I just realized something.
I'm angry.
I am...I am freaking livid.
I know, I know. I've stated all of this wonderful, soulful.."Oh, I'm just so thankful it's something treatable"
We both know that's the way I'm supposed to feel.
But today..let me tell you how I really feel.
I'm sick of trying to fit into the shell of what a person with a life altering illness is supposed to think say and feel.
I'm tired of being gracious about it.
I want to scream....
I want to cry (I'm doing that like a pro these days)
and I want to really hit something so hard that it shatters.
I mean total annihilation.
I don't want to be this pansy person.
I had hopes and dreams.
I wanted to climb Mt. Everest.
I wanted to cheer in college.
I wanted to run a marathon.
Did I want to or did I just want to want to?
No..I really wanted to.
I never could hold up. I was tired so easily. My friends were running their little legs off and I was like.."Hey, how about I go get water for everyone.".. (And I was a damn good water getter).
What brought this on?
Well..I had my PT evaluation today.
I kept thinking about all of the things I haven't written anywhere.
The things that are in my head that should be in a book somewhere for someone like me to read!
Like..Have I ever mentioned that I can trace my symptoms back to age 13?
I'm 13, chilling at the country club, eating crackers. (Nekot's to be exact)
and a couple of my teeth crumble...I mean..fell into pieces.
Come on..It's just a CRACKER!!
The dentist scolds my mom for all the Cokes she drank while I was baking in her oven..and proceeds to put pins in my teeth to hold them together. By the end of the summer, I had pins in all of my back lower teeth.
After that, I just dealt with headaches, fatigue, leg pains, etc. The local dr. always chalked it up to growing.
Scoliosis..hyper mobility of joints (aka double jointed)...Mom was told to put me in aerobics.
Aerobics? I lived in the Mississippi Delta..Aerobics were chasing the horses when they got out of the pasture.
Do you think anyone...ANYONE..could have cared enough to look a little deeper..you know..actually do their job? Ehlers-Danlos Syndrome ...c'mon..pay attention. Scoliosis, double jointedness (not sure that's a word), tooth crumbling... Investigate...CARE!
(I'm sorry..it's that kind of day..I want to scream.. and..you know what, you voluntarily came to this blog..so..what you see is what you get.)
Today.. is not the day I will be noble and selfless.
Today..at lest for the next hour..I will saturate myself in despair.
I want to get it all out...and I warn you..it won't be the last time.
Fast forward, I'm 24.
I've had two beautiful babies, one only 10 mths old.
I get the diagnosis. "Cervical and Uterine carcinoma in situ".
(Like my doctor wrote when he faxed the pathology to my ex husband...who still maintains that there has NEVER been ANYTHING REALLY WRONG WITH ME.....this means CANCER.)
Fine..I have a hysterectomy.
A few months later..adhesion problems. Laparoscopies for adhesions x 5 over the next few years.
(EDS is linked to adhesions and abnormal wound healing...I''m just sayin').
According to the Ex...it's "all in my head". Because, as we all know, surgeons and microsurgeons just cut, lazer and bovie people for the heck of it. (as a sidenote..in each case, adhesions were removed and organs freed...not all in my head)
Fast forward again, 13 years ago.
I wake up, with this horrendous black breast discharge all over my pajama top.
I call my friend..off we go to the first of 4 physicians who test me for every type of cancer, perfom a galactogram (you don't want to know), and ultimately say it's benign drainage and remove all of my milk ducts from my breasts. ALL of them.
I had lovely penrose drains that I had to remove at home from this surgery.
Blood work was done on the pituitary,
but NO ONE thought to order a brain MRI and actually look at that gland.
See..I found out last October that my pituitary has been flattened for years, a condition called Empty Sella Syndrome. The pressure from the Chiari Malformation basically squished my pituitary flat..and that causes..dom dom dom.....you guessed it...breast discharge!! AAARRRGGGGHHHHH!!!!!
I could go on and on..but I think that's enough for today..and I need to break from the laptop, and to calm down, crying makes my head pound.
One last thing I want to say to the Ex...You were right..It was all in my head, but I did not need to be told that over and over and over...I did not need to be chastised for my health for 20 years. I did not need to be yelled at and called names and made ashamed of having medical bills. I did not need it and ...usually, I'm not bitter or angry..and usually I think I've forgiven you ...but today...just for today..I'm mad and I want to be normal and healthy. I want to be bright and shiny.
I'm just a person...that is ALL I AM!
I will leave you with this great quote by Elizabeth Gilbert that I found this morning.
“I thought about the relentless thought-processing, soul-devouring machine that is my brain, and wondered how on earth I was ever going to master it. Then I remembered that line from Jaws and couldn't help smiling: 'We're gonna need a bigger boat.”
