Wednesday, September 28, 2011

Now We Wait...AGAIN!

The Dr.'s office called this morning and they said we were not going to be able to do the Spinal Tap tomorrow because there was more bloodwork that needed to be done. Well, that just did not sit well! I explained to the sweet young lady on the phone that I felt it was important that we go ahead and pull this fluid as soon as possible...I have already waited a week and did not feel that waiting another week was what I needed (or wanted) to do. She agreed and promised she would talk with Dr. V and get back with me. I did not have to wait too long to hear from Dr. V. He called me and assured me that he wanted me to have this done asap and that he was calling to get me in with another facility tomorrow.

I got the call and he told me it was on for tomorrow at Brookwood, 11 am. I was so excited and began to make plans. Well, that was short lived! He called me back and told me that Brookwood had called him and the original day/time was not a "true time." What in the world does that mean? Well, for me it means that I will not be going tomorrow for the procedure.

I am scheduled, however for my Spinal Tap to be completed on Monday, October 3, 10:30 am at Brookwood Hospital. I am trying to help myself remember to take deep breaths!!

I was out and about when I received these calls, so all the way back to the office I rode in silence and listened for God. I've been doing a lot of that lately. All I keep hearing was my voice repeat over and over, "God's timing is perfect!" At this point, other than His love and faithfulness, that is what I am clinging to! So, for now we wait! We pray! And we listen!

I know for sure that He is protecting me. I know for sure that He has me in His hands. I know for sure He only wants what is best for me and oh how he loves me!

For those of you who know me, know that waiting has not always been the thing that I am the best at. I tend to get impatient and try to rush things. God is teaching me some valuable life lessons. Please pray that I fully rely on Him to guide me (and James) through this process. Prayer requests remain the same from yesterday's post (see below). Please know that I am thankful for each of you who read this and pray!

Until next time...

Tuesday, September 27, 2011

We Have A Day!

After much waiting, I received the call today that my Spinal Tap (LP), will be done on Thursday. James and I will travel to Birmingham on Thursday morning and meet with the Dr. and his "study" team at 9:00 am. The girls from the team will escort me over for the LP once a series of tests and paperwork are completed.

It is one thing to talk and pray about having this procedure done, but to know of a set day and time makes this all too real. I have been kind of surprised at how calm I have been through all of this (I know it is because you all are praying). I just pray that the same sense of calm stays with me.

Thank you so much for your words of encouragement, the flowers, phone calls just to check on me, but most importantly your prayers. You will never know how you have touched me. There are not enough words to express my gratitude to each of you! I consider each of you blessings from above. Please know that my life is richer because of you!

Many have asked how I feel. Most days I feel good. The headaches seem to have slacked off and do not occur daily. For this I am grateful! I have a lot of days where I just seem to be sluggish and want to be lazy. I am ready to feel like myself all of the time! James and Evan need for me to be myself! Today has been a great day! I have had energy and have been very productive (I know Dr. Troglen (my boss) is thankful for that). I praise the Lord for days like today!

People ask what the headaches are like. They really are not too bad, not like you would think. They just drain the energy from me. The most frustrating part is that they originate right behind my eyeballs and are constant. The good thing is, they usually subside by noon or early afternoon! Another answered prayer and for this I am so thankful!

I am not sure if Dr. V will place me on the medication or not Thursday. He may wait and see what the LP results show. The LP is being done to measure the amount of pressure in the spinal fluid. I am hoping that with the removal of this fluid, I will begin to feel normal once again.

James and I have talked about it and prayed over it and I have decided to allow them to use my information for the study. With that, comes the chance that the medication they give me is simply a placebo. That scares me a little. The study is being conducted to determine if weight loss alone will help reduce the effects of Pseudotumor Cerebri (PC) or if the medication is needed as well. We will all be placed on the weight loss program, given a weight loss person (that's what I need-someone to hold me accountable) and will all meet with the physician regularly. My only concern is what if I am not placed on the medication and my symptoms get worse. That is one thing I am going to discuss with Dr. V Thursday. Surely they will make a change if they see that things are not improving.

We are looking at being on this medication for one full year. They have told me there is NO way I can become pregnant with this medication because of the side effects it would have on a growing fetus. I don't understand God's timing, but I know and am trusting that it is perfect. He has taken care of me so far, I know He is not going to fail me now! While I don't fully understand, because for those of you who know me, know having babies is what I dream of, I simply must TRUST!

I know without a shadow of a doubt that God has me in this place for a reason. Do I know why? Nope! But I know He is faithful and able. Oh how He loves me! He created and formed me. He saved me! He loves me!

Please pray that we will have safe travels Thursday. Please lift up Dr. V and his staff. I am not sure if Dr. V will perform the LP or not, so say a special prayer for the one performing the procedure (I really hope they will only have to stick me once). Please pray that God will wrap his arms around us and calm any fears that may arise. Please pray for those who sit and wait on the Dr. to say "We are done and all went well." Sometime waiting is the hardest part.

