go through phases, yet we refuse to recognize that this is normal. We are in a constant state of judgement; we should be 'doing something" to fix ourselves. We should be taking better care of ourselves. We are constantly shoulding on ourselves.
Would we expect the tides to stay high, or the moon to stay full or for our periods to stop, just because we say so? How can we expect our emotional, physical and mental state to stay on an even keel all the time? It is impossible, but we "think" we can fight it, ourselves, our feelings.
The biggest gift I have learned is to recognize when I am at a low point; I'm blue, I'm tired, I don't really care about my blood sugars, and I am going to eat anything I want. In recognizing that I am there, I then give myself permission to ride it out, becuase this too shall pass. Doesn't it always?
If I start feeling bad (emotionally, physically or mentally), I say, "Hmmm. Self, your not feeling so good today. Your in a blue mood. That's OK." Seriously, I have to say this out loud to myself (although not in a crowded room). I have to remind myself that it is OK to be in this place.
What invariably happens is that the blueness doesn't hang around as long as it used to. I also recognize that I might need to do something nice for myself today, like take a walk with my dog, go swim or go buy ice cream or new shoes. I also may do nothing but lay in my hammock for thirty minutes.
I am more respectful of my physical, mental and emotional cycles and what I need to make it through every day. I still have bad days, but not so many very bad days. If I remember to listen to myself and honor the phase I am in, things iron themselves out more smoothly and more quickly.
Do you, like Scott, feel diabetes fatigue phases coming? How do you honor this phase? For instance, I quit taking my blood sugars (less an issue with the CGM, but I quit looking at the numbers), but I always make sure I check before bed or if I feel high or low. How do you go with the flow, but keep yourself safe?
Friday, July 6, 2007
I have the Minimed CGM and I upgraded her pump, so she could use it too. Well, today was going to be the day. We went to the Endo and we were going to "give it a try." We have a trip planned to Hawaii and I wanted her to have the CGM with the 5 hour time difference, the constant activity and 12 hours of inactivity during the flights. So much to worry about.
We iced her butt, we talked, we hugged, we iced, talked, hugged, cried, iced, hugged, cried, hugged, hugged, cried, talked, hugged and cried some more.
The damned needle on this thing is LONG. It is freakin' scary, even for me on the first try. On the Navigator, at least you didn't see what was about to be plunged into you.
So we tried again. More hugs, ice, tears, then squirming, then Daddy tries to help. He holds her with a hug and she twists away. He holds her tighter and she cries and twists some more and he gives up. I talk, she cries. I hug, she hugs, she cries and 45 minutes later; totally exhausted and late for a play date, we promise to try tomorrow.
For weeks I tried to convince her that this was going to be a good thing. Less B.G. checks (she says she doesn't mind checking her blood sugar), less worry for me (she really doesn't understand). I talked to my counselor about how to approach this, because she is simply scared it will hurt. My words mean nothing. I had friends with young kids that have the CGM talk to her, email her; she is NOT convinced it won't hurt like hell. Words mean nothing; I can not change her perceptions of what could be.
My counselor said I need to talk from the heart and I did. I told her that I love her more than anything on earth, and that as a mommy who loves her, I have to do everything in my power to keep her safe and healthy. We are fortunate to have access to the CGM and as a mom who loves her little girl, I have to utilizes the most powerful forces in the universe to protect and help her be healthy.
She seemed to buy that; understands that this isn't just about what I "think" is best. But it doesn't changed the fact that she THINKS this is going to be the worst thing ever.
Holding her down and slapping the thing on her butt was what we had to do with infusion sets early on, but it just feels SO wrong to me with my child. I breech a deep trust with her when we have had to resort to that. It has broken our hearts more than a few times.
So I have given her a big job tomorrow, her job is to try her very hardest to use all the tools she has to keep herself as calm as possible. We can't change how she feels, but perhaps (idealistic mommy here) she can help herself be a little less tweaked. Anyway, I am emotionally wiped out. She is playing up stairs and I'm going to go close my eyes.