― Elizabeth Gilbert,
Thursday, February 28, 2013
Wednesday, February 20, 2013
Feb. 19, 2013
Made it through the weekend just fine. I'm a little more active every day. I have trouble pacing myself, so what happens is that I'm doing fine cooking, cleaning or what ever...not looking at the time and then suddenly my head and the rest of my body turn on me...and that's it, I'm done. Then I'm back into bed, usually in tears, gulping down a pain pill and waiting for it to pass. It's this poor judgement on my part that got my Mom to drive another 10 hrs. back to Texas to spend another week. (well, that and several emotional breakdown's over the phone)- I'm sure she is SO proud!
I spoke with Dr. Kim's office yesterday morning about the new headache. They increased the frequency of my pain meds, called me in more and told me that if I don't see a difference in 7 days to let them know and they will call in steroids. The problem with steroids for my body (besides yucky weight gain) is that my body will get dependent on the steroids to feel better, then I'll have to wean off again and go through the same pain. I've taken so many pain pills and so much ibuprofen it seems excessive, however..Dr Kim said..."Just take them..it's only been 3 1/2 weeks...it's going to hurt"..Thanks Dr.K.. very encouraging.
I went back to my PCP, Dr. Horner, this afternoon. The lymph nodes are smaller..but not gone. He wants to watch them over another week or two, expecting they will continue to shrink. If they get larger then back in I go for blood work. He said one reason for one of the lymph nodes not shrinking quickly is that it's positioned beside a very atrophied muscle. I apparently have severely atrophied muscles in my neck, shoulders and upper back. As soon as Dr. Kim gives the nod, Dr. Horner wants me to go to a craniosacral specialist for at least a month of PT and rehab. This will help with rebuilding muscle strength (which Dr. H says is at less than 80% since surgery) and will ultimately help my vision (due to the fact that ocular nerves are very much affected by neck movements---very interesting to me). After the month, we will reassess and plan further. I am to rest my eyes as much as possible through out this process..and in about 6 weeks he wants me to have a check up with a neurological ophthalmologist and begin speech therapy.
Basically...I will have to continue being patient and limiting my visual stimuli. And on that note..Mom just came and shook her finger at me that my time is up.
Thanks for your continued support.
Made it through the weekend just fine. I'm a little more active every day. I have trouble pacing myself, so what happens is that I'm doing fine cooking, cleaning or what ever...not looking at the time and then suddenly my head and the rest of my body turn on me...and that's it, I'm done. Then I'm back into bed, usually in tears, gulping down a pain pill and waiting for it to pass. It's this poor judgement on my part that got my Mom to drive another 10 hrs. back to Texas to spend another week. (well, that and several emotional breakdown's over the phone)- I'm sure she is SO proud!
I spoke with Dr. Kim's office yesterday morning about the new headache. They increased the frequency of my pain meds, called me in more and told me that if I don't see a difference in 7 days to let them know and they will call in steroids. The problem with steroids for my body (besides yucky weight gain) is that my body will get dependent on the steroids to feel better, then I'll have to wean off again and go through the same pain. I've taken so many pain pills and so much ibuprofen it seems excessive, however..Dr Kim said..."Just take them..it's only been 3 1/2 weeks...it's going to hurt"..Thanks Dr.K.. very encouraging.
I went back to my PCP, Dr. Horner, this afternoon. The lymph nodes are smaller..but not gone. He wants to watch them over another week or two, expecting they will continue to shrink. If they get larger then back in I go for blood work. He said one reason for one of the lymph nodes not shrinking quickly is that it's positioned beside a very atrophied muscle. I apparently have severely atrophied muscles in my neck, shoulders and upper back. As soon as Dr. Kim gives the nod, Dr. Horner wants me to go to a craniosacral specialist for at least a month of PT and rehab. This will help with rebuilding muscle strength (which Dr. H says is at less than 80% since surgery) and will ultimately help my vision (due to the fact that ocular nerves are very much affected by neck movements---very interesting to me). After the month, we will reassess and plan further. I am to rest my eyes as much as possible through out this process..and in about 6 weeks he wants me to have a check up with a neurological ophthalmologist and begin speech therapy.
Basically...I will have to continue being patient and limiting my visual stimuli. And on that note..Mom just came and shook her finger at me that my time is up.
Thanks for your continued support.
Feb. 15, 2013
I've spent the day doing nothing. I haven't even done the dishes. Bob is taking me to dinner tonight at 135 Prime, my favorite restaurant in Waco. I was so tired from yesterday that I didn't want to push it and be too tired for our dinner out. So, I've watched Eat Pray Love twice today and napped. I still have the headache. This is day 3, but its not too bad. I'm giving it until Monday. If its not completely gone, I'll call Dr. Kim. The lymph node is almost gone..and I feel like I'm speaking a little better. Mom is coming back next week to help me work on some wedding issues, or at least to force me to make a few decisions. One problem with Chiari is trouble with decision making. I really don't see an improvement in that symptom..and I've got less than 60 days until the big day. I can't believe I'm such a lucky girl.
Today, there was a contest on the internet. To enter you had to answer the question, "If you could stay any age for the rest of your life, what age would that be?"
