So today was my first day back at work in almost (2) weeks, well since the whole needle jabbing incident, and let me tell you it was quite the day. I awake to the normal scene from The Exorcism, rush to shower, get dressed, pack lunches, iron clothes, get children dressed, throw dinner in crock pot, drop girls at school and race to be at work 20 min away - all by 7:30.
Whew.... I made it and only 3 minutes late!
I arrive to a desk full of sticky notes, folders with notes, phone calls to return and lots of e-mails to sort through. Not to mention, this weekend I am setting up for and working a home builder show and I still had so much to do to get ready.
It's OK, deep breaths, I can do this. I try to ignore my agonizing pounding head and focus on work. My greatest and best distraction from real "life". Each day I try to arrive and leave all of my "baggage" at the front door and pick it back up on my way out, but it does not always work out that way.
By lunch time, I was already thinking this had to be the longest day EVER! I had already returned several calls, filtered through my long list of e-mails, sent out a few quotes, lined up help for this weekend, reserved a truck, placed a few orders, researched and found some very expensive mosaics for a decorator friend of mine and was threatened by a customer. (Well technically she told me she was "holy" and if we did not install her carpet tomorrow she would come down here and spank me - in a "holy" manner. Is that possible???)
As you can probably imagine by now my bruised and aching back was killing me and my head was not just pounding, there was little man stuck somewhere in there running a jackhammer at full throttle and he was not letting up.
That's when the real fun began!
I got a call from the preschool of my little one. "A" woke up from nap burning up with a fever and she needed picked up. Are you kidding me? God- Really?
Don't get me wrong, it pains me more than anything to see my children sick. They are so pitiful and I feel so helpless. But today? It not even the end of January and I have almost already used up a full years worth of sick and vacation time. My boss is going to kill me!!! (Actually my boss is a terrific man who is very supportive and compassionate to my circumstances.)
The good news is, someone else may be getting the spanking tomorrow because chances are I won't be there.
So off I go, rushing out the door to get my sick baby. Man was I right, she looks pitiful. I wrap her in my arms, kiss her sweet little head and put her in the car. This is where she informs me that she can not touch ANYTHING, so I will need to get her what ever she may need or want, because she will get everyone else sick. I am guessing this is her interpretation of something one of her teachers may have told her. Either way, I was ready and willing to get that pathetic looking sweet face whatever she needed.
Since her pediatrician could not see her today I decided to take her to the local walk-in clinic. But first, since I was not sure how long it might take, I needed to run home and grab "K" who was about to be getting out of school.
So by 4:30, we are now sitting at the pharmacy waiting for prescriptions, grabbing some Motrin (since I can not remember how much we have at home) and stocking up on pedialite.
By 7:30 baths and supper are done, the little one has her medicine and is tucked tightly in bed, for the moment.
It's funny how regardless of how I feel or what's going on with me, if one of my girls needs me everything else becomes irrelevant as I go into Gestapo mode to make sure they are taken care of, often neglecting my own needs.
As I sit here typing, replaying today over I realize that ultimately today, as with any day, was God's will. He is in control and maybe this was His way of showing me, I am not superwomen. I can not do it all and I definitely need to full heartily put my trust in Him. Not just when it's convenient for me but all of the time.
So lesson for today: I will let God continue to be my Pilot and I will put my trust in Him knowing that He will not leave me searching for the auto-pilot switch!
Monday, January 31, 2011
Friday, January 28, 2011
Repost: Prayer Request
I have decided that I am going to share a prayer request post I put on Facebook about a year ago. I posted this after speaking with the terrified mother of a 13 year old boy who was about to undergo a very lengthy brain surgery. I know some of you have already read this once, but I wanted to re-post it as a reminder of the need for continual prayers for this family. I coincidentally found out later that he made it through the surgery and as of a few months ago was doing great. However, he's future is unknown as the type of cyst / tumor we have has a tendency to return at a moments notice and complications can last a lifetime.
Thank you to all of you who lifted "Austin" and his family up in prayer!!
Thank you to all of you who lifted "Austin" and his family up in prayer!!
I have not been able to sleep the last few nights, because their is something that is weighing very heavily on my heart.
As most of you already know, I have had to have two brain surgery's in the last seven years. As a result of this, I am listed as a resource, for those who have the same type of tumor I had, with the National Brain Tumor Society and the Neurosurgeon's office, who preformed my last surgery, in 2007.
I received a call from a mother in distress on Thursday night. Her 13 year old son, Austin, has a Arachnoid Tumor, 6cm in size, located on his brain stem. The size and location of the tumor is causing paralysis of the right size of his face, twitching, deafness in his right ear, severe headaches, mood swings, blurred vision, speech complications and much more. He has had to deal with these side effects for almost a year, as there is not a Neurosurgeon who will preform such a tedious, time consuming and life threatening surgery until he is 14 years old. He turns 14 on Monday, August 3rd, and will have the 14-16 hour surgery on Tuesday, August 4th. They will have to remain away from their home for almost 13 weeks, due to post-op testing and follow up visits.
