I have found a lovely support group for ACM and I've been in touch with some wonderful ladies and gentlemen who have helped me through so many things! Well today I opened an email today from another Chiarian(this is what people with ACM call others with ACM) and it said and I quote "We will never be normal so its great to get to know others with ACM so that we can depend on one another! Nobody knows how we feel!"
WOW, What to say in return! I believe we are normal just like everybody else, EVERYBODY I know has something wrong with them whether it be a head cold, ingrown toenails, stinky feet, diabetes, high blood pressure, cancer, diseases, etc... nobody is perfect except the one who created us! Everybody has bad days, grouchy days, suffering, pain, fear etc...without this the world would NOT know what compassion, love, understanding, and kindness was. I believe there are others that have it worse then some but I believe God made it that way so the healthier ones are there to help hold the others when they are down!
I am so glad I found this support group but at the same time each and every Chiarian is different just like each and every person is! :) So we should all enjoy life and love to the fullest...you never know whose day you are making better! So remember to Smile while your at it!
Wednesday, March 30, 2011
Wednesday, March 23, 2011
Life at 5 weeks
Five weeks ago today(March 23, 2011), I had surgery for ACM and things are FINALLY getting to be normal! This post is all over the place so be patient with me!
I am finally to the point where no more naps are needed during the day! I now have energy to make it a whole day without getting to exhausted!
Also at the last check up the doctor told me to exercise 3 days a week, to try to get everything back to normal...so I tried running on a treadmill last wed and this wed! Oh man was it fun...NOT! The pain was horrible, every step pulled at my scar and the pain from my brain feeling "beat up" was intense!
Ive noticed that since the surgery things things seem calmer to me, everything is so much easier to take in...things are beautiful that previously weren't and I love it!
Ive also noticed that my head is a little more sensitive then it was...for example(yawning hurts really bad, along with getting upset, and crying!) Hopefully within time things will become better!
On a positive note the surgery
-seems to have helped keep my migraines away
-seems to have helped my tingling and pain in my hands/feet
-has helped me to embrace the world and myself
-has improved my ability to think clearly again and my motor skills
I could think of many many more things but I want to keep this short ;)
I have complete hearing back in my ears again! As for my vision its still a little blurry but I can officially read with it again! I am now able to relax enough to get a couple hours of sleep each night which feels so good! I am still very sore and stiff but I can move and maneuver in ways I never knew I could! I thank god everyday for him giving me ACM because it has made me become so much closer with him, my family, friends, and myself!
Its seems almost a dream that 5 weeks ago today I had brain/neck surgery! I almost feel better then I did before the surgery! Aw its a great day! Spring is here, the flowers are blooming, and I feel wonderful!
I am finally to the point where no more naps are needed during the day! I now have energy to make it a whole day without getting to exhausted!
Also at the last check up the doctor told me to exercise 3 days a week, to try to get everything back to normal...so I tried running on a treadmill last wed and this wed! Oh man was it fun...NOT! The pain was horrible, every step pulled at my scar and the pain from my brain feeling "beat up" was intense!
Ive noticed that since the surgery things things seem calmer to me, everything is so much easier to take in...things are beautiful that previously weren't and I love it!
Ive also noticed that my head is a little more sensitive then it was...for example(yawning hurts really bad, along with getting upset, and crying!) Hopefully within time things will become better!
On a positive note the surgery
-seems to have helped keep my migraines away
-seems to have helped my tingling and pain in my hands/feet
-has helped me to embrace the world and myself
-has improved my ability to think clearly again and my motor skills
I could think of many many more things but I want to keep this short ;)
I have complete hearing back in my ears again! As for my vision its still a little blurry but I can officially read with it again! I am now able to relax enough to get a couple hours of sleep each night which feels so good! I am still very sore and stiff but I can move and maneuver in ways I never knew I could! I thank god everyday for him giving me ACM because it has made me become so much closer with him, my family, friends, and myself!
Its seems almost a dream that 5 weeks ago today I had brain/neck surgery! I almost feel better then I did before the surgery! Aw its a great day! Spring is here, the flowers are blooming, and I feel wonderful!
Monday, March 14, 2011
Eye Apt & Dr Apt
So I thought I would give everybody an update!
Things are improving and moving along relatively smooth! I had my last eye doctor apt on March 8th...Doctor Kay said that my vision has returned to 20/20 in both eyes..I am so excited about this! At the same time a little upset because I don't have my vision quite right yet, its still fuzzy and dark but the doctor said it will always be like that! I believe it will continue to heal, and if not its at least livable! God is so good, Ive been praying day and night for my eye to deal and then now its a ton better!
