With Easter rapidly approaching, we are closing in on Jackson's self-set goal date of quitting his thumb habit. Yes, he is almost six and we have not been able to get him to stop.
We have been working on this for YEARS. We tried the foul-tasting no bite nail polish. He simply learned that he'd get used to the taste after a while. We did the toy rewards for increments of time that he went without it. We have shown him pictures of what could happen to his permanent teeth.
We've yelled. We've bargained. We have pleaded. No joy.
So, last week, we bought the T-Guard. (Jury is still out on this one...) Yesterday was the first day of use. Here is a recap:
There was a spectacular exhibit of will regarding putting it on...after which he exclaimed that it was pretty cool. Then, he was disturbed by the soap being stuck in it when he had to wash his hands, until I showed him the hole at the bottom for precisely that reason...and, I dried it with a Q-tip.
While cleaning up Legos, he realized he could use it to carry more Legos in his hand. Bonus!
After walking away from said cleaning (since I was repeatedly the sole cleaner), I went upstairs to take a shower. While getting in, I heard him begin to throw a fit. Unable to self-soothe, he screamed pitifully, "Can SOME-body heeeeelp me, please!" I rescued him this time.
At bedtime, he proudly showed Dada how he put it on like a big guy. Yet, it took almost an hour to get him to sleep because he "doesn't know how to fall asleep without Suck Thumb." Finally, after forever of me laying with him, using guided imagery of his future driving police cars, putting handcuffs on bad guys, and holding his weapon, I was able to help him fall asleep.
Unsolicited advice warning: give them the pacifier...we were so against it and now wish he wasn't addicted to a part of his body. Granted, I know there will be a day when there's a whole different obsession...
Perhaps we shouldn't have started this the day after Daylight Savings time? Oy.
Tuesday, March 12, 2013
Thursday, March 7, 2013
Feminist Musings of a SAHM with a Steam Mop
Yesterday, we were supposed to get walloped with a huge snowstorm, "supposed to" being the operative word here. It did not happen, yet my boys were home with me for the day. It was quite lovely because I had a terrible night of sleep and got to hang out in bed for half the morning while Brent entertained Jackson. And then, as my afternoon fibro fog began to hit me, I got to take a nap. God bless my husband; he is a good man. (Note: I did manage to get our oven self-cleaned and the racks washed; that was my great achievement of the day.)
Today, my energy is still low, but better than it was yesterday. Today it was my turn to be "on" in the morning for Jackson's two hour delay. (I will say, this whole county school system VA has going is a crock...They might have gotten a few inches of snow west of us, but we had literally sunny skies and a few puddles this morning. C'mon, FCPS. You can do better than this!)
I digress. Jackson accidentally dropped a glass cup this morning, leading to a full-on attack of my kitchen floors. After removing him from the glass fragments, I swept. I vacuumed. I took him to school and then called Brent.
A dear neighbor of my allowed me to borrow her Steam Mop weeks back and I literally fell in love with it. I mean, covet city here! So, while everything was removed from the kitchen, I called Brent with my request to purchase our very own Steam Mop. I'd done my homework and found that the cheapest I could get the one that had the best reviews was at the Exchange...and that's not far from Jackson's school, right?
So, with his...permission (?)...I purchased it. The fact that I had to ask "permission" is perhaps a bit haunting in and of itself. Brent and I have always had the mindset that we both work; he just happens to do it outside the house while I'm in it. Yet, we have recently committed to each other that we would be more cautious in our spending. So, this being a larger-ticketed item, I felt like we had to have a conversation about it. Let's refer to it as a financial agreement instead of "permission" then.
Hurried home. Read the instructions. Got myself to steaming the tile flooring that I LOATHE. But with this steam mop, I could literally do it all day. The instant gratification I felt when I saw the floor cleaned without having to be on my hands and knees scrubbing for an hour was worth every single cent I spent on that beloved Steam Mop of mine.
This must have been what it was like for my grandmother to have a washer and dryer instead of having to wash clothes by hand and put them on a line, right? Or, the liberation it felt to put dirty dishes into a machine that would clean and sanitize them in an hours time...I just never thought it could make me so...simply put, happy.
This domesticated, stay-at-home Mama (whose husband still questions whether or not I'm a feminist) has a heart that is filled with joy today. Part of me feels like I'm taking a step backwards, considering most feminists would believe that I have given up that stance by being a homemaker, plain and simple. Let alone that something as domesticated as a steam mop could fill my bucket...
The feminist in me questions how an appliance could do this. It brings up all sorts of negative feelings. Part of me feels like the money could have been spent in so many other ways that would benefit my family or others. Part of me feels a bit guilty- I am overjoyed over an item, a thing, that in another country might be worth a month's worth of meals? And still, another part of me screams This is what your life of wanting to go to graduate school for Women's Studies has become?
But, is that what this is all about?
Honestly, I don't believe so. I think it's the simple liberation that my floors can be cleaned and I won't have to scrub them until my knuckles are raw. The fact that in my current state of body, I can spend more time focused on the things that bring simplicity to my life and allow me to focus on my family, not being such a Martha. And, that in this day and age, I have the CHOICE to stay at home, that I am not forced by society to do so...that is okay with the feminist inside of me.
Today, my energy is still low, but better than it was yesterday. Today it was my turn to be "on" in the morning for Jackson's two hour delay. (I will say, this whole county school system VA has going is a crock...They might have gotten a few inches of snow west of us, but we had literally sunny skies and a few puddles this morning. C'mon, FCPS. You can do better than this!)
I digress. Jackson accidentally dropped a glass cup this morning, leading to a full-on attack of my kitchen floors. After removing him from the glass fragments, I swept. I vacuumed. I took him to school and then called Brent.
A dear neighbor of my allowed me to borrow her Steam Mop weeks back and I literally fell in love with it. I mean, covet city here! So, while everything was removed from the kitchen, I called Brent with my request to purchase our very own Steam Mop. I'd done my homework and found that the cheapest I could get the one that had the best reviews was at the Exchange...and that's not far from Jackson's school, right?
So, with his...permission (?)...I purchased it. The fact that I had to ask "permission" is perhaps a bit haunting in and of itself. Brent and I have always had the mindset that we both work; he just happens to do it outside the house while I'm in it. Yet, we have recently committed to each other that we would be more cautious in our spending. So, this being a larger-ticketed item, I felt like we had to have a conversation about it. Let's refer to it as a financial agreement instead of "permission" then.
Hurried home. Read the instructions. Got myself to steaming the tile flooring that I LOATHE. But with this steam mop, I could literally do it all day. The instant gratification I felt when I saw the floor cleaned without having to be on my hands and knees scrubbing for an hour was worth every single cent I spent on that beloved Steam Mop of mine.
This must have been what it was like for my grandmother to have a washer and dryer instead of having to wash clothes by hand and put them on a line, right? Or, the liberation it felt to put dirty dishes into a machine that would clean and sanitize them in an hours time...I just never thought it could make me so...simply put, happy.
This domesticated, stay-at-home Mama (whose husband still questions whether or not I'm a feminist) has a heart that is filled with joy today. Part of me feels like I'm taking a step backwards, considering most feminists would believe that I have given up that stance by being a homemaker, plain and simple. Let alone that something as domesticated as a steam mop could fill my bucket...
The feminist in me questions how an appliance could do this. It brings up all sorts of negative feelings. Part of me feels like the money could have been spent in so many other ways that would benefit my family or others. Part of me feels a bit guilty- I am overjoyed over an item, a thing, that in another country might be worth a month's worth of meals? And still, another part of me screams This is what your life of wanting to go to graduate school for Women's Studies has become?
But, is that what this is all about?
