As time has marched on since her passing, my conversations with my mother center less and less around Ansley. It is a normal progression, I suppose, and a healthy one at that. However, my bed/sofa ridden times as they have been over the past month, have surfaced memories that had been filed away. They are the ones of struggles and challenges and helplessness.
For 3 years she lived largely in the bed. I can see her -fogged out of her mind in attempts to cover her pain. Her mouth slightly parted and eyes a little droopy. She would smile a little half smile. She was very child-like.
Three years...and I have had only 4 weeks. In no way can I comprehend what her months and years felt like. Each day for me has seemed like a year. I won't venture to guess how they felt to her. I am not forced to contemplate the end of my life as she did each day. All of the variables we had with Ansley - the attempt to control pain, not be over medicated, the push to see doctors, the unknown diagnosis, the constant shuffling of schedules, kid pick-ups, household chores, and my own sense of guilt are so uncomfortably familiar...it just heaps on the emotional pain along with physical. It is a new level of understanding for me and it is very unsettling. This new place of understanding brings new compassion, compassion I wish I could have shown her. The fact that I am at a new level of empathy racks me with guilt - did I shower her with true sympathy and love while she was here?
This has also brought a particularly cruel sadness to my mother. She would never voice that, but I have seen it and felt it. After my failed epidural procedure last Wednesday, the nurse pushed me in a wheelchair to my waiting mother and her car. Wheeled up to the car door, I made the quick move to the front seat which was reclined all the way back. My mom helped get the door closed and then got into the driver's seat. As we pulled away, she said, "Seeing you wheeled out brought back a flood of memories of me picking up Ansley so many times." At that, she burst into tears and sobs. It hurt me.
My mom has picked up the ball with my kids and their activities. As school is winding down there are the usual parties, field trips, etc. Lily's last day was yesterday, Thursday. The parents were to come for the final party which was followed by a little performance of her music class. My pain level would not allow me to handle what would amount to 2.5 hours of sitting and standing, so my mom agreed to be my stand-in. After the event, mom brought Lily home. She sat down in the kitchen to tell me all about it. I could see the entire day had brought back memories of being in that same role for Graylyn. Once when Ansley was still living and then last year at Graylyn's graduation when Ansley was gone.
She is once again thrust into the role of caregiver, provider, limousine driver, launderer, dishwasher, errand runner, etc. I know in my heart that it is one she does willingly and happily, but I know where this has taken her and I am sad.
Friday, May 23, 2008
Wednesday, May 21, 2008
It's been a while, my friends
Most of you who frequent my blog received an email telling you about my scheduled surgery on Wednesday. As I wrote in the email, I believe I have been vindicated - there was a real reason for the torturous pain I have been in. Most people are very leery about back surgery, but they have made a lot of improvements. Relief is prayerfully close!!!
On a very, very bizarre note and what can only be described as a miracle - bizarre, but a miracle...the person who I really owe the biggest thanks to for getting me into Dr. Neave (top dog neurosurgeon in HP), the one who ended up going to bat for me, who came through on a promised phone call and had me in the NEXT day instead of June 18th...MY NEW BFF...
MR. BIG BRAINS!!! Yes, can you believe it? The PA who was such a jerk to me came through with compassion, care and yes, honesty! Do I feel guilty about what I wrote about him previously - no. It was a truthful depiction of my time with him. I do believe because I joked with him about that comment, showed honesty and a true desire to get well and work hard, we had a little conncetion. Who knows.
What did I learn from this encounter? We all have bad days. We all get frustrated and worn out. But the effect of how we chose to react can create a very inaccurate portrayal of who we really are. Clearly Mr. Big Brains in his core is not the person I encountered that first appointment. I wonder how many times I have allowed my irritation to be vomited on those around me, particularly strangers who for no fault of their own just happened to be at the wrong place at the wrong time (or the "right" time in order to teach me a lesson). What an inaccurate portrayal of me they must have. It sorta hurts to think about it.
I actually wrote the above blog on Wednesday, but hadn't proofed it (I use that term loosely). I received the "Link" from church just now and Bill (the new-ish pastor) wrote my intentions above much more succinctly. Here it is:
Whatever this day - or any day, for that matter - brings you, God has designed that the unique set of circumstances that puts you either in a moment of exhilarating success, abysmal failure or somewhere in-between makes you a momentary "expert." Except for the reality that the Holy Spirit is with you, no one will have been exactly where you are in that experience. So, what will you do with the moment and its discoveries?
