Where I disappeared to and what I’m working on

I kind of disappeared didn’t I? Life has been good here in Snow land. My husband usually works rotating shift work but for the last month he’s been on a job assignment where he is working typically five eight hour days. It’s been like a dream really as I’ve gotten to live the schedule I’ve dreamed about having. I’ve pretty much totally disconnected from technology and have been soaking up this precious time that’s going to end soon when his schedule changes again. It’s been amazing to experience family dinners every night and dad helping put the kids to bed and Saturday fun days and church together on Sunday. Going to bed together and waking up at the same time makes me really happy! Anyways, I’m not complaining about his job, just really, really enjoying this reprieve. And he is too!

Life has been super full, in a good way! I am full on homeschooling E for PreK using the Mother Goose Time curriculum. We’ve joined our towns homeschool co-op and have really been enjoying the support and opportunities that that offers us. I snuck this photo of E with my iPhone while she was getting her photo done for the co-op year book. Isn’t she adorable!?

We’ve added into our routine 2 new programs that the library has started, a toddler story time geared to kids T.J’s age and a 1,000 books before kindergarten program. (Not as hard as it sounds.) Yesterday we stopped by our homeschool co-ops library and took a look around and checked out a couple preschool phonic videos.

Right now the weather is starting to cool down and I’m loving it! It’s still getting up to 90 or so in the middle of the day but in the morning and evening ti feels delicious out! It’s getting close to fall! I’ve been bringing the kids to a different park probably 3-5 times a week either in the morning or evening to try and soak up every moment of my favorite time of year. The cool air makes me happy!

Friday we are planning on going to the local fair with our homeschool co-op. It will really feel like fall has begun then!

The reason I got on here today is because I’ve been thinking about my different New Years resolutions I made for this year and posted on this blog. One of my goals was to get my A1C (a measurement of blood glucose average), down to 5.5. My first A1C of the year was 5.6, then 5.8 and now I’m guessing it’s significantly higher. I really need to get a grip on my blood sugar and get healthy gain. Mu numbers have been running way too high and I feel it. I’m still doing the low carb/ ketogenic diet but I haven’t been counting my carbohydrates or protein and I have not been eating similar meals at the same time which all are things that contribute to balanced blood sugar. I’ve mostly been making myself a meal, looking at it and guessing how much carbs and protein is it in and then estimating how much insulin to take. Not a great way to go about it. I’ve been busy though and what mom has time to stand in the kitchen measuring and weighing every piece of her food!? I know some people do a great job at it but the reality is I don’t want to make time for that. I don’t want to cut back on anything else in my life to take time for that but my health is suffering for it.

I have a plan though and that’s what I wanted to share with you! I made a meal plan of 3 different meals and went to Kroger and stocked up on ingredients. I came home and spent an exhausting afternoon cooking myself about a month’s worth of meals and carefully measuring everything out and writing down how much insulin to take for each meal. That way all I will have to do is get it out and take the pre determined amount of insulin for it. I’m hoping this is going to help me.

 

I have 3 1/2 more months to get my A1C down to 5.5 and meet my goal for the year. 30 days from now- October 13th, I’m going to buy myself a home a1c test from Wal-Mart and see if after putting in 30 days of hard and consistent work if I can get that 5.5. Stay tuned and cheer me on!

Last night I ate my bowl of soup, salad and low carb biscuit. Overnight my blood sugar rose to 250 by morning. (That’s almost 170 points higher than my goal blood sugar.) With that information instead of taking 5 units of insulin for dinner I will take 6 units of insulin for dinner and since I did a lot of that rising (according to my continuous glucose monitor) towards morning, I’ll raise my long lasting insulin by 2 units. That’s how insulin adjustments go. It’s not an exact science, just trial and error but consistent meals will take out some of the variables.

I do realize that things will come up that will cause me to have to guess at meals. T mentioned going on a date and going out to eat before he goes back on his other schedule. I can’t turn that down! 🙂 I’ll get a salad and do my best to dose insulin but it is what it is. (Unless we have a picnic date.. that’s a possibility!) Also, I haven’t decided yet about lunch for Sunday when our church shares a potluck meal. I may just enjoy whatever low carb option I bring or someone else brings without worrying about perfect blood sugar that afternoon. Although, I have noticed that Sunday’s can particularly exhausting not only because it’s a long day but different foods do cause some roller coaster blood sugars. I may have to decide that one come Sunday. One different meal a week especially if I keep it low carb won’t ruin my average blood sugar overall.

Put your goals (big or small!) that you’re working towards in the comments and we’ll encourage each other and keep each other accountable!

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Reviewing my personal 2017 goals

I think March might be the month that New Year resolutions start to be forgotten. I’m not basing that off of anything that’s just my guess.

My new year resolutions/ things I wanted to work on this year were:

For my health- bring my A1C down from 5.9 to 5.5
pass out gospel tracts
memorize scripture
read the Bible through chronologically
1. I had my first A1C (a measure of average blood sugar over a 3 month time) of 2017 done this year and it was 5.6. My hard work is paying off and I hope to see that 5.5 three months from now.
2. I ordered some of Ray Comfort’s ‘Why Christianity?’ tracts/ booklets and God has been helping me to pass them out. I need to still be really diligent about this and not let it stop as the year progresses. Every single tract is difficult for me to pass out and I have to ask God for help with every single one. It still makes me nervous to ask someone, “can I give you one of these?”
3. My specific goal that I set is to memorize the first 3 1/2 chapters of Colossians. I’m on Chapter 2 verse 10. Progress has been slow but I am making progress. I need to start calling my friend again who we had decided to keep each other accountable and recite the scriptures we are working on to each other once during the week. We are both very busy moms and it has proven more difficult than we thought to find the time and a time that works for both of us.
4. This is a goal I started a little later in the year, towards the end of January so I may not actually finish until the beginning of 2018. I read the beginning of Genesis, then Job, then completed Genesis and Exodus and now I am in Leviticus. I’ve worked hard and was able to keep this up even while on vacation.

What goals did you set at the beginning of the year and are you meeting them?

Observing God’s hand through 11 years with type 1 diabetes

The cover photo is about a month of shots.

