Posted by Emily On May 4, 2017
Today is the first day I feel almost normal. I still felt a little sick/nauseous this morning, but I pushed through and did a workout.
I didn’t push myself very hard during my workout, but I’m feeling really good this morning. My BG were good too. Yay!
So for the record, it took me 6 days to return to normal after symptoms started. It is odd that the symptoms took four days to hit… maybe not. Maybe it’s a delayed response.
I’m glad I feel better because today and tomorrow are garage sale days! Woot! Hoping to unload some stuff!
Posted by Emily On May 1, 2017
Folks, it is still working. Eating gluten-free is allowing my blood sugars to be very stable (for a Type 1 Diabetic, not a non-diabetic) while still eating 30-50 carbs at a meal. I find this amazing.
I tried to document my first couple days in my last post, but it is confusing. There are so many numbers!
I have not been limiting my carbs other than not going crazy. At each meal, I eat what I want and the portions I want. I just make sure they are gluten-free. I have not taken my fast acting insulin since Tuesday, April 25, 2017. Not a drop. My body is able to cover the carb load at every meal.
Since Tuesday, I had been taking my long acting insulin. I thought I might still need it, but on Wednesday evening (4/26/17) I started to go low in between meals. So on Thursday, I lowered my long acting insulin dose from 7 units to 5 units. I had low episodes that afternoon and evening. In fact, I found myself at 86 BG right before bed. Rats. I might go lower through the night! This incurred a late night call to my lovely sister-in-law who is holding my hand through this whole ordeal. I fixed that level through juice but did set an alarm to check my BG in the middle of the night.
On Friday, I lowered my Toujeo dose again to 4 units. Here’s where I get super frustrated. I was low at 10am, 11am, and 12:45pm. By lunch I’m feeling like I need a juice IV! In the middle of those lows, I was at Costco. I know I’m not supposed to drive if my BG is below 100. So me and my two children are just sitting in the van, do-dee-do, waiting for my BG to go up. So frustrating!
Saturday, April 29, 2017, I decide to not take any insulin. Repeated low episodes are so annoying and potentially dangerous. Here is where it all falls apart…
Saturday was not a normal day, Dan was brewing with a friend, and my friend and I were going shopping while the hubby’s watched the kids. I rushed my breakfast and lunch, not eating the carb or calorie load I normally would. While I’m out shopping in the afternoon, I’m feeling progressively “off.” I repeatedly check my BG, but it’s not low. I began around 1:30 with a BG of 148, and I proceeded to check is every 45 minutes or so as I grew shakier and shakier (the lowest reading I had this entire ordeal is 96…not low at all). I also had shortness of breath and the feeling I was about to vomit.
As we are driving home, I start to pass out. I start shouting, “I don’t feel good. I don’t feel good!”
My sweet friend calmly pulls over (bless her heart!). She gets juice ready (the feelings are like a low even though my BG says otherwise). I quickly take 2 units of Toujeo (It seemed like the right thing to do. My BG wasn’t low, but I thought maybe it would stabilize me somehow) and recline my chair.
I start to feel better so we continue on. We decide to pick me up a protein bar at a grocery store, and by the time we are back at the car, I’m feeling like I’ll pass out again.
We try to decide if we should go to the hospital, go home, or call an ambulance.
The feeling hits again a few minutes later so we pull over and call an ambulance. While waiting for it to arrive, I start to feel better again, but I think it’s too weird to not seek medical help.
The ambulance arrives and checks me out. I’m fine. Blood pressure, blood glucose, heart rate (so odd to me, I felt like my heart was racing!) everything looks fine.
We talk my symptoms over with the EMTs. They scold me for changing my dose of insulin on my own, and we leave the ambulance.
We were stopped at a meat market. We decide to go in to get ice cream for dessert. I don’t even make it to the front door, and I start to feel faint again.
Dan and I decide to go to the hospital.
I feel so bad walking in to the ER that I just lay down on the ground while Dan checks me in. Ha!
The ER runs all kinds of tests: EKG, chest x-rays, blood work, urine tests, blood pressure in different positions, etc. I’m fine. 100% clean bill of health. Absolutely nothing wrong with me.
Right. As I lay on the bed visibly shaking. Of course there’s nothing wrong with me.
