If you feel alone in your diabetes and wished you had a support group, DiabetesSisters has a free program on how to get a local PODS (Part of DiabetesSisters) group started. To see how it’s done, I interviewed Lori Veliquette and Wende Jorgensen, two Northern California women who, thanks to PODS, developed a close relationship as DiabetesSisters.
Nadia: Lori, how did you first become involved with PODS?
Lori: After I was diagnosed I didn’t know one person who had type1 diabetes. Initially I had been misdiagnosed as a type 2 and there were a lot of support groups for type 2s, but I just couldn’t find any that welcomed type 1s.
I did some research online and found a nonprofit organization called DiabetesSisters. They were having a weekend conference in San Diego for women just as I was at one of my lowest points in my life. My husband, who’s very supportive, said, “Go, I’ll pay for everything. Just get on a plane and go.”
This took me out of my comfort zone because I’d never traveled alone. I attended the conference for the whole weekend and didn’t want to leave. I was amazed being in a room full of hundreds of women who had type 1 and type 2 diabetes, seeing all these people with pumps just like mine, testing their blood constantly. With that many pumps beeping all day, we constantly had to ask each other, “Is that you or is it me?” We just didn’t want the weekend to end.
After coming home to the Bay Area, I felt alone again because the majority of my new diabetic friends were still in San Diego or had all traveled back to their homes. My husband suggested that I start my own support group. My daughter put flyers together for me and I mailed them to a few different doctors’ offices. When I realized this was going to be a lot of work, it occurred to me to start a group within the DiabetesSisters organization.
Nadia: Their website had a step-by-step formula for getting started?
Lori: Yes. The DiabetesSisters website has a tab that says, “Start your own PODS in your area.” I told them I was interested in starting one in Northern California since the closest PODS to me were in San Diego, 500 miles away. DiabetesSisters sent me a binder outlining their rules and information on how to promote a PODS group. I started putting together little packets, typed up 50 letters on my own, and mailed them to different endocrinologists and Certified Diabetes Educators.
Nadia: How long did it take you to get a response?
Lori: About a month.
Nadia: Were you discouraged when calls didn’t come in right away?
Lori: At first I was. When I’d come home and see one call, I’d get so excited. The San Diego conference had been in October, and it was at the end of October that I had started sending out my flyers. By December, I held my first PODS meeting at my house. I think it had about eight ladies. This last December, a year since that first meeting, we had 30 ladies. We no longer have meetings at my house because we’ve outgrown my home.
Nadia: Wende, how did you meet Lori?
Wende: We had the same CDE, who gave me one of Lori’s flyers. I had been a diabetic for 28 years and was at a point where my burnout had reached its maximum. It was time for me to do something. My A1c was out of control because I get panic attacks from other people touching me with needles, so I wasn’t getting regular A1c tests. I was actually out of compliance with Kaiser and was on a list to possibly lose my insulin pump.
That was the breaking point. I was given Lori’s flyer on a particularly bad day. I picked up the phone and called her. We ended up spending two hours talking and have become really close outside of PODS as well. Now when either one of us is having a bad day, we can text and complain to each other instead of our spouses, who I’m sure are tired of hearing about it.
Nadia: Both of you know better than they do exactly how you feel?
Wende: True. Lori will tell you that we can see it in each other a little bit clearer. If something’s going on with me, Lori’s usually the first to notice. For example, I have depression as a side effect of diabetes. It comes and goes. My mother noticed that it occurs around the same time as my diabetes diagnosis date. So, every year around October and November, my depression gets more severe.
Lori was actually the first one this year who noticed it. She said, “Have you ever thought about upping your meds?” I finally went to the doctor and talked to him, and went on an additional anti-depressant. It probably would have taken me longer to figure this out without Lori noticing and commenting.
Nadia: What symptoms do you have that your husband can see that you’re having a low?
He notices a lot since I have hypoglycemia unawareness. I don’t notice when my blood sugar’s low at all. I don’t notice when it’s high either, but the lows are really noticeable. He’ll ask, “Are you okay?”