She cried out, "How did this happen to me? How did I get diabetes?"
What's a mother to do?
Tuesday, June 19, 2007
I have connected with some really nice folks who either have the CGM themselves or for their child. No question asked, seems unanswerable. Keep in mind, this group is only for those currently wearing a CGM.
I think I am going to set a target date for my daughter and then slap this thing on her bottom. She is not convinced that this has any value to her and the fact that I want her to have it, only makes her resist it more. Is this six year-old behavior, or what?
Friday, June 15, 2007
Have a great summer friends and stay tuned for more info on the Minimed CGMS...I heard they are close to having one site for both the Sensor and the Infusion set; close as in maybe a year.
Feel free to post a comment and say howdy! I'd love to hear from you guys!
Monday, June 11, 2007
Keep in mind, that my comments and photos were of a version that isn't necessarily going to be released, and the things that will most likely change are size and calibration times. I love my Minimed Real-Time, but the Navigator was awesome when the CGM projected lows or highs -- really quite accurately. I look forward to the day I can upgrade to the latest technology, but I count my blessings every day I have the sophisticated technology I do have.
There will always be a tomorrow, as with computer technology, but to utilize the best the market currently offers is an awesome experience and My A1C is the better for it. Next steps are to get this and all CGMS covered by insurance, but for now I count my lucky stars...Oh! my blood sugar right now is 138 post dinner.
Thursday, May 31, 2007
I am ok with six or seven days, but I am really challenged to keep it on longer. Not becuase I have to, but becuase I love beating the system.
Try, try again!
Yea! So, I am on day eight with no irritation and accurate readings. I have promised to do comparisons of reading vs. finger tests, but I don't check my finger blood very often (bad girl).
My daughter is having a blast at Camp Sweeney, but I have to leave tonight and stay in Dallas, so I can go get her Friday morning. I have talked to her "Big Sister" at camp everyday, except today and she is well over her home sickness and doing really well.
Sunday, May 27, 2007
She is only staying for the Mini-Session which is Sunday through Friday morning, but for her first time, I think this will be perfect.
I feel so comfortable about the place that thinking about the possibility of her staying for the three week session next year amde my hubby and I giggle. We talked about hitting the Mexican Rivera for a week -- ALONE!
We haven't left our girl in any one's care for more than a sleepover and the idea of us getting some time alone is awesome. I just walked in the door from a very long drive, so I haven't had time to miss her yet, but I am so happy she is having fun and being cared for meticulously!
Saturday, May 26, 2007
From staff reports The Galveston Daily News
Published May 26, 2007
GALVESTON — A stem-cell cure for diabetes could be one step closer, thanks to a discovery at UTMB that is exciting the medical world.
Researchers at the Galveston facility have found a way to produce insulin by engineering the stem cells from umbilical cords rather than from embryonic stem cells.
Their discovery someday may help cure type 1 diabetes by allowing sufferers of the disease to grow their own insulin-producing cells for a damaged or defective pancreas.
The researchers announced their laboratory finding, which caps nearly four years of research, in the June issue of the medical journal Cell Proliferation, posted online this week.
Their paper called the process “the first demonstration that human umbilical-cord-blood-derived stem cells can be engineered” to synthesize insulin.”
At present, the discovery is extremely basic research, Dr. Randall J. Urban, senior author of the paper, said. “It doesn’t prove that we’re going to be able to do this in people — it’s just the first step up the rung of the ladder,” he cautioned.Urban, professor and chair of internal medicine at UTMB and director of its Nelda C. and Lutcher H. J. Stark Diabetes Center, said: “This discovery tells us that we have the potential to produce insulin from adult stem cells to help people with diabetes.”
The lead author of the paper, UTMB professor of internal medicine-endocrinology Larry Denner, said that, by working with adult rather than embryonic stem cells, doctors practicing so-called regenerative medicine eventually may be able to extract such cells from an individual’s blood, then grow them in the laboratory to large numbers and tweak them to direct them to create a needed organ.
