Today was supposed to be a day of joy, happiness, and the announcing or our soon to be addition to the family. Yes, that's right we would have been 14 weeks pregnant today.
After many weeks of confusing ultrasounds the doctor finally told us Friday the we had no choice but to have an emergency D&C done that day the baby had no heartbeat and I had a severe infection that could kill me. I was not having any issues that would point to a miscarriage or any problems with this pregnancy so I was having a hard time adjusting to the news.
Today, should have been a amazing day but instead we are grieving the loss of what was supposed to be our miracle baby. I have been told that there were issues with my surgery that lead to some kind of infertility and I would probably not be able to produce or carry anymore children. So this pregnancy was quite the shock and we were thrilled to say the least!!
After 13 weeks and 4 days we thought we had made it! I am frustrated, angry, sad, depressed, and somehow I've seemed to make piece with it all. Weird right?
I didn't post this on here to get your pity or for you to feel bad for us, I posted this for others that may have this happen after surgery and needed support or a shoulder to lean on! I don't want you to treat me different or act like this is something that needs to be kept under the table! Miscarriages happen to every 1 out of 5 women they should be talked about and not be swept under the table! I am not ashamed of the fact that we lost our baby, and I'm not mad at anyone for not knowing what to say. So I wanted to say Thank you to all of you who have checked up on us and acknowledged the fact that this is real:) It means the world to me!
God has a plan for us all and even though you don't see it , its nothing you wont be able to handle! I know it may seem a little overwhelming because at this moment I feel very overwhelmed but remember there is always someone out there that is there for you! So reach out!
Tuesday, August 9, 2011
Migraines, how I hate you!!
What kind of migraines do you get? Ive been getting so many migraines lately I thought I would share what mine are like.
The start of a migraine to me begins with pounding, lots of pressure, and then intense pain. This intense pain limits me to do alot of things ,it feels like my brain is popping out my eyes and ears and do to that I cant get any relief because my head is actually swollen so I cant even lay down on a pillow with out any pain.
Once a migraine begins my only option is to try to ignore it and go on with my day keeping as busy as I can. If I let the migraine win and I relax like I want then the migraine gets to the point that I cant even be around people including my own kids and husband! I will do anything and everything to keep a migraine away no matter how tired or how incredibly painful it may be!
A full blown migraine to me is painful beyond words! Since surgery the migraines have become a lot less frequent but they are much more painful now then they used to be!! A full blown migraine begins just like the start of one and then blows up into extreme, extreme pain, swelling of the face, its hard to open my eyes, I cant be in any lighted areas, I become physically sick to my stomach, I get hot flashes/cold chills, and I can NOT stand to be near ANY noises( this includes the dryer, A/C, and dishwasher) also included are my kids and husband. This is why I try to fight the start of a migraine because this can hinder my life and time with my family! :(
I have medicine that I cant take but 3 out of 5 times its doesnt work so I just pray that today will be my day without a migraine! As of today 8/9/11 I have had a migraine everyday for 4 days from lunch time til I head for bed! Hopefully by the time I hit one year from surgery It will have all gone away!
The start of a migraine to me begins with pounding, lots of pressure, and then intense pain. This intense pain limits me to do alot of things ,it feels like my brain is popping out my eyes and ears and do to that I cant get any relief because my head is actually swollen so I cant even lay down on a pillow with out any pain.
Once a migraine begins my only option is to try to ignore it and go on with my day keeping as busy as I can. If I let the migraine win and I relax like I want then the migraine gets to the point that I cant even be around people including my own kids and husband! I will do anything and everything to keep a migraine away no matter how tired or how incredibly painful it may be!
A full blown migraine to me is painful beyond words! Since surgery the migraines have become a lot less frequent but they are much more painful now then they used to be!! A full blown migraine begins just like the start of one and then blows up into extreme, extreme pain, swelling of the face, its hard to open my eyes, I cant be in any lighted areas, I become physically sick to my stomach, I get hot flashes/cold chills, and I can NOT stand to be near ANY noises( this includes the dryer, A/C, and dishwasher) also included are my kids and husband. This is why I try to fight the start of a migraine because this can hinder my life and time with my family! :(
I have medicine that I cant take but 3 out of 5 times its doesnt work so I just pray that today will be my day without a migraine! As of today 8/9/11 I have had a migraine everyday for 4 days from lunch time til I head for bed! Hopefully by the time I hit one year from surgery It will have all gone away!
Wednesday, June 8, 2011
Holy Cow Its Been 16 weeks already!
Where has the time gone! It feels like I had surgery a just a month ago, wow!
Good news, I finally have a dumb bump back, you know the bone that is on the back of your head kinda pointy? Well its finally back! I'm guessing this means the swelling is going down finally!
16 weeks of ups and downs...I can truly say I am glad its over...now lets hope these next 16 weeks go just a tiny bit better! I still experience migraines but not nearly as much as before, and all my other symptoms have gone away! Whew feels good!
There are little things I cant do now that I could before surgery - for instance- I cant stand up to fast because it gives me a horrible migraine, I cant get stressed out and "handle it" anymore I feel like my head is going to explode! I can not have a arm or pillow around the bottom of my neck because it hurts like the dickens! I think that's about it:) So Id say its definitely on the up and up now!! So thankful for all the continued prayers!
Good news, I finally have a dumb bump back, you know the bone that is on the back of your head kinda pointy? Well its finally back! I'm guessing this means the swelling is going down finally!
16 weeks of ups and downs...I can truly say I am glad its over...now lets hope these next 16 weeks go just a tiny bit better! I still experience migraines but not nearly as much as before, and all my other symptoms have gone away! Whew feels good!