I thought really hard..for about 5 seconds before answering (the prize is a Le Creuset pot):
"I would stay the age I am now, 44. The past year has been the most wonderful and most frightening of my life. I fell in love with an amazing man that loves and supports me through everything. He encourages me to not only have dreams, but to do all I can to make them a reality. Then, I was diagnosed with Chiari and faced brain surgery. The months and weeks of searching for the right neurosurgeon and living with the increasing symptoms, and then going "under the knife" were horrible...but he loved me through it...every day...every tear...every fear. Now I have just to heal and have a better life than ever before...and I have the perfect person to share it with."
I must say, I laughed at all of the people that said, "I'd be 21 again"..Ha! No Way...
Now..I have to go start slowly getting ready. I have a date..and for the first time in 3 weeks..I'd like to look pretty.
Have a great weekend!
I've spent the day doing nothing. I haven't even done the dishes. Bob is taking me to dinner tonight at 135 Prime, my favorite restaurant in Waco. I was so tired from yesterday that I didn't want to push it and be too tired for our dinner out. So, I've watched Eat Pray Love twice today and napped. I still have the headache. This is day 3, but its not too bad. I'm giving it until Monday. If its not completely gone, I'll call Dr. Kim. The lymph node is almost gone..and I feel like I'm speaking a little better. Mom is coming back next week to help me work on some wedding issues, or at least to force me to make a few decisions. One problem with Chiari is trouble with decision making. I really don't see an improvement in that symptom..and I've got less than 60 days until the big day. I can't believe I'm such a lucky girl.
Today, there was a contest on the internet. To enter you had to answer the question, "If you could stay any age for the rest of your life, what age would that be?"
I thought really hard..for about 5 seconds before answering (the prize is a Le Creuset pot):
"I would stay the age I am now, 44. The past year has been the most wonderful and most frightening of my life. I fell in love with an amazing man that loves and supports me through everything. He encourages me to not only have dreams, but to do all I can to make them a reality. Then, I was diagnosed with Chiari and faced brain surgery. The months and weeks of searching for the right neurosurgeon and living with the increasing symptoms, and then going "under the knife" were horrible...but he loved me through it...every day...every tear...every fear. Now I have just to heal and have a better life than ever before...and I have the perfect person to share it with."
I must say, I laughed at all of the people that said, "I'd be 21 again"..Ha! No Way...
Now..I have to go start slowly getting ready. I have a date..and for the first time in 3 weeks..I'd like to look pretty.
Have a great weekend!
Feb. 14, 2013
I'm frustrated. I have so much I want to do...but can't. I know I'm supposed to rest...when I rest then I feel better so I want to do something. Then I do something...or over do something and have to go to bed for the rest of the day. This resting phase is really getting to me. I know I sound ungrateful, I don't mean to. Patience is not one of my stronger virtues. In addition, I've had the same headache for 2 days now...not horrible, but ever present. I know I have to call Dr. Kim. I just don't want to. I know I'm healing because the horrible squeezing pain comes way less frequently...and for that I'm very happy.
I'm frustrated. I have so much I want to do...but can't. I know I'm supposed to rest...when I rest then I feel better so I want to do something. Then I do something...or over do something and have to go to bed for the rest of the day. This resting phase is really getting to me. I know I sound ungrateful, I don't mean to. Patience is not one of my stronger virtues. In addition, I've had the same headache for 2 days now...not horrible, but ever present. I know I have to call Dr. Kim. I just don't want to. I know I'm healing because the horrible squeezing pain comes way less frequently...and for that I'm very happy.
Feb. 13, 2013
Today is 3 weeks since surgery. I can't believe how far I've come in this short time. I still see such great improvement in symptoms. I've yet to have a totally narcotic free day. I thought I would make it yesterday, then I was blasted with a horrible headache late afternoon....then some new and not so fun muscle spasms in my neck. I try to not get frustrated. Being home alone for such long periods of time gives me so much (maybe too much) time to think.
The enlarged lymph node hasn't really gotten any smaller in the past few days, however, it's no bigger and hopefully by the end of the 10 days it will be completely gone.
Dr. Kim said the usual time for complications is between weeks 2 and 4. He further said to call him if my headaches worsen. I woke up with a headache this morning...a real headache..and it's lingering. I am trying to pray these headaches away. As vain as it sounds, I'm afraid of being put on steroids...which is what he told me would happen if I began having headache recurrence. I am getting married 2 months from today..and don't want to be puffy from steroids. I know...vain, vain, vain. Hey, at least I'm honest.
I'm excited that I may possibly get to meet another of my Chiari friends next week. I referred her to Dr. Kim so she is driving down to Houston from Oklahoma this coming Tuesday. Her name is Tonya. She has suffered for along time..and is ready to give up. Add her to your prayer list if you don't mind.