Honestly, I don't believe so. I think it's the simple liberation that my floors can be cleaned and I won't have to scrub them until my knuckles are raw. The fact that in my current state of body, I can spend more time focused on the things that bring simplicity to my life and allow me to focus on my family, not being such a Martha. And, that in this day and age, I have the CHOICE to stay at home, that I am not forced by society to do so...that is okay with the feminist inside of me.
Thursday, February 28, 2013
Fibro-my What?
Okay...Surely you're all wondering why, exactly, I have been AWOL with this whole bloggity-blog thing for the past month. Well, maybe only one of you have been. (Bec, that's you.)
Well, I have been riding a roller coaster of appointments and treatment changes and honestly, trying to educate myself before coming back to you all.
As of, eh...early February, I have been diagnosed with Fibromyalgia, which is a chronic, wide-spread pain syndrome that is quite fascinating. Apparently, if you think of a person's pain and external stimuli as a car radio set on a reasonable level with, oh, small children in your car...a person with Fibromyalgia experiences that same stimuli (internal or external) as a stereo cranked up so high that you'd hear it a mile a away from the inside of your own vehicle.
When the Neurologist and Rheumatologists were pushing on parts of my body that nearly knocked me off the table in pain, I now know why. Those are called "Tender Points;" there are 18 possible ones in a fibromyalgia patient's body.
Fibromyalgia is known to cause fatigue, random pain, depression, soreness, stiff joints, sleep issues, and a myriad of other symptoms. However, there is no specific diagnostic test that a person can have that points directly to it. A lot of people (read: medical providers and average Joes) consider it a "junk drawer" diagnosis.
A part of me has been celebrating that we now know:
1) where the pain is coming from- why I practically live on ibuprofen and a heating pad every night
2) why I'm exhausted easily after minimal exercise or daily routines
3) where thyroid issues and adrenal gland issues and other of my random problems throughout the years have been connected
But yet, there's a huge part of me that is grieving. There's a stigma that fibromyalgia is not a "real" diagnosis. (To which I say, do your research...I have been and it's legit.) I'm tired. All the time. I call it "Mack-truck-itis." I'm sore. I'm dealing with three weeks of going back and forth with the insurance company about why I shouldn't have to drive to Bethesda for physical therapy from Kingstowne.
All that just to say, if I haven't shared with you lately that you're important to me, you are. I'm running on fumes and I wanted to let you all in on why. I think I have found the new direction for my blog...Not necessarily complaining to all of you about my struggles, but educating people and sharing the facts about this syndrome that everyone's heard about from the big-pharma commericals but no one really knows about.
I'd love to share this journey with you, as I humbly work with my mind and body (and copious amounts of caffeine) to learn, share and educate.
Well, I have been riding a roller coaster of appointments and treatment changes and honestly, trying to educate myself before coming back to you all.
As of, eh...early February, I have been diagnosed with Fibromyalgia, which is a chronic, wide-spread pain syndrome that is quite fascinating. Apparently, if you think of a person's pain and external stimuli as a car radio set on a reasonable level with, oh, small children in your car...a person with Fibromyalgia experiences that same stimuli (internal or external) as a stereo cranked up so high that you'd hear it a mile a away from the inside of your own vehicle.
When the Neurologist and Rheumatologists were pushing on parts of my body that nearly knocked me off the table in pain, I now know why. Those are called "Tender Points;" there are 18 possible ones in a fibromyalgia patient's body.
Fibromyalgia is known to cause fatigue, random pain, depression, soreness, stiff joints, sleep issues, and a myriad of other symptoms. However, there is no specific diagnostic test that a person can have that points directly to it. A lot of people (read: medical providers and average Joes) consider it a "junk drawer" diagnosis.
A part of me has been celebrating that we now know:
1) where the pain is coming from- why I practically live on ibuprofen and a heating pad every night
2) why I'm exhausted easily after minimal exercise or daily routines
3) where thyroid issues and adrenal gland issues and other of my random problems throughout the years have been connected
But yet, there's a huge part of me that is grieving. There's a stigma that fibromyalgia is not a "real" diagnosis. (To which I say, do your research...I have been and it's legit.) I'm tired. All the time. I call it "Mack-truck-itis." I'm sore. I'm dealing with three weeks of going back and forth with the insurance company about why I shouldn't have to drive to Bethesda for physical therapy from Kingstowne.
All that just to say, if I haven't shared with you lately that you're important to me, you are. I'm running on fumes and I wanted to let you all in on why. I think I have found the new direction for my blog...Not necessarily complaining to all of you about my struggles, but educating people and sharing the facts about this syndrome that everyone's heard about from the big-pharma commericals but no one really knows about.
I'd love to share this journey with you, as I humbly work with my mind and body (and copious amounts of caffeine) to learn, share and educate.
Wednesday, January 30, 2013
NoVA Weather?!?
Although we were not in Northern VA (NoVA for all of my unknowing non-Metro DC buds) for "Snowmageddon" or whatever ridiculous name that storm was called. We have survived:
1) An earthquake
2) A hurricane (Irene)
3) Snow "storms" (AKA: dustings) that cause apocalyptic accidents
4) Super Storm Sandy
5) The Derecho
Call me a quitter if you'd like, I'd rather not round out our weather life experiences in NoVA with a tornado. I know, it's not all about me...however, I would love to be able to go to bed tonight without the fear of a tornado ripping through my town house. (That isn't REALLY mine...that we have to move out of in about four months...I digress.)
So, if you can all send good juju and prayers to us here, it'd be much appreciated. I'll do the same for you tonight.
Sunday, January 27, 2013
Just a day in the life...
Of a military housewife...
(For those of you who have not enjoyed the musings of Sally Brooks, please enjoy this video. Warning: R-rated, lots of swearing! Do not watch with kids around! Thank you, Rob, for introducing this to me years ago...it still makes me laugh to date.)
So, we knew there was the chance that our three year lease would end and our homeowner would return to NoVA while we're still here for another year. We just hoped we'd be able to extend our lease one more year.
This week, we found out that our nightmare is a reality. Our landlord will be returning this summer, requiring us to procure new housing for a year prior to us PCS'ing (allow me to translate: permanent change of station) next year.
Jackson is in Kindergarten at a school that we love. We're going to work our tails off to not only stay in this small school district, but we're also going to try to stay within our beloved 80-something unit Mews neighborhood.
The good side of this is that the population in metro DC is so transient that we know two or three sets of neighbors that plan on moving this summer. Bonus.
The downside to this? Moving without movers...and having to prepare for a bumpy road ahead that involves two sets military orders and household goods moves (neither of which are ours) coinciding to make this process work.
Or, a storage unit. (A little fact about me: Too much tv has caused me to have a strong love/hate relationship with storage lockers. Love them because of Storage Wars! Hate them because of all the crime shows/movies that have made me believe that there probably is a dead body in the one next door to the one we'll have to rent. Gives me the creeps!)
Someone suggested a Pod. Great idea if you didn't have a HOA that runs the neighborhood like a fascist community. (Animal Farm anyone?)
It's dizzying. Okay...maybe not to the extent of seizures, but makes my head hurt none the less.
Sidebar: And, I've been "seizure" free for over a week now. However, I'm only averaging four to five hours a sleep a night. And thus, the pendulum has been shifted and the gauntlet thrown at my ever-loving treatment team.
Happy Sunday.
(For those of you who have not enjoyed the musings of Sally Brooks, please enjoy this video. Warning: R-rated, lots of swearing! Do not watch with kids around! Thank you, Rob, for introducing this to me years ago...it still makes me laugh to date.)
So, we knew there was the chance that our three year lease would end and our homeowner would return to NoVA while we're still here for another year. We just hoped we'd be able to extend our lease one more year.