I’m super scared at this point. They are discharging me, and I can’t calm down. They say I can just come back if I feel bad again. AGAIN??? I STILL feel bad. I’m still shaking!!!
I really feel like I’m going to die, and the hospital has no idea why. Looking back maybe I should’ve taken comfort in this. The Lord knows my time and there’s nothing a hospital or team of doctors can do to change that.
I’m really just scared stiff to leave. The last doctor asks me about my anxiety level. I begin to wonder if it’s a panic attack. I decline any medication and decide to head home.
As I’m talking to the last doctor, I ask Dan to start researching what happens when people stop eating gluten.
We get back to our friend’s house. I still fee rotten. They serve me up dinner quickly, and I start to feel better very quickly. The shaking is still present but the faint/ill feeling subsides. Yay!
I spend the next hour trying to get a hold of my endocrinologist just to run everything by them. Could not using insulin cause this? I really thought the fault lied with me not taking the Toujeo that day.
We get home, get the kids in bed, I get off the phone with the endo, and Dan says, “So it looks like gluten withdrawal is a real thing.” What?
We read several articles that night that tell personal stories of gluten withdrawal being very similar to drug withdrawal. We couldn’t find any medical articles, but there are PLENTY of personal stories floating around the internet.
I’m now one of them. I think I exacerbated my symptoms by not eating enough, but gluten withdrawal is a real thing. I’m a believer. It felt awful, like I was dying.
I’m now 2 days from the episode. The shaking is nearly gone but gets worse if I wait too long to eat. I’m eating every 2-3 hours and feeling fairly normal now. I have not taken any insulin (fast or quick acting) since Saturday, April 29, 2017 at 3:45pm. My endocrinologist agreed with my assessment of my BG and subsequent reduction in insulin. She is completely on board with 0 insulin unless my BG spikes. I have only had 2 readings higher than 150 since I started my GF diet.
- One was because I loaded my system on juice before arriving at the hospital (215 BG…not THAT high really).
- The second was last night. I was 197 before bed. I had a snack mix that evening. I’m wondering if there was gluten in it. Not sure what happened there.
Another example, for lunch today I was 90 BG pre-meal. I ate a lower carb (for me) lunch at 20-25 carbs (all gluten free) and was 126 BG 2 hours post-meal.
Amazing. Everything I’ve read about gluten prohibiting the carbs from absorbing correctly in my gut (instead heading straight for the bloodstream) appear to be correct. Another note, I think the reason this is working too is that my pancreas is not 100% dead yet. I am still producing some insulin and not having gluten in my diet is allowing my body to use that small amount of insulin better.
Posted by Emily On April 27, 2017
I have very hopeful results to share on my gluten-free diet! I’ve only been gluten-free for about 24 hours, but I’m already seeing interesting, promising results.
Let’s talk numbers! This may only interest me, but I’m finding my results absolutely fascinating.
Tuesday, April 4, 2017
I tested my blood glucose (BG) at my brother’s house with a result of 522.
Friday, April 7, 2017
I have all my supplies (insulin, glucometer, plan for how to administer insulin based on BG prior to each meal). For the following week, my BG numbers looked like the following.
|Pre- Meal BG||Carbs||Insulin||Pre-Meal BG||Carbs||Insulin||Pre-Meal BG||Carbs||Insulin||Bedtime BG|
|Sunday||236||?||4||114||?||2||204||?||4||235||Low @ 9pm|
|Monday||209||?||4||95||?||0||142||?||2||211||Low @ 8pm|
You may not notice a theme, but the BG are too high (<150 is goal). There is also a disconnect with the BG before the meal and what I intend to eat at the current meal. With this plan, I was dosing my insulin only based on my BG at the beginning of the meal. This is protocol so as to not overwhelm the patient who is new to diabetes.
This is not my first rodeo, folks. So I pressured my doctor to add carb counting to my management on Thursday, April 13, 2017. They were still hesitant, not wanting to overwhelm me, but I won (or really we won, Dan and I). We left that appointment with my first carb/insulin ratio to hopefully adjust at each meal for the current BG and the carbs I’m about to eat.
