Disconnected

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I stared at my CGM, the screen reflecting my own feelings lately. ??? The 3 question marks indicating that the receiver can’t establish a reading from the sensor, that it’s confused, lost…disconnected.

The week leading up to an endo appointment has become a time of reflection. I’m forced to look back on the past 3 months and evaluate how I feel I’ve done with managing my diabetes. At my appointment, my A1c number will give objective evidence to these months, but for now, it’s my own subjective assessment.

I don’t need to see my A1c number to know that the past 3 months have not been great. I see my glucose numbers each day, each hour, each minute. I can’t escape the numbers. But the feeling that I have is hard to describe. Unmotivated? Stuck? Apathetic? No it’s not quite that. It’s more…disconnected.

How do I become disconnected from a chronic disease that I literally think about constantly? From the medical devices that are physically connected to be 24/7? I’m not quite sure. Perhaps it’s just day after day, going through the motions, hoping for different outcomes, disappointed when it’s more of the same.

Maybe I’m burnt out. Maybe I have lost some motivation. Maybe I’m just tired. But after years of going to each appointment with the same goal and continuously falling short, something has to change.

But change takes work and it’s hard. Maybe it’s changing what I eat to avoid blood sugar spikes. But I love food, I don’t want to change. Maybe it’s being better about carb counting and bolusing on time, but I’ve tried, how is this time going to be different? Maybe it’s asking about the use of drugs for type 2 that have been shown to help type 1s, but I’m nervous about the side effects and using drugs that haven’t been well studied for type 1s. But most of all, maybe I’m afraid of failing. Because what if I try, like really try, and I still find myself in this same spot 3 months from now? What does that mean for my future? What does it mean when I’m ready to start a family and need to get my A1c much lower than where it is now? What if I can’t do it?

I know that I can’t let fear hold me back, I know that I can’t be afraid to try. And that “failing” isn’t really failing at all, it is just a lesson on what will work for me and what won’t, all ultimately getting me closer to my goal.

Hopefully my endo can help me rebuild these connections and face my fears. All I know is that I won’t succeed unless I’m willing to try.

What my diabetes has taught me about life’s rough patches

There will be good days and there will be bad days. It’s inevitable. And it’s okay. The bad days are what help you appreciate the good ones.

Tomorrow is a new day. Each day is an opportunity to start over, to begin fresh. Yes, it may not be any better than the day before, but the positive potential is there. A day of bad blood sugars today doesn’t mean tomorrow will be bad too.

Some things are just out of your control. I can’t account for every high and low blood sugar, I can do everything “right” and it still in unpredictable. Same with life’s events. Some things you can’t control, but what you can control is your response and how you cope with it.

To feel better often takes effort. I’ve gone through burn out with my diabetes, where I just wanted to ignore it. To stop carb counting, bolusing, monitoring what I’m eating, stop thinking and just live. But you can’t, because you end up feeling worse. Rough patches will pass with time, but you don’t want to be stuck in a downward spiral of self-wallowing and unhealthy behaviors. Reaching out to others, getting enough sleep, getting out of the house and not eating only junk foods can help keep you from sinking further into despair.

Some things in life aren’t fair. They’re just not. And they suck. You can get angry or sad or frustrated. But at some point you have to accept it and move on the best you can. It’s not fair that I have an expensive, complicated, incurable chronic disease, but I do and life goes on.

People won’t always understand what you’re going through or know how to help.  Some people will try to help and be there for you, some people will say things that make you mad, some people will be ignorant. But most people have good intentions. If you need support, you can’t assume people know what to do or say. You need to be explicit.

There’s no quick fix. It takes time. It takes effort. It’s a life long process. Every single day with type 1 diabetes requires vigilance and care. There will continually be challenges and low points in life and while you can learn positive ways to cope, to be resilient, you can’t just snap your fingers and instantly feel better.

Your feelings are valid. We all have different responses to life’s events. Your response may be different than someone going through the same thing, but what you’re feeling is completely acceptable and normal. Own your experiences and your emotions and use them to fuel positive action.