This week, we found out that our nightmare is a reality. Our landlord will be returning this summer, requiring us to procure new housing for a year prior to us PCS'ing (allow me to translate: permanent change of station) next year.
Jackson is in Kindergarten at a school that we love. We're going to work our tails off to not only stay in this small school district, but we're also going to try to stay within our beloved 80-something unit Mews neighborhood.
The good side of this is that the population in metro DC is so transient that we know two or three sets of neighbors that plan on moving this summer. Bonus.
The downside to this? Moving without movers...and having to prepare for a bumpy road ahead that involves two sets military orders and household goods moves (neither of which are ours) coinciding to make this process work.
Or, a storage unit. (A little fact about me: Too much tv has caused me to have a strong love/hate relationship with storage lockers. Love them because of Storage Wars! Hate them because of all the crime shows/movies that have made me believe that there probably is a dead body in the one next door to the one we'll have to rent. Gives me the creeps!)
Someone suggested a Pod. Great idea if you didn't have a HOA that runs the neighborhood like a fascist community. (Animal Farm anyone?)
It's dizzying. Okay...maybe not to the extent of seizures, but makes my head hurt none the less.
Sidebar: And, I've been "seizure" free for over a week now. However, I'm only averaging four to five hours a sleep a night. And thus, the pendulum has been shifted and the gauntlet thrown at my ever-loving treatment team.
Happy Sunday.
Friday, January 25, 2013
Celebrating One Week
As of this afternoon, it will be one week since I had my final "event," you know...those sneaky little suckers that we were (apparently) falsely calling seizures.
*Doing a little dance in my chair!*
In the past week, I have taken some time to be introspective about all of these symptoms and it has made me realize the power that medication can have over our bodies. This is the second time I have been told that I was "on such a small dose" of a medication that there was "no way" that my symptoms were caused by the meds. On both occasions, the doctors that told me that were wrong.
I am humbled in my recognition of just how sensitive my body is. This makes me appreciate just how hard it does work to function on a regular basis.
In other news...
I saw Rheumatology yesterday and the doctors there believe that I may have fibromyalgia, which comes across as funny to me. I'm the woman who wasn't feeling contractions while I was in the beginning stages of labor. I've always been able to "suck it up" as far as pain goes to finish a softball game or a run or a 21-mile walk.
So, this comes as a shock to me. However, it could give many answers to the multitude of symptoms that I have had for a long time without relief.
I follow up with my family care doc next week...we'll have PLENTY to talk about then.
I sincerely thank you for all of your thoughts and prayers regarding the past two months. I think I'll continue this conversation with you all, just not "from the floor." I suppose I'll have to come up with a new tagline for my blog. Any suggestions?
*Doing a little dance in my chair!*
In the past week, I have taken some time to be introspective about all of these symptoms and it has made me realize the power that medication can have over our bodies. This is the second time I have been told that I was "on such a small dose" of a medication that there was "no way" that my symptoms were caused by the meds. On both occasions, the doctors that told me that were wrong.
I am humbled in my recognition of just how sensitive my body is. This makes me appreciate just how hard it does work to function on a regular basis.
In other news...
I saw Rheumatology yesterday and the doctors there believe that I may have fibromyalgia, which comes across as funny to me. I'm the woman who wasn't feeling contractions while I was in the beginning stages of labor. I've always been able to "suck it up" as far as pain goes to finish a softball game or a run or a 21-mile walk.
So, this comes as a shock to me. However, it could give many answers to the multitude of symptoms that I have had for a long time without relief.
I follow up with my family care doc next week...we'll have PLENTY to talk about then.
I sincerely thank you for all of your thoughts and prayers regarding the past two months. I think I'll continue this conversation with you all, just not "from the floor." I suppose I'll have to come up with a new tagline for my blog. Any suggestions?
Saturday, January 19, 2013
One Doctor's "Seizure"...
Is a Neurologist's "event."
The good news is that I had my Neurologist appointment Thursday. He gave me the test results from my EEG's.
Apparently, one showed some slowing in both hemispheres of my frontal lobe, caused possibly by my multiple childhood head traumas and concussions. Yet, even with those findings...
My EEG's did not show an seizure activity in my brain. Meaning, the electrical activity is not epileptic in nature.
However, he was cautious in his explanation of my "events." He says they are "real" and "something is going on," but it is not epilepsy.
Our next steps...
1) One of my meds that I take for my sleep disorder can cause "convulsions" and "seizures" so we're taking that out of my treatment under the advisement of my prescribing doctor.
2) I have a follow up with Rheumatology next week to discuss their view on my illness, considering I've had multiple ANA tests come back "slightly positive." My PCM has said lupus is always a possibility...
3) Talking with the Neurologist, Brent and I were able to strongly make connections to my "triggers." It seems that I have trouble with too much sensory input. The doc believes that for whatever reason, my brain is going into shut down mode (which for me is seizure-like behavior) whenever I have too much stimuli coming in. Apparently, my brain is having a hard time filtering stimuli out. The problem is, how do we get my brain to function normally??? (And...what IS normal? Lol)
We will continue to work towards my overall health being better. I am trying to have the utmost faith in my treatment team as we continue to move forward.
The good news is that I had my Neurologist appointment Thursday. He gave me the test results from my EEG's.
Apparently, one showed some slowing in both hemispheres of my frontal lobe, caused possibly by my multiple childhood head traumas and concussions. Yet, even with those findings...
My EEG's did not show an seizure activity in my brain. Meaning, the electrical activity is not epileptic in nature.
However, he was cautious in his explanation of my "events." He says they are "real" and "something is going on," but it is not epilepsy.
Our next steps...
1) One of my meds that I take for my sleep disorder can cause "convulsions" and "seizures" so we're taking that out of my treatment under the advisement of my prescribing doctor.
2) I have a follow up with Rheumatology next week to discuss their view on my illness, considering I've had multiple ANA tests come back "slightly positive." My PCM has said lupus is always a possibility...
3) Talking with the Neurologist, Brent and I were able to strongly make connections to my "triggers." It seems that I have trouble with too much sensory input. The doc believes that for whatever reason, my brain is going into shut down mode (which for me is seizure-like behavior) whenever I have too much stimuli coming in. Apparently, my brain is having a hard time filtering stimuli out. The problem is, how do we get my brain to function normally??? (And...what IS normal? Lol)
We will continue to work towards my overall health being better. I am trying to have the utmost faith in my treatment team as we continue to move forward.
Wednesday, January 16, 2013
Isolating vs. Honoring Self
It's all a matter of perspective, really.
I had about a two hour time frame last night that was rough. I was beat and I awoke this morning with sore muscles and little energy. I had a Spouse's Club connection meet-up mid-morning and had a ride set up.
My struggle...to go or not to go. If I stayed home, it would potentially mean a morning of yoga pants and scrapbooking. If I went to Panera to meet up with other local spouses, I'd have the chance to get out of the house for a bit and connect with people.
However, these very people, very sweet and kind, are not like my friends who know about my medical situation. In turn, it means outing myself to them. Also, I'd have to get a little dressy, go to a potentially loud, bright place and be in fear of having an episode in public without the comfort of someone knowing what to do.
I know what you're thinking...Educate them. Don't fall victim to being afraid of being judged. But, I'm just not in that mind set this morning. I'm in more of a place of, let the heating pad be my friend. Allow my brain to enjoy the peace of my bedroom (which is currently the most tranquil it has been in a while since that pile of ironing that was gracing my chair is completed). Less stress, more relaxing.