There are little things I cant do now that I could before surgery - for instance- I cant stand up to fast because it gives me a horrible migraine, I cant get stressed out and "handle it" anymore I feel like my head is going to explode! I can not have a arm or pillow around the bottom of my neck because it hurts like the dickens! I think that's about it:) So Id say its definitely on the up and up now!! So thankful for all the continued prayers!
Wednesday, May 11, 2011
On a Positive note :)
I feel like I need to write a post about all the good things since surgery....so here goes(There are many more then I put on here, these are just a few).
Before surgery, I was couch bound all day...I was in so much pain from the migrianes and left with no energy left. My house was a disaster cux I couldn't clean or stay on top of anything! Now after surgery my house stays clean and looks great! I am able to walk, run, listen to the radio, and even be around noise (most of the time) with out getting a migraine! Ive only had 6 migraines in 11 weeks where I WAS having numerous migraines a day. If you are a Chiarian you know how painful these headache are, so you know how much it means to me to say they are almost gone! Woot!
Before surgery, I could barely send out a text message or type on the computer because my fingers never seemed to listen to my brain. Now after surgery my fingers do what my brain tells them to do!
Before surgery, I was experiencing dizziness and numbness I'm my hands and feet, that is no longer the case! My hands and feet feel amazing!
After surgery there were weeks were I was averaging about 8 hours of sleep a week, and now I am happy to announce I am back up to 6-8 a night! WOOT HOOT! Now that is something to yell about!
I can breath better now, before I was having issues and now I seem to be fine!
I generally feel a ton better then I did before surgery...my body, brain, and mind. I feel new and I am loving it!
There are things that are still difficult but I really believe that it will all go back to normal as well, everything seems to be on the path to improving. I am positive and grateful that I had this surgery done! I feel like a better person, this has allowed me to see things in a different light. I Thank God everyday for the time he has granted me and I also thank him for ACM cux without it I wouldn't be who I am today.
If any one has ACM and would like to email me you can do so at TGreuel@consolidated.net. Anytime!
Before surgery, I was couch bound all day...I was in so much pain from the migrianes and left with no energy left. My house was a disaster cux I couldn't clean or stay on top of anything! Now after surgery my house stays clean and looks great! I am able to walk, run, listen to the radio, and even be around noise (most of the time) with out getting a migraine! Ive only had 6 migraines in 11 weeks where I WAS having numerous migraines a day. If you are a Chiarian you know how painful these headache are, so you know how much it means to me to say they are almost gone! Woot!
Before surgery, I could barely send out a text message or type on the computer because my fingers never seemed to listen to my brain. Now after surgery my fingers do what my brain tells them to do!
Before surgery, I was experiencing dizziness and numbness I'm my hands and feet, that is no longer the case! My hands and feet feel amazing!
After surgery there were weeks were I was averaging about 8 hours of sleep a week, and now I am happy to announce I am back up to 6-8 a night! WOOT HOOT! Now that is something to yell about!
I can breath better now, before I was having issues and now I seem to be fine!
I generally feel a ton better then I did before surgery...my body, brain, and mind. I feel new and I am loving it!
There are things that are still difficult but I really believe that it will all go back to normal as well, everything seems to be on the path to improving. I am positive and grateful that I had this surgery done! I feel like a better person, this has allowed me to see things in a different light. I Thank God everyday for the time he has granted me and I also thank him for ACM cux without it I wouldn't be who I am today.
If any one has ACM and would like to email me you can do so at TGreuel@consolidated.net. Anytime!
Friday, May 6, 2011
11 weeks and counting!
Sorry that there haven't been any updates in a while! Everything has been a bit overwhelming so I felt the need to take a step back for awhile.
It has been 11 weeks since surgery and I can honestly say I feel a ton better then I did before!
I am not gonna sugar coat this tho, the reason I needed to take a step back is because things seemed to be going back to the way they were before surgery a bit.
1-Ive started to have migraines again...not like before but they seem to be worse then they were before at least for now, they leave me completely...completely couch potato material. I have only had 6 migraines so far and only 4 of them have been in a row, so I am still blessed to have had such little in 11 weeks!
2-The pressure that builds in my head when storms come is unreal, the doctor says its normal to have increased pain and pressure the day before,during, and after a storm. I guess I am the weather guru right now seeing that I can feel the rain before it gets here. After all the storms lately I am so so ready for all the nice weather to get here so I can stop feeling like poo! Arent we all ready for nice weather!?
3-I feel better then before surgery but I still feel like crud most day...or should I say not normal, not like myself...its been hard to adjust to...everybody expects me to be 100 percent better(including me) and its not happening. Big let down there!
4. Headlights at dark still seem to affect me alot except Its become almost unbearable, guess there is a trip to the eye doctor sooner then we thought!
Now on an upper note ...I have met some FANTASTIC people who I am so grateful god has allowed me to find! (To you girls that sat around the table and listened to me....I thank you all so much!)
Things have been going well besides the 1,2,3&4 (lol) like my hair has grown back 3 inches! It looks insane! My scar is still sensitive but looks really good! My head only hurts 30 percent of the time! :) I can hear and see again so the whole world is a ton better lol.
Thank you all for reading, praying, and keeping me in your thoughts! God has gave me so much strength through all this, I feel like I could tackle the world right now!
I wont be getting on here weekly for updates anymore unless something changes but I will try to update monthly for all you ACM people!
It has been 11 weeks since surgery and I can honestly say I feel a ton better then I did before!
I am not gonna sugar coat this tho, the reason I needed to take a step back is because things seemed to be going back to the way they were before surgery a bit.
1-Ive started to have migraines again...not like before but they seem to be worse then they were before at least for now, they leave me completely...completely couch potato material. I have only had 6 migraines so far and only 4 of them have been in a row, so I am still blessed to have had such little in 11 weeks!