Today, March 14th, I had my last doctors appointment for the next 6 months. He said, "things are going well (except for the sleep)! and my incision looks great and etc."
I'm so thankful we don't have to make another trip down to Springfield anytime soon, its the most boring drive Ive ever traveled!
As for the sleep I still have yet to get a good nights sleep, the doctors put me on sleeping pills but I still have only got the max of 4 hours of sleep and that is just in the last two nights! My body seems to never want to shut down and then if it does, Ive been having HORIBLE nightmares! I am completely exhausted! Although, things have been fantastic lately! I have been able to clean some, cook some, take baths(my favorite!!!), and even take pictures! Its been so nice to get back into the routine of things!!
P.S. I am working on Thank You cards, dont think I forgot about all you guys! You have all been wonderful!
Things are improving and moving along relatively smooth! I had my last eye doctor apt on March 8th...Doctor Kay said that my vision has returned to 20/20 in both eyes..I am so excited about this! At the same time a little upset because I don't have my vision quite right yet, its still fuzzy and dark but the doctor said it will always be like that! I believe it will continue to heal, and if not its at least livable! God is so good, Ive been praying day and night for my eye to deal and then now its a ton better!
Today, March 14th, I had my last doctors appointment for the next 6 months. He said, "things are going well (except for the sleep)! and my incision looks great and etc."
I'm so thankful we don't have to make another trip down to Springfield anytime soon, its the most boring drive Ive ever traveled!
As for the sleep I still have yet to get a good nights sleep, the doctors put me on sleeping pills but I still have only got the max of 4 hours of sleep and that is just in the last two nights! My body seems to never want to shut down and then if it does, Ive been having HORIBLE nightmares! I am completely exhausted! Although, things have been fantastic lately! I have been able to clean some, cook some, take baths(my favorite!!!), and even take pictures! Its been so nice to get back into the routine of things!!
P.S. I am working on Thank You cards, dont think I forgot about all you guys! You have all been wonderful!
Saturday, March 5, 2011
Frustrated
I don't know what I had expected after this surgery but whatever it was this is not it! I truly thought I would be up and ready for the day right after surgery...guess I was wrong! The doctor told me this surgery wouldn't hurt any worse then a c section, I would have to say he was wrong, they both hurt bad just in different ways! That's the last time I trust a guy doctor to tell me about how a surgery thats done on a female feels!!
I feel extremely frustrated... its been 2 weeks and 3 days since the surgery and I have no energy 80 percent of the time, and in pain 90 percent the time. I put on a happy face and bare it because thats all I can do! Enjoy life and live, but I am tired of it all...I haven't slept in weeks for more then 2 hours a night(even then its not really sleep cux it hurts to lay down so bad). I just don't get it...it hurts to lay, hurts to stand, hurts to sit...well what am I to do! When is it going to get better?
Things HAVE improved a ton but cant all the pain just go away even for an hour! I want to clean my house, cook dinner, play with my kids, drive, and even paint my finger nails!
I'm tired of having a constant headache from my eye. My eye has improved from when we left the hospital but the more it gets better the worse i feel! There are times were I think it would be easier if it was black again, cux then I could have one good eye...but I am SO thankful god it allowing my sight to come back, I am just frustrated!
My hearing is improving tremulously also, I can hear alot out of my ear now, its 60/40, but ITS SO GOOD TO HEAR!
Who knew being completely trapped to your house could make you feel so awful! I love my family and love staying home with them but since I dont have the energy and cant really drive, we are stuck with each other all day in our tiny house(getting tinier everyday)! We are all going INSANE! No joke!
I feel extremely frustrated... its been 2 weeks and 3 days since the surgery and I have no energy 80 percent of the time, and in pain 90 percent the time. I put on a happy face and bare it because thats all I can do! Enjoy life and live, but I am tired of it all...I haven't slept in weeks for more then 2 hours a night(even then its not really sleep cux it hurts to lay down so bad). I just don't get it...it hurts to lay, hurts to stand, hurts to sit...well what am I to do! When is it going to get better?
Things HAVE improved a ton but cant all the pain just go away even for an hour! I want to clean my house, cook dinner, play with my kids, drive, and even paint my finger nails!
I'm tired of having a constant headache from my eye. My eye has improved from when we left the hospital but the more it gets better the worse i feel! There are times were I think it would be easier if it was black again, cux then I could have one good eye...but I am SO thankful god it allowing my sight to come back, I am just frustrated!
