Beyond frustrated

I wanted to recap my Endo appointment from today, but I don’t even know where to start. This was by far THE most frustrated I’ve ever been after any kind of doctor’s appointment.

My appointment was at 10:15am. I arrive at 10am and sign in. Fast forward to 11am and I’m still sitting in the waiting room, waiting to be called back. So I go up to the counter to ask how much longer (I’m using my lunch break for the appointment.) She tells me he’s running about 45 min behind, but she calls back (to where, I’m not sure) and then tells me that they’re on their way to come get me. (And if I hadn’t asked, would they have been on their way?)

About 10 minutes later, the nurse does come get me. I smile and ask if he’s running super late. She chuckles and says he usually runs about 45 min late, and sometimes it’s a 2 hour wait. (2 hours????)

So we get into the room and she saddles up to computer to ask me a laundry list of questions. How many times do you test your blood sugar a day? What was your fasting blood sugar today? Are you still on the insulin pump? Are you still on x,y,z medications?

The longer I sit there, the more brave I get, I suppose, because I chose that moment to mention that my bg’s have been running high- and that I’d called and left FOUR messages, and 1 email, with no return call/email. Asked her what should be my expectations for getting called back. She looked at the monitor and said “We only show you’ve called once.” Here we go. I assured her I’d called four times, and told her I could tell her the dates if she needed me to. She said “I don’t suppose it would matter at this point, since you’re here now.” By this point, I was wishing she’d already checked my blood pressure because I was sure it was starting to rise.

She asked me if I needed any refills on Rx’s – I told her that my insurance is no longer covering Humalog, so I would need a new Rx for Novolog (not happy about that, btw.) Nurse #2 then pokes her head in the door to tell me that they’ll do my blood work in the room after the dr is finished, to make sure I didn’t leave.

Nurse #1 leaves, and a few minutes later the dr comes. His turn to saddle up to the computer. Clicks here and there, types some things, has yet to speak to me or make eye contact. Then finally says, “Hmm. How are you feeling, Shannon?” I say “Well not great. Overall, fine, but I’m pretty frustrated about how high my blood sugars have been getting, for no apparent reason.”

He .. no lie …. tells me, “Well, I think since you’re overweight (which I am not overweight – could I stand to lose a few lbs? Yes, but I do not consider myself overweight) … I’d like to start you on a new medicine. It’s an off label Rx for Type 1s, and it’s mostly used by Type 2s, but I think it’ll help you lose weight, since you’re overweight, and I’ll have the nurse bring you some samples to start on, then she’ll get you the information to get it filled at the pharmacy.” (btw, the drug he’s wanting me to take is Farxiga – has any other T1s taken that? -just curious)

I didn’t know what to say. I’m not here to talk about my weight, jerk .. I’m here to talk about my blood sugars. And the fact nobody here returns calls apparently.

But wait, there’s more.

I bring up the unreturned calls. No response/acknowledgement. Just stares at the computer screen. I mention that in 2 of my messages I’d left, I had said I wanted to take a break from the pump for a couple of days to rule that out – but I needed his help with getting started back on shots, and I’d need an Rx for Lantus. He says “I always have my patients have Lantus on hand, in case their pumps ever malfunction.” I assured him that I have not an Rx for Lantus in over 8 years.

Then he went back to explaining the drug that he mentioned earlier, and how he thinks it’ll work well for me – you know, to lose weight, since I’m overweight.

I mention to him that I’m going to have to switch from Humalog to Novolog, and asked if there was anything I need to be concerned about – I know there is a difference in the tail. I’d had to switch once before in my 3rd trimester with the twins. He said they’re exactly the same, just a different manufacturer. *sigh*

Then he examines my feet. And in the middle of that, stands up and says he needs to ask his nurse about my Rx, and leaves the room.

And doesn’t come back!!! He goes into a patient’s room across the hall.