In this way, he said, physicians could avoid the usual pitfall involved in transplanting cells or organs from other people — organ rejection, which requires organ recipients to take immune-suppressing drugs for the rest of their lives.
Huge numbers of stem cells are thought to be required to create new organs. Researchers could remove thousands of donor cells from an individual and grow them in the laboratory into billions of cells, Denner explained.
Then, for a person with type 1 diabetes, researchers would engineer the new cells to become islets of Langerhans, the cellular masses that produce the hormone insulin, which allows the body to utilize sugar, synthesize proteins and store neutral fats, or lipids.
“But we’re a long way from that,” Denner warned. The researchers used human umbilical-cord blood because it is an especially rich source of fresh adult stem cells and is easily available from donors undergoing Caesarian section deliveries in UTMB hospitals.It also avoids the moral and legal difficulties associated with embryonic stem-cell research in this country.
“However,” Denner added, “embryonic stem-cell research was absolutely necessary to teach us how to do this.”Embryonic stem cells have been engineered to produce cardiac, neural, blood, lung and liver progenitor cells that perform many of the functions needed to help replace cells and tissues injured by many diseases, the paper notes.
Among the insights into cell and tissue engineering gained from work with embryonic stem cells, it adds, are those “relevant to the engineering of functional equivalents of pancreatic, islet-like, glucose-responsive, insulin-producing cells to treat diabetes.”
In addition to Denner and Urban, co-authors of the study — entitled “Directed engineering of umbilical cord blood stem cells to produce C-peptide and Insulin” — included Yvonne Bodenberg, Jiangang Zhao, Margaret Howe and Ronald G. Tilton, all of UTMB’s Stark Diabetes Center and McCoy Diabetes Mass Spectrometry Research Laboratory.
They were joined by Julie Cappo, formerly of UTMB and now of Institut Universitaire de Technologie, Montpellier, France; John A. Copland, of the Department of Cancer Biology, Mayo Clinic Comprehensive Cancer Center, Jacksonville, Fla.; and Nico Forraz and Colin McGuckin of the Institute of Stem Cell Biology and Regenerative Medicine, University of Newcastle Upon Tyne, England.
Thursday, May 24, 2007
The sensors on this thing have NOT lasted me more than seven days. I get a bad sensor reading on the seventh day almost every time.
My daughter is going away to a camp for kids with diabetes. This is her first time and she is really nervous, but I think she'll have a blast. I missed out on camps as a kid with type one. I am sad about that, but hopefully my girl will have enough fun for the both of us.
She put on the camp questionnaire that her goals at camp are to have a lot of fun and to learn how to measure her own food. How cute is that!
Wednesday, May 16, 2007
Yesterday, I left my blood sugar kit at home and missed a calibration for 5 hours. This means the alarm goes off what feels like every 10 minutes, but it may be 30, and I want to toss the thing out the window. Common sense says, “Just check your BS first thing in the morning and last thing at night, but I forget, so no logical solutions are necessary.
Then the sensor ends, which means stopping, starting the thing again and then calibrating again, then calibrating again in six hours and again before bed. Meanwhile, I get a low reservoir alarm and my battery is getting low and I just want the thing to quit beeping at me. Oh! I put my pump on the left and not the right side, so I also wrestle with “weak signal” alarms.
By the way the Navigator had a HUGE range for transmission--10 feet at minimum. I rarely had a weak signal and in fact left the receiver upstairs in my bathroom all the time and still tracked readings. I put the Minimed pump under my back while I’m sleeping and I get a “weak signal” alarm; THAT is ridiculous.
A friend who started the CGM with me just left the thing off for a week and that sounds good to me because all the blessing I have received are slightly shadowed by frequent alarms of one kind or another.
I am really just not as deeply committed to my diabetes care as I thought I “should be.” I want to reiterate that this CGM is a GIFT and one of the best diabetes technological advancements since insulin. Sometimes I just don’t want to think about it AND I know that if I don't, I won’t do any permanent damage.