I found myself requesting the assistance of my good friend, Kay (a fellow rest-in-bed type), and Brent. Kay took the approach of telling me to ask myself a few introspective questions about how I would feel tomorrow about missing the event, etc. Very wise, Kay. I like the way your mind works. Brent was of the "the more stress you endure in the morning, the worse you'll feel later" camp. After weighing my options, I realized that missing this outing today could do more damage than good.
I decided to stay home. Some may say that I chose to isolate myself from the outside world, being as it is the third day since I've left my house. (Yes, I did just have to look at my calendar on my phone to figure out when I had actually left the house...Pause for a second...I may have to do something about that.)
But, I want to look at it as I have chosen to honor myself. I have chosen to listen to my body, in all of its weakness and pain. I have chosen to feel comforted in my home, where right now, my mind does not feel like there is a ping pong game happening inside of my head (like there was last night...). I have chosen to put my family first- the more energy I conserve during my day today, the more likely I am that I will be able to enjoy their company tonight.
And, tomorrow is another day. I go to my Neurologist. So, I will leave the house. Just not today.
I had about a two hour time frame last night that was rough. I was beat and I awoke this morning with sore muscles and little energy. I had a Spouse's Club connection meet-up mid-morning and had a ride set up.
My struggle...to go or not to go. If I stayed home, it would potentially mean a morning of yoga pants and scrapbooking. If I went to Panera to meet up with other local spouses, I'd have the chance to get out of the house for a bit and connect with people.
However, these very people, very sweet and kind, are not like my friends who know about my medical situation. In turn, it means outing myself to them. Also, I'd have to get a little dressy, go to a potentially loud, bright place and be in fear of having an episode in public without the comfort of someone knowing what to do.
I know what you're thinking...Educate them. Don't fall victim to being afraid of being judged. But, I'm just not in that mind set this morning. I'm in more of a place of, let the heating pad be my friend. Allow my brain to enjoy the peace of my bedroom (which is currently the most tranquil it has been in a while since that pile of ironing that was gracing my chair is completed). Less stress, more relaxing.
I found myself requesting the assistance of my good friend, Kay (a fellow rest-in-bed type), and Brent. Kay took the approach of telling me to ask myself a few introspective questions about how I would feel tomorrow about missing the event, etc. Very wise, Kay. I like the way your mind works. Brent was of the "the more stress you endure in the morning, the worse you'll feel later" camp. After weighing my options, I realized that missing this outing today could do more damage than good.
I decided to stay home. Some may say that I chose to isolate myself from the outside world, being as it is the third day since I've left my house. (Yes, I did just have to look at my calendar on my phone to figure out when I had actually left the house...Pause for a second...I may have to do something about that.)
But, I want to look at it as I have chosen to honor myself. I have chosen to listen to my body, in all of its weakness and pain. I have chosen to feel comforted in my home, where right now, my mind does not feel like there is a ping pong game happening inside of my head (like there was last night...). I have chosen to put my family first- the more energy I conserve during my day today, the more likely I am that I will be able to enjoy their company tonight.
And, tomorrow is another day. I go to my Neurologist. So, I will leave the house. Just not today.
Tuesday, January 15, 2013
Wisdom of a Child
Sometimes, I want to wallow in my lot in life right now. But, I truly cannot. My faith will not allow it, nor will my son, Jackson.
Granted, it hasn't been all peaches and cream. There has been some defiance and set backs regarding his attitude. But, how much of that is the independence of a kindergartner and how much of it is reaction to my current medical fiasco? We don't know...
However, here are a few examples of how Jackson has apparently perceived my situation...
1) It's not really a big deal.
The other day, while I was prepping dinner and boiling water, I had a doozy of a seizure. I had been able to get myself out of the kitchen, remove my glasses and get onto the floor. Brent and Jackson were outside. I was in recovery, lying on the floor when Jackson came running upstairs. "Hi, Mom!" he shouted as he whizzed past me. "Uhhh..." was all I could get out. Then, I hear the toilet seat lift and him clamor onto it. Brent came in a few minutes later to find me still lying on the floor. When I approached Jackson about his non-reaction later, he said "Mama, I just really had to pooooooop. What's more important? Checking on you or getting my poop in the potty on time?"Dually noted, my child. After a smidge of education, I sent him on his way to play. Kids.
2) It doesn't matter what people think.
While getting him ready for bed last week, he says "Mama, I missed you at library today. How come you aren't at my school anymore?" I replied, "Jackson, we've decided that until my episodes are under control, I'm not going to volunteer at your school." Simply, he just asked "why?" I tried to explain how I don't want to scare the other students. "You won't scare them, Mama. You're just my mama" was his reply. I tried to tell him about how I don't want the teachers or librarian to have to take time away from the students to take care of me. He says without missing a beat, "Well, if it happens when I'm there, I'll take care of you. No one will have to do it but me." I tried to tell him that I will come back when I'm back to being my old self. To which he replied, "But, Mama. You are still my mama. You CAN still help. They won't be scared of you." Sage wisdom from a little boy who wants things to return to the way they were before.
3) I can take care of you all by myself.
This one I struggle with deeply. I feel like I am in some way stealing part of his innocence from him by allowing him to have to "take care" of me when I'm not feeling well. Yet, he just dutifully rubs my back and tells me it's okay when I have a seizure with him around. Yesterday, while he was playing with his matchbox cars, he asked me a question. I couldn't respond as I was staring off into no-where land. Jackson said "Mama, are you okay?" I didn't answer. He stopped what he was doing, took my glasses off my face, and went back to his toys. I had a mild seizure with little movement but vocalizations while sitting on the couch. After I recovered, I asked him to come over to me. I thanked him for helping to take care of me and asked him where he put my glasses. He said, "I put them between these two containers so no one would step on them." He smiled and gave me a kiss. He was proud of himself...I was proud of him too.
Thank you, Jackson, for being such a brave and patient boy. You truly are a blessing from Heaven.
Saturday, January 12, 2013
"I See a Light..."
No, it's not the light at the end of the tunnel...
For those of you who have seen Finding Nemo, close your eyes and remember the deep sea angler fish. (Open them because you can't read with them closed, silly...) In the scene with the angler fish, Marlin and Dory have swam into deep water following after the mask, trying to rectify the only way they can get back to Nemo.
I have found it for those of you who need a refresher and/or have never seen Finding Nemo. (Note, the latter of you should get out more.) Skip the following clip to minute marker 1:40.
Dory and Marlin meet the Deep Sea Angler Fish
When I'm having the moments before a seizure and I'm in the trance-like stare part, it FEELS like what Marlin and Dory say...
"I see a light...over there...It's so...pretty. I'm feeling...happy....I want to touch it...oh..."
Really, I don't see a "light." But I do sense the euphoric feeling that lured Dory and Marlin to stick around the light long enough until the deep sea angler showed it's demonic appearance and scared the pee/poop out of those two little fishies. (Please note, to this day, I still am in the Haven't-Peed-Myself club. Go me!)
Just another way for you all to get a glimpse into my body and mind.
Four days and a wake-up until I have my Neuro appointment!
For those of you who have seen Finding Nemo, close your eyes and remember the deep sea angler fish. (Open them because you can't read with them closed, silly...) In the scene with the angler fish, Marlin and Dory have swam into deep water following after the mask, trying to rectify the only way they can get back to Nemo.
I have found it for those of you who need a refresher and/or have never seen Finding Nemo. (Note, the latter of you should get out more.) Skip the following clip to minute marker 1:40.
Dory and Marlin meet the Deep Sea Angler Fish
When I'm having the moments before a seizure and I'm in the trance-like stare part, it FEELS like what Marlin and Dory say...
"I see a light...over there...It's so...pretty. I'm feeling...happy....I want to touch it...oh..."