Side note: I’m not sure my endocrine office knows what to do with Dan and I. I think we’re a bit intense for them. 🙂
Here are my results after the 4/13/17 meeting:
|Pre- Meal BG||Carbs||Insulin||Pre-Meal BG||Carbs||Insulin||Pre-Meal BG||Carbs||Insulin||Bedtime BG|
|Monday||174||22||1||93||73||2||154||38||1||155||Started working out|
Overall, you’ll notice the BG numbers are way lower, mostly <150. Woot! Progress! Carb counting is obviously working, and the doctors are pleased. I continue on this course until I find the article I mentioned in my last post.
I started eating gluten-free at lunch on Tuesday, April 25, 2017. Here are my results so far:
|Pre- Meal BG||Carbs||Insulin||Pre-Meal BG||Carbs||Insulin||Pre-Meal BG||Carbs||Insulin||Bedtime BG|
|Wednesday||140||27||0||89||60||0||117||20||0||86||AM workout, 3 lows during the day|
So these are still higher than your average non-diabetic person, but what the what?!? To be clear, the above lunch and dinner on Tuesday and Wednesday and Thursday were all gluten-free.
I also take a long acting insulin that’s not recorded in the charts above. I had 3 low episodes yesterday so I think my need for that insulin is decreasing. I usually take 7 units, and today I took 5 units.
I don’t know if this is a fluke or if my insulin will continue to decline. It’s exciting though!
Posted by Emily On April 26, 2017
I have always believed these gluten free diets that abound today are a bunch of hooey. It really goes deep into my worldview. I believe God created the whole world for us. I believe it provides good food in season when we need it. I believe wheat is good for us.
I believe in moderation. I believe in eating whole foods (so if you buy it in a box or bag at the grocery store, it is most likely not good for you).
Thanks to a good friend watching out for me, I came across this article this week: Remission without insulin therapy on gluten-free diet in a 6-year old boy with type 1 diabetes mellitus.
What the what?!?! A gluten-free diet caused this boy’s body to stop attacking it’s beta cells. Seriously?!?! He was able to halt the killing of his pancreas by changing his diet.
A little back story: Dan and I like to watch documentaries, particularly ones on food/diet/health. We strong believe in the power of good food on the body. One of the documentaries did a study on curing cancer through diet. In summary, they were able to halt the production of cancer cells within the body by changing the patient’s diet. I was very compelled by this study, and I told Dan, “If I’m ever diagnosed with cancer, I’m finding this doctor and signing up for this treatment. Why would I not want to change my diet to save my life?”
So here I am today, with a life-threatening (if not managed through medicine or some form) disease that has the potential to be treated through diet.
How can I not try it?
Gluten-free…here I come!
Circling back to God’s goodness providing food on this earth, I am questioning parts of my worldview. Here’s where I’m at now:
- Sin in our fallen world – This takes several forms one possibly being that NOT all food is good for us. I don’t know this for sure, just a guess. The biggest agrument in my mind is that every culture has a basic grain that provides the basis of their diet. How did ours turn against us? This leads me into my next point…
- Sin nature in humans – We are greedy, self-centered people and our corporations are run by human with these tendencies. We farm for profit, and we do all we can to ensure profit: GMO’s, pesticides, unnatural crop rotation, highly processed food, unnatural by-products in our foods (high fructose corn syrup!!!), etc.
I know I’m out there in my views on food. I believe it was all created good, but we messed that up. I’d love to hear your side if you disagree.
Posted by Emily On April 22, 2017
I used to be very disciplined when I was in middle and high school.
- I got up at 6:00 am every morning to make sure I had plenty of time to get ready for school. My school was literally across the street, like a 20 second walk. Ha!
- I read my Bible daily. I had a Daily Bread kind of a devotional for teens. I saw my parents faithfully reading the Bible, so I did too.
- I played sports: gymnastics in middle school then volleyball in the fall and cheerleading in the winter in high school.
- I worked out every day except Sunday.
- I took leadership opportunities when I could: translating a school handbook from Spanish to English, “leading” my sports teams (in quotes because looking back I was such a know-it-all, take charge kind of person, this was probably not my finest moments).
- Taking a very full course load my senior year of high school. I, and 4 other students, even elected to take Physics after school because that was the only time the teacher could teach the class. Yes, disciplined and crazy I was.
This discipline even bled into college but that’s when things started to slide downhill. The last few years, I’ve had spurts of discipline. I have good intentions to set goals and accomplish things, but they all fall to the wayside eventually.