This whole journey has me so perplexed. I am trying to determine how to best help other people like myself. There is no need for the suffering so many go through just to find help. How do I advocate for these people? I've looked into starting a non-profit organization and am trying to grasp what all that entails. I have a Facebook page dedicated to Chiari called The Constricted Cranium, as well as a blog by the same name: constrictedcranium.blogspot.com -that I'm using to promote awareness..I just feel like there is more I could be doing or should be doing. At least I want to do more. I don't know..like I said, I think too much these days and frankly, it makes my head hurt more. How does one just not think? If you have a method, please let me know!
Today is 3 weeks since surgery. I can't believe how far I've come in this short time. I still see such great improvement in symptoms. I've yet to have a totally narcotic free day. I thought I would make it yesterday, then I was blasted with a horrible headache late afternoon....then some new and not so fun muscle spasms in my neck. I try to not get frustrated. Being home alone for such long periods of time gives me so much (maybe too much) time to think.
The enlarged lymph node hasn't really gotten any smaller in the past few days, however, it's no bigger and hopefully by the end of the 10 days it will be completely gone.
Dr. Kim said the usual time for complications is between weeks 2 and 4. He further said to call him if my headaches worsen. I woke up with a headache this morning...a real headache..and it's lingering. I am trying to pray these headaches away. As vain as it sounds, I'm afraid of being put on steroids...which is what he told me would happen if I began having headache recurrence. I am getting married 2 months from today..and don't want to be puffy from steroids. I know...vain, vain, vain. Hey, at least I'm honest.
I'm excited that I may possibly get to meet another of my Chiari friends next week. I referred her to Dr. Kim so she is driving down to Houston from Oklahoma this coming Tuesday. Her name is Tonya. She has suffered for along time..and is ready to give up. Add her to your prayer list if you don't mind.
This whole journey has me so perplexed. I am trying to determine how to best help other people like myself. There is no need for the suffering so many go through just to find help. How do I advocate for these people? I've looked into starting a non-profit organization and am trying to grasp what all that entails. I have a Facebook page dedicated to Chiari called The Constricted Cranium, as well as a blog by the same name: constrictedcranium.blogspot.com -that I'm using to promote awareness..I just feel like there is more I could be doing or should be doing. At least I want to do more. I don't know..like I said, I think too much these days and frankly, it makes my head hurt more. How does one just not think? If you have a method, please let me know!
Feb. 11, 2013
First day home alone...it's 9:15 and I need a nap. I have only refilled my coffee cup and made a few phone calls. The phone calls just take it out of me...total energy zappers.
Yesterday was a good day. I was relatively pain free until late afternoon when I got hit with horrible pain. After a few hours it was back under control and I felt human again. I think I brought this on myself with too much visual stimulation. I really don't know where to safely set limits on myself in this area. I keep thinking.."It's been almost 3 weeks..surely I can do more than this.." I am not very patient I suppose.
I, however, am very grateful. Though this "Chiari Journey" has been long and difficult in many ways..there are very few cases of it being terminal. Debilitating, yes...crippling..yes--and there are those who lose the battle and die from complications. I'm grateful that I found help..my surgery is considered a success..even if I don't get any better than I am today, I so much greatly improved from where I was.
Not everyone has this outcome with a long-term illness. I was reminded of this just minutes ago when I read the Facebook post of a friend (which leads me to the comment below). I am incredibly blessed.
I was very sad to learn this morning that my sweet friend, Alisa Dye has leukemia. She has a new CaringBridge page..and she is in much greater need of prayer than I. Please add her to your prayer lists everywhere. Lisa is the person that inspired me to become a nurse, we went to church together, home-schooled together, were in Bible study together...and I am just in shock that this all has come about in the last week or so..and she has already started chemo. Lisa asked specifically for prayer for remission. Please lift up Alisa (I call her Lisa) and her daughter Raven during this time.
First day home alone...it's 9:15 and I need a nap. I have only refilled my coffee cup and made a few phone calls. The phone calls just take it out of me...total energy zappers.
Yesterday was a good day. I was relatively pain free until late afternoon when I got hit with horrible pain. After a few hours it was back under control and I felt human again. I think I brought this on myself with too much visual stimulation. I really don't know where to safely set limits on myself in this area. I keep thinking.."It's been almost 3 weeks..surely I can do more than this.." I am not very patient I suppose.
I, however, am very grateful. Though this "Chiari Journey" has been long and difficult in many ways..there are very few cases of it being terminal. Debilitating, yes...crippling..yes--and there are those who lose the battle and die from complications. I'm grateful that I found help..my surgery is considered a success..even if I don't get any better than I am today, I so much greatly improved from where I was.
Not everyone has this outcome with a long-term illness. I was reminded of this just minutes ago when I read the Facebook post of a friend (which leads me to the comment below). I am incredibly blessed.
I was very sad to learn this morning that my sweet friend, Alisa Dye has leukemia. She has a new CaringBridge page..and she is in much greater need of prayer than I. Please add her to your prayer lists everywhere. Lisa is the person that inspired me to become a nurse, we went to church together, home-schooled together, were in Bible study together...and I am just in shock that this all has come about in the last week or so..and she has already started chemo. Lisa asked specifically for prayer for remission. Please lift up Alisa (I call her Lisa) and her daughter Raven during this time.