Really, I don't see a "light." But I do sense the euphoric feeling that lured Dory and Marlin to stick around the light long enough until the deep sea angler showed it's demonic appearance and scared the pee/poop out of those two little fishies. (Please note, to this day, I still am in the Haven't-Peed-Myself club. Go me!)
Just another way for you all to get a glimpse into my body and mind.
Four days and a wake-up until I have my Neuro appointment!
Friday, January 11, 2013
Walmart, Dog Poop and Supervised Baths...
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| Thought this was ironic. "Mental Case" Scatter Brainz toy... |
Yesterday wasn't quite as bad. Brent was working from, well, work AND had a meeting at church afterwards, so I set up with my sweet neighbor and her daughter to hang out with me and Jackson after school. We could call it a play date, but it was really more of a I'm afraid to be left alone for that long during my witching hour. We'll say it was a lovely meeting of friends on a beautiful high 50's afternoon, complete with a trip to the community park down the street. Wouldn't you know, I felt one coming on and signaled to her that we needed to go. (I was clench-jawed and non-communicative at that point.) I waved a goodbye to the rest of our neighborhood friends and made it about ten yards before I was laying on the ground. Lucky for me, I had enough wits about me before going to the ground that I saw dog poop and didn't roll around in it. (MEWS NEIGHBORS- PLEASE PICK UP AFTER YOUR DOGS. I DON'T WANT TO END UP WEARING THEIR CRAP!)
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| Feeling naked |
Oh, and one last thing~ I got to take a steamy bath last night. Boy, did it feel good on my sore body. But, it didn't come without being babysat. Hey, I get it. It doesn't mean I don't feel awkward about it or that I'm not going to complain about being a 31 year old adult who cannot take a swim in her tub alone.
Tuesday, January 8, 2013
That's so not right...
Last night, we were playing the board game Sorry. Jackson and I had created an alliance to "gang up on Dada." I love that Jackson's at the stage that he not only loves board games, but that we can gently poke fun with one another and still be kind-hearted about it.
At one point, I said to Jackson, "Just remember who's on your team" and we both giggled. Then, Brent said "Just remember who protects your head" or something to that effect.
Low blow, there Papa Bear. Low blow.
At one point, I said to Jackson, "Just remember who's on your team" and we both giggled. Then, Brent said "Just remember who protects your head" or something to that effect.
Low blow, there Papa Bear. Low blow.
Sunday, January 6, 2013
I HAVE to tell you this...
I have seizures.
Trust me, if I had a choice, it would be to NOT tell you. I would rather both of us go along with our lives without me having to be real or authentic with you about what's going on in my life.
It would be easier for me to simply answer "I'm fine" to your "How are you doing?" It would be even easier for me to just stay home, in bed and not have to deal with anyone.
However, I have seizures. And, I have to choose to continue living. I force myself to get out of bed everyday, not cursing God for the suffering that my family and I are living with. Instead, I try to spend time with Him each day, recognizing how these life experiences are bringing me closer to him and those that I love.
Yes, I have moments that I cannot control the violent convulsions or slamming my head on the ground; I cannot stop the socially-repulsive drooling nor the loud and obnoxious sounds that are coming out of my mouth.
Guess what? When it seems as though I'm just staring off into space and ignoring you...I'm not. If I tell you "I don't know" and cannot make a decision, that's real. I'm not TRYING to be a pain in the ass. I really cannot make a decision right then. And that inappropriate, uncontrollable laughter may be wrapped up in this as well.
No, this blog is not for attention. Neither are my episodes. I cannot control them anymore than you can control a sneeze.
Rather, I can take this opportunity to tell you about what this life God has given me right now is like. I can share with you how you can help me if I happen to have a seizure in your presence. I can give you resources to educate yourself and your children about why Miss Sara is acting the way that she is.
If you would like to know how you can help me (or someone else who is having a seizure) please watch the quick videos, linked below. They explain very succinctly what you should and should not do in the event that this uncomfortable situation happen in your presence.
Seizure First Aid
Seizure Education
Trust me, if I had a choice, it would be to NOT tell you. I would rather both of us go along with our lives without me having to be real or authentic with you about what's going on in my life.
It would be easier for me to simply answer "I'm fine" to your "How are you doing?" It would be even easier for me to just stay home, in bed and not have to deal with anyone.
However, I have seizures. And, I have to choose to continue living. I force myself to get out of bed everyday, not cursing God for the suffering that my family and I are living with. Instead, I try to spend time with Him each day, recognizing how these life experiences are bringing me closer to him and those that I love.
Yes, I have moments that I cannot control the violent convulsions or slamming my head on the ground; I cannot stop the socially-repulsive drooling nor the loud and obnoxious sounds that are coming out of my mouth.
Guess what? When it seems as though I'm just staring off into space and ignoring you...I'm not. If I tell you "I don't know" and cannot make a decision, that's real. I'm not TRYING to be a pain in the ass. I really cannot make a decision right then. And that inappropriate, uncontrollable laughter may be wrapped up in this as well.
No, this blog is not for attention. Neither are my episodes. I cannot control them anymore than you can control a sneeze.
Rather, I can take this opportunity to tell you about what this life God has given me right now is like. I can share with you how you can help me if I happen to have a seizure in your presence. I can give you resources to educate yourself and your children about why Miss Sara is acting the way that she is.
If you would like to know how you can help me (or someone else who is having a seizure) please watch the quick videos, linked below. They explain very succinctly what you should and should not do in the event that this uncomfortable situation happen in your presence.
Seizure First Aid
Seizure Education
Saturday, January 5, 2013
Parenting from the floor
My son is five (and a half). He is quite intelligent and very much an emotional feeler. After discussing the initial spasms with my doctor, she suggested that we not hide them from Jackson. She stated that he would be more fearful if we were secretive.
So, besides the first two or three episodes of my hand and arm being stuck in "the claw," we didn't try to pretend like nothing was wrong. I'd simply say, "Oh, Jackson...Mommy's hand is being silly again." Or, when Jackson asked what was wrong with Mama, Brent would tell him, "Mama's having a muscle spasm again."
I believe he is not scared because we have been honest with him. So, as the muscle spasms escalated to tip-toe walking and then the convulsions with grunting, he has not been fearful. He has laughed, calling me a "zombie dying." He has mimicked my sounds. He has lovingly rubbed my back and kissed my cheek and told me "It will be over soon, Mama."
And, he has also said "I'm tired of waiting for you, Mama" when I was having the beginning of a seizure in the car. He was being inpatient because Brent was tending to me and not letting him out of the car. However, I was aware of what he said and it was surely disrespectful. Tired, scared, impatient...are no excuses for disrespecting his Mama.
When Brent was trying to get me into the house, I muttered through gritted teeth a few choice words about Jackson's disrespect. Most of which, I'm pretty sure sounded like the teacher from Peanuts to Brent.
After my seizure passed and I was recovering, I called Jackson downstairs using his full name. "What did I do, Mama?" he asked, slowly coming down the stairs. "What's wrong, Mama?"
He sat about two feet away from me. I said "Come here, Jackson." He sat, hovering over my head. I told him to look me in the eye and he put his eyes right up against my face. Using my best I-Just-Seized-But-I'm-Still-Your-Mama voice, I told him to lay down next to me. He obeyed. I told him to look me in the eyes. So, there he was, face on the carpet about six inches away from me.
"Jackson, do you know I can hear everything when I'm having an episode?"
"Yes, Mama."
"I heard what you said in the car."
"What did I say?" he asked.
I said, "You said 'Mama, I'm sick of waiting for you.'"
"No," he said, "I said 'I'm tired of waiting for you, Mama.'"
A stern talking to came next, with my son's face on the carpet right next to mine. Although that was my first time parenting post-seizure, I'm sure it will not be the last time I get to show my Alpha-female to my little bundle of independence from the floor.
