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.
Posted by Emily On April 12, 2017
I started this blog with the intention of being a home decor or possibly a DIY blogger of some sort. I like alliteration, and I was quite pleased with myself on my blog title: Flawed yet Functional. “Good one, Emily! Repeating “F” words, short yet meaningful, easy to remember (at least for me it is!), useful in many applications houses (no house is perfect), furniture (same), decor (always somewhat flawed, I’m not a professional!), my body (my AVM story), etc. Yes, this is a good title with a variety of uses and applications in blogging.” Little did I know just how useful!
While I still love decorating and renovating our house, my family has taken precedent the last few years. The desire to write, share my story, and encourage others still exists. My most recent physical struggle brings this blog to the forefront of my mind again. What if my story (and it’s continuation…) can encourage/guide/warn others? What if by writing out my story, I not only help myself process but others as well? In that vein, I no longer write for the hope of being internet famous or even making money on this ole blog, I feel the need to share. God is working something out in my life. I don’t know what yet, but I think writing here may help me figure that out.
So what’s happened?
Last week was Spring Break here in West Michigan. My husband and I intended to spend it quietly at home for the most part. We had two weekend trips planned, but those were going to be small and low key. The first weekend trip had us staying in a hotel, and my husband knew to purchase a couple gallons of bottled water knowing that hotel water doesn’t taste wonderful. Friday I was drinking it fine. I thought it tasted a little odd, but I was thirsty (and the hotel water truly was yucky) so I just kept refilling my water bottle.
Friday – In the evening, it occurs to me that I’ve filled my water bottle a lot, several times since arriving that afternoon. Just how many times, I’m not sure, but it is starting to occur to me that it might be more than normal.
As it happens when you drink a lot of water, you must urinate often. We had a hotel room with a separate bedroom, and of course, the bathroom is in the bedroom. We had put the kids down in the bedroom so they could have the quieter, darker room. The things we parents do for a good night’s sleep! I had to sneak into the bedroom several times that night. Hmm, that’s odd. I still thought I just drank too much water.
Saturday – I notice how thirsty I am and decide to keep track. I drank 75 ounces before lunch. Yikes! That’s a lot! Now I’m wondering what the cause is. I immediately think it’s the bottled water.
There must be something in that water!
I mention my issues and concern to Dan, and we both think it’s odd but likely the bottled water. My body must not be used to it…or something.
Sunday – I think my thirst returns to almost normal. It’s still high, but not 75-ounces-before-lunch high.
Monday – I’m driving my kiddos to a petting zoo in the morning, and I notice my far-sight is blurry. I couldn’t focus further down the road. In fact the more I tried, the blurrier it got and the more my eyes watered. By the time we returned from the petting zoo, it had returned to normal. Weird, but I didn’t really give it too much thought. I talk it over with Dan. “Diabetes?” I mention “Probably, not but I’m seeing my brother’s family tomorrow. I can test my glucose level there.”
Tuesday – I’m heading to my brother’s house, and my vision is blurred again. I’m aggravated/nervous. It’s looking like diabetes to me, but I feel fine. Absolutely fine. I test my glucose level as soon as I arrive. I’m chatting it up with my sister-in-law and niece, not really paying attention to the glucose meter.
“Aunt Emily!!!” My niece exclaims.
I look down at the meter, 522 it reads. “Is that finished counting down? Like, is that the number?” I ask.
“Yes! That’s your blood sugar!” My sweet adolescent niece exclaims. Shock and awe are all over her face.
“You need to see someone right now!” My sister-in-law informs me.
Sigh. It looks like I have diabetes. Tuesday began an adventure to get back into my endocrinologist to confirm the diagnosis of diabetes and determine type 1 or type 2.
By Friday, I had been diagnosed with Type 1 diabetes as a 33 year old. In exactly 1 weeks time, I went from a healthy adult to an adult with a lifelong disease. I went from someone who rarely goes to the doctor to one who will be seeing 1, 2 or even more on a regular basis. I went from someone who spend very little on healthcare to one who will be maxing out her health plan every year. I went from someone who eats healthy yet doesn’t consider what or how much she’s eating to someone who needs to know every morsel she ingests.
It’s a touch overwhelming. I’m still at the beginning, but that’s where I am today: a human being with a hole in her brain and a pancreas that doesn’t work anymore. Flawed? Yes. Still functional? Absolutely.
