This is such a ridiculously silly "disease"! It really just makes me want to beat the living tar out of people. If only it was that easy! JK. This tiny disease (as i view it) is exhausted and frustrating! GRR. There are a 1000 other things that I can think of that are worse then this but this "tiny" disease its just beating me down.
Its the lack of sleep I believe that is making it so hard. I am sleeping a maximum of 3 hours a night...this has been going on for a couple months. If there is a "good" night and I can manage more hours then 3 then I wake up in extreme head pain. Example, about a week ago I was spent I slept all night no interruptions and I woke up to a swollen face & neck, and my eye was swollen shut not to mention all the pain to go with it. On the plus side I looked like a swamp monster...hair and all! The kids really enjoyed that. So it made me laugh! LOL.
I really have no idea what causes this but I think its from laying on one side of my head to long that it actually shuts the fluid from draining down and I end up with extreme swelling??
Everyday it seems like I have been asked this: Why don't you seek a 2nd opinion and get some answers. The answer in my head to that question is usually....would you go and rack up bills on something that isn't fixable? NO? Then stop freaking asking me!!
Truthfully here is why:
1. Insurance covers some but not all and I have cost our family enough hardship that I refuse to do it again. Even if I am in pain its not worth others suffering with me.
2. There is NO cure for what I have so in my eyes if its not fixable then I have to learn how to deal with this crud!
3. The main reason might be I am terrified that they are going to say we need to do another surgery and honestly I just cant. For the cost. For the pain. For my family. For the nightmares. Its N O T worth it EVER!
Weak is how I am feeling lately, people are irritating me immensely... and normal stresses seem to be ALOT more stressful then ever!
People say I am the strongest person they know. HAHA, well I am feeling anything but strong! I cant deal with anything the way a person should and I am getting really down on myself. I am not strong...I do what I have to do to survive. That's not strong that's just how anyone would do it or so I feel that's how they would do it. Life really is how you make it!
Blah blah...enough about me. Things will get better they always do. Just hopefully sooner then later this time! I am thankful for all the wonderful family and friends I have...they have made this a 100 times more bearable!! God has continued to bless my family each and everyday...hopefully I will always remember that!
Thursday, June 28, 2012
Friday, May 4, 2012
Not normal?
Normal means conforming to the standard or the common type; usual;
regular; natural.
or free from disease or malformation.
Seriously, I am laughing my pants off right now.... normal means free of disease or malformation? What?!
I guess I am no longer defined as "normal then! To bad I never considered myself normal from the gecko. You can ask my husband and he will agree I am anything but normal...especially for a female! I am proud to say I am NOT normal!
I had a eye opening the other day....I have been letting this disease get the best of me, hence the last blog post. I will not acknowledge the pain any longer!
ACM has thought me things people wait there whole life to find! God has taught me how to truly "Love" everything...but most importantly love myself. Don't allow a disease to define you and consume you! I know of a lot of people that have allowed there illness to control there life...to shape them as a person...and I refuse to be one of them!! This blog is a vow to myself that "in writing" I vow to NEVER EVER let this get the best of me again! There you go you witnessed it...so help me hold myself to this!
or free from disease or malformation.
Seriously, I am laughing my pants off right now.... normal means free of disease or malformation? What?!
I guess I am no longer defined as "normal then! To bad I never considered myself normal from the gecko. You can ask my husband and he will agree I am anything but normal...especially for a female! I am proud to say I am NOT normal!
I had a eye opening the other day....I have been letting this disease get the best of me, hence the last blog post. I will not acknowledge the pain any longer!
ACM has thought me things people wait there whole life to find! God has taught me how to truly "Love" everything...but most importantly love myself. Don't allow a disease to define you and consume you! I know of a lot of people that have allowed there illness to control there life...to shape them as a person...and I refuse to be one of them!! This blog is a vow to myself that "in writing" I vow to NEVER EVER let this get the best of me again! There you go you witnessed it...so help me hold myself to this!
Tuesday, April 10, 2012
Ugh
I thought I had decided to close this page...but here I go with another post!
I am beyond exhausted....not the kind of exhausted you feel when you have a newborn and aren't getting sleep, and not the kind of exhausted you are after you cried out your eyes out all day...this is far beyond what I have ever dealt with.
I honestly feel like I want to shut myself off from the whole world...including my family and friends. I am tired all day even tho I am sleeping 8 plus hours a night. My headaches are happening daily and continuing to get worse as the months go by. At first if I would ignore the dull pain I could make it through a day, now I am barely trucking through the day at all. I am trying to keep up with life and our activities and pictures...but I am afraid that I one day will not be able to do it anymore! I don't want to complain because then I feel like I am failing at the one thing that is the most important to control...but I am failing to grasp this.
My body & head are hurting nonstop and there is no relief to my problem. I have to continue to force myself through the day, because this is never going away...but I am afraid one day will come and I wont be able to put on a happy face anymore and I will lose everything I love.
Since surgery, I seem to have diarrhea of the mouth...things come out that shouldn't or something I plan on saying nicely comes out rude and witchy. So if I say something out of the blue or rude...please ignore me!!