I have the most awesome prayer warriors! I love you dearly!

Until next time...

Friday, September 23, 2011

Ask And Ye Shall Receive!

"Cast all your cares upon him; for he careth for you." 1Peter 5:7

It brings such joy to know that I can go before the Lord and make my requests known and He will listen and answer them in His perfect time. Thank you so much for those of you who have lifted James and me in prayer this week. Your prayers have been felt and praise the Lord they have been answered!

James, my mom, Shelby and I traveled to Birmingham yesterday morning-not really sure what we were to face. The staff at the Callahan Eye Foundation were so helpful and nice. That was answered prayer number one!! After a series of testing (normal eye exam, checked my eye pressure, field test, neurological test), Dr. Vaphiades (Dr. V) confirmed the diagnosis from Dr. Parma. Pseduotumor Cerebri. We talked over causes...they are not really sure what causes it and we talked about a treatment plan (this is where I started to get a little nervous). Dr. V feels like we caught this early enough that with some weight loss (isn't everything related to our weight, ladies?!), only 10-15 pounds, and a medication that I would be ok. Answered prayer number 2!!

I will have to undergo a lumbar puncture (spinal tap) sometime in the near future (waiting to hear from them...thinking next week), which will let them know how much pressure is in my spinal fluid. There will be some travel back and forth to Birmingham, but we will work it all out!

Dr. V did tell us yesterday that there is no way I can be pregnant and take the needed medication, so that was a little disheartening. Lord knows I want a sibling for Evan! I must remember that in His timing all is made perfect! For now, we make sure that I get better and we deal with the rest as it comes. He will provide the strength I need on the days when it gets hard.

There is a study being conducted on this that they are anxious for me to take part in. We are still praying over this decision.

On to the prayer requests: Please pray that the spinal fluid will give the doctors the answers that they need and that I only have to be stuck once (that last one may seem minor, but have you ever laid your eyes on those needles??). #2, please pray that the weight will continue to come off at a healthy pace and that I will be able to do what is needed to support a healthy diet (basically self control...I LOVE to eat!!). #3, please pray that there will be few side effects from the medication and that those that I must endure will be slight bumps in the road for everyday functioning- I do have a 3 year old to take care of!! :) #4, please pray that James will be understanding on the days when I just don't feel too good. He has been so good to help me when I have needed it (bad headache days). He is my helper! I don't know how I'd make it without him! And lastly #5, please lift up my family, especially my parents. It is hard for them with us being 1 1/2 hrs. from them. They can't see me every day and know that I am ok. That makes it difficult for them.

Thank you prayer warriors for your unending love and support! I know that ALL things are possible with God and this is just a little something that I must endure. He is FAITHFUL and oh how He loves me! We could have received more disturbing news than this yesterday! God is good! I am trusting that God will make His path known...I then must have the faith to follow!

Until next time...

Tuesday, September 20, 2011

Today Is A New Day!

I have had last night and most of the day today to process what I was told yesterday... Pseudotumor Cerebri. HUM...well, as I told someone today, with everything new, comes fear of the unknown, but I know one thing for sure...God is holding me in His hands. James and I are prepared for what we will hear Thursday morning (as much as we can be, I suppose). I have read about causes (not really any sure answers on this) and I have read about treatments (some more scary than others). We just wait and see what the Dr. says and then we go from there!

I ask that you join me in prayer! Please pray for the physician and staff members that we will meet Thursday. Pray that they will exude great bedside manner and that our fears may be calmed by working with them. Pray that we will have open ears to hear the good, bad and ugly and that we will be able to handle the news delivered...whatever that may be. I pray that will see Jesus through us! Please pray for our families. As you can imagine, they are worried.

I have had some headaches today and some vision stuff, but there has been a little stress added to my life, so I think it could be a combination of it all. Mornings seem to be worse than afternoons.

God began a work in my life 29 years ago. He has a plan and He is not finished with me yet! He allowed so many people in my life that have provided words of encouragment, support and most importantly those who have loved me through it all! At the age of 16, when epilepsy struck, His love and faithfulness proved strong and true. At the age of 25 when we struggled to have a baby, once again, His faithfulness was what got me through and here we are at age 29. I expect nothing less than His greatest strength and power to prevail. He is strong! He is mighty! He is my Lord!

I have come to relize that it does me no good to try to control situations (for those of you who know me, know that is a HUGE statement). I cannot control what is to happen, it is in God's hands, I can only control my response! I am determined that through it all, He will be glorified. For now, we pray and we wait.

Until next time...

Tuesday, September 6, 2011

So Much To Say...

My mind and heart are so full! Where do I begin...

We went on vacation with the family (LeVerts) back at the end of July and had the best time. Evan LOVES the beach and the pool (maybe the pool a little more than the beach), but at any rate, he is a great beach baby. He was such a trooper and just went along for whatever the family wanted to do. He actually cried a little when we told him we had to come back home. That's my boy!! In case you didn't know, the beach is my all time favorite place to be! I always enjoy spending time with the favorite people in the world...maybe next year we can stay longer than a week!

