Caregiver Burnout?

Listen up guys… I am not naïve to mental illness and how it takes hold of all kinds of people.  I have a Master’s Degree in Clinical Psychology, so I know what anxiety and depression are supposed to look like.  In a previous post I told you how I had realized that I needed extra help but I wasn’t sure where it needed to come from.  I had tried medication but it made my migraines come back so I tried just focusing on my marriage, my family, and slowing down.  Fast forward to about two months ago maybe a little longer and I realized I had slipped into a depression and I wasn’t sure how I got there. 

Again, I have a highly stressful job, that I enjoy very much, but again very stressful.  Imagine coming to work every day and it being your responsibility to make sure 20-25 of your closest family members or best friends make it home alive and safe?  Well that is what I do on a daily basis not to mention some of the calls that we take on a daily basis that haunt our nightmares.  However, it is something that I love and I feel like I have a purpose, not to mention I am very good at it.   When you take that level of stress mixed with the daily care of a Type 1 Diabetic and trying to keep your marriage afloat a person just gets overwhelmed with their emotions and life in general. 

There had been more events leading up to this than just my job and Abbi’s T1D, a lot more but those issues are not something I am willing to share and really do not add to the story.  Just know that I knew I need some help and all the date nights in the world were not going to do it.  So, I went back to the doctor and she teamed up with my neurologist to find a non-SSRI medication that would not cause my migraines to return.  After doing some research the original medication I was taking was an extended release and the number one side effect was headaches.  They had a standard release form of the same medication so we decided to try that.  So far, this medication has worked beautifully, minimal side effects and no migraines. 

I knew medication was not the only answer, that I needed to work on me too.  I needed to start seeing a counselor, however, the one that was recommended to me was booked until this month.  Thankfully, our insurance has a program called “health online” and they allow visits with a counselor online.  So, I have been talking with one of those once or twice a week until I can get into a face to face with the counselor I wanted to see originally. 

I know a lot of you are probably saying, “What about your husband, where is he? Why isn’t he helping you? How does this make Abbi feel?”.  Unfortunately, depression takes many forms and I kept it very well hidden behind smiles and laughs for months.  I went about my regular routines, work habits, family habits, and everything in general until I just couldn’t anymore.  Has he been supportive?  Absolutely, I don’t think he fully understands the depression but he supports what I need to do in order to work on me during this process.  I am still fully involved in Abbi’s care, in my family, in my job; I just am making sure I am taking more time to work on me as well.  I am healing a part of myself that I wasn’t aware was broken until it was too late and now it is very difficult to fix. 

Do I think taking care of the diabetes lead to me feeling the way I do? Absolutely not. I love my daughter and would do anything for her.  I would take this disease from her at any given moment without thinking twice.  I have no complaints about caring for her and teaching her how to count carbs, dose her insulin, have her supplies organized so they are easily accessible, and prepare tasty meals that are still low in carbs.  I think it was a mixture of events that transpired over the course of the year.  From losing someone close to me to suicide, to the stress of my job and working 40-60 hours there, to Abbi hitting her “teenage years” and being a Dia-Mom 24/7. And even though I knew I had all the support anyone could ask for from my husband, my family, my work family, and my friends, I never asked for it.  I was too stubborn for that.  I could fix it by myself when in reality I couldn’t.  I am doing somewhat better now.  I still have a long way to go but the fog is gone and I finally have a clear picture.  I am still not 100% sure what part of me broke and what caused it or if it can be fixed fully, but I am trying every day.  Abbi is still my primary concern, but so am I.  Because it’s kind of like when you fly on an airplane and the flight attendant is giving you instructions for the oxygen mask.  They tell you to place your mask first before helping anyone else.  This is because if you pass out from lack of oxygen you can’t help anyone else.  Same theory, if I forget about myself and just focus on Abbi or T1D or anything else, I will forget to breathe and then I won’t be able to help anyone.

Taking care of you….