2-The pressure that builds in my head when storms come is unreal, the doctor says its normal to have increased pain and pressure the day before,during, and after a storm. I guess I am the weather guru right now seeing that I can feel the rain before it gets here. After all the storms lately I am so so ready for all the nice weather to get here so I can stop feeling like poo! Arent we all ready for nice weather!?
3-I feel better then before surgery but I still feel like crud most day...or should I say not normal, not like myself...its been hard to adjust to...everybody expects me to be 100 percent better(including me) and its not happening. Big let down there!
4. Headlights at dark still seem to affect me alot except Its become almost unbearable, guess there is a trip to the eye doctor sooner then we thought!
Now on an upper note ...I have met some FANTASTIC people who I am so grateful god has allowed me to find! (To you girls that sat around the table and listened to me....I thank you all so much!)
Things have been going well besides the 1,2,3&4 (lol) like my hair has grown back 3 inches! It looks insane! My scar is still sensitive but looks really good! My head only hurts 30 percent of the time! :) I can hear and see again so the whole world is a ton better lol.
Thank you all for reading, praying, and keeping me in your thoughts! God has gave me so much strength through all this, I feel like I could tackle the world right now!
I wont be getting on here weekly for updates anymore unless something changes but I will try to update monthly for all you ACM people!
Wednesday, April 13, 2011
Wow 8 weeks!
Its been 8 weeks since I welcomed surgery all the joys, fears and frustrations that it has brought me and my new life! I am proud to say life is BETTER then it has been in a long time! I have not had a full blown migraine, numbness, or speaking problems...So far it seems like the surgery is working out just fine!
I refer to my brain as the "New Brain" I mean it does feel completely different then what it did in the past. I guess there still is alot to get used to from all the pressure and swelling! I still have pain and am fighting to get past the small things in life but the small things are small things in life for a reason! So who cares! If thats all the pain that I have to experience my whole life or for awhile then so be it! I am a new women and thrilled to be!
Everyday is a miracle to me now a experience that I have been given and will cherish!! God sure does have a way of opening your eyes right when you need it the most! Who would have guessed that 8weeks ago I would have to have a life altering surgery just to bring me closer to the ones I love! I believe every piece of what you go there is for a divine reason whether you can see it or not!
For all you Charians out there life is only how you make it! If you let the pain take over you it will consume you and take all you have! So don't give up because there are people out there that have had good experiences with surgery!
I refer to my brain as the "New Brain" I mean it does feel completely different then what it did in the past. I guess there still is alot to get used to from all the pressure and swelling! I still have pain and am fighting to get past the small things in life but the small things are small things in life for a reason! So who cares! If thats all the pain that I have to experience my whole life or for awhile then so be it! I am a new women and thrilled to be!
Everyday is a miracle to me now a experience that I have been given and will cherish!! God sure does have a way of opening your eyes right when you need it the most! Who would have guessed that 8weeks ago I would have to have a life altering surgery just to bring me closer to the ones I love! I believe every piece of what you go there is for a divine reason whether you can see it or not!
For all you Charians out there life is only how you make it! If you let the pain take over you it will consume you and take all you have! So don't give up because there are people out there that have had good experiences with surgery!
Wednesday, March 30, 2011
Support Group ?'s Normal
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!
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 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!!!
Friday, February 25, 2011
Itching!! I'm going crazy here!
This is a pretty light hearted post but whose ever idea was it to have things itch when they are healing!
I feel like my staples are going to drive me up the wall...its all I can do not to itch them!
My hubby actually found me watching TV rubbing my hand on them and told me I was worse then a dog! HAHA. I didn't even realize I was scratching at them but man they are extremely irritating! I'm starting to feel much like a dog who might have fleas! Those poor animals and what they have to go threw! Hey if your dog has fleas...yes you...please treat them for me:) Much appreciated!
I feel like my staples are going to drive me up the wall...its all I can do not to itch them!
My hubby actually found me watching TV rubbing my hand on them and told me I was worse then a dog! HAHA. I didn't even realize I was scratching at them but man they are extremely irritating! I'm starting to feel much like a dog who might have fleas! Those poor animals and what they have to go threw! Hey if your dog has fleas...yes you...please treat them for me:) Much appreciated!
Newest update - Pressure
Things have been going great, over the last few days my body has been building so much energy and allowing me to maneuver a bit more each day, I was feeling great!!
Until Feb 24th, when I started to get a slight headache, felt like I had pressure from a cold coming on so I decided I was going to lay down and nap but when I awoke from nap time I had lost most hearing in my left ear and was experiencing alot of pressure behind my eyes, ears, and nose! It was truly unbearable and left me exhausted and in bed the rest of the evening!
The next morning was relatively the same but I had lost almost complete hearing in my left ear and my right ear was starting to get stuffy, along with a little blur in my left eye(right eye is my hurt one). Calling the doctor at this point seemed like a must! After a very long morning trying to get into the doctor we got an apt set up for Monday morning with the neurosurgeon and we went to the family doctor today. We found out that there is alot of pressure built up behind my ears causing fluid and my ear drums to sink in which is causing the ear loss. The doctor said that if the pressure in my ears and especially eyes get worse we will need to get to the ER immediately and they will take further action of sending me to Springfield.
I am having a hard couple of days, I cant believe how hard it is to have little hearing and vision! It effects everything! I am experiencing new feeling towards deaf and blind people even tho I am no were near that I admire what they go threw on a daily basis! What strong people they must all be!! I feel blessed that this is all that is going wrong there are so many things I have to be thankful for right now!
Until Feb 24th, when I started to get a slight headache, felt like I had pressure from a cold coming on so I decided I was going to lay down and nap but when I awoke from nap time I had lost most hearing in my left ear and was experiencing alot of pressure behind my eyes, ears, and nose! It was truly unbearable and left me exhausted and in bed the rest of the evening!