Posted by Emily On February 12, 2016
To start at the beginning of the story, click here.
Discharge from Mary Free Bed
In the days leading up to my discharge from MFB, I focused on walking to all of my therapy sessions (my wheelchair was taken away from me a day or so before discharge, what a feeling!) and getting as many practical daily life tips I could get from my therapists.
We determined that I should have a stool in the shower at least for a while until my stamina had returned more. All it took was one email to our friends and a stool was found for me to borrow. Isn’t God amazing? He knows what we’ll need and provides just the right thing at just the right time. I don’t know too many 25 year olds who can readily locate a shower stool.
I remember doing some formal testing with Ken during our final Occupational Therapy sessions. I don’t remember the results or what exactly they were testing, but I must have passed. 🙂 I had quite a few tips and tricks up my sleeve already for showering myself, getting dressed, moving about the house, and basic cooking. The staff at MFB made sure I did as much as possible myself, but it was a relief to know Dan (or my mom for a short while) would be there to help should I need it.
I had a game plan to continue outpatient therapy in three areas: speech, physical, and occupational. Hmmm, that seems wrong now that I type it. I for sure did speech and occupational as an outpatient, but I’m not 100% sure about physical therapy.
I remember telling people I was in patient therapy for 11 days, so I must have been discharged around December 22, just before Christmas. My goal throughout therapy was just this: to be home for Christmas, and I was. Again, isn’t God good?
**Picture complements of Lacey Rumley. This is the Rumley Christmas December 25, 2009.**
I don’t remember much from my discharge day, but here’s the snippets I can recall:
- A “long” walk down the cold hall that connects the MFB building with the parking garage.
- Dan had pulled our little red car up to the door
- It was COLD out!
- He helped me into the passenger seat. It felt so weird to be in a car again!
- Walking in the front door of my home in Grand Haven. My dad holding my dog, George, back on his leash. George couldn’t give two hoots what anyone was telling him. He wanted to see his mama!!
- Sitting on the green chair in the living room, petting my dog. All is right with the world.
While not the end of the story, this closes the biggest chapter: hemorrhage to getting home from the hospital. I still had about a month of outpatient therapy to complete before I was back to work and able to be alone (without supervision, just in case something were to happen).
I was able to share my story to my MOPs group in December 2015. The piece I found most shocking as I was preparing to speak is the short timeline. It seemed like an eternity back in 2009, but from the day of my hemorrhage to returning to work and a full life was only 2.5 months. What?! Thursday, November 12, 2009 to February 1, 2010. Such a short period of time and yet crazy to think how much happened in that time period.
Moving on…must finish my story: Some memories then outpatient therapy…
Posted by Emily On February 5, 2016
To start at the beginning of the story, click here.
I’ve been composing this list over the last few weeks of random snippets of memories from my hopsitalizaiton or time at Mary Free Bed. They are in no particular order, and they likely won’t make sense to anyone but me. But these are the feelings, memories, and things I don’t want to forget.
- How I washed my hands in the bathroom sink at MFB. The feeling of cold seeping in through my left, limp hand as it rests against the side of the sink. Using my right to do all the work of washing: lift left hand, place in sink, turn on water, get soap, rub soap on the left hand, lift hand to water to rinse, rub soap off in water, turn off water, grab paper towel, dry left hand dry right hand. My therapists insisted my left do everything as if it functioned normally.
- “Losing” my leg (in hospital) and left arm (in MFB) – When there is no sensation and the brain’s wiring is off, the brain can’t “find” parts of the body…panic ensues. Ask me how I know.
- Seeing the writing on the walls as I was coming out of my coma. I believe they were prayers for me and other people at the hospital. Possible hallucination, but I think God gives encouragement and strength in ways beyond our imagination. Who am I to say he didn’t open eyes to see his love for me and the love of my friends and family, literally written all over the walls.
- Rice krispie treats on the side table from Melissa – Total hallucination! It was the boot for my foot… there were no rice krispie treats, unfortunately.
- Dan sleeping with his head on my hospital bed – Night after excruciatingly long night, he watched over me and cared for me, to the point of utter exhaustion. (He would say he wasn’t exhausted. God gave him strength. He had very little sleep those days, 4-6 hours. He was and is my wonderful protector. He is always watching over me and taking care of me.)
- Dan washing my hair at MFB, and spraying the water all over my face, which I hated. 🙂
- The smell of the soap at MFB and smelling it again at City Flats Restaurant. Funny the things that trigger memories.