Saturday, May 12, 2007
Things I am doing:
- I have tried inserting the sensor at a deeper angle than 45, I put the sensor in my stomach (tried my hip and for me, it hurt like hell, but I hate infusion sets there, too).
- I let the sensor warm up about 30 minutes before I insert it
- Once it is inserted, I wait about 15 minutes before connecting the Minilink(to wet the cannula)
- I recharge the battery at each "Sensor End" which is every three days
Regarding accuracy. I have found this to be really accurate. I have discrepancies occasionally, but not on the norm. Overall, I am very happy with this and if I wasn't wearing it, I wouldn't know what my blood sugars are. As a busy mom, it is SO easy for me to blow off regular blood sugar checks, so this CGM is saving me (I do have a very good sense of whether I am high or low, but I would prefer to not be 180 all day, which is why I got this).
Send your advice my way on how you get longer sensor wear. I have a friend (medical professional) who has had three weeks of wear (still on her), but I have already tried everything she is doing.
Tuesday, May 1, 2007
I worked from then until about 10:00 p.m. to get her blood sugar above 55. I worked with her CDE on the phone and we tried honey, tiny sips of juice, the gels that taste like crap; we tried gum with about 8 grams of carbs, crackers, cheerios (honey nut) and finally resorted to a small amount of Glucagon injected to get her up over 100. We gave her some Phenergan to stop the madness; she only puked three times total.
I checked her blood sugars every hour last night waiting for highs, since that is normally what happens when she is sick. At 2:00 a.m. she was in the low 200s, so we gave a slight correction. At 5:30 she was 115, so I thought, “YEA, I can sleep a couple hours”, but at 7:30 she was 34 again. The good news is she drank her juice without argument or puking. The day has been fine from there, but that is the first time I have had that happen; even with 24 years of diabetes under my belt.
My daughter may never eat honey again.
Sunday, April 29, 2007
Yesterday we had the pleasure of meeting two other families living with T1. Moms with kids going to Camp Sweeney decided on a play date before the kids head off to camp and we met at Central Market (a lovely grocery with outdoor play area and great live music). The three girls played on the playscape and moms chatted about all kinds of stuff, but the focus was on diabetes and how we handle so many of the complicated situations we have with little ones with T1.
My girl was pretty nervous; she is six and a half and the other girls are eight, but they were so sweet and asked my girl if she wanted to play. Last night she told me how much she loved meeting the girls and one of the moms is pulling together another group before the one week mini-session at Camp Sweeney (Camp Sweeney is an overnight camp for children with diabetes that lasts one week for the mini-session and three weeks for the regular sessions). My girl surprised me when she said she wanted to attend.
Anyway, it is so nice to be developing a community of friendships with kids who have T1. My daughter also attends Camp Bluebonnet (also for kids with diabetes), which is a day camp about an hour from Austin and that is another place where these kids will grow their friendships. When I was diagnosed at 14, I knew only one kid with T1 and she abused her body. She gave up trying early in her adolescence and I didn’t like to be around her, because her attitude was so bad. I never got the chance to go to Camp Sweeney and I’m a little upset my parents didn’t encourage me to go. I didn’t understand at the time how cool it would be to hang out with kids in my same position.
Anyway, my daughter has the opportunity and I hope it grows healthier attitudes and wonderful friendships.
Thursday, April 26, 2007
She had the same issue, finger test 227, CGM 147 with two down arrows even. She reported two Cal Errors and a Bad Sensor yesterday, so she switched out everything feeling a little frustrated that the sensor only lasted three days. Today she was working out (with new sensor) and the CGM kept giving her LOW alarms showing a blood sugar of 40 for an hour. She tested every ten minutes while this was happening and got finger test readings of 140-240. What gives?
Today is sensor day four for me and I got two Cal Errors and a Bad Sensor. I wonder if we have a bad batch of sensors?