You’ll get through this. You’re strong. You’ve made it through life’s challenges before. Yea, it may have been hard, you may have struggled and even failed. You may have needed help. There may have been tears. But you persevered. And you’ll get through this too.

 

A scary situation (told using bitmojis)

I recently found myself in a very scary situation as a diabetic. Let’s just say that I was about to drive myself to the hospital for my blood sugars, which I’ve never had to do before. Spoiler alert: I didn’t and everything is fine now, but it was still a frustrating and slightly alarming afternoon.

It started at my company picnic. It was a beautiful spring day and I was happy to be outside with my coworkers.

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But my blood sugar was high and rising fast.

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I had bolused for my lunch and figured it would eventually come back down. I was away from my CGM playing frisbee, running to catch it, and figured the activity would probably help lower it too.

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Not a frisbee, but closest I could find

After playing for close to an hour, I checked my CGM, but instead of my blood sugar going down, it was still going up.

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I corrected for the high giving more insulin and headed back inside to the office. My CGM started to point downward and I figured I was in the clear.

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As soon as I got back to my office, I went straight into a meeting. I sat there trying to pay attention to what was being said, but I was starting to feel nauseous and out of it. I felt so sick, I knew something had to be wrong.

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Luckily the meeting was short and I immediately checked my blood sugar number again, this time it had risen to over 500! I was shocked!

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I texted my dad and my sister (who is a nurse and soon to be a nurse practitioner) and filled them in. Then I rushed to the bathroom and gave myself a shot and changed my infusion set.

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I went and told my manager that I had to leave work early. I decided that if in one hour, my blood sugar wasn’t clearly going down, I would drive myself to the hospital. If all the insulin I had been giving wasn’t working, I knew I needed to get help.

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I got home and checked my ketones, which looked fine. Then I got a large glass of water and laid down on the couch, praying that my blood sugar would start to drop. About a half an hour later, I started to get some good news. And as it continued to fall, I gave my dad and sister a play-by-play.

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I was slightly bummed that I was missing my weekly bootcamp workout class, but I was just so relieved that my blood sugar was coming down. And as it dropped, I started to feel better physically too.

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I continued to lay on the couch, taking it easy as I watched my blood sugar fall. Soon it was dropping double arrows fast.  I started to worry that I may have given too much insulin and I was going to crash, which has happened many times before. I just wasn’t in the mood to be caught on a roller coaster of highs and lows.

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But finally, after about a total of 3 hours later, my blood sugar was almost completely back to normal and I could finally relax.

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So everything was fine and life went on, but it definitely was an experience that I hope never happens again!

Diabetes Blog Week Day 2- The other half

Diabetes Blog Week

Today’s topic: We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

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I’ve experienced all the emotions above as well as many others. I have good days where I feel proud of my blood sugar control, encouraged by the support that I receive from my family, friends, and online, and optimistic about the future. And I have bad days where I feel frustrated by my roller coaster of blood sugars, tired of having to constantly think about and manage my diabetes, and fearful about future complications. And sometimes when the emotions get to be too much, I become indifferent and burnt out.

What helps me when I find myself in a funk is to have outlets where I can essentially vent. I know that when I blog about my frustrations, that I’m not alone, and that others have been there too and got through it. When I talk to friends and family, they may not completely understand what I’m going through, but they validate my feelings and listen to what I have to say.

Finally, there are 3 phrases or mantras that have really helped me find perspective and get through tougher times.

You can find more The Other Half of Diabetes posts here.

Blackout

I know better than to compare a fictional story to real life. But yet I found myself doing just that, trying to comprehend the experiences of a character that were so foreign to me, but unfortunately probably familiar to many others. In the book, the character is an alcoholic, often drinking so much to help her cope with life that she blacks out. Multiple times she wakes with a feeling of guilt, knowing that she did something wrong, something embarrassing, something out of character, but not being able to remember what she did.