Before I begin, I want to start with a disclaimer. When talking about diabetes I usually am very positive. I talk about how thankful I am for the discovery of insulin and for the health I enjoy. I don’t won’t to scare my family and friends. The gravity of this disease for the most part is something I shoulder alone. In this piece though, I am going to be brutally honest about how dangerous type 1 diabetes can be and honest about the sobering fact that in spite of the utmost diligent this disease does claim lives every day. I’m also going to be honest about how much effort it takes to stay alive and healthy every day. I strive to be somewhat discreet about diabetes management because it is not what I want to be defined by but at the same time I want to be real here.

I also want to acknowledge that I know type 1 diabetes is not as bad as it gets in a world of suffering. I realize that there are so many  people suffering so much more than I who if they could would change their diagnoses to the life that I live. I don’t want this to sound like I feel like I’m the poster girl for sickness and or come across as, “woe is me!” This is my story and what God is working in me. I pray it is edifying to you.

“We were promised sufferings. They were part of the program. We were told, ‘Blessed are they that mourn,’ and I accept it. I’ve got nothing that I hadn’t bargained for. Of course it is different when the thing happens to oneself, not to others, and in reality, not in imagination” C.S. Lewis, A Grief Observed

This month marks 11 years since I was diagnosed with type 1 diabetes. I want to write a testimony of how I see God working in and through my disease but it has been harder to write this than I thought it would be. For one, the big answer to my question is, “I don’t know.” God is so much bigger, infinitely wiser and His perspective so much broader than my own limited knowledge that I can not act like I know what God is doing through my disease. It’s also difficult for me to separate one area of suffering from the other sufferings in my life and try to pick apart what this one thing is doing for my sanctification when we know that God works all things together for our good. My disease does not stand alone in my life but is interwoven with the the other blessings and sufferings I have experienced to work something that only God can see. Also, I realize that I can only see who I am with this disease. I do not know who I would be with out it. My spirit is undoubtably changed in ways that I don’t know and can’t know for having this disease that I’ll only know about if God chooses to reveal it to me in eternity.

I have been given the scripture though that gives me insight and the Holy Spirit Who has been with me every step of this journey. So, in spite of my not knowing everything, there are a few things that God has taught me over the last decade plus of living without the function of a vital organ that I will in humility, knowing I don’t have all the answers attempt to share with you. These are some of the things I have wrestled long and hard with.

I have learned that my flesh does not desire calvary. My lips sing, “lead me to calvary” and “Jesus keep me near the cross” but my flesh which craves comfort does not want to go. My disease like the thousands of needles I’ve put into my flesh, pokes and prods me towards the cross and makes me to say, “Where else can I go?”

“For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, for Christ’s sake: for when I am weak, then I am strong.” 2 Corinthians 12:8-10

“ ‘Knock and it shall be opened.’ But does knocking mean hammering and kicking the door like a maniac?” C.S. Lewis A Grief Observed

3,650 times and more I besought the Lord for healing. I’m basing that number off of the first ten years I lived with type 1 diabetes when I prayed for healing every day. God has answered me. He has answered no, not in this life. Some are uncomfortable with me saying that. The modern church wants a God who dispenses comfort over holiness and health over sanctification. A name it claim it gospel where God will give me whatever I demand. Joni Eareckson Tada says something that I have grabbed on to in my spirit through out suffering in my life, “God permits what He hates to accomplish what He loves.” As you know that’s an enormous subject that I’ll let people smarter than me grapple through but it’s something that I have wrestled with intensely through prayer and studying the scripture.

Through type 1 diabetes God has given me a spirit of contentment. By the power of Jesus I am content when God has said, ‘no.’

What does it mean to have God’s grace be sufficient to me? This disease is like a prison made of cement infused with iron bars. I can slam my head against the wall of this prison until I’m knocked silly but I’m not getting out. God’s grace is when I walk in the freedom of Christ in spite of this prison and reckon my entire body dead (not just my pancreas!) with Christ but alive unto God. God’s grace is that He is with me in this body, literally indwelling me. God’s grace is the eternal mind set He gives me and the hunger I have for the world made new. I want it so bad it physically hurts- to hear the trumpet sound and see my Lord return to make everything new and right.

‘God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God’ Steven Curtis Chapman God is God

This disease strips me of pride, self sufficiency and replaces it with humility, as in humiliation. I can not stay alive except for a life support called insulin. I could die if I left the house without candy. How stupid does that feel? To live in the shadow of death walking the tight rope of, not too much insulin, not too little insulin. To log into Facebook and see another ‘diabetes friend’  has died or suffered severe brain damage makes me view my life for the vapor that it is.

At night especially I wrestle with this, my own mortality. I prick my finger several times to try and see which direction my blood sugar is headed and then toss and turn until my spirit surrenders my life into God’s hand knowing that, “it is only the Lord who makes me to dwell in safety” and while I do what I can to stay healthy ultimately my life is in His hand and my last breath as well.

“I once read the sentence ‘I lay awake all night with a toothache, thinking about the toothache an about lying awake.’ That’s true to life. Part of every misery is, so to speak, the misery’s shadow or reflection: the fact that you don’t merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief.” C.S. Lewis A Grief Observed

Titus 2:12 “Teaching us that, denying ungodliness and wordily lusts, we should live soberly, righteously, and godly, in this present world;”

I never really was a “teenager” if you know what I mean. At 13 I became scary sick and was faced with my own mortality and the fragileness of my own life in ways that people usually don’t consider on a daily basis until they are much older. I think having this disease at a young age came with a big spoonful of sobriety shoved down my throat whether I wanted it at the time or not. I had to and have to think about death daily because this complicated disease requires so much work to stay alive.

Psalm 56:3 “What time I am afraid, I will trust in thee.”

If I had nothing to fear in this life, how would I learn to trust God when I am afraid?

Colossians 6:20 “For ye are bought with a price: therefore glorify God in your body, and in your spirit, which are God’s.”

I know whether a persons body is sick or healthy it is to be used for the glory of God. “And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.” 2 Cor. 12:19

So I give thanks to God for my weakness for without it I would not know His power upon me in the same way. I also surrender my body to Jesus to be used for the glory of God because this body is His- not mine. The key to being content in sickness is realizing that this body does not belong to me. Christ paid for it. It belongs to Him and He can use it as He sees fit. I may prefer He use it in a more comfortable way, I would choose to have health and comfort but the God who loves me, gave Himself for me and is infinitely wiser than me has given me the honor and the privilege of glorifying His name through what appears to men (including myself) as weakness and foolishness.