Wednesday, April 25, 2007
The women were fascinated. We even practiced counting carbs and there was a tray of fruit, cheese and crackers and I asked them which of the foods on the tray had carbs. They all agreed that the crackers and maybe the cheese had carbs, but they had no idea fruit was in that category; so we had the basics of nutrition talk.
One of the things I stressed was that their intuition was their best guide. If they think something isn’t right with the child, just check their blood sugar and find out. We talked a LOT about lows; what to look for, how to handle and what to do in an emergency.
I also stressed how important it is to CALL THE PARENTS if they don’t know what to do, or even if they need to know how many carbs are in a banana. I love getting calls from my sitter asking for clarification on something. It gives me a chance to praise her good decision making and also help them feel more comfortable about coming back for another sitting job.
I would love to know your stories around babysitting; what worries you most and what would give you more confidence about going on a date with your significant other. Having a child with diabetes can be so all consuming and we all need a break, so I am hoping a few more families living in Austin will get a chance to get out.
Photo by Tiffany Chapman http://www.freephotosbank.com/10489.html
Monday, April 23, 2007
So, before I took care of the business at hand, I exploded. All I wanted was to get a good night sleep, something which has eluded me for days and here I was at midnight, changing infusion sets, batteries, draining the last drops from a bottle of insulin AND setting my alarm for 2:00 a.m. See, I took off the Minimed REAL-time sensor last night because I was getting “trained” today on how to use the thing. I thought I would just take it off and let the battery charge, which turned into another reason for me to scream. Bad idea—I now had a 2:00 a.m. wake up call to be sure I wasn’t low (or high).
So, I screamed at my husband--really loud. I screamed at him for leaving the insulin in Dallas (yea sure, it was his fault), I screamed at him for being lucky and not to have to deal with this crap all the time, and I screamed at him for many things that had NOTHING to do with anything. I totally lost it!
For four days, at the hospital in Dallas with family, friends, kids, I was the strong one; I took care of everyone and kept things positive despite the fact that doctors were doing brain surgery. I nurtured everyone, bought lunch, talked to church members, played with the kids and smiled warmly and confidently at mom as she rested in the ICU post op. I controlled of my daughters diabetes, in spite of the fact she probably didn’t consumed anything all weekend that grew from the ground. I took care of everyone, but me.
I got angrier than I have been in many, many months—maybe even a year. But today I hugged my husband very tightly, I took a handful of vitamins, drank two glasses of my favorite tea, watched a show I really like and am going to bed no later than 10:30 p.m. I need me right now and last night was a screaming wake up call to give myself a freakin’ break!
Friday, April 20, 2007
Yesterday, I got a Cal Error about 30 minutes after my first calibration. On my second try, where my blood sugar was exactly the same as the first time (ruling out blood sugar fluctuations as the problem) I got a second Cal Error and then a Sensor Failed.
So, I ripped it off and started over. What surprised me was how soft the sensor canula was; much more flexible and thin than an infusion set. I had a small red spot at the insertion site, but it looked better within the hour.
Things are back on track, and I had eight days wear with my first sensor, so not too bad. I got some advice from Noel that inserting the sensor at 80-85 degree angle helps prolong the life. I tried it (I think), so we’ll see.
Accuracy has been good, but not as close as the Navigator. Maybe 40- 50 point spreads on occasion, but I think my Freestyle Flash runs high when I calibrate. I haven't done a comparison as I ran out of BD strips, so will do soon enough.
I have pictures to post, but I will have to do later.
Tuesday, April 17, 2007
When was the last time you did something nice for yourself?
We are all fabulous people and live with interesting and sometimes difficult circumstances, so do you ever take time to yourself—treat yourself to something special, just because you need it?
I have this beautiful Permission Granted box gifted to me by two friends that is filled with little bits of wisdom and invitations to do something nice for you. They say things like:
- Develop a collection of your own art supplies—and don’t let the kids use them
- Allow yourself to say NO!