“I wake with a crushing sensation of wrongness, of shame, and I know immediately that I’ve done something stupid,” she says.

I’m not going to get into the struggle and devastation that alcoholism can cause for the person and those around them. That is not what this post is at all about. What I do want to focus on is the fact that what troubled this character was the need to remember these missing memories so that she could take full ownership of them and their consequences. Without being able to remember what the character had done during those missing hours, she felt unable to take responsibility for her actions and to feel fully accountable.

As she says, ” I know what I’m responsible for, I know all the terrible things I’ve done, even if I don’t remember the details- but I feel distanced from those actions. I feel them at one remove.”

Why did this aspect of the book strike me so much? It’s not like I could relate to the character. In fact, I think it was exactly my inability to relate to the situation that stuck with me. It’s not that I haven’t made mistakes that I’ve felt guilty for. I’ve regretted or questioned decisions, but I’ve always been able to remember what led to them and fully take responsibility for them. And until I read this book, I’ve completely taken this simple fact for granted. While we do make mistakes and have regrets, we are still in control of our actions. When you take responsibility for what you’ve done, you can learn from it, put it behind you, and move forward.

A couple months ago, I made some changes to my lifestyle. I started following a nutrition and exercise plan. And for 2 months I stuck with it for the  most part. I saw changes in the way my body looked, I lost a little weight, I became leaner and stronger, and my A1c dropped, I felt good. And then the holidays came. With the countless holiday parties, eating more meals out, going on a cruise, and being off my normal schedule, I started making less healthy decisions. I ordered dessert, I snacked into the evening, I ate the fries instead of switching to a healthier side, I grazed through parties eating even though I wasn’t hungry. I got off track.

About a week ago, I woke up in the morning full of regret. On my CGM was proof of the decisions I made the night before, my entire night dancing above the 180 line, dipping and rising. My stomach not quite itself, I knew I was still feeling the effects of my earlier choices. But unlike the character in the book, I remembered what led me to this point. I could recall the unhealthy decisions that I had made. But instead of feeling defeated, I felt empowered! Because by knowing what got me to this point, I also know what I can do differently next time. I can prevent this feeling. Your memories and emotions, as negative as they might be, don’t need to be what holds you back, they can be motivators to propel you forward.

This past week, I got back out my nutrition plan and started fresh. I know that I’ll slip up from time to time, but I’m on the right path. And the regret that I felt, while not desirable, was a catalyst to get me back on a healthy path, and for that, I can’t regret my regret.

To fast or not to fast?

Yesterday was Yom Kippur or “Day of Atonement”, one of the holiest days in Judaism. On this days, Jews around the world atone for their sins and ask forgiveness from those they have wronged over the year and from God.

One of the traditions of Yom Kippur is fasting. The idea is that you are afflicting the body and soul with an act of self-denial as you repent for your past sins. One is meant to put aside physical desires and instead focus on spiritual needs through prayer, repentance, and self-improvement.

While the Yom Kippur fast is an important ritual, it is never at the sake of jeopardizing one’s health and so Jewish law says that people who cannot fast for health or other reasons, should not fast.

Now this post isn’t meant to pass judgement on anyone’s traditions, beliefs, or decisions. I completely respect and understand anyone’s decision to fast or not fast, regardless of health reasons. I respect the manner in which anyone observes this holiday or their choice not to. This post isn’t about anyone else besides me. It’s about my own personal experiences and struggle.

That being said, I’ve always had a hard time not fasting on Yom Kippur. Over the years I’ve tried many different techniques. Some years I fasted as long as I could until I dropped low and then broke the fast. Other years I intentionally let my blood sugar run high for the day so I wouldn’t drop low. Some years I didn’t fast at all. And while I knew that having type 1 diabetes “excused” me from fasting, I approached this Yom Kippur with an uneasy feeling and internal struggle.

Why was I so conflicted? After all, Jewish law is very clear that not fasting for health reasons is not only completely acceptable, but encouraged. After giving it some thought, I came to the conclusion that it came down to two main points.