“But God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things that are might;” 1 Cor. 1:27

Philipians 4:13- “I can do all things through Christ which strengtheneth me.”

I want to stop here and say something really obvious- I’m not super Christian. As I am writing this I experienced a really hard diabetes day. While on vacation at the Lodge in Kansas City I was low for about 2 hours. I carefully took just a few bites of food about every 15 minutes trying to avoid going too high from treating the low. I was doing an activity with my kids, my blood sugar stuck in the 60’s, trying to give my kids a good time while feeling shaky, sweaty and faint. Finally by bedtime I had come up to the 80’s and could safely go to sleep. Around 2 a.m I hear, “mama, I need a blankie..” I open my eyes and was hit with a wave of nauseous and the feeling that my bones hurt. (the only way I know to describe the feeling.) I knew I was high. I tucked in my little one and then gathered my blood sugar meter, a syringe and a bottle of insulin and went into the hotel bathroom area so as not to wake up my family. My blood sugar was 296. I drew up insulin in a not so sanitary area and then added another bruise to all the other bruises on my thighs with the needle. There are other things I’d rather be doing at 2 a.m. I then had to go to bed hoping I had chosen the right amount of insulin and that I wouldn’t bottom out by morning.

I didn’t sleep well the rest of the night, my heart racing from the high blood sugar. It took most that next day to come down. I was dehydrated and my muscles hurt. By late that next afternoon when we stopped for lunch at McDonald’s my blood sugar was starting to drop low. I thought I could get a salad with grilled chicken but the ranch dressing had 13 grams of carbohydrate in the form of corn syrup. I thought instead of the corn syrup I would get a piece of grilled chicken on a bun for the same amount of carbs. Bread doesn’t usually work for me but I thought I could get away with it since I was low, had active insulin in my blood stream and was going to take more. I injected twice the amount of insulin I usually take for lunch. By the time we got home my blood sugar was back up to 300. Another injection and pushing throughout the nausea and exhaustion to get the kids settled and everything unpacked.

For dinner we thawed out some hamburger vegetable soup. I stirred around the hamburger in the bowl trying to guess how many ounces it was floating around and how much protein I would have to bolus for and tried to count the vegetables.. would I want a tablespoon of peanut butter for dessert or would I want two table spoons? I have to know 30 minutes in advance how much I will want to eat… How long is this correction bolus going to be active for? Will I go low in my sleep if I eat and stack the insulin? Do you know what I did? I went in the bathroom, sat on the edge of the tub and cried. For one, high blood sugar will turn you into a hopeless emotional basket case. For two, I was just so tired. I still get tired of this disease, I still want to give up at times. And yes, at midnight my Dexcom alarmed me that I was low and I had to get out of bed and I ate less than half a fig newton. And then a couple hours later I got an alarm that I was high…

I believe that if God has called me to walk in sickness rather than health that ‘day by day and with each passing moment’ strength I will find to meet my trials here. God is using this disease to work in my spirit a back bone of self control, long suffering and patience.

Self control. Every day all day I have to deny my flesh if I am to keep my flesh healthy. My fingers are pricked, syringes stuck all over me, I adhere to a very strict diet. No grains, no starches, no fruit, no sugar, no milk. I have to do a lot of math for each meal to figure out insulin dosages. I  usually can’t eat within 5 hours of taking a shot to avoid something called stacking insulin. When I’d rather be sleeping I have to stay awake to make sure I’m going to be okay. And the list goes on of ways I have to say no to this body every day and tell it to do things it doesn’t want to do. In denying my flesh, (for the good of my flesh) my spirit is made stronger.

long suffering– this disease isn’t going away. There is no cure on the horizon. As long as I am in this body, diabetes will be a part of my life

patience– I’m waiting. I don’t know how long I will live. When I was diagnosed I was given a life expectancy of 50 years old but I suspect because I care for myself better than average I will out live that. I’m waiting though. With the rest of creation I am awaiting a new body and for everything to be made new.

joyfulness- I bet this one looks out of place! Colossians 1:10-11 “That ye might walk worthy of the Lord unto all pleasing, being fruitful in every good work, and increasing in the knowledge of God; Strengthened with all might according to his glorious power, unto all patience and longsuffering with joyfulness;” One of the miracles that God works in the heart of those who trust Him, is the dispensation of His joy amidst trials. The evidence of His glorious power in me is patience and long-suffering that is coupled with, filled with, joy! The power of God enables me to take my mind off me and instead set it on things above. To renew my heart in Him so that I’m rejoicing in Him, and savoring the life He has given instead of wallowing in self pity or despair.

I want so much more than a new pancreas I want a new heart. A heart that is not full of sin. I want to be free not just from disease but from the root of disease- sin. I’m patiently waiting for that new heart that always loves God first and for that new pancreas that’s going to allow me to enjoy the fruits of the new earth. At the marriage feast of the Lamb you’ll want to be sitting next to me- you’ve never seen a person enjoy food like I will! The other saints will be looking at the streets of gold and I’ll be like, “Look people, I’m eating watermelon!!!”

Discernment- When I was first diagnosed with diabetes at 13 my family was attending a charismatic church. I was anointed with a lot of oil. I was told that God promises a lot of things that when I read the Bible for myself I learned were simply not in scripture.
Over the years I was told to stop taking insulin as an act of faith, or that the book of James guarantees healing for all believers so I was going to be healed if I was really a believer and many things like that.
Friends who were into alternative medicine would continually suggest I do another crazy diet or fast for 40 days or drink/ eat whatever the latest popular thing was. I wish you could hear the ways people would use my disease to try and sell me whatever pyramid scheme product they were selling.
Can you imagine how appealing anything could sound to a desperate to be cured teenager being bombarded by all this? I’m thankful that I haven’t had to walk this journey without the guide of God’s Spirit telling me what was right and I’m thankful for the Bible where I could look for myself and see what was true about God and what were people’s inventions.

John 16:32 “Behold, the hour cometh, yea, is now come, that ye shall be scattered, every man to his own, and shall leave me alone: but I am not alone, because the Father is with me.”