The next morning was relatively the same but I had lost almost complete hearing in my left ear and my right ear was starting to get stuffy, along with a little blur in my left eye(right eye is my hurt one). Calling the doctor at this point seemed like a must! After a very long morning trying to get into the doctor we got an apt set up for Monday morning with the neurosurgeon and we went to the family doctor today. We found out that there is alot of pressure built up behind my ears causing fluid and my ear drums to sink in which is causing the ear loss. The doctor said that if the pressure in my ears and especially eyes get worse we will need to get to the ER immediately and they will take further action of sending me to Springfield.
I am having a hard couple of days, I cant believe how hard it is to have little hearing and vision! It effects everything! I am experiencing new feeling towards deaf and blind people even tho I am no were near that I admire what they go threw on a daily basis! What strong people they must all be!! I feel blessed that this is all that is going wrong there are so many things I have to be thankful for right now!
Tuesday, February 22, 2011
The Famous "EYE"
You all have heard alot of talk about the famous eye issues Ive been having, I thought I would explain it a little more in depth so you all understand a little better.
I woke up from surgery, with the worst pain I had ever felt but not from the back of my head from my eye! The pain was worse then labor, surgery pain, and all the in between it was so intense I couldn't open my eyes(both) at all so I lived in couple darkness for days after the surgery and so did my parents and hubby(I feel so sorry for them)!! We had many doctors, nurses, anesthesiologist, and eye doctors look at my eye, then they prescribed me an extra dose of pain medicine and eye drops...they all had no clue what it was except they believed it was a scratch due to having my eye open during surgery...later we would find out they DID know what it was!!
On the day I was released from the hospital the pain from my eye was almost completely gone and I could open both eyes, still with little vision but it was definitely a step up! This was a gift from GOD!
We had a apt with Dr. Kay, Today, Tuesday Feb 22nd at 7:40am. After 6days after my surgery and I still have yet to regain vision in the eye(well I can see shapes and colors-but not defined edges and letters etc)the hubby and I really wanted answers! Since the right eye is my dominate eye and this is the eye that is hurt it makes life very difficult most days...I feel very sea sick all day, its difficult to move, walk and talk, even type, read, and alot of other issues!
Dr Kay studied to be a neurologist - which we were very surprised about, he knew all about my surgery a due to this fact and what they had to do and what caused my eye issues. They dropped some dye into my eye and there was no scratches or irritation that he could see they even brought in a second guy to look at it and nothing was there. There was nothing wrong with my eye, but I cant see out of it!? What is going on!? I just don't understand! This is were is was great that he studied to be a neurologist because he was able to explain the surgery and how if to much pressure is built up on one side of the brain(ex.left side of the brain would effect the right eye, etc.) during the decompression, you will lose your eye sight on the other side of your head. Dr Kay has seen a couple cases like mine and they are completely blind in the eye, he said since I did not lose my vision there is a chance it will recover which he is praying for but if it doesn't I will never receive it back and there will be nothing he can do to help like contacts, or glasses since its a neurological issue. He words were I am lucky to be alive, and this is all that the surgery effected.
All surgeries have risks and etc so I am not one bit mad at the doctors for my eye issues, I am upset because there is a chance that it will never recover and I am worried I will have to feel like this forever, but God never gives anyone something they cant handle...so I'm OK with it and calm, so far God has keep me away from walking into 90 percent of the walls and doors and I haven't had any serious issues due to my eye. So far the surgery has been a success, So as of now I am thankful for the life I live and the people I get to share it with!! Thank you all for all the prayers! We had a rough couple of days and then one night at 3am something switched and things turned for the positive! Thank you all!!WE LOVE YOU!
I woke up from surgery, with the worst pain I had ever felt but not from the back of my head from my eye! The pain was worse then labor, surgery pain, and all the in between it was so intense I couldn't open my eyes(both) at all so I lived in couple darkness for days after the surgery and so did my parents and hubby(I feel so sorry for them)!! We had many doctors, nurses, anesthesiologist, and eye doctors look at my eye, then they prescribed me an extra dose of pain medicine and eye drops...they all had no clue what it was except they believed it was a scratch due to having my eye open during surgery...later we would find out they DID know what it was!!
On the day I was released from the hospital the pain from my eye was almost completely gone and I could open both eyes, still with little vision but it was definitely a step up! This was a gift from GOD!
We had a apt with Dr. Kay, Today, Tuesday Feb 22nd at 7:40am. After 6days after my surgery and I still have yet to regain vision in the eye(well I can see shapes and colors-but not defined edges and letters etc)the hubby and I really wanted answers! Since the right eye is my dominate eye and this is the eye that is hurt it makes life very difficult most days...I feel very sea sick all day, its difficult to move, walk and talk, even type, read, and alot of other issues!
Dr Kay studied to be a neurologist - which we were very surprised about, he knew all about my surgery a due to this fact and what they had to do and what caused my eye issues. They dropped some dye into my eye and there was no scratches or irritation that he could see they even brought in a second guy to look at it and nothing was there. There was nothing wrong with my eye, but I cant see out of it!? What is going on!? I just don't understand! This is were is was great that he studied to be a neurologist because he was able to explain the surgery and how if to much pressure is built up on one side of the brain(ex.left side of the brain would effect the right eye, etc.) during the decompression, you will lose your eye sight on the other side of your head. Dr Kay has seen a couple cases like mine and they are completely blind in the eye, he said since I did not lose my vision there is a chance it will recover which he is praying for but if it doesn't I will never receive it back and there will be nothing he can do to help like contacts, or glasses since its a neurological issue. He words were I am lucky to be alive, and this is all that the surgery effected.