As I spoke with this mother, in length, Thursday evening, I could not help but feel her pain. As a mother myself, knowing the pain, fear and anxiety I felt as I faced my own surgery, I could not imagine having to watch one of my children go thru the same thing.
I gave her the basic run down of what to expect, as I do all those who call me looking for advice, asking questions or just in need of a listening ear.
However, she was different than all of the others, she was the MOTHER OF A CHILD who was facing the unknown. She had no idea of the physical pain he is feeling, she is just hurting for her baby.
She told me I was the third "resource" she had spoken with this week and by far my recovery time and outlook on life was definitely the most encouraging. I responded with the fact that I did not "get here" all alone, I had the support and prayers of a lot of people along the way, but most importantly I have my FAITH. Yes, some days are more difficult and painful to face than others, but if you do it with a smile on your face and God by your side, it makes those "days" more bearable.
I advised her to always asses Austin's feelings and get his input on the so called "advice" she would receive from the doctors, in the years to come. While this type of tumor/cyst is listed on the National Organization of Rare Disorder list (NORD), do not let that dictate how he will continue to live his life. Too many times I have been told to quit my job and collect disability, by these "doctors" because I am " in fact eligible". While I may be "eligible" and so may Austin, in years to come, this is not the way I want to live my life and I am sure it's not the expectations of this child's future either.
I told her to follow the doctor's post-op orders to a T (unfortunately I learned this one the hard way), don't rush the healing process (again learned the hard way), what she could expect after surgery and other bits of advice that I had to offer from my own experience. But the two most important things I could tell her were:
1) He is going to need you now more than he has ever needed anyone in his whole life. Austin will need to lean on you for support and will rely on you for all of the things he will not be able to do himself. Then I apologized , in advance, for all of the ugly things he may say to her. I tell you this, because I can not tell you how many times I had (have) to apologize to my husband for being "ugly", when he was just trying to help. "I know you are helping me wash, blow dry and straighten my hair - but you are doing it all wrong!" Boy was I ugly!
2) I reminded her of God's undying love for her and her son. That no matter how alone she felt right now, HE is right there with her with HIS loving arms are wrapped so tightly around them both. I also assured her that what is happening to them is not anyone's fault and as much as we always want someone to blame when things start to get bad, there isn't anyone.
I ended the conversation by telling her that I would be in prayer for them and to please keep me posted on the outcome of his procedure. When we hung up the phone all I could do is cry and think of the emotions this lady (who I never got her name thru all of the tears) and her son must be going through. My heart just ached for them.
So, as I layed in bed the last couple of nights thinking of a way that I might be able to help them. I had to reflect on what was the most helpful to me and my family, what did we benefit the most from? Yes, while the cards, phone calls, e-mails, visits, meals, etc ..were all extremely heartfelt and encouraging, it was the PRAYERS that pulled me through.
Therefore, I am sending this to you and asking - please weather you know me or never met me, like me or despise me - please take a moment to say a prayer for Austin, his family and the doctors and nurses that will be caring for him.
Prayer is such a powerful tool and when we all unite in our prayers to the Lord, this is where miracle's are born.
Thank you and God Bless,
Jessica Smith
"Continue to strengthen me, Lord and use my life each day, to share your love with others and help them find their way."
As most of you already know, I have had to have two brain surgery's in the last seven years. As a result of this, I am listed as a resource, for those who have the same type of tumor I had, with the National Brain Tumor Society and the Neurosurgeon's office, who preformed my last surgery, in 2007.
I received a call from a mother in distress on Thursday night. Her 13 year old son, Austin, has a Arachnoid Tumor, 6cm in size, located on his brain stem. The size and location of the tumor is causing paralysis of the right size of his face, twitching, deafness in his right ear, severe headaches, mood swings, blurred vision, speech complications and much more. He has had to deal with these side effects for almost a year, as there is not a Neurosurgeon who will preform such a tedious, time consuming and life threatening surgery until he is 14 years old. He turns 14 on Monday, August 3rd, and will have the 14-16 hour surgery on Tuesday, August 4th. They will have to remain away from their home for almost 13 weeks, due to post-op testing and follow up visits.
As I spoke with this mother, in length, Thursday evening, I could not help but feel her pain. As a mother myself, knowing the pain, fear and anxiety I felt as I faced my own surgery, I could not imagine having to watch one of my children go thru the same thing.
I gave her the basic run down of what to expect, as I do all those who call me looking for advice, asking questions or just in need of a listening ear.
However, she was different than all of the others, she was the MOTHER OF A CHILD who was facing the unknown. She had no idea of the physical pain he is feeling, she is just hurting for her baby.