So, besides the first two or three episodes of my hand and arm being stuck in "the claw," we didn't try to pretend like nothing was wrong. I'd simply say, "Oh, Jackson...Mommy's hand is being silly again." Or, when Jackson asked what was wrong with Mama, Brent would tell him, "Mama's having a muscle spasm again."
I believe he is not scared because we have been honest with him. So, as the muscle spasms escalated to tip-toe walking and then the convulsions with grunting, he has not been fearful. He has laughed, calling me a "zombie dying." He has mimicked my sounds. He has lovingly rubbed my back and kissed my cheek and told me "It will be over soon, Mama."
And, he has also said "I'm tired of waiting for you, Mama" when I was having the beginning of a seizure in the car. He was being inpatient because Brent was tending to me and not letting him out of the car. However, I was aware of what he said and it was surely disrespectful. Tired, scared, impatient...are no excuses for disrespecting his Mama.
When Brent was trying to get me into the house, I muttered through gritted teeth a few choice words about Jackson's disrespect. Most of which, I'm pretty sure sounded like the teacher from Peanuts to Brent.
After my seizure passed and I was recovering, I called Jackson downstairs using his full name. "What did I do, Mama?" he asked, slowly coming down the stairs. "What's wrong, Mama?"
He sat about two feet away from me. I said "Come here, Jackson." He sat, hovering over my head. I told him to look me in the eye and he put his eyes right up against my face. Using my best I-Just-Seized-But-I'm-Still-Your-Mama voice, I told him to lay down next to me. He obeyed. I told him to look me in the eyes. So, there he was, face on the carpet about six inches away from me.
"Jackson, do you know I can hear everything when I'm having an episode?"
"Yes, Mama."
"I heard what you said in the car."
"What did I say?" he asked.
I said, "You said 'Mama, I'm sick of waiting for you.'"
"No," he said, "I said 'I'm tired of waiting for you, Mama.'"
A stern talking to came next, with my son's face on the carpet right next to mine. Although that was my first time parenting post-seizure, I'm sure it will not be the last time I get to show my Alpha-female to my little bundle of independence from the floor.
Husband Fail
So, Brent and I were just having a lovely birthday dinner out. We were talking about the severity of my seizures the past two days. Specifically, there's a lot of head banging going on. Nope, not like "Smells like Teen Spirit," but yet more of a skull vs. floor death match.
Wait for it...
Wait for it...
Brent says, "Have you thought of anything we could do if I'm not there? How about a helmet?"
What-awhaaaat? Did he just go there?
To continue digging his hole he says "REI has some really cool ones these days."
Yup, happy birthday to me.
Wait for it...
Wait for it...
Brent says, "Have you thought of anything we could do if I'm not there? How about a helmet?"
What-awhaaaat? Did he just go there?
To continue digging his hole he says "REI has some really cool ones these days."
Yup, happy birthday to me.
Thursday, January 3, 2013
Well now, that's awkward...
Wanna know what's awkward? Asking people if they're comfortable with me coming to their house, being around their kids, being out in public.
It's bad enough that I do not feel comfortable taking a shower long enough to shave my legs without Brent in earshot. And, hahaha...forget about taking a bath. Could you imagine the dramatic outcome of that? I'm not looking to pull a Whitney minus the crack...and alcohol...and news team coverage. (Too soon?)
But, I felt obligated to go to a meeting at Jackson's school to find out if I'm still able to volunteer there without being considered a liability.
I signed up to go to a scrapbooking crop at a friend's house next week, with the caveat of "this is what's happening and if you're not comfortable, I fully understand." The host is so sweet in asking simply what my seizures look like and what to do in the event one happens.
I'm nervous to go to church, of all places, because I've had three seizures there...one of which was during the benediction. "May The Lord...(eeehhhh ...eeeeee... gagagagaaa) ...keep you and bless you...(ggggggggaaaaa)...all of your days through." Supposedly, only our close friends in the pews around us could hear me. In my head, I was thinking "Sweet Jesus...ain't nobody got time for that!" (YouTube Sweet Brown Tosh.0 for the reference.)
And you know, I'm lucky I'm Presbyterian. There are extremist churches that would love to lay hands upon me to defeat the devil that is obviously plaguing my body. (Ahem...it's my brain waves; not a sign from God that I am immoral or sinful. Although...)
It's bad enough that I do not feel comfortable taking a shower long enough to shave my legs without Brent in earshot. And, hahaha...forget about taking a bath. Could you imagine the dramatic outcome of that? I'm not looking to pull a Whitney minus the crack...and alcohol...and news team coverage. (Too soon?)
But, I felt obligated to go to a meeting at Jackson's school to find out if I'm still able to volunteer there without being considered a liability.
I signed up to go to a scrapbooking crop at a friend's house next week, with the caveat of "this is what's happening and if you're not comfortable, I fully understand." The host is so sweet in asking simply what my seizures look like and what to do in the event one happens.
I'm nervous to go to church, of all places, because I've had three seizures there...one of which was during the benediction. "May The Lord...(eeehhhh ...eeeeee... gagagagaaa) ...keep you and bless you...(ggggggggaaaaa)...all of your days through." Supposedly, only our close friends in the pews around us could hear me. In my head, I was thinking "Sweet Jesus...ain't nobody got time for that!" (YouTube Sweet Brown Tosh.0 for the reference.)
And you know, I'm lucky I'm Presbyterian. There are extremist churches that would love to lay hands upon me to defeat the devil that is obviously plaguing my body. (Ahem...it's my brain waves; not a sign from God that I am immoral or sinful. Although...)
The Inside Scoop
Okay, so here's the deal...I cannot stop it, but I'm aware. (Remember that if you happen to be around someone like me with seizures. Not the time to disclose any top secret information- they'll remember!!!)
I'm on the floor of my living room. I can see the carpet. I can see my shed hair and a random toenail. Gross, right? My brain is saying, "Sara, when this is done, remember to vacuum tomorrow."
The one night I was taken to the ER via ambulance, the beginning of the battering my body took that night from the non-stop seizures. I ended up on my knees, with one arm sticking out and one arm plastered to my chest. The repetitive movements that claimed me just then included me bouncing on my knees. Yes, that's right. I was a rock star, giving it my best air guitar...I found this incredibly amusing in my thoughts. Apparently, I was the only one.
The medics on the ambulance that I told I "was being a rock star" between events probably thought I was crazy. I'm not crazy. I'm having seizures that I'm aware of...I think and know where I am when it's happening. I just cannot control my movements or sounds or communicate. But, my thoughts rival someecards on a routine basis.
Point and case, medics, you're on notice. I heard what you were saying about my "episodes" and you calling them "agitated-delirium something or other" due to my PTSD. You dork face! You're not a doctor. Don't assume that just because I'm in treatment, I'm automatically a psych case. (We all know what assuming does, guys.)
And, Jackson, NO, mommy is not a zombie dying. I heard that too. If it happens again, you're in trouble. However, when you're mimicking my tics like a broken record, it is amusing to me. (Apparently, not to Dada, so you may want to cut that out too.)
Kay and Tim, I heard you praying. That was incredibly soothing. Thank you for your support and bravery. I'm sure that it was a scary moment for you.
My sweet Brenny, thank you for being my protector. You've probably saved my head from a few more concussions we could add to the list. If we could only figure out how to tackle the rug burn situation. (And, readers: get your minds out of the gutter...rug burns from the convulsions on the floor, not from any recreational activities with my husband. It's not that type of blog, people!)