All surgeries have risks and etc so I am not one bit mad at the doctors for my eye issues, I am upset because there is a chance that it will never recover and I am worried I will have to feel like this forever, but God never gives anyone something they cant handle...so I'm OK with it and calm, so far God has keep me away from walking into 90 percent of the walls and doors and I haven't had any serious issues due to my eye. So far the surgery has been a success, So as of now I am thankful for the life I live and the people I get to share it with!! Thank you all for all the prayers! We had a rough couple of days and then one night at 3am something switched and things turned for the positive! Thank you all!!WE LOVE YOU!
Monday, February 21, 2011
Surgery day
Barely any nerves and only hours til the surgery...I got up around 3:30am and did my hair, makeup, and got all beautified! In know...I know... but I was extremely bored and my hubby was sleeping! So I got all ready in the dark and then laid in bed til 4:45 til it was time to wake the husband for the days adventure!
5am we are a little late to surgery...how could I ever have guess that! I'm married a man that is late for everything!!! We finally arrived at St. Johns Hospital in Springfield, IL for the surgery (with my parents joining us) we all visited until it was time to go up to the surgical floor!
Around 5:30 we got called up to the Surgical floor and brought into a room were we had to sit til 7:30 til we saw anybody that was anybody! We meet with nurses and doctors, and more nurses, and admissions registrations, and more doctors until I was finally all IV'd up and until they had all the information they needed! This was it! It was TIME! Oh boy was I still ok...wait a minute "aren't I supposed to be freaking out and nervous because if I am I'm not!"
The adventure began I was wheeled back by two really nice nurses, whom we all share the same month birthdays lol...a bit random I know! Any who, one nurse was a guy and he had the most gorgeous eyes! These blue eyes that had huge dark lining on the outside and inside and he never left me eye sight he was the last thing/person I saw, very calming(I think GOD knew I needed it) THANK YOU!
What must have been hours later...I remember waking in a freezing cold room with alot of other people moaning and crying for pain pills.(must be a huge room for surgical patients) I was stuck there in severe pain with no voice and strapped to a bed and I couldn't open my eyes due to extreme eye pain! I cried and cried until I must have made my blood pressure drop because within seconds there where tons of hands on me and voices, and I could hear them calling my hubby and telling them I would be going to ICU - 5or6 hours after being stuck in that room I finally got admitted into the ICU!!! I still couldn't see or control my pain, I slept what seemed like days and don't remember to much of anything except some random parts of people talking! The next day after surgery was about the same, miserable, painful, partially blind, and sick to my stomach! I will try to get another post up soon but this one has taken me most of the day to get up so be patient with me:)
If you scroll down to the bottom of the page there is a picture of my incision sight 2 days after surgery! Got to keep most my hair!
5am we are a little late to surgery...how could I ever have guess that! I'm married a man that is late for everything!!! We finally arrived at St. Johns Hospital in Springfield, IL for the surgery (with my parents joining us) we all visited until it was time to go up to the surgical floor!
Around 5:30 we got called up to the Surgical floor and brought into a room were we had to sit til 7:30 til we saw anybody that was anybody! We meet with nurses and doctors, and more nurses, and admissions registrations, and more doctors until I was finally all IV'd up and until they had all the information they needed! This was it! It was TIME! Oh boy was I still ok...wait a minute "aren't I supposed to be freaking out and nervous because if I am I'm not!"
The adventure began I was wheeled back by two really nice nurses, whom we all share the same month birthdays lol...a bit random I know! Any who, one nurse was a guy and he had the most gorgeous eyes! These blue eyes that had huge dark lining on the outside and inside and he never left me eye sight he was the last thing/person I saw, very calming(I think GOD knew I needed it) THANK YOU!
What must have been hours later...I remember waking in a freezing cold room with alot of other people moaning and crying for pain pills.(must be a huge room for surgical patients) I was stuck there in severe pain with no voice and strapped to a bed and I couldn't open my eyes due to extreme eye pain! I cried and cried until I must have made my blood pressure drop because within seconds there where tons of hands on me and voices, and I could hear them calling my hubby and telling them I would be going to ICU - 5or6 hours after being stuck in that room I finally got admitted into the ICU!!! I still couldn't see or control my pain, I slept what seemed like days and don't remember to much of anything except some random parts of people talking! The next day after surgery was about the same, miserable, painful, partially blind, and sick to my stomach! I will try to get another post up soon but this one has taken me most of the day to get up so be patient with me:)
If you scroll down to the bottom of the page there is a picture of my incision sight 2 days after surgery! Got to keep most my hair!
Pre-op
So on Tuesday Feb 15th we drove down to Springfield for our pre admissions apt(which was pointless)! They make you drive 2 hours down there and then you only have 3 blood samples and a urine sample!! Ridiculous, the hubby and I were left with hours to do until hotel check in and sun down!! WHAT TO DO!
Well since the previous day was Valentines day and we didn't celebrate it we decided that we would just for something to do. This was the first night without both kids EVER so we decided we are going to celebrate Valentines day! We started the night out with me getting a facial and makeover at the spa down there..I fell so in love with bare escentuals I decided that was my bday present to myself this year(I purchased the starter kit)!! YAY!
Anyway the night was kinda a blur we went to numerous shops and stores and bought things we never thought we would need, along with NEW shoes this is the only shopping I love to do... I love shoes! Then we moved along to dinner,drinks and more shopping! This was the best most relaxing evening ever! We wanted it to be perfect and something we have never down so we drove and visited a couple stores downtown(amazing) and a candy store. We were going to do the romantic thing like Ice skating, strawberries and wine, but I felt it was rather boring to not be out and about the night before my surgery(plus I was worried Id fall and end up hurting the next day even worse) So we ended up shopping and having a fantastic time! What a great husband I have! I feel so blessed!
Now sleep was very little this night...we sat in the hotel room for hours and tried to wear out nothing worked so around midnight or so my hubby started snoring so I decided to play tricks on him! This is what happens when you fall asleep before the surgery victim(oh and true love ha ha)!