On a very, very bizarre note and what can only be described as a miracle - bizarre, but a miracle...the person who I really owe the biggest thanks to for getting me into Dr. Neave (top dog neurosurgeon in HP), the one who ended up going to bat for me, who came through on a promised phone call and had me in the NEXT day instead of June 18th...MY NEW BFF...
MR. BIG BRAINS!!! Yes, can you believe it? The PA who was such a jerk to me came through with compassion, care and yes, honesty! Do I feel guilty about what I wrote about him previously - no. It was a truthful depiction of my time with him. I do believe because I joked with him about that comment, showed honesty and a true desire to get well and work hard, we had a little conncetion. Who knows.
What did I learn from this encounter? We all have bad days. We all get frustrated and worn out. But the effect of how we chose to react can create a very inaccurate portrayal of who we really are. Clearly Mr. Big Brains in his core is not the person I encountered that first appointment. I wonder how many times I have allowed my irritation to be vomited on those around me, particularly strangers who for no fault of their own just happened to be at the wrong place at the wrong time (or the "right" time in order to teach me a lesson). What an inaccurate portrayal of me they must have. It sorta hurts to think about it.
I actually wrote the above blog on Wednesday, but hadn't proofed it (I use that term loosely). I received the "Link" from church just now and Bill (the new-ish pastor) wrote my intentions above much more succinctly. Here it is:
Whatever this day - or any day, for that matter - brings you, God has designed that the unique set of circumstances that puts you either in a moment of exhilarating success, abysmal failure or somewhere in-between makes you a momentary "expert." Except for the reality that the Holy Spirit is with you, no one will have been exactly where you are in that experience. So, what will you do with the moment and its discoveries?
Saturday, May 17, 2008
Prayers
I have a lot of thoughts about blog topics this week. Unfortunately, I can't get them down on the computer. I am on my knees (literally) typing this at my computer in the basement, thus limiting the amount of time I can type. So - I had the epidural on Wednesday. Most, most, most disappointingly, I have had no change in my pain level. If it is possible, I think the pain has actually gotten worse. That may be because I stopped taking pain meds for several reasons. One) I felt over medicated and 2) I had either a reaction to coming off Prednisone or caught some sort of virus that basically made me feel very hung-over for the past 5 days and 3) I wanted to see the true effects of the epidural. I was told that I could resume activities the NEXT day so I hoped off in the car on Friday to take the kids to school. I was smart enough to take Jay with me which was good because I wouldn't have made it home. It took at good 45 minutes upon returning home to get the pain under control. I will call the doc on Monday to see about getting another shot. As I think this is standard protocol, but am not sure. I cannot get into therapy until the 29th, but am going to call Monday to see if there isn't another location I can visit.
To add - I haven't been blogging because the laptop died - an abrupt and painful death. Jay thinks he will have it repaired on Wednesday - at least I will have contact with the outside world.
There is a small part of me that is very fearful that I will never get rid of this pain. It is the irrational side, I know, and lack of faith in God. Prayers would be greatly appreciated in this area as well as for Jay. He is hanging on by a thread. He is my hero.
To add - I haven't been blogging because the laptop died - an abrupt and painful death. Jay thinks he will have it repaired on Wednesday - at least I will have contact with the outside world.
There is a small part of me that is very fearful that I will never get rid of this pain. It is the irrational side, I know, and lack of faith in God. Prayers would be greatly appreciated in this area as well as for Jay. He is hanging on by a thread. He is my hero.
Monday, May 12, 2008
Big brains
I got "worked" into the neurosurgeon's office today. For clarification, I saw one of the P.A.s. The following statements/questions made by the P.A. will probably give you an indication of my high opinion of him:
1. So, you are who had to be worked in between my two brain tumor cases?
2. Yeah, after I had my epideral injection, I passed my black belt test in karate later that day.
3. Epiduaral injections come in sets of three - count them - 1, 2, 3
4. Assuming you can maintain the weight you are currently as you get older...
5. How can you watch three kids while taking oxycodone?
6. Yeah, I have had husbands call me up and ask me if I can get their wives on something other than prednisone.
Looks like I am going to be forced to get the epidural injection which may or may not work - not work at all, work for 5 days or like for my illustrious P.A., work for a year. After which I may get another one (at some $1900 a pop with our fabu insurance) or then be required to have surgery. Is that clear for you? It wasn't for me.