For the past two plus years I noticed that our lives revolved around our family, around T1D, and trying to balance work, school (I mean hey we have two parents in college too), just everything in between.  Around 6 months ago or so, actually right when I started this blog, I started becoming very overwhelmed.  Now many of you know what I do for a living, but I deal with a huge amount of stress in my job and other people’s every day dilemma’s.  I attempt not to bring that home with me but sometimes it spills over.  I remember looking at Andy one day and saying, “I think I need to go see something, I feel like I am reaching my snapping point”.  I think he understood but was slightly confused because I always put on such a strong face and try to make it seem like everything is okay all the time.  Well, that is what Mom’s do right? 

So, I held everything down for another month or so until it didn’t get any better.  It felt like I was trapped, like I wanted to scream all the time.  So, I made an appointment with my PCP.  I didn’t care at the point what people thought, at that point what anyone thought didn’t matter because I knew I needed help from someone.  When I approached my doctor with everything that was going on, she was very attentive and listened.  It was the most relief I had felt in months.  Not saying Andy hadn’t tried, because God knows he had tried, but talking to your husband about these things just isn’t the same as unloading everything onto a stranger.  After about an hour appointment and some tears, she decided an anti-anxiety medication might be beneficial since I seem to have a lot on my plate.  We started out on Wellbutrin on a very low dose.  She went over all of the side effects and told me to come back in 30 days or sooner if I didn’t feel any relief. 

Fast forward to about 3 months later, two dosage adjustments later and I was doing wonderful.  It completely helped with the overwhelming feeling.  There was only one problem.  It caused major headaches.  I had spent the last 4 years without a migraine or a headache which I had suffered from all of my life so to take this pill and have them come back, was it worth it? Life had started to calm down a little.  We had figured out how to handle some things with Abbie a little better, I had stopped school for a little while, work was slowing down (well as much as 911 could) … so I decided let’s wean myself off this and see what happens. 

I had also decided a couple other things about our life.  We needed to focus on us a little more too.  We had stopped that part, everything was about the girls.  And I mean everything.  From the time we woke up in the morning until the time we went to sleep.  Whether it had to do with diabetes, school, dinner, housework, what to do on the weekends or anything in between. We had stopped dating each other.   So, I decided at that moment I had every other weekend off and at least one of those weekend nights we would have a date night of some kind.  Whether we went out together or with friends it would be kid free.  I also decided I had left my friends behind.  I stopped seeing them, stopped hanging out with them and in short, I had lost myself.  So, I wanted to make time for them as well. 

Please don’t get me wrong, I know this doesn’t work for everyone especially those with newly diagnosed or those with very young children.  But Abbie is almost 12 and has been diagnosed almost 3 years.  We have four phones in the house and neighbors that are amazing.   Has it worked?  I think it has, it has helped my sanity at least.  It has helped show my daughter that we trust her a little more and gave her some self-confidence and she is doing wonderfully with her care.   We talk a little less each day about her T1D and more about us as a family.  Are we perfect?  Good lord no, not by any means, but we try and I think that is what matters and we try which is all that most of us can ask for.

So, the moral of this post is to always remember to take care of you.  If you are failing you, then how do you expect to take care of anyone else. 

XOXO

MRI Update….

So I just had my MRI yesterday on my hand. I am hoping they will have a definitive diagnosis in the next couple days. Right now I am wearing a brace that keeps my thumb at a straight angle from my hand (imagine a thumbs up position). It makes it difficult to type for a length of time and after working 12-hour shifts as a 911 Dispatcher, it is already sore enough. So hopefully we will have a plan of action soon! Thank you for your continued patience.

…there’s another kid, remember?

As most of you know Abbie is our oldest daughter.  She is 11 and her younger sister, Jamee, is 9.  When Abbie was first diagnosed this disease CONSUMED us.  I will fully admit I didn’t know how to deal with everything it took away from the family, how to give Abbie the attention she needed, how to maintain myself, how to maintain my marriage, how to maintain my job, and how to maintain my other child.  That was the big one….  I think the toughest challenge is the other siblings.  