She told me I was the third "resource" she had spoken with this week and by far my recovery time and outlook on life was definitely the most encouraging. I responded with the fact that I did not "get here" all alone, I had the support and prayers of a lot of people along the way, but most importantly I have my FAITH. Yes, some days are more difficult and painful to face than others, but if you do it with a smile on your face and God by your side, it makes those "days" more bearable.
I advised her to always asses Austin's feelings and get his input on the so called "advice" she would receive from the doctors, in the years to come. While this type of tumor/cyst is listed on the National Organization of Rare Disorder list (NORD), do not let that dictate how he will continue to live his life. Too many times I have been told to quit my job and collect disability, by these "doctors" because I am " in fact eligible". While I may be "eligible" and so may Austin, in years to come, this is not the way I want to live my life and I am sure it's not the expectations of this child's future either.
I told her to follow the doctor's post-op orders to a T (unfortunately I learned this one the hard way), don't rush the healing process (again learned the hard way), what she could expect after surgery and other bits of advice that I had to offer from my own experience. But the two most important things I could tell her were:
1) He is going to need you now more than he has ever needed anyone in his whole life. Austin will need to lean on you for support and will rely on you for all of the things he will not be able to do himself. Then I apologized , in advance, for all of the ugly things he may say to her. I tell you this, because I can not tell you how many times I had (have) to apologize to my husband for being "ugly", when he was just trying to help. "I know you are helping me wash, blow dry and straighten my hair - but you are doing it all wrong!" Boy was I ugly!
2) I reminded her of God's undying love for her and her son. That no matter how alone she felt right now, HE is right there with her with HIS loving arms are wrapped so tightly around them both. I also assured her that what is happening to them is not anyone's fault and as much as we always want someone to blame when things start to get bad, there isn't anyone.
I ended the conversation by telling her that I would be in prayer for them and to please keep me posted on the outcome of his procedure. When we hung up the phone all I could do is cry and think of the emotions this lady (who I never got her name thru all of the tears) and her son must be going through. My heart just ached for them.
So, as I layed in bed the last couple of nights thinking of a way that I might be able to help them. I had to reflect on what was the most helpful to me and my family, what did we benefit the most from? Yes, while the cards, phone calls, e-mails, visits, meals, etc ..were all extremely heartfelt and encouraging, it was the PRAYERS that pulled me through.
Therefore, I am sending this to you and asking - please weather you know me or never met me, like me or despise me - please take a moment to say a prayer for Austin, his family and the doctors and nurses that will be caring for him.
Prayer is such a powerful tool and when we all unite in our prayers to the Lord, this is where miracle's are born.
Thank you and God Bless,
Jessica Smith
"Continue to strengthen me, Lord and use my life each day, to share your love with others and help them find their way."
Victim of Circumstances?
Today has been quite an uneventful day. I have not done alot except snuggle with my sweet "A" watch cartoons and try to mentally and physically prepare for the weekend and the week to come. Somehow this is my coping mechanism and the OCD part of me tends to do better if I "prepare" myself for what's coming.
I awoke, as usual, this morning bright and early only to spend 30+ minutes in the bathroom throwing up. This is the first morning I have awoke this way in several days. However, it is usually the norm for me. I have even learned to get up a little earlier the mornings that I have to be at work or church in order to get it over, so I can proceed with my "normal" morning routines.
I have learned that with increased intercranial pressure and a cyst on my pituitary the transition from lying flat to sitting up causes an adverse effect with the rest of my body. If you were a fly on the wall you would find most mornings at my house are quite comical. The alarm goes off, I roll over off my back to my knees on the floor and crawl the rest of the way to the bathroom. If I make it before getting sick I consider it a great start. However, if the alternative happens, well you can guess how the rest of the day proceeds and I am sure my husband and I will never quite grow used to the smell. Every outlet in my house has a plug in. I believe that the Smith family probably single handily funds over 90% of Febreeze's profits!
At one point my soon to be 13 year old swore I was pregnant and trying to hide it from my husband! After much debate and pinky promising I think she now is finally convinced I am NOT with child. It's not that I do not LOVE children, I do. I just never, ever want to put myself or my unborn child through the misery of a pregnancy full of unknowns. Will I have a seizure during delivery? Will the child be born with a cyst on their brain? Will the umpteen thousand prescriptions I have to take every day effect my unborn child?
While I would never trade my two precious girls for anything in the world, you can understand why being pregnant would not be beneficial to anyone.
Sorry getting off track here....
So after cleaning up, scrubbing my teeth (yes - scrubbing) and changing shirts, finally I got to enjoy my favorite part of the morning. A hot cup of coffee in peace and quite! Ahhhh... I love the serenity of sitting with a hot cup of coffee, 5:00 news playing in the background and my daily devotional in hand. Something about the peacefulness of sitting with God's word and giving Him many thanks and praise for all of the blessings He has given my family.