These words of Jesus stuck out to me for the first time after hearing Joni Eareckson Tada sing “Alone Yet Not Alone” for the movie by the same title. I wonder what the disciples response was to Jesus telling them He was going to die and they were going to forsake Him? I wonder if they even responded at all. Maybe a response is recorded in another gospel but I don’t see a response in John. Either way, there’s a point I’m getting at. Even the most sympathetic person can only walk so far with me into my suffering. There is an element to suffering that I have to walk it alone and even those closest to me can’t come with me. It’s lonely. Sometimes the biggest burden of diabetes and suffering in general is how lonely it can be. Knowing people for the most part can’t begin to comprehend the complexity of this disease and also knowing that those who do educate themselves still can’t walk this with me. Diabetes and again suffering in general is a kind of a spiritual cross roads where I leave the world behind and have to walk this alone. Except I’m not alone, for the Father is with me. He walks this lonely path with me and He reminds me He too experienced loneliness. It’s a place where I call on the friend who sticks closer than a brother for it is only Him who knows intimately what I do each day and how hard I work, and what I’m thinking. Suffering is a place of intimacy with God because ultimately only God can be there with me. It’s a sphere that crowds out all others and leaves me alone with Him Who created me for Himself.

And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don’t know

And the questions without answers
Come and paralyze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must
On this truth that my life has been formed from the dust

God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God

And the sky begins to thunder
And I’m filled with awe and wonder
‘Til the only burning question that remains
Is who am I

Can I form a single mountain
Take the stars in hand and count them
Can I even take a breath without God giving it to me
He is first and last before all that has been
Beyond all that will pass

Oh, how great are the riches of His wisdom and knowledge
How unsearchable for to Him and through Him and from Him are all things

So let us worship before the throne
Of the One who is worthy of worship alone

Steven Curtis Chapman – God Is God Lyrics

diabetes-photo

TrialNet

Once a year we bring our children to get their blood tested with  trial net.  Type 1 diabetes is unfortunately a genetic disease and while I hate getting my kids poked with needles, getting them tested once a year for the auto antibodies that cause type 1 diabetes is the best way to keep a check on their health and their blood is donated to research to help find a cure. This will be E’s second time getting tested and T.J’s first. Praise the Lord, last year E tested negative for all 5 autoantibodies. We’ll get them tested today and hear back about the results in 6 weeks or so.

If they were to test positive for any of the antibodies we then would learn about the different studies being done to see if there is any way to prevent the disease and then make a decision if we wanted to get involved.

We may visit the zoo afterwards so hopefully that will make it up to the kids for getting poked 😦

I wanted to share this because when E was a baby I asked every doctor I came in contact with about auto antibody testing and they all told me such a thing does not exist. I knew that couldn’t be true! Even doctors at the children’s hospital where trial net is located didn’t know that it existed in the hospital they were working at! They all told me essentially, “we can test blood sugar but no one tests for auto antibodies.”

I searched and asked around and spent a lot of time on line before I was told about trial net by a friend of a friend when I inquired on Facebook for help in my search.

I called the trial net testing facility in Florida who told me we had a facility right in Little Rock!

If you or one of your children have diabetes and are looking to get tested there is ether one in your area or you send blood throughout the mail using your local lab. I put a link up above.

Imaginations of Heaven

“Because when I get to heaven, the first face that shall ever gladden my sight will be that of my Savior.”
Quote by Fanny Crosby

I’ve often spent time imaging what it will be like to live in my resurrected body. I live in  a body that does not produce insulin and because of it every day I look forward to life on the new earth. It’s one of the blessings that has come out of my suffering.

When I read the above quote the other morning by blind hymn writer Fanny Crosby I started writing in my journal imagining the joy of being free from a cursed body and living in a resurrected one.

Here’s some of my imaginations..

I rejoice for the first time I will eat without counting carbs or injecting insulin or doing finger sticks (since childhood), I will be with Jesus! I’ll be laughing as juice from a fruit I’e never seen drips down my chin. Jesus laughs at my eagerness to try the sweet fruit. I meet His eyes with mine and laugh back full of joy, reaching for a napkin to wipe off the juice now dripping down my arm. As I reach for it I see again His scarred hands and my throat tightens. Unable to take another bite, I stand up out of my chair and fall to my knees in weeping worship. “Your mercy Jesus is more than I deserve! Thank You!” I say ashamed of my sin that gave Jesus those scars. How could I have offended One so good, so kind? How could He be so patient, so willing to forgive? I look up again at the radiance of His holy face and I am once again filled with joy unspeakable as I move from kneeling to dancing. I motion to my brothers and sisters to join me as the music of angels starts back up again. I never could dance on the old earth and I still can’t but no one seems to mind here. Holy! Holy! Holy! we shout echoing the angels in worship. Jesus joins in dancing and celebrating with us.

Happy and in need of a breath I sit down as the celebration around me continues. My son Titus feeds me a grape. I stroke his cheek, untold emotion rising up in me. Once again I whisper “thank You” to the Father for not sparing His Son so I can have a new life with mine for eternity. And once again, I drop to my knees. I must worship forever my King, this Heavenly Father who gives so bountifully to His children.

about the featured image: After Titus died I couldn’t bear to leave his nursery empty so T and I filled it with toys for our nieces and nephews and made it a playroom in memory of Titus. We were blessed 2 years later to use the room once again as nursery, this time for a little girl. When I went looking through my photos for an appropriate cover photo I saw this picture and thought it would be fitting for a post about longing for heaven.

 

Diabetes and God’s Power

Yesterday was diabetes awareness day. It would have been the 125th birthday of Frederick Banting, the man who discovered insulin. On my Facebook page I changed my profile picture to jdrf’s “type 1 diabetes look’s like me” slogan and I shared a few facts about diabetes. I want to take a moment here to share another side of living life with a chronic disease. As I shared before I’m reading through Randy Alcorn’s book, If God is Good Faith in the Midst of Suffering and Evil.