Wait, were we finished? I wasn’t. I had other questions for him. But never got the chance to ask.

Then nurse #2 comes in and says to grab my stuff, so we can go to the lab. Takes me into the lab, and the lab tech had NO personality. After she draws the blood, I asked her if they still email the results – told her last time they emailed it the next day (and Nurse #2 drew it herself last time, in the exam room). She said “I don’t know. I only draw the blood.”

After she draws the blood, she hands me a label and says it’s for my urine sample. I ask her where’s the bathroom, and are there cups IN the bathroom? She says “turn left, and it’s 2 doors down.” Left from this chair, or left from the main hallway? (valid question) She repeats “turn left, and it’s 2 doors down.” So I flipped an imaginary coin in my head, and went back to the main hallway and turned left. Sure enough, there it was… 2 doors down.

By the time I walked to my car, I was shaking. I didn’t know if it was because I’d gotten so frustrated, or if my bg was low. Probably both. I was 58, so I sat in my car and drank a juice box. Once I was ok again, I drove to pickup lunch then back to work.

But seriously. I am not going to PAY a doctor to make me leave feeling so incredibly dismissed and unimportant. Not to mention overweight. Let’s not forget that one.

So even though I just went through this last year, I’m back to Endo Shopping again. *sigh*

Posted in Uncategorized | Tagged , , , , | 14 Comments

Still troubleshooting

So I thought I was in the clear. Thought we’d figured out this whole mess on the high blood sugars.

Then Saturday night rolls around. And I had a low carb dinner. Check my bg 2 hours later and I was 385. Ugh. Didn’t get TOO concerned yet, but corrected with the pump. Then I laid down on the couch and fell asleep .. woke up at 1:30am (luckily!) and was super duper thirsty. Checked my blood sugar .. and see that darn “HI” again.

Went from feeling defeated, to pissed, to frustrated… on top of being exhausted – it was still 1:30am after all.

Pulled my site, corrected with a syringe, and put a new site in a new area.

Oh, and checked my ketones and they were “Moderate”. Awesome. Now to start chugging water. Again, it’s 1:30am. *yawn*

Checked every 20-30 minutes to make sure it was coming down. Finally by 3am it was 251 so I felt comfortable enough to go back to sleep, but set an alarm to keep testing.

By 7am I was 103, with no ketones.

What a long night. But still have no idea why this keeps happening.

This morning I called Medtronic to ask them what else can I do to troubleshoot (because I still have yet to hear from my dr)

We went through the laundry list of questions and I’m not receiving error messages. I do not see kinks or air bubbles, etc. The only odd thing is the last 2 times I shot up to HI, I smelled insulin beforehand – even though I could not see or feel a leak.

She wanted to do the high pressure test, but I did not have the supplies with me to put on a new infusion set (I know, I know.. ) so we had to skip that. I told her at this point I’d just like to get a replacement pump because these highs are so random and hit so fast, and this was the only thing left on the troubleshooting list – I’m at a loss what else to try. So I should have a new (to me) pump tomorrow morning. My current one’s warranty expires in October, so I should hopefully be able to upgrade to the new pump and CGM at that point.

Fingers crossed this helps! Otherwise I will likely go back on shots for awhile until I can get things leveled back out. My A1C on Thursday is going to suuuuuuuuuuck. *sigh*

Posted in Uncategorized | Tagged , , , | 4 Comments

Food … friend or foe?

“Any T1’s relationship with food is not like non-diabetics and it is rough.”

I was helping a friend who is a mentor with JDRF, and in turn asked another good friend who is a parent to a teenage T1 a question about raising a teen with diabetes, and dealing with rebellion, etc. That was one of her comments above – “Any T1’s relationship with food is not like non-diabetics and it is rough.” - Suzanne

Those words really hit me. And seems like the understatement of the year. In my 22+ years living with diabetes, I’d never really thought until recently how much my relationship with food is different than other people’s. I mean, of course I know I have to account for every bite of food I put in my mouth. But other things have been surfacing lately.