When Abbie first came home we sat down as a family and tried to explain that until we got everything under control… (because that was going to happen right?) …  Abbie was going to require more attention and if Jamee ever noticed it or it bothered her we really needed her to step up and just tell us.   But I mean she was 7, what 7-year-old would look at Mom and Dad and tell them she felt left out.   Jamee was and still is the most loving and gentle child I have ever met.  She wants nothing more than to make everyone else happy, so for her to look at someone and tell them that they need to focus more on her would just not work in her favor.  So, for the first month or so everything seemed to go very smoothly.  Jamee even seemed to want to be overly involved. She would help get Abbie’s lunches and snacks ready.  She wanted to learn everything there was about T1D.   We thought it was very sweet and it fit very well with her nature. 

Then about a month later, she became very distant and started picking arguments with her sister.  She would talk back to us and would try anything to be defiant. She no longer wanted to help when it came to anything T1D related at all.  I remember looking at Andy and telling him this was an attention thing but I didn’t feel like we were showing Abbie more attention or I didn’t see a way to show her any less. I mean she had to have the amount she was getting right?  So, what could we do?  I mean it was a rock and a hard place.  Abbie was not self-sufficient enough to take care of the major or even the minor stuff without help and we couldn’t divert all of our attention away to placate Jamee.  And placate might be an awful term but at that time that is how it felt. 

I remember sitting Jamee down, just her and I, and asking her what was going on.  She denying anything of course and me having to pull it out of her.  She broke down into tears and asked if we still loved her as much as we loved Abbie.  (insert broken heart here) That’s when I figured out that since Abbie had come home, T1D had consumed us.  It had taken over everything, our walls, our fridge, our eating habits, our conversation, our family outings, even how we treated each other…everything.  And it was going to end that day.  Don’t get me wrong, T1D will always be there and it is something we have to talk about but we just try to take a lighter approach to it now. 

It’s the small things, instead of asking Abbie first thing when she gets in the car after school, “how was your blood sugar today?”, I ask her “how was school today”, or I speak to Jamee first.  We have put T1D on the backburner if you were looking in but still have tight control only because we have learned how to have a conversation without having the conversation.  We make sure to do lots of things NON T1D related and since that day we all made a pact with each other that if the attention turned back that way again we would speak up.  Has it happened?  Absolutely…. When Abbie went on the pump and the Dexcom our world was changed again.  The focus went back 100% on T1D, Jamee stepped up and put a halt to it.  So, we all worked together to make sure we maintained the family focus that we needed to have.  Does it get out of whack…yep all the time.  We are not perfect, no one is, and if they tell you they are they lie or it’s what they need you to believe.  However, we work on it daily and as long as my kids can grow up saying they know we all tried as a family… well that is all that matters to me. 

XOXO P.S.  My thumb is slowly healing hopefully, MRI is next week or so and we will find out if I have to have surgery or not… fingers crossed not…

There may be a delay…

Just wanted everyone to know that I was in the middle of updating the blog over the weekend when I had a little accident. I have broken my thumb in two places and it is taking every effort just to write this properly. So there may be a slight delay in between posts. Hopefully I will be up and running soon! Thanks for understanding!

It’s just too much…

This post will be shorter than most. I just wanted to explain why I have been MIA lately. Sometimes I look at our life and think we have everything under control. Abbie’s blood sugar is for the most part in a great range, her pre-teen hormone levels are as controlled as they can be (lol), Andy and I just finished our bathroom remodel today, and Jamee is blossoming into an extremely smart and beautiful young woman before our eyes. Yep, life is completely and utterly under control right?

Wrong?! So just like in the bathroom remodel.. when the measurements were correct, but the plumbing didn’t line up; or all of the finishes were up but then the water supply line busted on the last day, life decided in our Type 1 journey it would throw us another autoimmune curve ball and see how we would play.