I wanted to share what he wrote on page’s 172-173 about his life as an insulin dependent diabetic. He first quotes 2 Corinthians 12:7-10 then goes on to say,

   “As a teenager who had just come to faith in Christ, I read this passage with perplexed interest. I believed it because it was God’s Word- but it made little sense to me. Now, forty years later, it makes a great deal of sense. As an insulin dependent diabetic I have lain helpless, stiff as a board, not in my right mind, needing my wife to get sugar in my mouth. My once-strong body grows weak. Low blood sugar clouds my judgement and leaves me with a memory of having said stupid things, like a drunken man. Several times a year I have severe reactions in which I don’t know what’s happening to me.

This humbles me, but I can honestly say I am grateful for it; yes, I even delight in it, because I recognize the value of being humbled, for “when I am weak, then I am strong.” My weakness drives me to greater dependance upon Christ. I wouldn’t begin to trade the spiritual benefit’s I’ve received.

As a young pastor I loved God sincerely; but like my tavern-owner father, I was independent, self-sufficient, and prone to do things on my own. Christ’s words, “Apart from me you can do nothing” (John 15:5), rang true- but I did a lot of things without drawing on his strength. So from eternity’s viewpoint, those things amounted to nothing.”

 

 

Road Tripping and Type 1 Diabetes (a few tips)

I’m getting ready for a road trip and as I packed I thought it might be helpful to share what I’ve learned over the last decade about diabetes care and road trips. Flying is a whole separate topic so maybe I’ll do a post on that sometime.

If you are pumping, at least a week before your trip take an inventory of your supplies and reorder if you are low. It takes at least 2 days to get supplies shipped out so allow for enough time.

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Here’s what I’m bringing. I’ve learned to figure out how much supplies I’ll need for the trip and then bring double incase something happens. This is especially true for pump supplies. If you run out of test strips or syringes you can get those from any pharmacy but if you run out of pump stuff you’re stuck. If you’re active you’re more likely to rip out an infusion set and need to have extra’s.

Always bring a few old school syringes incase your pump malfunctions. I also use them for intramuscular injections for any blood sugar over 250.

I packed an extra sensor for my dexcom that I most likely will not use but am packing just incase. My meter is in the photo but I keep that in my purse next to me in the car not in my suit case.

The homemade “granola” in the picture is so I can have a quick low carb breakfast. I’m super insulin resistant in the morning so I try to keep breakfast around 5 or 6 carbs. It’s a mix of raw nuts and seeds that I can eat with almond milk or by itself. It’s filling and has a lot of protein. Even though I would like to eat junk food on vacation I’ve learned that if I’m high I don’t feel good and that makes it harder to have fun. High blood sugar also makes me nauseous so the car sickness is worse.

Speaking of car sickness.. when I’m car sick it helps for me to eat something sweet. Snacking on oreos would be a really bad idea though so I planned ahead and made myself some almond flour and swerve sweetened cookies that are 1 carb a piece. I’ll still have to bolus for them but they are a whole lot better than gas station snacks. I also packed myself some stevia for my starbucks 🙂

IMG_6198 The day before you go (or earlier is better) refill any prescriptions such as insulin and test strips that you’ll need. Keep in mind that on vacation you’ll need to test more than usual because of sleeping in or being active or eating at different times etc.

I’m always paranoid that I’ll forgot my insulin since it’s not something I can pack the night before since it needs to be refrigerated. I usually do this: Yep, that’s a piece of paper on the front door that says, “insulin.” Put a reminder where you will see it!

IMG_6199 I bring a lunch box with an ice pack in it to keep my insulin cool on the road.

Don’t forgot sugar to treat lows!

Also if you are not pumping I would really recommend putting some sort of mark on your long lasting insulin to help you not confuse it with your short acting insulin. It’s so much easier to make mistakes when you are outside your usual routine.

Save your doctor’s number on your phone incase of an emergency or you need an unexpected prescription written.

I think every chain restaurant out there has their nutritional information on their website so if you have a smart phone you’re all set. If not, most places have that information that they can give you.

The only other thing I can think of is be prepared that you may need to set a higher temp basal if you are usually active. My blood sugar will run a lot higher sitting in the car all day than working around the house.

Make sure and drink plenty of water if you are high, dehydration doesn’t feel good!

Let me know if this was helpful and if there is anything else I can add to this list!

What I’m obsessing about (I mean learning about) at the moment

I recently heard about this 82 year old Doctor who has been living with type 1 diabetes for 70 years! Not only is he still alive he is in excellent health, even better health than most non-diabetic his age. As an engineer he experimented on himself and has come up with what he believes is the best insulin protocols, diet and exercise regimens for diabetics. He became a Doctor largely in part to get his findings published and to be able to help other diabetics.

The basis of his solution is an extremely limited, very low carb diet. No-no’s on the diet include even things like onions and tomatoes, things I generally think of as low carb. Even the allowed foods must be eaten in small quantities. I’m really fascinated though by the level of excitement coming from the people who follow his regimen. There is a FB page dedicated to people living his regime called type1grit and they post pictures of their CGM’s with steady lines and no wild roller coaster blood sugars. There appears to be quite a few children on this diet and none of them look skinny in the pictures. The one’s I have seen all look very healthy and say great things about how good they feel with stabilized blood sugars.

Dr. Bernstein has something like 112 videos on youtube and I’ve spent quite a few hours watching them. He really is a genius and he has helped me to under stand some chemistry and biology that I didn’t quite get before.

I noticed after looking at Pinterest that he’s got quite a few fans on there sharing recipes.

I recently met a whole family who follows this diet for the health of their young daughter and the mom who both have diabetes. I’m going to get together with her sometime soon to ask her how does this work in real life? The book is kind of technical and is a little overwhelming- 472 pages of information.

Anyways, that’s what I’ve been obsessing, (I mean learning!) about lately

 


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My Type 1 Diabetes Diagnosis Story

I realize there are quite a few spelling and grammar mistakes in my story but with a baby in my arms and a three year old crawling all over me… I’m not going to take the time to fix it. 🙂

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Diabetes supplies

 

This week marks 10 years since I was diagnosed with type 1 diabetes. It’s been a decade of both struggling and thriving without a functioning pancreas.

This is my diagnosis story, sharing the time in my life when life became pre diabetes and post diabetes.