Sunday, February 10, 2013
Written 2 hours ago by Michele Robinson (Duffey)
Mom left yesterday morning and made it safely to
Mississippi. I'm a little anxious about being home alone next week, but
know I will be fine. Pacing myself seems to be the key..that and
limiting computer, texting and television time. That's so difficult.
Everyone says.."Just rest"...Easy to say..but so so boring. I should've
gotten a couple of audio books..but didn't think of it until just now.
It seems as though the antibiotics are working..that pesky lymph node is
noticeably smaller. Pain is much better in some aspects--however new
pains show up randomly..overall I'm doing well when I follow the dr's
instructions. My hair is growing back pretty quickly..or at least it
seems quick to me. Bob looks at me every so often and says, "Welcome
Back"--it's funny..because I do feel like I've been on this long
journey..not just since surgery, but the weeks and months leading up to
it. I was so "in my head" all the time..trying to stand up and balance,
trying to remember things, trying to say the right words, trying to make
sure I swallowed correctly, trying to blink away blurry vision, trying
to work without making mistakes, trying to hear , trying to drive
safely...I feel like I was in a shell of myself..not able to get out of
it. This weird shell/fuzzy thing comes and goes..I still feel strange
on and off, not sure what triggers it- (brain swelling certainly plays
a role). I don't know if that makes any sense at all..but it does to
me..and I feel like these times out the shell are lasting longer and
longer. I can't tell my speech is any better. If you had a conversation
with me you would think I sound fine (I hope). For me..it's sometimes
exhausting to have a conversation. I have to think and talk...and it's
like the words get all stacked on top of each other and won't come out
right. So, if you've called and I haven't called you back, please don't
be offended. I will call you back eventually...and Dr. Kim assured me
this will get better with time.
My computer time is up..and besides...this really handsome guy just brought me a cup of coffee, so I think I'll go enjoy it with him.
Have a great Sunday.
My computer time is up..and besides...this really handsome guy just brought me a cup of coffee, so I think I'll go enjoy it with him.
Have a great Sunday.
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Written 2 hours ago by Michele Robinson (Duffey)Mom left yesterday morning and made it safely to Mississippi. I'm a little anxious about being home alone next week, but know I will be fine. Pacing myself seems to be the key..that and limiting computer, texting and television time. That's so difficult. Everyone says.."Just rest"...Easy to say..but so so boring. I should've gotten a couple of audio books..but didn't think of it until just now. It seems as though the antibiotics are working..that pesky lymph node is noticeably smaller. Pain is much better in some aspects--however new pains show up randomly..overall I'm doing well when I follow the dr's instructions. My hair is growing back pretty quickly..or at least it seems quick to me. Bob looks at me every so often and says, "Welcome Back"--it's funny..because I do feel like I've been on this long journey..not just since surgery, but the weeks and months leading up to it. I was so "in my head" all the time..trying to stand up and balance, trying to remember things, trying to say the right words, trying to make sure I swallowed correctly, trying to blink away blurry vision, trying to work without making mistakes, trying to hear , trying to drive safely...I feel like I was in a shell of myself..not able to get out of it. This weird shell/fuzzy thing comes and goes..I still feel strange on and off, not sure what triggers it- (brain swelling certainly plays a role). I don't know if that makes any sense at all..but it does to me..and I feel like these times out the shell are lasting longer and longer. I can't tell my speech is any better. If you had a conversation with me you would think I sound fine (I hope). For me..it's sometimes exhausting to have a conversation. I have to think and talk...and it's like the words get all stacked on top of each other and won't come out right. So, if you've called and I haven't called you back, please don't be offended. I will call you back eventually...and Dr. Kim assured me this will get better with time.
My computer time is up..and besides...this really handsome guy just brought me a cup of coffee, so I think I'll go enjoy it with him.
Have a great Sunday.
-
Written Feb 8, 2013 1:35pm by Michele Robinson (Duffey)Today has been better. I've steered clear of the computer except for 10 minutes this morning..and I'm giving myself 10 minutes now. I proofed my wedding invitations this morning..so feel like I've at least accomplished something. Mom and I went out for a few hours..for breakfast and lunch...and now I'm wiped out and ready for nap. Mom is going back to Mississippi tomorrow, Bob will be home for the weekend..and Monday it looks like I'm on my own. As long as I pace myself, I should be fine. I've come a long way in 16 days, so I fully expect things to only get better from here. I'm so fortunate to have a mom that is willing and capable to come and camp out with me for so long. Thanks Mom!
this
My visit to see Dr. Horner went well. He was
impressed with my healing so well for being only 2 weeks post-op. After
careful examination, he is confident that I have an enlarged lymph node
(lymphadenitis) due to some stray bacteria from my incision. He put me
on some strong antibiotics (due to being hospitalized...there is a risk
of it being MRSA or some other hospital borne bug) and said if it's a
lymph node it will be gone in 7-10 days. I was instructed to go back if
it had not resolved by then. Also, Dr. H is sending me to a speech
pathologist to try to resolve some speech issues..and he told me to
steer clear of my iphone and computer until I've healed more. Light
combined with brain inflammation does not promote healing. He said the
best place for me is in a dark room...but I'm weepy enough as it is..I
can't handle that. Therefore, I'll be online only incrementally and
forgive me if I don't reply to texts, phone calls quickly..I'm trying to
keep the visual stimuli to a minimum. I'm tired. I got my sleep all
mixed up the last two days and am trying to stay awake all day so I can
sleep tonight. Otherwise, it has been a good, relatively pain-free day.