The last 2-3 years I’ve had lofty aspirations at the beginning of the year. I tentatively set some goals for the year but never really follow through. I knew I could be doing more as a wife/mom/friend, but those ideals only lasted until February, if then.
In January, I had the same burn in my soul to accomplish much, to do great things. So I decide to challenge my small group at Bloom (a mother of young children program at my church, I lead one of the small groups). What are they going to accomplish? How can we change how we manage our households? How can we hold each other accountable and encourage each other?
Really, my encouragement was all for my own benefit!
- I needed accountability.
- I needed encouragement to stay the course.
- I needed someone else to be determined with me!
The two areas I identified for myself were budgeting and household cleaning.
I love to budget. I love to manipulate numbers. In my former life before kids, I was an actuarial analyst for an insurance company. I like numbers.
However, my impressively complex spreadsheet budget was super time consuming to actually use. I’d have the best intentions to do it once a week or even every two weeks, but I would fall behind and then delay even longer because I knew how long it would take to catch up 1 or 2 months of receipts.
I decided to give You Need A Budget (youneedabudget.com) a try. I had tried about 8 months prior but never took the time to really understand how the software worked, so I gave up quickly. This time I persisted. I took their live webinars. I learned how the software worked. I changed my view of how to manage our money. Guess what? We’ve made HUGE gains in our financial stability in the last four months! I (we) was quite lax in sticking exactly to our budget. We’d over spend a little here, a little there but never really adding things up because I was only doing our budget every 1 or 2 months. Recipe for disaster.
As far as taking care of and cleaning my house, I was constantly overwhelmed because it felt like all of the house needed to be cleaned all. the. time. The thought of cleaning overwhelmed me because I just couldn’t tackle the whole house all the time.
Enter Pinterest. There are a million household cleaning schedules on Pinterest. I did a bunch of research as to what would work for me and here’s what I ended up with: I use Google Keep and a series of lists to keep myself organized. I have one list for daily tasks that I just un-check all the items at the beginning of the day and try to hit everything on the list each day. Then I have six other lists (Monday-Saturday) with specific cleaning chores so that by the end of the week all of the major cleaning tasks have been done. I have stuck with this plan, with a few bumps in the road due to sickness, since January.
Ok, whew, that was my intro! It turned out so much longer than I thought it would!
All that to say, this diabetes diagnosis would have been so much harder if I hadn’t been working on my self-discipline since January of this year.
- Financially – We aren’t a wealthy family. We make a very average income. However, we are on top of our budget, since January. With the diabetes diagnosis, we will now have an additional $100-$200 expenses every month. If you are a budgeter, giving each penny a task, then you will know this is a huge expense. I actually don’t know how we are going to cover it yet. God is faithful. He will provide. Of that, I have no doubt.
- House Upkeep – The house isn’t a disaster after doing zero cleaning for over a week! Prior to January, my house would have totally fallen apart, been disgustingly dirty, after a week because it wasn’t just one week from cleaning the toilets, it was actually 3, 4, or 5 because I had put it off for so long!
- Spiritually – In the past few years, God has changed me tremendously. He has exposed my pride, anger, and lying. He has shown me His grace as He forgives and changes these patterns in my life. Diabetes has been overwhelming these last few weeks. My brain is constantly churning and thinking. If God hadn’t been working on my anger and general self-centeredness, I’d be losing it so much more often than I am now. I’m not saying I’m perfect, but I’m so much more patient and gentle than I was in the past. I would have a much harder time adjusting if I wasn’t continuing to ask God to change me to be like Him.
In addition to these major areas, I’m learning to be more disciplined new areas that are kind of funny but needed for the long haul:
- Checking my feet everu night for bruises, cuts, and callouses. I moisturize them every night before bed now to keep the dryness at bay.
- Staying on top of medical bills, paying them on time, keeping my files organized for future audits/tax purposes.
- Keeping up on the clutter: insulin and it’s supplies, glucose meter and it’s supplies, sharps disposal, etc. I need work on this, but I’m trying not to let the diabetes paraphernalia take over our house (or the great number of boxes and packaging material they come with!).
This is where I’m at for today. I’m so thankful God put these things on my heart (even though they’ve taken years for me to even tackle somewhat successfully!) and that I was working on them prior to April 1, 2017.