The bagpipes played a cheery tuned as men in kilts marched in time to the steady drum. Children ran behind the fire truck eagerly grabbing up candy as it hit the pavement. It was St.Patricks day 2006. I sat down on the side walk, feeling weak and drained. I had a headache. I held an empty gatorade bottle up and licked the rim trying to get one more drop out of it. My throat was so parched. Water. All I could think about was water…. “Will you walk with me to the porta potty again?” I asked Allie. “We just got back!” she laughed. “I know,” I said embarrassed, “they’re so nasty but I have to keep peeing!” We jogged down the road weaving in between people lined up and down the road dressed in green. During the course of the parade I had to keep going back to those nasty port potty’s an alarming amount of times!

We were sitting in the back seat, my dad driving and Allie, her sister and I in back. Allie a type 1 diabetic since she was 8, pulled out her blood sugar meter and dutifully pricked her finger. I watched as the little strip sucked up the blood and a number registered on the screen. “Maybe you should check my blood sugar,” I said with a laugh to make it sound like I was joking but I was actually a little bit concerned. “I will” she said. “Rememeber I checked Hannah’s blood sugar that time and we found out she had diabetes.” I looked at the thingy with the needle in it. I didn’t know a clean needle could be put in it and I knew dirty needles were not safe. “Oh it’s okay..I was just joking” I said.

I was laying on my bed to sick to move. An empty plastic galloon water jug was beside me. My stomach ached from the effort of trying to fit so much water in my stomach but I could not stop drinking. I was so thirsty. Unknowingly I was in the later stages of diabetic ketoacidosis. As defined by Mayo Clinic diabetic ketoacidosis is, “a serious complication of diabetes that occurs when your body produces high levels of blood acids called ketones. Diabetic ketoacidosis develops when the body is unable to produce enough insulin. Insulin normally plays a key role in helping sugar (glucose)- a major source of energy for your muscles and other tissues- enter your cells. Without enough insulin, your body begins to break down fat as an alternative fuel. This process produces a buildup of toxic acids in the blood stream called ketones, eventually leading to diabetic ketoacidosis if untreated.” Ketoacidosis if left untreated will quickly lead to diabetic coma or death.

I had begun to throw up as my body began to reject food, unable to digest it. I thought I had the flu. I lay on the bed reading Uncle Tom’s Cabin. I was at the part where the beautiful, golden curled, gentle spirited little girl died in her bed. I put the book down to make one of my many trips to the bathroom. I momentarily went blind and my head spun as I walked across the hallway to the toilet. I was panting from the effort. I closed the door and saw myself in the full length mirror on the back of the door. I think feeling emotional about the girls death in the book put me in a place mentally where for the first time I could admit to myself that something was very wrong. I lifted up my shirt in the mirror and looked at my ribs sharply protruding from under my skin. I touched my stomach. I looked like I had a 6 pack because my skin was stretched tightly over my muscles with no fat in-between. My skin was dry and flacky. My lips were cracked and bleeding. I sat crossed legged on the bathroom floor too weak to stand up. “God!” I prayed silently, “I’m dying like the little girl in the book. What is wrong with me?..”

My mom was taking my brother to karate class. I asked her to drop me off at the health food store and pick me up on her way back. I scanned the shelfs looking at bottles of herbs and vitamins. I was searching for something to give me energy, to make me gain weight, to make me well again. I was searching for something but I didn’t know what. Thirsty, I picked up a bottle of juice with green spirulina floating around in it. I choose a seat next to the bathroom. I sat down exhausted and tried to catch my breath as the room spun faster and faster around me.

We were going to target. I remember that because that was a place we didn’t often go. It was a short drive. I had to have my mom stop on the way there so I could run into a gas station and pee. We pulled into the parking lot and I ran into the store just making it to the bathroom. I then walked to the other side of the store where my family was. I walked to where they were when I had to pee. I started a fast walk to the bathroom, then a jog, I just about made it to the door of the ladies room when my body took over and I peed my pants trying to make it to the toilet. My body didn’t care that I was almost 14 and too old too wet my pants. I was dying and my kidneys were trying with all their might to purge the excessive sugar built up in my blood stream through urinating.

As I cried and had to go find my mom to tell her I peed myself and had to leave, in that moment she realized for sure I had diabetes. Her best friend at the time ironically had type 1 diabetes and she had been googling symptoms unsure of what was wrong with me. Back at the house my mom called my pediatrician and listed my symptoms. It was 5 in the evening and the doctor’s office was closing but the doctor was concerned enough that she said to bring me in and her and her staff would stay there until they saw me.

I sat on top the crinkle paper on the examination table. I had peed in a cup that was going to be tested for sugar and for a UTI and now I was waiting. The doctor came in and her professional smile turned to a look of fear. She had my mom go out of the room. “Megan,” she said concerned as she drew her wheely chair close to me. “Have you been dieting?” “No, I told her. I’m so hungry, I’ve been eating more than I ever have because I am so hungry but I don’t ever stop feeling hungry. Lately when I’ve tried to eat I throw up. I guess I’m sick.” “Have you ever heard the word bulimia?” she asked me. “Are you making yourself throw up because you think your fat?” I was confused by the question but I was interrupted before I could answer by the door swinging open and a nurse coming in. “There is a lot of sugar in her urine.”

The pediatricians eyes grew wide as she watched the nurse prick my finger with a needle and put it into one of those little machines I had seen Allie use. My blood sugar was almost 600. (Normal is between 80-120). Things began to move at a rapid pace as my mom was called back into the room and the doctor told us we needed to get strait to the hospital for an antibody test. She hastily explained that I had diabetes, she presumed type 1 but said they would confirm that at the hospital. In a few sentences in between making phone calls to Lawrence and Memorial hospital she explained that my white blood cells were mutant and had mistook my pancreas for a foreign invader and had killed the insulin producing cells of my pancreas. She told me that tomorrow I would go to Hartford Children’s hospital and they would take care of me there. I asked her if I shouldn’t eat until then. “You can eat whatever, just don’t drink soda or juice.”

I sat in numbed silence as we drove the short distance to L&M hospital. My mom crying called our pastors wife as we drove. At the hospital the lab took blood. I waited around in the waiting room until a heavy set woman came with a clip board. “You have the antibodies active in your blood, the diabetes is type 1. As your doctor told you have an appointment made at Hartford Children’s hospital tomorrow and they will teach you every thing you need to know. Okay? ” “Okay.” And then we left.