- Visit a Farmer’s Market and treat yourself to your favorite fruit. Eat it on the front porch as soon as you get home
- Eat a dollop of cookie dough without feeling guilty (my FAV)
- Paint your toenails a vibrant color
This week, I stopped at my favorite Mediterranean grocery and bought a huge tub of tabouli, freshly made hummus and warm pita bread--right out of the oven. I LOVE tabouli, so I got in my car and made myself a huge pita filled with these amazing flavors. It was a mess! The explosion of lemon, parsley, onion and tomato is so intoxicating; It was a real treat for me.
"Self-care is not about self-indulgence, it is about self- preservation." ~ Audre Lord
Tell me, what have you done for you lately?
Sunday, April 15, 2007
I still haven’t tried the software, but it is web-based and I’m not sure how I feel about that yet. It would be nice to look at the data collected, but I just don’t have the time to figure it out right now.
We are having some interesting dialogue in the comments of my previous post. I’d love to hear more from you lurkers out there.
Buying this tool brings up lots of issues for me. It is expensive, it is cutting edge (for the moment) and I can’t afford it right now. My parents, however, can afford it and I have accepted their offer to buy this thing.
I have danced and danced around whether or not to BUY and I have had a list of excuses why I shouldn’t: the technology will be outdated in a matter of months; it just costs too much; the insurance won’t pay for it; I don't want to put this on a credit card,; what if I regret it; or what if it doesn’t live up to my expectations?
Each excuse I made in my head and with my husband seemed very valid, but I have come to realize that each excuse said the same thing, “I am not worth it.”
This shines through for a lot of women, especially around areas of self-care. Each time I ignore what my body tells me I need: more rest; a big spinach salad for lunch; a break from the computer and my work; a long walk; or ten minutes in my hammock; I am really saying to myself that I don't deserve these luxuries.
My father is thrilled when he hears I am avoiding lows and that I have only had two high warnings in four days. It feels so good to accept this without strings; this was a challenge. It took me weeks to think of this as a gift from them and not a burden to them. I am fairly pleased with myself right now and my body is thanking my every day!
Photo from www.freefoto.com
Thursday, April 12, 2007
I wish I could look back at more information stored in the CGM. You can only scroll back for several hours to get readings. The bar graph is supposed to sub for that. I haven't downloaded the software yet (One of my least favorite activities is downloading software), so I'm sure that will be where I get my good data. I love having this number all the time. I finally figured out the calibrations. See comments from my last post from Noel about specifics related to calibrations.
Curious if any other Minimed wearers are interested in having this thing. My greatest challenge is NOT pushing my daughter to get one. We are ready to order at any second, but I want this to be her decision. Just imagine the joy of going to bed and knowing an alarm will sound if she drops or goes high. The joy of sending her off to school or one of the random day summer camps we send her to, knowing all she has to do is look at her pump to know where she stands.
This is a worry eliminator.
Really wish the CGM had the smarts of the Navigator in terms of alarms. They have the best thing since canned beer with an alarm that warned you 30 minutes before a low or high. THAT, my friends, is cool and it worked 97 percent of the time. Once, I got a warning of an impending hypo and my sugar was at 125. I thought, I'll take care of that after I drop off the kids. How fast could it be falling. Well within 30 minutes I was at 60, five minutes later I was in the 50s, five minutes later, and after a juice, I was in the 40s. IF I had headed the warning, I would have drank a juice, yes at 125, and watched as I dipped to the 80s and then slide back comfortably into the 100s. This happened many times. I loved that, so Minimed, this is the goal for the model next year.
Let me hear from you. I know money is the biggest obstacle to getting this thing, but would you want it? What do you think about the technology. Does the idea of this kind of technology, perhaps even having a closed loop system, make having diabetes more bearable? I am ashamed that the CGMs and pumps costs so much; that this technology is so inaccessible to so many people. I am very fortunate. Very fortunate indeed.
photo from www.freefoto.com by Ian Britton
Wednesday, April 11, 2007
So far it is comfortable and reading steadily. One thing that surprised me is that when you use the Bolus Wizard, your blood sugar doesn’t automatically pop up; you have to enter it manually, which seems kind of silly. I guess they want me to check my blood sugar manually before taking any kind of action.