My hearing is improving tremulously also, I can hear alot out of my ear now, its 60/40, but ITS SO GOOD TO HEAR!
Who knew being completely trapped to your house could make you feel so awful! I love my family and love staying home with them but since I dont have the energy and cant really drive, we are stuck with each other all day in our tiny house(getting tinier everyday)! We are all going INSANE! No joke!
Wednesday, March 2, 2011
2nd day out/hearing!
My second time out of the house was a complete success (unlike my first wal-mart trip)!! I am so excited to say that I only got a little tired and sore from the outing with the kids and my mom and I had NO rude/heartless comments about my head! For those of you that don't know the story let me explain...while running into walmart a week or so after my surgery(my first outing) I had a lady tell me to and I quote "cover up your head cause that is the most disgusting thing ever, you should be ashamed"! I was so upset and in shock that it took 20 minutes for me to realize she was actually talking to me!
Any who today on my 2nd outing we went to a couple craft stores, big lots, and taco bell...and I made it back in one piece and not completely and utterly exhausted! Things are looking up:) Slowly, things are on the right track!
Oh and did I mention that my hearing is improving! I actually heard myself yawn yesterday:) Lol. Oh and today I could have sworn I heard myself singing but maybe its all in my head!
Any who today on my 2nd outing we went to a couple craft stores, big lots, and taco bell...and I made it back in one piece and not completely and utterly exhausted! Things are looking up:) Slowly, things are on the right track!
Oh and did I mention that my hearing is improving! I actually heard myself yawn yesterday:) Lol. Oh and today I could have sworn I heard myself singing but maybe its all in my head!
Tuesday, March 1, 2011
First Day With The Kiddos - ALONE
Failure :( Complete and utter failure! I thought I could manage the whole day with the kiddos but as it turned out I couldn't!
It all started out great, except a little "woke up on the wrong side of the bed syndrome" but nothing big! Things were going great until my little girl decided to pee all over our bed! This wasn't a normal pee, it was a huge catastrophic pee! It soaked thru the comforter to the pillows then on to the sheets then the rest of the bed! It was a disaster and the worse part was I couldn't bend over enough to get the stuff off the bed...so thankful for a helpful 4 year old!! He managed to pull them off the back side and I got the front side but then I was left with 5 loads of laundry! I was already exhausted from the bed issues and it wasn't even lunch time.
Then on to lunch I spilled a whole bowl of chicken noodle soup on the floor! What a mess!!
Nap Time was horrible, both kids fought it and then when my little girl decided to go to sleep, my "sweet little innocent big guy" woke her up! So nobody got a nap and EVERYBODY was in a horrible mood! Exhausted!! My hubby came to pick them up at 2, which is the first time I have been in my house without the kids for 2plus years! So all I ended up not resting and instead ended up thinking of what I could have been doing and getting done instead!
I am hoping tomorrow is a little more mild, normally this would just be a normal part of my everyday life, but I still dont have enough energy to handle all this! I hope I get my mommy strength back over night!
It all started out great, except a little "woke up on the wrong side of the bed syndrome" but nothing big! Things were going great until my little girl decided to pee all over our bed! This wasn't a normal pee, it was a huge catastrophic pee! It soaked thru the comforter to the pillows then on to the sheets then the rest of the bed! It was a disaster and the worse part was I couldn't bend over enough to get the stuff off the bed...so thankful for a helpful 4 year old!! He managed to pull them off the back side and I got the front side but then I was left with 5 loads of laundry! I was already exhausted from the bed issues and it wasn't even lunch time.
Then on to lunch I spilled a whole bowl of chicken noodle soup on the floor! What a mess!!
Nap Time was horrible, both kids fought it and then when my little girl decided to go to sleep, my "sweet little innocent big guy" woke her up! So nobody got a nap and EVERYBODY was in a horrible mood! Exhausted!! My hubby came to pick them up at 2, which is the first time I have been in my house without the kids for 2plus years! So all I ended up not resting and instead ended up thinking of what I could have been doing and getting done instead!
I am hoping tomorrow is a little more mild, normally this would just be a normal part of my everyday life, but I still dont have enough energy to handle all this! I hope I get my mommy strength back over night!
Staples are OUT!!
Woot Hoot! My staples got taken out Monday Feb 28! Oh how good it feels to see the sky again! I feel so free! I still have alot of stiffness in my neck but I have so much more range of motion now! I'm FREE!! AHHH!!!
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