Nadia: What kind of intimacy have you experienced with DiabetesSisters that you might not have experienced otherwise?
Lori: Well there’s one the thing I wouldn’t have experienced, or I should say Wende wouldn’t have, if we hadn’t met. She belongs to a gym, which I joined because I had a fear of getting a low blood sugar while exercising. We started taking water aerobics together. One day we were in the middle of doing aerobics and she wasn’t really following the instructor’s routine. She seemed confused and a little dazed.
Nobody else was picking up on this. Suddenly, she started to go underwater. I grabbed her and pulled her out in the middle of the session-not one person had stopped. She could barely walk. I got her inside the club where she could sit down and I got her a Coke. I went to get my glucometer, and when I tested her blood sugar, her reading was 30.
Nadia: Thirty? Wow!
Lori: It scares me to think if I hadn’t been there, what might have happened. I’d never taken care of a diabetic. Having diabetes is different than taking care of someone with it who doesn’t necessarily want help and is saying pretty mean things to you.
Nadia: You had never been on the other end, hearing what it can sound like when you’re having a low blood sugar. Wende do you remember what you said?
Wende: No, not at all. The last thing I remember was getting in the pool for class. I’ve always wanted to know what it was like to experience a low blood sugar from a helper’s perspective. I have to say I’m a little jealous that Lori got to see what it’s like.
Lori: When Wende finally started coming back, she got a little ornery and angry. But I think it just made me more aware that with this disease, we need to really watch out for each other. Nobody understands it as much as we do. We made a pact that if we’re going to do water aerobics the other one has to be there.
Nadia: Wende, did you get a CGM after this incident?
I’m on a CGM now. Not directly as a result of that one incident, but more for my hypoglycemia unawareness. The CGM, I have to say, has made a world of difference. This is a bit off topic, but I kept hearing about people who said they could live without their pump but they could never live without their CGM. I always thought, “Why do you have to have another thing attached to your body?” Don’t get me wrong: I love my pump. It was actually a wedding gift from my endo.
Nadia: Your endocrinologist gave you a pump as a wedding gift?
Wende: Right before my wedding I said I didn’t want to have to take a shot in my wedding dress. I was on five shots a day at the time. So, the week before the ceremony, I got my pump as a gift. I loved it from the start. I thought it was the greatest diabetic invention in the world. But then I kept hearing people saying, “Oh, I could live without the pump. I could deal with shots, but I could never live without a CGM.” I’ve been on the CGM for a month, and I agree: I couldn’t live without it.
Nadia: If I had type 1 diabetes, I’d definitely be on a CGM to see which way I’m trending.
Wende: That’s all it’s good for. You can’t rely on the number it’s giving you. Most of the time mine is about 30 points off. But the arrows are dead on and it also alarms. I have found, at least for myself, that where I used to range between 30 and 450 in a day, I now probably range between 70 and 220.
Nadia: That’s great progress.
Wende: Because I can see it, and it vibrates if I’m high or low. Alarms are going off in the middle of the night, which my husband didn’t love at first. But he’s getting used to it and he appreciates them now. If I go to bed under 100, I know that by 3 o’clock in the morning I’m going to hit 40. So I don’t go to bed under 100 anymore.
Nadia: What do you think is the greatest benefit to joining a PODS meet-up group?
Wende: Other than having people who understand what you’re going through, the biggest difference for me is that even though I’ve been diabetic so long, I’m still a little scared to change basal rates or other pump settings. But having this group of women who all do the same thing, especially ones who do it on their own, is encouraging. We have CDEs in our PODS who have diabetes, so this isn’t just women experimenting on their own without professional assistance.
Nadia: You mention that sometimes women talk about their partners. Are they allowed to come to PODS meetings and meet separately?
Lori: The PODS group is for the women only. What’s said in the group is just between us. We invited the men to our group one month because Brandy and her husband Chris were in town and wanted to see the hotels we’d picked for the 2013 San Francisco conference. It just so happened our PODS meeting coincided with their visit, so I opened up the group to spouses and partners that one time.
Nadia: Thank you both for being so candid about your diabetes. How can our Northern California readers contact you?