We celebrated Evan's 3rd birthday on August 27, (His birthday is the 28th) with an alligator themed birthday party...where does he come up with these things?? It ended up being pretty cute, if I do say so myself! It is so hard to believe that my little boy is already 3! Where has the time gone? Sometimes I wish I could just bottle it all up and put it on a shelf and save for a rainy day...then I think of all the great things I would miss out on. I love it that he is able to talk to me now...not just 'yes' or 'no,' but he is able to have real conversations with me! It is the best. I love it that he is curious. He wants to know why things work and how. He wants to know about when he was a baby (he always says "I was sssoo tiny" and "I was ssooo cute!"), but most importantly, he wants to know about Jesus. He loves to talk about Jesus and I love that! I hope that he will always have that intensity about Him.

God is so good and He never ceases to amaze me. When trouble comes along, He is always there to pick you up and shine a ray of hope. There is always a silver lining to any situation. Back before we went to the beach, I went for a yearly eye exam (mainly so I could get more contacts!!ha), and the Dr. noticed that my optic nerves were swollen...both of them. She told me she wanted to recheck them in 6-8 weeks. She mentioned there could be something growing causing pressure on the nerves. We left it at that and said "See you in a couple of weeks." Over the next 6 weeks or so, I began to notice headaches, primarily in the mornings, but was unsure if they were "all in my head" or really something to worry about.

I went in for my check-up on September 9, and was told that one optic nerve looks better, but the other is about the same. Dr. Holman decided to order an MRI so that we could rule out a tumor. Wow, a tumor! Imagine hearing those words! I immediately thought about Evan. I have a three year old and a husband who need me (James would probably say he'd be just fine without me-but we all know differently!). After talking with James and deciding that we would rather keep this to ourselves and immediate family, I called my parents to fill them in on what was going on and what was next. I know they were concerned, but thank goodness they played it cool while talking with me! Per our request, they vowed to keep this to themselves and not share it with everyone, which I know was difficult for them because we are a praying family. There was just something about this that I wanted kept between us...hard to explain. No need for everyone to worry until there is something to worry about!

On September 15, I leave work for the MRI. On the way there, I call to make sure I know where I am going and come to find out they can't do the scan that day. I fall to pieces. This is the first time I have shed a tear over any of this. I had held myself together well and had confidence that all was fine until that very moment. In a need to hear that everything was going to be ok, I called Dr. Holman (my opthomologist-?sp) to hear her tell me just that. Sadly, she could not give me that reassurance, but she did tell me that she wanted the scan done that day so she would call me back. God had a plan! Dr. Holman called back within 2 minutes with a new location for my scan. She told me to be on my way and she would call me back as soon as she knew something.

God knew I needed the people at HealthScan in Montgomery, Alabama. They made me feel at ease and I can not tell you how many references to the Lord I hear while I was there. He is real in their lives and they call upon Him in times of need...I witnessed that first hand! I have no doubt I was where I needed to be! Praise the Lord for the other appointment falling through. I also am thankful for the meltdown I was able to have in the Ruby Tuesday parking lot. I needed to let myself cry...that does not show shows surrender! I was giving it to the Lord at that very moment!

James was there for me to cry on and I am so thankful! He does not always know what to say (does anyone when faced with something like this?) but he knows I just need him to be there. He is my strong tower...even when he does not realize it!

Friday morning around 8:45 I got the call from Dr. Holman. Of course my cell did not want to function, so we had to play phone tag but when we were able to talk she assured me there was not growth! PRAISE THE LORD! She read the report so I could hear it the way it was reported. No words have ever sounded so good! She did tell me there was reason to believe there was abnormal brain fluid that needed to be looked at and there were a variety of reasons that could be there. She told me I needed to see a specialist at Retina Specialist of Alabama on Monday.

Monday morning (today) I go in to meet with Dr. Parma. He is great! He met with me, assessed my eyes, looked over the MRI and spoke with another physician. He came in, talked with me about what he felt was going on and answered my questions. He even took the time to re-examine my eyes to make sure there is no evidence of RP (an eye disease that my dad has). diagnosis is Psedotumor Cerebri. This is an increase in spinal fluid on the brain. I am not sure of the cause, that may be something that we never know, but I do know that it is not related to my epilepsy or the meds that I have to take for the epilepsy. We will go to meet with a neurosurgeon Thursday morning at 8am in Birmingham. I am sure we will hear more information than we ever dreamed we would need to know then.

My prayer through all of this (since July) has been that James and I (and the family) would be able to handle what news was delivered. I have said since this all began that we can't change the outcomes of the tests, we can only control how we handle it all. It is all going to be fine. Jesus has me in His hand. He is the ultimate healer and oh how he loves me! My prayer is for my family, my friends and all those I will encounter in the coming days, that they see Jesus through me and my unfailing faith in Him.

God is good...ALL the time...God is good!