To this day I have no idea why I was not kept over night in the hospital and why I was not put in the ICU and immediately started on insulin. I don’t know why I didn’t see a doctor at the hospital. It was only by the grace of God that I did not die that night. My blood sugar was so high and I was in such an advanced stage of ketoacidosis, I could have died that night.

We got home late and I was hungry. Even though the Dr. said I could eat anything I though that since I had diabetes I should eat something low carb. I ate a piece of lasagna! I had no idea what a carb was! If my blood sugar was 600 before the lasagna I can’t imagine what it got up to that night. Definitly high enough to kill me. It was the first night in weeks I had slept through the night. I was desperately sleep deprived because even at night I had to pee every 15 minutes to an hour. This night I was so dehydrated I had nothing left for my body to pee.

I called Allie that night..”Allie, I told her, I was at the hospital today, I have type 1 diabetes.” “Oh my gosh! Oh my gosh! Mom! She yelled, Megan has diabetes! Type 1…”

My alarm went off while it was still dark the next the morning. It was time to make the hour drive to the hospital. I tried to move. My legs… my legs weren’t working. My muscles were contracting painfully as I experienced severe dehydration from all the peeing. My mouth was filled with gross syrup taste. I rolled off the bed using my arms to support me. I don’t remember the rest of this morning or the drive to Hartford. I only remember dragging myself out of the house leaning on stuff to support me as my legs refused to work.

My mom, and step dad at the time along with my 2 younger homeschooled brothers and sister came.

My next memory is of receiving my first dose of insulin. The doctor explained that this was a “shot in the dark” because there was no way to know exactly how much to give me because every person’s body produces different amounts of insulin. The diabetes educator Brittany told my mom that she was going to have to learn to give shots, that this was life now and besides her protests she was going to have to administer the first dose. “I can’t do it!” she cried, the syringe in her hand. “You don’t have a choice, Megan needs this if she is going to live.” I pinched my arm and held it towards her, “Come on, you can do it. See, I don’t even feel it at all,” I lied.

The next 8 hours or so we spent in a room with a diabetes educator being bombarded with a huge amount of information. Thankfully at almost 14 I was very mature and memorized every piece of information because I knew my life depended on it. How to draw up a syringe, what is high blood sugar, what is low blood sugar, what to do when you’re sick, how to treat a low, ketones, how to test for ketones, how to get the bubbles out of the syringe, what to do in the event of a seizure, don’t let the insulin get too hot or cold, what is a carbohydrate, how many carbohydrates are in every food, and on and on and on…

I understood for the first time what insulin was as I studied a cartoon drawing in a pink panther book that was designed to teach kids about diabetes. There was a bus inside a persons blood stream labeled “insulin.” Boarding the bus was sugar and nutrients from the food eaten. The bus in the illustration carried it’s load to the cells and loaded them up with their fuel. In another illustration, the insulin was a key that unlocked the cell and allowed the fuel to go in.

I was sweating profusley soaking my clothes. My hands trembled violently. I could bearly pick up a syringe or take notes with a pen as my body reacted to my blood sugar slowly began to come down. “I’m low,” I panted to the diabetes educator as I pointed to the page of the book where the illustrated pink panther was experiencing hypoglycemia. “Prick your finger and find out.” It was was still very high she explained but that I would feel like this for a while because my body had gotten used to the feeling of high numbers.

We took a brake for lunch. The only place to get food was a Friendly’s in the hospital. A Friendly’s! My siblings loaded their plates with fries and ordered extravagant ice-cream sundaes. I ordered a salad and water. We took the food back up to the education room and the educator helped me look up the salad in my new carb counting book. I was surprised to learn that it was actually very high in carbs. I drew up my second dose of insulin so I could eat and she pinched my arm as I poked it into my skin and pressed down on the syringe feeling the insulin burn like cold fire under my skin.

I still don’t know why at the end of that day I was sent home. Most newly diagnosed diabetics are kept for a time on an IV to restore electrolytes and fluid from the dehydration. I was not.

The trip home I lay back in my seat exhausted to my core. I clenched my teeth fighting the urge to vomit.

Within weeks the insulin was restoring my body. I gained weight and was able to retain fluid. My skin took on color again and was no longer cracked and flaky. On the outside, I looked like a healthy teenager, but on the inside, one of my vitals organs had been destroyed by my own body. And living with one of your organs missing is no walk in the park. Yes, I can be healthy and am healthy but it takes 24/7 diligence and work to stay alive. If I ever stop taking my insulin and pricking my fingers I will die.

I’ll end this with a list of symptoms of type 1 diabetes. Knowledge is power. If you have diabetes your own knowledge is what will keep you healthy and alive. Doctors, especially pediatricians and emergency room doctors are unfortunately dangerously uneducated about the disease. Misdiagnosis is way to common. Diabetes gets misdiagnosed as everything from the flu to bronchitis to failure to thrive, and in teenager girls especially, an eating disorder. Children die at the hands of uninformed doctors. After the white blood cells kill the insulin producing cells, time is limited before it is to late. In my own story above I went from seemingly healthy to very sick in a matter of 2-3 weeks. Youtube, “my child died of type 1 diabetes.” Unfortunately there are to many stories where the doctor prescribes tylenol or antibiotics and sends the patient home.

This is not to say there aren’t some great doctors out there doing everything they can to find out more about this disease and help their patients.

Signs of type 1 diabetes:

excessive thirst

excessive urination

bed wetting

sudden unexplained weight loss

symptoms of dehydration

headaches

blurred vision

dizziness

mood swings and sudden change in personality

sweating

shaking

vomiting

a “sweet taste” in the persons mouth

fruity smelling breath

fatigue and exhaustion

increased appetite or no appetite

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My callused and scarred fingers after being pricked at least 6 times a day for the last 10 years

 

Since this is the internet and I’m writing about a medical topic I want to put a disclaimer that I’m not a doctor or a diabetes educator. I’m sharing my own experience of living ten years with this disease.

Day In The Life Of: Diabetes and Pregnancy

I know before I had my first child it was hard to find examples of what life looked like with diabetes and pregnancy. There is plenty of medical literature but I wanted to hear from a real life mom who was juggling life, motherhood and diabetes and see what it actually looked like. I decided to write a post like that here in my own little corner of the internet.