We noticed over the past several months that Abbie had become extremely moody, had a lot of anxiety, she was losing hair, and it seemed she was not growing properly. I knew it all seemed like a Thryoid Disorder but I thought she was tested for those antibodies when she was diagnosed and thought she had been tested for those levels as her previous endo appointment with the old endo. So last month it was time for her recheck at the new endo and I brought up my concerns. She had a blood draw done.. guess what it showed? Higher than usual TSH levels. Ding, Ding, Ding, Momma wins again. Not that I wanted that prize, but I should always go with my gut. So endo wanted us to have her rechecked in a month, but this time we would do a slew of tests including the antibodies tests since those were never done either… ugh!

So, over the past month we have been going on family camping trips, going to cabin, going to Busch Gardens, remodeling the bathroom… did mention it’s finally finished (I’m a little excited).. and we just went in two days ago for the redraw. Now we wait…..If the numbers are still high, we start her on a synthetic hormone to regulate her Thyroid levels and of course that will take a while it just means her body attacked one more thing in her body.

Sorry for the vent post… it’s just all very frustrating to be honest. These kids should just get to be kids instead of worrying about taking pills and what they eat and how they eat and what time they eat. Instead, they get to put their big girl panties on about 10 years too early and try not to worry about what might fail next.

Okay… enough venting for tonight….

The Last Straw….

When we left off I was very excited because of a Endo appointment Abbie and I had with a NP.  She had gotten us all hyped about Abbie becoming independent the coming school year if not sooner, and that we were doing a fantastic job.  We got home and felt fantastic and Abbie told her Dad all about the appointment.  It was the happiest I had seen her in a while. 

What people have to understand is what this disease does to our kids, it changes them not just physically but emotionally and mentally.  Over the course of the past year, I saw my daughter slip into a depressive state that Andy and I did not really know how to approach, and I am currently in school for Clinical Mental Health Counseling.  You take this normal, happy-go-lucky kid and tell them that everything is going to look the same on the outside but on the inside they have to battle something to keep themselves alive…every day.  While doing that they have to explain it to their friends, deal with bullies, deal with school, leave classes 4-5 times or more a day to go to the nurse, wear funny looking devices on their body, be singled out because they can have cell phones out in the classroom or drink juice in the middle of class.  But on the outside they look just fine, so to all the other kids they don’t understand and kick them while they are down, so to speak.

At the beginning of Abbie’s depression, I attempted to get her into see a counselor, but she did not respond well.  At this point we were doing most things for her, counting her carbs, making all of her treatment decisions, probably harping on her a little too much.  So I decided to step back and give her some responsibility because she sat down and told me that is what bothered her the most, she just wanted to feel like this was hers.  So I started letting her help me count her carbs, do her infusion changes (with me present and helping), changing her Dexcom, and everything in between.  Her mood and overall personality did a 180 over the course of a couple weeks.  She was smiling again and then that doctor’s appointment was the icing on the cake, because school was the last place that she felt singled out, like an outsider. 

So about a week after that appointment, my husband and I went on a cruise and the girls stayed with my mom for spring break.  Everything was great.  Abbie would text me with how she thought she should treat a number or a meal, and I would adjust if necessary but most of the time she was close or correct.  When we got back, the school handed out the schedule for SOL testing that would be happening at the end of the month in May and Abbie went pale.  These tests have played havoc on Abbie since she was diagnosed.  Last year, her blood sugar went up to the 350’s and there was nothing I could do about it. 

So, I got with the school and asked them how this was going to work with her Dexcom and treatment.  I was told she could not have her phone, that the proxy could have her phone but that any treatments had to go through the nurse.  So basically, if Abbie went high, she would be pulled out of the test by the nurse, treated and brought back.  I couldn’t be mad at the school, this is what was on her DMMP and they were just following that.  At this point I figured I would make a plea to her CDE and her Endo to change her DMMP at least temporarily to get her through her SOL testing. 