I keep my pump in the side of my underwear, under my clothes (obviously). I had my pump on my left side and at one point, while waiting for anumber to show up, I lost the signal from the transmitter. I think that is werid. Two feet away under some jeans and the signal couldn’t get through? The navigator read while I was down and it was upstairs inside the dirty clothes basket.
I moved the pump over to the right side and it seems to be ok.
Friday, April 6, 2007
I read the directions last night and I am pretty sure I can figure this thing out fine. I do have one small issue before I move forward. I was using the clear version of the 712 and I said, "Hey, let's try something new!" So, I ordered the "smoke" colored pump and now that I’ve seen it, I really, really dislike it. It looks so medical and pager like. I called right away and they are going to overnight me a clear one on Monday. You know, if I am going to look at this thing 30,000 times for the next four years, I have to like it. So, it is worth the wait for me. Fashion first!
Some thing I’d like to note Comparing the Real-time and the Freestyle Navigator:
Alarms: Navigator gave warning alarms for impending lows or highs, the Real-time only warns WHEN you hit a self-prescribed low or high. So, I may set my warnings closer to normal, so I can use the trend arrows to determine if I am headed Far North or South.
Navigator was more complicated to snooze, and had no variation in times for snoozing. This was especially irritating with high blood sugars. The Real-time has a default one hour snooze on high blood sugars and a 20 minute snooze on lows, which can also be customized to meet your needs. I love that.
Arrows: Navigator had northeast and southeast arrows, Real-time has a single arrow north or single arrow south, which I guess says the same thing. We’ll see when I get it on.
Transmitter: Real-time Minilink ~ Rockin’ Roll small! Rechargeable battery that lasts 14 days or more! It feels nice; like a smooth river rock or shell. Interesting how shape and feel can influence your feeling about something. It doesn’t feel medical; it almost feels like an accessory. Someone in marketing was thinking on this one and I, as a marketing guru, appreciate this. Navigator was large in comparison and very device-like. I am certain they will make this smaller and hopefully sexier.
Sensor: Can say too much because I am only looking at it, but the Navigator had disposable inserters and you didn’t see what was being plunged into you. The end result was a tiny; an itty bitty (VERY itty bitty) tube attached to a micro-chip going 5 mm under the skin. The Minimed Real-time is pretty cool looking with clear plastic and it is small on the surface, but the needle looks really long and think. The tube looks really long, but is inserted at a 45 degree angle. I like the reusable inserter, isn’t particularly loud, but we’ll see more when in use. I definitely like less waste associate with this system.
Reporting: Navigator had a wide variety of on-board reporting; 2, 4, 12 and 24 (I think this combo) hour line graphs and statistics (which I found useless). It appears, although I haven’t delved further, that you have instant access to a 3 hour and a 24 hour line graph on the pump for the Real-time. I thought a lot about this and it makes sense to me. This allows you to see immediate trends post meal, post high or low, etc. I was hoping to see a 12 hour, but really, I think the 24 hour will be fine, again, for spotting trends over the course of days.
Software: It appears there is a web-based program when you can upload your real-time info. I haven’t explored this further, but I have to say that I really liked the Navigator Co-pilot software’s visual and data based reporting systems. It also appears that the Real-time has similar data and charts available, but there were some nuances in the Co-Pilot that I really liked, so I am anxious to compare.
Look, if you are wearing a pump already I think this thing is amazing. Not having to carry two units around is a blessing for me fashion wise and also the pump is attached to me, which means I won’t loose it. If you are on MDI, the Navigator will rock your world when it comes out. Although I know Minimed has a separate CGM as well, I can’t say anything about it because I have never looked at it.