I am at the verge of tears all the time and usually I can handle a lot of crap but right now I just feel weak.. I don't know how to socialize with people anymore..its hard to have a conversation with people without the pain taking over. What happened to my easy going, funny, laughing Tisha that I used to be? Will I ever be that person I was...I highly doubt it! 100 percent of my day involves me concentration on lowering my pain level. So I am sorry to all you wonderful people that I try to socialize with and fail! I really wish it was different! I'm starting to wonder if ACM is beginning to change me as a person...I always thought it changed me for the better...but now I am worried I will never be the same mother, friend, wife, etc that I used to be!
Please dont judge me on this post...I just needed to get all this out and whats a better place then here!
I am beyond exhausted....not the kind of exhausted you feel when you have a newborn and aren't getting sleep, and not the kind of exhausted you are after you cried out your eyes out all day...this is far beyond what I have ever dealt with.
I honestly feel like I want to shut myself off from the whole world...including my family and friends. I am tired all day even tho I am sleeping 8 plus hours a night. My headaches are happening daily and continuing to get worse as the months go by. At first if I would ignore the dull pain I could make it through a day, now I am barely trucking through the day at all. I am trying to keep up with life and our activities and pictures...but I am afraid that I one day will not be able to do it anymore! I don't want to complain because then I feel like I am failing at the one thing that is the most important to control...but I am failing to grasp this.
My body & head are hurting nonstop and there is no relief to my problem. I have to continue to force myself through the day, because this is never going away...but I am afraid one day will come and I wont be able to put on a happy face anymore and I will lose everything I love.
Since surgery, I seem to have diarrhea of the mouth...things come out that shouldn't or something I plan on saying nicely comes out rude and witchy. So if I say something out of the blue or rude...please ignore me!!
I am at the verge of tears all the time and usually I can handle a lot of crap but right now I just feel weak.. I don't know how to socialize with people anymore..its hard to have a conversation with people without the pain taking over. What happened to my easy going, funny, laughing Tisha that I used to be? Will I ever be that person I was...I highly doubt it! 100 percent of my day involves me concentration on lowering my pain level. So I am sorry to all you wonderful people that I try to socialize with and fail! I really wish it was different! I'm starting to wonder if ACM is beginning to change me as a person...I always thought it changed me for the better...but now I am worried I will never be the same mother, friend, wife, etc that I used to be!
Please dont judge me on this post...I just needed to get all this out and whats a better place then here!
Thursday, February 16, 2012
It's been One year!
Wow, one year has already passed since decompression surgery! It honestly feels like yesterday...I can still picture it like I am living it and remember the pain like it was yesterday!
Things have improved greatly, I have migraines occasionally but not near as often as before surgery, all the numbness in my limbs and fingers have subsided completely, I find myself able to think clearly most of the time now, and I'm not couch bound anymore!
Things have changed a lot tho too...the way I handle things, perceive things, I have horrible nightmares from surgery now, I still cant sleep on my back due to pain, I cant really touch my neck without severe pain actually, weather used to be my favorite thing but now I hate change in weather... it causes me to have horrible head pain now! The pain control is still an issue for me but its not a fight I am willing to give up on...to much to lose! This surgery has allowed me to gain back things I thought I had lost in life...I was asked not to long ago if I would do the surgery again if I knew the results...well each day I change my mind so as for today I say "yes"...but ask me tomorrow! :)
Even with all the changes that this surgery has done to me I am grateful for the time I get to spend with my family and friends! I am so happy I am able to sit and enjoy time with others instead of confining myself and family at home! Being a couch potato wasn't much fun I have to admit!
I am blessed to have experienced the surgery and feel halfway human again, but I am still having a hard time adjusting to life with the "New brain" and all the new symptoms! This surgery gave me a chance to enjoy life again and be the mother to my children I thought I would never be again! I am thankful for that and ever grateful! Its been a wild ride this first year! Without the love and support from my family and friends and complete strangers I would not be where I am today! Truly feeling blessed, overwhelmed, joyed, and terrified at the same time! LOL...who knew that could happen!!
Things have improved greatly, I have migraines occasionally but not near as often as before surgery, all the numbness in my limbs and fingers have subsided completely, I find myself able to think clearly most of the time now, and I'm not couch bound anymore!
Things have changed a lot tho too...the way I handle things, perceive things, I have horrible nightmares from surgery now, I still cant sleep on my back due to pain, I cant really touch my neck without severe pain actually, weather used to be my favorite thing but now I hate change in weather... it causes me to have horrible head pain now! The pain control is still an issue for me but its not a fight I am willing to give up on...to much to lose! This surgery has allowed me to gain back things I thought I had lost in life...I was asked not to long ago if I would do the surgery again if I knew the results...well each day I change my mind so as for today I say "yes"...but ask me tomorrow! :)
Even with all the changes that this surgery has done to me I am grateful for the time I get to spend with my family and friends! I am so happy I am able to sit and enjoy time with others instead of confining myself and family at home! Being a couch potato wasn't much fun I have to admit!
I am blessed to have experienced the surgery and feel halfway human again, but I am still having a hard time adjusting to life with the "New brain" and all the new symptoms! This surgery gave me a chance to enjoy life again and be the mother to my children I thought I would never be again! I am thankful for that and ever grateful! Its been a wild ride this first year! Without the love and support from my family and friends and complete strangers I would not be where I am today! Truly feeling blessed, overwhelmed, joyed, and terrified at the same time! LOL...who knew that could happen!!
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