Oh, and one of the kids at church asked if it hurts. I'm sure that'd be something you'd all be wondering too. It hasn't hurt. Exhausting, yes. Embarrassing in public, yes. I'm sure if I were to fall down the stairs or bust my face on a piece of furniture it would hurt. Thus far, the only time it's hurt was when I hit my head on the corner of the wall in my closet. Eh, I've had worse head injuries, which were probably what has gotten me into this whole mess to begin with.
I'm on the floor of my living room. I can see the carpet. I can see my shed hair and a random toenail. Gross, right? My brain is saying, "Sara, when this is done, remember to vacuum tomorrow."
The one night I was taken to the ER via ambulance, the beginning of the battering my body took that night from the non-stop seizures. I ended up on my knees, with one arm sticking out and one arm plastered to my chest. The repetitive movements that claimed me just then included me bouncing on my knees. Yes, that's right. I was a rock star, giving it my best air guitar...I found this incredibly amusing in my thoughts. Apparently, I was the only one.
The medics on the ambulance that I told I "was being a rock star" between events probably thought I was crazy. I'm not crazy. I'm having seizures that I'm aware of...I think and know where I am when it's happening. I just cannot control my movements or sounds or communicate. But, my thoughts rival someecards on a routine basis.
Point and case, medics, you're on notice. I heard what you were saying about my "episodes" and you calling them "agitated-delirium something or other" due to my PTSD. You dork face! You're not a doctor. Don't assume that just because I'm in treatment, I'm automatically a psych case. (We all know what assuming does, guys.)
And, Jackson, NO, mommy is not a zombie dying. I heard that too. If it happens again, you're in trouble. However, when you're mimicking my tics like a broken record, it is amusing to me. (Apparently, not to Dada, so you may want to cut that out too.)
Kay and Tim, I heard you praying. That was incredibly soothing. Thank you for your support and bravery. I'm sure that it was a scary moment for you.
My sweet Brenny, thank you for being my protector. You've probably saved my head from a few more concussions we could add to the list. If we could only figure out how to tackle the rug burn situation. (And, readers: get your minds out of the gutter...rug burns from the convulsions on the floor, not from any recreational activities with my husband. It's not that type of blog, people!)
Oh, and one of the kids at church asked if it hurts. I'm sure that'd be something you'd all be wondering too. It hasn't hurt. Exhausting, yes. Embarrassing in public, yes. I'm sure if I were to fall down the stairs or bust my face on a piece of furniture it would hurt. Thus far, the only time it's hurt was when I hit my head on the corner of the wall in my closet. Eh, I've had worse head injuries, which were probably what has gotten me into this whole mess to begin with.
I Shaved my Legs for This?
Enter EMG testing...
Neuro appointment today. Don't ask me what an EMG is. Google needs to stay in business, so I'll send some love their way on this one.
I had to shower in prep and not put lotion on. It can apparently screw with the tests. I shaved my legs to spare the doctor.
Loose fitting shorts and shirt were required so they have access to the muscles. I changed there, seeing how it was damned cold out this morning. (For all my New England peeps- it was early spring...)
This electric mid-twenty first torture device was in a tiny little room. I got to change and lay down while the tech did the preliminary studies. There were two leads put onto a couple of places on my hand and then I was shocked with this double-pronged wand.
The electrical shock was just enough to be uncomfortable, like walking on carps with socks on. But, each time I was zapped, the impulse caused different parts of my hand to move and contract.
The Doc poked his head in and said he'd be a moment or two, so I decided to take this opportunity to use the restroom. Remember what the dress code for the test was? Well, add a good pair of cowgirl boots and this is what you get.
The doctor told me I had "quite the look," to which I replied "You know it's hot!" He just laughed. Spreading the joy always. Yes, I sure did walk myself down two corridors in this getup to potty. Shameless.
Then, the Doc came in for the big show. I reminded him of my latex allergy and he found new gloves. Then, I asked him if it would hurt. He told me it wouldn't be like doing something super fun (I replied, "like going to Disney World?") and then said it would "suck." (I should have asked him if that was a technical term.) "Pin pricks" is what he referred the needle insertion. (TWSS?!?)
So, it really was merely uncomfortable. Either I have a ridiculously high pain tolerance or the internet people I read about who needed pain medicines afterwards were just wusses.
Oh, and I joked about my awfully ashy legs with the Doc as well. I told him it was all his fault, since I couldn't put lotion on.
I asked his permission for Brent to take the picture of my arm. He asked if it was for "my Facebook or something." I said it would make great blog material...and that I'm totally making fun of myself on the grand-scale of the internet. The newest friend I've made in this walk, errr, prone-laden experience I'm having gave a huge compliment. He said that I have "a great attitude in the face of a really difficult situation."
On to the good news: 1) He ruled out ALS with confidence. 2) He was able to get my appointment for mid-February changed to mid-January. (See making friends along the way has its perks.)
Bad news: We still don't have an explanation.
Bonus: I got to plaster one of the least flattering pictures of myself on the internet and tell you all about my experience, with smooth, shaved legs.
Neuro appointment today. Don't ask me what an EMG is. Google needs to stay in business, so I'll send some love their way on this one.
I had to shower in prep and not put lotion on. It can apparently screw with the tests. I shaved my legs to spare the doctor.
Loose fitting shorts and shirt were required so they have access to the muscles. I changed there, seeing how it was damned cold out this morning. (For all my New England peeps- it was early spring...)This electric mid-twenty first torture device was in a tiny little room. I got to change and lay down while the tech did the preliminary studies. There were two leads put onto a couple of places on my hand and then I was shocked with this double-pronged wand.
The electrical shock was just enough to be uncomfortable, like walking on carps with socks on. But, each time I was zapped, the impulse caused different parts of my hand to move and contract.
The Doc poked his head in and said he'd be a moment or two, so I decided to take this opportunity to use the restroom. Remember what the dress code for the test was? Well, add a good pair of cowgirl boots and this is what you get.
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| This one's for you, MattBec! |
The doctor told me I had "quite the look," to which I replied "You know it's hot!" He just laughed. Spreading the joy always. Yes, I sure did walk myself down two corridors in this getup to potty. Shameless.
Then, the Doc came in for the big show. I reminded him of my latex allergy and he found new gloves. Then, I asked him if it would hurt. He told me it wouldn't be like doing something super fun (I replied, "like going to Disney World?") and then said it would "suck." (I should have asked him if that was a technical term.) "Pin pricks" is what he referred the needle insertion. (TWSS?!?)
So, it really was merely uncomfortable. Either I have a ridiculously high pain tolerance or the internet people I read about who needed pain medicines afterwards were just wusses.
 |
I asked his permission for Brent to take the picture of my arm. He asked if it was for "my Facebook or something." I said it would make great blog material...and that I'm totally making fun of myself on the grand-scale of the internet. The newest friend I've made in this walk, errr, prone-laden experience I'm having gave a huge compliment. He said that I have "a great attitude in the face of a really difficult situation."
On to the good news: 1) He ruled out ALS with confidence. 2) He was able to get my appointment for mid-February changed to mid-January. (See making friends along the way has its perks.)
Bad news: We still don't have an explanation.
Bonus: I got to plaster one of the least flattering pictures of myself on the internet and tell you all about my experience, with smooth, shaved legs.
Wednesday, January 2, 2013
Sara: Caged Animal that Cleans
Thus begins Day One of my captivity. (Brent has returned to work and Jackson to school.) I keep trying to remember there is a lesson here...perhaps God is trying to remind me to slow down? Be present in the moment? Live each moment to the fullest?
All that may be true...and I have so many things I would love to be doing right now in my home. Specifically, scrapbooking or reading one of fifteen books that are in the queue. However, I have spent the past two hours cleaning our loft. (Read: Double-edged sword...I'll feel better that it's cleaner, but I will not feel relaxed because it's not done AND I have worked my tail off.)