My devotional this morning talked about anger and God's forgiveness. (Ephesians 4: 31-32) It's easy to be angry. It's easy to play the blame game. After all when life is throwing all types of trials and tribulations our way we often blame God for what we are going through. We point the finger and become angry for "Him letting this happen". But is it really His fault? Is it really anyones fault? God does not wish his children to suffer. He loves us. When we laugh He laughs and when we weep He weeps right along beside us.
It's funny because my dad and I were just talking about this very thing the other day. He said "I don't understand why He just does not take your pain away, you know he can. Why did He choose you to endure all of this?" My only response to my dad was this - "God is obviously using me and my illness to help others. One day everything I have been through will have a meaning and it will make sense. If only one persons life is changed or if one mother's nerves are set as ease because she was given my number - then to me every bit of pain is worth it." He replied "I know but I hate seeing you like this and I hate that I can not do anything to fix it. I would rather suffer than to see you." (For those of you that do not know I am listed as a resource for the National Brain Tumor Society and through my last Neurosurgeons office so that anyone who is facing the same or similar issues as myself can call me. We may talk about what to expect, the procedures, the surgery, how it has effected my life, etc... But most of all I find myself just listening and always offering a prayer, most of the time that's all they need is someone who's been through the same thing to listen. It has also been a awesome tool for me to remind them of God's undying love for them.) I had to then tell my dad that "God knows that there is NO WAY a man could go through what I go through, I mean I love you and all but we know that most all men are big babies when their sick and you are no different." His simple reply - "Your right!"
Trust me I am no saint! I hurt all the time and I get angry and upset just like everyone else. I have both good and bad days. I get upset with others and curse words have even been heard leaving this mouth. (Just ask the cheif resident at the hospital last week, I am sure he could give you an earfull of the nice inappropriate language I was using) But all I can do is try. I know I am a sinner. I know I am not perfect and often I feel as if I am not worthy of the sacrifices has God made for me. But guess what - we all are! We are all human and from time to time us humans make mistakes. Its recognizing the mistakes and growing because of them.
So for today, I will take this throbbing head of mine and recognize that even though I live in a world that is surrounded by anger and hate I will choose not to become a victim of circumstances. Instead I will remember God's unending forgiveness for me and I will try to treat others with the kindness and compassion that God continues to show to me each and every day!!
I awoke, as usual, this morning bright and early only to spend 30+ minutes in the bathroom throwing up. This is the first morning I have awoke this way in several days. However, it is usually the norm for me. I have even learned to get up a little earlier the mornings that I have to be at work or church in order to get it over, so I can proceed with my "normal" morning routines.
I have learned that with increased intercranial pressure and a cyst on my pituitary the transition from lying flat to sitting up causes an adverse effect with the rest of my body. If you were a fly on the wall you would find most mornings at my house are quite comical. The alarm goes off, I roll over off my back to my knees on the floor and crawl the rest of the way to the bathroom. If I make it before getting sick I consider it a great start. However, if the alternative happens, well you can guess how the rest of the day proceeds and I am sure my husband and I will never quite grow used to the smell. Every outlet in my house has a plug in. I believe that the Smith family probably single handily funds over 90% of Febreeze's profits!
At one point my soon to be 13 year old swore I was pregnant and trying to hide it from my husband! After much debate and pinky promising I think she now is finally convinced I am NOT with child. It's not that I do not LOVE children, I do. I just never, ever want to put myself or my unborn child through the misery of a pregnancy full of unknowns. Will I have a seizure during delivery? Will the child be born with a cyst on their brain? Will the umpteen thousand prescriptions I have to take every day effect my unborn child?
While I would never trade my two precious girls for anything in the world, you can understand why being pregnant would not be beneficial to anyone.
Sorry getting off track here....
So after cleaning up, scrubbing my teeth (yes - scrubbing) and changing shirts, finally I got to enjoy my favorite part of the morning. A hot cup of coffee in peace and quite! Ahhhh... I love the serenity of sitting with a hot cup of coffee, 5:00 news playing in the background and my daily devotional in hand. Something about the peacefulness of sitting with God's word and giving Him many thanks and praise for all of the blessings He has given my family.
My devotional this morning talked about anger and God's forgiveness. (Ephesians 4: 31-32) It's easy to be angry. It's easy to play the blame game. After all when life is throwing all types of trials and tribulations our way we often blame God for what we are going through. We point the finger and become angry for "Him letting this happen". But is it really His fault? Is it really anyones fault? God does not wish his children to suffer. He loves us. When we laugh He laughs and when we weep He weeps right along beside us.