It is 40 degrees and raining in Austin this morning and this is coming off of multiple days hitting almost 90 degrees. Hope the Easter bunny can hide his eggs in the backyard tomorrow! Oh! I asked my husband for help with Easter bunny items this year and he bought lots of empty eggs and got a roll Sacagawea dollars and half-dollar coins instead of so much candy for our little T1 girl. He also hit the dollar store for silly little things, but we are mixing this with chocolate eggs and gum (couldn’t find sugar free gum eggs, too bad—8 carbs each). We quit buying sugar free chocolates etc, because they give you a stomach ache and are only a few carbs less than real chocolate. Any other creative ideas around this holiday are appreciated.
Photo by Ian Britton--(c) www.freefoto.com
Tuesday, April 3, 2007
The PRG for moms living with type one will meet once a month for six months and utilize the month-by-month themes and exercises in the book. Need a little support for your own self-care, check out a sample chapter titled, “Managing Your Energy: Setting Priorities, Saying NO and Asking for Help.” Good stuff in there; one of my favorite chapters. Also, I wrote a vignette at the back of that chapter (15 minutes of fame)!
Topics covered in the groups include:
· The Transformative Power of Self Care (on a physical, mental and emotional level)
· Good is Good Enough: A Mother’s Mantra
· Creating Your Personal Support System (much need for moms with kiddo's with type one)
· Life Balance: Insights and Strategies for Balanced Living with T1 Diabetes
Well, I am still waiting on my Minimed Real-Time Transmitter and pump upgrade. I really don’t like ordering something so important with a fill in the blank order form on the Internet. At least when you talk with someone, you know they got the order and there is a person accountable for processing it. Have made calls, but can’t quite figure out where we are in the process. I know my Dr. sent the script and paperwork.
I asked the doctor to note my hypoglycemia unawareness on the prescription, as this is my main reason for getting the pump. I am going to file a claim with insurance after I have the thing in my hands.
Tuesday, March 27, 2007
I was put off ordering for three days because I couldn’t order with a live person on the phone; it had to be an internet order. I think that is stupid. I am spending $2,000 up front and I can’t talk to a human about my purchase? BUT today a woman at Medtronic answered my call and she was delightful. She helped me figure out a BUNCH of stuff regarding my account and she got me to a person who could tell me how to do the order online and gave me some tips for moving the process through the doctors, etc. Customer service is important to me, especially with an investment like this.
So, I have to be honest. I haven’t researched this thing as extensively as one would think. I am buying a lot on faith and really good marketing. Seriously, the transmitter is tiny, the claims are good and I get to stay with a company I have been relatively happy with. Haven’t heard many negative comments, except from other manufacturers, but since it only lasts for one year, I figure if it doesn't live up to expectations, I can trade up for a new technology in a year. Perhaps the Johnson & Johnson Animas CGM/Pump, which is in trial right now, will be the next superstar.
I had a REALLY bad morning with my daughter. She was high all night; started high, gave an adjustment, came down a little at 2 a.m., so I thought she was ok. High again at 7 a.m. It was time to change the ((((((DREADED INFUSION SET)))))))!!
My kid is the sweetest, most loving child, but this morning I wanted to toss her out the window. She screams, squirms, wiggles, cries, sniffles, goes to the potty, sobs and hides under the coffee table when it is time to change her infusion set. The drama is all surrounding anticipation, she hate the sound of the inserter click and has very little to do with the actual experience. It took 45 minutes to get the thing on her and then I got a call from school that she was high post-breakfast. I was confident we had a good site, so I had her correct again, even though the pump said 0.0. She was great the rest of the day. You know, I kept my cool for 42 minutes; loving, caring, compassionate, but the last three minutes were where the window became a serious option for resolution. If anyone has really good advice for dealing with a 6 year-old and changing infusion sets peacefully, without threats of “no TV every again!” and emotional breakdowns, I would love to hear!
Photo from www.minimed.com (and I only wish that was my belly!)