I know, I have been quite the crab the past couple of weeks - my posts reflect it and that stinks. Pain, narcotics, steriods and stress will do that to you. My post have not been very fun to read and I am sorry. I need to get a clear head and get back on track - in the God zone.
1. So, you are who had to be worked in between my two brain tumor cases?
2. Yeah, after I had my epideral injection, I passed my black belt test in karate later that day.
3. Epiduaral injections come in sets of three - count them - 1, 2, 3
4. Assuming you can maintain the weight you are currently as you get older...
5. How can you watch three kids while taking oxycodone?
6. Yeah, I have had husbands call me up and ask me if I can get their wives on something other than prednisone.
Looks like I am going to be forced to get the epidural injection which may or may not work - not work at all, work for 5 days or like for my illustrious P.A., work for a year. After which I may get another one (at some $1900 a pop with our fabu insurance) or then be required to have surgery. Is that clear for you? It wasn't for me.
I know, I have been quite the crab the past couple of weeks - my posts reflect it and that stinks. Pain, narcotics, steriods and stress will do that to you. My post have not been very fun to read and I am sorry. I need to get a clear head and get back on track - in the God zone.
Monday, May 12, 2008
Angela and Jennifer - you disappoint me. Second grade. Mrs. Sheffield's class. I actually saw her getting her mail the other day. She still lives on Chestnut - and she looked exactly the same. How can that be? I mean, it has been 30 years!
Popcorn
Pop, pop, popSays the popcorn in the pan.
Pop, pop, popYou may catch me if you can.
Pop, pop, popAs they scamper across the heat.
Pop, pop, popThey are very good to eat!
Pop, pop, popGoes the popcorn in the pan
Pop pop popTry to catch me if you can
Pop pop popGo my kernels bright and yellow
Pop pop popI'm a happy little fellow
pop pop pop pop pop pop pop
Popcorn
Pop, pop, popSays the popcorn in the pan.
Pop, pop, popYou may catch me if you can.
Pop, pop, popAs they scamper across the heat.
Pop, pop, popThey are very good to eat!
Pop, pop, popGoes the popcorn in the pan
Pop pop popTry to catch me if you can
Pop pop popGo my kernels bright and yellow
Pop pop popI'm a happy little fellow
pop pop pop pop pop pop pop
Friday, May 09, 2008
Pop, pop, pop goes the popcorn in the pan...
Anyone care to guess where that line comes from? I know only TWO readers of my blog who can probably name that line and when it was introduced to my brain. Will one of them dare come out of hiding and comment?
This afternoon, I came out of my bedroom to this jumbled up sound:
pa-pa-pa-pa-pa-pa-POP combined with lots of giggles and laughter. I walked into the kitchen to see my three children jumping around on 2x4 sheets of bubble wrap - all courtesy of the shipping department (i.e. Jay in our garage) of RaRa Telecom Supply. How much fun they were having with something so simple. I couldn't resist either and I walked over and did a quick jump. I know, what was I thinking with my back. Oh well, it was fun while the one jump lasted!
Jay decided to load up the kids tonight for a quick trip to Family Video. The kids had already gone to car, Jay said goodbye to me (or rather goodnight because I had just taken my nighttime meds) and I settled in for some rarely heard in our house silence. Just a few seconds later, I heard the front door squeak open and crying quickly filled the house again. Jay came in with Lily and said, "Lily peed in her pants and lied about it to me. She told me it was water. She doesn't get to go with us." Boy, she was really upset. But, it was a just punishment. It wasn't a complete pee - just the, "I waited a little too long and dribbled before I got to the potty" pee. We all know what I am talking about. But the smell was unmistakable. I have to give her some props for coming up with such a creative and yet plausible lie - water. So, Jay helped me get her into a pull-up (she still wears them at night) and I sent her to her bed to "think about it." A multitude of sobs, many pitifully said sorry's and enough crocodile tears to last the rest of the month went by and I told her she could come downstairs, but had to bring a book with her. She walked into my room with the BIGGEST pouty bottom lip. I think I could have used it as my nightstand. Seriously, I had to turn away because I couldn't contain my smile or laughter. It was the most pitiful little pout and one that I recognized in a few of my 3-4 year-old pictures. I got my obligatory "I am sorry Mommy, I will tell the truth, I won't pee-pee in my pants" acknowledgement. She hoped into the bed and we read Chicka Chicka Boom Boom - her new favorite little story.