Posted by Emily On April 21, 2017
I think the hardest part to manage with my diabetes diagnosis is the juggling of my needs with my children. My kids are not always needy, but wouldn’t you know, they NEED something the minute my blood sugar is dropping and I need to care for myself.
I’m all about kids learning patience, waiting their turn, and compassion/empathy for others. But folks, I’m in the thick of it. This is what I’m working on with my kids every day. I was working on this every day before the diagnosis. The diagnosis has exacerbated the need, but also make the lesson that much more difficult for me to teach. I might be feeling fine OR low/shaky, high/irritable, screaming headache…all really difficult times for me to quietly explain how we should react/how we should act like Jesus to others.
One night, I was getting the boys ready for bed. We were in the final 10 minutes. You know that time: heading up the stairs to brush teeth, potty/change diaper, pajamas on, pray, and go to sleep. This is the last push of parenting for the day. It is a critical time for me to remain calm, show Jesus’ love and compassion to their crazy energetic bodies and get them those final steps into bed. Then…my chest starts to tremor. (I feel the shakes in my core first, like the organs inside my rib cage are shaking.) Then my legs and arms (as I’m climbing the stairs with my wild monkeys). As we are brushing our teeth I realize I probably shouldn’t push through. I probably need to stop and take care of myself because I don’t know for sure how long bedtime will take (one monkey likes to take 20 minute poops sometimes!) and I don’t know how quickly my blood sugar will drop.
Therein lies my dilemma, I’m almost to the finish line for the day. Just a couple more minutes and the kiddos are in bed. BUT, I need to stop, test my glucose level, drink juice, set a timer (I WILL forget to test again!), then return to bedtime.
If I stop bedtime, you know what my kids will do, right? Yep, wild, crazy monkeys. They will inevitable be naked in the basement in no time at all, and I will have to start all over again.
Responsibility to care for myself and teach my kids to be patient wins, I go downstairs to care for my blood sugar then return to bedtime.
It didn’t even turn out that bad. My oldest waited patiently on the potty, and my youngest was only a touch crazy, running around half naked.
Bedtime continued. They were in bed only a few minutes late.
This whole diagnosis has been challenging not only my kid’s patience as they sit at the lunch table staring at their food but waiting for mommy to eat, but to my patience as I need to pause regular activities to care for myself. I’m not sure which is harder. Both are challenging. God is giving me more ways to grow to be more like Jesus. Right now, that looks like more patience in mommy and more patience in the wild, crazy monkeys. Truthfully, who couldn’t use a little more patience?
Posted by Emily On April 20, 2017
I’m not sure if this is a side effect of T1 diabetes, but I seem to be extremely susceptible to dehydration. Maybe. I’m getting about 1 killer headache per week. I don’t really know the cause, but my first guess is usually dehydration.
I never got headaches until I had my AVM surgery. Headaches are a side effect of the surgery, and I spent the first year post-surgery mapping them out over time. I saw them consistently taper off until they were few and far between.
Since that time, around 2010, I’ve only gotten an occasional headache that I could usually directly link to being lazy on my water intake. Once the headache would hit, I’d chug 8-16 ounces of water and it would be gone in an hour or so.
The weird thing about these last 3 headaches is they are in the same location of my head (above my left temple) as my “AVM headaches.” My dehydration headaches are usually across my forehead. Hmmm…
While I don’t think my brain is bleeding, pain in the same areas as my AVM issues make me stop and think.
I’ve had one per week since my diabetes diagnosis. Drinking water doesn’t help. Tylenol doesn’t help. I’m not really sure what’s going on.
Posted by Emily On April 15, 2017
Self-pity is addicting. It feels good to tells myself I don’t deserve what’s happening to me. It feels good to roll the scenarios of the last week around in my head.
How did I get a diagnosis in one week exactly? I called my endocrinologist, who needed a new referral, my primary care physician doesn’t practice anymore, find a new primary care physician, whoops set 2 appointments with PCP, cancel one appointment, run to a PCP visit that day, wait 24 hours, call endo to see about referral, explain nicely that I’m VERY concerned and need to see the endo, push, push, push, fight, fight, fight…
I did so much work! I am amazing.
Proof of this lies in the fact that the endocrinologist can’t believe I (1) got an appointment with her with two days notice and (2) even noticed my symptoms in the first placed. I am so good.