If I could ask a favor, please pray for my friend Rosalyn's mother-in- law, she just had surgery a few days ago..and now they are going back in as the first surgery didn't do the trick.
Thanks again for your continued support.
If I could ask a favor, please pray for my friend Rosalyn's mother-in- law, she just had surgery a few days ago..and now they are going back in as the first surgery didn't do the trick.
Thanks again for your continued support.
Wednesday, February 6, 2013
Yesterday was long...and has gotten even longer. Mom and I made the
long trip to Houston for my check-up with Dr. Kim. I was able to visit
with Laine for a few minutes (see photos) and compare recoveries. She
had a great first week and is now having alot of pain and blood sugar
problems. My overall pain has decreased from week one..and I am counting
on that being a continuing trend. Dr. Kim said I'm doing as well as he
could expect and that I should continue to improve. He said weeks 2-4
can be the worst in some ways and to watch for headaches, because if
they increase it could be infection or swelling, needing antibiotics
and/or steroids. I got my 18 stitches out (Laine only had 10...no fair)
and Dr. Kim was his same warm self, with his sweet kiss on the cheek. ( I
wonder if he does this to the male patients?) He said wait 4 more
weeks before attempting to go at my normal "speed". So,I'm going to
take it super slow..or as much as I can. Nights like last night will
slow me down.
Randomly, at about 8 pm, my head started hurting. I tried to read a chapter in a new book..(didn't really work..I read 5-10 minutes then took a break a couple of times) finally by 8 pm my head was hurting so bad I was forced to stop, took ibuprofen and a pain pill and I think I fell asleep. I woke up again at 9:58 pm...raging head pain..and I've basically been up since. I've dosed a few times..and I'm popping pain pills like a junkie. I 'm really hoping this is related to riding all day yesterday. I'll give it a day to get under control. If it worsens then I'll call Dr. Kim.
For now, I'm going to try to go back to sleep for awhile..which seems harder because I know I should be awake doing something..anything besides sleeping. I feel like I just worked a night shift...my body says to sleep..my mind won't turn off..and my head just plan hurts.
Have a great day. I'll check in later. Thanks for your continued support.
Randomly, at about 8 pm, my head started hurting. I tried to read a chapter in a new book..(didn't really work..I read 5-10 minutes then took a break a couple of times) finally by 8 pm my head was hurting so bad I was forced to stop, took ibuprofen and a pain pill and I think I fell asleep. I woke up again at 9:58 pm...raging head pain..and I've basically been up since. I've dosed a few times..and I'm popping pain pills like a junkie. I 'm really hoping this is related to riding all day yesterday. I'll give it a day to get under control. If it worsens then I'll call Dr. Kim.
For now, I'm going to try to go back to sleep for awhile..which seems harder because I know I should be awake doing something..anything besides sleeping. I feel like I just worked a night shift...my body says to sleep..my mind won't turn off..and my head just plan hurts.
Have a great day. I'll check in later. Thanks for your continued support.
Monday, February 4, 2013
I haven't posted in a few days. I guess I don't really know what to write. I feel better...then I don't...then I'm nauseated...then I'm not...then my head hurts..then it doesn't. Neuro recovery is different than other recoveries. Usually..it's all about the incision healing. That is the least of the issues for me. My hearing is great...then it's not. My eyes are fine..then they are not. I can have a conversation and I'm fine..the next conversation is filled with jumbled words and thoughts that I can't get out. Don't get me wrong..things are so much better than before surgery..in so many ways..I just didn't expect such an internal struggle..mental fatigue. I feel selfish and self-centered..and I've always strived to not be that way. I feel like I'm sitting and forever thinking, analyzing my brain..and I don't know how to click back into being normal.
I will say that I have been so touched by the kindness of others. Jason and Tami came over and provided dinner..(which is a story in itself that I'll go into detail about another time), Stefanie came to visit, Bonnie and Wayne came to visit...unexpected gifts and kindnesses from people I never expected to hear from..It's been very touching. At the same time, I feel sad that I haven't heard from others..it's odd how we have these expectations of people..you know..those people you think will be your strongest support..or your biggest fan...and then...they aren't. I had a couple of times over the weekend that I got a little down about unmet expectations...but I quickly kept myself in check by reminding myself how many totally unexpected kindnessess, well-wishes and prayers I've recieved. I had a donation made to CaringBridge by one of my mom's classmates...my mom is almost 70...and her classmates from high school are posting on here and giving tributes...How awesome is that? (Thanks Fay and Janice for your support). My sweet cousin in MS has her Sunday School Class praying for me still....in small-town Batesville...and I get messages from people I haven't seen in years in my hometown of Charleston...You all have no idea how touched an honored I have been..I told Bob this morning.."I think brain surgery makes you emotional."...As I read a simple, "I'm praying for you..text" and cried for no reason. .(.I bet he was so glad to go to work this morning!)