It's funny because my dad and I were just talking about this very thing the other day. He said "I don't understand why He just does not take your pain away, you know he can. Why did He choose you to endure all of this?" My only response to my dad was this - "God is obviously using me and my illness to help others. One day everything I have been through will have a meaning and it will make sense. If only one persons life is changed or if one mother's nerves are set as ease because she was given my number - then to me every bit of pain is worth it." He replied "I know but I hate seeing you like this and I hate that I can not do anything to fix it. I would rather suffer than to see you." (For those of you that do not know I am listed as a resource for the National Brain Tumor Society and through my last Neurosurgeons office so that anyone who is facing the same or similar issues as myself can call me. We may talk about what to expect, the procedures, the surgery, how it has effected my life, etc... But most of all I find myself just listening and always offering a prayer, most of the time that's all they need is someone who's been through the same thing to listen. It has also been a awesome tool for me to remind them of God's undying love for them.) I had to then tell my dad that "God knows that there is NO WAY a man could go through what I go through, I mean I love you and all but we know that most all men are big babies when their sick and you are no different." His simple reply - "Your right!"
Trust me I am no saint! I hurt all the time and I get angry and upset just like everyone else. I have both good and bad days. I get upset with others and curse words have even been heard leaving this mouth. (Just ask the cheif resident at the hospital last week, I am sure he could give you an earfull of the nice inappropriate language I was using) But all I can do is try. I know I am a sinner. I know I am not perfect and often I feel as if I am not worthy of the sacrifices has God made for me. But guess what - we all are! We are all human and from time to time us humans make mistakes. Its recognizing the mistakes and growing because of them.
So for today, I will take this throbbing head of mine and recognize that even though I live in a world that is surrounded by anger and hate I will choose not to become a victim of circumstances. Instead I will remember God's unending forgiveness for me and I will try to treat others with the kindness and compassion that God continues to show to me each and every day!!
Thursday, January 27, 2011
Over the last week
So now that you are all up to speed on what living with this "condition" is like, I am going fill you in on the adventures this past week has brought!!
Last Wednesday I was scheduled to have an isotope cisterniogram along with a CSF (cerebral spinal fluid) pressure check. For those of you that are not familiar with these tests and what they entail, I will fill you in.
Isotope is a radioactive material that is inserted into your spine via a needle, while you lay on a cold flat metal table with a Styrofoam triangle under your stomach. (This is done so they can accurately access between the correct vertebra's) After they inject the material, delivered via an astronaut dressed radiologist who looks as if her rocket ship is to deploy at any given moment, you are made to wait for 30-40 minutes, flipped upside down and sent to the basement where scans of your spine and brain are taken. They also insert tampon looking gauze into both nostrils so that they can later pull them out and test them for the nuclear meds.
The CSF pressure test is done with what I call a turkey thermometer. Its a big needle with a pressure gauge on the end. Ideally it is supposed to test the severity of the pressure upon inserting it into the spinal canal.
Well we all know that my test never go according to plan and are always less than ideal.
So I show up to the test and I am escorted to the radiology department. I am already very nervous at the anticipation of being stuck in the spine with a long, flexible needle. Not my idea of fun times!!
So here I am laying on flat table, half naked, heart pounding and surrounded by at least 15 strangers. (Oh yes- I forgot to mention that my neurosurgeon is part of one of the largest teaching hospital's in our area, so you always have an audience of eager young college grads who are fulfilling their internships and residents who just can't wait to participate hands on, with a real LIVE patient.) First comes the "cold small pricks" to numb the area, like that does any good, then a pause and the needle is handed to the chief resident. Again - heart pounding out of chest by now! "Please God let him get it right the first time, Please God let it be quick, Please God.......... Ouch.....
"Your in the wrong area" I hear the radiologist say from behind the window, "But I am exactly where the textbook says to be", "I don't give a damn about the text book your in the wrong area, you need to come up a little". OK now ready for second stick..."Are you a moron, you are in her cartilage, hurry and get the needle out or it is going to be stuck there" - What????? Stuck there??? Are you kidding me?? Please God.... "Hey this isn't rocket science- take the needle out, come down and little and push till you hear a pop."
What a pop? What kind of Pop? "Please hurry my legs are really hurting" I ask as nice and as politely as any human being could possibly be in this situation. Stick three - surely he'll get it right this time. Right?
Wrong!! Three additional sticks, 45 minutes later and my neurosurgeon demanding he hand over the needle the isotope is finally inserted. Whew were done, so I thought. I was wrong again, pressure check still was not done. I'm OK, I don't need my pressure checked, I can continue living like this. If my head explodes, I'll be fine I promise! Please just don't poke me again.
No amount of begging or pleading was going to change their minds, so I decided to just keep all of the inner begging to myself.
So in goes the turkey thermometer! Ooouuuuccccchhhhh! Man that hurt.
"Dr. M I am not getting a return on CS fluid, all I am getting is blood" - What - did he just say blood? No, I must be delirious from all of the pain, surely he did not say blood. This can't be good.
"Are you all the way in?".... "Yes sir, there is only a feedback of blood"..... "Ok, pull out we will have to try to retest later."
The room suddenly grows silent, very silent. Are they gone?, I thought.