Well, since I did all that work, poor old diabetic me, I can take a lazy day. No housework for me. I’m spent. I’ve done SO MUCH today. Let me think it over again…
I can get so wrapped up in what happens to me: the sequence of events, the unfairness of it all, or even the unknowns to come.
However, wallowing in my own self-pity gets me nowhere. In fact, it actually takes me backwards.
- Emotionally – I haven’t truly accepted the diagnosis. I’m not fully in denial but definitely not embracing and moving forward.
- Physically – While my body is doing fine, the physical state of my house and home are a wreck. It feels like too much to vacuum, too much to wipe off the mirrors, too much to clean the toilets. I’ve been thinking about my food, insulin, health insurance, glucose test strips running out, comparing health plans during open enrollment, etc. etc. How could I possibly do housework right now???
- Spiritually – A song comes to mind: Trust and obey, for there’s no other way to be happy in Jesus than to trust and obey. I’m not really trusting Jesus with anything if I’m stuck in my own self-pity. That’s the thing about self-pity. It only focuses on myself, not on God, as my focus should be. I’m not seeing the blessing in the diagnosis. I’m not asking to see the blessing in the diagnosis. I’m not seeing how God can use diabetes to make me more like Him. I’m not seeing how I can be impacting others for Christ. I’m not seeing any of this because I can only see myself. Poor old broken me.
I may stumble sometimes, ok, all the time, but I know Jesus. I know He has more for me. I know He is working in me, and He designed my pancreas to last only 33 years and 3 weeks. I don’t know how He’ll use this for my good and for His glory, but I’m trusting Him to do so.
So I picked up a rag, cleaned the mirrors, and wiped finger prints off the windows/appliances/trash can. You know what? It only took 10 minutes. At the end of the cleaning, I had a boost in my step because I had accomplished something that day! I had 2 items to check off my To Do list!
The boost also allowed me to open my Bible and seek Jesus, not for what he could do in me, but just seek Him. I’m in John 19 now, Jesus’ death on the cross. It’s beyond horrific. The older I get the more I can picture and imagine the beatings, the mocking, the pain, and He did it all in quiet submission to the Father so I could have a relationship with Him. Me, this “broken” (sarcasm font) human, wallowing in self-pity because boo-hoo I have to inject a teeny needle into my body so I can eat and live. There’s nothing like true suffering by someone who actually didn’t deserve it to bring me back to reality.
Jesus is my life. Serving Him with what I have is my desire. He just gave me another tool with which to serve Him, and a whole new circle of people to show Christ’s love. What a blessing!
Posted by Emily On April 14, 2017
I’m still trying to accept the Type 1 diabetes diagnosis. I realize this isn’t a death sentence. This is a completely livable condition. It likely won’t kill me, unless I fail to manage it.
Therein lies the burden: management.
I am still in the adjustment phase. I’m not carb counting (yet seeing the need for it with each passing meal!) rather I’m administering insulin based on the level of my blood sugar. It’s a retro adjustment rather than a forward-looking adjustment. If I am high at the beginning of a meal (due to what I ate at the last meal) then I take more insulin regardless of what I plan to eat at the current meal. I totally see why diabetics count carbs, and I’m actually looking forward to it. Weird-o.
Back to management: it’s exhausting. I have two young boys who command a lot of my attention, and when they aren’t, I’m “managing.” I’m testing my glucose level, administering insulin, cooking a meal, answering the phone (talking to doctors, pharmacists, SO MANY diabetic support programs, etc.), talking to the health insurance company AGAIN, etc. etc. It’s exhausting. My introverted self has not had a moment to think. Until right now, really, as I type this. Super dad took the boys out golfing, and I am typing away. Processing, if you will.
I have some thoughts to get out. Here it is in all it’s selfish glory: I feel like I’ve already suffered enough, medically speaking. This diagnosis doesn’t seem fair.
I feel guilty even typing that. I know it’s wrong. God made my body exactly as He intended. Psalm 139 says
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
This passage was especially comforting to me after I went through my AVM surgery. God put my AVM in my brain. He did it on purpose. It didn’t surprise Him. It was enormously comforting to know that my AVM was a part of His plan, His purpose, for me.
It was easier to accept His plan for me with a one time surgery that turned out so positively. It is a lot harder to accept a lifetime diagnosis that requires constant care and attention.