A couple of weeks ago, my family was sitting down to eat dinner and I told my husband that I would love to be able to just sit down with them and not do the last minute blood sugar check, math problems to calculate carbs, and punch numbers into my pump. (I do not typically pre-bolus, although I know many people do. YDMV.) It seems like they are always waiting on me to take their first bite (I live with all boys, so we are teaching them to be polite and not eat until mommy has sat down and taken her first bite.)

We had some baked goods sitting in the break room of my office this week and every time I walked by it, I felt a resentment feeling .. not sure if that’s even the right word. But I recognized it and I didn’t like it. I felt a twinge of “I would love to eat a piece of that. But is it worth it? How much insulin do I have left in my pump? Is it going to break down weirdly and cause me to be high later?” When everyone else just walked in and ate a piece without a care in the world, other than the occasional “I don’t really need these extra calories.”

For the record, I did eat it. Was it “worth it”? Not sure. But it tasted good in the moment. :)

Posted in Uncategorized | Tagged , | 4 Comments

Found it!

Update on my high blood sugars .. I think we’ve found the culprit. And by we, I mean I. Because my Endo still has not returned any of my calls, nor has the CDE (who I also emailed.) But I plan to discuss this when I go in next week for my 3 mos visit – and will ask what should my expectations be.

So if you were not born with a uterus, I’ll apologize in advance if this is TMI …..

But in addition to my diabetes, I also have PCOS (Polycystic Ovarian Syndrome.) It’s a chicken and egg situation with diabetes… common to have both, but nobody really knows which one causes which. I was dx’d with it about a year after my T1 dx, but I’d never had regular cycles. Maybe once or twice a year, if that. My dr back then put me on birth control pills when I was 18 to regulate me.

So I haven’t been on bcp in years and my cycle will just show up out of nowhere sometimes. Last month it showed up and never left. For FOUR weeks. Typically, my bg’s will drop a few days before I start and then run a little on the higher side but not AS high as they have been running lately.

I was still running super high on Monday this week but my cycle finally ended Monday afternoon. Tuesday, I woke up in range and have stayed there ever since. Coincidence? Not likely. I’d gone from running high 200s+ to being in range just like that.

Talked to my OB/GYN today (SHE actually returns phone calls- imagine that! lol) and she said I likely did not ovulate last month, which caused my hormones to be out of whack, which would have an impact on my BG’s. Or she said I could have a cyst that was jacking with my hormones. She’s not concerned about it at this point, because I seem to be back on the right track. But she said if it happens again that she’ll have me come in to run labs.

But at least I seem to be on the other side of this latest bout of high sugars. It still frustrates me that I tried everything I was “supposed” to and did everything “right” to no avail. But I’m glad it’s better now and I can move forward! Next time I have a high number, it better be because of a totally carb-worthy meal for which I not SWAG well. ;)

Posted in Uncategorized | Tagged , | 3 Comments

I’ve GOT this

In the 22+ years I have been diabetic, I can probably count on one hand how many times I’ve had to either miss/leave work because of my diabetes. Yesterday was unfortunately one of those days.

I was in the 160s before breakfast- I can live with that. But then around 10am I was at work and got up to walk down the hall and felt super sick to my stomach. Came back to my office and checked my blood sugar — 396. What the heck?? I had thought I smelled insulin earlier, but had already checked my site and my pump and nothing felt wet, and did not see any obvious leaks. So I bolused to correct (stupidly did not have my syringes with me) and finally by 10:45 I had to ask if I could go home. Which I hated to do that. But I was so sick to my stomach and could not even look at the computer monitor without feeling like I was going to be sick.

I actually cried on my way home. Not out of sadness, but out of frustration. I hated that I felt so out of control. I’ve been dealing with these highs for weeks now and have tried everything I’m “supposed” to try. And there seems to be no rhyme or reason for them.

