Ending This Chapter

HAPPY NEW YEAR!!! I have to say I am really excited for this year and I can't explain it in any other way than God. There is so much peace in that...
This past 2 years have been hard to say the least. Starting in Feb of 2010 I had a crazy appendix situation, but we removed and solved that and I was doing really well. Than my body went very hormonal....like really thought it was pregnant. As if that wasn't weird and freaky enough I started getting really terrible headaches, vision loss, memory loss, and other odd symptoms. When we finally convinced the doctors that it wasn't the birth control I went to a G.I. doctor who knew it was something neurological. I got an MRI and they found 2 brain cysts...as scary as this sounds I was relieved to have an answer. But, it wasn't an answer... and the list of specialist and doctors I saw after that is a mile long. And everyone had a test or theory, but by the end most of them looked at me and said "I don't know what to tell you, but I don't think this has to do with (whatever their specialty was)."

Great.... So I am basically just insane...good to know. Through all this I worked, for most of it full time and my symptoms got worse and worse. This meant, for the most part, my day was work and sleep...I had to stop doing children's worship, had to stop working in the coffee shop, had to stop cleaning, running, reading, going to school, basically I had to stop doing the things that really brought me joy.

My amazing husband really picked up the slack where he could and is the reason laundry got done, and that we had dishes to eat off. My friends were great and understood that I just couldn't do anything and helped me wherever they could. My family and my husband felt my pain just as much as I did, they cried with me and were there every step of the way (I really do not know what I would have done without them). I seriously cry every time I realize the love and compassion that was given to me. It's amazing that they stuck by my side and believed me even when it seemed like the only answer was that it was all in my head.

I don't really remember much of this time,the meds, memory loss, exhaustion, and pain make it all a little fuzzy and I don't really know what was real or not. I do remember calling my mom and brother to come pick me up from work at the end of the day sometimes because I was panicking and couldn't figure out where I was. I do remember that most meals didn't stay down and some nights spending hours on the bathroom floor. I remember screaming out to God, begging Him to just let me die because I couldn't do it anymore. And I remember wondering why, if He loved me so much, He would let me suffer for so long and hurt so many people. And I remember being really really angry at Him! I mean I would not have hugged Jesus if I had met Him during this time but instead punched Him square in the jaw and twice in the the stomach. I can admit I really lost hope. I have fought depression and thoughts of suicide before. High school wasn't always an easy time for me. But the level of depression I entered at this point in my life was something that hurts to even think about. I never lost faith that God was there, I just lost hope that He would ever heal me.

The emotional roller coaster I was on was like nothing I could have imagined I would be able to go through. And I had days where I went in the back room at work, fell to my knees, sobbing, and telling God He had to get me through the day because I just couldn't do it anymore. And He always did, I was always able to get off that floor, wipe my tears, and come back out smiling and able to help patients.

Than I found the Arachnoid Cyst specialist, he was the one who knew that these cysts could be symptomatic no matter their size, shape, or position. He was down in L.A. and had started his own hospital for people just like me. I had found my answer! We did phone appointments and he put me on a drug that was for Glaucoma, its side affect was decreasing CSF. And it helped a lot, not cure me helped, but for the first time in a very long time I was keeping food down and the meds were able to help me get somewhat out of pain. And than, about 3 weeks after I started the med it stopped working, I was doubling up on it, hoping, wishing, praying it would start to work again. It only made it worse. At this point my mom and husband got on the phone and started demanding that something happen, they had seen the light and that this was the first relief I had had in a year and they weren't going to let me go back. The doctor decided the best thing to do was to remove the cysts to see if it would help. He had an opening in his schedule and was willing to rush me in, I just needed a follow up doctor here.....

My G.P. refused to let me have the surgery. I hadn't seen him this whole time, but his F.N.P. instead and  he didn't just say he wouldn't be my follow up doctor, but that he had no further tests or steps to take to find out what was wrong. At the point of starting care with the specialist I had informed my boss's that I may need to rush down to have the cysts removed at the drop of a hat. They were amazing and said whatever I needed they would do. So I had told them I was going to have the surgery and they asked why it had fallen through. I lost it, I mean really lost it...I cried awful horrible sobs (the kind I only cried alone on the floor of the shower) and just let them know how desperate I was. They called in a favor to a local Neurologist who they knew would do the follow up care and she rushed me in...

She sat and listened to my mom and I for an hour and a half...tears and all. She really cared and asked if we would be willing to do one more test. She said if the test didn't work that she would be more than willing to be my follow up doctor, but she just wanted to make sure that we had tried everything else since the surgery is very dangerous and the cysts normally grow back. We agreed, we didn't care if she wanted to do 20 more tests, if she found the right answer we were going to do whatever she wanted.

The test was a Lumbar Puncture....they inserted a needle into my spine and drained fluid. I had already had a test similar to this so I knew it was an easy test and didn't expect it to do anything. They drained a decent amount of fluid off my spine and within an hour I was feeling better, and within 5 hours I was doing really well. Not good, but better. She wanted to do the test one more time to make sure this was the answer we were looking for. This time I had a cervical puncture and they drained almost all my CSF, and it was even better. Normally draining CSF causing people to have horrible migraines, it is not supposed to make a person feel better, but for me it took away the terrible migraine. So, it was obvious I had too much pressure on my brain and by relieving the pressure it helped my symptoms a lot.