  1. To me, I didn’t want it to appear like I was using my diabetes as an excuse, or a way out of something undesirable. I’ve been very careful my whole life to not use my diabetes as an excuse for special privileges when they weren’t necessary or to let my diabetes stop me from doing something that I wanted to do.
  2.  While I know this is not really the case, I could never shake this feeling that somehow I was missing an essential component of this holy day by not fasting, that I wasn’t fully experiencing it in the way that I should.

With this knowledge of where my struggle was coming from, I went on a search for something that could help me come to a sense of inner peace and acceptance over this issue. The internet is a great place, and with a little searching, I came across two websites that had just what I needed to hear.

The first came from Everyday Health and was an article on Fasting Safely With Diabetes. In it, there’s a quote that says, “In the Jewish religion, it is considered a mitzvah (a good deed) if one must eat for health reasons.” What was most striking is the idea that eating for health reasons is not just “acceptable” but is actually a good deed!

The second confirming text came from an article from aish.com in the Ask the Rabbi section about Eating on Yom Kippur. The article stated, “Just as on Yom Kippur it is a mitzvah to fast, in certain circumstances the mitzvah is to eat on Yom Kippur. Even if the person wants to fast like everyone else, God sometimes gives a unique test- in this case to eat on Yom Kippur, to remain healthy and serve God.”

What I took from this article was this idea that for people who are healthy, fasting is their challenge. But for me, someone who would really like to participate by fasting but shouldn’t, my challenge is actually eating on Yom Kippur. My test is different, but not inferior, it is still a mitzvah!

Finally after many years, I began to understand my situation differently. To see that my participation in this holy day may be different, but is not any less meaningful. Not fasting on Yom Kippur is truly one of the few things that I’ve had accept that I can’t really do with my diabetes. But this year and from here forward, I embrace this fact.  When I was able to come to a place of inner acceptance, I knew that I would be able to defend my decision to not fast not by feeling inferior, but by feeling proud!

But fasting or not, I still love the break fast food!IMG_8413

Insurance frustrations

bubbleDuring the time that I was on my parent’s insurance, I was pretty much removed from the entire billing and insurance process. I was lucky in that my dad took care of the paperwork and the phone calls. I lived in my nice little naive bubble where all I worried about was going to my appointments, ordering my supplies, and taking care of my health. I didn’t worry if a certain device or procedure was covered by my insurance, everything just magically worked out. Oh what wonderful times those were.

Then I got a job and my beautiful bubble popped.

I know that I’m very fortunate that my job even offers insurance and that it has pretty good coverage. However, if you ever want to simultaneously raise your blood pressure while feeling like you want to bang your head against the wall, try calling your insurance company to argue a claim.

Take a few weeks ago as an example:

It all started with an email notification that I got that a new claim was available to view online. It was about my most recent routine appointment with my endocrinologist. I followed the link to an EOB. I feel like I should be able to say that I speak “Insurance” since it often feels like I’m reading a foreign language while trying to decipher what is being said. I noticed that the entire bill was higher than the past 2 appointments. Scanning the paper, I found a tiny number leading to the appendix with the following text:

Our payment policy limits the number of times this procedure is allowed and that limit has been met.

Ummm huh??? I went back up to see what billing code this was referring to, thinking perhaps it was some unnecessary test or blood work that I may have unintentionally duplicated.

GLUC MONITOR, CONT,  PHYS I&R 95251

Like I said, a foreign language. But whatever it was, I was being charged the entire amount of $120. But if it has to do with glucose monitoring, it probably is necessary. I called my insurance company. The woman explained that the billing code that the limit was referring to was 95251 (side note: I did some googling and this particular billing code can range from $35-$350!). With some simple googling I determined this billing code was referring to the following:

95251: Ambulatory continuous glucose monitoring of interstitial tissue fluid via a subcutaneous sensor for a minimum of 72 hours; interpretation and report.