Forgive the rambling..I guess it's gonna be an emotional day.Pray for Mom and Bob as they are the ones here riding the emotional rollercoaster with me.
Mom and I go to Houston to get my stitches out tomorrow. I'll post again after that. Have a great Monday!
I will say that I have been so touched by the kindness of others. Jason and Tami came over and provided dinner..(which is a story in itself that I'll go into detail about another time), Stefanie came to visit, Bonnie and Wayne came to visit...unexpected gifts and kindnesses from people I never expected to hear from..It's been very touching. At the same time, I feel sad that I haven't heard from others..it's odd how we have these expectations of people..you know..those people you think will be your strongest support..or your biggest fan...and then...they aren't. I had a couple of times over the weekend that I got a little down about unmet expectations...but I quickly kept myself in check by reminding myself how many totally unexpected kindnessess, well-wishes and prayers I've recieved. I had a donation made to CaringBridge by one of my mom's classmates...my mom is almost 70...and her classmates from high school are posting on here and giving tributes...How awesome is that? (Thanks Fay and Janice for your support). My sweet cousin in MS has her Sunday School Class praying for me still....in small-town Batesville...and I get messages from people I haven't seen in years in my hometown of Charleston...You all have no idea how touched an honored I have been..I told Bob this morning.."I think brain surgery makes you emotional."...As I read a simple, "I'm praying for you..text" and cried for no reason. .(.I bet he was so glad to go to work this morning!)
Forgive the rambling..I guess it's gonna be an emotional day.Pray for Mom and Bob as they are the ones here riding the emotional rollercoaster with me.
Mom and I go to Houston to get my stitches out tomorrow. I'll post again after that. Have a great Monday!
This is a pillow.. I highly recommend getting one if you are having surgery..the pin sites (from the cranial fixators are swollen and sore still, but this is so soft I can rest my head on it..none of my other pillows are this comfy)
Written Feb 1, 2013 7:40am by Michele Robinson (Duffey)
Okay..I had a pity party last night. My bandage was half off, so Bob removed it..and even though I knew what the incision would kind of look like, I had a complete breakdown when I saw it. I mean..I sobbed like a baby. I had to apologize to Mom and Bob later for being so silly and vain. (and I recalled the quote from a Chiari blog: "You know you have Chiari when your biggest concern about BRAIN surgery is how you will fix your hair afterward.") I could have an incision in the front, or my enitre head could be shaved..or worse..I could have an illness with no available treatment. Again, I had to reel myself in and look for the positives.
As far as recovery, pain was better-or maybe just different yesterday. Dr. Kim called late yesterday afternoon and said to "hang in there..it should get better from here". So..I'm hanging in ..and counting my blessings. Today Mom and I are going to venture out of the house again and I'm looking forward to it.
..It looks horrible, but with my hair down..it's like it never happened...well..almost.
As far as recovery, pain was better-or maybe just different yesterday. Dr. Kim called late yesterday afternoon and said to "hang in there..it should get better from here". So..I'm hanging in ..and counting my blessings. Today Mom and I are going to venture out of the house again and I'm looking forward to it.
..It looks horrible, but with my hair down..it's like it never happened...well..almost.
Written Jan 31, 2013 11:15am
Today is a much better day. I actually slept for almost 6 hours straight last night...and woke up with no pain this morning. I actually left my little chateau for a few hours this morning. Mom took me to pay for wedding cake, wedding rentals, a stop at the bank and a brief visit to the the bridal salon so she could get a glimpse of my dress. I feel like I've run a marathon and am now snuggled in my bed with my new snuggle buddy Tami and Jason sent me yesterday (I'll post a picture). Yesterday, I noticed that I was able to stand and put on a pair of pj bottoms without falling over..I know that seems small..but I haven't been able to do that in years. I can also stand in one spot without rocking back and forth on my feet trying to keep my balance..I feel like a new, balanced person. Part of me is afraid to trust the changes....afraid they won't last...I know for certain I will never take things like balance, hearing and clear vision for granted ever again. I've not had a dizzy spell since surgery either. Last night I was complaining to Bob about the pain, as it got severe for just a few minutes...and today I'm thinking how ungrateful I am to complain so. Things could be much worse.Instead of complaining, I need to keep reminding myself how fortunate I am and how miraculous it is to be where I am just 8 days after brain surgery. So..if you catch me complaining...tell me to be quiet and count my blessings. Have a great day!