What would I be doing if I weren't a prisoner in my own home? Perhaps cleaning the resource room at church that I have left in shams because the day I intended on tackling it I had two all-out seizures and was drained. Perhaps I'd be at Jackson's school, volunteering in his classroom or the library (two of my favorite places to be in the world...). Yet, I'm afraid of being a burden on Jackson's teachers AND scaring the crap out of all of Jackson's friends. (I envision them all running amok, screaming "Mrs. Y. is a monster! Mrs. Y. is a zombie!" Jackson would be mortified. The only way it could be worse is if I peed myself for the first time there. Gosh, could you imagine?)
Achk, let's be honest here. I'd probably be out, spending money at Target or the commissary. Note, these are necessary evils: groceries and other household items. However, I always end up spending more than what is truly needed or required. Hey! Who would've thought that a medical condition rendering me captive would end up SAVING us money? Bonus!
Furthermore, please know, I have received MANY gracious offers from very good friends to have the capability to leave the house and have rides, etc. However, it's a bizarre feeling to lose your independence like this. Damned brain...
All that may be true...and I have so many things I would love to be doing right now in my home. Specifically, scrapbooking or reading one of fifteen books that are in the queue. However, I have spent the past two hours cleaning our loft. (Read: Double-edged sword...I'll feel better that it's cleaner, but I will not feel relaxed because it's not done AND I have worked my tail off.)
What would I be doing if I weren't a prisoner in my own home? Perhaps cleaning the resource room at church that I have left in shams because the day I intended on tackling it I had two all-out seizures and was drained. Perhaps I'd be at Jackson's school, volunteering in his classroom or the library (two of my favorite places to be in the world...). Yet, I'm afraid of being a burden on Jackson's teachers AND scaring the crap out of all of Jackson's friends. (I envision them all running amok, screaming "Mrs. Y. is a monster! Mrs. Y. is a zombie!" Jackson would be mortified. The only way it could be worse is if I peed myself for the first time there. Gosh, could you imagine?)
Achk, let's be honest here. I'd probably be out, spending money at Target or the commissary. Note, these are necessary evils: groceries and other household items. However, I always end up spending more than what is truly needed or required. Hey! Who would've thought that a medical condition rendering me captive would end up SAVING us money? Bonus!
Furthermore, please know, I have received MANY gracious offers from very good friends to have the capability to leave the house and have rides, etc. However, it's a bizarre feeling to lose your independence like this. Damned brain...
Tuesday, January 1, 2013
2013 Please!
2012...don't let the door hit you on the way out. No, seriously. You were a real pain in the ass. I'm glad you're gone. Yeah, I turned 30, but it wasn't until recently that I decided I needed to cut you...
The past two months, I have had the pleasure of being the center of multiple social faux-pas, none of which I had any control over. For instance, at Christmas dinner with my husband's parents, my hand got stuck for a few minutes in "the claw," relaxed, and found itself more comfortable flipping the bird to my table of in-laws. It looked sort of like this:
The past two months, I have had the pleasure of being the center of multiple social faux-pas, none of which I had any control over. For instance, at Christmas dinner with my husband's parents, my hand got stuck for a few minutes in "the claw," relaxed, and found itself more comfortable flipping the bird to my table of in-laws. It looked sort of like this:
Now, of course, I did what any sensible person would do...try to hide it. But you can only hide your dominate being stuck in such a precarious position for so long. Lucky for me, everyone thought it was incredibly funny. So no harm, no foul.
It all started with my hand getting stuck with my pointer finger and thumb struggling to work together. (And there I was, cheering them on "C'mon guys, you can do it!") Numbness in my right arm that wouldn't go away. The dropsies. I did what the docs told me...had x-rays and was worked up for Rheumatoid Arthritis. No joy. Lyme Disease? Nope. Lupus? Always possible.
Then, there the tip-toe walking started. I literally couldn't put my heels down as I was walking. This would only last a few minutes, same as my hand getting stuck. Now, I just look ridiculous! But, I had my labs drawn, visited my doc a few more times and she gives me a referral to Neuro. The hope is that this isn't MS or ALS (the latter of which is in my family). The earliest appointment was five weeks. Seriously? FIVE WEEKS???
In the meantime, I had a CT Scan and an MRI, both of which came back clean as a whistle. (Phew! But, um...where's the explanation for my odd symptoms?)
So, I did what any concerned and embarrassed 30 year old mother and wife would do. I stalked their asses from the time my Neuro referral was approved. No, I didn't sit outside the office, drinking coffee and peeing into the empty container later. I called them. Everyday. I asked to be put on their cancellation list. I still called. (I was totally that annoying patient that has absolutely no patience but is really nice all at the same time.)
THEN, I started having episodes of staring off into space, being non-communicative and violently shaking. Okay. We all know what the medical term for this is, but we won't talk about that...at least until I have been to the ER three days before Christmas. Because if anyone in the medical field so much as utters that word, driving is out.
I got a call one week in that there was a cancellation at Neuro...I was in! I made the arrangements for my husband to meet me there. I went to the hospital to get my medical records. Sitting there, I had "the claw" happen...okay, a little awkward. Then, my face looked like this:
Pinched-face just isn't appealing...it's not my thing. I texted a picture to my husband and he instructed me to go to the ER. He's thinking I'm having a stroke. I go to the ER and cannot speak to anyone because what you can't see is that my jaw is locked shut as well as this beautiful lip thing my mouth was doing. Drooling was evident. So, I start scribbling a note to the nurse that came to the front desk to see me. I call my husband so he can explain what's wrong. Then, as sudden as it started, it stopped. I was able to speak and tell them what was wrong. The nurse sent me on my way, saying go to my Neuro appointment.
Upon getting to Neuro, I had two more instances of tip-toe walking and jaw lock with that pleasant look that makes me want to laugh every time I see it. But, control, Sara...you must have control of yourself. Neuro worked me up, asked me all sorts of questions...yes, I have been losing words in the middle of speaking, tingling in my extremities, extreme fatigue. Ouch! Those spots on my shoulders hurt, as do the ones in my hips and knees. He ordered a few tests.
Lucky for me, they were able to schedule these tests two days later and I left the office looking like this:
Doesn't look so bad from the front, but from the back, you would see I had twenty-something wires cemented to my skull. After having the sleep-deprived EEG and being hooked up to my 24-hour monitoring EEG, I was hungry!!! So, I did the rational thing...had a lovely lunch out with my husband at our local 5 Guys. It was delicious, complete with stares and mouths agape. I know, I looked like Frankenstein's bride whom had just been run over by a bus. But, I was a hungry lady. Gotta do what you gotta do. Sorry, people eating at 5 Guys in Springfield that day. You just had to suffer uncomfortably while it took me fifteen minutes to eat my lunch.
Now, we wait...about two weeks for the test results. Oh, did I mention we've gone from "muscle spasms with posturing" as the Neuro has called them to full blown I'm-Lucky-I-Haven't-Pissed-Myself-Yet convulsions. They usually only last a few minutes. I hear everyone around me. I just can't talk, unless you consider random tics and guttural noises communicative. Then, maybe I'll just digress to cave woman status. My body randomly shakes, twists and convulses. I am out of control.
So, now, I live my life with the occasional interruption of hanging out on the floor. I'm still Sara. I'm in here. I just look like "a zombie dying" as my son so eloquently stated during one of my "muscle spasms" in the car.
...Oh, and don't worry. I gave up driving about a week before I was officially told not to when I was diagnosed with having "seizures" in the hospital. Perhaps, tomorrow I'll tell you about that story. But for right now, all I can say is Welcome 2013!
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