She suggested a shunt...a tube that is inserted into my brain and runs down my body into my stomach. It was a less invasive surgery and she knew it would help at least a little bit. She did the surgery, it was supposed to be an awfully hard recovery and I probably wouldn't see results for a while. At first my brain had a hard time having so much taken off so fast! And I was really sick, they adjusted it though, and within 3 days I was taking less medication and keeping food down and really feeling good. We had to adjust it a few more times, but we found the sweet spot and it was good. I had to go back in 4 weeks later because I got a hematoma in my stomach incision. It was not too difficult of a surgery though and besides just healing from the surgery I was doing great! My hormones were balancing and I was doing good! I was doing worship again, and living my life! Everyone was saying how great I looked, that it was obvious I was doing well. My doctor and her whole office were shocked at the difference, they couldn't believe I was such a happy person...it had been a long time since people had really got to see that side of me.

I wish I could say that's the end of my story and I lived happily ever after, but my story was far from over. 5.5 months later I started getting a lot of pressure in my head again. It wasn't too bad and I thought maybe I am just pregnant or sick or something. I called my doctor after a week or 2 of it happening and she wanted to do some scans. By the time we started the scans I was going down hill fast, back on meds and not doing well at all. The scans didn't show anything, surprise surprise, they never do. That Friday she had me check into the hospital for pain relief and so she could keep an eye on me. We had planned to go on a trip that weekend so I already had the day off and so did my husband and mom. I got a private room, unheard of, but God gave me that. With the help of the sweet sweet nurses, I made it through until we were certain that it was my shunt. They did the surgery Sunday and found that my shunt was completely clogged and wasn't working at all. Every test had shown it was fine though. That was a hard recovery took longer than the first one, just because my body was tired.

My hormones never got back to normal, in fact they were worse. My stomach was actually growing so fast that I was getting stretch marks and we were all convinced I had to be pregnant. Everyone had made comments that I wasn't as perky this time around and I never really got my energy back. So the line of doctors started again, until we did an ultrasound to rule it all out and than I just stopped caring and was grateful for being pretty much pain free. I woke up on a Saturday not feeling too well, lots of pressure in my head. But I had been sick and was actually just finishing a round of anti-biotic. I just thought that I was still getting better. But, that Sunday was not good and by Monday my work could tell something was up and told me to take the afternoon off and to deal with this. It took over a week for us to understand what was happening, and my mom and mother-in-law became viscous and fought like crazy to find the answer. We ended up in the ER looking for pain relief and hoping for a flight to a specialist in San Francisco. None of that happened, my doctor was out of town for Thanksgiving and they couldn't do anything for me except give me more meds. So when my doctor returned we all decided surgery was the best option and she was fairly certain when she repositioned the shunt to keep it from clogging again that she had put it too far up and my ventricles and swollen and closed it off...she was right. The shunt wasn't working at all, again.

She went in and really worked with my shunt to make sure it was at optimum flow, she also had to replace the mechanism because it had proteins in it and was going to clog again. That recovery was the hardest, by far. I was so sick and it had taken such a toll on my family that we were all just so done with it all. I am a month post-op now... and the amazing part is everything is really great!

I had not realized after the second shunt surgery that I had never gotten better. When I went from such intense pain and such insane issues to being able to live again I didn't question whether it was as good as I could get. I was just grateful for the relief.

I realized as I got off the meds this time around how clear everything was. And the only way I can describe it is that it was like going from grainy antenna t.v. to H.D. satellite. Its like going from having a constant caffeine headache to virtually no headache at all. So, thats where I am now... doing great! Off all meds, hormones balancing, body healing....getting my life back.

My journey is far from over, there are things I can't do like bending over a lot, roller coasters are pretty much out, won't be bungee jumping, Yoga is not my friend, but all in all I can handle things like that. The hard part is this is most likely not my last surgery...shunts are man made, we are not designed to have them in our bodies. Most of the time people get a decent amount of time between surgeries though, I just had to be difficult....story of my life when it comes to surgeries. The hope is that I am done for a long time and I choose to claim health over my body. I am ending this chapter and starting the new one. I have chosen to believe that God has healed me (for a while at least) and I can be one of those people who goes 21 years without any problems.

And 2012 seems to bring me much peace. I feel like this could really be a good year for health, for family, for friends. I have so much to look forward to this year and so many dreams that I feel like could really get the chance to come true. Through all this I want everyone to know that I am so grateful for God and what He did. He really is the reason that I was able to make it through this trial, He is the reason I had a husband and family that was able and willing to stick by my side and give me the support I needed. God is the reason that I am healed now and honestly there is no other explanation.

Losing hope is really hard, we need hope in our lives to live day to day. But, I couldn't have survived without faith. I realized that it was o.k. to be mad at God, to yell at Him, and to want to punch Him. He loves me it doesn't matter if I am mad at Him. I realized that this whole thing brought me so much closer to God, and taught me what having faith was all about. Would I do it all again? Even a fraction of it...NO! But, God really does make all things good, my husband and I have been married for 3 years and in that time I have had 6 surgeries and it really has forced our relationship to mature at a very fast pace. I learned to rely on people and how much love I really  have in my life. My church body stepped up big time and showed me that they were family too, and the best part of it all is God is showing me what He wants for me. Not what I always thought He wanted from me, but what He really wants from me and I am willing to listen. Never lose faith, because God is always right there with you, crying on the floor beside you, feeling your pain, and turning the bad for good.