This brings me to another point. We have this great book called, "2oth Century Children's American Classics." Actually, I shouldn't put that into quotes as I am not sure that is the correct title. Ordered it from Amazon and it is a fantastic collection of all the greatest children's books. Even Ethan will still pull it from the shelf. It has Amelia Bedelia, Curious George, Madeline, some Golden Books, Francis, even Goodnight Moon - all the great books from our generation as well as new ones like Chicka Chicka Boom Boom. It is a great gift idea - although now that I think about it, I have never given it as a gift. Probably because I am usually don't plan far enough ahead to order it, or even more accurately leave my house early to run by Target (buying tissue and a bag too) to grab something quick or a gift card on the way to the party. Sound familiar? Even though no one took me up on my last attempt to get comments, I will offer this question - what have been your favorite books to read to your kids, what have been their favorites (read obsession), or what did you love as a child?
On the back front - get it - update on the back? Jay got on the horn yesterday and begged the Neurologist to see me. They worked me in that day - he could sell reading glasses to a blind man. This was an appointment originally scheduled for the 13th. The verdict is that I need to get into the neurosurgeon sooner than the 22nd. They also upped my pain meds - whoo hoo and added in a med for nerve pain. I have lost the reflex in the bottom of my right heel and won't get it back. It is not a big deal, according to this doc as I don't really need it anyway. O - kay. A little strange, but, ok. I saw the MRI - they said it was "acute", "that I really know how to do it right", "a pretty nasty situation." There is disc fragment pressing on the S1 root which will need to be removed.
They called this morning to tell me they were unsuccessful in getting me in the neurosurgeon's any sooner than the 22nd. HOWEVER, the nurse I saw called me a couple of hours later to tell me that a PA from the neurosurgeon's office happened to come by and the doc presented my case. I was told that he also felt that I needed to be seen sooner and was going to try to get me in. I haven't heard anything yet, but hope to on Monday. All in all, I would say that the prayers are working. Thank you!
So, why am I not asleep after taking all my meds tonight? Because I am also taking Prednisone which counters all the sleepy side effects of oxycodone and jazzes me up like I am on crack. (like I know what it is like to be on crack) Basically, it just means I get to take one of my lower level oxycodones in just an hour. Thanks for reading my babble. Night y'all!
This afternoon, I came out of my bedroom to this jumbled up sound:
pa-pa-pa-pa-pa-pa-POP combined with lots of giggles and laughter. I walked into the kitchen to see my three children jumping around on 2x4 sheets of bubble wrap - all courtesy of the shipping department (i.e. Jay in our garage) of RaRa Telecom Supply. How much fun they were having with something so simple. I couldn't resist either and I walked over and did a quick jump. I know, what was I thinking with my back. Oh well, it was fun while the one jump lasted!
Jay decided to load up the kids tonight for a quick trip to Family Video. The kids had already gone to car, Jay said goodbye to me (or rather goodnight because I had just taken my nighttime meds) and I settled in for some rarely heard in our house silence. Just a few seconds later, I heard the front door squeak open and crying quickly filled the house again. Jay came in with Lily and said, "Lily peed in her pants and lied about it to me. She told me it was water. She doesn't get to go with us." Boy, she was really upset. But, it was a just punishment. It wasn't a complete pee - just the, "I waited a little too long and dribbled before I got to the potty" pee. We all know what I am talking about. But the smell was unmistakable. I have to give her some props for coming up with such a creative and yet plausible lie - water. So, Jay helped me get her into a pull-up (she still wears them at night) and I sent her to her bed to "think about it." A multitude of sobs, many pitifully said sorry's and enough crocodile tears to last the rest of the month went by and I told her she could come downstairs, but had to bring a book with her. She walked into my room with the BIGGEST pouty bottom lip. I think I could have used it as my nightstand. Seriously, I had to turn away because I couldn't contain my smile or laughter. It was the most pitiful little pout and one that I recognized in a few of my 3-4 year-old pictures. I got my obligatory "I am sorry Mommy, I will tell the truth, I won't pee-pee in my pants" acknowledgement. She hoped into the bed and we read Chicka Chicka Boom Boom - her new favorite little story.