- Basking in the sunshine in the atrium of MFB for 20 minutes in between therapy sessions.
- Cream of wheat for breakfast every morning lovingly sweetened to perfection by my wonderful husband, Dan.
- My mom reading the Bible to me in a dimly lit hospital room.
- Visitors hesitantly huddled around my hospital bed during the week of my second bleed.
- Poster board with messages of hope and healing (and wonderful drawings by my nieces, nephews, and sibilings!) hanging on the wall. I still have this, Lacey! I intend to frame it and hang it in our house someday. It is a powerful reminder of the love and support I had from friends and family through this time.
- Peace. Absolute, complete peace. The first few uncertain days were very peaceful for me. Jesus had me wrapped in perfect peace.
That’s all for now…might be more later!
The next part of the story is outpatient therapy and adjusting to life at home.
Up next: My Side of the Story – Part 41
Posted by Emily On February 5, 2016
To start at the beginning of the story, click here.
It has been so long since I’ve written, I had to look back at where I ended…what a nice trip down memory lane! There are so many details I would not have been able to recall if I hadn’t written them down. It makes me a little sad I didn’t finish my story then. I will remember even less now! Here goes anyway…
I am in inpatient therapy at Mary Free Bed Rehabilitation Hospital. I covered my physical therapy in the last post. This one will focus on my Occupational Therapy.
Occupational Therapy focuses on fine motor skills (hands, arms, fingers) and works to get you functioning in everyday life to your fullest degree.
These sessions were brutal. Not so much a hit to my ego like speech therapy was, but it was just plain hard physically. My left arm/hand/fingers were the last to regain mobility and required the most focus of my therapy (I am still working on improving my left hand/fingers to this day).
It has been too long for me to recount my experiences chronologically, so I’ll just write little stories about what I remember. This will be even more flow-of-consciousness than my usual writing…enjoy!
One of my first sessions, I remember sitting in my wheelchair next to the therapy bed/mat. Dan is right next to me, and my therapist is explaining that he’s going to lift my arm up for me to work on my range of motion.
Side note: my arm is in a straight sling full time when I am out of bed. The shoulder joint is so weakened and the muscles have atrophy so the weight of the arm could easily dislocate my shoulder.
The therapist takes my arm out of the sling and lifts it straight up in front of me, heading towards the ceiling.
I immediately become nauseous. I tell him I’m about to lose it. He quickly lowers my arm and they get me a bucket.
We try a few more times with the same result: me heaving into a bucket. Weird, right?
My therapist isn’t sure exactly what is going on, but he says the brain does crazy things when it has been through trauma. He suggests we use “self talk” to try to re-wire my brain.
Does moving your arm hurt? No.
Should moving your arm make you nauseous? No.
He would have me repeat phrases like this as we moved my arm in the therapy session, and he had me use them as I went about my day in other sessions and in my room. It was like trying to talk my brain out of being nauseous. It seems funny now and odd to explain, but it worked! The nausea stopped eventually. It would creep back at times when I tried to do a new activity with my fingers or wrist, but now I knew how to deal with it. Isn’t the brain crazy/amazing!?
The first activity we focused on was getting the arm, as a whole, to move. We did lots of movements with just arm weight or holding a light rubber ball. It was crazy to me that the range of motion was so limited. I had very little muscle left, so you’d think my arm could move any which ways, but it couldn’t. We set goals for how far my arm should be able to move and Dan and I worked and worked each break in sessions and at night to achieve these goals.
One thing that was new to me, is the focus on diagonal movements. The therapists said we rarely use our arms in a straight up and down motion. Usually there is an angle to our movements. So while we did straight up and down lifts, we did a bunch of cross body exercises.
Also, it is easier for the brain to make pathways if both sides of the body are making the same motion. So as often as I could, I would do any stretch or exercise simultaneously with my left and right arm.
One session I remember vividly was practicing grocery shopping and picking up produce and items off a shelf. MFB had a little grocery store set up complete with produce bins, shelves, grocery baskets, etc. just like a regular grocery store. My first attempts to pick up a piece of fruit (maybe a banana or lemon…not sure) were so disheartening. I remember flopping my arm onto the produce bin (think trying to lift your arm with only your shoulder muscle) then trying with all my might to get my fingers to curl around the fruit and bring it back to my basket.