Written Jan 30, 2013 7:22am
I learned my lesson, and have kept the pain meds on a strict schedule. Dr. Kim's office called around noon yesterday..and I found that the pain level I have is normal, everything is normal. They said to wait a few more days before trying to back off the pain pills again..to rest..that my brain is inflamed in the two surgical areas and it basically has to re-learn how to process pain while adjusting to the changes in CSF pressure. I'm no neuro guru..so this is all new territory to me. I had read alot about post op care..but nothing told me how uncomfortable this would be. My sweet Chiari friend, Megan had warned me..but I didn't really get it...NOW I GET IT! I'm thankful for her as she has allowed me to vent and whine to her. I had a visit from Linda Stallard yesterday, she brought us a wonderful pot roast for dinner last night. Later in the day, Tami and Jason came for a visit. Jason is still waiting on results on his possible aneurysm. It was nice to sit on the sofa and laugh like a normal person. Friends are priceless right now. It really lifts my spirits to visit with people. Yes, It's exhausting, but very worthwhile. Mom has agreed to stay until after my post op appt. on February 5. I'm so glad to have her here...I couldn't imagine being home alone everyday right now.
Have a wonderful Wednesday. Thanks for your continued support!
Have a wonderful Wednesday. Thanks for your continued support!
Written Jan 29, 2013 9:40am
SO, In my wisdom, I decided to start weaning myself off pain meds by only taking 1/2 a pill....I paid for it. Barely sleeping last night, combined with added discomfort and nausea this morning..made for a rough start to the day. So now, I sit here, sipping ginger ale and eating saltines.. and almost at the end of my tolerance for light and sound for awhile...and wishing I could write more. I've found that this is a really good time to pray..so I'm taking full advantage of that. Oh, and I was just informed that Bob's step-mom, Kitty came through surgery with no problems and will be home by this evening. YAY!
Written Jan 28, 2013 9:34am
One of our dear friends, Jason, had a visit to the ER last night..and may possibly have an aneurysm. Please include Jason and his sweet wife, Tami (yes--the same Tami that took me to Houston last week) in your prayers. This has been a busy time of prayer. Let's re-cap...first, Bob's mother passed away, her funeral was the same day as my surgery. Bob's brother in law had open heart surgery on Friday, he's still in ICU ( please pray fro Jim, Deborah and Laura), Bob's family is still grieving over his mother's loss (Please pray for Steve & Suzanne, Nancy & Steve-this Steve sprained his ankle during the trip to FL for the funeral), Now, Jason is at home, after a trip to the ER and a lumbar puncture last night..he's waiting on another test to determine if he needs surgery for the possible aneurysm...AND...tomorrow, Bob's step-mother (Kitty) has surgery for hernia and gallstones.. Not to mention..my mom had oral surgery (and didn't tell me) a week before coming out here for my surgery. We keep wondering why we are so exhausted.. this is enough stress to wipe anyone out. I really love that we are all supporting each other so much, regardless of our individual circumstances... So please, if you think to pray for me today--lift up all of the others as well. Believe me..your prayers are needed and we can feel them. I am getting better every day and appreciate you all so much. Have a great Monday
Written Jan 27, 2013 7:17pm
Thank you everyone that has signed my Guestbook. I just took a few minutes and re-read through them again. Some of you I've never met..yet you are continuing to support me with prayer and concern. I can't tell you how touched I am for such thoughtful, wonderful people in my life. Just your few words of encouragement..to someone you never met..really lifts my spirits. I had a visit from a friend this afternoon..I'm certain it was uneventful for her..but it was good for me to feel kind of normal. Bob and I took a short walk..about 8 minutes or so, just down our street. I almost watched a whole movie with my mom..and somehow, the minutes turned to hours..and the day passed by. So now, the end of my 4th day post Chiari-decompression is drawing near..and I can not believe I'm already on the other side of this surgery. It was lurking just around the corner for so long..and now it's passed and I'm actually healing. No more waiting or looking for treatment.. Now, I just heal. That's my job. Rest and heal..and soak in all of the love that so many have been pouring out to me, well wishes and prayers on my behalf...from people that don't know me, whom I may never meet. So I guess, I am closing the day on a positive, warm, loving note. Does my head hurt? Yes.. Am I exhausted? Yes..Does it matter? No..not really. Because I know what ever tomorrow brings..I will be supported and loved..and that makes all the difference Thank you all so very much.
Written Jan 27, 2013 7:29am
I feel horrible. I can't describe this type of pain. I can't watch television or look at my phone for longer than a minute or two without sharp stabbing pains Every movement, no matter how small, causes pain. Bob and Mom have been wonderful.. And very quiet :-). My updates will not be very often and will most likely be very brief. Thanks for your continued prayers.
Saturday January 26-I can already tell my hearing loss is improved. Yay! My head hurts but it's a different kind of pain. We are all exhausted. Bob's brother -in-law had open heart surgery today, last report is that he is doing well. We have so much to be grateful for. I'm so glad to be home and to have Mom and Bob here with me. Thanks again everyone for your prayers.
Just a few hours post-op.
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