I called her CDE and made my case telling her that Abbie has shown tremendous responsibility over the past few months, that it was ridiculous that she had to miss so much class time and have to stop these tests when all I had to do was send a simple text message and the message get delivered to her.  Her CDE agreed and said she would state my case to the Endo and have him call me back.  So I waited.  And I waited.  And I waited.  By 3pm that afternoon, Andy got a little heated and called the doctor’s office to leave a not so nice message.   I would say 45 minutes after that phone call, my phone rang but it was Abbie’s CDE.  She said she put in the information to her doctor for Abbie to be independent, at least for the month of May until we were able to see him again in July and he denied it stating it was not in his policy to allow children to be independent at school until high school age.  She said she put in a message for him to call me as soon as possible.  I was livid.  I was not so sure a phone call was going to be the best idea, but I was up for it.

The next morning while I was training a class, my phone rang, it was the doctor’s office.  I kindly excused myself and stepped out into the hallway.  He started off the conversation nice enough, as he was always pleasant to speak to, very kind.  He seemed genuinely concerned as to the trouble I was dealing with and seemed to listen to my plea. When I stopped talking though is when it all changed.  He started off by letting me know that higher blood sugars for a 30 minute test was not going to hurt her.  I shot back letting him know that SOLs are not a 30 minute test, they can last up to 4 hours and these are not just higher blood sugars, she goes up to 350 or more.  He went on to tell me that that wouldn’t hurt her for 4 hours or we could give her a temp basal to battle it before and after.  I told him that made no sense considering I did not know how much she would actually rise.   It was at that point that he went off on a tangent about that no matter what I said that my child would not be independent, no now, not in middle school, and possibly not by high school. 

Umm what?

He went on to tell me that children that have too much responsibility tend to resent diabetes.  Well excuse me…. Of course she resents diabetes, it freaking diabetes, at least this is giving her control of it.  I explained to him her depression and how we dealt with it and how giving her the responsibility gave me my child back, except for at school, school was the one place she still felt different.   He told me it might have worked for now but eventually she will resent it again, she will resent me too for putting it all on her.  Well I don’t put it all on her, first of all.. you’re not listening! He then went on this long run about a self-help book he talks about at the Diabetes Camp and how I needed to be a better parent to my daughter by taking back control of her T1D before it got out of hand or I would lose her. I am pretty sure I was tasting blood considering he was now critiquing my parenting style.  The final nail in the coffin was when he told me that his decision was final, and it was his policy on independence and that he would make sure no other doctor in his practice gave my daughter this either.

I was done.  I hung up with him, called the front desk and cancelled her upcoming appointment.  I researched surrounding doctors and learned that I currently drove an hour and half one direction to his office, if I went the other direction an hour and a half, I had the Virginia Commonwealth University Children’s Hospital which was full of potential Endos.  I began drafting an email to potential new endocrinologists and have never looked back.  Two days later the Patient Director reached out to me over a phone call that last almost an hour and we discussed what I was looking for.  I never talked bad her current Endo because I believe we just had a difference in treatment outcomes for my daughter and that he looked at her like he looked at every other child.  I only told them that him and I had reached a fork in the road that we could not agree on and I was looking for a more progressive approach to her care.  She set me up with a new Endo and we have had one appointment.  So far, Abbie loves her and I like her a lot.  She listened and understood and she took the time to talk to me and to talk to my daughter like she was a human being. 

Moral of the story:  When it comes to your child… stand your ground.  You know what your child needs, what makes them happy and what makes them healthy.  You deal with this disease with your child 24/7 so do not let someone who only sees your child every 3 months dictate how they live their life. 

T1D Crash Course

So I really did not plan on writing this tonight. But as I was going through one of my facebook groups, one of the Moms reached out and asked if anyone had ever done a “How to Binder” that gave instructions for the Dexcom, Infusion, Foods, Highs and Lows, etc. And as a matter of fact I have. When my husband and I decided we needed some much needed R&R this past April and went on a cruise for 7 days, I got busy and made a “T1D Crash Course” for my Mom and Dad who would be caring for Abbie.