Anyway, I finally fell sleep but woke up every 15 minutes til around 3am when I couldn't get to sleep so I got up did my hair, makeup, etc(like you really need to look good for surgery) Continued to Surgery day post....
Well since the previous day was Valentines day and we didn't celebrate it we decided that we would just for something to do. This was the first night without both kids EVER so we decided we are going to celebrate Valentines day! We started the night out with me getting a facial and makeover at the spa down there..I fell so in love with bare escentuals I decided that was my bday present to myself this year(I purchased the starter kit)!! YAY!
Anyway the night was kinda a blur we went to numerous shops and stores and bought things we never thought we would need, along with NEW shoes this is the only shopping I love to do... I love shoes! Then we moved along to dinner,drinks and more shopping! This was the best most relaxing evening ever! We wanted it to be perfect and something we have never down so we drove and visited a couple stores downtown(amazing) and a candy store. We were going to do the romantic thing like Ice skating, strawberries and wine, but I felt it was rather boring to not be out and about the night before my surgery(plus I was worried Id fall and end up hurting the next day even worse) So we ended up shopping and having a fantastic time! What a great husband I have! I feel so blessed!
Now sleep was very little this night...we sat in the hotel room for hours and tried to wear out nothing worked so around midnight or so my hubby started snoring so I decided to play tricks on him! This is what happens when you fall asleep before the surgery victim(oh and true love ha ha)!
Anyway, I finally fell sleep but woke up every 15 minutes til around 3am when I couldn't get to sleep so I got up did my hair, makeup, etc(like you really need to look good for surgery) Continued to Surgery day post....
Saturday, February 12, 2011
Countdown!
The countdown is on...we will be leaving for our adventure on Tuesday.
I am so blessed to have such a wonderful support team, family, friends, etc...I appreciate you all so much for everything you guys are doing! Thank you all so much! I truly am blessed!
The nerves haven't set in yet...Ive been so busy getting everything ready....I have confided me and the kids to the house till it gets finished! Who knew there was so much to do and get ready, just to go away for a couple days! A tiny bit overwhelming! To all you vacationers out there I give kudos to you all!
The countdown is on only a couple days til Surgery and loss of hair :( Please pray I don't knock the person out shaving my head...Pray I am a "Big girl about it!"
I am so blessed to have such a wonderful support team, family, friends, etc...I appreciate you all so much for everything you guys are doing! Thank you all so much! I truly am blessed!
The nerves haven't set in yet...Ive been so busy getting everything ready....I have confided me and the kids to the house till it gets finished! Who knew there was so much to do and get ready, just to go away for a couple days! A tiny bit overwhelming! To all you vacationers out there I give kudos to you all!
The countdown is on only a couple days til Surgery and loss of hair :( Please pray I don't knock the person out shaving my head...Pray I am a "Big girl about it!"
Does it make me wierd
Does it make me wierd if I worry more about them saving my hair and being bored after the surgery then the actual surgery? Im actually afraid I might throw a fit and cry like a baby when they try to shave it off.
Friday, February 4, 2011
12 days til surgery!
Wow 12 days til the surgery and my nerves are already shot! I am so anxious for the surgery to get here and to get it out of the way! I am full of mixed emotions right now due to a awesome last couple of days! I have had 5 days with barely any migraine, pain, or sleep! Maybe the lack of sleep is keeping my brain fresh:) Heck if I know but for some reason it has been an awesome 5 days in which my house is almost completely clean and organized! It must be God's way of telling me to do what needs to be done and leave the rest to him! Leave my worries behind and trust in him!
Thursday, January 27, 2011
Being Normal & Surgery Scheduled
Today all I wanted to do was be NORMAL, get out of the house and grocery shop and be like everybody else(no migraines, no pain, no stares, no whispers)! So me and the kids took an adventure to the school supply store and was that a mistake! The kids and I were in the store no longer then 15 minutes when my little girl decided to pee on the floor and my big guy decided to knock over a turn table! I wanted to be normal because why??? LOL...you gotta love kids!
Getting to the point of the story, ever since we were told about the surgery on Monday I feel disconnected from the world(except for a few WONDERFUL people). I feel like people look at me like I'm fragile and are contagious! I DO NOT have the plague people! I am not contagious and I will not fall apart by just looking at me! Yes, I have a Malformation in my brain but I am really just exactly like you and really miss being treated like one of you! Sorry for the rant just had to get that out!
Chiari Malformation is were part of your brain has extended into the spinal canal and is blocking fluid from flowing correctly to your spine. My brain is blocking most of the fluid from exiting and entering the brain(traveling) so most of the fluid is trapped in my brain or neck, causing pain, symptoms, and migraines due to the pressure built up in my brain and neck. I hope this helps you all understand it a little better, its not something you are going to catch by looking at me or touching me, I promise! I was born with this, but just currently started having more symptoms from it due to the increase in pressure. Here is a great website to read about it if you would like to know more...http://www.chiariinstitute.com/chiari_malformation.html
I also got a phone call today from the surgery staff my surgery is scheduled for February 16th, 2011 at 7am! Hoping everything will be lined up and figured out before then!
Getting to the point of the story, ever since we were told about the surgery on Monday I feel disconnected from the world(except for a few WONDERFUL people). I feel like people look at me like I'm fragile and are contagious! I DO NOT have the plague people! I am not contagious and I will not fall apart by just looking at me! Yes, I have a Malformation in my brain but I am really just exactly like you and really miss being treated like one of you! Sorry for the rant just had to get that out!
Chiari Malformation is were part of your brain has extended into the spinal canal and is blocking fluid from flowing correctly to your spine. My brain is blocking most of the fluid from exiting and entering the brain(traveling) so most of the fluid is trapped in my brain or neck, causing pain, symptoms, and migraines due to the pressure built up in my brain and neck. I hope this helps you all understand it a little better, its not something you are going to catch by looking at me or touching me, I promise! I was born with this, but just currently started having more symptoms from it due to the increase in pressure. Here is a great website to read about it if you would like to know more...http://www.chiariinstitute.com/chiari_malformation.html
I also got a phone call today from the surgery staff my surgery is scheduled for February 16th, 2011 at 7am! Hoping everything will be lined up and figured out before then!