This brings me to another point. We have this great book called, "2oth Century Children's American Classics." Actually, I shouldn't put that into quotes as I am not sure that is the correct title. Ordered it from Amazon and it is a fantastic collection of all the greatest children's books. Even Ethan will still pull it from the shelf. It has Amelia Bedelia, Curious George, Madeline, some Golden Books, Francis, even Goodnight Moon - all the great books from our generation as well as new ones like Chicka Chicka Boom Boom. It is a great gift idea - although now that I think about it, I have never given it as a gift. Probably because I am usually don't plan far enough ahead to order it, or even more accurately leave my house early to run by Target (buying tissue and a bag too) to grab something quick or a gift card on the way to the party. Sound familiar? Even though no one took me up on my last attempt to get comments, I will offer this question - what have been your favorite books to read to your kids, what have been their favorites (read obsession), or what did you love as a child?
On the back front - get it - update on the back? Jay got on the horn yesterday and begged the Neurologist to see me. They worked me in that day - he could sell reading glasses to a blind man. This was an appointment originally scheduled for the 13th. The verdict is that I need to get into the neurosurgeon sooner than the 22nd. They also upped my pain meds - whoo hoo and added in a med for nerve pain. I have lost the reflex in the bottom of my right heel and won't get it back. It is not a big deal, according to this doc as I don't really need it anyway. O - kay. A little strange, but, ok. I saw the MRI - they said it was "acute", "that I really know how to do it right", "a pretty nasty situation." There is disc fragment pressing on the S1 root which will need to be removed.
They called this morning to tell me they were unsuccessful in getting me in the neurosurgeon's any sooner than the 22nd. HOWEVER, the nurse I saw called me a couple of hours later to tell me that a PA from the neurosurgeon's office happened to come by and the doc presented my case. I was told that he also felt that I needed to be seen sooner and was going to try to get me in. I haven't heard anything yet, but hope to on Monday. All in all, I would say that the prayers are working. Thank you!
So, why am I not asleep after taking all my meds tonight? Because I am also taking Prednisone which counters all the sleepy side effects of oxycodone and jazzes me up like I am on crack. (like I know what it is like to be on crack) Basically, it just means I get to take one of my lower level oxycodones in just an hour. Thanks for reading my babble. Night y'all!
Wednesday, May 07, 2008
No whining - just an update
I promise that I will not let this blog become a spiraling ode to whining, complaining and self-pity. Especially after knowing what is happening in Myanmar (formerly Burma), what do I really have to say in comparison to that.
But, to be informative, that two friends who are physical therapists say that it is highly likely I will have back surgery. I have a large protruding disc fragment that is usually not healed by conservative measures and PT. Bummer. The good side is the surgery is relatively minor and some patients even feel relief in the recovery room. I think I have to lay low 6-8 weeks after.
The earliest appointment for the neurosurgeon is the 13th - and that is not the particular office or doc I wanted. I also have an appointment on the 22nd for the practice I wanted, 3oth to get my doc of choice. I was going to wait it out until the 30th (although I hadn't figured out how), but then was told that I could risk permanently damaging the root nerve if I wait too long.
My prayer requests:
1. Healing and relief from pain.
2. Doctor has a cancellation and I can slip in there sooner
3. Surgery, if needed, would happen before the end of May for two reasons
a. Kids are still in school
b. My mom leaves to visit little John and Alisa until the end of June
4. Jay - because the new company just started and he needs me. I am limited in what I can do.
I am to let pain be my guide - so basically no driving. No lifting, no bending at the waist - walking will be limited because pain increases the longer I stand - I can take about 10-15 minutes and then I have to lay down.
So - call me, come visit me, email me. Predictably, I will be at home.
But, to be informative, that two friends who are physical therapists say that it is highly likely I will have back surgery. I have a large protruding disc fragment that is usually not healed by conservative measures and PT. Bummer. The good side is the surgery is relatively minor and some patients even feel relief in the recovery room. I think I have to lay low 6-8 weeks after.
The earliest appointment for the neurosurgeon is the 13th - and that is not the particular office or doc I wanted. I also have an appointment on the 22nd for the practice I wanted, 3oth to get my doc of choice. I was going to wait it out until the 30th (although I hadn't figured out how), but then was told that I could risk permanently damaging the root nerve if I wait too long.
My prayer requests:
1. Healing and relief from pain.
2. Doctor has a cancellation and I can slip in there sooner
3. Surgery, if needed, would happen before the end of May for two reasons
a. Kids are still in school
b. My mom leaves to visit little John and Alisa until the end of June
4. Jay - because the new company just started and he needs me. I am limited in what I can do.
I am to let pain be my guide - so basically no driving. No lifting, no bending at the waist - walking will be limited because pain increases the longer I stand - I can take about 10-15 minutes and then I have to lay down.
So - call me, come visit me, email me. Predictably, I will be at home.
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