I got home and was 280 so even though I was still high, I was at least coming down. I checked my ketones – trace. I drank a bunch of water, then laid down to try to rest (read: not throw up) while it was quiet before my boys got home.

Around 3pm I finally was 124 so I was feeling much better. The rest of the day was fine. I was able to take my boys outside to play and then I felt stupid for “wasting” the time I should have been at work.

I hate giving in to diabetes. And honestly, I rarely ever do. I probably tend to be too headstrong and I rarely ever let it get the best of me. But yesterday, it was diabetes-1, Shannon-0.

Not today, though. I’ve got this.

Posted in Uncategorized | Tagged , | 3 Comments

Call Me Maybe

I have been posting lately about my highs … which are not yet better :(

This has been going on for about a month now and I’m so over it. Nothing I’m trying seems to be working. Increased basals, new sites, new insulin, temp basals, etc. Last week I started to freak out a little. I tried calling my CDE – she was out of the office. I decided maybe I should go back on shots, just to rule out a pump malfunction .. so I left two messages for my new Endo but they never returned my call. :(

One of the main reasons I stayed with my old Endo as many years as I did was because he had his own practice, and it was a very small office and I could always talk to his nurse and get what I needed. He was not as hands on or proactive as I’d like, so I ultimately made the decision to find a new practice. I knew going into a large practice that I’d lose the one on one factor, but I didn’t realize how much I’d miss that till last week when they didn’t return my call.

I was very specific in the two messages I left- that my blood sugars had been very high and I wanted to try going back on shots for a few days. But that I needed direction from the dr because I have been back on the pump for 8 yrs now so I had no idea where to start with a sliding scale, and I’d also need an Rx for Lantus.

So the no returned call thing bugs me. I do have an appointment with him in 2 weeks but I do NOT want this to drag out another two weeks.

This morning, for example, I was in a fine range when I woke up. Bolused for my 28g for breakfast. And while I sat at work I started to feel sick to my stomach – checked my bg and I was 396. Out of nowhere. *sigh*

Something needs to change …. I just need direction on what else we can try??

Posted in Uncategorized | 9 Comments

Still high

I have unfortunately not seen much improvement since my last post about having so many high’s. I hate this. I am doing everything “right”. I’m not snacking, I’m not eating sweets – not that I can’t eat those things, but when I’m trying to troubleshoot highs, it’s best to eat things that I can easily calculate the carbs. And yet I’m still hovering in the 200s.

I spoke to my CDE on Tuesday and she suggested some troubleshooting ideas.

New site in a completely new area – well this sounds great, but after 22+ years I don’t have any “new” ares. lol I’d gone years avoiding my abdomen because I’d built up so much scar tissue over the years and the infusion set never sticks well there, but the last 2 or so years I’ve been back to that area and it’s been working great. But this morning I went back to my thigh, which is one of my least favorite places. To me, it’s not very comfortable, it doesn’t stick as well, and I have twin boys that will be 2 next month that climb all over my lap so it gets in the way. BUT I put it there this morning so let’s see if that helps. My hips and tush don’t do as well, either, because I’ve found that my absorption is not great. I may try my arms next, but I’ve never ventured there – my CGM works GREAT there but I haven’t wanted to deal with the tubing, even though I have several friends who love that spot- so we’ll see.

She suggested a new vial of insulin – so I opened a new vial this morning, also.

Increased temp basal. Again.

I’m not sure what else to try. The highs don’t seem to make sense. This has happened before when I’m getting sick but usually only for a couple of days, and then I’d start showing symptoms- runny nose, etc. This time it’s been weeks and nothing. Numbers aren’t budging.

I see my Endo week after next for my 3 mos visit and I’m already bummed because I know my a1c will be shot.

Come on, diabetes … cut me some slack, please!

Posted in Uncategorized | Tagged , , | 3 Comments