Tuesday, January 25, 2011
Neurosurgern Apt
After a month of waiting to see Dr. Cozzens the Neurosurgeon appointment was finally here! Nervous as heck me and my hubby drove to Springfield to see what this new part of our life would bring!
First I had to pass a neuro exam, which I had to take twice due to my big mistake of mixing up left and right! LOL. Then we got to meet the specialist Dr. Cozzens, he was the kind of Dr that you knew would do anything in his power to save you, just by meeting with him! WE instantly decided to stay with this doctor instead of finding a 4th opinion, it feels right and he really knows his stuff! He has dealt with over 1000's of cases of Chiari Malformation and has only operated on just over a 400 of them. For those of you that don't know there are around 300,000 Chiari Malformation cases known in the USA, which seems like alot but its out of ALL the people in the USA! Its considered a rare disease, but they are seeing it more and more these days.
Any who after looking at the MRI and going threw my past experiences and future symptoms the Doc told us that Surgery, he felt was a necessity for me and that my symptoms would continue to worsen from the pressure in my head! (Let me tell you what was going threw my head, here I am sitting on a bed talking to a doc I just meet with a Skull in his hand explaining the procedure to my husband and I. While I am silently freaking out! I really thought that he was gonna say "Here is your new medicine this will solve all your problems and we will see you in a year", looking at my husband I knew he had thought just what I had). The doctor stayed in the room with us for almost an hour explaining it all and tell us the chances and risks of the surgery.
We feel alot better about the surgery knowing the procedure and feeling that God is control of Dr. Cozzens hands!! Yes, we are a little scared...I mean after all it is a brain surgery!! After the decompression surgery, we will have to stay in the hospital for 2-4 days depending on how surgery goes and then I will be physically done for close to a week, then I can not heavy lift for 3 weeks and the recovery time takes up to a year to recover to your original self.
After making the a very tough decision the hubby and I decided that we would schedule surgery for the week of Feb 16. Meanwhile I will have to have another MRI on Wed. of my neck to make sure that I don't have Syringomyelia. If that is the case and we do have it then we have no choice at all on the surgery, and then the surgery will be a little more risking but have the same outcome. Until surgery I plan to really enjoy life, and celebrate my little girls 2 birthday! I have a feeling these next couple weeks are going to drag by slowly!
I am sorry if I have not returned your phone calls, texts, emails but I really needed a night to let it sink in, if you have any questions I can definitely try to help you understand it through what we have been given.
First I had to pass a neuro exam, which I had to take twice due to my big mistake of mixing up left and right! LOL. Then we got to meet the specialist Dr. Cozzens, he was the kind of Dr that you knew would do anything in his power to save you, just by meeting with him! WE instantly decided to stay with this doctor instead of finding a 4th opinion, it feels right and he really knows his stuff! He has dealt with over 1000's of cases of Chiari Malformation and has only operated on just over a 400 of them. For those of you that don't know there are around 300,000 Chiari Malformation cases known in the USA, which seems like alot but its out of ALL the people in the USA! Its considered a rare disease, but they are seeing it more and more these days.
Any who after looking at the MRI and going threw my past experiences and future symptoms the Doc told us that Surgery, he felt was a necessity for me and that my symptoms would continue to worsen from the pressure in my head! (Let me tell you what was going threw my head, here I am sitting on a bed talking to a doc I just meet with a Skull in his hand explaining the procedure to my husband and I. While I am silently freaking out! I really thought that he was gonna say "Here is your new medicine this will solve all your problems and we will see you in a year", looking at my husband I knew he had thought just what I had). The doctor stayed in the room with us for almost an hour explaining it all and tell us the chances and risks of the surgery.
We feel alot better about the surgery knowing the procedure and feeling that God is control of Dr. Cozzens hands!! Yes, we are a little scared...I mean after all it is a brain surgery!! After the decompression surgery, we will have to stay in the hospital for 2-4 days depending on how surgery goes and then I will be physically done for close to a week, then I can not heavy lift for 3 weeks and the recovery time takes up to a year to recover to your original self.
After making the a very tough decision the hubby and I decided that we would schedule surgery for the week of Feb 16. Meanwhile I will have to have another MRI on Wed. of my neck to make sure that I don't have Syringomyelia. If that is the case and we do have it then we have no choice at all on the surgery, and then the surgery will be a little more risking but have the same outcome. Until surgery I plan to really enjoy life, and celebrate my little girls 2 birthday! I have a feeling these next couple weeks are going to drag by slowly!
I am sorry if I have not returned your phone calls, texts, emails but I really needed a night to let it sink in, if you have any questions I can definitely try to help you understand it through what we have been given.
Wednesday, January 19, 2011
Janurary 19, 2011
The past weeks have been worse then the previous! I had 5 days without a migraine and then bam they hit again and worse then before! I have almost no energy to do anything..I use all my energy cleaning up and watching the kids then I find myself ready to hit the sack early! I am so thankful for an awesome hubby! He has taken care of most of the daily chores, which is huge in my book, cuz i know when he comes home he is tired and would LOVE for nothing more then to sit down! I am also very thankful for the medicines that allow me to feel normal enough to get out an about! Even tho I don't feel good, life still goes on and you still have to LIVE!!