It included what we do when she is high, what we do when she is low and how we want them to just have fun and not worry as much as we do. I made sure to tell them that I understood they would not draw the parameters as tight I did and that was ok, but I wanted to give them the tools to handle most anything. I included instructions on the Dexcom G5, the Tslim X2 pump and infusion change, different foods, what to do in extreme emergencies including using Glucagon, and even visual aids 🙂 .

Attached is the PDF version which is not able to be edited but you can look at it and figure it out your own. I have also included the Word version which you can edit and make your own. I figure if it is at least helpful to one person then it is worth sharing. I went and got a binder with dividers so my Mom could just find whatever she needed.

Instant Pot Greek Yogurt

Can I just say I love my Instant Pot! I had it before Abbie’s diagnosis and I had been making home made Greek yogurt for about 6 months prior. However, I did not learn how much lower in carbs and how much higher in protein than regular store bought it was until I did some research. Your average store bought Greek yogurt has about 13g-18g of protein and 20-25g of carbs per 4.5oz cup. Now you can definitely get them lower, but then you are going with alternative sugar options and lots of preservatives.

This Instant Pot Greek Yogurt takes literally 3 ingredients, has 22g of protein and 10g of carbs per 5oz cup. No preservatives, no sugar substitute, and it still has the active cultures. There are a couple of things I have that make this process easier: an extra Instant Pot Inner pot and Metal strainer to fit in it; EuroCuisine Greek Yogurt Strainer, small plastic 5oz cups with lids to store the yogurt. I use both the metal strain and the EuroCuisine Strainer as this will make almost 6 quarts of yogurt which will not fit in one alone.

KEY NOTE: You have to have the Instant Pot Duo with the yogurt function!

Ingredients: (This is if you have the two strainers, if you only have 1, cut the ingredients in half)

  • 2 – Ultra Pasteurized Half Gallon Milk (1%, 2%, or Whole milk; I use whole milk and I use Fair Life Brand, it has to be ULTRA PASTEURIZED)
  • 2 – 16oz Natural Bliss Vanilla Creamer (it has to be this creamer because of the ingredients, they are very simple, anything else will cause the yogurt to fail)
  • 1 – 5.3oz Chobani Plain Greek Yogurt (You really only have to buy this once and can freeze and use your own next time around)

Directions: (Note: your Instant Pot will be out of commission for at least a day; plan accordingly)

  1. Pour the milk into the Instant Pot.
  2. Take 2-4tbsp of the Chobani Greek Yogurt and put into milk. Whisk for approximately 30-45seconds.
  3. Pour in both Natural Bliss Creamers, which for about 15 seconds.
  4. Place a regular lid on the pot; if you do not have a regular lid that fits, you can put your pressure lid on there just make sure it is open to venting. We are NOT PRESSURE COOKING.
  5. Push the Yogurt Function on the Instant Pot. It should automatically default to “Normal” and 8hours. If it doesn’t press the plus or minus to adjust the time, and press the yogurt button until it says “Normal”.
  6. You will hear a beep and the time will read 00:00. This is the only time your instant pot counts up instead of down. Now you leave it for 8 hours. (Note: I usually try to do this around 1-2pm so it finishes right before bed)
  7. Once it finishes, take the entire pot with the lid and put it in the refrigerator for up to 8 hours but no less than 4 hours.
  8. After it refrigerates, get your extra pot out, place the metal strainer in it along with 4 coffee filters laid flat inside the strainer. Also get out the extra EuroCuisine Strainer.
  9. Use a spatula and pour the contents into the strainers. Cover them with lids or aluminum foil and put back in the refrigerator for at least 4 hours. The longer you leave them the thicker the yogurt will be. This is straining the whey out which is what makes Greek Yogurt.
  10. Once they are strained, pour the contents back into one pot and use a whisk or hand mixer to whisk smooth, as it will be lumpy right now. Then spoon into containers. It will be good for 2 weeks.