"Mrs. Smith... since we were not able to get a accurate pressure reading we are going to have to try again at another time, for now I want you to lie real still while we rotate you 96 degrees, please be very still."
Is this man crazy???? Still? 96 degrees - who rotates someone 96 degrees?? Apparently they do and still I was to be.
After my moderately exhilarating fair ride stimulation, I was then wheeled off to the basement, but not before a short parade in front of my very terrified looking audience. "Don't look so freaked out guys, this is just the beginning of the rest of your lives."
They did not find my comment no where near as humorous as I did. I guess my timing was a little off.
Scan one proved there was some sort of contamination and I was forced to strip down to my birthday suit in a room that felt as if beef carcasses were previously stored there.
Scan two (4 hours later) proved that the isotope was moving along according to schedule. I was released to go home and report back the next morning bright and early.
When having a lumbar puncture one must lie flat for several days to allow the blood to clot around injection site (or sites in my case) and help in preventing whats know as a spinal headache. (CSF fluid is no longer cushioning the brain and it causes your brain to sag inside your skull - or so I have been told)
So my sweet dear husband drives ever so carefully the hour ride home, taking extreme caution to avoid the speed bumps placed along every block for the first 15 miles. My mother decides she will get my precious babies and take them to her house for dinner and baths.
The first night was really rough. Waking up covered in vomit, I have to admit is not very attractive. So my patient, very understanding husband helps clean me up, change our sheets and gets me settled back into to bed only to realize we have to do it all over again. Well if you are like me, you realize at this point I am running out of extra sets of queen size sheets.
Finally, I drift off to sleep for about an hour or so.
The next few days turned out to be just as rough as the first. I think the washer ran nonstop.
Two additional trip back to the hospital for scans and one to the ER for the intense pain.
I just keep telling myself that "this too shall pass and with God by my side I WILL make it through this." I was reminded of one of my favorite scriptures:
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?
Matthew 6:25-32
I mean if God vowed to take care of the birds, surely He would take care of me too!! His everlasting love has not failed me thus far.
By Sunday, I was still in pretty bad shape but my husband was set to leave to go out of town for work for 3 weeks. Given the economy and the fact that the bills do not pay themselves, we decided it was best for him to go ahead and leave as scheduled. My mom and dad would come and get me, the girls and our undisciplined puppy and we would stay with them for a few days.
So needless to say the last few days have been quite comical as I have watched my 4 year old try to manipulate my parents into giving into to her every whim and my parents try not to cave. My mom has been fantastic at trying to keep things (dinner time, baths, nite nite stories) as routine as possible for the little one and my dad has been the "enforcer" I have not been able to be. Although, we all know he really a big softy at heart!!
Until yesterday, I could not stand for more than a minute or two at a time. Today is much better, as I have been able to sit upright for a good portion of the day without feeling as if the top of my head is separating from the bottom.
So all in all, a week later, I think I am finally on the mend.
The follow up visit to my neurosurgeon proved that I will need to undergo another LP in March. He is kind enough to wait until my body has had time to heal from the first. Thanks Dr. M!
Until then, I will just face today and what today brings. Enjoy my family and friends and not worry about tomorrow or what it may bring. For I can not control the future or change my circumstances BUT I can choose how I will deal with them.
For me it's with a smile on my face, the love of Jesus Christ in my heart and not taking a single moment, regardless of the size, for granted!!!!
Last Wednesday I was scheduled to have an isotope cisterniogram along with a CSF (cerebral spinal fluid) pressure check. For those of you that are not familiar with these tests and what they entail, I will fill you in.
Isotope is a radioactive material that is inserted into your spine via a needle, while you lay on a cold flat metal table with a Styrofoam triangle under your stomach. (This is done so they can accurately access between the correct vertebra's) After they inject the material, delivered via an astronaut dressed radiologist who looks as if her rocket ship is to deploy at any given moment, you are made to wait for 30-40 minutes, flipped upside down and sent to the basement where scans of your spine and brain are taken. They also insert tampon looking gauze into both nostrils so that they can later pull them out and test them for the nuclear meds.
The CSF pressure test is done with what I call a turkey thermometer. Its a big needle with a pressure gauge on the end. Ideally it is supposed to test the severity of the pressure upon inserting it into the spinal canal.
Well we all know that my test never go according to plan and are always less than ideal.
So I show up to the test and I am escorted to the radiology department. I am already very nervous at the anticipation of being stuck in the spine with a long, flexible needle. Not my idea of fun times!!
So here I am laying on flat table, half naked, heart pounding and surrounded by at least 15 strangers. (Oh yes- I forgot to mention that my neurosurgeon is part of one of the largest teaching hospital's in our area, so you always have an audience of eager young college grads who are fulfilling their internships and residents who just can't wait to participate hands on, with a real LIVE patient.) First comes the "cold small pricks" to numb the area, like that does any good, then a pause and the needle is handed to the chief resident. Again - heart pounding out of chest by now! "Please God let him get it right the first time, Please God let it be quick, Please God.......... Ouch.....