Essentially it’s downloading my CGM and interpreting the numbers. At this point I was starting to get both confused and angry. I checked the EOB. I was also charged for an Office Visit so it’s not like it was the only thing they were billing for. But the part I was getting angry about was that downloading and interpreting my numbers is really all my appointments are since checking my a1c and blood work happens at an entirely different time and facility.

I called back the insurance company, asking what the limit of visits are for that code: 2. I attempted to calmly explain that the standard of care for a type 1 diabetic is seeing their endo every 3 months, so 4 visits a year. How could they only be covering half of them?!?!

The insurance woman explained that I’m going to need my doctor to call the patient management team at the insurance company and get the additional visits pre-certified ahead of time for them to be covered and additionally to appeal the charges from the last visit.

Ugh. Really??

At this point I’m just annoyed. But I’m more annoyed at the idea of having to pay so I call the health system starting with their billing department. After explaining the issue, I was told that the doctor will have to call and that it’s something that the billing department can’t take care of. Okay fine.

I call the doctor, the receptionists says I should talk to billing. No, billing said to talk to the doctor. At this point I’m ready to hit my head against the wall. My doctor is not available so I leave a message explaining the entire issue. The receptionists assures me she will deliver the message.

A week goes by. No response.

I call back. The person on the phone looks at my file. He tells me that it looks like it was seen and sent to billing. The person on the phone offers to have someone from billing follow up with me. Yes please.

I wait.

A few days pass and I finally get a message from someone from Billing. “I see the message in your file,” she says. “It looks like they’re talking with someone at the insurance company. I can call you back when I know more.”

Ughhhh.

A few more days. “It looks like they are taking off the charge for your most recent appointment.” “That’s great,” I respond “but what about the future appointments? I have one coming up in a few weeks. Are they going to charge me again? The whole point was to get them pre-certified.” “Oh ummm, well I can tell them to look at the September appointment. You’ll have to call ahead of time for each appointment and tell them to contact the insurance company.”

Are you frickin kidding me?!?! Why is this so circular?!?! I thanked her, not sure exactly what was accomplished besides not being charged for the most recent visit. However, the fact that it took almost 2 weeks does not give me much hope if this is the process I’m going to have to go through twice a year, every year!

The funny thing is, I would consider this a successful encounter compared to some of the other arguments and conversations I’ve had with the insurance company. But it’s amazing to me the number of phone calls it takes to accomplish even the simplest task. Working in the health care field and having a masters in public health, I consider myself to be more knowledgeable than perhaps the average person in navigating the health care system. And if I found this process to be arduous, I can’t imagine that many people with much less knowledge are being successful in their efforts.

If anything, I’ve become a much more assertive person through this process, but really I just wish that the whole system was fairer and simpler for everyone.

 

 

 

 

 

No excuses

Ugh it’s been too long! I feel terrible for neglecting you for so long! A lot has happened that I want to tell you about, and I will…eventually. But I feel like I need to rewind to the first notable thing that happened since my last post.

About 2 months ago I had an appointment with my endocrinologist. This is not unusual, I have one every 3 months. But I knew this appointment would be different.

When I was younger, I used to say on the day of my endo appointment, “I’m going to the doctor to get yelled at today.” Now my doctor wouldn’t really yell at me, but I knew that I wasn’t doing that well and that they would in a nice and appropriate way, tell me to get my shit together.

I approached this appointment with a similar attitude. I was dreading the appointment. The previous three months were just not great. My numbers were all over the place, but mostly too high. Trust me I had my excuses ready…sicknesses, bent infusion sets, a bout of insomnia. But deep down I knew those really weren’t the reasons for three months of high numbers. It was more like apathy, laziness, and lack of discipline. I knew that really I only had myself to blame.

I got my A1c back. It was high. The highest its been in 3 years. In fact it was the same number that prompted me to start this blog in the first place and make some major changes.

I wasn’t surprised, but I was disheartened and disappointed.

My endo looked at me. “So what happened?”

My excuses were on the tip of my tongue. But I held back. I knew I had to take responsibility for my actions (and lack there of) and for the consequences of them.