I think Ken moved us quickly to another activity. I wasn’t ready for this. It was a huge reality check for me though. I had so far to go.
Movement was slowly returning in my arm and wrist, but my fingers were taking a while.
Movement in my fingers was not progressing as my therapists had hoped. So one morning they decided to try an electrotherapy. Basically they put a brace on the affect area that has electrodes that touch certain nerves. The race then sends electronic pulses to activate the nerves and make the fingers move.
This scared the bejeezers out of me.
Looking back I sort of understand the fear. It was something I couldn’t control taking control of my body. I didn’t understand fully how it worked or how it could benefit me. Not to say the therapists didn’t explain it, they did. I just couldn’t see the long term benefit of this therapy.
So as they prepped the machine, wetting the pads, putting the pads on the brace, and fitting my wrist and hand into the brace, my anxiety rose and rose. They knew I was nervous, so they said they’d start the machine on low and go from there.
They slowly ramp it up…
Immediately my fingers twitch and start contracting.
Fear takes over. I think I asked them to stop.
It didn’t hurt. I still didn’t have a lot of sensation in my left hand, so anything I could have felt would have been minimal anyway.
It scared me though. To my core. Maybe it was not having control of my body. I can’t explain it though, but I didn’t like it.
That was the one and only time I had this therapy.
Present day me wishes I had done this therapy more. I do have a lot of functioning now in my left hand, but I have that little bit of regret “What if I had done that therapy more?” I don’t dwell on it. It doesn’t consume me, but I do wonder if I could have progressed more had I been less afraid.
Therapy sessions focused partly on functional tasks/movement and partly on more exercise-like movement. The functional tasks were far more interesting and rewarding.
One day, my task was to bake a batch of brownies from a boxed brownie mix. (Of course we would get to enjoy the fruit of my labors once they were baked too!)
My therapist helped me figure out solutions to every step of the process that would enable me to mix and bake the brownies myself. Remember, independence is the MFB goal for every patient.
First up, opening the package. Seems like a no brainer, right? Rip it open. (These were bags of mix actually with a “tear here” type of opening.)
How to you rip open a package with contents that can spill if your left hand can’t hold the bag still?
Holding the bag in my left arm wan’t an option. I’d spill the mix for sure.
Solution: scissors! Stand the bag up on the counter. Hold it steady with my left hand, to the best of my ability but really it was standing on its own. Then cut the top off with my right hand.
Things like this are so simple, but not easily thought of when you have a disability. The therapists were training me how to think of different solutions to everday problems.
Second: pour mix in bowl and add eggs. Since this was therapy, I had to do everything with my left hand, even cracking the eggs. I guarantee there were egg shells in those brownies! 🙂 My sweet family ate them without comment later that night though. My therapist and I laughed over and over at the difficulty of cracking eggs with a disabled hand. I did it though!
Third: mix the brownie batter, about 50 strokes.
I always wondered why the instructions even bothered to tell you how many strokes to do. Do they really think you can’t tell when everything is mixed through? For this therapy session, it gave me a goal. I had to hold an spoon and stir 50 times.
It was exhausting.
I learned another life functioning tip at this point: weighted utensils are easier to hold/use for someone with my type of weakness/lack of sensation. When the signals to and from the brain are weak, it is just easier to feel the object you are holding if it is heavier and larger.
I used a weighted spoon to stir the brownies. It was just a regular spoon that had a foam piece (and something heavy?) taped around the handle. I remember the therapist showing Dan and I how to alter our utensils at home so that I could be more independent in cooking and eating. It is amazing how much easier the weighted spoon was. My therapist made me try both ways (weighted and regular), and I had way more success with the weighted one.
This session was so fun and stands out in my mind to this day. I accomplished a task (yummy treats!) and learned how to modify my kitchen so I could live more fully in the future.
I really regret that I have forgotten this therapist’s name. It was a lady, maybe in her 50’s? Family, do you remember? She was so wonderful to work with, and I remember her beaming at the end of this session.
Now six years out, I can’t remember much more from the occupational therapy sessions. My left hand was the slowest to return to functioning so I focused on these sessions in inpatient and outpatient therapy the most. I think I did occupational therapy twice a day while in inpatient therapy and three times a week…maybe two?…in outpatient therapy. I am so grateful for the functioning that God has returned to my body. The weakness and uncoordination I feel is so minimal compared to where I started: zero movement or feeling on the left side of my body. God is so good.