"Your in the wrong area" I hear the radiologist say from behind the window, "But I am exactly where the textbook says to be", "I don't give a damn about the text book your in the wrong area, you need to come up a little". OK now ready for second stick..."Are you a moron, you are in her cartilage, hurry and get the needle out or it is going to be stuck there" - What????? Stuck there??? Are you kidding me?? Please God.... "Hey this isn't rocket science- take the needle out, come down and little and push till you hear a pop."
What a pop? What kind of Pop? "Please hurry my legs are really hurting" I ask as nice and as politely as any human being could possibly be in this situation. Stick three - surely he'll get it right this time. Right?
Wrong!! Three additional sticks, 45 minutes later and my neurosurgeon demanding he hand over the needle the isotope is finally inserted. Whew were done, so I thought. I was wrong again, pressure check still was not done. I'm OK, I don't need my pressure checked, I can continue living like this. If my head explodes, I'll be fine I promise! Please just don't poke me again.
No amount of begging or pleading was going to change their minds, so I decided to just keep all of the inner begging to myself.
So in goes the turkey thermometer! Ooouuuuccccchhhhh! Man that hurt.
"Dr. M I am not getting a return on CS fluid, all I am getting is blood" - What - did he just say blood? No, I must be delirious from all of the pain, surely he did not say blood. This can't be good.
"Are you all the way in?".... "Yes sir, there is only a feedback of blood"..... "Ok, pull out we will have to try to retest later."
The room suddenly grows silent, very silent. Are they gone?, I thought.
"Mrs. Smith... since we were not able to get a accurate pressure reading we are going to have to try again at another time, for now I want you to lie real still while we rotate you 96 degrees, please be very still."
Is this man crazy???? Still? 96 degrees - who rotates someone 96 degrees?? Apparently they do and still I was to be.
After my moderately exhilarating fair ride stimulation, I was then wheeled off to the basement, but not before a short parade in front of my very terrified looking audience. "Don't look so freaked out guys, this is just the beginning of the rest of your lives."
They did not find my comment no where near as humorous as I did. I guess my timing was a little off.
Scan one proved there was some sort of contamination and I was forced to strip down to my birthday suit in a room that felt as if beef carcasses were previously stored there.
Scan two (4 hours later) proved that the isotope was moving along according to schedule. I was released to go home and report back the next morning bright and early.
When having a lumbar puncture one must lie flat for several days to allow the blood to clot around injection site (or sites in my case) and help in preventing whats know as a spinal headache. (CSF fluid is no longer cushioning the brain and it causes your brain to sag inside your skull - or so I have been told)
So my sweet dear husband drives ever so carefully the hour ride home, taking extreme caution to avoid the speed bumps placed along every block for the first 15 miles. My mother decides she will get my precious babies and take them to her house for dinner and baths.
The first night was really rough. Waking up covered in vomit, I have to admit is not very attractive. So my patient, very understanding husband helps clean me up, change our sheets and gets me settled back into to bed only to realize we have to do it all over again. Well if you are like me, you realize at this point I am running out of extra sets of queen size sheets.
Finally, I drift off to sleep for about an hour or so.
The next few days turned out to be just as rough as the first. I think the washer ran nonstop.
Two additional trip back to the hospital for scans and one to the ER for the intense pain.
I just keep telling myself that "this too shall pass and with God by my side I WILL make it through this." I was reminded of one of my favorite scriptures:
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?
Matthew 6:25-32
I mean if God vowed to take care of the birds, surely He would take care of me too!! His everlasting love has not failed me thus far.
By Sunday, I was still in pretty bad shape but my husband was set to leave to go out of town for work for 3 weeks. Given the economy and the fact that the bills do not pay themselves, we decided it was best for him to go ahead and leave as scheduled. My mom and dad would come and get me, the girls and our undisciplined puppy and we would stay with them for a few days.
So needless to say the last few days have been quite comical as I have watched my 4 year old try to manipulate my parents into giving into to her every whim and my parents try not to cave. My mom has been fantastic at trying to keep things (dinner time, baths, nite nite stories) as routine as possible for the little one and my dad has been the "enforcer" I have not been able to be. Although, we all know he really a big softy at heart!!
Until yesterday, I could not stand for more than a minute or two at a time. Today is much better, as I have been able to sit upright for a good portion of the day without feeling as if the top of my head is separating from the bottom.
So all in all, a week later, I think I am finally on the mend.
The follow up visit to my neurosurgeon proved that I will need to undergo another LP in March. He is kind enough to wait until my body has had time to heal from the first. Thanks Dr. M!
Until then, I will just face today and what today brings. Enjoy my family and friends and not worry about tomorrow or what it may bring. For I can not control the future or change my circumstances BUT I can choose how I will deal with them.