“It’s just been a bad three months.”

She nodded. “Do you want to make some adjustments or do you want to try again?”

“I’ll try again.”

It wasn’t a good appointment. But I have to admit, in many ways I feel proud.

I’m proud of myself for not making excuses, I’m proud of myself for taking responsibility for my health. I’m proud of myself for only momentarily becoming discouraged, and instead vowing to “try again” and do better next time. I’m not proud of my A1c, but I know I’ll get back to what I was.

I found a quote online, “Every set back is a set up for a come back.” Well watch out, because I’m making a hell of a come back!

Explanations

I’ve learned over the years that I’m someone that craves explanations. I want things to make sense, I want to know why something may have happened. I need logic.
Granted, I don’t always need to know exactly why something happened, sometimes we just don’t know, but I find myself still wanting to make an educated guess. And when there is a disconnect between what happens and a proposed explanation, I get frustrated. “That’s impossible! There’s no way that what you just said could have caused that.” Those close to me are all too familiar with my need for logical conclusions, and my irritated response when I’m not satisfied with the answer.
But I know we don’t always get answers. Why do bad things happen to good people? Life is random, mysterious, and unpredictable at times, it’s part of what makes it both devastating and exhilarating. In many cases I’m perfectly content with the explanation that sometimes things happen that there are no logical explanations for, it’s the universe at work.

My diabetes falls somewhere in the middle.

Too many times I’ve found myself frustrated with a high or low blood sugar, not understanding why it happened when it seemed that I did everything “right” to avoid it. I rack my brain trying to come up with a logical explanation, but sometimes there are just too many variables to consider. Was I really that far off in my carb counting? Is this a delayed effect from the exercise I did earlier? Is something wrong with the insulin? Is there a bend in the tubing? Is the insulin not being absorbed at the site? Am I getting sick? Am I stressed? So much to consider, I can’t always draw a one-to-one connection for a high or low.

Last week I was shocked to see a blood sugar that was over 500. A rare event, my first thought was why?? Well really it was “Oh f*ck” but then why did this happen?!? I ran through the list in my head as I tested my ketones, gave myself a shot, and changed my infusion set.

You don’t always get answers for everything in life. I’ve learned to accept it and move on with the information that is available.

But sometimes, when you’re lucky, you get exactly the explanation you need.

bent infusion set cannula blocking insulin from being delivered

2015 Diabetes Blog Week Day 3- Clean it out

Diabetes Blog Week

As many times as I’ve tried to empty my closet, there is one thing that just keeps lingering. It’s like that piece of clothing that you really should get rid of, but something makes you hang on to it, even if it doesn’t fit or you don’t particularly like it anymore.

For me, I need to clean out this one stubborn bad habit I have- bolusing after I eat instead of before. This is not a new issue for me, in fact I’ve written about it twice before. The first time I talked about how it really comes down to control, and how giving insulin before I eat feels like giving up control of what and how much I eat. The second time I wrote about it was in reference to having a cue to remind a behavior…but obviously the cue didn’t stick and the new habit never developed.

It’s a habit that I know if I could develop would help a lot with my post meal spikes. So why is it stubbornly sitting in my diabetes closet?

It’s probably a combination of reasons:

  • I’m forgetful, plain and simple. I don’t think about bolusing often until halfway through my meal or after
  • I don’t want to give the insulin and end up not eating everything I gave insulin for and then either drop low or end up eating more food than I want
  • It’s something to blame for why my A1c has been pretty much hovering at the same place for the past year and not going down. It’s an excuse I tell myself, a way out for why there hasn’t been much positive change lately. “Well once I start doing that regularly my numbers will look better.”
  • Habits are hard to break and I haven’t given it the effort and investment it needs

Maybe this is the spring cleaning, the kick in the butt that I need to finally clear out this bad habit…for good. I definitely don’t need it cluttering up my closet anymore.

This post is part of the 2015 Diabetes Blog Week. Today’s topic: Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?