Today I woke up early and cleaned the house!! You might think this is a small thing but the last week or so I find this a big task! Everyday, I feel like I worked out and my whole body hurts, my shoulders, my back, legs, arms, it hurts to breath, sneeze or cough! I am doing better with migraines tho, I am only experiencing one a day now which i can handle!! Although, I don't like the neck pain that I have been having for a week and the pressure behind my eyes and ears makes my head kill all day! Other then that tho life it great! I am very thankful that my kids can entertain themselves and love movies!! We have a apt with Dr Cozzens- a neurosurgeon in Springfield,IL to see what the next step is!! I was told surgery was to be expected but there are many people with ACM that have not had to surgery so we are praying that it will not be necessary and that I can find a way to live with ACM with out it!
Today I woke up early and cleaned the house!! You might think this is a small thing but the last week or so I find this a big task! Everyday, I feel like I worked out and my whole body hurts, my shoulders, my back, legs, arms, it hurts to breath, sneeze or cough! I am doing better with migraines tho, I am only experiencing one a day now which i can handle!! Although, I don't like the neck pain that I have been having for a week and the pressure behind my eyes and ears makes my head kill all day! Other then that tho life it great! I am very thankful that my kids can entertain themselves and love movies!! We have a apt with Dr Cozzens- a neurosurgeon in Springfield,IL to see what the next step is!! I was told surgery was to be expected but there are many people with ACM that have not had to surgery so we are praying that it will not be necessary and that I can find a way to live with ACM with out it!
New year! New beginnings!
2011!! Its 2011!! This year is gonna be fantastic, a year for new beginnings, friendships, unyielding faith and much more!
ACM has gave me more insight to my life then I have ever known, and boy am I gonna grab hold and enjoy the ride!
ACM has gave me more insight to my life then I have ever known, and boy am I gonna grab hold and enjoy the ride!
Xmas holidays!
After finding out about ACM(Arnold Chiari Malformation) I had another week full of migraines that made me pretty much a couch potato and the kids got to watch more movies then they EVER have! I found myself thinking Christmas is soon approaching and I have to get up and get better! NO CHOICE! After 3 weeks of numerous migraines a day I was ready for it to be over!!
It was great to see everybody at Christmas but even if I looked good at Christmas it was all I could do to make it through each gathering, by the time I got home I was wiped and my migraine meds had left me sick to my stomach so I either took a nap or slept it off! I am so thankful for family and friends but I am SO THANKFUL the holidays are over! Although, Christmas was a great day!! I had woke up with no migraine and got to spend the morning with my kids and hubby feeling great and alive again!
At this time I was still waiting to find a neurosurgeon and get an apt for another opinion! I just don't understand how someone can live with something all there life and only have minor symptoms, til one day bam they hit you and just cant function right!! I don't feel the need to ask why me cuz, I feel like god has a plan and if he gave me then I was meant for it! Whether it is to help more people understand what ACM is or to help another person with ACM feel like they aren't the only one with it! I guess it doesnt really matter because its not in my hands anymore!!
It was great to see everybody at Christmas but even if I looked good at Christmas it was all I could do to make it through each gathering, by the time I got home I was wiped and my migraine meds had left me sick to my stomach so I either took a nap or slept it off! I am so thankful for family and friends but I am SO THANKFUL the holidays are over! Although, Christmas was a great day!! I had woke up with no migraine and got to spend the morning with my kids and hubby feeling great and alive again!
At this time I was still waiting to find a neurosurgeon and get an apt for another opinion! I just don't understand how someone can live with something all there life and only have minor symptoms, til one day bam they hit you and just cant function right!! I don't feel the need to ask why me cuz, I feel like god has a plan and if he gave me then I was meant for it! Whether it is to help more people understand what ACM is or to help another person with ACM feel like they aren't the only one with it! I guess it doesnt really matter because its not in my hands anymore!!
Tuesday, January 18, 2011
The day of results-December 6th & 7th
It all started with a migraine that seemed to linger for days. Until one night we decided to go out for dinner and the migraine started to escalate to the point that I could not open my left eye and the pain was so intense that I ended up screaming in the floor board of our truck! My husband tried everything to get me to calm down (due to the fact I was frightening the kids), I ended up getting sick to my stomach but I roughed the car ride home.
The next morning we decided it was best to call the doctor to get some more migraine medicine and to get checked out, she had me come in within the hour and decided that a MRI was a must (it was scheduled for the next day)
On December 7th 2010, the kids and I drove to the MRI clinic for my scan. Yes, I said with the kids!! Thankfully I got a phone call from my mother saying she had a feeling to call me, that she knew I needed a sitter(she came and picked up the kids)! Thank you!! Once inside the building, the scan started and lasted about 45 minutes, in those 45 minutes I felt like my head would explode and my eyes started to shift uncontrollably for a couple minutes! Scariest thing I have ever felt not to be in control of my own body! I think that's when I knew something wasn't quite right! I had expected the doctor to find nothing as they had in all my other scans within the past years, but that wasn't it. I received a phone call saying that they did indeed find something they called it Arnold Chiari Malformation. This would be the beginning to a very new part of my life! This was the day everything changed!
The next morning we decided it was best to call the doctor to get some more migraine medicine and to get checked out, she had me come in within the hour and decided that a MRI was a must (it was scheduled for the next day)
On December 7th 2010, the kids and I drove to the MRI clinic for my scan. Yes, I said with the kids!! Thankfully I got a phone call from my mother saying she had a feeling to call me, that she knew I needed a sitter(she came and picked up the kids)! Thank you!! Once inside the building, the scan started and lasted about 45 minutes, in those 45 minutes I felt like my head would explode and my eyes started to shift uncontrollably for a couple minutes! Scariest thing I have ever felt not to be in control of my own body! I think that's when I knew something wasn't quite right! I had expected the doctor to find nothing as they had in all my other scans within the past years, but that wasn't it. I received a phone call saying that they did indeed find something they called it Arnold Chiari Malformation. This would be the beginning to a very new part of my life! This was the day everything changed!
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