For me it's with a smile on my face, the love of Jesus Christ in my heart and not taking a single moment, regardless of the size, for granted!!!!
Wednesday, January 26, 2011
From The Beginning
In order to understand the present I will have to take you back a few years, a short walk down memory lane... well what I can remember anyway!
It all started in September of 2001. I was at work one nice September afternoon when I awoke to the realization that I was in the back of an ambulance because I had undergone several seizures in a few minutes time. I was rushed to the local hospital where they told me I was suffering from heat exhaustion (in mid September???) and my potassium was low.
Over the next several months I suffered from intense crippling headaches, lots of seizures, loss of Peripheral vision, confusion, anxiety and the list goes on. I saw several doctors and the inside of every local ER within a 100 mile radius. Still no answers.
Finally after a visit to my family doctor he sent me to a neurologist who diagnosed me with a large Rathky's Cleft Cyst that was compressing my optic chasim and was causing my pituitary gland to displaced.
Within a few weeks I had an appointment with a local neurosurgeon and a date was set to remove the cyst -
Feb. 2, 2002. I was told I would have to learn to walk, talk and read all over again. Not something a 24 year old mother of a 3year old wants to hear. But my faith was strong and I put my trust
in God.
In the recovery room I was walking, talking and even joking with the doctors and nurses and my 3 week stay turned into only 3 days. I was determined that I was not going to let the "norm" dictate who I was or who I would become.
Fast Forward to 2007: I am happily married to the love of my life and we have two beautiful daughters. "K" who is nine and "A" who is 6 months old. My symptoms begin to re-occur and everyday tasks were becoming more and more difficult. After routine visit to my neurologist he sent me to have a MRI.
Before I could even get off the exam table the radiologist came out to let me confirm what I already knew. "Mam, you have a massive Arachnoid Cyst that is the size of a grapefruit".
"Hmmmm.... I thought it was a Rathky's Cleft", I replied.
"No Mam", he said - "its definitely an Arachnoid and its the largest I have ever seen. Well actually I never seen one, except in text books. You are going to need someone to operate immediately and unfortunately, I do not think you will find the help you need locally".
"Ok, thank you".
I mean I think its only right to thank the poor panicky radiologist who just told me I have the largest cyst he's ever seen! Don't you?
So.. after alot of research and prayers I found the one and only Dr. at the time who would even consider operating because of the size and location. Dr. S in California. Over 500 miles away.
So what a girl to do with a deformed head and a cyst the size of a grapefruit? Well board a plane of course (with my wonderful husband in tow), say lots of prayers and get ready to face the unknown for a second time.
This time would be different. Rather than shave my head and prepare for a full craniotomy, the Dr would access the cyst thru my right nostril using a laser. Nasal Endoscopic surgery. Newest cutting edge technology! Wow, I was impressed. Although I could not help but thinking about the Egyptians I had learned about in middle school who's brains were removed this way. Surely he would not accidentally grab my brain - right?
10 hours later, brain intact, I was looking into my poor, weeping husbands gorgeous blue eyes. Everything was going to be fine. They were able to remove most of the cyst and plug my head with a piece of fatty tissue from my stomach. (Yes, my husband still calls me fat head). After 24 hours I was released from the hospital and able to go back to my hotel room until our follow up appt in a few days. I know what your thinking you only had to spend 24 hours in hospital after brain surgery??? Well, that's really my fault. In hindsight I probably should have stayed a couple more days but hey we were in California. This southern Alabama girl did not want spend a moment more stuck in a hospital when I could have been shopping on Rodeo Drive or miss my chances of being selected for the Price is Right! That's one lesson I definitely learned the hard way.
So now your up to speed on the past.... Lets address the present!
Short Summary: Cyst is back and bigger than ever. Turns out plugging sinus cavity with fat is not such a good idea, as this can cause a slow CSF leak. Two brain surgeries cause scar tissue that can lead to intercranial hypertension (lamines terms: makes your head feel as if it going to self combust at any moment notice). Headaches have become worse and are now classified in a pain category all of their own, I grow more and more confused each day, My memory is slowly fading (now under certain circumstances this has worked to my benefit), my neck and upper back are always stiff and hurting, vision is slowly deteriorating and I become irritated very easily.
But the good news in all of this is that I REFUSE to let my illness control my life and dictate what type of person I am going to be. I have decided to face each new day with a smile on my face, love in my heart and let the Holy Spirit guide me on this journey. After all I am a mother to two of the most amazing children and if I were to let them see that is OK to give up, what kind of role model would I be??
I am not saying that each new day does not bring its own challenges, because it does. What I am saying is that it is up to us on how we deal with them.
I am hoping by starting this blog I might be able to help others see how God turns our misery into our ministry.
I hope you will join me as I (try) to post daily what is is like living with this illness and the blessings that I continue to receive because of it.
Subscribe to:
Posts (Atom)