And yet, I know my God is faithful and true. He would not let anything happen to me outside of His plan. His plan was for my pancreas to stop working normally around April 1, 2017.
The week before the diagnosis, I was studying John 18 and 19 in my BSF Bible study. This is the trial and torture of Jesus before His crucifixion. Pilate’s indecision was a decision against Jesus. Even when Pilate saw that Jesus was not guilty of the crimes the Jewish leaders accused him of, Pilate did not stand up for truth. I left BSF that day with the question “Is Jesus my Savior and my King?” stuck in my head. I wrote it at the top of my notes. Is it true? Is Jesus Lord of everything? All areas of my life?
Later that day, I wrote this down
Is Jesus my Savior and King? Is He really Lord of my life? Am I acting on the truth given to me? I sure pray it is so. Lord, use me; change me, don’t let me be stagnant. Make me more like you.
I wrote this on Wednesday, March 29, 2017, three days before I started having symptoms of Type 1 diabetes. I believe God’s purpose with the diagnosis is to change me, to use me, to make me more like Him. I refuse to let this opportunity to go to waste. I want it to be used for God’s glory. Anything less and I will be striving for nothing.
Posted by Emily On April 13, 2017
To start at the beginning of the story, click here.
I vividly remember my first shower when I got home. I hadn’t been alone to take a shower in 5 weeks. I was a little nervous. What if I fall? What if I get tired? What if my incision splits open? (Ha, so I didn’t really have that thought exactly, but I didn’t like touching my incision. It gave me the hebejeebies!)
I had a shower stool in the shower, so really, tiring and falling wasn’t a true concern. As long as I was smart and sat down when I needed to, I’d be fine.
I really think I used the stool my first few showers than never again. While at home, going up and down stairs and doing all the care for my person, I built up stamina quickly.
Nevertheless, the first shower is unnerving.
Dan sat on the bed in our room and waited for me. He’d have been at my side in an instant if anything were to go wrong. I can still picture him sitting there. I wonder how nervous he was. Maybe he knew I could do it, and it was no big deal. It was a big deal to me.
I chose to continue my outpatient therapy at Mary Free Bed. Even though I wouldn’t have any of the same therapists or even the same facilities, there was a level of comfort and trust with the care I had received at MFB. This decision greatly impacted my family though. Dan and I lived in Grand Haven, Michigan at the time, a good 50 minute drive from MFB. My mom and two sibilings were living with us at the time to fill in the gaps of care should Dan need to be at work (I was to be under 24 hour supervision for the first 30 days of going home). So that meant a LOT of driving for my mom.
I don’t know how often I had therapy, at least three times a week, maybe more. So lots and lots of driving.
I had a harder time enjoying my outpatient therapy. On the one hand, the therapists were changing all the time. Their schedules are so full that it takes a while to get enough space in one therapist’s schedule to see the same one consistently. On the other, I was living mostly on my own and I still had therapists tell me I was “slow.” My ego was so big. I still couldn’t handle this.
Don’t they know what I’ve been through? I’ve had OPEN SKULL brain surgery! I’ve had my head cut open, put back together, and LIVED! I learned to walk again, move my arm, fingers, wrist, tongue…they don’t move quite correctly but isn’t that minor??? I’m smart. I work as an actuary. I know math like these therapists have never seen. I can write Excel formulas that can make your eyes swim. I…I…I…
Big ego. I’m not kidding. I thought I was so smart that there was no way I could be slow. I was so wrong.
Speech therapy was still my least favorite and the most likely sessions for me to be told I was slow. My primary therapist got on my nerves, a lot. She loved pop culture quizzes and games. I don’t know pop culture. I don’t know current TV shows, game shows, or music. I might recognize a song, but I’d have no idea who sang it. Thankfully I was with it enough to tell her that I just don’t know pop culture. It’s not that my brain isn’t working; the information just isn’t there. 🙂
So we ended up playing a lot of card games. Again, not my strong suit but better than the “Who sang this song?” quizzes!
I remember my speech therapist releasing me from our sessions. We had already finished our speech session, and I was working with my occupational therapist. She approached us and asked, “How would you like for our sessions to be finished?” I can just imagine my face lit up with pure joy…ha, I feel a little bad looking back at how overjoyed I was to be finished with speech therapy. I don’t know my response exactly, but I was probably overly emphatic about how much I want to be done.