Keep in mind that diabetes care looks different for everyone and I know stereotypes about what diabetes care should look like can be annoying. This is what it looks like for me today in this stage of pregnancy (31 weeks.)

I decided for the sake of sharing that as I went about my day when ever I stopped to do something diabetes or pregnancy care related I would snap a picture to give a little insight into what my everyday looks like.

IMG_3380   It’s a little after 1:00 a.m and I woke up to use the restroom. I don’t set a timer to take a night time finger prick but the more information I can gather about what my blood sugar is doing the better, so if I wake up I’ll do a finger prick.

IMG_3368 Your wake up number is one of the most important numbers of the day to get. Mine was 90 which was fine. Around 80 is normal but anything under 100 is acceptable. I wake up around 5:30am but I don’t eat breakfast until my daughter does around 7:30 to 8:00 and since my blood sugar was not high this morning I don’t take any extra insulin at this time. I am on an insulin pump (the t slim) so through that I get small amounts of insulin dripped in me around the clock (called a basal insulin) If I eat or need to correct a high number I will take a dose called a bolus.

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To cut out some of the variables that could cause fluctuating blood sugar when I am pregnant I usually eat the same thing for breakfast every day or something very similar. I am having 2 fried eggs with two pieces of Ezekiel bread (a high protein high fiber bread.) 2 slices after subtracting the dietary fiber equals 26 carbs. I take a small correction to try and lower my number of 97 to my goal of 80 and the rest is to cover the toast. For breakfast I take 1 unit of insulin for every 6 carbohydrates. For me this is quite a bit of insulin. My pre pregnancy carb to insulin ratio was 1:10 but pregnancy causes both insulin resistance and an increased need for insulin to grow a baby. I take a pre breakfast number in addition to my wake up number because although todays number was very close some days my pre breakfast number is much higher due to something called the dawn phenomenon where hormones that become active after we wake up cause insulin resistance and high blood sugar.

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I take my vitamins at this time which consist of a prenatal and extra folic acid. Extra folic acid is generally recommend to pregnant diabetics, especially those with type 1, because the fluctuating blood sugars can cause our babies to have an increased risk of neural tube defects such as spina bifida and folic acid is known to help prevent spinal cord defects. As you can see I drink water in the a.m. For all types of diabetes, 1, 2 and gestational, during pregnancy, it is usually recommended to have no fruit or milk before noon as that is when the hormones that cause insulin resistance are in full swing and it is the hardest time of the day for the insulin to work with the fast acting sugar in milk and fruit.

I set a timer to remind myself to do a finger prick 2 hours after the time I begin eating.

IMG_3378  The timer goes off and my 2 hour post breakfast number is is 193. Normal is under 130 preferably under 120 during pregnancy. I take 2.48 units of insulin as my correction factor at the moment is set at 1:25. This means that 1 unit of insulin will lower my blood sugar about 25 points. My pre pregnancy corrections factor was something like 1:60. Again, blame it on those pregnancy hormones!

IMG_3369  With type 1 diabetes you will record all your blood sugars and be in contact with your doctor as much as every 3-7 days for 9 loooong months. The needs of your body and your babies body changes rapidly. What may have worked yesterday as far as insulin requirements may not work today and things may be different tomorrow. Especially in the third trimester. Here I am using the computer program that comes with the T slim insulin pump that downloads all my information that I have entered into my pump, then puts it into pdf form that I can email to my endocrinologist.

Speaking of endocrinologists, before you get pregnant or as soon as you get pregnant you need to get one. Most OBGYN’s even the high risk ones don’t know a lot about about type 1 diabetes and would rather an endocrinologist take care of your diabetes. If you are doing shots an OBGYN may be willing to take care of your diabetes but if you are on a pump even the high risk OBGYN’s are pretty clueless. They simply don’t get trained in insulin pumps. If they do their knowledge is still limited compared to an endocrinologists.

Which brings me to this;

IMG_3375 I have four doctors overseeing my pregnancy. Four doctors that I, as the patient must make sure are all communicating and on the same page. Get a pocket calendar! As you near the third trimester the number of appointments gets insane! Non stress tests to listen to the baby’s heart will start twice weekly at 32 weeks. In my situation my doctor is about 1 1/2 hours away. He wants to do one of the NST’s per week but said another doctor in the town I live in can do the other one. It’s up to me to get these NST’s set up starting next week but I have been calling for days without getting through to scheduling. Diabetes and pregnancy consists of lots of paper work, phone calls and driving!

IMG_3385  Speaking of driving.. driving is my pump charging time! Thankfully my car has a USB outlet in it. Today while driving to and from my daughters music class I juiced it up! Others tell me they charge their pumps while they shower but other moms know showers for us last like 5 minutes so I had to find another time to charge it and this works for me!

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Lunch time! It’s sometime after 1:00 and my blood sugar is 64. Pre pregnancy this would be considered low but during pregnancy when your goal pre meal number is 70-80 then 64 isn’t really that low. I had 60 carbs; chicken noodle soup, 1 cup milk (yes i drank right out of the measuring cup!), raw veggies, a cheese stick and a granola bar. I took a little less insulin than i normally would due to the lower blood sugar and took 8.57 units of insulin.

IMG_3388  Two hours later I was a little high but didn’t take any insulin to correct because I still had some insulin on board (insulin that was still active in my body from my lunch bolus.)

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It’s dinner! Did a finger prick, my number had come down to 89 and I was going to eat 50 carbs. I took 8.33 units of insulin to cover my meal of sweet potato, hamburger patty, 1 cup milk, salad and 2 prunes and 1 tbs peanut butter for dessert. (weird I know!)

IMG_3392  Two hours later I was 76. I had a half cup of milk (6 carbs) since I only wanted to bring it up a little. By 10:00 p.m I was still in the 70’s so I had a little more milk and near midnight I was still shaking and unable to sleep so I went ahead and treated with some juice. Unfortunately I woke up the next morning with a high of 136.

So there it is! An “average day” of balancing pregnancy, diabetes and motherhood. Of course those who have been here realize there is really no such thing as an “average day.”

Anyways, I’m hoping this turns out to be helpful to someone! I know I would have been interested in a post like this when I first started having my babies.

Since this is the internet and the internet can be a weird place, I’ll post a disclaimer saying this is in no way “medical advice” just my own experience of living with diabetes